EXPLORING EXPERT AND PATIENT 
OPINIONS AND 
RECOMMENDATIONS REGARDING 
ANTIRETROVIRAL TREATMENT 
COMPLIANCE 
 
 
 
 
Name: Ms. Janice Meryl Frank 
Supervisor: Prof. Norman Duncan 
 
 
 
 
A research report submitted to the Faculty of Humanities, University of the 
Witwatersrand, Johannesburg, in partial fulfilment of the requirements for the 
degree of Master of Arts Counselling Psychology 
 
 
 
 
Johannesburg, 2006 
 
 1 
DECLARATION 
 
I declare that this thesis is my own unaided work. It is submitted for the degree of Master 
of Arts in Counselling Psychology at the University of Witwatersrand, Johannesburg. It 
has not been submitted before for any other degree or examination at any other 
university. 
 
 
--------------------------------------------- 
Janice Meryl Frank  
 
10 April 2006 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 2 
ACKNOWLEDGEMENTS 
The following research report is dedicated to my father, Mervyn Sidney Frank, 
who passed away suddenly on 2 January 2005. His love, wisdom and humour have made 
me the person that I am today. 
Prof. Norman Duncan: Your patience, guidance and support during the research 
process has been greatly appreciated. 
I would like to acknowledge the following people for their contribution to this 
report: Mr. G.M. Frank, Mrs. V. Frank, Mr. A. Fyzoo, Ms. E.L. Herrron, Mrs. A. 
Joggesar, Mr. V. Jogessar, Mr. B. Nel, Dr. A. Pillay, Ms. S. Reddy and Prof. C. Szabo. 
Thank you for your support. In addition, I would like to thank the participants for their 
role in the research process. This endeavour would have been impossible without your 
contribution. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 3 
ABSTRACT 
The recent introduction of antiretroviral treatment (ART) to the public health sector has 
meant that for millions of Human Immunodeficiency Virus (HIV)-positive patients this 
deadly disease has been transformed into a chronic condition. There has been much 
research done internationally on adherence to ART but in South Africa there has been 
little investigation in this area. This study aimed to bridge this gap by exploring expert 
and patient opinions and recommendatio ns regarding adherence to antiretroviral 
medication. To attain this, four experts and seven patients were interviewed using a semi-
 structured interview schedule. The experts had worked within the HIV field for at least 
two years while the patients had been chosen from public antiretroviral roll-out 
programmes and had been on ART for at least six months. These interviews were audio 
recorded and transcribed. The transcriptions were then explored for themes using 
thematic content analysis. These themes were categorised and discussed under four broad 
categories: patients? perceptions of barriers to adherence, patients? recommendations for 
improving adherence, experts? perceptions of barriers to adherence and experts? 
recommendations for improving adherence.   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 4 
CONTENTS 
Declaration        
Acknowledgements 
Abstract 
 
CHAPTER 1: INTRODUCTION 
Rationale         6 
Structure of the research report     7 
 
CHAPTER 2: LITERATURE REVIEW 
The structure of the HIV      9 
HIV replication       10 
Defining antiretroviral medication     11 
Defining adherence        12 
Assessing adherence       14 
Predictors of adherence      15 
Conclusion        19 
 
CHAPTER 3: METHODOLOGY 
Definition of keywords      21 
Research questions        22 
Research design       22  
Participant selection       22 
The semi- structured interview     24 
Researcher reflexivity       25 
Procedure        27 
Data analysis         27 
Ethical considerations        28 
 
 5 
CHAPTER 4: PRESENTATION OF FINDINGS 
Expert perceptions of barriers to adherence    31    
Expert recommendations for improving adherence   52 
Patient perceptions of barriers to adherence    59 
Patient recommendations for improving adherence   70 
 
CHAPTER 5: DISCUSSION 
Adherence vs. compliance      76 
Comparison of expert and patient interviews    77 
Strengths and limitations of the study    79 
 
CHAPTER 6: CONCLUSION 
Summary of recommendations      81 
Areas for future research      82 
 
REFERENCES       83  
APPENDIX ONE: PATIENT TRANSCIPTS   94 
APPENDIX TWO: EXPERT TRANSCRIPTS    144 
 
 
LIST OF TABLES 
Table 1. Demographic information     24 
Table 2. Medicine regime       24 
  
 
 
 
 
 
 6 
CHAPTER 1: INTRODUCTION 
 
The surveyed literature has suggested that stringent adherence is imperative to the 
success of antiretroviral (ARV) therapy (Buick, Fisher, Horne, & Leake, 2004; Ickovics  
& Meade, 2002; Kimmerling, Wagner & Ghosh-Dastidar, 2003; Stone & Smith, 2004). 
Antiretroviral medication has been recently introduced to the public health sector in 
South Africa. However, there appears to be little existing research on antiretroviral 
adherence. Hence, this study aimed to explore the opinions and recommendations of 
HIV/AIDS experts and patients regarding patient adherence to antiretroviral medication.  
 
RATIONALE 
In 2000, AIDS became the largest single cause of death worldwide. The Actuarial 
Society of South Africa (ASSA) model calculated that in 2002, 6.5 million South 
Africans were infected with HIV (Human Immunodeficiency Virus). Last year, it was 
predicted that in Gauteng alone, 1 538 208 people were HIV infected while the 
cumulative number of AIDS related deaths stood at 139 249 (Dorrington, Bradshaw & 
Budlender, 2002).  
The HIV/AIDS epidemic has had and will continue to have a significant socio -
 economic impact on the country. The ASSA model predicted that 6.1 million people 
within the age group 18 to 64 years were infected in 2001 (Dorrington et al., 2002). 
Among the many consequences of having such a high rate of infection, are the economic 
implications for the country, as this age group forms the country?s labour force 
(Dorrington et al., 2002; Umeh, 1997). Thousands of children are being orphaned by 
parents dying from AIDS and HIV related illnesses, thus contributing to an increase in 
the number of street children, which in turn contributes to the high level of poverty and 
crime in this country (Umeh, 1997).   
Antiretroviral therapy (ART) has been successful in the United States of America 
(USA) and other developed countries, being associated with a significant reduction of 
HIV related mortality and morbidity rates (Chung et al., 2002; Kimmerling et al., 2002). 
The introduction of antiretroviral therapy to South Africa means that for those who are 
granted access to medication, this disease is transformed into a chronic condition (Buick 
et al., 2004).  
 7 
 To ens ure ART success and that viral levels are suppressed, maximum adherence 
(i.e. > 90% adherence) is essential. Much research concerning adherence to antiretroviral 
medication has been done internationally (Becker & Clark, 1998; Berlant & Pruitt, 2003; 
Buick et al., 2003; Chung et al., 2002; Ickovics & Meade, 2002; Kimmerling et al., 2002; 
Ockene, 2001). However, in South Africa, due to the introduction of antiretroviral 
medication to the public health sector being very recent, there appears to be little research 
regarding adherence to antiretroviral medication. The theoretical aim of this study was to 
begin to bridge this gap by exploring the opinions of both experts working within the 
HIV/AIDS field and patients who are currently on antiretroviral medication regarding 
adherence to medication.  The practical aim is for the findings of this research to be used 
to generate suggestions for antiretroviral adherence intervention.   
 
STRUCTURE OF THE RESEARCH REPORT 
The following is an outline of the structure of this research report. Chapter 2 presents a 
survey of the literature reviewed related to the issues of adherence and antiretroviral 
treatment. It begins by introducing a discussion on the human immunodeficiency virus 
and explaining the structure of the virus and how the virus replicates. This is imperative 
in understanding the subsequent section, which provides an explanation of antiretroviral 
medication and how this class of medication functions. This is then followed by a section 
on adherence, which begins by discussing the construct of adherence and focuses on the 
complexities of measuring the construct. The literature review then discusses what the 
surveyed literature has highlighted as potential predictors of adherence 
Chapter 3 presents the methodology of the research report. It begins by defining 
the keywords of the research report and presents the research design. This is followed by 
a presentation of the rationale and identifying details of the participants. The next section 
discusses the potential influence of the researcher?s subjectivity on the research process. 
The data collection strategy and analysis of the data is then discussed and the chapter is 
then concluded by a discussion of the ethical considerations in the research. 
Chapter 4 presents the findings of the research. This is presented under four broad 
themes: experts? perceptions of the barriers to adherence, experts? recommendations for 
 8 
improving adherence, patients? perceptions of the barriers to adherence and patients? 
recommendations for improving adherence. 
The data analysis revealed some similarities and differences in the accounts given 
by the experts and patients. Hence, Chapter 5 explores a comparison of the expert and 
patient reports. 
Chapter 6 is the concluding section of the report and examines the limitations of 
the study. This is followed by a discussion of the areas highlighted for future research and 
finally some closing comments are presented.  
  
 
 9 
CHAPTER 2: LITERATURE REVIEW 
 
The following is a literature review of research on adherence and antiretroviral 
medication. It begins by discussing the structure and replication of the Human 
Immunodeficiency Virus (HIV) in an effort to understand the functioning of antiretroviral 
medication. This is followed by a discussion of the construct of adherence, noting its 
complexities with regards to measurement and prediction. Given the complexities of 
predicting adherence, some predictors highlighted by the literature are the presented. To 
understand the functioning of antiretroviral medication, it becomes necessary to have a 
basic understanding of the structure and replication of the HIV. 
 The HIV is a retrovirus that slowly destroys the human immune system over time 
(Jenkins, 2003). The term retrovirus is given because the transcription stage of HIV 
replication occurs in reverse to that of human cell replication. HIV is classified as part of 
the retrovirus family and the lentivirus subfamily. There are two types of HIV, namely, 
Type 1, which is found throughout the world and is common in South Africa and Type 2, 
which is found particularly in West Africa. There are further groupings within the 
different types, with Type 2 being further subdivided into groups M, O and N. There are 
still further sub-groupings within each group. It must be acknowledged that every type of 
virus is different and that it is this slight difference that contributes to a virus being either 
easily destructible or resistant (Jenkins, 2003).    
 
THE STRUCTURE OF THE HIV 
The HIV is composed of the proteins and enzymes necessary to replicate the virus. These 
enzymes, reverse transcriptase and protease, play an integral role in the replication of the 
virus. The core of the virus is its genetic material, i.e. two strands of RNA embedded in a 
jelly- like protein. The RNA serves as the blueprint for HIV replication (Jenkins, 2003). 
The core is enclosed in an outer envelope of protein, fat and sugar. The structure of the 
envelope is an important feature, as it too guides HIV replication. The viral envelope 
contains glycoproteins that can only attach to specific receptors on human cells, called 
CD4 receptors (Jenkins, 2003). Only certain human cells contain these receptors, thereby 
making these cells susceptible to HIV. Human cells containing CD4 receptors are T 
 10 
helper cells (cells that have a protective function in the immune system), Monocytes 
(cells that initiate antibody production), Glial cells (cells of the central nervous system) 
and Langerhans cells (cells found in the skin and mucous membranes) (Jenkins, 2003).   
 
HIV REPLICATION 
The process of replication can be seen as having six steps (Jenkins, 2003), a basic 
summary of which will now be discussed. 
Step 1 - Binding: This occurs when the glycoprotein on the viral envelope makes 
contact with a CD4 receptor of another cell. When the HIV binds to the CD4 receptor, 
other surface proteins are activated that allow the HIV envelope to fuse to the outside of 
the cell.  
Step 2 - Reverse Transcription: At this point, the viral core containing RNA and 
the enzymes, Reverse Transcriptase and Protease, is released into the host cell. Reverse 
transcriptase then synthesizes a DNA copy of the RNA. This is called Proviral DNA.  
Step 3 - Integration: The proviral DNA is then transported to the host cell?s 
nucleus. Another enzyme, Intergrase, then incorporates the proviral DNA into the cell?s 
DNA. Thus, when the cell attempts to replicate, it in effect replicates the HIV. 
Step 4 - Transcription: Once the proviral DNA is in the cell nucleus, the two 
strands of DNA separate. Enzymes then create a complementary strand of the DNA 
called the Messenger RNA (mRNA). 
Step 5 - Translation:  The mRNA contains the instructions for the synthesis of the 
new virus. The sequence of proteins on the mRNA strand serves as a code for which 
proteins from the cell nucleus will be assembled to form the new virus. This stage is thus 
concerned with the mRNA code being translated. 
Step 6 - Viral Assembly: The enzyme Protease breaks down long strings of 
proteins into smaller proteins. These proteins are then assembled according to the code 
translated from the mRNA to form the new virus. Once the virus is created, it buds off 
the host cell and has the potential to infect a new cell. Thus, an infected cell will give rise 
to many more infected cells. 
 11 
There are certain points in HIV replication where the process can be stopped. This 
is the logic governing antiretroviral medication. It is possible to intervene at the points of 
binding, reverse transcription and viral assembly, to prevent replication. 
 
DEFINING ANTIRETROVIRAL MEDICATION 
Antiretroviral medication (ARV) acts directly on HIV to prevent HIV replication. ARVs 
are classified into two main types, depending on which part of HIV replication they 
intervene at. The two types are Reverse Transcriptase Inhibitors and Protease Inhibitors, 
which act at the point of HIV replication where these enzymes function (Gallant, 1995; 
Jenkins, 2003; Maenza, 1998). 
Reverse transciptase inhibitors prevent the synthesis of proviral DNA. Reverse 
transcriptase inhibitors are further categorized into two types, nucleoside inhibitors and 
non-nucleoside inhibitors. The nucleoside inhibitors insert into the nucleoside chain and 
serve as a blockage, preventing the completion of nucleoside chain synthesis and thus the 
replication of the proviral DNA (Gallant, 1995). There are two important considerations 
regarding the use of reverse transcriptase inhibitors. The first is that the usage of this 
group of drugs has shown improvements in patients in the asymptomatic, intermediate 
stage of the disease. Secondly, treatment with this class of drugs alone appears to be 
inferior to combination therapy and to treatment that excludes this drug (Gallant, 1995; 
Ickovics & Meade, 2002; Maenza, 1998). 
Unlike the reverse transciptase inhibitors, which act early on in the HIV 
replication cycle, protease inhibitors act later on, preventing the protease enzyme from 
deconstructing protein and sugar chains into its constituents that are required to produce 
the new HIV (Gallant, 1995). This class of antiretrovirals appears to have greater 
potential for decreasing the viral load than the reverse transcriptase inhibitors. However, 
protease inhibitor treatment alone is associated with the rapid development of resistance 
and hence these drugs will always be used in conjunction with other treatments (Gallant, 
1995).  
From the above, it is evident that the most effective treatment lies in a 
combination of reverse transciptase inhibitors and protease inhibitors. This is supported 
by Montaner et al. (1998), who established that a combination of nevirapine, zidovudine 
 12 
and didanosine (i.e. triple ARV therapy) led to a more significant and sustained decrease 
in viral load and increase in CD4 cells. After one year, only patients who adhered 
stringently to this regimen sustained maximum viral suppression. 
The efficiency of highly active antiretroviral therapy (HAART) means that for 
those who have access to treatment, HIV/AIDS is transformed from a terminal disease 
into a chronic condition (Buick et al., 2004; Kimmerling et al., 2003). The introduct ion of 
HAART to the USA in 1996, has led to the significant decline of HIV/AIDS related 
morbidity and mortality in that country (Kimmerling et al., 2003; Stone & Smith, 2004). 
Though this condition requires consistent, long-term management, it is but a chronic 
condition nonetheless (Buick et al., 2004). This transformation is marked by significant 
viral suppression and this can only be realized with high levels of adherence; yet, in the 
USA, 50% to 60% of patients fail to achieve this (Stone & Smith, 2004). The necessity 
for strict adherence concerning antiretroviral medication has spurred interest in 
identifying and understanding the correlates of adherence. 
 
DEFINING ADHERENCE 
Many chronic medical disorders, such as asthma, diabetes and hypertension can no w be 
managed with medication. For the chronically ill, taking medication means a greater 
quality of life and, in some instances, a prolonged life (Haynes, 2001). Chronic 
medication, however, does not cure the disorder and the patient is thus forced to take the 
medication for as long as the disorder exists, which in most cases is as long as the patient 
is alive (Haynes, 1991). The chronic medication has to be taken regularly for it to be 
effective. In many cases, patients who cease taking their medication do not relapse 
immediately and thus begin to believe that the medication was not necessary to begin 
with. Some chronic medications may be fat - soluble and remain in the body for a long 
time, thus allowing the patient to benefit for some time after terminating the treatment 
regime. This is seen especially in the administration of antipsychotic medication, where 
patients cease taking their medication once their hallucinations have disappeared. The 
effects of the medication may still be seen for days afterwards but eventually, the sudden 
cessation of medication leads to a relapse of psychosis and subsequently psychotic 
behaviour (Drugweek, 2004). Often, patients cease taking medication because the 
 13 
symptoms associated with the disorder have disappeared e.g. influenza (World Health 
Organisation, 1999). 
Adherence or compliance is defined as the extent to which the time history 
corresponds to the drug regimen (Chung et al., 2002). In other words, adherence refers to 
how closely patients follow their treatment programme (Haynes, 2001). Following from 
this, non-adherence or non-compliance refers to patients who do not follow their 
prescribed treatment. This may take many forms, such as not taking their medication, 
reducing or exceeding their dosages, taking their medication at the incorrect times or not 
following the dietary specifications associated with the said medication (Chung et al., 
2002; Haynes, 2001). 
Adherence in the HIV context becomes an issue of great complexity for three 
main reasons. Firstly, HIV patients may have to take as many as 30 tablets a day. This is 
the result of the combination of antiretroviral medication, as well as numerous 
prophylactic medications for pneumonia, tuberculosis and other HIV-related illnesses. 
Secondly, certain medication may be associated with certain dietary requirements e.g. an 
empty stomach. This means that HIV-positive patients must remember which 
medications to take at which times and with which dietary restrictions. The third reason 
for the complexity of HIV medication regimens is the strong side effects, such as nausea 
and vomiting that are frequently associated with HIV medication (Chung et al., 2002; 
Ickovics  & Meade, 2002). 
In spite of these difficulties, maximal adherence to ARV regimens is crucial for 
three main reasons. Firstly, adherence to ARV allows a patient to gain the full benefits of 
Highly Active Antiretroviral Therapy (HAART), including a suppression of viral load, 
reduced destruction of CD4+ cells, the promotion of immune system repair and a slower 
progression to AIDS (Chung et al., 2002; Ickovics & Meade, 2002; Kimmerling et al., 
2003, Popp & Fisher 2002). 
Secondly, sub-optimal adherence can promote the mutation of the HI virus, which 
could lead to the development of one or more resistant strains (Chung et al., 2002, 
Ickovics & Meade, 2002, Kalichman & Rompa, 2003; Kimmerling et al., 2003; Lucas, 
Wu & Cheever, 2004). Once resistance begins, it becomes very difficult to stop mutations 
resulting in resistant strains, even if maximal treatment is administered. Such resistant 
 14 
mutations can lead to new strains of a virus developing that will not respond to current 
treatment regimes (Chung et al., 2002; Ickovics & Meade, 2002).  
Thirdly, failed treatment regimes present major expenditure for health-care 
services. Having to repeatedly treat patients will no doubt be costly, especially in South 
Africa where antiretrovirals have only recently been released, due to economic and 
political factors (Chung et al., 2002; Ickovics & Meade, 2002). 
 
ASSESSING ADHERENCE   
The construct of adherence poses considerable challenges with regards to assessment. 
The monitoring of adherence-related behaviour is important firstly, in detecting non-
 adherence and secondly in monitoring adherence as part of effective treatment planning. 
The surveyed literature offers three broad categories of adherence assessment: subjective 
measures, objective measures and biochemical measures, with objective measures being 
the most widely acceptable in first world countries (Berlant & Pruitt, 2003; Kimmerling 
et al., 2003). 
The subjective measures entail patients and health-care providers reporting the 
former?s levels of adherence. This is potentially problematic for two reasons. Firstly, it 
has been proven that health-care providers often tend to over-estimate their patients? 
levels of adherence. Secondly, patients? reports often also err on the side of inaccuracy. 
Those patients who report that they have failed to follow medical recommendations will 
be generally be more accurate than those who do not report that they have failed to follow 
medical recommendations. In addition, many patients will not report non-adherence for 
fear of the termination of their treatment (Berlant & Pruitt, 2003). This study, however 
was exploratory in nature and hence the use of a subjective measure of adherence (i.e. 
patient reports) did suffice. In addition, the patient participants had been on ART for at 
least six months and had had their adherence levels objectively measured via blood tests, 
hence it was felt that their account of adherence levels would be fairly accurate. 
Objective measures of adherence include pill counting and system monitoring. 
Pill counting involves health-care workers counting patients? pills at predetermined 
intervals in an effort to assess whether medicat ion has been taken or not. In addition, 
some hospitals monitor their databases to assess whether patients have successfully 
 15 
attended their follow-up check ups. Though effective, random errors of measurement 
contribute to the drawbacks of objective measurement. Medication Event Monitoring 
Systems (MEMS) have been utilised to record the exact date and time that a medication 
container was opened, thus providing an indication of the exact nature of consumption. 
However, the cost of such systems limits their use, especially in the South African setting 
(Berlant & Pruitt, 2003; Kimmerling et al., 2003). 
Some medication contains non-toxic biological markers, which can be detected in 
the blood or urine, providing evidence that the medication has been ingested. Such 
biochemical measures have their own drawbacks, as the detection of the substance is 
influenced by a myriad of factors such as diet, rate of absorption and excretion.  The 
construct of adherence is thus a difficult one to assess and this contributes to the 
difficulties around research in this area. Though each method offers some estimation of 
the patient?s adherence, there still appears to be the need for an accurate, cost effective 
assessment of adherence (Berlant & Pruitt, 2003; Kimmerling et al, 2003). 
 
PREDICTORS OF ADHERENCE 
Many factors have been found to influence medication compliance. The following section 
discusses some of the factors covered by the surveyed literature. When predictors of 
medication compliance are analysed, there appear to be two broad categories: predictors 
related to the medical regime and predictors related to the individual. 
 
Predictors related to the medical regime 
As previously mentioned, one of the challenges of adherence to antiretroviral medication 
is the complexity of the regimen, the strict dietary requirements, as well as the associated 
side effects (Chung et al, 2002; Ickovics & Meade, 2002). The AIDS Clinical Trial 
Group 370 found that adverse side effects were the strongest predictor of non-adherence 
(Ickovics & Meade, 2002). Side effects of the medication include but are not limited to 
diarrhoea, fatigue, nausea, vomiting, peripheral neuropathy and metabolic changes (Max 
& Sherer, 2000). In the trial group, these side effects were found to occur in the first to 
fourth week. Those patients experiencing an adverse effect were 16 times less likely to be 
compliant (Ickovics & Meade, 2002).  
 16 
Among the other adherence predictors was the complexity of the drug regimen, in 
addition to the number of different prescribed medications (Ickovics & Meade, 2002). 
Even difficulty ingesting large pills has been found to contribute to non-compliance 
(Mann & Roberts, 2000). It has also been found that the perceived ?fit? of the medical 
regimen into the patient?s lifestyle was a strong predictor of adherence (Gillford, 
Bormann, Shively, Wright, Richman, & Bozzette, 2000). Patients have reported that the 
complexity of the drug regimen requires that they structure their daily routine around the 
medication and that this has contributed to poor adherence (Mann et al., 2000). 
  
Predictors related to the individual 
Socio-demographic factors 
Generally, socio-demographic factors have not been found to predict adherence. 
However, some studies have found an association between adherence and variables such 
as age, gender, race, economic status, educational level and literacy (Ickovics & Meade, 
2002).  For example, gay men face considerable challenges to adherence that are 
associated with their own particular lifestyles (Shernoff, 2001) while women tend to be 
more concerned than men with the effect that the antiretroviral medication has on their 
body weight (Mann et al., 2000).  Pressure on women to fulfil the role of ?mother? has 
also affected disclosure of their status, thus impacting on the opportunity to be compliant 
(Mann et al., 2000). 
In pilot studies done by the Gay Men?s Health Crisis in 1998, the most frequent 
reasons for non-compliance by both heterosexual and homosexual men and women were: 
being away from home without the medication, forgetting to take a dose due to timing, 
fatigue, conflicts with eating and running out of medication (Shernoff, 2001). 
 
Psychological factors 
Patients scoring high on the Hostility Scale of the Brief Symptom Inventory have 
reported higher levels of non-adherence than those who scored lower on this scale 
(Burke, Dunbar-Jacob, Schlenk & Matthews, 1998).  Emotional distress over one?s health 
has also been found to be associated with adherence. In general, high levels of distress 
were associated with low levels of adherence (Burke et al., 1998, French, Weiss, Waters, 
 17 
Tesoriero, Finkelstein & Agins, 2005). Emotional distress, in general, has also been 
found to be a correlate of sexually risky behaviour, serving as an indicator for health 
compromising behaviour, which includes lower levels of adherence (Kalichman & 
Rompa, 2003). The occurrence of Post-Traumatic Stress Disorder has also been found to 
predict poor health outcomes in HIV-positive patients, including poor levels of adherence 
(Brief et al., 2004).  
Personality traits have not been found to be predictors of adherence. However, 
certain psychological states have been seen to affect patient levels of adherence (Burke et 
al., 1998). An example of this is avoidant coping strategies, that have been found to be 
related to low levels of adherence (Halkitus, Kutnick & Slater, 2005). Burke et al. (1998) 
cite an association between depression and adherence in some but not all studies while 
Ickovics & Meade (2002) reports a relationship between adherence and depression. The 
Kalichman and Rompa study (2003) revealed that non-compliant patients scored higher 
on the Beck Hopelessness Scale, supporting a possible relationship between depression 
and adherence.  Anxiety has also been found to be associated with adherence (Burke et 
al., 1998). Mental health challenges, especially with regards to depression and anxiety, 
have been found to pose challenges to adherence among gay men (Shernoff, 2001). 
The approximation of the prevalence of depression among HIV-positive patient 
varies in the literature. However, it appears that depression is found to be common in this 
population (Malan, 2003; Moosa, Jeenah & Vorster, 2005), with major depressive 
disorder being the most commonly diagnosed psychiatric disorder (Moosa et al., 2005). 
The complexities of such a diagnosis among a HIV-positive population must be 
acknowledged, and are due to the similarities of the somatic and physical symptoms of 
depression and HIV. Depression affects the HIV-positive individual by decreasing 
immune deficiency and contributes to poor adherence to ART (Brief et al., 2004; Moosa 
et al., 2005). In addition, the poor quality of sleep associated with depression has also 
been found to be associated with poor levels of adherence (Phillips et al., 2005).  The 
National ART Guideline (2004) cites active depression as a psychosocial consideration 
for administering ART. Though it is not an exclusion criterion, it highlights the impact 
that depression may have on an individual?s level of motivation to adhere to his or her 
treatment regimen (Department of Health, 2004). Yun, Maravi, Kobayashi, Barton 
 18 
Phoebe and Davidson (2005), and Turner, Laine, Cosler and Hauk (2003) found that 
adherence to ART was improved by antidepressant treatment in HIV-positive patients. In 
addition, the levels of adherence were highest among those patients who adhered to their 
antidepressant medication (Yun et al., 2005).    
 
Belief systems 
Patient perceptions of antiretroviral medication have also proven to be predictors of 
adherence.  A study of 109 HIV-positive patients receiving HAART revealed that 
medication compliance was dependent on how worried a patient was about related side 
effects balanced against his or her perceived need for the medication. Patients reported 
low levels of adherence if their concerns regarding side effects were high, relative to their 
perceived need for the medication (Buick et al., 2004). Belief in the efficacy of 
antiretroviral treatment, as well as the medication serving as a reminder of their disease 
status have been cited as be ing strongly associated with non-compliance (Mann et al., 
2000).  
Chung et al. (2002) found that higher measures of self efficiacy, i.e. subjects 
being confident that they would be able to take all or most of their medication, predicted 
high levels of adherence. In addition, it has also been found that strong beliefs in the 
creation of resistant strains as a result of non-compliance have served as a positive 
motivator for adherence (Chung et al., 2002). 
   
Drug and alcohol abuse 
Drug and alcohol abuse have also been found to be associated with adherence (Ickovics 
& Meade, 2002; Kalichman & Rompa, 2003; Shernoff, 2001). A study by Kalichman and 
Rompa (2003) revealed that patients who reported being non-compliant within the past 
week also reported current use of marijuana. The influence of alcohol and drug abuse can 
affect an individual?s ability to remember to take his or her medication. If people are  
intoxicated and in a social gathering, they will also feel less inclined to consider their 
HIV status and hence remember their medication. Such social gatherings will also 
contribute to a person being non-compliant, especially if they have not disclosed their 
status (Shernoff, 2001). 
 19 
Substance abuse is viewed as a correlate of sexual risk practices in HIV-positive 
individuals, and thus may serve as an indicator of health-compromising behaviours, 
including treatment adherence (Kalichman & Rompa, 2003). In addition, it is also 
hypothesized that certain drugs and alcohol may interact with the antiretroviral 
medicatio n, rendering the medical regime less effective.  
Rothlind et al. (2005) stated that the occurrence of alcohol consumption in the 
face of HIV- infection is associated with an increased risk of neuropsychological 
impairment and that this would impact a patient?s capacity for adherence.  Some studies 
have found that participants using alcohol and/or drug use were associated with worse 
adherence levels than those who did not use alcohol and/or substances (Berg, Demas, 
Howard, Schoenbaum, Gourevitch & Arnsten, 2004; Heckman, Catz, Heckman, Miller & 
Kalichman, 2004). However, Ware et al. (2005) felt that the stereotyping of alcohol and 
substance users as poor adherers to medication underemphasizes the non-alcohol/drug-
 related factors affecting adherence, hence contaminating one?s assessment of their 
capacity for adherence. This means that it cannot be assumed that an alcoholic will be 
unable to adhere to ART. He or she may have an excellent support system or a strong will 
to live that may contribute to his or her adherence. 
 
Sexual practices 
The Kalichman and Rompa  study (2003) advocates a relationship between adherence 
and sexual practice. Patients who reported a significantly greater number of sexual 
partners, greater rates of unprotected vaginal intercourse, sexually risky behaviours, 
including less protected intercourse with partners who were HIV negative or of unknown 
status were also patients who had been non-adherent.     
 
Conclusion 
High levels of adherence thus becomes an issue of complexity due to the varying 
psychological, treatment related, behavioural, social and demographic variables that 
intervene. Though perfect adherence becomes unrealistic, due to the multiplicity of 
variables involved, the literature has proven that it is not impossible (Chung et al. et al., 
2003).  
 20 
Though, internationally, a wealth of information on antiretroviral adherence does 
exist; there is little, if any, literature available on antiretroviral adherence in the South 
African context. To generalize the results of international research to the South African 
population would be na?ve, since South Africa comes with its own considerations of 
poverty, low education opportunities and the poor health-care services offered to many 
South Africans (May et al., 1998; Seedat et al., 2001). 
It has been thought that poverty is synonymous with poor levels of adherence and 
many may argue that this has been one of the long-standing excuses justifying the delay 
of large scale antiretroviral implementation. Surveys in Khayelithsa (South Africa), 
Sene gal and Uganda have proven that African patients on antiretroviral medication have 
been found to have compliance levels equal to their first world counterparts, with extreme 
poverty being paradoxically responsible for their high adherence levels (Oransky, 2003). 
Such shattering of beliefs implies that researching antiretroviral adherence in South 
Africa is essential if one is to plan successful treatment interventions for our unique 
population.    
 
 21 
CHAPTER 3: METHODOLOGY 
 
The research study aimed to be exp lorative in nature and sought to explore what experts 
and patients perceived to be the barriers to adherence to ARVs and as a consequence 
generate recommendations for the improvement of adherence levels. The study was 
directed at understanding the experiences of those currently on ART, as well as those that 
were deemed to be closely involved with ART intervention in a professional capacity. 
This understanding was sought through the investigation of patient and expert opinions 
and recommendations regarding adherence to ART, using semi- structured interviews and 
the exploration of the themes emerging from these interviews.  
 
DEFINITION OF KEYWORDS 
Before presenting the methodology of the research, it is necessary to clearly define some 
of the commonly used words in the study.  
HIV/AIDS expert: For the purpose of this study, an HIV/AIDS expert is defined as 
someone who has worked in an HIV setting, particularly with antiretroviral medication, 
for at least two years. It was felt that two years was a sufficient amount of time to have 
been exposed to this specific setting in order to generate informed opinions and 
recommendations concerning adherence to ART.  
HIV/AIDS patient: For the purpose of this study, a HIV/AIDS patient is defined as 
someone who has been on antiretroviral medication for at least six months. The 
researcher felt that six months was an adequate amount of time for the patient to have 
experienced/ not experienced side effects associated with the ART as well as witness/ not 
witness improvements and hence able to comment on these dynamics. 
Antiretroviral medication:  Antiretroviral (ARV) medication acts directly on HIV 
to prevent it from replicating. It does not kill the virus and hence does not function as a 
cure but rather serves to keep the virus at a low level in the body (Gallant, 1995; Jenkins, 
2003; Maenza, 1998). 
Adherence/ Compliance: Though two expert participants highlighted a significant 
distinction between the two words ?adherence? and ?compliance?, for the purposes of the 
research, the two words were used synonymously. Adherence or compliance is defined as 
 22 
the extent to which the time history corresponds to the drug regimen (Chung et al., 2002). 
Hence, adherence refers to how closely patients follow their treatment programme 
(Haynes, 2001). 
 
RESEARCH QUESTIONS 
On a broad level, the research initially sought to explore the opinions and 
recommendations of experts and patients regarding antiretroviral adherence in South 
Africa. As the research unfolded however, it appeared that the emerging themes were 
organised around four questions and these are as follows: (a) What are patients? 
perceptions of the barriers to antiretroviral medication adherence? (b) What are experts? 
perceptions of the barriers to antiretroviral medication adherence? (c) What are the 
patients? recommendations regarding the improvement of antiretroviral medication 
adherence? (d) What are the experts? recommendations regarding the improvement of 
antiretroviral medication adherence? 
 
RESEARCH DESIGN 
This study employed the semi- structured interview as the data collection strategy and 
thematic content analysis as its method of data analysis. There was no control group, the 
independent variable was not manipulated and randomisation was not employed. Thus 
the proposed study can be classified as a qualitative, exploratory design. No initial 
hypotheses were proposed, as hypotheses could only develop after the interviews had 
been analysed. 
 
PARTICIPANT SELECTION 
The original intention of the research was to interview only experts as to the ir opinions 
and recommendations regarding antiretroviral medication compliance. However, taking 
cognisance of the emphasis of local knowledge proposed by the community psychology 
perspective, it was decided to include patient participants in the sample. The 
underpinnings of local knowledge is that communities possess systems of knowledge, 
encompassing their experiences and coping strategies and that this forms the basis of 
their participation in the research process (Seedat, Duncan & Lazarus, 2003).   Follo wing 
 23 
this, it appeared to be almost ?common sense? that the patient interviews would be 
integral in understanding the actual experience of taking ART.  
  Participants were recruited by means of non-probability, purposive sampling. In 
keeping with the objectives of this study, the sample consisted of seven patients currently 
on ART and four experts working within the field of HIV/AIDS. The terms expert and 
patient have been defined under the heading of ?definitions of key words?.  
 
The experts 
The four experts were chosen from different health-care institutions within the 
Johannesburg and KwaZulu Natal regions. All participants had worked within the field of 
HIV/AIDS-healthcare or research for a minimum of two years. A description of their 
experience in the field of  HIV/AIDS healthcare or research is as follows. 
Expert 1 was a counsellor and coordinator of an adherence programme at a public 
hospital - based antiretroviral clinic. She has been trained specifically around issues 
pertaining to adherence to ARVs. Her interventions are adherence focused and are 
pitched at both an individual and group level. She has been involved in the HIV/AIDS 
field for four years.  
Expert 2 was a project manager at the Treatment Action Campaign (TAC). The 
project aims to provide sponsorship and treatment support to HIV-positive individuals 
that are not receiving ARVs from the government roll-out sites with an end goal of aiding 
them to achieve long-term access to ARVs. He has also worked as a home-based care 
worker and has also been involved in providing psycho-education pertaining to ARVs 
around the country. He has been involved in the HIV/AIDS field for three years. 
Expert 3 was a medical doctor who heads an antiretroviral roll-out programme. 
He liases between international organizations and the Department of Health in an effort 
to attend to the various needs of the HIV-positive community. He has been involved in 
HIV/AIDS related work for more than five years. 
Expert 4 is a psychologist and social researcher. He is involved in the World 
Health Organization?s (WHO) ?3x5 Initiative?. He is also a member of one of the science 
councils in South Africa. His work focuses specifically on mental health issues pertaining 
 24 
to HIV/AIDS with one of them being the effects of mental health issues on adherence to 
medication. He has been involved in the HIV/AIDS field for well over two years.   
 
The patients 
The seven patients were chosen from two antiretroviral roll-out programmes in South 
Africa. These patients were already part of established ant iretroviral rollout programmes.  
All patients were above 18 years old and reported to have been on ART for at least six 
months. The patients all presented as being cognitively able to participate in the 
interviews. The demographic information of the patients is tabulated below. (See Table 1 
and 2) 
Table 1. Demographic information 
 AGE SEX OCCUPATION 
Patient 1 28 Male Unemployed 
Patient 2 38 Male Unemployed 
Patient 3 32 Female Counsellor 
Patient 4 35 Female Counsellor 
Patient 5 35 Female Unemployed 
Patient 6 45 Female Unemployed 
Patient 7 29 Male Educator 
Patient 8    
 
Table 2. Medicine regime 
 DURATION OF 
TREATMENT 
DOSAGE (No. Of 
Tablets or Fluid/ 
Day) 
LEVEL OF 
ADHERENCE 
Patient 1 6 months 7 Never forgets. 
Patient 2 Not stated 5 Never forgets. 
Patient 3 7 months 12 Never forgets. 
Patient 4 12 months 4 Has forgotten once. 
Patient 5 7 months 45 ml of fluid Has forgotten.  
Patient 6 60 months 6 Has forgotten.  
Patient 7 6 months 5 Never forgets. 
 
 
THE SEMI-STRUCTURED INTERVIEW 
In exploratory research, the research area is one that is generally so unfamiliar that it 
becomes difficult to schedule a structured interview (Welman & Kruger, 2001). As 
 25 
previously discussed in the literature review, antiretroviral medication has only been 
introduced recently to the public health sector. Hence, the field is fairly new and the 
semi-structured interview seemed to be the best way to formulate research questions and 
generate hypotheses for further investigation. 
The semi-structured interview differs from the structured interview in that the 
researcher merely suggests a theme of discussion and further questioning is largely 
determined by what the participant brings to the interview (Welman & Kruger, 2001). 
Since the research aimed to capture the experiences of patients and experts with regards 
to ART, it appeared that such a technique would extract the participants? experiences that 
were significant to them, thus adding to our understanding of their interaction with the 
medication. This type of interview technique is coupled with a conscious effort on the 
part of the researcher to explore emotions and convictions about the theme being 
discussed, thus adding to the richness of the experience being explored (Welman & 
Kruger, 2001).   
This semi-structured interview used was developed based on the existing 
literature and sought to explore themes relating to adherence to antiretroviral medication. 
Two separate interviews for the experts and the patients were developed. Each interview 
was developed in a manner that allowed the researcher to tap into opinions that that 
specific category of participant could offer. In addition, much consideration was given to 
language usage in the development of the interview schedule. Patient schedules were 
comprised of questions that were structured in a simpler manner, to allow for easier 
translation if necessary. Both interview schedules were piloted to investigate any 
intrusiveness or inappropriateness (Refer to appendix A and appendix B). 
 
RESEARCHER REFLEXIVITY 
Another factor that distinguishes the semi-structured interview from the structured 
interview is the fact that the structured interview requires that researchers distance 
themselves, adhering strictly to the planned interview schedule whereas in the semi-
 structured interview, the researcher interacts with the participant  (Welman & Kruger, 
2001).  Such interaction is grounded in the anti-positivistic framework and means that the 
researcher takes with him or her, his or her own experiences that also influence the 
 26 
interview process. According to Seedat et al. (2003), the researcher?s experiences are no 
more or less important than the participant?s and are acknowledged as a real contributor 
to the research process. 
 The researcher has always had an interest in HIV/AIDS and in the scientific 
attempts that have been made to find a cure. In particular, the researcher has been 
fascinated with the concept of a virus that is able to manipulate the body?s own immune 
system cells to replicate and though there has been extensive research conducted on the 
virus, a cure has yet to be found. The above interest in HIV/AIDS spurred my decision to 
conduct research in this field. With the controversy around access to ART in the public 
health sector being highlighted in the media for months leading up to the commencement 
of the research, and the stringent adherence necessary for ART to be effective, I became 
interested in what factors would affect adherence to ART.  
During the researcher?s psychology internship, she counselled many HIV-positive 
patients and after listening to their struggles, her passion for wanting to contribute to 
helping these patients heightened. In addition, her experience of working in a psychiatric 
ward exposed her to barriers to adherence within the psychiatric setting. Her desire to 
contribute in some way in the HIV/AIDS field, and her exposure to HIV-positive patients 
and issues around adherence continued to fuel her interest in adherence to ART.   
The researcher?s experience as a Masters? counselling psychology student, meant 
that she brought to the interview the experience of basic counselling skills, which led to 
the exploration of the participants? feelings regarding their experiences with ART. It was 
felt that the researcher?s natural interaction with participants was one of unconditional 
positive regard that facilitated rapport building, thus allowing participants to openly share 
their experiences with the researcher. Though the research was conducted as part of the 
fulfilment for a Masters psychology degree, it must also be acknowledged that the 
research area has a strong medical aspect to it. It was felt that the researcher?s previous 
experience as a medical student also allowed the exploration of these aspects. The 
experience of interviewing patients on ART and experts was a rich and rewarding 
experience and it is hoped that this research does help people to understand the barriers to 
adherence to ART.   
 
 27 
 PROCEDURE 
Gaining access to the expert participants 
All the experts were contacted directly. Firstly, permission to conduc t the interview with 
the experts was obtained. This was done both telephonically and through a letter that 
outlined the rationale and aims of the research, assured confidentiality and requested 
written consent to continue with the research. 
 
Gaining access to patient participants  
Firstly, the relevant facilities at which the patients received their treatment were 
contacted. Then, permission to interview the patients, from the relevant facility was 
obtained. This was done both telephonically, and through a letter. This letter outlined the 
rationale and aims of the research, assured confidentiality and requested written consent 
to continue with the research.  
Once permission from the relevant facility was obtained, the potential participants 
were approached via the social worker or counsellor at the facility to ascertain whether 
they wanted to participate in the study. The potential participants were given informed 
consent forms to ensure that they understood the nature and purpose of the study. At this 
stage, a translator was utilized where necessary, to ensure that the patients understood the 
content of the informed consent form. Only once participants agreed to participate, were 
the interviews conducted with the participants. Upon receiving permission from the 
participant, the interviews were audio recorded.  
 
DATA ANALYSIS 
The interview tapes were transcribed by an administrative worker. These tapes were 
transcribed verbatim, with no additions or omissions made to the text. English was not 
the first language of some participants and even though their narratives comprised poor 
grammar, this was still captured verbatim. Some emphasis was also placed on the manner 
in which participants shared their information, hence dramatic pauses were also captured 
in the transcription. Once the administrative worker had completed transcribing the 
material, the researcher then checked the transcribed material against the original tapes to 
ensure the accuracy of the transcription.  
 28 
The method chosen to analyse the interviews was a thematic content analysis.  
Thematic content analysis is a technique of analysis that provides an objective and 
systematic presentation of interview content by identifying themes within the interviews 
(Titscher, Meyer, Wodak & Vetter, 2000). With antiretrovirals being only currently 
introduced to South Africa, the issue of adherence to antiretroviral medication is thus a 
fairly new one and it was the aim of this research to ascertain what experts and patients 
perceive as possible barriers to adherence to antiretroviral medication as well as their 
recommendations for improving adherence. Content analysis was thus chosen because it 
provided an expansive view of the available information. Though this technique was 
limited in its ability to delve deeper into issues, for the purposes of the proposed, 
primarily exploratory research, it did suffice. 
The data were categorized into themes as a starting point of the research. These 
categories were initially developed by two separate individuals and then matched to 
ensure the accuracy of the categorisation. The process of categorising the information 
began with extracting similar themes that emerged from the interviews. This was done 
separately for the patients and experts. The themes were then re-analysed and it was 
found that certain themes could be grouped together. This process of systematically 
conceptualising the different categories was done several times and resulted in an end 
product of four broad themes: experts? perceptions of barriers to adherence, patients? 
perceptions of barriers to adherence and experts? recommendations for improving 
adherence and patients? recommendations for improving adherence. Numerous sub -
 themes were then discussed under these broad themes, as will be presented in the next 
chapter. 
 
ETHICAL CONSIDERATIONS 
The starting point of ensuring the ethical integrity of  the research process was to gain 
ethical clearance from the University?s Medical Ethics Committee. The application for 
ethical clearance was drafted with the assistance of the ethics coordinator of one of the 
antiretroviral roll-out sites. This ensured that all research procedures were in keeping 
with the ethical requirements stipulated by the hospital, as well as the university. 
 29 
  Contact with the participants and the associated facilities only commenced once 
ethical clearance from the university and permission to commence with research at the 
facilities had been obtained. All the participants were notified both verbally and by means 
of an informed consent form of the nature of the study. In addition, their permission to 
conduct the interview, as well as their permission to audio record the interview were 
requested. Interviews with the participants only commenced once this was achieved.  
The informed consent form given to the participants informed them of the 
following: (a) The decision to participate was entirely voluntary, particularly, for patient  
participants, who were informed that the decision to not participate would not affect them 
in any way, especially with regard to their inclusion in the government antiretroviral roll-
 out programme.  
(b) All responses were confidential. The participants were also informed of 
limited anonymity, due to the face-to-face nature of the interview. However, they were 
assured that there was no reason for their names or any other identifying particulars to be 
disclosed.  
(c) Due to the sensitivity of HIV/AIDS, the participants were allowed to answer 
only those questions that they were comfortable with and for any reason were allowed to 
terminate the interview. This was imperative for two main reasons. Firstly, patients who 
are on antiretroviral medication often suffer side effects and it was felt that it would be 
inhumane to expect a patient to endure a 20 minute interview if they were not feeling 
well. In the interviewing process, two patients did terminate the interview prematurely 
due to physical ailments. These interviews were not included in the data analysis.  
Secondly, many participants began to share personal life stories that had either motivated 
their decision to work in the HIV/AIDS field or had motivated their levels of adherence. 
These stories were often emotive. It was felt that patients needed to feel that they were in 
control and did not feel emotionally overwhelmed during their narratives.  
(d) Should the interview have initiated any surfacing of unpleasant emotions and 
should the participants have needed further counselling, the participants would have been 
referred for further counselling. Again, due to the sensitivity of the content discussed, the 
researcher only conducted interviews at facilities where there were prompt, counselling 
referral systems set in place. 
 30 
(e) No deception of any nature was used in the research process, thus participants 
were informed of the exact nature of the study.  
(f) The interview was recorded only once permission had been obtained from the 
subject. This considered those participants who felt uncomfortable being audio recorded 
for whatever reason.  
(g) All interview tapes were destroyed upon completion of the research. The 
original transcripts were retained but all the indices of identification had been removed. 
Other ethical measures that were implemented during the research process 
included the manner in which patients were approached. Patients were approached by the 
social worker at each roll-out site, for permission to participate, as opposed to being 
approached by the researcher. It was felt that this would lead to patients feeling less 
pressurized when deciding whether they wanted to participate or not. The patients were 
then given appointments for the interviews approximately one week later. This gave the 
participants time to decide if they still wanted to participate or not. In addition, the 
researcher?s contact details were given to every partic ipant. They were encouraged to 
contact the researcher should they have had any queries regarding the research or should 
they have needed any counselling after the interview. 
 
 
 31 
CHAPTER FOUR: PRESENTATION OF FINDINGS 
 
This chapter presents the analyses of the expert and patient data. These findings have 
been divided into two main sections, namely expert data and patient data. The analysis of 
both the expert and patient interviews revealed two major themes, namely barriers to 
adherence and recommendations for improvement. The expert data are presented first, 
beginning with the experts? perceptions of barriers to adherence, followed by the experts? 
recommendations for improving adherence. Secondly, the patient data are presented 
beginning with the patients? perceptions of barriers to adherence, followed by the 
patients? recommendations for improving adherence. Finally, a discussion of the 
differences between the expert and patient accounts is presented. 
  
EXPERT DATA 
This section presents the themes emerging from the expert interviews. The experts? 
perceptions of the barriers to adherence are discussed first, followed by a presentation of 
their recommendations for improving adherence. 
 
Perceptions of barriers to adherence 
Prior to engaging with the sub -themes that emerged, a quote from Expert 3 is considered. 
There have been many studies done.  We try to predict who is 
going to adhere and who is not going to adhere, and what they 
show is that doctors are the least competent people in the way to 
decide who will adhere. When I say doctors, I include 
professional health care providers.  We might be tempted to 
think that the patient, who regularly comes to the clinic here, 
regularly makes it his prerogative, answers all the questions 
right, and etc; that he is going to take responsibility at home, but 
that has not proved true at all (Expert 3). 
 
The above account is in keeping with the literature that demonstrates that 
clinicians have difficulty predicting a patient?s level of adherence (Kimmerling et al., 
2003). Clinicians have been found to overestimate patients? levels of adherence and have 
difficulty detecting poor adherence (Miller et al., 2002).  The difficulty of health care- 
providers to predict levels of adherence emphasizes the complexity of the issue of 
adherence. One?s levels of adherence appear to be influenced by a myriad of factors. 
 32 
Some sub-themes of barriers to adherence did emerge from the Expert interviews and 
these are discussed below.  
 
Human error 
The sub-theme ?human error? was used to classify those attributes of poor adherence that 
are largely errors of human nature. The experts identified human error as one of the 
factors affecting poor compliance. Human error encompassed forgetfulness, as well as 
the tendency to follow others? opinions even though they may not be the most sound. 
The experts? reports demonstrate a common problem; the frequency of which 
probably occurs more than anyone would like to admit.   
And also what I have seen, is that other people they just forget to 
take their medication you know.  They just say, ?I forgot to take 
the medication? (Expert 2). 
 
The above account highlights forgetfulness, pure human error, as an obstacle to 
compliance. This is supported by pilot studies conducted by the Gay Men?s Health Crisis 
(1997 & 1998) that highlighted forgetting to take a dose as one of the most widely 
reported reasons for non-adherence among homosexual men, as well as heterosexual men 
and women (Shernoff, 2001). One needs only to consider how many individuals forget to 
take their antibiotics to highlight the difficulties of remembering to take medication.  
It must be acknowledged that there are probably underlying reasons for 
forgetfulness. Forgetfulness may be related to having to hide the medication, which stems 
from a lack of disclosure or, as will be discussed later, forgetfulness may be a means of 
avoiding the side effects of the medication. 
Of consideration though, is the fact that patients vary in their levels of 
forgetfulness with some patients maintaining a 100% level of adherence. An extension of 
this idea would lead one to explore whether the concept to be examined is one of 
forgetfulness or one of wilfulness and it would be interesting to investigate if there exists 
a relationship between the two.  
Even though patients have been educated around issues pertaining to adherence, 
some are influenced by messages that conflict with the ideas of medical professionals and 
 33 
sometimes patients relapse as a result. Below follows an attempt to explain this 
behaviour.  
I am a Christian, I am making an example and I am suppose to 
know what to do and all those things, but sometimes you are in a 
situation when you are faced with people that believe so much in 
cultural things and they tell you about ancestors?Which 
religion? Should I follow the way I always do, kneel down and 
pray to somebody I do not know? ? But at the end of the day, it 
is up to you the individual to choose (Expert 1). 
 
Expert 1 felt that it is human nature to reason and that this accounts for why 
people tend to listen to the advice of other people that are generally less qualified than the 
medical professionals. She used the analogy of being Christian in a culture that believes 
in ancestral traditions. Expert 1 verbalized that even though she knows what it means to 
be a Christian and is fully aware of all the commandments and rituals, there is still a side 
of her that occasionally is influenced by the ancestral tradition. From this, she inferred 
that no matter how strong one?s belief systems are, it is human nature to question and 
seek alternatives and that this may explain why patients are persuaded by the ideas of 
those less knowledgeable than the medical professionals. 
 
Lack of disclosure 
Disclosure refers to the admission of an individual?s positive HIV status to those around 
him or her. This is problematic, as the disclosure of one?s status can often lead to stigma 
and discrimination (USAids, 2005). The discourses associated with a positive status are 
generally related to a fear of contamination and being perceived as threatening,  especially 
by those with a poor knowledge of the disease (USAids, 2005). Though fraught with 
difficulties, disclosure can open up the doors to support from one?s family and friends. It 
is granted that the physical and psychological stressors of HIV could be complicated and 
accessing emotional support could serve as an important coping mechanism during this 
time.  
The expert participants identified disclosure as a factor that influenced the 
individual?s level of adherence. The fact that all expert participants highlighted the lack 
of disclosure as an obstacle to adherence emphasises its significance to adherence in the 
HIV/AIDS context.  
 34 
Certainly I think that issues around whether the person has 
disclosed or not and the reasons why they have disclosed or why 
they have not disclosed might well be related to who they are 
and to what kind of approach will they have. And certainly 
issues of disclosure are going to determine whether a person is 
going to adhere or not adhere.  So I think disclosure is one 
important issue (Expert 4). 
 
The experts cited that the stigma associated with ART accounted for lower levels 
of adherence in ART, as opposed to other medications like antibiotics. This is supported 
by a study conducted in a clinic in KwaZulu-Natal (Karim, Karim, Friedland, Lalloo & 
El Sadr, 2004). The main reason given for participants not disclosing their status was that 
they felt that those around them would not react positively. They felt that as long as there 
was no cure for the disease, there would continue to be stigma associated with it (Karim 
et al., 2004). Kumarasamy et al., (2005), Rowe et al., (2005) and Weiser et al. (2003) 
supported this, attributing the fear of stigma as a contributor to poor adherence. 
The association of ART with an HIV-positive status means that adherence to the 
regime is an admission of a patient?s status and this may increase his or her vulnerability 
to stigma and discrimination. This was supported by Expert 2, who likened the act of 
taking the medication to condom usage, which he perceived as a disclosure of one?s 
status. From a practical point of view, Expert 1 also stated that people are also more 
likely to forget their medication if they had not disclosed their status. This appears logical 
as people would be more likely to forget their medication if they were taking their 
medication secretly.   
If somebody hasn?t disclosed to their immediate family or to any 
person who is close to them, it is very difficult for them to take 
their medication (Expert 2). 
 
They are hiding the treatment, and again this thing of, if you are 
hiding the medication, definitely you are going to forget.  The 
chances are, even if you wont forget, you wont get a chance to 
take the treatment, because there will be questions asked (Expert 
1). 
 
Expert 3 was adamant on meeting a member of the individual?s family before 
including the individual in his clinical trial group, thus insisting on disclosure as a means 
of ensuring adherence. This is the same line of thought shared by the Department of 
 35 
Health (DOH), as disclosure is deemed to be an important psychosocial consideration in 
the patient selection criteria. The DOH recommends that patients need to have disclosed 
their HIV-status to at least one family member or friend or need to have joined a support 
group (DOH, 2004). Though the merits of this lie in ensuring that the patient has the 
support of their family, one could also argue that insisting on disclosure before allowing 
access to ART could in itself be viewed as discriminatory. One would need to consider 
the effects of stigma and discrimination associated with a positive status and gauge 
whether the stressors associated with this weigh against the support that a person may or 
may not receive upon disclosure.  
 
Stigma and discrimination 
Very closely related to the above theme is that of stigma and discrimination. Stigma and 
discrimination around HIV is one of the most probable reasons for the lack of disclosure 
of one?s status. This is probably because of the power of the stigma associated with the 
disease (Liechty & Bangsberg, 2003). The relevance of stigma and discrimination as an 
obstacle to adherence is seen in the expert reports that highlight the fear of HIV-related 
stigma and discrimination as  a mediator of adherence. This is supported by the literature 
that highlights stigma as a mediator of poor adherence (Karim et al., 2004; Kumarasamy 
et al., 2005; Rowe et al., 2005;  Weiser et al., 2003). Two strong sub-themes that emerged 
from the expert accounts were stigma and discrimination in intimate relationships and a 
lack of support from the family as a result of stigma and discrimination.  
 
Fear of stigma in sexually intimate relationships 
The issue of stigma and discrimination related to HIV in intimate relationships is very 
intense, probably because intimac y means that you are essentially placing yourself at risk 
of contracting the disease. Hence, it follows that those who are HIV-positive would be 
discriminated against because of a fear of infection. Expert 4 explained this in his 
account. 
I am thinking of Australia and in the States where especially 
where in gay clubs and things, people would comment, on ART.  
?Those people, I will not make a move on tonight.? And you can 
actually see, you can pick them up, through extended fats in 
different parts of the body. So, you immediately become 
 36 
discriminated against because you are on ART, and the people 
don?t want to get involved with you (Expert 4). 
 
The above account refers to one of the side effects of ART, lipodystrophy, which 
is the accumulation of fats around certain parts of the body (Corless et al., 2005). This 
allows one to identify who is on ART, which fundamentally is a disclosure of one?s HIV 
status and can lead to discrimination. Thus, the lipodystrophy serves as a visual cue that 
someone is on ART and hence is HIV-positive. The associated discrimination arises from 
a fear of infection. The surveyed literature found that lipodystrophy impacted on one?s 
quality of life and that there was an association between this and adherence levels 
(Corless et al., 2005). 
 
With all the work that I have been doing, the whole issue of 
relationships have come up very, very strongly in interviews 
with positive people. That getting hold of a person is not easy at 
all, if you positive.  Partly because they don?t want to get 
involved with you but partly they and partly because you don?t 
want to infect other people, and even if you do take protection, 
obviously your risks are higher and so on.  If I like you, 
especially if I like you, I don?t want to infect you.  And it creates 
difficulties in ongoing relationships, and it creates severe 
problems in getting involved in a relationship (Expert 4). 
 
Expert 4 went on to explain that for the above reasons, some patients opt to be 
involved only with other HIV-positive people. This, however, is associated with its own 
difficulties of infecting each other with different strains of the virus etc. Another scenario 
that was highlighted was that even if one was to be in a relationship, where safe sex 
precautions were exercised, if the two parties had to spend an entire day together, the 
positive status of the person in question would be disclosed by virtue of them having to 
take the ART.  
Thus, the act of taking medication is in itself an admission of one?s status and 
could open one up to discrimination. In some cases, the penalties of discrimination can be 
severe and one can see why someone would fail to take their medication in an effort to 
conceal their status. Such opinions were supported by the literature that highlighted 
specific challenges related to the gay community. In particular, Shernoff (2001) 
explained that if an individual were to be in a social setting with the end goal of sexual 
 37 
gratification, he may choose not take his medication with him as his HIV-positive status 
is the last thing that he would want to be reminded of.  
In sum, it can be seen that the act of taking medication is an admission of a 
person?s status and if the stigma associated with HIV is considered, especially in sexually 
intimate relationships, it can be seen that the fear of stigma, particularly with regards to 
sexually intimate relationships could be considered to be a barrier to adherence to ART. 
  
Lack of support resulting from stigma and discrimination 
The diagnosis of HIV is associated not only with physical complications, but 
psychological stressors as well (Malan, 2003).  From this it follows that social support 
would be integral to the effective coping of the HIV patient. The stigma and 
discrimination associated with HIV affect whether an individual discloses his or her 
status. The choice to keep his or her status a secret has a direct effect on the level of 
support that individual is able to access. Hence, the lack of support arising from a fear of 
stigma and discrimination is discussed as a barrier to adherence. 
 
Poor social support and emotional support from family members 
or the lack of having family members are also important things 
in the adherence.  We actually ask our patients to bring with 
them a family member to the adherence classes, so that we can 
include the family member as part of the support team and that is 
one thing that has been proven. That there is better accuracy 
when he is not doing it alone, but when there is a family member 
that knows what is happening (Expert 3). 
 
The expert participants demonstrated that the level of adherence is enhanced 
when a family member is able to render support around ART. The rationale behind this is 
that the family member could remind the person to take his or her medication as well as 
listen and provide emotional support should the person raise any concerns regarding the 
medication. This is supported by the study conducted by Karim et al. (2004). Those 
patients, in the study, that had disclosed their status to their family, had done so for the 
primary reason of accessing support. 
 
If somebody hasn?t disclosed to their immediate family or to any 
person who is close to them, it is very difficult for them to take 
their medication (Expert 2). 
 38 
 
The experts argued that the inability to have a level of family support that allows 
the person to take his or her medication freely is a factor that could serve to discourage 
adherence. This is probably because the patient would have to hide his or her medication 
thus increasing his or her chances of forgetting. This is supported by the Department of 
Health, (2004) and Malan (2003), who advocate the disclosure of an individual?s status to 
his or her family, in an effort to aid their adherence strategies. The expert participants 
also suggested that stigma in the communities arises from a lack of knowledge of issues 
pertaining to the virus.  
 
Psychological Factors 
The experts verbalized the importance of psychological factors as a mediator of 
adherence. Expert 4, whose work focuses directly with the relationship between 
psychology and HIV emphasized this. 
 
I think that a person?s mental health status is quite important to 
whether they actually do decide to continue with their 
medication or take the medication or not.  And why upon 
difficulties it is to differentiate between mental health status and 
personality trait.  But, I think if for example, somebody does not 
really care much about themselves and about their futures and 
their lives, and whether they live or don?t live? I do think that 
people?s will to live is an important one and belief, in the face of 
adverse circumstances; that they can survive (Expert 4). 
 
Obviously there are personal issues, which determine whether a 
person is going to take their medication or not.  I don?t know if 
there are personality traits as such?but maybe if one?s looking 
for a personality trait, maybe it is perseverance (Expert 4). 
 
The expert participants highlighted mental health status as being important in 
determining whether patients would take their medication or not. This is significant, as 
HIV is associated with various psychological disorders (Ickovics & Meade, 2002; 
Kalichman  & Rompa, 2003; Malan, 2003; Moosa et. al., 2005; Shernoff, 2001; Yun et 
al., 2005) and it is hypothesized that as these worsen and one?s mental health status 
deterio rates, as in HIV-associated dementia (Malan, 2003), this would make it more 
difficult for the patient to be adherent. In addition, the depression associated with HIV 
 39 
was also highlighted as being a mediator of adherence (Phillips et al., 2005; Turner, 
Laine, Cosler & Hauck, 2003; Yun et al., 2005). 
The experts could not associate a certain personality profile with a predisposition 
to good or poor adherence. This is in keeping with the literature that did not find 
personality to be a predictor of adherence (Burke et al., 1998). However, they did 
mention that ?perseverance? was a trait that one may find in those who do adhere to their 
medicine regimes. This could be interpreted in light of the fact that the patient knows that 
the ART is not a cure and is a life- long commitment, sometimes fraught with side effects, 
yet they are still willing to commit to the treatment. 
 
Specific Communities 
From the analysis, it appears that specific communities may impose their beliefs and 
ideals upon an individual and that this may impact on the individual?s capacity for 
adherence. Such issues within the gay community have already been discussed (under 
stigma and discrimination). In addition, the expert participants raised concerns regarding 
the prison community. Two further ca tegories that emerged under this sub-theme were 
the struggles within specific communities e.g. prison community; and cultural factors that 
may influence individuals. Cultural factors were categorised under this broad sub-theme 
of ?specific communities?, as it was perceived as being a community-specific 
phenomenon.  
 
The Prison Community  
The experts highlighted that the prison community was a community that had to confront 
specific barriers with regards to ART adherence. This is supported by the literature that 
stipulates that the prison environment has specific characteristics that directly impacts 
adherence levels in HIV-positive patients (Blanco et al., 2005). Expert 2?s particular 
interest in this community could be accounted for by the fact that this is one of the 
communities that the TAC has specifically focused on with regards to access to ART.  
Though prisoners have access to ART, it appears that their levels of adherence are 
dependent on the wardens in charge of them. This scenario raises complex issues, as 
outlined below. 
 40 
 
Well, a recent case is that there are people who are in the prisons 
which is a very different scenario. People take their medication  
but when they have to go back to get their follow up, the prison 
wardens don?t bring them back. Then, a week or two passes 
without them having their medication, which is a great challenge 
now... the people who are working on this side, who are part of 
the TAC?s project, those practitioners ensure the distribution of 
the medication? Their allocation are also taken and given to 
other people, which is very, very bad.  And sometimes, the 
prisoners, they work shifts, one was working in the morning that 
and the prison warden gave his medication at 9.00 in the 
evening, so they don?t give the prisoners their medication at the 
right time. They even forget  (Expert 2). 
 
Thus, the lack of adherence in the prison community appears to be linked to 
powerlessness, as the prisoners are entirely dependent on the prison wardens for their 
medication. The fact that prisoners are not taken for follow-ups at the correct times 
creates problems as this means that there is no continuity with regards to their treatment 
regime. Of specific concern is the allocation of medication to other individuals as 
generally the medication regime is tailored to the specific needs of that patient and may 
not be suitable for someone else. Such practices could lead to the development of drug 
resistant strains of the virus (Chung et al, 2002; Ickovics & Meade, 2002; Kalichman & 
Rompa, 2003; Kimmerling et al., 2003). 
The challenges facing the prison community above, raise the issue of the 
complexity of concerns specific to the different communities. The literature surveyed and 
data analysis also highlighted gay communities to have specific issues of stigmatisation 
that impact on levels of adherence (Shernoff, 2001), as discussed under the theme of 
stigma and discrimination. Such community-specific concerns require further 
investigation and consideration in the development of adherence-related interventions 
targeted at these groups. 
 
Cultural Factors 
The expert participants made reference to cultural factors that may influence patients? 
levels of adherence. These cultural practices appear to be specific to particular 
 41 
communities. These cultural practices are discussed below under the sub-headings of 
gender and traditional medicine and other practices.  
 
Gender 
The issue of gender in relation to the HIV/AIDS scenario cannot be denied. The literature 
surveyed highlighted gender inequalities as a reason for women?s vulnerability to 
infection (Smith, 2002). Even though females have been known to engage in more 
health-seeking behaviours (Mansfield, Addis & Mahalik, 2003), the literature did not 
support women as being better at adherence than men. The literature did, however, 
support differences in the adherence levels of males and females. Berg et al. (2004) found 
that there were definite social and behavioural factors between the genders that accounted 
for the different levels of adherence. Women were also found to be more likely to be 
diagnosed  with depression and this was seen to mediate adherence levels (Turner et al., 
2003).  
The experts felt that in black cultures men took a ?blaming? stance toward women 
disclosing their HIV-positive status. This is assumed to contribute to a fear of disclosure 
among women. Expert 1 narrated an instance of a patient who was too ill to fetch her 
medication and had to get her husband to fetch it without him knowing. This brings 
attention to the measures that a patient will take in order to avoid disclosure. She had to 
disguise the ART as a gift to prevent the husband from being suspicious.  
 
So I think this thing goes back to culture. Zulu, Sotho, all of us 
blacks, some of us are similar, there?s this thing that when a 
woman discloses something serious to the man, the man will put 
the blame back to the woman, who brought shame to his family, 
so they are scared to tell them (Expert 1). 
 
Expert 1 declared that black men, did not support women taking the ART. Her 
rationale for this was that men were unable to face challenges and battled to confront 
obstacles that they could not understand. 
 
You know, as far as I know, males like other people are very 
scared to face challenges.  They are very afraid, they don?t like 
challenges, especially life threatening challenges, you can rather 
come with a gun or a knife, so they can fight, but battles that are 
 42 
not fought, with weapons, they are scared of those things, 
confrontations and all those things (Expert 1). 
 
Thus, the experts highlighted that there exists a gender dynamic around adherence 
in black cultures. It was felt that male attitudes may hinder women from adhering to their 
medicine regimes. However, their reports did not account for which gender would be 
better at adherence. The surveyed literature suggested that men were better at adhering to 
medication than women but this was attributed to higher rates of depression among 
women and depression was conceptualised as being a mediator of adherence (Turner et 
al., 2003).  
 
Traditional Medicine And Other Practices  
In South Africa, many individuals lean toward traditional remedies to treat 
medical ailments and this includes treating their HIV-symptoms (Manci, 2005; Tjoa, 
2005). Traditional medicine consultation encompasses two broad categories, those who 
consult with the ancestral spirits in their diagnosis and those who use their own 
knowledge of organic resources e.g. herbs to diagnose and treat illness (Cole, 2005). This 
appears to be a more culturally accepted practice than conventiona l medicine and for 
seventy percent of the African population, may be their first attempt to seek help (Homsy, 
King, Balaba & Kabatesi, 2004). The competition between Western medicine and 
traditional medicine has been deemed to be a barrier to adherence (Rowe et al, 2005). 
These opposing health care systems have not been found to foster a collegial relationship, 
which leads to internal conflict in those patients who subscribe to traditional medicine 
(Tobias, 2001). 
 All expert participants raised issues around traditional medicine as a barrier to 
adherence, thus highlighting the significance of this practice as a consideration in 
adherence. 
The medication they get from traditional healers are still much 
more accepted and much more in line with culture when 
compared to the ARVs that the hospital gives out (Expert 3). 
 
 43 
Expert 4 highlighted that the manner in which people perceive health and disease 
is a key mediator in how they confront their illness and subsequently how they will seek 
to remedy their illness. 
 ?. I think that the question of ?Why me?? and ?Why is this 
happening?? are very different from people who have traditional 
beliefs about health and illness. And that if you say, it maybe 
because of such a witchcraft or such a displeasure of the 
ancestors or whatever then you are going to take a different 
approach as to why I got ill and therefore probably a different 
remedy to getting yourself better (Expert 4). 
 
The above account is integral in understanding why individuals from certain 
cultures may opt to seek traditional cures, as opposed to ARVs that have been 
scientifically proven to be effective. At the foundation of such a decision lies the instilled 
cultural belief of what is perceived to have triggered the illness.  
Expert 1 discussed the situation of a person visiting his or her rural home and 
being persuaded to take traditional cures. This ties in with the sub-theme of conflicting 
messages that is discussed later. 
 We?ve got this person or, we have ?Mr. So and So?, who can do 
wonders, we have this and this and this.?  And the pressure will 
be on you. And, if you don?t take that because whether you die, 
don?t tell us, because you refused what they tried to give you. 
Some of the people are so dependent to their husbands or their 
in-laws that they find really they can?t refuse and they have to 
follow what they say (Expert 1). 
 
 
It appears that the dependency on these family members puts pressure on the 
individual to succumb to the pressure of trying alternative cures. This could be because 
the alternative cures are culturally a more accepted method of treating illness, especially 
if the illness is perceived to be the product of witchcraft or other spiritual interventions. 
The decision to listen to family members as opposed to the medical professionals is an 
area that warrants further research. It is hypothesized that a respect for one?s elders, an 
acknowledgement of the wisdom of one?s elders and financial dependence may mediate 
such decisions.  
The experts raised the issue that traditional medicine often conflicts with modern 
medicine. This does not only refer to the perceptions of illness underpinning these 
 44 
different interventions but also on a more practical level. The two approaches appear to 
differ in how they perceive their remedy to work. 
 
?if you go to traditional healers, some of them will tell you that 
this is the things that make you so sick. You have to stop taking 
these things, and they will give you better things to use.  Things 
that are going to get much stronger. And then, you might start 
diarrhoea, or they can start, this cultural vomiting, especially for 
a person with TB (Expert 1). 
 
The above text refers to traditional healers that advocate that ARVs are not good 
for the body. Instead, they administer cultural cures that induce vomiting and diarrhoea. 
In a patient with tuberculosis, their sputum would be composed of mucous and phlegm, 
thus serving as ?proof? that the traditional cure is effective. However, the purging of 
fluids from the body may lead to dehydration and is perhaps not always the best solution 
for a patient with low immunity, potentially causing further complications.  
A similar practice that decreases the efficacy of ARVs is the use of the highly 
publicised African potato, as raised by the experts.  
A big story was made about the African potato being an immune 
booster.  The African potato has been proved now to interfere 
with the actual antiretroviral therapy.  So, there are many 
formulations going around, which is like a vitamin supplement, 
plus all the different goodies. And when you look on it, it says 
African potato as well, as an ingredient.  We cannot use that type 
of thing with the antiretroviral therapy because you want your 
antiretroviral therapy to be absorbed and to work properly and 
you don?t want to be under dosing the patient, even though they 
are taking the full dose, but it is not absorbed and they are 
getting under dosed (Expert 4). 
 
Some African shares some African potato and all those stuff like 
people will say, ?Don?t take this medication, it might kill you 
(Expert 2). 
 
 
The African potato (Hypoxis), a common substance in traditional cures, has been 
marketed as an immune booster. However, recent evidence proves that it decreases the 
absorption of ART, thus decreasing its efficiency. One study in particular found that after 
eight consecutive weeks of using the African Potato, the patients presented with severe 
bone marrow suppression (Manci, 2005). In spite of this evidence, pro-African potato 
beliefs are promoted by traditional healers and their opinions are respected by the 
 45 
community. Thus, interventions aimed at modifying such deeply ingrained beliefs will 
have to be conducted with utmost sensitivity. 
Another practice, raised by the exerts, that has been seen to conflict with ART has 
been encouraged not by the traditional African belief systems, but rather by the church. 
 
There are some churches where you find ?forced fasting?.  
Maybe they say you are praying so we have to have a seven day 
dry fast, and some of them take their fast in church, you have to 
go to church and they have keep on praying, so that HIV person 
will also have to.  It is not easy to keep those things when you 
are sick. ?..you have to take your medication, and you can?t 
take your medication on an empty stomach. ??...We find that 
they went to a church, where they are told, ?There is no HIV! 
You just have to pray, and then it will go away.? There was 
another lady on Monday, she was told to come and test 3 times 
and on the 3rd time she will be negative.  ??..And if you look 
at their brochures, when they write there, they can do a miracle 
healing e.g. HIV, diabetes, they know that the people are 
desperate and they will go (Expert 1). 
 
The above account makes reference to a common church practice of ?fasting?, 
which is the abstinence of food as a sacrifice to God. However, depleting body reserves 
of nutrients for someone with low immunity may cause more harm than good (Steinman, 
Conlon, Maki & Foster, 2003). In addition, patients are unable to take some of their 
medication as they have empty stomachs. There definitely exists a circular relationship 
with the act of fasting and HIV. Those with HIV may resort to such drastic measures of 
religious practice in an effort to seek a cure to the disease. However, the practice of such 
measures may in turn contribute to the maintenance of a low immunity.  
 
Political issues related to adherence 
One cannot deny the association between the South African political context and HIV 
(Butler, 2003; Mbali, 2004). There has been much controversy around the access of ART 
to public health consumers, with the government being less than willing to grant this 
population access to ART (Mbali, 2004). In addition, recent statements by government 
officials opposing the use of ART have projected ART in a negative light. Even though 
the public health sector now has access to ART, the original stance taken by the 
government could be seen to have affected the public?s perception of the efficacy of 
 46 
ART. An individual?s perception of the treatment would affect how well he or she 
adheres to it (Godin et al., 2005). An extension of this is that the government?s negative 
portrayal of HIV could affect patients? perceptions of the efficiency of the treatment and 
subsequently their levels of adherence. Hence, the South African political context is 
hereby discussed as a potential barrier to adherence. Following this, issues that are 
closely related to the political context are discussed under the headings of poverty, a lack 
of education and conflicting messages. 
 The experts viewed adherence as being affected by the political context in the 
following way.  
And I think that there are probably political issues there, that 
probably in South Africa people who are poorer are probably 
greater supporters of the government perhaps and if they are 
saying that antiretrovirals are more ? they?re less sceptical 
towards them than many of the followers (Expert 4). 
 
The above account refers to those individuals emanating from poorer socio -
 economic circumstances that may be more inclined to support the government?s stance on 
HIV. More specifically, this refers to the opinion that ?HIV does not cause AIDS? (Popp 
& Fisher, 2002) and the dangers of ART. It then follows that it would be challenging to 
advocate ART adherence to those who have strong loyalty toward the government and 
their opinions. The expert participants continued by describing the conflicting messages 
stemming from AIDS activists that promote their own cures and inherently detract from 
the importance of ART.  
What is happening is that we have AIDS activists who are 
promoting their own things against the antiretrovirals.  No matter 
what, at a certain point of time in a HIV positive person?s life, 
they need to start antiretrovirals and they also need to highlight 
the side effects (Expert 2).  
 
 
One can understand how such conflicting messages would result in confusion for 
patients, especially for those who are strong supporters of the government. The challenge 
for adherence would be in attempting to convince an individual of a treatment that is not 
supported by his or her government and one can see how that would affect an 
individual?s belief in the efficacy of the treatment.   
 47 
 
Poverty 
There is a clear association between poverty and adherence to ART due to the fact that 
high levels of adherence to ART is associated with numerous factors such as education, 
nutrition and the financial costs associated with treatment. This is of special significance 
in the South African context, where many patients live below the poverty line (May et al., 
1998). 
  The expert participants highlighted that poverty was an important consideration in 
attempting to understand adherence, particularly given that nutrition is a component of 
adherence. 
?Also nutrition.  Other people say, ?How can I drink 
medication without having food on the table? (Expert 2). 
 
I think that firstly poverty is linked to nutrition very often, and I 
think that taking medication on empty stomach?s and things like 
is quite difficult for people and I think once they start feeling the 
impacts, their motivation becomes decreased.  I also think that 
very often people in poverty have or feel, some people feel that 
they don?t have quite the same reasons to live as people who do 
have food in their stomach and are able survive in better 
circumstances.  And I think that poverty is also linked to 
education and as I said earlier, education is a big issue? but 
when you are living in poverty you have got many other 
concerns and you are not sick, you are going to be concerned 
about the things about keeping alive, rather than those things 
might affect you in the future and they may not. So it looks like 
an immediacy issue linked to poverty (Expert 4). 
 
The above account describes the various ways in which poverty mediates an 
individual?s level of adherence. Firstly, poverty means  that a person may not be able to 
adhere to the medication regime in terms of dietary requirements, as food may not always 
be available. Secondly, the experts commented on how poverty may affect one?s 
cognition in terms of motivation level, as well as whether HIV is a prioritised concern in 
one?s life. A person in a situation of poverty may be more concerned with immediate 
problems like the availability of food and hence may be less inclined to be concerned 
with an illness that would only manifest in the future.   
The issue of poverty is of special concern in a country like South Africa where 
many live below the poverty line (May et al., 1998). The government roll-out clinics 
 48 
attempt to assist such patients via a fortified porridge that is given to patients. However, 
this alone is not sufficient. Thus it appears that the issue of HIV highlights many other 
social ills and it is thought that HIV and its management have deep roots in political and 
social circumstances. The surveyed literature has mixed views in respect of the notion 
that poverty would serve as a barrier to adherence. A study of 289 African patients over 
48 weeks revealed that their levels of adherence matched those of their counterparts from 
the developing world. This study concluded that socio-economic status had no impact on 
adherence and should not be viewed as a limitation to adherence (Orrell, Bangsberg, 
Badri & Wood, 2003). Similar findings were found in Khayelitsha (South Africa), 
Senegal and Uganda (Oransky, 2003). However, Popp and Fisher (2002), felt that 
adherence was already complex under optimal conditions and that poverty-related 
obstacles such as a reliable source of medication, an efficient health-care infrastructure, 
adequate food, water and electricity could impact adherence to such a degree that Africa 
becomes a hub of treatment resistant viral strains. The author advocated that appropriate 
levels of adherence could be achieved with the use of adequate adherence intervention 
(Popp & Fisher, 2002). 
 
Lack of education 
An individual?s understanding of the nature of his disease and how the medication works 
plays a role in his or her level of adherence. Studies have revealed that patients who do 
not understand their illness or their treatment are more likely to make mistakes and less 
likely to adhere to their medication regime (Ockene, 2001). A sturdy education would 
allow patients the capacity to make sound decisions regarding their treatment and allow 
them to confront challenges regarding adherence in a more responsible manner. 
  The experts highlighted that education serves as a mediator of one?s level of 
adherence. Expert 2 originates from a community where people possessed a poor 
knowledge of HIV/AIDS and he felt that this contributed not only to their poor levels of 
adherence but also to whether they decided to use ART at all. 
What I have seen, if you are White or Indian or Coloured, they 
are the people who take the medication better compared to the 
black community. I am from a black community with people 
with a total lack of knowledge around AIDS. Not knowing what 
to do, or how to start the medication or where to go.  To take or 
 49 
not take their medication, or if they take it, they do not take it 
properly (Expert 2). 
 
I think that issues like education do come into it, understanding 
of the medical issues. And possibly in South Africa also there are 
mixed messages and I would suggest that possibly people who 
are less educated, less or living in more dire economic 
circumstances may be able to assess the pros and cons of it less 
dynamically and therefore might be influenced by different 
messages as well. (Expert 4). 
 
Expert 4 offered an explanation for the possible relationship between education 
and adherence levels. He argued that a lack of education could account for an individual 
not being able to understand the medical issues concerned and hence being unable to 
assess the pros and cons of the situation holistically. This appears plausible, as one would 
need to understand the dynamics of HIV and ART in order to have faith in the 
medicatio n?s efficacy. Expert 4 associated the lack of education with a vulnerability to 
conflicting messages. It is thought that a lack of understanding as to how the medication 
works would render someone more susceptible to the alternative treatments. This is in 
keeping with current adherence interventions that have a strong focus on psycho-
 education around HIV/AIDS as a preliminary intervention to discussing issues around 
adherence.  
 
Conflicting messages  
The term ?conflicting messages? is given to opinions that were different to those 
advocating the use of ART. An alternative to the stringent adherence requirements of 
ART may appear enticing, especially for patients that do not understand all the dynamics 
behind HIV and ART.  
The experts viewed the impact of conflicting message on levels of adherence as 
significant. With reference to the discussion under the heading of political issues, the 
experts referred to information from the government that ultimately opposed the use of 
ART, especially in relation to the fact that the government initially opposed the idea of 
granting ART to the public health sector (Mbali, 2004). In addition, the experts raised 
issues around AIDS activists that were marketing their own remedies. This would appear 
very contradictory to the public, as these political figures are associated with being pro 
 50 
ART and now, even they are marketing alternatives. In both instances, one could see how 
such practices would dampen one?s beliefs in the efficacy of the treatment. 
The expert participants felt that the pro-ARV community was at a disadvantage to 
begin with, due to the negative media associated with ART, especially during the time 
when the government had not yet granted access to ART in the public sector. 
  
I think we had a big disadvantage.  Before ARVs, there was a lot 
of negative information coming over, talking about side effects, 
talking about problems with cost, cautions about it not working 
because of adherence etc, etc.  And our community took this up 
and they heard about it (Expert 3). 
 
 
This is closely related to the discussion under the heading of political issues, 
which hypothesized that those from lower socio-economic groups may be more inclined 
to support the government. In addition, the reluctance of the government to allow access 
to ART in the public sector as well as the other circulating negative media may be 
associated with a perceived inefficacy of the medication. It is thought that such 
cognitions would definitely impact on whether someone opts for ART and how adherent 
he or she would be.  
 
You know the main problem we find with our patients is they 
start perfectly but when they go out, they listen to other people. 
They had heard somebody saying this thing about the ARVs, that 
once you start taking this, you will start to feel well but then you 
are going to be forsaken and terminally ill. You will die. 
Although they did the adherence and they understand the 
information correctly, but you know the power of the mind, 
because now, they are alone?  There they are amongst the 
people tha t are anti ARV, so they put all those negative things, 
and then they believe, that this is going to happen to them and 
they even show them examples, ?Look at so and so, look what 
happened to them?? We ask them, ?How long is the person 
been ill? Was that person taking medication correctly.  What 
happened? Did they go back to the clinic to report that there 
were the side effects? (Expert 1) ? 
 
The above account depicts how some patients may succumb to the negative views 
of others even though they have had the relevant adherence training. Some have the 
perception that ART is toxic and can kill you. However, what most fail to understand is 
 51 
that in those situations, the patient?s immunity was probably already low so the ART was 
not the cause of death.   
 52 
Expert recommendations for improving adherence  
The following section highlights recommendations emerging from the expert interviews 
as well as recommendations inferred from the perceived obstacles to adherence that were 
highlighted. First, the recommendations arising directly from the expert interviews are 
discussed and this is followed by a discussion of the recommendations inferred from the 
perceived obstacles to adherence highlighted above. 
 
The health care provider ? patient relationship  
According to the expert participants, the relationship between the health-care provider 
and the patient is very significant, as it has a direct influence on how a person perceives 
conventional medicine, as well as contributes to the person?s perception of illness and 
medication. In some cases, interaction with the health-care worker will be the platform 
where the patient first confronts issues related to disease, such as psycho-education 
around infection and finding out one?s status. It is felt that this interaction will impact on 
future decision-making and influence how one understands the illness and how one 
chooses to treat it. 
The experts felt that the relationship between the patient and health-care provider 
was one of the most important factors that influenced the levels of adherence. This was 
supported by the literature that cited physicians as the source that most influenced a 
patient?s medication related decision-making (Meredith, Jeffe, Mundy & Fraser, 2001). 
In addition, satisfaction with the physician-patient relations hip was highlighted as being a 
mediator of adherence (Godin et al., 2005; Heckman et al., 2004; Murphy, Marelich, 
Hoffman & Steers, 2004). 
 
I think if you can develop a health care provider patient 
relationship, where there?s an open, warm, understanding and 
communication between the two groups, and there is an element 
of trust both ways, and the patient feels well informed, and he 
feels very much included in the team and has an opportunity to 
voice his concerns, his problems at home and any barriers that he 
or she might think that might impact on the adherence; those will 
be very important things, and one of the most important factors 
of adherence is that relationship between the health care provider 
and the patient (Expert 3). 
 
 53 
The experts felt that fostering a warm patient-health-care-provider relationship 
was closely linked to confronting traditional belief systems, as well as social perceptions 
that conflicted with the belief systems behind ART. Expert 3 felt that the health-care 
provider-patient relationship should be such that the patient should feel comfortable 
enough to voice any concerns; including those about controversial issues, such as 
traditional medicine. An extension of this idea would be that adherence interventions 
would have to be directed not only at patients, but also at health-care providers. This 
means that perhaps health care providers will need to be educated on how to foster a 
relationship that would facilitate an open discussion of issues related to HIV. 
 
Mental health 
The relationship between HIV and psychological disorders cannot be denied and has been 
covered extensively by the literature (Brief et al., 2004; Halkitus et al., 2005; Ickovics & 
Meade, 2002; Kalichman & Rompa, 2003; Malan, 2003; Moosa et. al., 2005; Phillips et 
al., 2005; Shernoff, 2001; Yun et al., 2005). The literature also stipulated that mental 
health care was significantly associated with adherence levels (Turner et al., 2003). The 
experts felt mental health interventions were important in encouraging adherence.  
 
So I think again that it comes back to the individual.  And as a 
way we know about introverts and extroverts all those people. I 
prefer extroverts a lot, because they can talk about everything.  
When they are angry you know they are angry, they can fight 
with you, but tomorrow they have forgotten about it. They have 
cleaned their souls of everything (Expert 1). 
 
Expert 1 argued that those who are more aware of their emotions are more likely to voice 
their concerns and have fewer problems with issues of adherence. This implies that 
efforts to get patients more in touch with their emotions, i.e. psychotherapy should be 
implemented, along with the usual adherence counselling. 
 
What is one thing in particular is the finding and certainly my 
strong belief that if you are not psychologically well or 
psychiatrically well, it is going to have quite a bearing on 
whether you do continue to adhere to your medication or not.  
And the research seems to suggest that the people that are 
 54 
depressed, don?t really care all that much about their futures and 
so die or not die, well, if I have to bounce that against side 
effects, against disclosure, against all the other negative things 
about being on ART, I would rather not (Expert 4). 
 
The co-morbidity of psychological illness and HIV has been well documented and it is 
felt that psychological intervention in an effort to treat these illnesses would need to be in 
place as part of adherence intervention. Depression associated with HIV was highlighted 
as being a direct mediator of adherence (Brief et al., 2004; Halkitus et al., 2005; Turner et 
al., 2003; Yun et al., 2005). Anti-depressant treatment has also proven to improve levels 
of adherence in depressed patients (Turner et al., 2003, Yun et al., 2005). This means that 
perhaps a screening for depression needs to be compulsory when administering ART and 
patients need to be directed toward antidepressant treatment and/or therapy in an effort to 
ensure maximal adherence levels.  
 
Accessing support  
The experts verbalised the importance of support in maintaining good levels of 
adherence. This is supported by the literature. Godin et al. (2005) cited that a positive 
perception of support affected a patient?s perception of the medication and this in turn 
improved adherence. In a study of 113 patients, it was found that relatively low levels of 
adherence was observed in patients that did not belong to a support group (Berg et al., 
2004). Kumarasamy et al. (2005) found that being able to turn toward family for support 
was a facilitator of good adherence levels.  Three different avenues of support emerged 
from their interviews: support groups, family support and a treatment supporter. 
 
That is why the support groups are so helpful to other people.  
We sit there thinking that they have the worst problem in the 
world, and then, they listen to other people?s problems and they 
say, ?Hey Cindy, I am much better. You see that beautiful lady. 
Yes, that lady has got so many problems. I am much better than 
her.?  Then you see something good happen to that person 
(Expert 1). 
 
It was felt that support groups were effective as it gave patients the chance to be 
around individuals who are in similar situations, and as a consequence, the ability to 
witness stories that are sometimes worse than their own. This serves a motivational 
 55 
function, as the afflicted individuals can see that there are those that are worse off than 
themselves, yet still coping, and this inspires them to continue with their struggle. 
They must have a treatment supporter.  Someone who is go ing to 
weekly monitor that person?Someone who is going to be there 
for you.  Like a daughter supporter.  Someone will come around 
and see that you did take your medication. ?Do you feel well? 
Do you have any side effects?? Someone to give you the support, 
you know, so you can take your medication. (Expert 2)  
 
The concept of a treatment supporter was presented i.e. an individual who would 
be able to monitor the patient?s treatment and provide support around any difficulties that 
may emerge. This system is currently used by the TAC and most patients are allocated a 
treatment supporter. 
 
I would also see that there is in place a friend or family member 
or a social contact that can help and I would establish a friendly 
relationship with the patient if possible, and create that sense of 
feeling that it is not a once off thing.  The patient is going to go 
home and there are going to be problems and there is an open 
door for discussion and the patient must feel that, ?If I have a 
problem, I can access help immediately, ask questions and get 
clarification? (Expert 3). 
 
The importance of developing support in the home environment to facilitate 
problems being dealt with as soon as they arise was discussed. This may entail the health-
 care provider making contact with these family members, establishing rapport with them 
and educating them around the issues of adherence. As a future recommendation, since 
the family could serve as a support system, perhaps adherence interventions including 
family members should be developed. This is in keeping with the national guidelines on 
ART that list disclosure to at least one family member as an important psychosocial 
consideration in the management of ART (Department of Health, 2004). 
 
Education 
The experts felt that education played a role in whether someone adhered or not. 
 
And get the education about taking the medication and the 
benefit of taking it? It?s very important.  Should the person start 
he must be told about adherence, when they started taking the 
 56 
treatment, they must cont inue.  They have to be reminded at all 
times (Expert 2). 
 
In the antiretroviral therapy context, to make sure that the 
patients understand themselves, everything (Expert 3). 
 
It seems that it is imperative that the patient understands the entirety of what is 
going on. Such education, would not only allow them to understand their illness but a 
firm grounding in the HIV and the rationale behind ART could also serve to counter 
conflicting messages, hence boosting levels of adherence.  
Expert 2 stressed that stigma was the product of a lack of understanding of the 
virus at the level of the community. From this it follows that an increased focus on 
psycho-education at the level of the community is vital. The aim of such an intervention 
would be to increase awareness and as a consequence, decrease the stigma associated 
with the disease, ultimately resulting in better support systems for patients to draw on.  
 
Human error 
Expert 2 emphasised forgetfulness as an element of human error that served as an 
obstacle to adherence. The exploration of this sub-theme implies that future studies on 
adherence levels would need to focus on what is deemed to contribute to forgetfulness 
and strategies would need to target these contributing factors. This leads one to believe 
that time-keeping devices in an effort to combat forgetfulness should be a component of 
adherence strategies.  
In addition, future research could also look at the relationship between 
forgetfulness and wilfulness in an effort to ascertain whether a person?s leve l of 
motivation affect his or her memory and, by extension possibly intervene at a level of 
increasing his or her motivation in order to decrease his or her level of forgetfulness.  
 
Specific communities 
The challenges highlighted by the specific communities such as the prison community 
and the gay community warrant that adherence needs to be investigated, not only at a 
global level but also at a level of the specific community concerned. It is thus 
 57 
recommended that further research be done at the level of the specific community in an 
effort to further highlight these issues. 
 
Gender 
It should be noted that the issue of gender though expressed quite passionately had only 
been highlighted by Expert 1. By the same token, however, it must also be stated that that 
Expert 1 was the only female expert and perhaps may have been more inclined to 
highlight issues pertaining to gender inequality. Gender prejudices aside, however, there 
definitely appears to be complex gender dynamics with regards to taking ART. It is hence 
recommended that this area be investigated further. Should the research find that gender 
is an important variable, then perhaps interventions will need to focus on adherence as a 
?couples? issue, perhaps employing a couple?s therapy component to adherence 
counselling. This was supported by a study (2005) that employed the use of a couples-
 based intervention to improve HIV medication adherence. It was found that the couples 
that participated in the couples-based intervention showed higher levels of adhe rence 
than their counterparts who did not participate in the intervention (Remien et al., 2005). 
 
Traditional medicine and other practices 
The consideration of traditional medicine and other practices is imperative in future 
adherence education interventio ns, as one would have to analyse the different cultural 
discourses around the origin of illness and this may need to be the starting point for any 
intervention.  It is felt that further research along this avenue will also help us to 
understand why patients may be more prone to listening to opinions that appear to oppose 
ART. The literature surveyed recommended the involvement of traditional healers  
(Tobias, 2001) in helping to counsel and using them to advocate adherence strategies.  
The decision to listen to family members as opposed to the medical professionals 
is an area that warrants further research. It is hypothesized that respect for one?s elders, 
an acknowledgement of the wisdom of one?s elders and financial dependence may 
mediate such decisions.  
It also appears that the church may be a source of messages that conflict with the 
ARV roll-out campaign. This is an important consideration in the development of future 
 58 
adherence interventions, as the churches will then need to be a recipient of education 
around HIV and adherence to HIV medication. 
 
Poverty 
The association between poverty and adherence is undeniable, especially since 
maximal adherence requires adequate nutrition, which is not always achievable. It is thus 
recommended that the dynamics of adherence to ART are examined in the light of the 
political and social circumstances affecting the patients concerned. It is hoped that an 
understanding of these dynamics would lead to an increased understanding of the 
challenges faced by patients and hence facilitate better intervention. The link between 
levels of adherence and the socio -political context (Butler, 2003; Mbali, 2004) also 
suggest that adherence intervention could be guided by a community psychology 
approach, where communities are empowered to improve their socio -economic 
circumstances (Seedat et al., 2001) and, as a consequence, their level of health 
consciousness. May et al. (1998) argue that there is strong link between poverty and 
unemployment. They suggest a greater focus on education training in an effort to 
facilitate greater employment to help fight poverty.   
 
 
 
 
 59 
PATIENT DATA 
This section presents the themes emerging from the patient interviews. The patients? 
perceptions of the barriers to adherence are first discussed, followed by a presentation of 
the recommendations for improving adherence, emerging from the patient interviews. 
 
Patient perceptions of barriers of adherence 
 
Failure to adopt a responsible approach to one?s life 
Prior to reflecting on the patient excerpts, it is necessary to reflect on what it means to 
adopt a responsible approach to one?s life. It can be assumed that the concept of 
?responsibility? is relative and would differ among participants. Considering the other 
themes that have emerged thus far, it becomes apparent that what one deems to be 
responsible will depend on various factors such as mental health status and social 
perceptions of ART. If one goes back to the issue of poverty, taking a responsible 
approach may mean going to work and if the side effects of the medication hinder your 
work performance, then one could argue that being responsible could mean terminating 
your treatment to facilitate maintaining an income as the issue of poverty is probably a 
more immediate threat. Thus, the discourses around what is responsible are quite 
complex.  
 
The thing is that if someone is not responsible for his life, then 
they just forget to take the medication?He means that here they 
are taught that they must take the medication, on the time that 
they have structured and if you don?t do that, the sickness will go 
on. It is important to take the medication and if you don?t do that 
you are not responsible (Patient 1). 
 
The patients felt that not taking the medication was an act of irresponsibility. 
Patient 1 appeared to rationalize this by stating that if one had received the appropriate 
psycho-education around ART and adherence, then poor adherence was being 
irresponsible. As one will see in the data analysis, the issue of poor adherence, even in 
the face of good education, is not that simplistic. There does appear to be a myriad of 
factors like conflicting messages, errors of human nature and psychological well-being 
that would mediate a decision to take ART or not. It would be interesting to examine 
patients that have failed to maintain the optimal levels of adherence in the face of the 
 60 
appropriate psycho-educational interventions to establish why they were unable to 
adhere.     
 
Substance abuse 
Though only one patient had spoken of the effects of alcohol on one?s level of adherence, 
it warrants discussion, as this was one barrier that had been highlighted by the literature 
surveyed. Drug and alcohol abuse has been found to mediate levels of adherence 
(Ickovics & Meade, 2002; Kalichman & Rompa, 2003; Shernoff, 2001). The influence of 
alcohol could affect an individual?s ability to remember to take his or her medication. In 
addition, when the individual is under the influence, he or she may be less prone to 
remember his or her status and the medication. Rothlind et al. (2005) stated that the 
occurrence of alcohol consumption in the face of HIV-infection is associated with an 
increased risk of neuropsychological impairment and that this would impact a patient?s 
capacity for adherence.  Some studies have found that alcohol and/or drug use was 
associated with worse adherence levels than those who did not use substances (Berg et 
al., 2004; Heckman et al., 2004). However, Ware et al. (2005) felt that the stereotyping of 
alcohol and substance users as poor adherers to medication underemphasizes the non-
 alcohol/drug-related-obstacles to adherence, hence contaminating one?s assessment of 
their capacity for adherence.   
 
The people maybe?.if the people are drunk. They drunk the 
beer, maybe they smoking, they smoking the dagga and then you 
forget to take the tablets. Because me, there?s no smoking and 
me don?t drink beer and some things like that (Patient 2). 
 
Patient 2 felt that the use of alcohol and drugs could contribute to someone 
forgetting to take their medication, as in agreement with the literature (Berg, et al., 2004; 
Ickovics & Meade, 2002; Kalichman & Rompa, 2003; Rothlind et al., 2005; Shernoff, 
2001). He implied that the altered state of mind associated with the use of alcohol and 
drugs could lead to patients forgetting their medication. 
 
 61 
Disappearance of symptoms 
Patients have been seen to terminate their medicine regimen when they perceive that they 
have been cured. This scenario is not exclusive to ART. Poor levels of adherence to 
chronic illnesses such as asthma, hypertension (Ockene, 2001) due to patients feeling 
better have been noted. This is of special concern in the HIV/AIDS setting because the 
purpose of the ART is to minimize symptoms to facilitate a better quality of life. 
However, the disappearance of symptoms does not mean that the virus has been 
destroyed. It merely means that the virus is present at a low level in the body. Rowe et al. 
(2005) highlighted the absence of symptoms as a barrier to adherence. Accessing the full 
benefits of ART means a life- long commitment to the medication, a concept that may be 
difficult to digest for some.     
The patients cited the disappearance of symptoms as a reason for poor 
compliance. This means that poor adherence as a result of the disappearance of symptoms 
is an avenue that needs to be considered. 
 
They just look at their body and say it?s okay. I can?t take the 
medicine because their life is alright now. But the doctor never 
give you the results. The doctor must give the results again and 
then the doctor must check you okay. Now the life is okay now 
(Patient 2). 
 
People won?t take the medication at first, you feel better maybe 
because they are not very sick at that times and sometimes they 
do forget?They think are normal now, they are healthy, it?s ok.  
That?s why they stop it (Patient 4). 
 
They going to take the medication for maybe 2 ? 3 months, and 
after 3 months they think, there is no pain in my body, I?m ok, 
I?m fine, then they decided they are not taking the medication, 
and then by the time and when the pains come, then it is worse, 
then they remember to take the medication.  They have never 
been committed to the medication before, so they have decided 
they are only taking the medication now (Patient 5). 
 
All three excerpts demonstrate patients who forget to take their medication once 
their symptoms have been treated. Thus, the presence of symptoms may serve as a 
reminder for patients to take their medication. Patient 5 referred to a scenario where a 
patient had forgotten but once the symptoms returned, began to take her medication 
again. With regards to ART, this poses difficulties, as fragmented compliance as 
 62 
described above can lead to mutation of the virus and the development of resistant 
strains, making the disease even more challenging to treat (Chung et al., 2002; Ickovics 
& Meade, 2002; Kalichman & Rompa, 2003; Kimmerling et al., 2003; Lucas et al., 
2004). The issue of poor compliance in relation to the disappearance of symptoms is 
something that already appears to be confronted in adherence interventions at present 
(Ockene, 2001). 
 
Conflicting messages 
Conflicting messages refers to messages that emanate from the media and general public 
that are anti-ART. The patients felt that conflicting messages constituted a contributing 
factor to poor adherence. Three different examples of conflicting messages and the 
associated context are discussed separately.  
Some individuals have heard of the death of a patient soon after the patient had 
begun to take antiretroviral medication. This is not a common occurrence and is generally  
due to the patient having such a low level of immunity that it is too late for the situation 
to be remedied. However, to the layperson, the association between ARVs and death is 
already made. This leads to the medication being viewed as toxic and more damaging to 
the body than the HI virus. Such perceptions have a negative impact on how one 
perceives the efficacy of ARVs. 
Patient 3 was the only patient to raise this issue. This may be because she also 
functions as a lay counsellor and may have highlighted circumstances that she has 
observed during counselling. 
   
Because, when you counsel someone, you tell him or her about 
medication, they tell you, ?You know, someone was telling me 
their big brother was taking this medication and now he?s dead.? 
And me, I?m advising him that, ?You don?t know how sick was 
that guy. You don?t know his CD4 count. You don?t know how 
long he?s been sick.? We can be HIV together but we can?t die 
together and we can?t face it like the same (Patient 3). 
 
In the above account, Patient 3 attempts to explain these concerns by stating that 
one needs to have much more information before we can ascertain whether the cause of 
death was due to ARVs. However, it is understandable that to an individual who is 
 63 
ignorant of the intricacies of HIV and ART, it would be easy to make the association 
between ART and death in such a circumstance, especially since the death has occurred 
after the commencement of treatment. 
In the quest for a cure for HIV, many have claimed to have found the cure to this  
disease (New Mexico AIDS Education and Training Centre, 2005). This may be 
grounded on false belief systems, desperation for a cure or mere financial opportunism. 
The result is that many alternative ?cures? have been publicised and to a desperate public, 
this may be viewed as convincing.  
Patient 4 mentioned one such alternative cure, namely multivitamins. 
  
Because every time one listens to the radio ? you hear different 
stories?They tell you that, ?I was very, very sick, then I went 
and got multivitamin.? You see those things. So people, they 
don?t know if the retrovirals are working?Because they think it 
could be the multivitamins?And that can just confuses everyone 
(Patient 4). 
 
The above excerpt refers to a patient that was taking multivitamins in conjunction 
with his ART. When improvements were noted, it was not clear to him whether this was 
a result of the ART or the multivitamins. This could cause confusion, as should a patient 
decide that his or her recovery is due to the multivitamins, then he or she may cease his 
or her treatment. This is of special significance, as many vitamins and immune boosters 
have recently been advertised as potential cures. Adherence intervention would need to 
explain to patients the role of such additional treatment i.e. they serve to boost the body?s 
immune system but do not serve to suppress the virus.  
The political controversy around HIV/AIDS policy in South Africa has received 
wide coverage (Butler, 2005; Mbali, 2004). A government of a country plagued by the 
virus appeared initially hesitant to provide ART to its citizens (Mbali, 2004). These 
actions could have influenced patients against ART. Patient 6 shared one such opinion on 
the government and ART.  
 
My sister used to say that our Government is very clever.  He 
must first find out what the after effects of the medication, he 
wants to do proper research.  Because the Americans just wants 
to dump things on us and he first want to find out what other 
 64 
long term after side effects and so on, and she thought it was 
right of him to take time, and to research on it and all that 
(Patient 6). 
 
In the above extract, Patient 6 refers to her sister who was of the opinion that 
ART has not been adequately tested for long-term side effects. She believed that the 
Americans were using the South African population as guinea pigs and that the 
government?s hesitance to roll out ARVs was so that they could run further tests on the 
medication. The present study does not aim to establish whether this is true or not, neither 
does it aim to take a political stance toward HIV related issues. Rather, the research aims 
to highlight that the political context in which perceptions of ART are situated must be 
considered in adherence intervention. This may mean that adherence intervention may 
have to nurture attitudes that may not always be in keeping with government opinions, 
which may prove to also come with its own complications. 
 
An itinerant lifestyle 
An itinerant lifestyle is the term given to one whose lifestyle involves much 
travelling. This is of particular significance in South Africa, as many have migrated to the 
cities for employment and yet still have family back home. It appears that this type of 
lifestyle may hinder an individual?s capacity to adhere to his or her medication regimen. 
Weiser et al. (2003) highlighted travel and migration as a barrier to adherence. A study of 
HIV-positive patients? travel patterns and associated behaviour revealed that travel was 
associated with poor adherence and risky sexual practices (Salit, Sano, Boggild & Kain, 
2005).  
Disclosure of one?s status to the family appears to be one such mediator of poor 
adherence. Perhaps the pressure of disclosing an individual?s status to his or her family is 
overwhelming or those in more rural areas may not be educated and may not understand 
when family members disclose their status. The patients highlighted this, leading one to 
believe that an itinerant lifestyle is an important consideration for adherence.  
Ja. We used to tell them, please disclose your status because 
when you are in Johannesburg, it?s easy for you to take 
medication but when you go there to your family, your family 
doesn?t know nothing about your status, then, it?s going to be 
tough for you to take your medication and it?s true. People take 
 65 
their medication when they are here but when they go to their 
places like Natal or Lesotho, they don?t (Patient 3). 
 
Ja. Some of them they don?t take the medication at home, but 
some of them they decided to take the medication now (Patient 
5). 
 
Being at home is quite difficult, but it is up to you.  Its your life 
and it is not someone else?s life it is your life to know you must 
take treatment (Patient 7). 
 
The above three accounts demonstrate that patients do find it more difficult to 
adhere to their medication regimen when they are at home, however none offered any 
explanations for this. The difficulty of taking medication at home is something that would 
need to be explored further in order to investigate the dynamics contributing to the 
difficulties faced.  
Patient 6 articulated the difficulties of adherence related to an itinerant lifestyle in 
a slightly different manner. 
 
Ja, that maybe at night, maybe after visiting and normally I take 
my medication 8.00 or 9.00 and remember and 10 or 11 or so, 
but at a later stage, my sister says put tablets in the car, so where 
I went, I drink them, but there were times where I forgot (Patient 
6). 
 
She refers to forgetting to take her medication when she goes visiting and has 
admitted that even though her sister did keep tablets in the car for her, she still forgot to 
take them at times. This could be related to a break in her daily schedule or perhaps a fear 
of taking the medication in public. Adherence is possibly better achieved if one keeps a 
routine. However, this is not always  possible when an individual is travelling and he or 
she would need to develop strategies for such circumstances. 
 
Quantity of medication 
The quantity of medication in the prescribed regimen has been seen to affect the 
individual?s level of adherence. The frustration surrounding large quantities of 
medication as a barrier to adherence, has been well documented (Figueiredo et al., 1998; 
Ickovics & Meade, 2002; Mann et al., 2000; Therrien, Mailhot & Gagnon, 1998). In 
effect, the more medication there is, the more difficult it will appear to be to remember to 
 66 
take it. In addition, the more medication there is, the more complex the regimen becomes. 
One would need to consider that the doses, times and dietary requirements of the 
different medications may not be the same, thus further increasing the complexity of the 
regimen.  
Though this issue was raised by only one patient participant, it?s extensive 
coverage in the literature and its prominence in the interview transcripts justified its 
discussion. 
 
People, they say that this medication is too much for 
them?Like, Stockrin. You take 3, then 3TC 1, D 14, 1, in fact D 
14  is twice a day, 3TC is twice a day. Stockrin is 3, once and 
maybe Bactrim and vitamin B and vitamin C. Sometimes that 
person got TB. They feel, those people, that the medication is too 
much and they ignore to take the medication (Patient 3). 
 
Patient 3, above, refers to a typical medication regime and attempts to 
demonstrate how it?s complexity and the quantity of medication may affect patients? 
levels of adherence. An important factor raised by the above excerpt is the fact that the 
patient?s regimen is not always limited to the ARVs. Patients may present with a range of 
illnesses due to their susceptibility to infection and may need to take more medication in 
addition to ARVs (Chung et al., 2002; Ickovics & Meade, 2002). This may also be in 
conjunction with vitamins, which may be needed to aid the immune system. On the 
whole, it leads to a complex regimen with different medications, treating different 
illnesses. Such a difficult regimen would be difficult to adhere to. 
 
Side effects 
There appears to be an association between levels of adherence and the side effects 
experienced. This has been documented in the literature (Berg et al., 2004; Godin et al., 
2005; Ickovics & Meade, 2002; Lucas, et al., 2004; Mann et al., 2000; Weiser et al., 
2003) and it appears that bad side effects of a medication are a common reason for 
patients not adhering to their treatment. Side effects of ART include but are not limited to 
diarrhoea, fatigue, nausea, vomiting, peripheral neuropathy, metabolic changes (Max & 
Sherer, 2000) and lipodystrophy (Corless et al., 2005). The AIDS Clinical Trial Group 
 67 
370 found that adverse side effects was the strongest predictor of non-adherence 
(Ickovics & Meade, 2002). Even if one decides to use additional medication to manage 
the side effects, this further increases the quantity of medication and subsequently the 
complexity of the regimen, thus hindering adherence (Figueiredo et al., 1998; Ickovics & 
Meade, 2002; Mann et al., 2000; Therrien et al., 1998). 
The patients raised the issue of side effects affecting adherence. 
  
?So, people, they don?t want to take medication because of side 
effects ?(Patient 3). 
 
I think why people are denying the treatment, actually I cannot 
say they forget, they are denying the treatment, especially the 
evening treatment, with the Stockrin, it is because of the side 
effects.  Because of the bad dreams at night, maybe they are 
afraid, because you dream something that you have never seen in 
your life. they have never dreamt before.  But they should carry 
on taking it, although the side effects and those bad dreams, 
because after time, they dream normally.  It won?t happen 
anymore (Patient 7). 
 
Patient 7 observed that the vivid nightmares associated with the medication 
served as a barrier to taking the ART. She felt that experiencing these nightmares were 
frightening but also explained that this side effect is temporary and that should the person 
continue to adhere, the nightmares would eventually pass. This is relevant in the 
consideration of adherence and the temporality of the negative side effects is something 
that should be focused on in adherence intervention. Patient 3 did not discuss any specific 
side effects but supported Patient 7?s narrative by stating that patients do not adhere to 
medication due to the side effects of the medication. 
 
Human error 
Forgetfulness was highlighted as one of the reasons for poor medication compliance. It 
appears that time-keeping devices such as alarms may serve as a reminder to take 
medication (Mannheimer, Hirsch & el-Sadr, 1998) but one may forget to set the alarm as 
can be noted by Patient 4 below. In addition, as noted in the excerpt above, forgetfulness 
may also be an unconscious effort to avoid the side effects of the medication. The 
 68 
patients felt that forgetfulness was a reason for poor adherence. This is supported by the 
literature (Shernoff, 2001). 
 
Actually I use to set my alarm, and I use my cell phone as a time 
beeper.  So at that time I think I forgot to put my alarm, but I 
took them.  I still took them, because I am taking my medication 
at 8.00, I remember at about half past ten, but I took them 
(Patient 4). 
 
When I wake up in the morning before six, she is not up.  And 
then I get busy working, and doing the washing and then I forget, 
and then I remember I didn?t give her the medication then I go 
back and give her medication (Patient 5). 
 
No, weekends ja, maybe Sunday mornings.  During the week 
when I was working, I was taking  every day the same time but 
weekends and I never used to take it at the same time as during 
the week, because I used to sleep till late.  Now I am up, its time 
to go to church, I bath, I don?t eat.  I run to church and when I 
come back, I eat and I take my tablets (Patient 6). 
 
From the above patient accounts, it would appear that a break in one?s schedule 
could lead to forgetfulness. Patient 6, who appears to remember her medication during 
the week, tends to forget on the weekends because of the break in routine. It seems that 
time keeping devices are not always effective and hence future considerations of 
adherence will need to focus on generating more creative methods of time keeping. 
 
Dietary Requirements 
One of the factors that contributes to the complexity of adherence in ART are the dietary 
requirements associated with the medication. Certain tablets need to be taken on an 
empty stomach while others need to be taken with food. This becomes an issue of 
concern, especially in poorer communities, where the availability of food, let alone 
nutritious food, cannot always be expected. A balanced diet, high in vitamins and 
minerals is needed to supplement the ART in boosting the immune system but such a diet 
is not easily available. Again, even though only one patient highlighted diet as a barrier to 
adherence, its coverage in the literature warrants its discussion. 
    
Another thing is, you can have the proper medication, but if you 
don?t have proper food, like I am a single parent, and I used to 
have the medication here, but at times I would feel that I am 
 69 
weak from not eating, and not really sick but I still feel weak, 
and the minute I eat a piece of pumpkin when I go somewhere or 
visit someone, I feel better  (Patient 5). 
 
Patient 5 shared her experience of feeling weak, due to not having enough food and 
feeling better after she had eaten something. It is hypothesized that this is a similar 
experience of those who do not have enough food, and is something that must be 
considered. 
 70 
Patient recommendations for improving adherence  
 
As with the expert recommendations, the following section is comprised of 
recommendations that were directly cited in the patient interviews, as well as 
recommendations that were inferred from the discussion of the patient?s perceptions of 
the obstacles to adherence.  
 
Witnessed improvements 
Five of the eight patient participants mentioned either themselves or others 
witnessing the effectiveness of ARVs. This means that viewing improvements after 
taking ARVs had a significant impact on these patients to the point that they felt that their 
own experiences and those of others were worth mentioning. The accounts of witnessed 
improvements were revealed in response to the enquiry of participants? perceptions of 
ARVs. Thus, it can be said that witnessed improvements have a direct effect on an 
individual?s perception of ARV efficacy. It is felt that there is possibly no other better 
advocate for ARVs then witnessed efficacy.  
The literature surveyed however failed to cover this aspect. However, it can be 
seen that witnessed improvements could serve as a motivator of ARV adherence. This 
means that adherence interventions should also focus on sharing success stories.  Though 
this is the rationale behind group intervention, perhaps those who have witnessed 
improvements should be encouraged and trained to be spokespersons or counsellors 
around adherence. Their stories could possibly serve to counteract the effects of 
conflicting messages as identified in the expert interviews. 
 
I start to be sick. I?ve got sores all over the body. And I came back to the 
hospital. Then, I used to come here to Helen Joseph and met another 
doctor. When I came, I met only one doctor. By that time they tell me, 
?You are very, very sick. Don?t you think you must start taking ARVs??   
?ARVs, whats that?? ?It is the medication for HIV. You?ll be better.?? 
So I took them from October, November, December, January, February, 
March, April. In April, they sent me to come and collect them here from 
the hospital because government bring them to the hospital. And, I start 
to take them from the hospital and up to now, I?m still fine?It works 
because at that time,I was losing lots of weight. I was wearing size 28. 
By that time I was having lots of sores but now I?m fine (Patient 3). 
 
 71 
I felt worse, until antiretrovirals was so helpful because I was very, very 
sick, and then I got the access to the antiretrovirals.  I resigned from my 
previous job.  I am an ex-cop, and after I resigned I was very, very sick 
and after I got the anti-retrovirals, I was well. I was able to work and I 
was able to do everything, and I applied for a job.  I am now a 
counsellor, so I feel very very good? I was maybe 46kg, then I gained 
weight and I am eating a lot, and I can feel the difference, when I was 
sick, and with the antiretroviral.  Now I can see the difference (Patient 4). 
 
I can be in the bed in the hospital.  It is hard.  I was admitted for about a 
month, so I think about all these things so that is why I am always taking 
my treatment (Patient 7). 
 
The above accounts represent patients? accounts of how they have witnessed 
improvements of their physical health due to ART. These improvements vary from the 
disappearance of stomach ailments and body sores, weight gain and an overall increase in 
gene ral functioning. The effect of witnessing these improvements has led to a belief in 
the efficacy of the treatment. At the time of the interviews, the above patients reported 
maximum compliancy, which leads one to believe that believing in the treatment plays a 
role in the individual?s levels of adherence. This has implications for further research. 
Should the belief in efficacy serve as a motivator of adherence levels, then further 
research would need to investigate the various factors affecting patients? beliefs in 
efficacy.  
 
Social support  
One of the main motivators for disclosure, as highlighted by the expert narratives, is the 
potential acquisition of support to assist one with taking their medication.  Three patients 
highlighted that social support would improve one?s level of adherence. 
There must be someone who will be responsible for that 
particular person, to help him or her with the medication 
(Patient1).  
 
Disclosure, its very important, because if you know I am HIV 
and we are friends, and you come and visit me, and it is time we 
have to go somewhere, you?ll tell me not to forget my tablets, so 
if you don?t know, you wont tell me that (Patient 6).  
 
You can even have a calendar to just to tick ? have your taken 
the morning treatment / dose or evening dose.  You should tick 
and see when you forgot to take the medication, so you must 
 72 
have a calendar and a person to assist him or her, anytime, a 
sister, wife, husband (Patient 7). 
 
From the above, it appears that having someone to assist you with taking the 
medication makes it that much easier to adhere. It is thus recommended that adherence 
intervention continue to focus on generating support for patients. This may take the form 
of encouraging disclosure or engaging patients in support groups so that they may be 
exposed to other individuals in similar predicaments to themselves. However, patients 
must be encouraged to disclose their status only when they feel it is safe to do so. It is not 
uncommon to hear of HIV-positive individuals that have been victims of discrimination 
and it would be unfortunate if patients were exposed to this following disclosure. 
 
Timing mechanisms 
Five patients found that time-keeping mechanisms helped them to remember to take their 
medication. The use of time-keeping devices to aid adherence was supported by the 
literature surveyed (Mannheimer et al., 1998). 
Okay, see the nurse make the calendar? They tell me when to 
take the tablets. Then, we got the paper to make the calendar and 
it tell me when to come back. So, I know everyday. And then I 
know not to forget. You see you take the tablet on the calendar. 
(Patient 2) 
 
By 8 o?clock I know, when it?s ?Generations?. Sometimes I?m 
watching news and when it?s finished I know it is time t o take 
the medication?Yes. Because sometimes you forgot to set cell 
phone. Sometimes, you don?t have cell phone. So, sometimes 
you can use soapies or something else to remind yourself.  
(Patient 6) 
 
You can even have a calendar to just to tick ? have your taken 
the morning treatment / dose or evening dose.  You should tick 
and see when you forgot to take the medication, so you must 
have a calendar and a person to assist him or her, anytime, a 
sister, wife, husband. (Patient 7) 
 
The above excerpts demonstrate the usefulness of cellular phones to set reminders 
to take medication, as well as calendars to keep track of medication and appointments. A 
creative reminder appeared to be the association between a television programme that 
screens at the same time everyday and taking one?s medication. Hence, it can be seen that 
 73 
patients find such time keeping strategies effective in reminding them to take their 
medication. However, of concern, is the fact that one has to remember to set these alarms. 
So, even though such strategies may help to improve adherence, the y may not be 
sufficient in ensuring maximal adherence. 
 
Antiretroviral awareness 
The patients felt that an increase in antiretroviral awareness could aid in improving 
patients? levels of adherence. The rationale behind this was that if patients were more 
aware of HV and antiretroviral medication, this would facilitate better adherence. 
I think we have to go to schools, to make lots of adverts and 
famous people like, for example like, Mandela talking about his 
son. People were coming ad saying that Mandela was taking 
about his son. Black people must get tested (Patient 3). 
Ja, if they can make more   ? If they can use media, or TV or to 
educate people about HIV about the antiretrovirals. The 
antiretrovirals are new, about a year now, so people do not know, 
so they must advertise ? we?ve got this antiretrovirals now so 
people must know. They must tell people the institutes where the 
antiretrovirals are available, because people they still sit and they 
die, because they do not have access to the antiretrovirals? 
Everywhere.  Posters and banners everywhere.  Newspapers. 
(Patient 4). 
 
The patients felt that the media could be used as a medium of increasing 
awareness. Patient 3 mentioned that it would be beneficial if important figures in the 
country spoke openly about HIV, as this would impact on patients. Patient 4 felt that 
because ART has only recently been introduced to the public health sector, one needs to 
advertise that ART exists because there are those that are ignorant of this option and face 
death as a consequence.  
 
We have to make sure ... like sometimes, that person maybe she 
don?t understand you, you must make sure that you book her for 
another appointment to make her to come back and understand 
about this medication (Patient 3). 
 
I think people need to do counsellation more especially.  And 
their families, they need a workshop or something like that, and 
to take care of the patient or the person who is affected to see 
that the taking the tablets accordingly  (Patient 7). 
 
 74 
Patient 3 and Patient 7 felt that counselling around adherence would be beneficial 
to the patient. Patient 3 highlighted that in certain instances, a patient may still not 
entirely understand the dynamics around antiretroviral medication, even after 
counselling. In such a situation, she advised that it was necessary to repeat the psycho-
 education until the patient grasped the importance of maximal adherence. Patient 7 felt 
that counselling should include members of the person?s family, probably in an effort to 
increase the individual?s support system.   
 
Alcohol and substance use 
The literature has covered the association between alcohol or substance use and 
adherence extensively (Heckman et al., 2004; Ickovics & Meade, 2002; Kalichman & 
Rompa, 2003; Rothlind et al., 2005; Shernoff, 2001 ; Ware et al., 2005 ). Hence, the 
negative effects of alcohol and drugs on medication compliance cannot be denied and 
health care professionals would need to screen for alcohol and substance dependency 
prior to administering the medication and possibly refer to rehabilitation facilities. Those 
who are perceived to be either alcohol or substance dependent could then be reviewed 
after rehabilitation to see if they were candidates for ART. However, a study in Boston 
(2005) found that such an intervention did not improve adherence levels or decrease 
alcohol consumption, supporting the idea of supervised medication delivery and 
simplified medication doses (Samet, Horton, Meli, Dukes, Tripps, Sullivan & Freedberg, 
2005).  
 
Conflicting messages 
Three recommendations emerged from the discussion around conflicting 
messages. It was felt that one may be able to confront opinions opposing ART, if the 
following was undertaken. Firstly, it was recommended that the political context in which 
perceptions of ART are situated must be considered in adherence interventions. This may 
mean that adherence interventions may have to nurture attitudes that may not always be 
in keeping with government opinions, which may prove to also come with its own 
complications. 
Secondly, it was acknowledged that to an individual who is ignorant of the 
intricacies of HIV and ART, it would be easy to make the association between ART and 
 75 
death, especially since the death may occur after the commencement of treatment. Hence, 
it was, recommended that adequate psycho-education about HIV, immunity and ARVs be 
conducted in an effort to challenge such associations.  
Thirdly, adherence interventions would need to explain to patients the role of 
additional treatment such as vitamins in the treatment programme, that is that. they serve 
to boost the bodies immune system but do not serve to suppress the virus. Hence, there 
needs to be an emphasis on the additional medication as a supplement rather than a 
substitute for ART and then, only if the additional medication does not decrease the 
efficacy of the ART. 
 
 76 
CHAPTER FIVE: DISCUSSION 
 
The following chapter discusses pertinent observations made in relation to the expert and 
patient interviews that did not fit into the four themes discussed in chapter four, but 
none theless deserved mention in this research report. 
 
THE USE OF THE WORDS ?ADHERENCE? AND ?COMPLIANCE? 
The author had found that the words ?adherence? and ?compliance? were used 
synonymously in the literature. It was therefore not surprising that the interviews 
conducted reflected the use of both words. However, Experts 3 and 4 highlighted a 
significant distinction between the two words, while Experts 1 and 2 failed to use the 
word ?compliance? at all. 
Compliance, more gives you the idea of the patients following an 
instruction. It has something to do with obedience, whereas 
adherence is a more active participation of the patient, where he 
takes responsibility for himself, and understands as much of the 
picture as possible, so that he can buy into, and to operate and 
participate in something that going to be beneficial for his own 
health (Expert 3). 
 
And I believe the better word is ?adherent?, rather than 
?compliant.  Compliant is kind of associated to a doctor?s 
instruction rather than a choice (Expert 4). 
 
Of interest was the manner in which Expert 4 responded to the author?s incorrect 
usage of the word ?compliant?.  He was quick to correct the author, indicating that the 
two words are associated with different subtexts.  
An analysis of the expert dialogues indicates that the word compliance is 
associated with an instruction, implying a non- involvement of the patient in decision- 
making in respect of his or her treatment regime. Adherence, on the other hand is 
associated with a sense of empowerment on the part of the patient where he or she has a 
choice whether to follow his or her regime or not. 
A further analysis of the literature revealed that the word ?adherence? is used 
more frequently in psychological journals while the word ?compliance? appears more 
frequently in medical texts. 
 77 
A COMPARISON OF THE EXPERT AND PATIENT INTERVIEWS 
Before discussing the similarities and differences of the expert and patient excerpts, it is 
necessary to comment on the context grounding their responses in the interviews. The 
expert participants had generated their opinions from at least two years of working within 
the HIV/AIDS field. Hence, their opinions were based on their specific training, which 
influenced the manner in which they conceptualised the issues pertaining to adherence, in 
addition to their exposure to others? experiences. This could explain why Expert 4 offered 
many psychological explanations to account for patient behaviour, while Experts 1 and 3, 
who dealt directly with the patients, offered suggestions of more practical, as opposed to 
theoretical, nature. Expert 2 reported to be currently on ART, hence his opinions were not 
only from his work experience but from his own personal experience of being on ART as 
well.  
The patient responses were based on their own personal experience of the 
medication. Hence, they articulated what they felt were the ?real-life? issues that 
influenced their levels of adherence. This was based on their own perceptions of which 
aspects of their lifestyle and behaviour prevented them from adhering to their medication 
regime. 
  When one combines the inputs of both the experts and patients, it becomes 
apparent that the barriers to adherence can be conceptualised at a macro- level and at a 
micro- level. Those concerns that are pitched at the level of the community and that are 
situated in the political climate, such as a lack of education and poverty, are macro- level 
or systemic concerns. The concerns surrounding the patient lifestyles, such as dietary 
requirements and the quantity of medication, are concerns that can be conceptualised at a 
micro- level because they are situated in the context of the patient themselves. However, 
the two levels are related. Problems related to poverty at the macro- level will impact on 
whether a patient, at the micro- level, has food or not and is able to follow the nutritional 
requirements necessary.  
When comparing the expert and patient responses it was seen, firstly, that the 
experts? perceptions of the barriers to adherence appeared to be focussed on a more 
systemic level than the patient perceptions of the barriers to adherence that seemed to be 
focussed on barriers experienced at a more micro- level. An example of this is the experts? 
 78 
consideration of psychological factors, the challenges in specific communities and 
political issues. The association between these factors and adherence levels cannot be 
denied and in most cases were also supported by the surveyed literature. However, it 
must be noted that these factors are systemic and would require macro- level 
interventions. The patients on the other hand, spoke of personal barriers that they had 
experienced and hence, their perceptions of the barriers to adherence, such as side effects, 
dietary requirements and substance abuse were barriers that would need to be confronted 
at a more individual level. 
The above findings could be explained by the fact that the patients, who are 
directly affected by the barriers to ART, tend to examine what they have power over, 
namely their own lives. In comparison, the experts? training equips them with insights to 
look at factors from a more systemic perspective. Thus, to the patients, HIV/AIDS and 
ART are personal battles and the presence of HIV/AIDS in their lives is probably so 
overwhelming that all they can focus on is the direct association with themselves. On the 
other hand, to the experts, these issues cannot be separated from the political, economical 
and social contexts of the country.  
Secondly, the experts? perceptions of the barriers to adherence were concerned 
more with ?theoretical? or assumed concerns about political issues and stigma and 
discrimination, whereas the patients? perceptions of the barriers to adherence were 
centred around more practical concerns such as concerns about the medicine regimen. 
This could be because patients discussed those barriers that were of immediate concern to 
them, whereas experts could use their knowledge and expertise to conceptualise the 
problem more systemically, yet again. The concerns raised by both the experts and 
patients, however, were both supported by the literature, hence validating their concerns.  
The implications of these differences in the way we think about adherence is that 
adherence is a concept that has to be confronted on various levels from the individual to 
the community. The knowledge of the patients help to highlight problems at the level of 
the individual while the ?academic? knowledge and work expertise of the experts may 
help us to conceptualise the problem of adherence at a more systemic or global level. 
Thus, in sum, the expert and patient interviews have demonstrated that adherence 
needs to be conceptualised at both a systemic and individual level. This means that 
 79 
adherence intervention needs focus on implementation at both these levels. Macro- level 
intervention,  however, is generally concerned with nurturing broader social change, 
which may require more long-term intervention. It must be noted that some of the 
systemic level barriers such as poverty cannot be seen as barriers exclusive to ART 
adherence. Rather, poverty probably contributes to many other problems within 
healthcare as a whole. Thus, we cannot deny the impact of these ?systemic? barriers on 
health-care as whole and intervention at this level would probably require the 
mobilisation of resources across all health-care infrastructure in the country to bring 
about social change.   
 
STRENGTHS AND WEAKNESSES OF THE RESEARCH 
A fundamental strength of the research lies in the profiling of the expert panel. All 
experts have worked for a long time in the HIV/AIDS field and have worked specifically 
with adherence to antiretroviral medication. Hence their recommendations were 
supported by years of experience. In addition, the range of professionals approached was 
fairly extensive, allowing representatives of all the key role-players concerned with 
adherence to antiretroviral medication to voice their opinions. 
A further strength of the research was the inclusion of the patients. This allowed 
the researcher to tap into knowledge from patients that were taking the ART. The 
inclusion of the patient participants emphasised the importance of local knowledge and 
gave this sector an opportunity to voice their concerns.  
Another strength of the research is the research methodology employed. Given the 
fact that adherence to antiretroviral medication is a fairly new research area in South 
Africa, the research methodology employed also allowed the researcher to provide an 
exploratory view of this area. The decision to not stipulate a hypothesis at the outset of 
the study allowed the researcher to focus on those themes that emanated from the 
participant excerpts and focus on those as hypotheses. In addition, the use of thematic 
content analysis allowed the researcher to explore these themes further.   
A potential weakness in the study is the small sample size, in spite of the fact that 
the 11 participants yielded a wealth of information. However, for the purposes of a 
qualitative study, the number of participants does suffice. 
 80 
Another potential hindrance to the research process came from the patient 
responses. It was found that patients were very hesitant to disclose poor adherence. All 
patient participants were part of antiretroviral programmes and all reported maximal 
adherence levels. Though it is very possible that all seven patients may have achieved 
maximal adherence, it is felt that patients may have been hesitant to disclose their true 
adherence levels as they felt it would affect their inclusion in the antiretroviral roll-out 
programme. The analysis of the patients? reports demonstrated that even if this was the 
case, the patients still yielded a wealth of information regarding barriers to adherence and 
recommendations for improvement, which were the aims of the research.  
 81 
CHAPTER SIX: CONCLUSION 
 
The research has thus explored the patients? and experts? perceptions of barriers to 
adherence and their recommendations for improving adherence. This chapter first looks 
at a summary of the recommendations generated from the interviews, followed by a 
presentation of those areas requiring further research. Since, the practical aim of the 
research was to generate recommendations for improving adherence, it was felt that it 
was necessary to present a summary of the recommendations generated from the expert 
and patient interviews. 
 
SUM MARY OF RECOMMENDATIONS 
Experts? recommendations 
From the expert interviews, the following recommendations for improving adherence are 
made: 
A greater focus needs to be placed on the health-care provider-patient 
relationship, in an effort to nurture a warm open relationship in which all concerns can be 
confronted (Godin et al., 2005; Heckman et al., 2004; Meredith et al., 2001; Murphy et 
al., 2004). This allows patients to confront conflicting messages, traditional belief 
systems and concerns about the medicine regime with their physician if an effort to 
facilitate a better understanding of HIV/AIDS and ART.   
. The co-morbidity of HIV and psychological illness and its impact on adherence to 
ART (Brief et al., 2004; Halkitus et al., 2005; Ickovics & Meade, 2002; Kalichman & 
Rompa, 2003; Malan, 2003; Moosa et. al., 2005; Phillips et al., 2005; Shernoff, 2001; 
Yun et al., 2005) suggests that screening measures for psychological illnesses and 
appropriate treatment if necessary should be implemented at the outset of the treatment. 
Avenues where patients can access support, such as support groups and the use of 
treatment supporters need to be identified. Patients need to be encouraged to seek family 
support and support through support groups; as support has been seen to improve 
adherence levels (Berg et al., 2004; Godin et al., 2005; Kumarasamy et al.; 2005). 
 82 
 There needs to be a greater focus on education, both at the individual and 
community level, in an effort to allow patients to understand the entirety of their disease 
and treatment options.  
Following more research in the area of traditional medicine, efforts need to made 
to integrate traditional and western belief systems in an effort to convince more patients 
to use ART.  
The link between levels of adherence and the socio-political context also suggest 
that adherence intervention could be guided by a community psychology approach, where 
communities are empowered to improve their socio-economic circumstances and, as a 
consequence, their level of health consciousness (Seedat et al., 2001). 
 
Patients? recommendations  
From the patient interviews, the following recommendations emerge: 
Given the motivational impact that witnessed improvements has upon adherence, 
it is recommended that ART-related success stories be given more coverage. 
Patients need to be encouraged to access support (Berg et al., 2004; Godin et al., 
2005; Kumarasamy et al.; 2005). 
Patients need to incorporate time-keeping devices into their lifestyles, to help 
them remember to take their medication. 
There needs to be an increase in antiretroviral awareness, in an effort to increase 
knowledge and facilitate informed decision making and health behaviour in relations to 
medication.   
Given the association between poor adherence and alcohol and/or substance use, 
there need to be screening measures for alcohol and/or substance use at the outset of 
treatment and rehabilitation if necessary in an effort to ensure maximal adherence 
(Heckman et al., 2004; Ickovics & Meade, 2002; Kalichman & Rompa, 2003; Rothlind et 
al., 2005; Shernoff, 2001; Ware et al., 2005 ). 
 
 83 
AREAS FOR FUTURE RESEARCH 
The following areas were highlighted as areas for further research:  
The relationship between forgetfulness and adherence needs to be explored 
further. One patient participant claimed that forgetfulness was an unconscious effort to 
avoid the side effects of the medication while an expert participant stated that perhaps it 
is wilfulness that affects forgetfulness. This perhaps highlights that the mere act of 
forgetting to take o ne?s medication is a complex issue and for this reason requires further 
research.   
It became evident that certain communities face community-specific challenges, 
as was seen in the prison community and black communities. This suggests that further 
research be done at the level of the community so that these challenges can be 
highlighted.  
The experts noted that there are complex gender dynamics that affect adherence 
levels. The issue of gender and adherence is something that requires further research. 
Should findings be similar to the experts? opinions, then adherence interventions may 
need to be addressed as a couples issue (Remien et al., 2005). 
More research around the area of traditional medicine is also needed, as this is an 
area that competes with the philosophy of ART.  
Some patients, even in the context of appropriate adherence interventions, have 
failed to take their medication. The patients labelled this as a failure to take responsibility 
for one?s life. Such patients need to be investigated to examine if there were any other 
factors that contributed to their poor adherence and what could serve to motivate them in 
future. 
 
In conclusion, it can be seen that the expert and patient interviews yielded valuable 
information regarding the perceptions of barriers to adherence and their recommendations 
for improving adherence.  The difference between the expert and patient 
recommendations have implications on how we conceptualise adherence. The concept of 
adherence needs to be confronted at both an individual and community level and this 
must be considered in future adherence interventions. 
 
 84 
REFERENCES  
Becker, M. H. and Clark, N. M. (1998). Theoretical Models And Strategies For 
Improving Adherence And Disease Management. In S.A. Shumaker, E.B. Schron, 
J.K. Ockene and W.L. McBee (Eds), The handbook of health behaviour change (2nd 
Edition), (pp. 5-31). New York: Springer Publishing. 
Berg, K.M., Demas, P.A., Howard, A.A., Schoenbaum, E.E., Gourevitch, M.N.  and 
Arnsten, J.H. (2004). Gender differences in factors associated with adherence to 
antiretroviral therapy. Journal of General Internal Medicine, 19(11), 1111 ? 1117. 
Berlant, N.E. and Pruitt, S.D. (2003). Adherence to medical recommendations. In L.M. 
Cohen, D.E. McChargue and F.L. Collins (Jr.)(Eds) The health psychology handbook: 
Practical issues for the behavioural medicine specialist (pp. 208-223). California: 
SAGE. 
Blanco, J.M.S., Perez, I.R., De Labry Lima, A.O.,  Recio, J.M., Lopez, E.G. and Basanta, 
J.J.A. (2005). Adherence to antiretroviral treatment in prisons. AIDS Research and 
Human Retroviruses, 21(8), 683 ? 688. 
Brief, D.J., Bollinger, A.R., Vielhauer, M.J., Berger-Greenstein, J.A., Morgan, E.E., 
Brady, S.M., Buondonno, L.M. and Keane, T.M. (2004). Understanding the interface 
of HIV, trauma, post-traumatic stress disorder, and substance use and its implications 
for health outcomes. AIDS CARE, 16(1), 97 ? 120. 
Buick, D., Fisher, M., Horne, R. and Leake, H. (2004). Doubts about necessity and 
concerns about adverse effects: Identifying the types of beliefs associated with non-
 adherence to HAART. International Journal Of STD and AIDS, 15(1), 38 ? 44. 
Burke, L.E., Dunbar-Jacob, J.M., Schlenk, E.A. and Matthews, J.T. (1998). Predictors of 
patient adherence: Patient characteristics. In S.A. Shumaker, E.B. Schron, J.K. 
Ockene and W.L. McBee (Eds), The handbook of health behaviour change (2nd 
Edition) (pp. 5-31). New York: Springer Publishing. 
Butler, A. (2005). The negative and positive impacts of HIV/AIDS on democracy in 
South Africa. Journal of Contemporary African Studies, 23 (1), 1-24. 
Chung et al., W.Y.R., Lam, S.W.C., Lau, T.F.J., Li, C.K.P., Nahas-Lpez, V. and  
Molassiotis, A. (2002). Factors associated with adherence to antiretroviral medication 
in HIV- infected patients. International Journal of STD and AIDS, 13, 301 ? 310. 
 85 
Cole, J. (2005). Traditional healing in South Africa. Equal Treatment, 15 (3), 3. 
Corless, I.B., Kirksey, K.M., Kemppainen, J., Nicholas, P.K., McGibbon, C., Davis, S.M. 
and Dolan, S. (2005). Lipodystrophy-associated symptoms and medication adherence 
in HIV/AIDS. AIDS Patient Care and STDs, 19(9), 577 ? 586. 
Department of Health (2004). National antiretroviral treatment guidelines. 
Johannesburg: Jacana. 
Dorrington, R., Bradshaw, D. and Budlender, D. (2002). HIV/AIDS profile in the 
provinces of South Africa: Indicators for 2002. Tygervalley: Burden of Disease 
Research Unit, Actuarial Society of South Africa & Centre for Actuarial Research. 
Drugweek. (2004). Schizophrenia; Patients don?t take antipsychotic medication 
regularly. Retrieved on 24 April 2004 from http://newsrx.com/ 
Duke University. (2001). Now that you are on antiretroviral therapy. Retrieved on 24 
April 2004 from http://www2.mc.duke.edu/aids/educate/antiret.htm 
Figueiredo, R.M., Sinkoc, V.M., Colombrini, M.R., Assumpcao, I.S., Cavinatto, S.M., 
Tomazin, C. and Gallani, M.C. (1998). Adherence of patients with AIDS to treatment 
with antiretroviral medications: difficulties related and proposition of attenuating 
measures. International Conference AIDS, 12, 862. 
French, T., Weiss, L., Waters, M., Tesoriero, J.,  Finkelstein, R., and Agins, B. (2005). 
Correlation of a brief perceived stress measure with nonadherence to antiretroviral 
therapy over time. Journal of Accquired Immune Deficiency Syndromes, 38(5), 590 ? 
597. 
Gallant, J.E. (1995). Update on antiretroviral therapy. Baltimore: The John Hopkins 
University School of Medicine. 
Gifford, A., Bormann, J., Shively, M., Wright, B., Richman, D. and Bozzette, S. (2000). 
Predictors of self reported adherence and plasma HIV concentrations in patients on 
multidrug antiretroviral regimens. Journal of Accquired Immune Deficiency 
Syndrome, 23 (5), 386-395. 
Godin, G., Cote, L., Naccache, H., Lambert, L.D., and Trottier, S. (2005). Research 
group on behaviours in the field of health, AIDS Care, 17(4), 493 ? 504. 
 86 
Halkitus, P.N., Kutnick, A.H. and Slater, S. (2005). The social realities of adherence to 
protease inhibitor regimens: substance use, health care and psychological states. 
Journal of Health Psychology, 10(4), 545 ? 558. 
Haynes, R.B. (2001). Improving patient adherence: State of the art, with a special focus 
on medication taking for cardiovascular disorders. In L.E. Burke and I.S. Ockene  
(Eds), Compliance in healthcare and research. New York: Futura Publishing. 
Heckman, B.D., Catz, S.L., Heckamn, T.G., Miller, J.G. and Kalichman, S.C. (2004). 
Adherence to antiretroviral therapy in rural persons living with HIV disease in the 
United States. AIDS Care, 16(2), 219 ? 230. 
Homsy, J., King, R., Balaba, D. and Kabatesi, D. (2004). Traditional health practitioners 
are key to scaling up comprehensive care for HIV/AIDS in sub-Saharan Africa. 
AIDS: Official Journal of the International AIDS Society, 18 (12 ), 1723 ? 1725. 
Ickovics, J.R. and Meade, C.S. (2002). Adherence to HAART among patients with HIV: 
Breakthroughs and barriers. AIDS Care, 14, 309 ? 318. 
Jenkins, L. (2003). Prevention of mother?to-child transmission of HIV. Johannesburg: 
Chris Hani Baragwanath Hospital Perinatal HIV Research Unit. 
Kalichman, S. C. and Rompa, D. (2003). HIV treatment adherence and unprotected sex 
practices in people receiving antiretroviral therapy. Sexually Transmitted Infections, 7 
(1), 59 ? 61. 
Karim, S.S.A., Karim, Q.A., Friedland, G., Lalloo, U. and El Sadr, W.M. (2004). 
Implementing antiretroviral therapy in resource-constrained settings: Opportunities 
and challenges in integrating HIV and tuberculosis care. AIDS: Official Journal of the 
International AIDS Society, 18(7), 975 ? 979. 
Kimmerling, M., Wagner, G. and Ghosh-Dastidar, B. (2003). Factors associated with 
accurate self- reported adherence to HIV antiretrovirals. International Journal of STD 
and AIDS, 14 (4), 281 ? 284. 
Kumarasamy, N., Safren, S.A., Ramimani, S.R., Pickard, R., James, R., Krishnan, 
A.K.S., Solomon, S. and Mayer, K.H. (2005). Barriers and facilitators to 
antiretroviral medication adherence among patients with HIV in Chennai, India: a 
qualitative study. AIDS Patient Care and STDs, 19(8), 526 ? 537. 
 87 
Liechty, C.A. and Bangsberg, D.R. (2003). Doubts about DOT: Antiretroviral therapy for 
resource-poor countries. AIDS: Official Journal of the International AIDS Society, 17  
(9), 1383 ? 1387. 
Lucas, G.M., Wu, A.W. and Cheever, L.W. (2004). Adherence to antiretroviral therapy: 
An update of current concepts. Current HIV/AIDS Reports, 1(4), 172 ? 180. 
Maenza, J. (1998). Combination antiretroviral therapy for HIV infection. Maryland: John 
Hopkins School of Medicine. 
Malan, J. (Ed). (2003). HIV in our lives. A book of information sheets for people living 
with HIV, support groups and clinics. Johannesburg: AIDS Law Project & Treatment 
Action Campaign. 
Manci, M. (2005). A traditional healer?s opinion. Equal Treatment, 15 (8), 8. 
Mann, T. and Roberts K.J. (2000). Barriers to antiretroviral medication adherence in 
HIV- infected women. AIDS Care, 12, 377 ? 386. 
Mannheimer, S., Hirsch, Y. and el-Sadr, W. (1998). The impact of the ALR alarm device 
on antiretroviral adherence among HIV- infected outpatients in Harlem. International 
Conference AIDS, 12 585-586 
Mansfield, A.K., Addis, M. and Mahalik, J.R. (2003). ?Why won?t he go to the doctor??: 
The psychology of men?s help seeking. International Journal of Men?s Health.  
Retrieved on 27 June 2006 from 
http://www.findarticles.com/p/articles/mi_m0PAU/is_2_2/ai_107836730 
Max, B. and Sherer, R. (2000). Management of the adverse effects of antiretroviral 
therapy and medication adherence. Clinical Infectious Diseases, 30 (2), S96 ? S116. 
May, J., Govender, J., Budlender, D., Mokate, R., Rogerson, C. and Stavrou, A. (1998). 
Poverty and inequality in South Africa: A report prepared for the Office of the 
Executive Deputy President and the Inter-Ministerial Committee for Poverty and 
Equality. Retrieved on 24/03/2005 from 
http://www.polity.org.za/html/govdocs/reports/poverty/html  
Mbali, M. (2004, June). TAC in the history of rights-based, patient-driven HIV/AIDS 
activism in South Africa. Presented at a conference on ten years of socio -economic 
rights in South Africa. University of Oslo. 
 88 
Meredith, K.L., Jeffe, D.B., Mundy, L.M. and Fraser, V.J. (2001). Sources influencing 
patients in their HIV medication decisions. Health, Education and Behaviour, 28(1), 
40 ? 50. 
Miller, L.G., Liu, H., Hays, R.D., Golin, C.E., Beck, C.K., Asch, S.M., Ma, Y., Kaplan, 
A.H. and Wenger, N.S. (2002). How well do clinicians estimate patients? adherence 
to combination antiretroviral therapy? Journal of General Internal Medicine, 17(1), 1 
? 11. 
Montaner, J., Reiss, P., Cooper, D., Vella, S., Harris M., Cunway, B., Wainberg, M., 
Smith, M. Robinson, P., Hall, D, Myers, M. and Lange, J. (1998). A randomized  
double-blind trial comparing combinations of Nevaripine, Didanosine and 
Zidovudine for HIV- infected patients: The INCAS trial. Journal of The American 
Medical Association, 279, 930 ? 937. 
Moosa, M.Y.H., Jeenah, F.Y. and Vorster, M., (2005). HIV in South Africa ? depression 
and CD4 count. South African Journal of Psychiatry, 11, 12-15. 
Murphy, D.A., Marelich, W.D., Hoffman, D. and Steers, W.N. (2004). Predictors of 
antiretroviral adherence. AIDS Care, 16(4), 471 ? 484. 
New Mexico AIDS Education and Training Centre (2005). How to spot HIV/AIDS fraud. 
Retrieved on 14 March 2006 from http://www.aidsinfonet.org/ 
Ockene, J.K. (2001). Strategies to increase adherence to treatment.  In L.E. Burke and 
I.S. Ockene (Eds), Compliance In Healthcare And Research (pp. 43-69). New York: 
Futura Publishing. 
Oransky, I. (2003). African patients adhere well to anti-HIV regimens. The Lancet, 362 
(9387). 
Orrell, C., Bangsberg, D.R., Badri, M. and Wood, R. (2003). Adherence is not a barrier to 
successful antiretroviral therapy in South Africa. AIDS: Official Journal of the 
International AIDS Society, 17(9), 1369 ? 1375. 
Phillips, K.D., Moneyham, L., Murdaugh, C., Boyd, M.R., Tavakoli, A., Jackson, K. and 
Vyavaharkar, M. (2005). Sleep disturbance and depression as barriers to adherence. 
Clinical Nursing Research, 14(3), 273 ? 293. 
 89 
Popp, D. and Fisher, J.D. (2002). First, do no harm: a call for emphasizing adherence and 
HIV prevention interventions in active antiretroviral therapy programs in the 
developing world. AIDS: Official Journal of the International AIDS Society, 16 (4), 
676 ? 678. 
Remien, R.H., Stirratt, M.J., Dolezal, C., Dognin, J.S., Wagner, G.J., Carballo-Diegeuz, 
A., El-Bassel, N. and Jung, T.M. (2005). Couple-focused support to improve HIV 
medication adherence: a randomised controlled trial. AIDS: Official Journal of the 
International AIDS Society, 19(8), 807-814. 
Rothlind, J.C., Greenfield, T.M., Bruce, A.V., Meyerhoff, D.J., Flenniken, D.L., 
Lindgren, J.A. and Weiner, M.W. (2005). Heavy alcohol consumption in individuals 
with HIV infection: Effects on neuropsychological performance. International 
Neuropsychological Society, 11(1), 70 ? 83. 
Rowe, K.A., Makhubele, B., Hargreaves, J.R., Porter, J.D., Hausler, H.P. and Pronyk, 
P.M. (2005). Adherence to TB preventive therapy for HIV-positive patients in rural 
South Africa: implications for antiretroviral delivery in resource-poor settings? The 
International Journal of Tuberculosis and Lung Disease, 9(3), 263 ? 269. 
Salit, I.E., Sano, M., Boggild, A.K. and Kain, K.C. (2005). Travel patterns and risk 
behaviour of HIV-positive people travelling internationally. C M A J, 172(7), 884 ? 
888. 
Samet, J.H., Horton, N.J., Meli, S., Dukes, K., Tripps, T., Sullivan, L. and Freedberg, 
K.A. (2005). A randomised controlled trial to enhance antiretroviral therapy 
adherence in patients with a history of alcohol problems. Antiviral Therapy, 10(1), 83 
? 93. 
Seedat, M. (Ed.), Duncan, N. and Lazarus, S. (Cons. Eds) (2001). Community 
psychology, theory, method and practice. Cape Town: Oxford University Press. 
Shernoff, M. (2001). HIV Medication Adherence. FAMA Five Borough AIDS Mental 
Heath Alliance, 3(2).  Retrieved on 16/04/2004 from 
 http://www.gaypsychotherapy.com/murray.htm 
Smith, M.K. (2002). Gender, poverty, and intergenerational vulnerability to HIV/AIDS. 
Gender and Development, 10(3), 63 ? 70. 
 90 
Steinman, L., Conlon, P., Maki, R. and Foster, A. (2003). The intricate interplay among 
body weight, stress, and the immune response to friend or foe. Journal of Clinical 
Investigation, 111 183-185. 
Stone, V.E. and Smith, K.Y. (2004). Improving adherence to HAART. Journal of the 
National Medical Association, 96(2), 27s ? 29s. 
The World Health Organisation. (1999). Encouraging adherence to medication. World 
Health Organisation Collaborating Centre for Mental Health and Substance Abuse. 
Retrieved on 24/04/2004 from 
http://www.nelmh.org/page_view.asp?c=20&fc=005002001&did=2293 
Therrien, R., Mailhot, M. and Gagnon, A. (1998). Increasing patient adherence: 
Experience with the ?HIV medication guide?. International Conference AIDS, 12, 
595. 
Titscher, S., Meyer, M., Wodak, R. and Vetter, E. (2000). Methods of text & discourse 
analysis. London: Sage. 
Tjoa, A. (2005). Invest in research on traditional medicines. Equal Treatment, 15, 4. 
Tobias, B.Q. (2001). A descriptive study of the cultural mores and beliefs toward 
HIV/AIDS in Swaziland, Southern Africa. International Journal for the Advancement 
of Counselling, 23, 99 ? 113. 
Turner, B.J., Laine, C., Cosler, L. and Hauck, W.W. (2003). Relationshp of gender, 
depression, and health care delivery with antiretroviral adherence in HIV-infected 
drug users. Journal of General Internal Medicine, 18(4), 248 257. 
Umeh, D. (1997). Confronting the AIDS epidemic: Cross-Cultural perspectives on 
HIV/AIDS education. Trenton: Africa World Press. 
USAids (2005). Living with HIV/AIDS. Retrieved on 23/03/2005 from 
http://www.journaids.org/livingwithhivaids.php#stigma. 
Ware, N.C., Wyatt, M.A. and Tugenberg, T. (2005). Adherence, stereotyping and 
unequal HIV treatment for active users of illegal drugs. Social Science & Medicine, 
61(3), 565- 576. 
 91 
Weiser, S., Wolfe, W., Bangsberg, D., Thior, I.,  Gilbert, P.,  Makhema, J.,  Kebaabetswe, 
P.,  Dickenson, D., Mompati, K., Essex, M., and Marlink, R. (2003). Barriers to 
antiretroviral adherence for patients living with HIV infection and AIDS in Botswana.  
Journal of Acquired Immune Deficiency Syndromes, 34 (3), 281 ? 288. 
Welman, J.C. and Kruger, S.J. (2001). Research methodology (2nd Edition). Cape Town: 
Oxford University Press. 
Yun, L.W.H., Maravi, M., Kobayashi, J.S., Barton, P.L. and Davidson, A.J. (2005). 
Antidepressant treatment improves adherence to antiretroviral therapy among 
depressed HIV- infected patients. Journal of Acquired Immune Deficiency Syndromes, 
38(4), 432 ? 438. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 92 
APPENDIX ONE: PATIENT TRANSCRIPTS 
 
Patient 1 
Key: I ? Interviewer 
        R ? Respondent 
      ? - Pause  
 
(Please note that a translator was used, hence the dialogue in the second person.) 
 
I:  Hi. My name is Janice and I?m from Wits University and I?m trying to find out 
about how patients take their medication.  
R:  Okay. 
 
I:  How old are you? 
R:  28. 
 
I:  And, what do you do for a living? 
R:  (Patient mumbles.) I?m not working. 
 
I:  Please can you speak a little bit louder because otherwise your voice won?t be 
taped by this machine. 
R:  Okay. 
 
I:  How long are you taking the antiretroviral medication for? 
R:  From last year (2004). 
 
I:  And, what do you think about the medication? 
R:  Before he was using the medication, he used to have the stomach problems and 
the stomach is running. After an hour after taking the medicat ion.  
 
 93 
I:  Thank you but what I am trying to ask, is what does he think about the 
medication. Does it help? Is it good for him? 
R:  Okay, he thinks that the medication is helpful and must be used by other people. 
 
I:  Is that everything you said, because it seems that you were speaking for along 
time. 
R:  Yes. He was just not understanding, so I am trying to explain. 
 
I:  Tell me about your medication, like how many tablets he takes a day?  
R:  In the morning he takes two and in the afternoon he takes three. He takes 
medication two times a day. In the morning he takes two and in the afternoon he 
takes five. (Attempts to name the specific tablets are not successful.)  
 
I:  Does he ever forget to take his medication?  
R:  No. Never. 
 
I:  And, why does he think other people forget to take their medication? 
R:  The thing is that if someone is not responsible for his life, then they just forget to 
 take the medication.  
 
I:  What does he mean by ?If someone is not responsible for their life?? 
R:  He means that here they are taught that they must take the medication, on the time 
that they have structured and if you don?t do that, the sickness will go on. It is 
important to take the medication and if you don?t do that you are not responsible.  
 
I:  Ask him why do people forget their medication the most? 
R:  He doesn?t know.  
 
I:  Ask him what does he think can help people to take their medication properly. 
R:  There must be someone who will be responsible for that particular person, to help 
him or her with the medication.  
 94 
 
I:  Ask him if there?s anything else that he feels will be able to help the person?  
R:  There must be something like a media or radio that can help this particular person. 
Or he must have a watch so he can be able to set the time so that he will 
remember to take his medication.  
 
I:  Thank you very, very much for agreeing to answer these questions.   
 
 95 
Patient 2 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
I:  Your name is? 
R:  Abozondo.  
 
I:  And how old are you? 
R:  38 years.  
 
I:  And what do you do for a living? 
R:  Me?  
 
I:  Ja. 
R:  (Patient mumbles.)  
 
I:  I beg your pardon. 
R:  I am taking the tablets for HIV.  
 
I:  Okay. Sir, what do you do for a living? 
R:  For living?  
 
I:  Ja. 
R:  I am coming to the hospital now.  
 
I:  Do you work? 
R:  No.  
 
I:  So, you are unemployed? 
R:  Ja. Now, I go back to unemployed. It starts in January.  
 96 
 
I: How many tablets are you taking a day? 
R:  I take in the morning, two, the afternoon, three.  
 
I:  So, you?re taking five tablets a day. 
R:  Yes.  
 
I:  Do you ever forget to take your medication? 
R:  No. No, I don?t forget.  
 
I:  Why do you think you don?t forget? 
R:  Because, it?s my life.  
 
I:  Okay. Why do you think other people forget to take their medication? 
R:  The people maybe?.if the people are drunk. They drunk the beer, maybe they 
smoking, they smoking the dagga and then you forget to take the tablets. Because 
me, there?s no smoking and me don?t drink beer and some things like that. See, 
these tablets are good for life. You see me, I?m sick for now I think one year and 
then you start taking these tablets and my life is coming back. Until now is fit. All 
the people, they ask me ?You taking this tablets?? and then I tell them ?I go to 
KwaZulu Natal to take these tablets and that they good for life.? I think that 
maybe, if its not eating these tablets, my body is not good. So, now it?s the same 
if you eating the tea or porridge.  
 
I:  Tell me about the porridge. 
R:  You see now, the porridge, the pap.  
 
I:  What about the pap? 
R:  If you eating now, for these tablets, I know every ?.only 9 o? clock before you 
drink the tablets ???.you have something slice?..  
 
 97 
I:  What do you think about the antiretroviral medication? 
R:  The medication?  
 
I:  Yes. What do you think about it? 
R:  I think?so it is good.  
 
I:  And how do you remember to take your medicine? 
R:  Okay, see the nurse make the calendar.  
 
I:  Yes. 
R:  They tell me when to take the tablets. Then, we got the paper to make the calendar 
and it tell me when to come back. So, I know everyday. And then I know not to 
forget. You see you take the tablet on the calendar.   
 
I:  Do you mark it when you take the medication? 
R:  Yes.  
 
I:  How many times a day? 
R:  You mark it every day.  
 
I:  When you taking the medication? 
R:  Yes.  
 
I:  For what other reasons, do you think people don?t take their medication? 
R:  I think also that people are not taking the medicine. If maybe, I think it is good 
now, I am never going to take this medicine. Right now it?s okay. But me, I think 
until the doctor must take the results. Until, it?s okay now.   
 
I:  So, some people, think that everything is gone and that?s why they don?t take their 
medication?  
 98 
R:  Ja. They just look at their body and say it?s okay. I can?t take the medicine 
because their life is alright now. But the doctor never give you the results. The 
doctor must give the results again and then the doctor must check you okay. Now 
the life is okay now.  
 
I:  Why do you think that you take your medication properly but other people don?t t
  take their medication properly? 
R:  Because me, I am serious. Because me, I?m going in the wheel chair. Can?t go. 
And then you go, I think so, if you?ve got the good tablets, you can?t leave 
because we don?t like to die. Ja. So I speak to doctor. Doctor says, ?Okay, take 
these tablets. Tell me what is going on in your body with these tablets.? The sick 
in the stomach, maybe sick in head. You see, I know what I will win with these 
tablets. And then I was sick in the stomach too much in the stomach and then I 
say, okay, I am sick until the body is coming alright. For two months, you eating, 
you sitting on the hospital. After two months, you see I am okay. So, I know 
every month I must come to take the tablets.  
 
I:  Thank you very much for agreeing to do this interview.       
 
 99 
Patient 3 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
 
I:  First of all, thank you so much for agreeing to do this interview. The information 
that you are going to give me will really help me with my research. 
R:  Okay.  
 
I:  Please feel free to speak your mind. Your honesty will be appreciated.  
R:  Okay.  
 
I:  How old are you? 
R:  I am 32 years old.  
 
I:  And what is your occupation? 
R:  I am a counselor.  
 
I:  And before counselling, did you do anything else? 
R:  I was working as a domestic.  
 
I:  How long ago were you diagnosed? 
R:  I was diagnosed by 2002. It was late October.  
 
I:  How long have you been on antiretroviral medication?  
R:  I start taking antiretrovirals by 2003????by September? 
 
I:  Tell me, how did you come to take the medication? 
R:  First of all, I used to have a problem of abdomen. I was having abdomen pain. So, 
I used to go the clinics and I used to go to the hospitals but nothing would help 
 100 
me. They give me panados, pain killers, all those medications but my abdomen 
continued to be painful. Then, one day I go to JHB Gen. They say, maybe I got 
cancer, womb cancer. And then they take a test for cancer and they say I must 
come back, and I go there after one week. They say I don?t have cancer. They say 
I must back to find out what is it. I go back and they don?t give me anything. 
Then, after some few days, after the JHB Gen, I used to watch TV. At that time, I 
was working Monday, Wednesday, Friday as a domestic. And I was having a 
husband. So, I used to watch TV. I saw that show, the Felicia Show. Then, they 
were talking about HIV and AIDS. At that time, I don?t know nothing about HIV.  
 
I:  So, you didn?t know you were HIV+? 
R:  No.  
 
I:  What year was this, mam? 
R:  When they were talking???..2003? So, I was watching, you know, other 
people, they talk about they were having headaches, this headache, this and that. 
And there was another lady. She was talking about a womb problem. And then 
she end up at the clinic where she took an HIV test, they tell her she?s got HIV. 
And me too, I got the same problem as this lady. Then, I told my husband when 
she came back from work. I tell her about the show, about HIV AIDS. And then, 
she didn?t agree for me to go and take a blood. But no, I suffer a lot. Maybe I 
should go because I don?t know. I feel very sick. I go, cause I want to know. By 
that time, my daughter was ten. So, I took my daughter the following day. I go to 
the clinic. I took blood. They say I must come back after two weeks. I go back 
and they give me my test blood. They ask me how I am feeling. I tell them, ?No, 
fine.? They say, ?Okay.? Then they give me the results. They give me a letter to 
come here to see the doctors for HIV. I came to Helen Joseph  the following day. 
Then I attend this clinic from that time. Then I used to come here and then my 
husband start to be sick. He was having asthma. They admit him at Helen Joseph. 
They say maybe he?s got asthma but they are not sure. Maybe its TB. He slept 
here mainly about two weeks or three weeks. They give him lots of Bactrim and 
 101 
then he comes back. I am staying with him and my baby. He was sick, sick. And, 
after some time, he became better. He ignore to come back to the clinic. He go to 
work, after some time. Maybe late 2002, he start to be sick again, that same 
asthma again. Then he was admitted. Came back here at Helen Joseph and they 
admit him. He stay for one month. After one month, they discharge him. Then, he 
came back to the house. He stay for one week. Then after one week, I took her to 
his mother. Then, he stay there in Natal for 30 days, one month. After one month, 
he passed away?..24th June. June?.July?.August, my mother passed away 
from a blood disease. After July, August, I start to be sick. Because at that time I 
was working as a domestic. I earn small money. I can?t pay rent. My daughter 
goes to school. There?s no one to help me. I?ve got a brother. He?s useless. So, I 
was stressed. I start to be sick. I?ve got sores all over the body. And I came back 
to the hospital. Then, I used to come here to Helen Joseph and met another doctor. 
When I came, I met only one doctor. By that time they tell me, ?You are very, 
very sick. Don?t you think you must start taking ARVs??   
?ARVs, whats that?? ?It is the medication for HIV. You?ll be better.?  
 
I:  The doctors told you that? 
R:  Yes. Okay, I agree cos? I was sick and used to hear about those medications from 
the pharmacist but I didn?t see them. Then, same time, they make a letter for me 
and then they sent me to research. Then I went there the following day. They start 
me on ARVs. I start taking 3TC and (names another medication. So I took them 
from October, November, December, January, February, March, April. In April, 
they sent me to come and collect them here from the hospital because government 
bring them to the hospital. And, I start to take them from the hospital and up to 
now, I?m still fine. I don?t see any problem. But, it?s tough to take the medication 
but before you think ????sometimes you think of leaving to take them. To 
forget about taking them but we have to. That mind comes back; you are HIV. 
That you remember about HIV. You remember everything, then you go back and 
take them. I don?t, I don?t remember even one day that I didn?t take my tablets.  
 
 102 
I:  How do you think that the medication is working inside of you. How do you think 
it works?  
R:  It works because at that time,I was losing lots of weight. I was wearing size 28. 
By that time I was having lots of sores but now I?m fine.  
 
I:  So, you were having lots of sores and now you?re okay. That?s how you think it 
worked?  
R:  Ja. It is working. ARVs are working.  
 
I:  Tell me, how many tablets do you take in a day?    
R:  In a day?  
 
I:  Yes. Tell me about your schedule for the whole day? 
R:  Stockrin, 2, 1, 1, 10.  
 
I:  10. Tell me when do you take them? 
R:  In the morning, I am taking 3TC, D14 and then at night I am taking 3TC, D14 1, 1 
and then Stockrin, 3, Bactrim, 2 and vitamin B, 2, vitamin C, 1. And also I forgot, 
I?ve got TB. I developed TB. But next month it?s my last month. Six months is 
over. That means I am taking twelve tablets. (Repeats the medication schedule, 
including the TB medication.)  
 
I:  And, do you ever forget to take the medication? 
R:  No, I don?t think so. Because, I?m staying with my daughter. Before she go to 
school, she used to take that box of tablets- I put my tablets inside a box, a shoes 
box. I put al my tablets there and then I put under my table. I?ve got a small table 
for TV, for TV. Then I put my box there. In the morning, she wakes u. She took 
out that box and put it on the table and I don?t forget it.  
 
I:  That?s very good of her to help you like that.  
 103 
R:  By 8 o? clock I know, when it?s ?Generations?. Sometimes I?m watching news 
and when it?s finished I know it is time t o take the medication.  
 
I:  So, you think it?s quite helpful to associate it with something that you do. 
R:  Yes. Because sometimes you forgot to set cell phone. Sometimes, you don?t have 
cepp phone. So, sometimes you can use soapies or something else to remind 
yourself.  
 
I:  What happens on weekends, when there?s no ?Generations?? 
R:  On weekends, I use my daughter.  
 
I:  So, she will take it out? 
R:  Sometimes because she is used to waking up in the mornings.  
 
I:  Do you think the people around you affect how you think about the medication? 
R:  You know, other people, they can take medication but people, they like advices 
from other people.  
 
I:  Tell me about that. 
R:  Because, when you counsel someone, you tell him or her about medication, they 
you, ?You know, someone was telling me their big brother was taking this 
medication and now he?s dead.? And me, I? advising him that ?You don?t know 
how sick was that guy. You don?t know his CD4 count. You don?t know how 
long he?s been sick.? We can be HIV together but we can?t die together and we 
can?t face it like the same.  
 
I:  Now you say that people are negative like that. Before you became a cousellor, 
because now you re well educated- When you first started, did people?s talk like 
that worry you?  
 104 
R:  But at that time, people, they were not that much about ARV. They didn?t know 
nothing about ARV because ARVs started last year April and I was already on 
ARVs.  
 
I:  How do you think people around an HIV+ person affects whether the person takes 
their medication or not? 
R:  You know, I don?t know how to put this. May be you can explain it in another 
way.  
 
I:  Okay. Just say that it?s you who is on the medication, you have a lot of people 
around you. People you work, people at home, people at church, people in you 
social groups. O those people affect whether you take you medication or not? 
R:  Ja. Other people, they ignore you but others they support you. Like people who?s 
those, maybe you come from Lesotho, you can take your medication totally but 
when you go to Lesotho, they going to ignore you. It?s like when your eat 
something, you drop it there. When you use a spoon, they going to reject them. 
They need education. People need more education about HIV. People, they know 
nothing about HIV.  
 
I:  Are you trying to say that that when people go to their homeland, they might not 
take their medication?  
R:  Ja. We used to tell them, please disclose your status because when you are in 
JHB, it?s easy for you to take medication but when you go there to your family, 
your family doesn?t know nothing about your status, then, it?s going to be tough 
for you to take your medication and it?s true. People take their medication when 
they are here but when they go to their places like Natal or Lesotho, they don?t.  
 
I:  If you look at your lifestyle, what do you think about your life and your lifestyle 
makes you remember to take your medication?  
R:  I think I learn a lot of things about HIV. Even now, maybe I?m working this job, 
because I want to learn more about HIV and I think that HIV is gonna be curable.  
 105 
 
I:  So, do you think that the fact that you got this job has a big impact o the fact tat 
you?re taking the medication. 
R:  Yes.  
 
I:  Is there anything else in your lifestyle that you think helps you to take your 
medication?  
R:  May be, you know to read magazines, to read something. Sometimes I know, here 
at the hospital we?ve got pamphlets on HIV and AIDS but when you go to a 
private doctor, sometimes you get other things on HIV and AIDS. I used o take 
them and g and read them. I don?t ignore them like I don?t know nothing about 
HIV. I?m learning more about HIV, I think every day.  
 
I:  What do you think causes people to not take their medication?  
R:  People, they ??like- People, they say that this medication is too much for them.  
 
I:  What do you mean by too much? 
R:  Like, Stockrin. You take 3, then 3TC 1, D 14, 1, in fact D 14  is twice a day, 3TC 
is twice a day. Stockrin is 3, once and maybe Bactrim and vitamin B and vitamin 
C. Sometimes that person got TB. They feel those people that the medication is 
too much and they ignore to take the medication.  
 
I:  Do you think they get confused? 
R:  Ja.  
 
I:  What about it being too much, stops them? 
R:  People, they give up. People, they just give up.  
 
I:  Why do you think they do? 
 106 
R:  In the other side (the on clinical trial group) people, when you talk to them, they 
can agree here but when they go through the corner they just through those pills 
away and take other advices, you see.  
 
I:  Tell me more about why you think people just give up. 
R:  They think that HIV, this medication can?t work for HIV.  
 
I:  But you, know about the medication. Why is it that you feel that the medication is 
gonna work yet others feel that it?s not gonna work? What do you think affects 
that difference in thinking? 
R:  Because, sometimes, other people, they start medication when they are fit. And 
this medication doesn?t need a person who is sick. They are forced to take 
medication while they are sick and this medication has got side effects. Just 
imagine, this person is sick and then takes ARVs. Arvs got side effects. Where are 
those side effects? They?re going to be to him or her. So, when they think about 
that someone who died, they think maybe this tablets kill him/her.  
 
I:  You spoke about side effects. Tell me, do you think side effects affect whether 
someone takes their medication. 
R:  Ja, most of the people, you have to be fair with the patients. You have to explain 
to them about side effects. That this medication, when you start them, you going 
to have side effects, maybe something like head ache, rash, stomach cramps, 
dizziness and dreams. So, people, they are scared. You explain, you can?t have 
these things in one time. You can have headache once, but when it?s bad, it?s bad. 
When it?s bad, they must come back to the hospital. They will say, ?I will come 
back. I want to think about it.? So next time, when that same person is coming in 
a wheelchair, he is very, very sick. So, people, they don?t want to take medication 
because of side effects, or because someone died of ARVs. And ARVs, doesn?t 
kill people.  
 
I:  What does the hospital do to make sure that you take your medication properly? 
 107 
R:  Me? ????.. Because my viral load, my CD4 count was low when I started 
the medication and I was sick. My viral load, I didn?t know it but now it?s 
undetectable. That?s why I said, this medication is working. I was very, very ill. I 
was dying.  
 
I:  What do you think can be done to help people take their medication properly? 
R:  I think we have to go to schools, to make lots of adverts and famous people like, 
for example like, Mandela talking about his son. People were coming ad saying 
that Mandela was taking about his son. Black people must get tested.  
 
I:  That applies to HIV awareness in general. More specifically, about taking 
medication properly, what do you think we can do? 
R:  We have to make sure ???.. like sometimes, that person maybe she don?t 
understand you, you must make sure that you book her for another appointment to 
make her to come back and understand you about this medication.  
 
I:  How will you know that the person understand? 
R:  When the person is coming, you ask her some questions to see that she is 
thinking. Then you can see if this person is understanding, even if she is going to 
a doctor. Doctor can?t just write medication and give to her. She must ask her 
about medication and they used to do it here. When she doesn?t know nothing, 
they bring her back to the counselors.  To teach them about education.  
 
I:  Is there anything else that you think can be done to help people take their 
medication properly? 
R:  You know what, me I was like the other people that used to when they talk about 
medication, they ignore you. When they come here, they are crying, so, I used to 
disclose to them about my family. Then, most of them, they know me. I was 
attending this clinic.  
 
I:  So, you are suggesting personal examples, making it real to the person.  
 108 
R:  Yes, some people will tell you, ?I want to see a person who is taking the 
medication.? They don?t believe when you tell them.  
 
I:  Thank you very much for agreeing to this interview. The information you gave 
me as very valuable and I hope we can use this to help other people.  
 109 
Patient 4 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
I: Thank you so much for agreeing to do this interview. 
 First of all ? ?How old are you? 
R:  35. 
 
I:  How long have you been taking the anti retroviral medication? 
R:  A year. 
 
I:  One year? 
R:  Yes.  
 
I: What do you think about the medication? 
R:  I felt worse, until antiretrovirals was so helpful because I was very, very sick, and 
then I got the access to the antiretrovirals.  I resigned from my previous job.  I am 
an ex-cop, and after I resigned I was very, very sick and after I got the anti-
 retrovirals, I was well. I was able to work and I was able to do everything, and I 
applied for a job.  I am now a counsellor, so I feel very very good.  
 
I:  Excellent.  So did you resign from your work because of HIV?  
R:  Yes  
 
I:  When were you diagnosed?  How many years ago? 
R:  In 2000.  
 
I:  In 2000?  Did you manage to get onto the anti-retroviral programme? 
R:  Actually I took antiretroviral after I was diagnosed.  
 
 110 
I:  Okay 
R:  It was the wrong information that I got, because immediately I took my anti-
 retroviral without any advise. Without anything.  At the doctor, he gave me a 
prescription for the antiretroviral, and when I resigned I stopped taking my 
medication.  And I resigned in 2002.  
 
I:  Tell me about that:  What made you stop taking your medication? 
R:  Because I was working at the police.  I was working with public, PDP, public 
Drivers (unclear), so they were paying me money, and I have to pop out R1700.00 
every month out of my salary for the tablets.  I was taking Combivet, part of the 
antiretrovirals, and it was the wrong combination because I had to take Triple the 
medication and pay R1700 for that, so I was actually just distracted. So, I used 
that money and thought I could replace it with my money later.  And one day 
there was a monitor in the office, and they found out that I took money, and they 
opened a case against me.  Before I could go to disciplinary, and everything, I 
resigned, because I explained that I was HIV positive, and then I wanted to buy 
me the kitchen, so I took that money and thinking how I would replace it before 
they knew, but the found out.  So I resigned.  
 
I:  So the cost of the medication was an incredible barrier for you? 
R:  Yes?  
 
I:  And I would like you to give me an understanding of how you think the 
antiretroviral medication works. 
R:  Actually the antiretroviral are good.  If you take them, the first few weeks you get 
side effects.  You get sick, you get drowsy, you got headaches.  You?ve got back 
pain, all those everything, that painful feet everything, but after some weeks you 
will see the results. 
 
I:  How do you think it is working in your body and why?  How do you think it is 
working in your body? 
 111 
R:  Ok, I would like to say.  I was maybe 46kg, then I gained weight and I am eating 
a lot, and I can feel the difference, when I was sick, and with the antiretroviral.   
Now I can see the difference.  
 
I:  So how old are you again?  
R:  I am 35. 
 
I:  And do you think that the people you are surrounded by affect how you think 
About the medication? 
R:  Affect?  Ja they do.  
 
I:  Tell me how? 
R:  It?s a long story.  
 
I:  No, no it?s all right 
R:  Actually, ??????????? I was attending the institute before they 
moved here.  It was IC institute on the other side of the hospital.  
 
I:  What is IC control? 
R:  Infectious control.  So, when I was very sick I was diagnosed with pneumonia at 
first.  And it was terrible.  After that I had TB.  When I was still on TB I was still 
attending the clinic and there was no antiretroviral available.  I asked the doctors 
when are we going to get the antiretroviral, and they said they don?t know, and I 
was running, I was hopeless, and people were dying.  When I was admitted, 
people were dying in front of me because of HIV.  I felt I had to do something, so 
I wrote a letter to Thabo Mbeki.  
 
Then Thabo Mbeki sent my letter to the Health Minister, Tshabalala Msimang.  
They came to my house, and asked me why I wrote this letter.  I told them that I 
do not want to die, and I am about to die, so I need antiretrovirals.  So she has 
 112 
commissioned nothing.  So after 2 weeks, she announced that the antiretrovirals 
will be available on the 1st April.  
 
I:  That was last year. What about the other people around you like your family, have 
they impacted how you think about the medication?  
R:  My family and friends?  
 
I:  Yes. 
R:  Actually at my home, it?s a counselling place. Everybody that is infected and 
everybody comes to me, when they need help.  They saw something in me.  What 
are you doing?  What are you eating?  So I advise them that I am only taking my 
antiretrovirals.  
 
I:  But, what do they think of the antiretrovirals? 
R:  They felt that maybe the antiretrovirals will kill you.  They do not want to hear 
anything bad about it but I used them before.  
 
I:  So you knew. And the first time that you used them?  How did the people around 
you think about that? 
R:  They didn?t know, because I did not disclose it at the time.  
 
I:  Ok, so you have disclosed it now? 
R:  Yes, everybody knows.  
 
I:  And tell me about your medication.  What is you daily medication like? 
R:  It?s Stockrin.  
 
I:  How many times a day. 
R:  Once a day at night, and then it?s (tape unclear) 
 
I:  Tell me how.  
 113 
R:  You take Trestity and Veritan in the morning.  At night I take them 20.00.  I take 
at night and Stockrin, everyday ? morning and night.   
 
I:  So all your tablets are at night? 
R:  No, it is morning and night.  
 
I:  Morning and night? 
R:  Yes ? 8 to 8.  
 
I:  So you know which one?s to take.  How many do you take in the morning? 
R:  I am taking one Zeret in the morning.  At night Zeret 1 and Tretisy, and then 
Stockrin.  Stockrin you only take at night.  
 
I:  And do you ever forget to take them? 
R:  Never!  
 
I:  Have you ever forgotten? 
R:  Ja, once.  
 
I:  Tell me why you have forgotten. 
R:  Actually I use to set my alarm, and I use my cell phone as a time beeper.  So at 
that time I think I forgot to put my alarm, but I took them.  I still took them, 
because I am taking my medication at 8.00, I remember at about half past ten, but 
I took them.  
 
I:  Do you feel that a person?s lifestyle affects whether you take the medication or 
not? 
R:  Ja it does affect.  
 
I:  How do you think so? 
 114 
R:  Because when you don?t take it, before you take it.  Before you take it, you got 
sick, you think that people can see that you are very sick on this aids thing is a 
stigma itself.  And then after you have taken it people can see, this is the real 
person.  
 
I:  But do you think that maybe where someone lives, that maybe a hectic lifestyle, 
or what might not be - or you find that you found in police work and you have a 
very structured lifestyle.  Maybe that helps you to take it better? 
R:  Ja.  
 
I:  Do you think that other types of lifestyle might not? 
R:  It depends on individual.  But if you want to live you will take them.  
 
I:  What do you think causes people to forget their medication the most. 
R:  People won?t take the medication at first, you feel better maybe because they are 
not very sick at that times and sometimes they do forget. 
 
I:  So you think their symptoms have got better? 
R:  Ja  
 
I:  Now in the initial education that you get when getting the antiretrovirals, do they 
tell you that you will feel better and that you need to keep taking them? 
R:  Ja they do.   
 
I:  What do they tell you at the beginning? 
R:  They tell you that they forgot their medication.  Others they did not disclose. 
Disclosure is very, very important.  Because when you forget to take your tablet, 
at least if I knew you were HIV positive, I can still send you an sms ? Please take 
you tablet ? or if living in a household, they can still remind you ? Have you 
taken your medication.  Have you done this?  If you didn?t disclose, it?s a big 
problem.  
 115 
 
I:  And you spoke about the fact that some of the symptoms disappear.  Lets just go 
back to that for a little bit. Because here at the offset, where people ? the social 
workers - explains to you that when they take the medication, the symptoms are 
going to disappear but you still need to take your medication.  
R:  Ja  
 
I:  So why do think that in spite of the telling you, people still stop taking that, when 
their symptoms disappear? 
R:  Why do they have to take it?  
 
I:  But why do people stop taking it.  When know they feel better. Even though the 
Social Worker had said to them, you must not do this. 
R:  They think are normal now, they are healthy, it?s ok.  That?s why they stop it.  
 
I:  Tell me about things in your life, because you seem to be a very good example, 
because you?ve only forgot to take your medication once. 
R:  Ja.  
 
I:  So, to help other people out there, tell me all the things in your life that you think 
are making sure that you take your medication.  
R:  You have to remember every day.  You know about taking your antiretrovirals.  
At the time, when you are diagnosed with my HIV, before I took my medication, 
before I took my antiretrovirals.  It will take some 2 months or 3 weeks or some 
time ? to forget about my HIV.  I just forget about HIV positive, but to take your 
medication it reminds you that you are HIV ? everyday.  
 
I:  Do you think it?s important for someone to remember that they are HIV positive? 
R:  Ja ? they must know that they are HIV positive.  They need antiretrovirals, and 
they need to take medication.  
 
 116 
I:  So what motivates you? 
R:  I don?t know what?s motivating me, but ? as I said I?ve disclosed my status, 
everybody knew.  Even if I forget, somebody will ca ll me.  Hi, how are you 
Cindy.  I?m fine thanks.  How are the tablets? How are you coping? And the other 
one will say ? everyday ?they will ask, even if I forget, someone will remind me.  
Even if it doesn?t remind me direct, but they will ask me ? how are the tablets ? 
are they checking out ok, then you remember ? oh I have to take my tablets.  
 
I:  What advice do you have for people taking antiretrovirals ? to help them 
remember? 
R:  I just ? you know ? to be sure, that believe antiretrovirals are helping.  
 
I:  You seem like a very positive person. Are you positive by nature? 
R:  Yes, I am a positive by nature.  
 
I:  Because it seems that you are very motivated, and maybe that positive nature is 
what helps you. 
R:  I am like that.  
 
I:  Do you think there is anything else that maybe the Health Care System can do, to 
try and help people take their medication?  
R:  Ja, if they can make more   ????If they can use media, or TV or to educate 
people about HIV about the antiretrovirals.  
 
I:  Tell me more about tha t ? about the adverts. 
R:  How and what is HIV.  How can HIV infect you?  What are the antiretrovirals?  
Because every time one listens to the radio ? you hear different stories.  
 
I:  Tell me about that.  Those conflicting messages. 
R:  They tell you that ? I was very very sick, then I went and got multivitamin ? you 
see those things. So people, they don?t know if the retrovirals are working.   
 117 
Because they think it could be the multivitamins. Ja, because this person is talking 
about multivitamins.  
 
I:  So you think that the conflicting messages almost confuses people? 
R:  Yes. And that can just confuses everyone.  
 
I:  Tell me about the side effects that you experience, and how long they last. 
R:  Actually they last for about 2 weeks, but that doesn?t mean they comes everything 
in 2 weeks.  It can come today, tomorrow ? it jumps.  And there are different side 
effects.  It?s like headaches, stomach cramps and bad dreams.  Stockrin gives you 
bad dreams.  And tiredness ? sometimes.  
 
I:  And do they put you off.   
R:  No.  
 
I:  I am referring to the first time, because the second time you knew. 
R:  The first time they didn?t tell you.  Its not all severe side effects, but there are 
severe side effects. The patient has to come to the hospital, if you see a severe 
side effect.  
 
I:  I am very interested in that first time that you took it.  It must have been difficult 
to pay out R1700.   
R:  At first ? I didn?t know anything ? I knew there was this tablets for HIV, and I 
wanted them desperately.   
 
I:  How did yo u know about this?  The HIV tablets. 
R:  After some time I was consulting the doctor. At the doctor, I asked, what can I 
drink for the HIV? He told me that there is this Combifer.  Where can I get this 
combifer?  Can I get it from the chemist, can you prescribe it for me.  
 
I:  So you really did believe in the medication?  
 118 
R:  Ja.  But at first when I started taking the antiretrovirals ? like mad.  But I didn?t 
want that thing to stop.  
 
I:  Why? 
R:  Because HIV ?.. my boyfriend was very sick at that time.  I don?t want to be like 
him.  
 
I:  So it was the fear. 
R:  Yes it was the fear that I needed to do that.  
 
I:  Is he HIV positive? 
R:  He died long ago in 2001.  
 
I:  I like the idea about increasing public awareness through the media, the increase 
in the programs. Tell me more about that. 
R:  They need to give sex education in schools.   
 
I:  But specifically towards helping people to take their medication regularly.  Not so 
much about HIV prevention.  Getting the people to take their medication properly. 
R:  The antiretrovirals are new, about a year now, so people do not know, so they 
must advertise ? we?ve got this antiretrovirals now so people must know. They 
must tell people the institutes where the antiretrovirals are available, because 
people they still sit and they die, because they do not have access to the 
antiretrovirals.  
 
I:  Where do you think the best place is to start with advertisement? 
R:  Everywhere.  Posters and banners everywhere.  Newspapers.  
 
I:  Thank you so much for this interview.  It was very very usefull, to see somebody 
whose is so motivated. Keep on with your motivation.  You look extremely 
happy.  How are you feeling now? Any side effects? 
 119 
R:  No. It?s only that sickness. So it is very good that you see somebody who is 
motivated, because it gives us hope that we can actually motivate other people.  
 
I:  Yes. Thank you very, very much. 
 120 
Patient 5 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
 
I: Thank you very much for agreeing to do the interview with me. 
 How old are you? 
R:  35 years old.  
 
I:  You?re 35. How long have you been taking the medication for? 
R:  I am not taking the medication.  My child is taking the medication.  I am not on 
the antiretroviral drugs.  
 
I:  Your child is taking it.  How old is your child? 
R:  Six years old.   
 
I:  Is your child here? 
R:  No ? she is not here ? she is at home. 
 
I:  Ok. And what do you think about the medication? 
R:  Ok, for the first time when I starting her on the medication, I thought that if I took 
this medication then I would be there when she gets big so that she can live 
longer. But the medication is Alot of money so now only she is on the medication.  
 
I:  So you are not on any medication?   
R:  No. I was on it for seven months when I was first diagnosed but I did not know 
then that I must only start at a certain time. So, I stopped it.  
 
I:  How come? 
 121 
R:  Because my immune system is still strong. See, you only start taking it when you 
get sick at a later stage. But now, it is time for my daughter.  
 
I:  What do you think about the medication? 
R:  The medication?  
 
I:  Yes 
R:  Ok, what I am thinking to myself is this.  If I take this medication for my child 
then it will prolong its life and then thereafter maybe God will think about us and 
will give us the cure, that why I decided we must take the medication.  
 
I:  And how many tablets is your child taking? 
R:  She is not taking the tablets, she is taking the solution.  
 
I:  Ok. Tell me about it. 
R:  So in the morning she is taking 19 ml and then 11ml and then it is 25ml.  
 
I:  And that is every morning?  
R:  Yes.  
 
I:  And in the evening? 
R:  In the evening, I am giving her??????..19 ml, and ???.2.5 ml.  
 
I:  Do you ever forget to give her medication? 
R:  Before ???????.I used to forget, but I now I give it on time, but I give it 
each and every day in the morning but it was too early.  I was giving for her 6.30 
in the morning, then sometimes I forgot, when I got busy, then only I give it to her 
at 8.30.  
 
I:  What makes you used to forget? 
 122 
R:  When I wake up in the morning before six, she is not up.  And then I get busy 
working, and doing the washing and then I forget, and then I remember I didn?t 
give her the medication then I go back and give her medication.  
 
I:  And how did you come to some sort of way to give her the medication at the same 
time? 
R:  Ok.  About this medication.  At the first time when I started given her the 
medication, I will give her lots of pap so she can be strong and also feed her in the 
morning giving lots of vegetables and lots of fruit so she can be strong without the 
medication then ??????boost the immune system.  
 
I:  What do you think make you forget to give the medication the most? 
R:  The most? 
 
I:  Yes. 
R:  Before I never give her the medication before, but what makes me forgot 
sometimes, is that I wake up early in the morning, then sometimes I going early in 
the morning.  Then I take her and leave her with my sister. Then sometimes I 
forgot, and then I phone her and ask her ? did you give my child her medication?  
Then she remembers to give the medication.  
 
I:  So, it had to do with just not being used to giving her the medication? 
R:  Yes.  
 
I:  Do you think there is anything that can help you to help her take the medication 
properly? 
R:  Yes  
 
I:  What can help you? 
R:  If I do, I give her the medication ok, it will help me, so she can live longer and 
then afterwards her body will be ok.  
 123 
 
I:  Is there anything that you think will help you to make sure that you give her the 
medication?  
R:  Ja, because I used to on my cell phone, so it must cry on 6.00, then I knew at 6.00 
I wake her up then I give her the medication at 6.30.  
 
I:  You use your cell phone to remind you. 
R:  Yes.  Before I didn?t. Then, they gave me a time table to remind me, so that I can 
give her the medication.  
 
I:  And does that help? 
R:  Yes  
 
I:  Where did they give you the timetable? 
R:  They gave me at the hospital.  
 
I:  Is there anything else you want to tell me about?   Do you think that other HIV 
positive people, maybe battle to take their medication on time. 
R:  Ja. Some of them they don?t take the medication at home, but some of them they 
decided to take the medication now. They talked about it now. They?re  going to 
drink it each and every day. They going to take the medication for maybe 2 ? 3 
months, and after 3 months they think, there is no pain in my body, I?m ok, I?m 
fine, then they decided they are not taking the medication, and then by the time 
and when the pains come, then it is worse, then they remember to take the 
medication.  They have never been committed to the medication before, so they 
have decided they are only taking the medication now.  
 
I:  Do you have any advice that you can give to anybody? 
R:  Ja.  I have lots, because I am a comforter and also a HIV person, so I have that 
and also I am proud of myself because I have experience of it, because my child is 
taking the medication, so I give them lots of advice about it.  And then I also tell 
 124 
them about the side effects of taking the medication, because I?m worried about 
my child and they have a responsibility to their child.  
 
I:  And do you have any suggestions that you have to help parents on giving the 
children the medication on time? 
R:  On time. I?ll tell them as a comforter in the morning, I tell them everyday, I tell 
them about the risk of not giving their medication on time.  I tell them what is all 
about the medication, and why the medication is important for them.  So when I 
tell them I explain a lot of things, everyday, like yesterday I had a patient of mine.  
I explain to him, he must take the medication right on time and prolong their life 
and if he is not taking his medication right on time and he might sometimes 
forgot, because he forgot for almost after 6 hours.  You can forget for an hour or 
30 mins, but not for 6 hours.  You cannot forget it for so long.  That is what I am 
telling them. 
 
I:  Thank you so much for this interview  
R: Ok. 
 
I:  And good luck to you and your daughter. 
R:  Thank you.  
 
I:  Goodbye 
 
 
 125 
Patient 6 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
I:  Hi. Thank you so much for agreeing to this interview. 
R:  Actually at the moment, they took me off the study, so they are no more giving 
me medication, because I was been in prison.  I was supposed to be there till 
August, and then I ask how can I get my medication.  How do I get to see them, 
the doctors and all that there?  They said no, they will come back to me, and then 
they phoned me back to tell me and they said that they tell me no, I am taken off 
the medication.  
 
I:  Ok let?s start from the beginning. How long have you been taking the 
antiretroviral medication? 
R:  Since 1999 November.  
 
I:  And how long were you diagnosed with HIV?  
R:  Since 1994. It has been about 6 years.  
 
I:  And have you been on clinical trials? 
R:  Yes, clinical trials.  
 
I:  What do you think about the medication so far? 
R:  I felt good and nobody actually noticed that this was wrong with me, even like 
now my heart is very sore, because they took me off, because I preferred the study 
medication, because when I see people who takes from the normal clinics, but 
then you can see its like ok, nobody can say that they have AIDS or, but us that 
knows, that knows who are HIV positive. Yes, they have this rash, they have all 
these things, and its with this study medication, there was no really bad side 
effects on my side.  
 126 
 
I:  So you?ve quite been lucky with major side effects? 
R:  Yes. I do not know how this is side effects or what. (Patient points to her neck.)  
 
I:  What is? 
R:  My glands are all swollen, and it is putting pressure on my brain.  I do not know 
now, because I have to get an biopsy done at the JHB hospital, and I need to go to 
a private doctor, so I went to a local clinic, and they sent me to hospital and the 
hospital send me for a biopsy, because the Dr needs to check if it is TB, or 
something else. He mentioned 3 things.  
 
I:  How long have you been off the medication? 
R:  Since round about 19th January this year. 
 
I:  The reason that they took you off was because you were in prison.  
R:  In prison, ja.  
 
I:  And you were supposed to be in till September this year. 
R:  No, August, and they said that with my CD count at 1282 I can still go on without 
medication, till I come out and when I can come out, I can come and see them. 
But my family actually thought that they did want me on medication there, 
especially knowing that I am sick and Christmas Eve, I had this terrible pain in 
my heart and all that and I was in hospital there in prison for 4 days, and so my 
family made an appeal for me to come out, so that I can get medication.  
 
I:  So now you are out, because you need to get treatment? 
R:  Treatment, yes.  
 
I:  So what happens now if you don?t get the medication, do you have to go back in?  
R:  No.  
 
 127 
I:  Do you think that the people around you affected what you thought about the 
medication, like the other people in prison?  
R:  No.  
 
I:  But people around you like your family? 
R:  They don?t know. No, they don?t know.  Only my sister and my dad knows.  I told 
them form beginning.  And my sisters, and my girlfriend.  She is an AIDS co-
 ordinator, but my children does not know.  
 
I:  How old are they? 
R:  The eldest is 27 and the other is 22, and my baby is 18.  
 
I:  How old are you mam? 
R:  I am 45.  I will be 46 this year.  
 
I:  Do you think the people around you affect how you think about the medication? 
R:  Ja, they are affected.  
 
I:  No, do they affect how you think about the medication? 
R:  Like my brother.  
 
I:  Yes. 
R:  No, I don?t really understand the question.  
 
I:  What I am trying to ask is, you know how the people think about the medication, 
about how it will help you.  If people around you, says something in particular 
about AIDS antiretroviral medication doesn?t work, that make you think about the 
mediation in a certain way? 
R:  Oh. No, actually my sister that was at one stage, doesn?t want us to have it.  My 
sister used to say that our Government is very clever.  He must first find out what 
the after effects of the medication, he wants to do proper research.  Because the 
 128 
Americans just wants to dump things on us and he first want to find out what 
other long term after side effects and so on, and she thought it was right of him to 
take time, and to research on it and all that.  
 
I:  So, he was worried about side effects? 
R:  Yes.  
  
I:  When you were taking medication, how many tablets were you taking a day?  
R:  A day.  That?s morning and evening.  In the morning I used to take 2 capsules.  I 
used to take 4 in the morning and at night I used to take 2.  
 
I:  It is six all together. Did you have any side effects or anything. 
R:  No, in the beginning, I was on a different tablet, and I had to drink it on an empty 
stomach, it was a round tablet that you put in, and it fuzzes, like ENO.  I had to 
drink that, so after some time, it was in 1999, then since then I had stomach 
problems, then it was bad.  
 
In April 2000, I had to have an emergency operation, I had to go for a 
hysterectomy, but my appointment was for the Monday for the hysterectomy, then 
the Saturday night I just got sick at home.  I went to the loo, and came back and I 
could not get off the toilet seat, I could not wipe myself, nothing.  I called, and my 
husband tried to pick me up and he touched me, when I was still married, when he 
touched me.  I was in pain, so I crawled to the bed.  We called the ambulance, and 
took me to the clinic.  They could not take me to the Kenridge, where I had my 
appointment for the hysterectomy.  And then the Sunday they took me to the 
Kenridge.  Only to find then that they need to do an emergency op on me.  My 
bowel separated.  And that was Prof Rice that did the op, and he could not 
understand, why / how come a person can get a separated bowel, so I let the 
people know.  The Dr who was in charge of me that time.  The Dr was, she was 
my doctor, Dr Yanks. And then I let them know, and she said I must not take any 
medication for that time, so I did not take medication.  Only after Dr Rice found 
 129 
out I was infected with HIV.  I did not tell him that, and he said it was no wonder 
he was struggling with my blood pressure and things like that, to get my blood 
pressure down to normal.  
 
I:  So the medication did affect you? 
R:  Ja, I went back to the clinic, when they took me off and never put me back, ever 
since I have not been back.  I have a thyroid problem as well; I got very thin, 
before I knew I had a thyroid problem.  Eventually I was treated, and then the Dr 
did tell me I am going to get fat, and now I am actually very fat, and none of my 
clothes actually fit me. Now this morning when I put this on, I saw no it was 
slipping in nicely.  So it means I lost weight since last week or so.  
 
I:  So, the medication has affected whether you pick up weight or not? 
R:  Yes, the Altroxin , not actually the thyroid.  But even this medication, we got this 
thing that tells you what are the consequences, and inside and outside effects. It 
says you will get fat like in your neck, or you will get a big stomach, only thing is, 
I see my stomach is quite big.  
 
I:  When you were on the medication, did you ever forget to take the medication? 
R:  Ja, that maybe at night, maybe after visiting and normally I take my medication 
8.00 or 9.00 and remember and 10 or 11 or so, but at a later stage, my sister says 
put tablets in the car, so where I went, I drink them, but there were times where I 
forgot.  
 
I:  And do you skip in the morning or the evening?  
R:  In the evening most of the time, especially weekends, because Sunday?s we spend 
with the families.  
 
I:  And, why do you think you used to forget? 
R:  I did not have it with me.  
 
 130 
I:  So you never used to take it with you? 
R: I told my sisters, to start carrying it.  
 
I:  And you got better? 
R:  Ja.  
 
I:  In the mornings, do you ever forget? 
R:  No, weekends ja, maybe Sunday mornings.  During the week when I was 
working, I was taking I every day the same time but weekends and I never used to 
take it at the same time as during the week, because I used to sleep till late.  Now 
I am up, its time to go to church, I bath, I don?t eat.  I run to church and when I 
come back, I eat and I take my tablets.  
 
I:  And in terms of taking the medication, to do it as part of a routine seems to be 
better? 
R:  Ja that is very important.  You have to have that set time for the medication.  
 
I:  Do you feel your lifestyle affects whether you remember to take your medication 
or not? 
R:  Ja, because it works on my nerves, because I skipped, hey I did not take my 
medication.  It is this time already, and you are like in a panic state and eventually 
ag I take it when I get home.  You say ? ag I forgot about it, when you reach 
home, you just want to get to bed; you completely forget to take it.  Or you think 
for yourself, is it still going to work, because it is now 2 ? 3 hours after the time 
that I normally take it.  
 
I:  What do you think used to cause you to forget to take your medication the most? 
R:  That?s a good question.  I can?t really say.  
 
I:  Tell me all the things that you think used to cause it.  Anything. 
R:  Like maybe even when I have visitors at home.  
 131 
 
I:  Why would you not want to take it in front of them? 
R:  Because I have to eat first, and then take it.  I always believed I have to have 
something in my stomach before you take it.  When I had visitors at home, I used 
to take it later than the normal time. 
 
I:  Did you ever think that maybe that your visitors would see your tablets.  Do you 
show them your tablets? 
R:  No. I usually kept in on my fridge, and on the fridge next to it, is my sugar bowl, 
so that why I kept it on there so whether I take my tea or coffee the sugar is there, 
I touched those tablets. I used to have a small Tupperware holder where I used to 
put it.  At night when I take out the nights tablet, and I took out the morning?s 
tablet as well and I put it in there.  
 
I:  Did the hospital help you to take your medication properly? 
R:  Ja, like in September I was hospitalised with my knee, some sort of arthritis in the 
knee, and they were quite nice, and I was in a ward where I was not supposed to 
be, and those sisters loved me. They enjoyed me being there, and they were quite 
nice, knowing that I was HIV.  I did not expect that from them, because it is heart 
patients in that ward only.  This is JHB general, and they always used to remind 
me about the medication.  Don?t forget to tell your visitors or whoever is coming 
to bring your medication with, because I went for my normal thyroid check up 
and they saw that, and the doctor thought, no, I had to be admitted, and I did not 
have my medication with me.  
 
I:  Do you have any advice for people who are taking medication, because it seems 
to know the importance of taking it on time.  Do you have any advice or any 
suggestions to improve when people take their medication? 
R:  One should always carry you know, extra tablets with you, when you are going 
for a day?s visit.  Take today and tomorrow?s tablets with you because you never 
know when you have to stay over, because this happened to me many a times.  I 
 132 
used to go to my sister, and where I park, I live in a flat, so I park at my auntie?s 
house and walk to my place and then many a times she used to say, sleep over, 
she says, sleep, as it is quite a distance for me to walk, then I used to sleep and 
never used to have my tablets or just tell her I have to go, I don?t have my tablets, 
things like that.  That is why I think you should always carry your tablets with 
you, and always try and have it more or less the same time with a couple of 
minutes difference, and I always make sure not have it on an empty stomach, 
don?t have it on an empty stomach.  
 
I:  Is there anything else you would like to tell me about what you think could be 
affecting the way people take their medication?  
R:  What I think, not actually the way they take their medication I think some people 
think, no I am on medication and maybe I am fortunate to really have a partner 
right now who support me about the medication.  I divorced my husband, but we 
still used to be like boyfriend and girlfriend, that?s since 2003.  Now I think why 
some people while taking the medication they are still careless on themselves.  
They don?t really look after themselves.  I think good eating also helps a lot.  
 
I:  What do you think cause people to be careless, and others not to be careless? 
R:  In the beginning, I don?t know if it is because I am a Christian but I was very hurt, 
when I found out that I was like that.  And you know that thought comes to mind, 
I am also going to give the next person this, and fortunately me being a Christian, 
I thought no, normally say God forgive them because they know not what they do 
or what they say, and that went away.  But then I also found out that if you are 
HIV positive, it doesn?t mean ok ? you can use a condom, it doesn?t mean you 
can be like a normal sexual person, having sex like a normal person.  Like me that 
was married was trying to have it like twice a week when you are used to have it 
like everyday.  Try to minimize it, when you are HIV positive, whether you use a 
condom or not, because I believe the sex does something. May be it?s friction but 
it also contributes to you getting more sick and things like that.  
 
 133 
I:  If you have to think more about people taking their medication on time, do you 
have any more suggestions you want to give?  Or anything you think it affects the 
way people take their medication? 
R:  Can also be if you did not tell people.  Like me.  I only told my immediate family, 
but my children don?t know, because they was schooling and I didn?t want to tell 
them, and now my eldest son and daughter they are overseas, so also now my 
sister says, I can not tell them over the phone.  So I said, what if something 
happens to me and they need to be here you know, but then she said, I don?t 
know, we need to work out something.  I need to go there and tell them or so.  
What was the question again?  
 
I:  If you have any suggestions, but like you said, disclosure is very important. 
R:  Disclosure, its very important, because if you know I am HIV and we are friends, 
and you come and visit me, and it is time we have to go somewhere, you?ll tell me 
not to forget my tablets, so if you don?t know, you wont tell me tha t.  
 
I:  So you think the support system is important. 
R:  Yes it is very important.  
 
I:  Anything else your want to tell me, any problems you see with the whole aspect 
of adherence to the medication?  
R:  Another thing is, you can have the proper medication, but if you don?t have 
proper food, like I am a single parent, and I used to have the medication here, but 
at times I would feel that I am weak, and not really sick but I still feel, and the 
minute I eat a piece of pumpkin, or I go somewhere, visit someone.  I used to 
actually crave, I am wishing for food but veggies, and then I used to have you 
know things like that ? hey, go to my sister - did you cook, and she will say 
chicken, and I used to get angry, and she said no I made veggies, after eating that, 
I used to feel the difference in my body, I don?t know if it is psychologically or 
what, I used to feel, I feel how I feel strong, feel have something in my system, 
something of that sort.  
 134 
 
I: Thank you so much for this interview 
R: You are welcome 
 
 
 135 
Patient 7 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
 
I:  The first thing, I want to ask you, is how old are you? 
R:  I am 29 years old.  
 
I:  29 years. And what do you do for a living? 
R:  For a living?  
 
I:  Yes. 
R:  I am a teacher.   
 
I:  And how long have you been taking antiretroviral medication? 
R:  Ok, I started last year in August.  
 
I:  Last year in August. And how has it been going for you?  
R:  Very well. Because I was seriously ill by the time I started with the antiretroviral 
treatment, so after taking it I recovered my life up until now, and I am gaining 
weight and all of these things.  I am quite well.  Even in the bone I can feel that I 
am now good.  
 
I:  So you are definitely feeling a difference? 
R: Yes.  
 
I:  And you are feeling that you are getting better? 
R:  Yes, I am getting better all the time, because even my weight is going up, I can 
see.  I am gaining weight all the time.  
 
 136 
I:  And what do you think about the antiretroviral medication? 
R:  I think everyone who is HIV positive must take these tablets because they are 
good. They have a strong effect in the body, more especially for a person 
suffering from HIV, and like to treat other diseases.  Actually you have to go for a 
test and get to see if you can have all those things, and then begin the medication. 
The antiretroviral treatment.  
 
I:  So you seem quite motivated about taking medication and things.  What do you 
think caused that for you? 
R:  For taking medication?  
 
I:  For causing you to be interested in taking the medication. 
R:  It is because of taking this antiretroviral treatment.  Because if I neglect it or 
desert from it I could have died, but because of taking it, I am feeling very very 
well, so I encourage everyone who is HIV positive to take this treatment, because 
this is the most important in South Africa, the world as such.  So it is very 
important to take it.  
 
I:  Tell me about your medication.  How many tablets do you take in a day? 
R:  Okay, a day.  In the morning I take two tablets and in the eve ning I take 3 tablets.  
Trestisy as well as S??.., and in the evening I take Trestisy,???.. and 
Stockrin.  So 5 a day, you can say.  
 
I:  So you are taking 5 tablets a day?  Do you ever forget to take it? 
R:  No I don?t forget to take my tablets.  To me it  seems like meals, and there?s no 
one who can live without food, so they seem like food and when I take it, it is like 
the tea in the morning it is like breakfast and at night it is like supper.  So I am 
used to this treatment.  
 
I:  Have you ever forgotten to take it? 
 137 
R:  No, I?ve never ever forgot to take it, because if I forget to take the treatment, it is 
where I release the virus so if I take, so I have to take it to keep it under 
suppression.  
 
I:  Will you please tell me how you remember to take your medication? 
R: Yes.  
 
I:  You said that you are using it with your food so that you remember to take it. 
R:  Yes.  
 
I:  Do feel that your lifestyle, how you live, the type of person you are, do you think 
that affects how you take your medication. 
R: No, it doesn?t affect me to take medication, and as I said before, that medication 
to me seem like food, in the morning and in the evening.  No, so I don?t feel like I 
am taking medication, and I seem like everyone in the community or in the world, 
so I don?t have a problem taking medication.  Certainly, that I know myself, that I 
am taking this type of medication.  
 
I:  Okay. Do you think, that you know the people you live with, or even your family 
or friends, do you think they affect how you take the medication? 
R:  No, my friends and family are positive, so they help me.  More especially when I 
started on the medication, there were problems or difficulties that I came across, 
so in that time I need someone to assist me in taking the medication, especially 
the one which I took in the evening, as having a strong affect on the body, when 
you starting to take it especially after a month, so there are no side effects.  But 
there is side effects when you take the medication the first time.  You feel like 
you are drunk, dizzy and bad dreams, all those stuff, so I need a person to be with 
me so that I can continue to take this medication. But it happens, when I started 
with the treatment, when you gone and after about 2 months all those things 
disappeared, it seemed like any tablets you take.  
 
 138 
I:  So the people around you, are they also HIV positive? 
R:  I don?t know, but there are people who are HIV positive that I know, and we are 
sharing treatment, but you come to the clinic together to get the treatment.  
 
I:  And does it help you, that you also know somebody else who is taking it also? 
R:  No.  
 
I:  No, no, I said, is it a good thing that you know other people who are also taking 
medication?  
R:  Yes, yes, we know each other.  My friend is also taking treatment, he knows me 
that I am taking treatment, so they have no problem about that.  We also used to 
remind one another about that.  Hey, did you take your medication in the 
morning. Yes I did, oh I forgot, let me rush and take it, something like that.  We 
share ideas about the treatment.   Mostly during the first time of taking it, because 
there are side effects.  So some of the people when they start with the treatment 
and coming across with the side effects, they just leave the treatment and stop the 
treatment, because of this side effects, so what we must do is carry on using it 
although there is side effects.  
 
I:  If you have to think about people who don?t take the medication.  What do you 
think causes them forget to take their medication the most?  
R:  The treatment?  
 
I:  The antiretrovirals.  Why do you think people forget to take the medication? 
R:  Some of them forget.  I do not know what is the problem, because I do not forget.  
Maybe it is they counsellation and to be told to take treatment every day at a 
specific time.  It is very, very important.  I think why people are denying the 
treatment, actually I cannot say they forget, they are denying the treatment, 
especially the evening treatment, with the Stockrin, it is because of the side 
effects.  Because of the bad dreams at night, maybe they are afraid, because you 
dream something that you have never seen in your life.they have never dreamt 
 139 
before.  But they should carry on taking it, although the side effects and those bad 
dreams, because after time, they dream normally.  It wont? happen anymore.  
 
I:  Why do you think you were able to take your medication, even though you have 
side effects, where other people don?t take it? 
R:  It is because I know, actually when my doctor gave me the treatment, he told me  
everything about the treatment and also emphasized to me, that now is your 
second chance, and if this treatment was not invented, or if this treatment was not 
given to patients, they died.  So I know if I denied this treatment or forget this 
treatment, I know where it will end, I will die, definitely, so that is why I take the 
treatment every time and every day.  I do not forget.  Because if you forget, as a 
result I can be in the bad in the hospital.  It is hard.  I was admitted for about a 
month, so I think about all these things so that is why I am always taking my 
treatment.  
 
I:  Do you think there is anything that can be done to help people take their 
medication better? 
R:  Ok.  Something like not to forget the treatment.  
 
I:  Yes. 
R:  I think people need to do counsellation more especially.  And their families, they 
need a workshop or. something like that, and to take care of the patient or the 
person who is affected to see that the taking the tablets accordingly.  You can 
even have a calendar to jus t to tick ? have your taken the morning treatment / dose 
or evening dose.  You should tick and see when you forgot to take the medication, 
so you must have a calendar and a person to assist him or her, anytime, a sister, 
wife, husband.  
 
I:  And what about those people who do not have anyone they live with? 
R:  It is quite difficulty, what to do with a person are living without parents, without a 
wife or anything or somebody else.  It is quite difficult.  Even the people in the 
 140 
hospital are those people who are sick.  Being at home is quite difficult, but it is 
up to you.  Its your life and it is not someone else?s life it is your life to know you 
must take treatment even if there is difficulties around, you must take treatment, 
but you must visit the clinic at least once a week, so you always have people 
around you.  
 
I:  What does this hospital do, to help you take your medication?  
R:  The hospital.  They helped me a lot, from the day I started the treatment, because, 
they give me tablets for a month, but if you start with the treatment you get tablets 
for about 2 weeks, and then you come back. So I am taking the tablets for a 
month, and then after each month, I used to come back here.  They helped me a 
lot.  They motivate me, and they weigh me and all of those things and I have to 
know about the weight, am I gaining or am I losing the weight.  So they keep on 
motivating me, even the doctor.  Always ask me wherever, the doctors who 
knows me ? are you still continuing your treatment ? yes.  So that give me a 
motivation to my life.  Even if I am suffering from a headache, they give me 
tablets, because they understand me.  They know me very very well, that is what I 
can say.  
 
I:  Do you have any advice to help other people take their medication?  
R:  Yes, I do.  They must take this treatment, because this treatment is most 
important.  And you can survive through this treatment for almost 15 years.  You 
can survive even 15 years, if you take this treatment.  It is very, very important.  
Like I said before, I was taking it for a month, months ago so after taking the 
treatment I wake up and I can run about 20 km after taking this medication.  It is 
very, very important to take the medication.  They mustn?t deny it; they must take 
the treatment accordingly.  
 
I:  Do you have any advice that could help somebody to take the medication? 
R:  Yes, if you are suffering from this HIV you must take this treatment.  It is very, 
very important, and get this treatment.  You must go for test, and get the 
 141 
counselling and begin with the treatment.  This treatment is the same as any other 
treatment, for flu or something else, and it helps you a lot.  And a person who is 
suffering from HIV denying or have no treatment like this, and he / she died, but 
if you have taken the treatment you carry on with life, you can buy your car, buy 
your house, and all other things and continue with work and get money.  This 
treatment, you can carry on like anybody else who is HIV negative, there is no 
difference.  The only difference is HIV positive.  But after having this treatment 
you carry on with life doing anything you wish to do, but you must abstain from 
sex.  Okay those who are married, you can do sex, but use a condom.  That is 
what I can say.  
 
I:  Thank you very very much for this interview 
 
 142 
APPENDIX TWO: EXPERT TRANSCRIPTS 
 
Expert 1 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
I:  The first thing I would like you to do is to basically tell me what kind of work it is 
you do.  
R:  I am a co-ordinator and a counsellor.  When patients come in they get counselling.  
 
I:  And you yourself, are you a counsellor by profession? 
R:  Yes I am.  
 
I:  Can you tell me a little bit about your qualifications? 
R:  My qualifications, unfortunately, the time I was supposed to do my standard 10, 
that was the time of the unrest, 1976 so I was a teenager by then and I saw it as a 
chance to skip school, and I got married. But after a while I realized, that really; I 
need to do more.  I joined the field of marketing, and I was doing well, and I was 
working for a very big marketing company, driving all different types of cars, and 
enjoying myself. Until such time something happened in my family, that?s what?s 
drawn me to the HIV field. Then, I started basic information on HIV and then 
counselling, as you know afterwards. The organization I belong to took me for 
adherence training.  
 
I:  Whom did you attend the adherence training through? 
R:  By the Community AIDS response. I think we were the first group to get trained.  
Dr Venter, Dr Conradie, those are the people who trained us.  
 
I:  So how long have you been working in the HIV AIDs field for? 
R:  Since 2001.  
 143 
 
I:  And specifically with adherence? 
R:  Adherence started ??.  The roll out started in 1994.  We started in December 
2003.  
 
I:  You know antiretroviral medication, has only recently been introduced to the 
public sector.  If you consider the individual who is taking the medication, do you 
think there are any individual traits or behaviours that acts as barriers to 
adherence? 
R:  Yes, that is what I realized really.  Because some of the patients, since 2001, I 
find them in here attending their clinics regularly, but as soon as they started with 
ARV?s, some of them are doing well, and some of them have some issues that 
were not there before, and are now coming out and they are making the adherence 
a problem.  Firstly, some of them will discover they haven?t disclosed, which is 
the main issue, so with the antiretroviral therapy it is worse than with the 
antibiotics and the vitamins. Some of the people now are becoming more 
educated, and they know what the ARV?s are and what they are for. So, it is 
making them not really adhere to the treatment, and it is drawing them back to 
stage where we started when they were diagnosed, you know, depression, stress 
etc. 
 
I:  So you are trying to say that because they know that it is ARV?s and not 
antibiotics, that causes them not to adhere? 
 
R:  Yes, They are hiding the treatment, and again this thing of time, if you are hiding 
some, definitely you are going to forge t.  The chances are ? you wont forget, but 
wont get a chance to take the treatment, because there will be questions asked. 
 
I:  Do you think there is any specific types of people e.g. by race, by wealth that you 
have seen experienced that are good or bad at adherence? 
R:  You know what I have realised now, I never thought that men would adhere.  
 144 
 
I:  Why did you not think that? 
R:  You know men at most times they take things lightly. Men, the ones who are not 
trusted are the ones that are now serious in tak ing the treatment, even though you 
look at him and see that this one is a heavy drinker, but he still tries, and they still 
take their treatment.  And coming to a relationship issue, that?s the one who gets 
the woman to fail to take the treatment correctly, because woman mostly depends 
on their husbands, so their lives depends on their husbands.  So, they are scared to 
disclose to the partners, or even if they disclosed, they are scared to tell the 
partners that they are now taking ARVs. That?s the case but when the partners are 
also on ARV?s the woman is the one who is helping the partner.  
 
So I think this thing goes back to culture. Zulu, Sotho, all of us blacks, some of us 
are similar, there?s this thing that when a woman discloses something serious to 
the man, the man will put the blame back to the woman, who brought shame to 
his family, so they are scared to tell them.  
 
I:  To take their antiretroviral medication? 
R:  Yes. But they are willing to take the antiretroviral drug, just to make a small 
example.  You know why I am here today when it is my day off?  One of my 
patients is from KZN and she is supposed to come and get treatment on the 20th, 
which is on Monday and requested that she does not have money and is scared to 
ask the husband for money, because they ask questions. But the husband knows 
she is HIV positive, but the husband does not want her to take the antiretrovirals. 
He throws it away. Last month again he came to fetch it.  He collected the 
medication, and we put it in a cooler box, to make it look like a gift, one of her 
family members left here, and that?s how I help her to get the treatment.  We 
packed it so nicely like a present, so this month she wants us to do the same thing 
again, but unfortunately it is her day to see the doctor.  
 
I:  So she has to come? 
 145 
R:  Yes, she has to come and see the doctor.  
 
I:  That?s the good example of the dynamics in such a relationship.  One thing that I 
am battling to understand is that you would have expected men not to be able to 
adhere but they do? 
R:  They do, but with the help of the woman.  
 
I:  Then, you spoke specifically more about black females and males, and the males 
who put the blame on the woman, bringing in the infection. 
R:  The males do that thing, involving the family to sort out the woman?s problem.  
 
I:  Why do you think the males do not want the females to take the medication?  
R:  You know, as far as I know, males like other people are very scared to face 
challenges.  They are very afraid, they don?t like challenges, especially life 
threatening challenges, you can rather come with a gun or a knife, so they can 
fight, but battles that are not fought, with weapons, they are scared of those 
things, confrontations and all those things.   So, in some cases, we find out that 
once a woman takes the initiative to say I don?t care, they can say whatever they 
want, I am doing it.  When the husband comes in, he will be surprised but 
husband knew about his status long before the woman knew, but he never told the 
woman he was infected, and never used a condom, and when you ask the reason 
why, they were scared to tell the wife.  They wanted the wife to find out herself. 
That?s why most of them get so violent in the first place, because ? you cant be 
scared of something you don?t know.  
 
I:  Do you think there are any factors that influence, how somebody thinks about 
adherence? 
R:  Ja.  You know the main problem we find with our patients is they start perfectly 
but when they go out, they listen to other people. They had heard somebody 
saying this thing about the ARV?s, that once you start taking this, you will start to 
feel well but then you are going to be forsaken and terminally ill you will die. 
 146 
Although they did the adherence and they understand the information correctly, 
but you know the power of the mind, because now, they are alone. The counsellor 
is no longer there, the sister from the clinic is no longer there.  There they are 
amongst the people that are anti ARV, so they put all those negative things, and 
then they believe, that this is going to happen to them and they even show them 
examples ? look at so and so ?? look what happened to them.  And now when 
they come back, those who are brave enough to come back and tell us that this is 
what is happening.  We ask them ? how long is the person been ill? was that 
person taking medication correctly.  What happened? Did they go back to the 
clinic to report that there were the side effects? Anytime you experience side 
effects, because you do not understand, do come back and so you can get clarity 
on what is happening with you.  Then they realize that that person died not 
because of the ARVs.  
 
I:  Why do you think though that this person would rather listen to those people in 
their community than to you, when you are the professional, who is trained to do 
this.  Why do you think that is? 
R:  Just to make a right example of the antiretroviral.  I am a Christian, I am making 
an example and I am suppose to know what to do and all those things, but 
sometimes you are in a situation when you are faced with people that believe so 
much in cultural things and they tell you about ancestors and tell you everything 
and go to the grave, and slaughter goats and everything. So, as I told you the 
power of the mind really, you will end up being confused.  Which religion?  
Should I follow the way I always do, kneel down and pray to somebody I do not 
know? Although you see that good things do come your way, because they are 
slaughtering, they think maybe God is coming.  But at the end of the day, it is up 
to you the individual to choose.  
 
I:  So it is human nature to reason?  
 147 
R:  That?s the thing.  You have to sit down and check yourself.  Even your kids, you  
can have 3 children.  Teach them same things but they wont follow exactly the 
same steps. 
 
I:  That is very interesting. If you look at an individual, and their environment ? like 
you spoke a little bit about that just now about people being surrounded by other 
people who put them off.  If you look at someone?s, you can almost say physical 
environment, do you think the environment plays a role in whether they adhere or 
not? 
R:  Please can you rephrase that?  
 
I:  If you have to look at the relationship of an individual in their environment ? 
where they live ? what they are surrounded by.  Do you think that that will affect 
whether they adhere or not 
R:  Yes, yes it will.  
 
I:  Tell me about that 
R:  I don?t know how much you understand about the cultures, as I touched the issue 
of ancestors, traditions and all those things.  You will find out that if you stay in 
JHB and originally your family, in-laws and friends are down in Cape Town or 
KZN, or anywhere in the rural areas. Then they know about your status, because 
you disclosed within the family or they find out anyway, maybe it is TB, even if 
they don?t know the status, they find out anyway, when you are sick.  Then you 
go down there and they ask you.  ?What kind of treatment are you taking??  You 
go to the hospital where they give me some medication.  Then they say, ?It is how 
you young people are, dying so much.  It is because you believe so much in those 
medications.  We?ve got this person or, we have Mr. so and so, who can do 
wonders, we have this and this and this.?  And the pressure will be on you. And, if 
you don?t take that because whether you die, don?t tell us, because you refused 
what they tried to give you. Some of the people are so dependent to their 
 148 
husbands or their in- laws that they find really they cant refuse and they have to 
follow what they say.  
 
I:  So, western medication which is what ARV?s are.  That conflicts quite a bit with 
the traditional black cultures? 
R:  Yes, because if you go to traditional healers, some of them will tell you that this is 
the things that make you so sick. You have to stop taking these things, and they 
will give you better things to use.  Things that are going to get much stronger. 
And then, you might start diarrhea, or they can start, this cultural vomiting, 
especially for a person with TB.  Once you have this, you have the sputum, and 
you?ve got these things coming out of you, medicine that just forces that vomit 
out. And they are going to be there, and they will say, ?See, this is what you have 
in you every day!? And this is how they convince you.  ?This is the signs.?  There 
is a lot of damage when that happens.  So we educate them on those things, 
because we know them.  And we know our families, and we just try and tell them 
exactly what is going on.  There are some churches where you find ?forced 
fasting?.  Maybe they say you are praying so we have to have a 7 day dry fast, and 
some of them take their fast in church, you have to go to church and they have 
keep on praying, so that HIV person will also have to.  It is not easy to keep those 
things when you are sick.  
 
I:  It must be extremely detrimental to your body to be fasting like that? 
R:  Yes, because you have to take your medication, and you cant take your 
medication on an empty stomach. And sometimes, you can also laugh, when I say 
to them ?I understand. I don?t say, ?It is wrong to fast?, but there is nowhere in 
Bible where I read that the Lord only hears prayers from people that are hungry.?  
I haven?t seen it, but it is an individual thing if you feel you have to do it, but with 
ARV?s you must think about what you are doing, because it does not go together.  
 
I:  I see quite a reciprocal relationship there.  Because do you think people fast, 
because they are praying for a cure. 
 149 
R:  Yes. They think the prayer is much more effective if you fast.  
 
I:  I do understand, but do you think these people are also drawn into the fasting, so 
that God can heal them? 
R:  That?s the thing, yes.  Because now really, as you are getting deeper and deeper 
with people taking ARV?s, looking at the adherence, and those who started with 
adherence, and we are now doing re-adherence, because people are taking their 
medication the whole times but now we look at the issues that made them mess up 
their treatment. We find that they went to a church, where they are told, ?There is 
no HIV! You just have to pray, and then it will go away.? There was another lady 
on Monday, she was told to come and test 3 times and on the 3rd time she will be 
negative.  We had to sit down with her and tell her the truth.  
 
I:  Where did she get that information from? 
R:  From the church. That is why there are so many churches coming up. So many 
churches. And if you look at their brochures, when they write there, they can do a 
miracle healing e.g. HIV, diabetes, they know that the people are desperate and 
they will go.  
 
I:  So you think that the church is almost capitalizing on the epidemic to get more 
followers? 
R:  Yes, I do really.  And I find it so difficult, because first they went to the 
traditional healers and now the traditional healers are now coming closer to us 
now. Because some of them even bring their patients to us just for the test, and 
they ask us, because this person is HIV positive. ?Can you please take this person 
for counselling. Give her the treatment, because HIV is so strong. I might cause 
more damage.?  That is what the Traditional healers are doing.  Now the churches 
are standing against us. 
 
I:  It is almost as if the traditional healers are coming around a bit? 
 150 
R:  Yes, they are. Because some of them are even here, and they are helping some of 
our patients too.  I asked one of them, ?Is it difficult?? What if you are going to 
attend the ritual where they are suppose to slaughter a cow, and do all those 
things.  And they said, ?Cindy look here, it is my life.  I will tell the ancestors that 
I am taking the ARV?s, so I wont be able to do some of the things. I do things I 
would be able to do like the washing.?  
 
I:  It is amazing.  Because I actually haven?t heard so much of this before. 
R:  We help them here.  
 
I:  In your opinion, because adherence is what you do, what do you think is the main 
thing that can be done to improve the patients adherence? 
R:  If only people can understand to take their lives seriously.  Not to leave their lives 
for somebody else. It is all that I can say.  I have seen other people who take that, 
who say those words, and the next time they come here, their viral load is 
undetectable. Then you ask, ?What?s the secret?? Then they say, ?You know what 
Cindy, I have  decided that this is my life and nobody else?s? and one lady said,  
?I am not a cat, I do not have 7 lives.  I have only 1 life, so I have to make use of 
this life of mine.?  
 
I:  That?s beautiful. 
R:  Yes, very. It?s up to an individual thing. It?s the willpower to live.  Just tell 
yourself, ?You are going to do this.?  
 
I:  There is definitely a point, where people think, a conscious point where people 
think, ?I want to live!?  Do you think some people can come to that point, and 
other people don?t? 
R:  I think it?s the way we take things. Lets put aside the AIDS thinking.  Even in life 
in general there are people who hold grudges so much that it ends up affecting 
them.  When you ask a person, ?Why hold this grudge??, the person who has the 
grudge, doesn?t even know.  You are not angry with that person.  You are angry 
 151 
with yourself. How do you deal with it? And is so painful for us counselors, 
looking at this person and knowing that this person can do so much better than 
they are doing, if only they can let go of other things. Those are the things they 
are worried about. ?They do not want to let go.?  
 
So I think again that it comes back to the individual.  And as a way we know 
about introverts and extroverts all those people. I prefer extroverts a lot, because 
they can talk about everything.  When they are angry you know they are angry, 
they can fight with you, but tomorrow they have forgotten about it. They have 
cleaned their souls of everything.  
 
I:  Do you feel that being aware of your emotions and what you are feeling are 
important in trying to conquer this? 
R:  That?s why we always encourage them to do that, ?We are there for you guys.?  If 
you got anything, there are people who can?t even talk to their family members, 
but when they come here, we try to encourage them but, but this is the place 
where, because I don?t know you, just take out everything. Because at the end of 
the day, in life, I have realized one thing. You might think that is a mountain 
when you think about it, but when I ask you what is that thing, you say, ?You 
know Cindy, take a pile of sand and you can take your shovel and just spread it 
around. You see a big mountain, so by talking to the next person, what you 
thought was a major problem, it is a minor problem, and it can be solved within 
minutes.?  
 
I:  It is almost a sense of comparing yourself to those in a worse situation, in a 
positive, outlook on how things are going.  
R:  That is why the support groups are so helpful to other people.  We sit there 
thinking that they have the worst problem in the world, and then, they listen to 
other people?s problems and they say, ?Hey Cindy, I am much better. You see 
that beautiful lady. Yes, that lady has got so many problems. I am much better 
that her.?  Then you see something good happen to that person.  
 152 
 
I:  You know I am listening to you and listening about the adherence programmes 
here.  Tell me a bit more about that, because I know that you guys have an 
adherence strategy in this part of the clinic.  Talk me through that a bit please. 
R:  With adherence, firstly when a person comes here, we book them with the 
adherence group.  The adherence group talks about things to expect.  What is 
ARVs? What do they do? All those things that are general talk.  Then we take 
them individually, one on one, to go and sit down with them and do adherence 
counselling now.  We look at the lifestyle of the person.  We look at the cultural 
thing, religion.  We talk about a lot of things that might be obstacles on his way 
and the disclosure.  The disclosure is the main thing.  Others think there is no 
need to disclose to your family, then we point out this thing that accidents do 
happen, and accidents can happen any time.  What happens when you are 
unconscious and you have to be admitted to the hospital, somebody in the family 
should know so they can tell the doctor who is attending to you. And we warn 
them about believing every medical person, because not all of them know HIV 
AIDS.  This will help them to know the full information, starting from the HIV 
information, what it is, coming to the city for counselling, what do the ARVs do. 
They are not a cure. It is just that they suppress the virus, you know. Knowing all 
that information will help a person when they maybe go to a doctor, only to find 
out that a doctor does not understand so much about HIV.  They will be able to 
pick up the things that the doctor does not understand what he is talking about, 
and they could be able to come to the hospital ? the best place is the hospital.  
They are helpful here. No matter how many chairs you change before you see the 
doctor, but in the end of the day you will get the proper treatment.  
 
I:  So you are quite confident in the training? 
R:  Yes, because they are well trained. You see, usually people with medical aids 
actually, who come from private doctors and taking ARV?s, ?I have never been 
adherent, and not even been counselled.? They take the treatment, whenever they 
feel like taking the treatment.  And when they come here they see that the medical 
 153 
aid has been exhausted, they have been referred to the hospital, and when they 
come here, they are already resistant to treatment.  It means there is so much 
different, which means we must now start from scratch and person will be 
dwelling on those things ? why did I waste my time, if only I knew.  So we are 
dealing with 2 issues.  
 
I:  The resistance and the adherence? 
R: Yes.  
 
I:  Now if a person comes to this clinic the first point of entry is the adherence 
group? 
R:  No.  If you haven?t tested it is pre-test counselling.  
 
I:  No, with specific regards to adherence. 
R:  Oh, adherence.  When the count is below 200 then you start talking about 
adherence.  
 
I:  And they go to the group. 
R:  Yes they go to the group.  
 
I:  And who gets individual counseling? Does everybody from the group eventually 
get the individual counseling? 
R:  Yes. Because in the group, we have different groups here. The wellness group, 
they give them their CD4 results. The CD4 counts below 200, that is when they 
start talking about adherence, and we invite them for Wednesday?s group which 
are an adherence group. Those who are leaving for the ARVs, we give them about 
2 days to go home and to think about it, because they tell you after you gave the 
talk that, ?You know what Cindy, I am not good at taking tablets.  I?d rather go 
and practice first, so give me a doctor?s appointment? and they see the doctor on 
the Thursday.  We do not let them go without any counselling and when they are 
ready, they take the doctor?s appointment so they can be seen by the doctor on a 
 154 
Thursday and when they are ready then they go through the adherence 
counselling, so they can prepare for the antiretrovirals.  
 
I:  Earlier, you mentioned  something about 6 months later.  
R:  6 months later they come back and we re-do the adherence.  We even started a 
support group on Tuesdays.  We sit down and talk about things, the fears, good 
things that came up. You know they are in a group, they are going to tell us 
stories. It was easy for them to say they are going for ARVs not realizing all the 
problems along the way. So it is a good place to talk about such things.  Every 
Tuesday we have the support group.  
 
I:  What do you think was their main barrier? 
R:  The main barriers?  
 
I:  That come up, like even practical things. 
R:  Ja, you know.  The first one is disclosure, because right now sometimes a person 
can collect the medication. But they sit there, take another container, empty all the 
containers and throw them in the dustbin. That is the problem.  
 
After disclosure, we have this thing in relationships. We find that the husband is 
very strong when he looks at himself. Then the wives start taking ARVs and 
there?s this thing, that once you take ARVs you are about to die.  And they don?t 
take their ARV?s and they stop.  
 
Also, a person going to the wrong person and getting the wrong information.  
Everything affects adherence.  When the person missed and appointment, go to 
the house and make another, to tell the person about the dangers of not adhering.  
 
I:  If you have to think about an intervention to help patients ? do you think it should 
be at individual level or community level or both? 
 155 
R:  Both, I think both.  They are both important and they need to educate each other.  
But is doesn?t always mean that by helping the community, you help the 
individual. Sometimes you find that the family are so much supportive and that 
they were educated, but the patient is still in denial. If an individual is affected, 
the family is affected. So, even the involvement of the family I think it helps, 
because right now the thing with the communities.  There is this thing, I don?t 
know where they got it from, is that ARVs kill.  Don?t ever, ever take those 
tablets. They are going to kill you.  And when you ask, how many people were 
killed by this medicine, they say no we heard they are highly toxic they can kill 
you.  Also, side effects. I would like to refer them back to the doctors to show 
them that any other treatment, has got that paper which is written with everything 
about the side effects.  Everything we take has side effects, even coffee, even cold 
drink. I think it is just that the side affects of the ARVs are just so much more 
visible and just so much more intense but not all people get them. And some of 
them only get minor side effects, that?s all.  
 
I:  Where do you think people get these misconceptions from, where do you think 
people get perceptions of this toxic thing that kills you? 
R:  Wrong information, especially in medical field is common and I believe that 
anything that is happening for the first time, people will have a lot to say for 
obvious reasons.  People will say negative things and positive things, until they 
get used to that thing and something new comes, and they say oh, we can 
concentrate on the new thing.  Because the ARV?s are still new to the market.  
These are still new on the medical side, even the professionals, are still making 
mistakes. There are people being admitted, and things stopped by the private 
doctors, and they say that it is because they are like this.  Then another patient 
comes here to this department, and says no you are not suppose to stop.  So, we 
educate our patients, so that once the doctor tells you to stop try to call the clinic. 
To try and keep contact numbers and everything, so that the doctors can 
communicate.  
 
 156 
I:  So you think it basically is new, and has to be tried and tested, and people see it 
working? 
R:  Even professionals have to see and learn about ARV?s, because now it confuses 
the patient, if the one doctor say this and the other says that.  Some patients don?t 
know who to trust, and then go back to the traditional healers.  And those rumours 
spread faster than anything. That?s human nature as well.  
 
I: Thank you so much for doing this interview ? it has been so helpful. 
 
 
 
 
 
 157 
Expert 2 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
I:  The first thing I would like you to do is to basically tell me what kind of work it is 
you do here.  
R:  When patients with a count of about 200 come here, we just monitor them and see 
where are they after every two months.  And we also sponsor patients for a certain 
time and then we refer them to other government roll outs, like the Helen Joseph 
in Auckland Park.  We give them free medication while they are with us. And 
also in other provinces, where there is a demand for medication and low supply, 
we supply that.  
 
I:  You mentioned a bit earlier that you are involved in other aspects of working in 
the HIV.  You want to tell me about that also.   
R:  Firstly, I worked as a care-giver in Vosloorus, looking after people living with 
and dying of HIV. And I did a bit of counselling while I was there. Then, also for 
the past year and a half I was doing project management, going around the 
country giving education around HIV antiretrovirals and adherence and just trying 
to support those people who are living with the virus.  
 
I:  And how are you been working in the whole HIV Aids field for? 
R:  I started in 2002 to presently.  
 
I:  So it has been quite a long time? 
R: Yes.  
 
I:  The antiretroviral medication just been introduced to the public sector for the 
individual person who is taking the medication.  Do you think that there are any 
specific types of people that will be better at taking the medication or not? 
 158 
R:  Well, firstly it should be the disclosure.  If somebody hasn?t disclosed to their 
immediate family or to any person who is close to them, it is very difficult for 
them to take their medication. And secondly, with the fear of the side effects, they 
have no information about the side affects and also the stigma around HIV.  
Those are the major ones that I think also.  Also nutrition.  Other people say, 
?How can I drink medication without having food on the table?.  Some African 
shares some African potato and all those stuff like people will say, ?Don?t take 
this medication, it might kill you.  If I can go to a sangoma,? and the myths 
around AIDS.  
 
I:  Would you say that there are like certain types of people, like certain categories of 
people for e.g. white, coloured, black or Indian people.  Any types of categories 
of people that in your opinion will take their medication better? 
R:  What I have seen, if you are white or Indian or coloured, they are the people who 
take the medication better compared to the black community. I am from a black 
community with people with a total lack of knowledge around AIDS. Not 
knowing what to do, or how to start the medication or where to go.  To take or not 
take their medication, or if they take it, they do not take it properly.  
 
I:  And do you have any reasons for why that happens? 
R:  As I have mentioned before, disclosure, the family not knowing.  Also, what the 
treatment says.  The usage of the condom between the two. You keep from 
infecting yourself, and but you are admitting your status. And also what I have 
seen, is that other people they just forget to take their medication you know.  They 
just say, ?I forgot to take the medication.?  
 
I:  I would like to get a bit more information from you on that but I will come to that 
just now. Are there any other sort of categories that you can think of? Have you 
seen that certain types of people are more apt to take medication? 
R:  Well, a recent case is that there are people who are in the prisons which is a very 
different scenario. People take their medication when they have to go back to get 
 159 
their follow up, the prison wardens don?t bring them back. Then, a week or two 
passes without them having their medication, which is a great challenge now.  
People who are in prison now, and who are taking medication will have to go and 
take the from the government clinics outside at other departments.  
 
I:  Would you say that, that may have more to do with the fact that the wardens 
themselves are not being responsible enough for bringing them there? 
R:  No it is because of the authorities in the prison.  But the people who are working 
on this side, who are part of the TRC?s project, those practitioners ensure the 
distribution of the medication.  The prisoners always complain that the prison 
wardens don?t want to take them back to the clinic for their appointment. And on 
the 15th and the 25th and the 29th when they get their salaries, they say that they do 
not have time and by then, the medication ends.  Their allocation are also taken 
and given to other people, which is very, very bad.  And sometimes, the prisoners, 
they work shifts, one was working in the morning that and the prison warden gave 
his medicat ion at 9.00 in the evening, so they don?t give the prisoners their 
medication at the right time. They even forget.  You know all those things.  
 
I:  Would you like to comment on any of the factors that affect a person?s 
perceptions of the actual antiretroviral medication? 
R:  Personally, I think firstly that the whole thing with the HIV is disclosure. The first 
thing is that people need to come out and live with the virus or come out and be 
an example to the community.  There is nothing wrong with being HIV positive.  
We have to change our lifestyle and try to live positively, and also the stigma and 
also going back to the thing of the beliefs that people have in terms of politics and 
those stuff.  
 
I:  So you do thing that the political part of it does play a big role? 
R:  It sure does.  
 
I:  Do you want to tell me a little bit more about that? 
 160 
R:  What is happening is that we have AIDS activists who are promoting their own 
things against the antiretrovirals.  No matter what, at a certain point of time in a 
HIV positive person?s life, they need to start antiretrovirals and they also need to 
highlight the side effects. It does have the side effects but even myself, I am on 
treatment. So, I know it works very well, even with the side effects. But I do eat 
good food, but then there are people who are rich, who have good nutrition, but 
because of this myth which surrounds ARVs, they are afraid to take and 
eventually they die.  
 
I:  Do you think that the way society looks at HIV and antiretroviral medication 
plays a big role in whether a person decides to take it or not? 
R:  I would say yes, that is why we have a challenge. As much as we must allow 
people to make their own choice in terms of the decision if they want to take, but 
also we must not run away from the fact, that the usage of the antiretrovirals 
eventually works for someone, especially if you start at an early stage. You do not 
have to wait until it is very low.  There is one thing we should not forget and that 
is that for someone that has a count that is very, very low in terms of the side 
effects, it is already happening when you start taking the antiretrovirals. And 
when it starts working in your body, you may have a low resistance and be prone 
to infections or maybe your body cannot cope with age.  So, the earlier the better. 
Also with regards to society, I feel we must do lots of education, more teaching 
the people about using the antiretrovirals. And the people that are using them, 
then they must come out and tell their stories, so that people can see.  
 
I:  Are you saying that a patient should not wait until they have a CD count of say 
under 200?  
R:  Well, you can wait until it is below 200, that is what the government has 
stipulated, before that you can have the antiretrovirals. That?s if you go to the 
government site. But also if your count is below 50, it is a good time where 
someone must start taking the ARV?s or if someone maybe has a count of 666, 
but still clinically shows stage 4 symptoms, this person is very, very sick.  They 
 161 
should start on the antiretrovirals immediately. It?s dangerous because if they look 
at the levels, and they say you do not qualify for the antiretrovirals, you must wait 
until the count is below 200 but you may still be able to take them.  
 
I:  If you had to look at the relationship between a person and their surroundings, 
how important do you think the environment is, in influencing whether people 
take their medication properly or not. 
R:  Well, looking at someone?s environment and whether a person is taking his 
medication or not, firstly it is the support that he has around him.  And also, the 
behaviour. If you are smoking, or you are drinking; because those factors 
especially can make someone forget.  I used to drink myself too. I thought I 
needed to but eventually I had to stop because otherwise, I would forget  to take 
the medication. Or you go somewhere and you forget your medication at home, 
and when the time comes for you to take the medication, you don?t have it.  And 
also, to go back to the disclosure. The issue of living freely in the environment, 
that one must not be scared of taking the medication freely, wherever you go.  
And also the support and the stigma around HIV, and the lack of understanding 
the disease amongst the communities.  
 
I:  For those patients that have received the medication, what do you think can be 
done to help them take their medication on time? 
R:  They must have a treatment supporter.  Someone who is going to weekly monitor 
that person.  And someone who can follow up.  It is very important, besides, to do 
a follow up on patients on the medication. To see where and what is happening 
also.  And also people must encourage each other to take the medication and be 
told what is the importance of taking the medication.  And get the education about 
taking the medication and the benefit of taking it.  
 
I:  When you talk about a treatment supporter, what do you mean? 
R:  Someone who is going to be there for you.  Like a daughter supporter.  Someone 
will come around and see that you did take your medic ation. ?Do you feel well? 
 162 
Do you have any side effects?? Someone to give you the support, you know, so 
you can take your medication.  
 
I:  You also spoke about the education around it? Can you please explain? 
R:  It?s very important.  Should the person start he must be told about adherence, 
when they started taking the treatment, they must continue.  They have to be 
reminded at all times.  People need to take responsibility for their own lives.  That 
person who is going to remind you all the time sometimes may forget but you 
must not forget.  There are many ways to do adherence, because I remember when 
you attend the clinic, they told you the ways of how can you remind yourself of 
not forgetting. And to take it at the right time every day. The thing is if you have a 
cell phone, you must put in an alert. Reset the alarm. You can keep a chart that 
you can put in you bedroom or on your fridge or wherever in the house.  When 
you look at it you can remember or when you are watching TV and taking your 
medication at 8.00. And, that once ?Generations? start, you take the medication.  
All those methods. Even use your own methods that will just remind you to take 
your medication.  
 
I:  What do you see yourself and the organization that you represent doing to help 
people to take their medication?  
R:  As an HIV positive person who is on treatment, I do interviews, I talk about the 
usage of antiretrovirals in my life.  Before I started the treatment, and after taking 
it and I was also fighting for the better services of people living with HIV at an 
organization, and also tried to correct the myth around HIV.   
 
I:  Presently, what does your organization focus on? 
R: We try to train people around everyday issues, that they need to take their 
medication and not stop.  They need to go immediately to their doctors, and also 
if they have any difficulties they should contact us or call our services in the 
health districts or service points around the vicinity.  They need to report to us and 
 163 
find out what is happening.  They need to  inform us if they don?t get the 
treatment. They also need to treat whatever other illnesses they are having. 
 
I:  If you have to think of intervention that is going to improve adherence, do you see 
it working mainly at an individual level or mainly in the community level? 
R:  I could say both initially, because what we do now is we are also running 
workshops about adherence to individuals and for groups around the country.  I 
know that even this week we have a workshop to train the patients in adherence, 
the ones who are taking this medication.  The taking of their medication at the 
right times, and what are the treatments offered is covered. So, we treat 
individuals and pass information on to the community.  We?ve got our book 
called Equal Treatment that we take to the train stations, taxi ranks, to everybody. 
As an organization we can read and listen to the other peoples stories around the 
country who are taking the medication. 
 
I:  Thank you so much for agreeing to this interview with me. 
 
 
 
 
 164 
Expert 3 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
 
I:  Thank you so much for agreeing to do this interview with me.  The first thing I 
would like to ask you is, could you please tell me about the work that you?ve been 
doing here. 
R:  I am a medical officer employed at the hospital, and my primary goal is to be a 
hospital doctor.  To work and get help get to the patients here.  I have taken 
interest in the HIV Aids programs and over the years have tried to create 
programs with the help of another organization and the department of health, to be 
able to offer our patients the continuing of care in terms of all the different 
requirements required by HIV patients.  We are looking at setting up a mother to 
child transmission program, voluntary counselling and testing, TB, home based 
care, a hospice, orphanage and wellness centre.  Those are all the types of things 
that we have set up, and I think the most exiting one is the recent introduction of 
antiretrovirals, to the community for the very first time after many years of 
waiting.  
 
I:  When did this hospital start? 
R:  We handed out our first antiretroviral therapy on the 6th October 2003 to a group 
of 6 patients, and that was sponsored by Yale University with a special study that 
we are doing. And the Yale study has increased to 75 patients at the moment, but 
there are 65 or so patients on the Yale project. It gave us confidence 
understanding Yale, and seeing them in practice and also implementing such a 
program, in a rural community.  We were the first hospital in Kwa Zulu Natal to 
hand out antiretroviral medication through an international program.  The date 
was 24 March 2004, and we started with that and we are about a year later now 
and we have about 400 patients on this national program, including 25 children 
that are on the program.  
 165 
 
I:  When you first started to give out antiretroviral medication, did adherence 
become an issue? 
R:  Even before we started, our mentors and our investigators of the Yale program 
very, very much highlighted the importance of adherence, as the centre of any 
antiretroviral program, and we were in a very privileged position of being 
coached by world class experts in adherence. They very much brought to the front 
the different issues of adherence, and what we put in place, before we started 
antiretrovirals, there was very thorough patent for adherence. As I say, we really 
took a lot of trouble to address the adherence issue and to try and put in all the 
checks and balances, and when we started with the antiretroviral program the 
adherence took well.  
 
I:  How did you go about doing that?  What sort of procedures did you put in place 
to help patients adhere to their medication? 
R:  What happens is, that the patients go through a patient preparation program, and 
this usually involves 4 teaching sessions on different occasions, where the patients 
interact in groups or can be one on one, where they learn and go through all the 
steps.  Topics that are covered are things like positive living, medication, names 
of medication, the importance of preventing resistance, the CD4 counts, 
understanding CD4 counts and viral load because that is very important in the 
future monitoring of the patients.  They need to understand that the CD4 count 
that is going down is not a good medical result. They need to understand this and 
they look forward to hearing their next CD4 counts. We made a distinction 
between adherence and compliance.  Compliance more gives you the idea of the 
patients following an instruction. It has something to do with obedience, whereas 
adherence is a more active participation of the patient, where he takes 
responsibility for himself, and understands as much of the picture as possible, so 
that he can buy into, and to operate and participate in something that going to be 
beneficial for his own health.  
 
 166 
I:  I just wanted like to ask you a few things around adherence and not compliance.  
The first one is, if you have to consider an individual who is taking the 
medication.  Do you think there are any individual traits that affect how a person 
responds to the medication in respect of how well they take it? 
R:  There have been many studies done.  We try to predict who is going to adhere and 
who is not going to adhere, and what they show is that doctors are the least 
competent people in the way to decide who will adhere. When I say doctors, I 
include professional health care providers.  We might be tempted to think that the 
patient who regularly comes to the clinic here, regularly makes it his perogative, 
answers all the questions right, and etc; that he is going to take responsibility at 
home, but that has not proved true at all.  There are very, very few factors that you 
can isolate and say that if the person scores well in this factor the likelihood of 
adherence is going to be good.  So the blue collar worker coming in his Mercedes 
Benz to work everyday might not be as good with adherence, as the street 
sweeper who is uneducated who is better with adherence.  Obviously somebody 
who has an alcohol problem, who is having a psychiatric problem, who is 
depressed, who has got an addiction problem, those are people who you need to 
do a really, really good assessments and definitely bring in support to help them 
with adherence.  What I do believe is that one of the most important factors in 
adherence is a good health care provider in a relationship.  
 
I:  Do you want to speak a bit more about that? 
R:  I think if you can develop a health care provider patient relationship, where 
there?s an open, warm, understanding and communication between the two 
groups, and there is an element of trust both ways, and the patient feels well 
informed, and he feels very much included in the team and has an opportunity to 
voice his concerns, his problems at home and any barriers that he / she might 
think that might impact on the adherence; those will be very important things, and 
one of the most important factors of adherence is that relationship between the 
health care provider and the patient.  
 
 167 
I:  In your experience have you noticed any specific types of people that will be less 
likely or more likely to adhere to their medication. 
R:  No. What I have been surprised at is that going through the patient preparation, 
that we were talking about and establishing the health care provider / patient 
relationship that all types of people are able to adhere and that includes your 
illiterates or farmworkers. It includes your school teacher. It includes your school 
principal. It includes a very sick patient.  Right across the board we have seen 
amazing adherence. 
 
I:  Would you like to comment on any factors that you feel influence one?s 
perceptions of ARVs? 
R:  Yes.  There are obviously many factors.  I think we had a big disadvantage.  
Before ARVs, there was a lot of negative information coming over, talking about 
side effects, talking about problems with cost, cautions about it not working 
because of adherence etc, etc.  And our community took this up and they heard 
about it.  Having said that, our community was also dying because of HIV and 
AIDS, and every single family either had a person in their family or a close 
relative or friend that have died in the last two or three years because of HIV 
AIDS.  The reality of the epidemic is that it is very real to the community, and I 
think in the beginning people started taking ARV and I am talking about sick 
people with low CD4 counts, and within 3 months they had undetectable viral 
loads and weight gains of about 6 ? 12 kg and feeling much better, and feeling 
that they are on the road to recovery.  This, in the community speaks lo uder than 
any words that we could talk as doctors and staff, and so you had this word of 
mouth advertisement in the community of living people who were improving 
because of the anti retroviral therapy, who themselves remembered where they 
came from in terms of how sick they were, in hospital, in and out, losing weight, 
not being able to look after their children, losing their jobs etc, etc.  And I think 
the fact that the epidemic was allowed to go so far before antiretrovirals came in 
really had a massive impact on the community, so that when something came that 
can really turn it around, their very lives depended on it. And you can see it in the 
 168 
teaching groups.  They will sit on the edges of their chairs, listening to every 
single word that is said about the medication, the right times to take them and 
what they must do.  There?s really that understanding that, ?This is my life!? and I 
think that that is a huge factor in adherence.  
 
I:  You?ve already spoken about society?s perception via the media, and how the 
individual conceptualizes the treatment.  Can you think of any other ways that 
society affects whether the individual responds to the medication or not? 
R:  I think we are just touching on it.  We are working here in a rural traditional Zulu 
community. This type of chronic disease, slow progressing, taking the strength 
out of a person?s body. And our patients go to traditional healers and use 
traditional medicine, and for many years, us as doctors have been saying, we can 
help you with the signs and symptoms, but we have no cure.  And we were very 
frank about that.  We made very sure that the patients understood that we could 
not offer a cure.  We didn?t want anybody to be deceived to think that the 
medicine they are going to get from the hospital was going to cure them. That?s 
where the traditional healers said, ?Well let?s try.  You give me a cow, and I will 
see,? and they even went further to claim and point out stories about cures. We 
work with quite a few patients and when things suddenly change we still say that 
we don?t have a cure but we have something good that works, that can turn it 
around.  I think in the community itself, this might have taken some time to set in 
and for people to believe it.  You know people were in a situation for many years, 
where they were very desperate for any cure.  They came to the hospitals, we help 
them with their TB, the TB got worse, we help them with TB medications, so the 
TB got a little bit better, they went home, but they were back in hospital with 
something else. They were in and out, in and out and they could feel themselves 
deteriorating.  And they can see they are getting thinner and thinner.  So they 
started pursuing other things.  Magic cures they heard about. You go into people?s 
homes and you find a who le string of medication over there. So, it was driven by 
desperation in that period, and I think there were so many false promises and so 
many people making irrational claims, plus that negative media I was talking 
 169 
about and then suddenly, the information changed.  Perhaps they were cautious in 
the beginning.  
 
I:  If you had to comment currently.  If someone found out they were infected do you 
think they would go to the hospital first, or would they try traditional healers. 
R:  They would first try traditional healers. The medication they get from traditional 
healers are still much more accepted and much more in line with culture when 
compared to the ARVs that the hospital gives out. What we frequently saw is 
kidney failure, liver failure, severe anaemia, and blood function disorders, that 
came in as side effects or as consequences of intoxication.  That was our bread 
and butter for a long time over here, to see that happening.  A good story would 
be a person who is HIV positive, coming in, they get better on TB medication, 
going home and feeling quite strong on their legs, and a week later coming in with 
renal failure. And we do all the tests, confirm renal failure and then find out that it 
was intoxication.  A big story was made about the African Potato being an 
immune booster.  The African potato has been proved now to interfere with the 
actual antiretroviral therapy.  So, there are many formulations going around, 
which is like a vitamin supplement, plus all the different goodies. And when you 
look on it, it says African potato as well, as an ingredient.  We cannot use that 
type of thing with the antiretroviral therapy because you want your antiretroviral 
therapy to be observed and to work properly and you don?t want to be under 
dosing the patient, even though they are taking the full dose, but it is not absorbed 
and they are getting under dosed.  Just to give you an example, I had one of my 
very first patients was a nurse, who actually had access to antiretroviral therapy 
through her medical aid. She was very sick when she started and she did quite 
well, really recovered to the point to come back to work.  And she was on ARV 
therapy for about 4 or 5 months making slow but steady progress and one 
Saturday morning she was brought in by her family in a semi-coma with renal 
failure.  She was more or less unconscious.  I could not understand this, and 
thought this is some side effect that really hit hard, and I phoned a consultant in 
Durban who frequently gave advice and I presented him with the picture and the 
 170 
first thing he said she is that she is using herbal medicine.  I said that this is not 
possible.  He said she is using herbal medicine, so I asked the family, do they 
think it is possible?  And they said they don?t know, and they don?t think so.  We 
admitted her and I got her transferred to ICU and in all this activity, somebody 
from the family came back home with a packet of things and they said this was in 
her top drawer next to her bed.  And there it was, herbal medication.  You know I 
am not saying that there are not herbs that can?t improve the immune system and 
make an impact, but what I am saying is that antiretroviral therapy has been 
proved beyond a shadow of a doubt that that alone can afford a huge improvement 
in patients.  That is the only real thing existing today, that gives the best results, 
so I would like to offer them to my patients as a first priority. And so we actually, 
we can?t prescribe to any patients that he don?t use herbal medication. The 
responsibility to keep them in the picture as to how the herbs work together with 
the antiretroviral therapy and try and explain rather than saying, ?Don?t use herbs, 
and herbs are dangerous.? Rather say, ?Herbs can do this and that,?  just have an 
open discussion and using herbs and try and keep that open door for 
communication, because I can guarantee that there is a huge amount of pressure to 
use traditional medicine. And the reality about the use of traditional medicine is 
that we want to be able to interact and not have created a closed door, where they 
feel terrified talking to the doctors, when telling they are using herbs. ?He is going 
to blow me out of the door.?  Tend to be able to feel free to talk about it.   
 
I:  Are there any other sort of myths or cultural beliefs systems that seem to interact 
with the adherence to medication? 
 
R:  There might be. Talking about the important ones and to say that what we are 
doing is working.  If it wasn?t working, I would be forced to talk to patients to 
find out what is happening. But with 65 patients in the program there is almost a 
100% round the clock brilliant adherence, so it is working, the patients are taking 
their medication.  Just talking to patients in the evening, they tell us all and say 
?Hey doc, that is my reminder to take my medications at 18.00 now.?  I have been 
 171 
on ward rounds and the patients have a clock in front of him watching the hand, 
and waiting for the hand to touch six o?clock, so that he can take his medications 
on time, and this is so brilliant.  Patients really believe in the medication, and 
they?ve got to believe in it.  And this has happened.  Patients say, ?I remember 
where I come from, and I don?t want to go back there.  My sister died, my brother 
died, and I felt that I was on that road and I am off that road, and I do not want to 
go back there.? So those are very important factors.  ?I saw my neighbour, he 
started on antiretroviral therapy and he is much better, and he has gone back to 
work and we saw the living testimonies of keeping people to adhere.? (E3) 
 
I:  Do you have many follow ups with regards to adherence? 
R:  No, the home based care is like a treatment supporter in the community, but you 
can use things like the local clinic, seek and organize small groups to come 
together in a taxi and small things like that, that can help.  Like little 
organizational things that help.  
 
I:  We have spoken a lot about the social environment, and how social perceptions of 
whether they take the medication or not, but if we look at something a bit more 
concrete the physical environment.  Do you think that the environment affects 
whether someone takes their medication or not? 
R:  Well, somebody who doesn?t have food on the table, because some of the 
antiretrovirals. Some of the patients just generate a roaring appetite and that is a 
sign of the body building up strength to strength and they just need to feel the 
energy from lots and lots of food. So, there you have a problem of a patient who 
feels hungry because of the medication, so the health department has provided 
food supplementation which we give out to and it is readily available. And, we do 
not have a short of supply or anything that in fact my problem is that there are 
boxes and boxes of in our offices and it is in the way but we use it when we give 
it out to our patients.  You cannot live eating porridge three times a day but at 
least it gives them one good meal a day.  There is patients that are so sick with 
such a low CD4 count that it is not actually physically possible for them to come 
 172 
in a taxi and reach the hospital.  We provide for those people by actually 
admitting them into our hospice and the hospice has turned around from our old 
traditional idea of looking at terminally patients till they die to being a place 
where the seriously ill can recover.  
 
Poor social support and emotional support from family members or the lack of 
having family members are also important things in the adherence.  We actually 
ask our patients to bring with them a family member to the adherence classes, so 
that we can include the family member as part of the support team and that is one 
thing that has been proven. That there is better accuracy when he is not doing it 
alone, but when there is a family member that knows what is happening.  And 
often the guy would say ?I don?t have anybody,? and it is not something that they 
are not willing to discuss. They really do not have, anyone, they have gogo, but 
she is sick, and not really able to do anything.  The ladies are really on their own, 
with not much support from anyone.  That is also a problem.  
 
I:  Is disclosure part of your disclosure admittance criteria? 
R:  No, but we strongly recommend it. And for the Yale study it is a exclusion 
criteria.  I wont put somebody on the study unless I have actually had the 
opportunity to meet and speak to members of the family.  And like I said we need 
a 100% compliance there.  In the roll out in the national guidelines, it is not 
insisted on, so we don?t have that as an exclusion criteria.  It is strongly 
recommended though.  
 
I:  So, what advice would you give to help people to adhere better to their 
medication?  
R:  In the antiretroviral therapy context, to make sure that the patients understand 
themselves, everything.  I would also try and make sure that the patient is not 
depressed. I would also see that there is in place a friend or family member or a 
social contact that can help and I would establish a friendly relationship with the 
patient if possible, and create that sense of feeling that it is not a once off thing.  
 173 
The patient is going to go home and there are going to be problems and there is an 
open door for discussion and the patient must feel that, ?If I have a problem, I can 
access help immediately, ask questions and get clarification.?  
 
I:  What role do you see the hospital playing in helping patients to adhere to their 
medication?  
R:  We provide the patient with counselling sessions. We provide the patient with 
interaction. We provide clinics. We have an open door, virtually from 7 in the 
morning to 7 at night, not including weekends, where patients can come in any 
time and ask questions and get help. And we have community workers in the 
community.  We try and link every patient with a home based care worker or 
direct family member. It is also a home based carer who knows about the patient 
and we visit the patient once a week when they are ill.  That is the kind of a 
support systems we establish.  We also encourage the patients to join support 
groups, and they come to support groups, and that makes a difference.  
 
I:  What role do you see with other hea lth care professionals in helping patients with 
regards to adherence? 
R:  What you need from the other health care professionals is that we all speak the 
same language, and we are all are part of a team.  That is what we would like to 
achieve. And for instance, if a patient gets side effects and it is on a Saturday, and 
they arrive in the out patients department, and are seen by a doctor who is not part 
of the antiretroviral team, what we would like is that that doctor is sympathetic to 
the patients problem and has been able to pick up that this is a side effect of the 
antiretroviral therapy, and know what to do about it, and then that patient are 
admitted to the ward, and needs bed side care, and taken care by the medical staff 
and antiretroviral therapy, and they keep on encouraging the patient.  The clinic 
sister out there in the clinic must also be aware of the problems, when a patient 
presents himself at a clinic and the clinic sister is also sympathetic and 
understanding so ideally you looking at the whole network being important to the 
 174 
whole antiretroviral efficiciency. Knowing what is happening and interested in 
continuing the adherence message to the patient.  
 
I:  If you had to conceptualize an adherence intervention, do you think it should be 
pitched mainly at the individual level or community level? 
R:  I think what we have done well is the individual patient preparation that every 
patient goes through here in the hospital and each patient goes through it.  What 
we would like to build up is to put in place a community understanding of 
antiretroviral therapies, awareness of those that benefited, and to have an 
informed community that are aware of all those things. And that is going to take a 
long time, but it is something that should be done and must be done, and people 
like school teachers, church leaders, indunas, regional authorities; these are all 
people that need to be involved. It is a huge task but I would definitely want to 
include that in the adherence programmes. 
 
I:  Thank you so much for giving me some time on this. 
R:  I hope it was helpful. 
 175 
Expert 4 
Key: I ? Interviewer 
        R ? Respondent 
   ?.... - Pause 
 
 
I:  Hi. Thank you so much for agreeing to do this interview. The first thing I would 
like to ask you is; to briefly describe the work that you do. 
R:  I have 2 main jobs.  The one is with the World Health Organization where I am 
working with the 3 x 5 initiative, that is to get 3 million people antiretroviral 
medication by 2005 and I am specifically looking at the mental health issues that 
are linked to that.  One of them being that people?s mental health has a bearing on 
their continuance and adherence on antiretroviral medication and therefore one 
needs to intervene at a mental health level to try to level the success of the 
program.  So I have been developing materials and so on to do with that 
internationally.  And my other job is on the human sciences research council 
where I am a researcher in the area of the mental health and HIV AIDS.   Looking 
at various aspects.  
 
I: And how long have you been involved in this type of work? 
R:  About 2 and a half years.  
 
I:  If you had to look at the individual, who is taking the ARV medication, do you 
think there is any individual traits or behaviours that would influence adherence? 
R:  I am not quite sure what you mean by traits.  Obviously there are personal issues, 
which determine whether a person is going to take their medication or not.  I don?t 
know if there are personality traits as such. Certainly I think that issues around 
whether the person has disclosed or not and the reasons why they have disclosed 
or why they have not disclosed might well be related to who they are and to what 
kind of approach will they have. And certainly issues of disclosure are going to 
determine whether a person is going to adhere or not adhere.  So I think disclosure 
 176 
is one important issue.  I think, I suppose to get to where I?m at, I think that a 
person?s mental health status is quite important to whether they actually do decide 
to continue with their medication or take the medication or not.  And why upon 
difficulties it is to differentiate between mental health status and personality trait.  
But, I think if for example, somebody does not really care much about themselves 
and about their futures and their lives, and whether they live or don?t live.  It is 
going to have a bearing on whether they decide to continue with the medication or 
not.  To what extent they are prepared to tolerate the side effects if they are, but 
certainly I think people who have a greater will to live, and who understands 
some of the medical issues involved, are more likely to adhere than people who 
have lesser of an understanding and less of a will to survive.  
 
I:  In your experience have you seen any specific types of people or categories of 
people that are more or less likely to adhere to ARV? 
R:  You are trying to get me on the personality thing again (laughs). I must say I 
haven?t worked that much directly with ARV programmes, so when I talk it is 
more from what I?ve read in the literature and from specifics, but certainly I think 
that issues like education do come into it, understanding of the medical issues.  I 
think people in poverty are probably less likely to adhere and to have the ability to 
adhere than the people who are better off.  
 
I:  Why do you think so? 
R:  Why do I think so?  I think that firstly poverty is linked to nutrition very often, 
and I think that taking medication on empty stomach?s and things like is quite 
difficult for people and I think once they start feeling the impacts, their motivation 
becomes decreased.  I also think that very often people in poverty have or feel, 
some people feel that they don?t have quite the same reasons to live as people 
who do have food in their stomach and are able survive in better circumstances.  
And I think that poverty is also linked to education and as I said earlier, education 
is a big issue. And possibly in South Africa also there are mixed messages and I 
would suggest that possibly people who are less educated, less or living in more 
 177 
dire economic circumstances may be able to assess the pro?s and cons of it less 
dynamically and therefore might be influenced by different messages as well. And 
I think that there are probably political issues there that probably in South Africa  
people who are poorer are probably greater supporters of the government perhaps 
and if they are saying that antiretrovirals are more ??they?re more sceptical 
towards them than many of the followers.  I think that there may also be relations 
between more traditional beliefs and poverty situations in South Africa . So I 
think that some traditional force towards saying it is our indigenous remedies and 
solutions where we can understand why this thing is happening to us. And I think 
that the question of ?why me?? and ?why is this happening?? are very different 
from people who have traditional beliefs about health and illness. And that if you 
say, it maybe because of such a witchcraft or such a displeasure of the ancestors 
or whatever then you are going to take a different approach as to why I got ill and 
therefore probably a different remedy to getting yourself better.  I think that when 
I say poverty, you say why?  I think you can never separate poverty out from any 
other issues, especially in a big country like South Africa, although I think that 
poverty in itself and probably internationally is an issue too.  
 
I:  I know you touched on this in your last response, but can you comment on any 
other factors that can influence someone?s perceptions of ARV?s? 
R:  I definitely think that political is an issue.  I think that ???again if I can come 
onto my mental health issues.  I do think that people?s will to live is an important 
one and belief, in the face of adverse circumstances; that they can survive.  I think 
that another issue is that sometimes, people are not all that ill at a time when they 
should start ART and that?s obviously a debatable issue. But I think that when 
you? I think maybe I?m answering the last question rather than this one, but 
when you are living in poverty you have got many other concerns and you are not 
sick, you are going to be concerned about the things about keeping alive, rather 
than those things might affect you in the future and they may not. So it looks like 
an immediacy issue linked to poverty.  This is probably an issue of what I think. 
There is an immediacy issue, and then of course the side effects issue and the 
 178 
difficulties with maintaining large regiments of medication.  I think also that 
because people become ill with other diseases and so on, and let me push my 
mental health issues or psychiatric issues, but I was at a conference recently 
where someone from America who said that their son was on something like a 
110 medications a day, you know because you have to take antiretrovirals 3 times 
a day, and I don?t know many of those there are, but maybe 3 of each and then 
this person was epileptic and they might have had TB or whatever and then one 
thing after another, after another. And eventually this person said, ?No thanks? 
and just and one day take 110 and the next day taking nothing.  And I think it is 
very understandable by somebody doesn?t want their lives to be dominated by 
their medication, and I think that when you are on ART life has to stop and 
becoming dominated by it, and  you?ve got to have a real will to survive in order 
to do that.  I mean most of us are pretty poor in taking medication over a short 
period, and we?ve seen the difficulties with things like TB medication and DOTS 
strategies and all that kind of stuff, which do help but to try and get somebody to 
take lots of medications with side effects for extended periods of time, is difficult, 
but maybe if one?s looking for a personality trait, maybe it is perseverance.  If you 
basically have to just keep on hanging in there and say ?This is keeping me alive, 
and therefore I have to carry on taking it!? But it does dominate your life and if 
you travel you have to remember to have sufficient quantities.  You got to have 
good relations with health systems all over the place in order to get your 
medications that you need and there are quite migrant patterns, where people do 
move around a lot, and you have to have your medication, or you have to be able 
to expose yourself also possibly to more than one health person, and if there is 
stigma, and there is stigma around, perhaps you do not want another person, I am 
HIV and how they are going to respond to you, and I think that the whole stigma 
and discrimination actually do make a difference.  If you are taking medicines, 
and you may have disclosed to people at home.  You may say that?s fine and then 
you go out, and have lunch somewhere and you got to take your medication, so 
every time you show your pills, you are saying I am HIV positive.  And that?s  
fine if you are out and you do not mind, but most people do mind who knows, and 
 179 
given the stigma probably, correctly so.  So it is a major exposure to take 
medication. Then there is the whole physical side effects, it is called 
lipodystrophy, where if you are on ART and you have been for a while, if I see 
you I?ll know. So, do you want me to know?  I am thinking of Australia and in the 
States where especially where in gay clubs and things, people would comment, on 
ART.  Those people, I will not make a move on tonight, and you can actually see, 
you can pick them up, through extended fats in different parts of the body, so you 
immediately become discriminated against because you are on ART, and the 
people don?t want to get involved with you and that there might be another reason 
why you do not get on, because say I get into a relationship with you and I don?t 
necessary want you to know that I am positive at the beginning of the 
relationship.  I do insist that we use a condom because thats the way I handle it, 
but I am very worried because if you know, I?m going to stop the relationship, but 
if we spend a day together, you are going to know.  So I think there are so many 
issues, which determine whether people are going to take it properly or not.  
 
I:  Do you feel that the way society perceives HIV affects whether individual is 
compliant or not, and to what extent? 
R:  All the reasons that I have been talking about.  I think if there was no 
discrimination and no stigma, then it would be much easier for people to be open 
and to take the medication, but it is not and people do not want everybody to 
know that they are positive.  With all the work that I have been doing, the whole 
issue of relationships have come up very, very strongly in interviews with positive 
people. That getting hold of a person is not easy at all, if you positive.  Partly 
because they don?t want to get involved with you but partly they and partly 
because you don?t want to infect other people, and even if you do take protection, 
obviously your risks are higher and so on.  If I like you, especially if I like you, I 
don?t want to infect you.  And it creates difficulties in ongoing relationships, and 
it creates severe problems in getting involved in a relationship.  So a lot of people 
that we interviewed said, ?I only want to ge t involved with somebody else who is 
positive?, and it is a very limited thing.  And then it also has problems of course.  
 180 
You still have to take precaution as you can still infect each other etc. Sorry, what 
was your question?  
 
I:  Whether society?s perceptions affect whether the individual is compliant? 
R:  I think it largely linked to openness about it, and to the stigma and discrimination.  
 
I:  And, if you have to look at an individual?s environment.  Do you think their 
actual environment is going to play a role in compliance? 
R:  Yes.  Environment is also linked to disclosure. In this house, perhaps I can hide 
my medication somewhere and if I live in a very small little shack somewhere, 
there is no way I am going to hide it from people.  Yes certainly I think it would.  
But if you are talking about environment, it may be a hospital, maybe you are 
talking about a boarding school.  People live in very different environments and if 
you don?t want other people to know about it, of course you are going to find a 
way. And I believe the better word is ?adherent? it rather than ?compliant? it.  
Compliant is kind of associated to a doctor?s instruction rather than a choice.  
 
I:  What do you think can be done to help patients take their medication properly? 
R:  I suppose there is the usual things like the cool boxes and things like that.  I think 
they have done very well with chronic medications, and so on, there is things like 
alarms that people have on their watches and things where at certain time it rings, 
which reminds them to take their medication.  There is of course getting others to 
help you to remember, remind you at certain times, and that becomes your joint 
responsibility.  Putting a lot of pressure on others, but I suppose if it is your loved 
one you probably will adhere to that.  But I don?t want to talk about things you 
might not get from other people.  When that is one thing in particular is the 
finding and certainly my strong belief that if you are not psychologically well or 
psychiatrically well, it is going to have quite a bearing on whether you do 
continue to adhere to your medication or not.  And the research seems to suggest 
that the people that are depressed, don?t really care all that much about their 
futures and so die or not die, well, if I have to bounce that against side effects, 
 181 
against disclosure, against all the other negative things about being on ART, I 
would rather not. And part of what we?ve have been doing at the WHO, is trying 
to look at programmes to help people not just to go through adherence counselling 
but rather have mental health counselling, so that you?re not just getting your 
ducks in a row, and I have seen a lot of these things in the WHO manuals, well if 
you haven?t seen it, you should get it, but you properly have seen.  There?s about 
20 other things that people have to know about to be adherent  but  when it come 
to get to peoples psychological difficulties, it don?t think that may or may not be 
absolutely directly linked to being HIV positive.  And why I say they may or may 
not be directly linked to, because mental problems are both a risk factor to 
becoming HIV positive and the consequence of being positive. So, lets say you 
are depressed to start with, your behaviour would probably be more risky or you 
got a substance abuse problem.  So you don?t engage in protective sex, they way 
you would if you were in a better mental health status. If you are suffering from 
mania, you are not going to worry about using a condom.  You might also be less 
slightly to be able to say, ?no?, because you don?t have the same social skills.  If 
you have mental health problems, so people are risk at risk, but then also, once 
you become positive that may well lead to depression, to anxiety, to dementive 
states and so on.  As a consequence, then, one?s mental health goes down.  You 
might have been at poor mental health to start or as a consequence. So, you got a 
high percentage of people who are HIV mental health problems as well.  We are 
doing a study at the moment and that there has been some small studies.  It is not 
unrealistic to say that the probably half people with HIV also have mental health 
problems.  And most of those are not being dealt with, either through medication 
or counselling or psychotherapy and the research has also shown that those people 
with poor mental health are less likely to adhere to medication. The research is 
there, so you have higher numbers more likely to not adhere, so you got to deal 
with the mental health problems in order to try and help with improving 
adherence.  All the mental health problems, because people need help with the 
mental health problems.  A good secondary outcome of that probably is that you 
are going to improve adherence if you do that.  It is also you know like you have 
 182 
to treat opportunistic infections impacts, so you also got to treat the mental health 
impacts, but in doing that what should get better adherence and the research is not 
yet there to say that treating the mental health problems is going increase the 
adherence.  At the moment I am still trying to raise the money to do that kind of 
study.  There is some evidence from the USA that it would improve adherence, 
but we?ve got evidence from developing countries, where your rates are so much 
higher and where your complications are possibly more linked to some of the 
stuff we talked about earlier and to what extent these other things will impact on 
your adherence relative to your poor mental status.  It?s worth finding out.  
 
I:  What role do you see yourself and the organisations that you are working for, how 
do you see yourself helping people take their medication? 
R:  Probably at our point of view, we are now, we are adding a mental health section 
to be training of people in how to deal with positive people and how to give 
people ART.  And we are just testing our materials at the moment.  Most of the 
roll out of ART internationally is taking place through something called the 
Integrative Management Of Adult And Adolescent Illnesses I don?t know if you 
know that approach.  That?s what the WHO are using for training people on how 
to deal with ART.  It is quite a comprehensive health approach and it is not just 
concentrating on the HIV. What are the person?s complaints and how does one 
deal with them. And through that process you pick up the HIV and it links into 
pre and post test counselling and being integrated into a primary healthcare 
system. But that is the main way ART is going to be given out internationally.  
That?s the 3 x 5 objective.  And we now are including a mental health component 
in that, so now we are saying what are your problems, and they will give them 
you, and you will ask about their mental health or their mental well being. And, if 
they are suffering from depression or anxiety or whatever, you will treat them.  
Some people will get treated with medication and some people give them 
individual counselling, other people you put in groups. What we have done is 
develop materials for the integrated primary care level mental health intervention 
for basic counselling and then we got to the second level with more 
 183 
psychotherapeutic interventions, different models and more interpersonal therapy 
and motivational interviewing, bereavement counselling and things like that.  
You?ve got a second level psychiatric module and so we really saying, well, if it 
is true more that people with HIV have mental health problems and I?ve got very 
little doubt if that is true. And I?ve got no doubt that being positive is a damn 
difficult thing especially in dealing with relationships. So I think that merely 
looking at adherence and adherence strategies limiting for a certain proportion of 
people and where I hope my work would come in is that for those who need 
something else, health to adhere to that. So from that point of view, I?m hoping 
that my work would be more than sitting at a computer developing materials.  
From the HSRC side, I think we still need the evidence that people with HIV are 
more likely to have mental health problems and that study I hope will help to 
establish that. But in that study what we are also doing, is looking at the 
directionality about what comes first ? the mental health problem or the HIV.  We 
are also looking at things that people say, support them when dealing with their 
lives, and what makes things worse for them, so that will also give us some 
insights into what people need, which we will then have a social environmental 
level as well as at a personal level.  I am also looking as I said for money to do a 
case control trial where we give some people mental health interventio ns and not 
others, and see whether that actually improves adherence or not.  And then I am 
also just getting involved in a study where we are looking at HIV status amongst 
people with severe mental illness because they are in a whole other group. Again, 
in the USA people with severe mental illness are 20 times more likely to be HIV 
positive than your general population.  If we try to convert to it here we well have 
a 100%.  I don?t think it is likely but it is likely that they are a high risk group.  
They have particular kinds of problems with adherence and so on.  Now some 
people argue that because many people with a serious mental illness are used to 
taking chronic medication that getting them to take some additional medication 
will not be that difficult because they understand why, and they have seen the 
benefits of it and so on.  Other people say that people with mental illness are just 
difficult to keep on chronic medication because of the illness itself and you?re 
 184 
probably going to have low levels of adherence.  Now a way of counteracting that 
is to develop programmes to help them specifically to adhere.  And, they might be 
different counter programs from the general population, far more closely 
supervised and more focussed training on reasons why and how to do it. So that is 
a group who probably does have high levels of HIV and they what might be 
called the sentinal group who you can identify as high risk and you then need both 
good proficient programmes for them. Prevention primary and secondary 
prevention and focussed adherence programmes as well. So that is another area 
where hopefully my work will make some difference.  
 
I:  Do you see any other professionals in playing the role in improving adherence?  
R:  Yes everybody.  Doctors, lawyers, business executives and they all live in little 
boxes. I am not just being facetious.  I think certainly all professionals who deal 
directly with people on ART have to play a role, Doctors, Nurses, Nurse aids, 
HIV aids, community health workers.  I don?t know how widely you wanted to 
define professionals.  When I say lawyers, I think that fighting some of the good 
fights around stigma and discrimination will all make a difference to adherence in 
the longer term.  You pick up a fight of discrimination, people are being 
discriminated against and the lawyers are not taking up the cases.  They need to 
be taking up the cases, because while such discrimination goes on, it is going to 
be so much more difficult for people to adhere. And the more cases they pick up, 
the more it is going to help, with the discrimination, people are going to be more 
scared.  This is going to help to normalise the situation, so lawyers you can?t say 
what do lawyers have to do with it, they have.  Business executives, they?ve got to 
start normalising the practice of people taking ART in the work places. They got 
to have resources available, they got to have mechanisms to give people ART?s.  
They?ve got to get involved and possibly, the more people start taking it, and the 
more it becomes normalised and a norm, the more adherent people become as 
well.  When you?re the exception, it?s more difficult where if 20% ? 30% of the 
people in the workplace are doing it, you just do it too and maybe help each other. 
 185 
It is just, ?Lets take our the medication now?.  I think it really needs a concerted 
effort. And the politicians.  
 
I:  What did you feel about introductions of ARV?s to the health care sector? 
R:  What did I feel about it?  I must say, initially, I was somewhat sceptical.  At first I 
think most of us didn?t know if it was going to work or not.  Whether one would 
just be giving people difficulties for very little reward.  But I think I was also one 
of the people out of department of health, and I am thinking quite a lot as well, I 
was sceptical about the ability of health systems to back up a major roll out 
programme.  I think you do need well trained people, you do need good 
laboratory back up, you do need good monitoring, you need availability of your 
medication all the time, and so on and so on.  And I think without those things, 
you may well be making things worse. Now I am sure you would have people 
telling you both that unless you have your 95% adherence you are going to get 
your resistance strains and you are going to get people who tell you a lo t of junk, 
and I am sure you had both already, but certainly there is a risk that if you don?t 
get your adherence and you can make things worse. That your intervention is not 
just useless, it becomes worse than useless.  And certainly I think that I am and I 
was worried about those kind of things. I don?t think that those are smarties one?s 
playing around with. And I do think that one needs assistance in place.  And to 
know more perhaps about what does help people to adhere, before you start 
giving them these medication, you?ve got to have proper good support 
programmes, and I think that your research is probably quite important in helping 
to understand that what is it that the health system needs to improve adherence.  I 
mean it might sound like its in terms about what I?ve said about what makes a 
difference to what other people saying this is what you need for adherence, but we 
need to be more systematic about it, and we need our systems to be well 
functional. I don?t know if you ever asked the question, where I can put it in.  In 
to say you need well functioning systems to get better adherence, and one of the 
dynamics.  Do you have a question as such?  
 
 186 
I:  I asked you what did you think can improve adherence. 
R:  Well certainly, I would put good health systems into that category.  And good 
training of health workers, good training of family members, and good training of 
patients.  But you certainly need the back up and you need to know what you are 
doing and telling somebody you are going to be on this sort of life, is not going to 
keep them on for life.  The other things that I am not sure if I should have said it 
when people feel well, then what keeps them on medication? Very little. My 
experience with psychiatric patients, I mean that is far longer, it shows that when 
people are doing well, psychiatrically, they stop their medication, maybe until 
they relax, and they go on again and then maybe after the 5th time after relaxing, 
they realise that they?ve got to stay on.  It is just human nature.  When I was 
feeling well, and you really need to have an understanding and conception of this 
virus, and what the cause of doing to control it. And I think it is quite a highly 
intellectual conceptualisation especially for people who have very, very different 
conceptions about what causes the illness.  And then you worry because it is 
going to be there forever.  Never heard of that before, the illness is caused by 
witchcraft. 
 
I:  You have spoken about quite a few difference interventions.  How do you see the 
interventions being implemented?  Do you think have to be implemented at 
community level or individual level to be effective? 
R:  I don?t think it is either or.  Because I think it is both.  I think that changing social 
attitudes and perceptions and norms has to happen at a social and community 
level.  I think that societies can change what is normal, or normative and they do 
but it takes a long time, so what is it that makes that change and how long does it 
take. Well certainly I think that you do need public information, public input, 
media exposure etc etc.  But I also think that changes and it influences how 
individuals behaved, so that changes through individuals changing, so I never 
believe that individuals affect society, or society affects individuals.  I always 
think it happens both ways and so I think that when people become personally 
educated, personally start changing their behaviours, then that becomes part of the 
 187 
social norm. And then that becomes the social norm.  But it is not the only way it 
becomes a social norm because they might also have needed some external inputs, 
which might have happened on an individual level or a social level for them to get 
to the point where they start behaving in a way that helps societies to change and 
for that thing to become a normative.  I don?t think it is an either or situation.  We 
need multiple attacks.  
 
I:  Thank you very, very much for doing this interview with me.