The lived experiences of caregivers: psychological and social implications of caring for 

patients with Bipolar Disorder 

 

Research Report 

Submitted in partial fulfilment of the requirements for 

the Degree of Master of Arts in Social and Psychological Research (PSYC7022) 

in the Department of Psychology, School of Human and Community Development, Faculty 

of Humanities, at the University of the Witwatersrand, Johannesburg. 

 

By  

Mikaela Diane Nicolau 

Student Number: 1130811 

 

Supervised by Dr Mambwe Kasese-Hara 

 

Submitted on: 15 March 2023 

 

Word Count: 21 314 

 

  



THE LIVED EXPERIENCES OF CAREGIVERS  ii 

Masters in Social and Psychological Research – Research Report Declaration 

 
Surname: Nicolau 
 
First name/s:  Mikaela Diane 
 
Student no.:  1130811 
 
Supervisor:   Dr Mambwe Kasese-Hara 
 
Title:   The lived experiences of caregivers: psychological and social implications of 
caring for patients with Bipolar Disorder 
 
 
Declaration 
 
I, Mikaela Diane Nicolau, know and accept that plagiarism (i.e., to use another’s work and to 
pretend that it is one’s own) is wrong. Consequently, I declare: 
 

• The research report is my own work.  
• I understand what plagiarism is, and the importance of clearly and appropriately 

acknowledging my sources.  
• I understand that questions about plagiarism can arise in any piece of work I submit, 

regardless of whether that work is to be formally assessed or not. 
• I understand that a proper paraphrase or summary of ideas/ content from a particular 

source should be written in my own words with my own sentence structure, and be 
accompanied by an appropriate reference. 

• I have correctly acknowledged all direct quotations and paraphrased ideas/ content by 
way of appropriate, APA-style in-text references.  

• I have provided a complete, alphabetized reference list, as required by the APA 
method of referencing. 

• I understand that anti-plagiarism software (e.g. Turnitin) is a useful resource, but that 
such software does not provide definitive proof that a document is free of plagiarism. 

• I have not allowed, and will not allow, anyone to copy my work with the intention of 
passing it off as his or her own work. 

• I am aware of and familiar with the University of the Witwatersrand’s policy on 
plagiarism. 

• I understand that the University of the Witwatersrand may take disciplinary action 
against me if there is a belief that this is not my own unaided work, or that I failed to 
acknowledge the source of the ideas or words in my writing. 

 
 
 
Signed:   
 
Date:  15/03/2023 
  



THE LIVED EXPERIENCES OF CAREGIVERS  iii 

Acknowledgements 

I would like to thank my parents, Debbie and Zieg Bokelmann, and Costa and Sharon Nicolau, 

as well as my grandparents, Dave and Molly Gradidge, for their unwavering support 

throughout this journey. Without you, I would not have made it to this point. Thank you for 

allowing me to follow my dreams.  

 

Thank you to the rest of my family, who have been incredibly understanding when I have 

sacrificed family time to finish the work I present below. Thank you all for standing by my 

side and for believing in me, even when I had lost faith in myself.  

 

To my best friend, Jessica Kallenbach, thank you for being my pillar of strength over the past 

two years. Thank you for being my shoulder to cry on, my proof-reader, and my motivator. I 

am so grateful to have met you.  

 

Thank you to my mentor, Winston Schoeman, for all your support. I am incredibly grateful for 

all you have done for me. To my supervisor, Mambwe Kasese-Hara, thank you for being patient 

with me and for all your insight.  

 

I wish to thank my gatekeepers for your help in finding participants for this study.  

 

To the wonderful caregivers who took the time to talk to me: thank you. I hope I have done 

your stories justice. Being a caregiver for a patient with Bipolar Disorder is a challenging task, 

and I thank you all for sharing your journey with me in such an open way. Without you, this 

piece of work would be meaningless.  

  



THE LIVED EXPERIENCES OF CAREGIVERS  iv 

Abstract 

Due to the nature of the illness, bipolar disorder (BD) has detrimental effects on the 

diagnosed patients as well as their caregivers (Hajda et al., 2016). Vast amounts of research 

have been published on the impact and implications experienced by caregivers of mentally ill 

patients however, a majority of research assessing the psychological and socio-economic status 

of the caregivers has been quantitative in nature (Sharif et al., 2020). This study sought to 

understand the psychological and social implications of caring for a patient with BD, with a 

specific focus on caregivers in the Gauteng region. The middle-class was chosen as Ayalew et 

al. (2019) found that the higher the caregiver’s income, the fewer implications they experienced 

as a caregiver. A phenomenological framework was used to conduct this study. The qualitative 

method of data collection was face-to-face, in-depth interviews with six participants (two 

males, four females), who were selected using purposive sampling. The interviews were 

transcribed verbatim, and the data analysed by means of Interpretative Phenomenological 

Analysis.  

For the caregivers in the current study, managing the patient’s unpredictable behaviour 

and dealing with the varying symptoms of the disorder presented a challenge. They described 

the caregiving role as an emotional rollercoaster, signifying the chaotic, up-and-down nature 

of the disorder. Being a mother-caregiver led to shared experiences among the caregivers, with 

similar implications being expressed. Being a wife, however, presented significantly greater 

caregiver implications. The male caregivers have adapted to their roles better than the females. 

The theme of financial implications was interesting in this study, as these implications varied 

among the respondents. The researcher found it interesting that five of the participants spoke 

about neglecting their needs without any probing, yet they also acknowledged the importance 

of self-care and being aware of their mental state. The participants in this study expressed the 

need for support groups, which are lacking in the country. Whilst the findings of this study 



THE LIVED EXPERIENCES OF CAREGIVERS  v 

were in line with much published research, the researcher notes that there is a scarcity of 

literature covering some of the themes and subthemes presented, and therefore further research 

should be conducted. This research was approved by the Ethics Committee (Protocol number: 

MASPR/21/07). 

 

Keywords: caregiver, psychological, social, implications, bipolar disorder, Gauteng, middle-

class 

 

  



THE LIVED EXPERIENCES OF CAREGIVERS  vi 

Table of Contents 

Masters in Social and Psychological Research – Research Report Declaration .................. ii 

Acknowledgements ........................................................................................................... iii 

Abstract ............................................................................................................................. iv 

Definitions of Concepts ...................................................................................................... x 

Caregiver ....................................................................................................................... x 

Implications ................................................................................................................... x 

Bipolar Disorder ........................................................................................................... xi 

Chapter One: Introduction and Background of the Study .................................................. 1 

1.1. Introduction ..................................................................................................... 1 

1.2. Problem Statement and Research Rationale .................................................... 2 

1.3. Research Aim ................................................................................................... 3 

1.4. Research Question ........................................................................................... 3 

1.5. Significance of the Study .................................................................................. 4 

1.6. Overview of Research Study ............................................................................ 4 

Chapter Two: Literature Review and Theoretical Framework ............................................ 6 

2.1. Introduction ..................................................................................................... 6 

2.2. Psychological Implications ............................................................................... 6 

2.2.1. Depression ........................................................................................................................ 7 

2.2.2. Anxiety ............................................................................................................................. 8 

2.2.3. Psychological Distress ...................................................................................................... 8 

2.2.4. Caregiver Support ............................................................................................................. 9 

2.3. Social Implications ......................................................................................... 10 



THE LIVED EXPERIENCES OF CAREGIVERS  vii 

2.3.1. Stigma ............................................................................................................................ 11 

2.3.2. Financial Implications .................................................................................................... 13 

2.3.3. Family Functioning ........................................................................................................ 14 

2.4. The Relationship Between the Caregiver and the Patient .............................. 15 

2.4.1. The Parent-Child Relationship ....................................................................................... 16 

2.4.2. Marital Relationships ..................................................................................................... 17 

2.5. The Changing Role of the Caregiver .............................................................. 19 

2.6. Theoretical Framework ................................................................................. 21 

2.6.1. Coping Strategies Used by Caregivers ........................................................................... 23 

2.7. Conclusion ...................................................................................................... 25 

Chapter Three: Methods and Ethical Considerations ....................................................... 26 

3.1. Research Design ............................................................................................. 26 

3.1.1. Interpretive Paradigm ..................................................................................................... 26 

3.1.2. Interpretative Phenomenological Analysis ..................................................................... 27 

3.2. Participants .................................................................................................... 27 

3.3. Sampling and Data Collection Procedure ...................................................... 28 

3.4. Data Collection Tools ..................................................................................... 29 

3.5. Data Analysis ................................................................................................. 29 

3.6. Strategies to Ensure Research Worthiness .................................................... 30 

3.7. Role of the IPA Researcher ............................................................................ 31 

3.8. Ethical Considerations ................................................................................... 32 

Chapter Four: Findings and Discussion .......................................................................... 33 

4.1. Introduction ................................................................................................... 33 



THE LIVED EXPERIENCES OF CAREGIVERS  viii 

4.2. Participant Demographics ............................................................................. 33 

4.3. Emerging Themes and Subthemes ................................................................. 34 

4.3.1. Theme One: The Ups-and-Downs of Caregiving ........................................................... 35 

4.3.2. Theme Two: Support Systems ........................................................................................ 44 

4.3.3. Theme Three: Coping With the Patient .......................................................................... 47 

4.3.4. Theme Four: Social Implications ................................................................................... 52 

4.3.5. Theme Five: The Caregiver-Patient Relationship .......................................................... 55 

4.3.6. Theme Six: Stigma ......................................................................................................... 59 

4.3.7. Theme Seven: Financial Implications ............................................................................ 61 

4.3.8. Theme Eight: Caregiver Needs ....................................................................................... 64 

4.4. Conclusion ...................................................................................................... 66 

Chapter Five: Conclusion, Limitations, and Recommendations ....................................... 68 

5.1. Introduction ................................................................................................... 68 

5.2. Limitations ..................................................................................................... 68 

5.3. Recommendations and Implications for Future Research ............................. 69 

5.4. Conclusion ...................................................................................................... 70 

References ....................................................................................................................... 75 

Appendices ...................................................................................................................... 88 

7.1. Appendix A: Participant Information Sheet .................................................. 88 

7.2. Appendix B: Participant Consent Form ........................................................ 90 

7.3. Appendix C: Gatekeeper Permission Letter – Psychiatrist/Psychologist ....... 91 

7.4. Appendix D: Permission Letter – Research Site (if needed) .......................... 93 

7.5. Appendix E: Permission Letter – Research Site ............................................ 95 



THE LIVED EXPERIENCES OF CAREGIVERS  ix 

7.6. Appendix F: Interview Schedule .................................................................... 96 

7.7. Appendix G: Permission Letter – Winston Schoeman ................................... 97 

7.8. Appendix H: Permission Letter – Dr M Lombard ......................................... 98 

7.9. Appendix I: Permission Letter – Dr CE Schüler ........................................... 99 

 



THE LIVED EXPERIENCES OF CAREGIVERS  x 

Definitions of Concepts 

In order to provide context for this research project, a brief description and 

conceptualisation of the main concepts will be presented.  

 

Caregiver 

The term ‘caregiver’ is assigned to an individual who cares for another, defining the 

role of the individual and, to some extent, creating a new identity for them (Vargas-Huicochea 

et al., 2018).  In this study, the caregiver is the individual who is primarily involved in caring 

for the patient with bipolar disorder. For the purpose of this research, it is proposed that 

caregivers are primarily family members. This is due to the fact that literature has shown that 

since the South African Mental Health Act of 2002 advocated for the deinstitutionalisation of 

patients with mental illness, these patients ended up in the care of their family members 

(Lekoadi et al., 2019; Mokwena & Ngoveni, 2020; Ntsayagae et al., 2019; September & 

Beytell, 2019). 

 

Implications 

The researcher opted to use the term ‘implication’ instead of ‘burden’ in this study. The 

researcher recognised that exploring psychological and social implications would be similar to 

exploring subjective and objective burden, as first defined by Hoenig and Hamilton in 1966, 

however the term ‘burden’ was rejected by the researcher for the purpose of this study. In 1996, 

Szmukler et al. advocated for the rejection of ‘burden’ when referring to the experience of 

caring for mentally ill patients.  The researchers claimed that it was not possible to 

operationalise the term and further criticised the underlying assumptions that caregiving is only 

a negative experience for the carers (Szmukler et al., 1996). In most current literature published 

about caregivers of bipolar disorder patients, the researcher noted that burden seemed to be the 



THE LIVED EXPERIENCES OF CAREGIVERS  xi 

predominant term used. As such, the intention of the researcher is to highlight that there may 

be other ways to understand the experience of caregiving.  

 

Bipolar Disorder 

Bipolar disorder (BD) is characterised by fluctuating periods of mania (or hypomania 

in some cases) and depressive episodes (Burke, 2015). The Diagnostic and Statistical Manual 

of Mental Disorders fifth edition (DSM-5) (American Psychiatric Association [APA], 2013) 

differentiates between seven subtypes of BD, however the two most frequently seen and 

diagnosed are bipolar I disorder and bipolar II disorder. To be diagnosed with bipolar I disorder, 

the patient must meet the specified criteria for a manic episode. These patients will almost 

always experience hypomanic or major depressive episodes before or after their manic episode 

(Burke, 2015). A bipolar II disorder diagnosis requires the presence of a hypomanic episode 

(current or past) as well as a major depressive episode (current or past) (APA, 2013; Burke, 

2015). For the purpose of this study, the two main subtypes of BD will be focused on. 

 

 



THE LIVED EXPERIENCES OF CAREGIVERS  1 

 Chapter One: Introduction and Background of the Study 

1.1. Introduction 

The World Health Organisation (WHO) (2019) has found that the implications of 

mental disorders is continuously growing around the world. Living with a mental disorder 

significantly impacts the health, socio-economic status, and human rights of those with mental 

disorders (WHO, 2019). The WHO (2019) makes reference to many mental disorders, of which 

bipolar disorder (BD) is one. Determining the exact prevalence of BD in South Africa is 

challenging as there remains a scarcity of literature and recently updated statistics. The 2004 

South African Stress and Health (SASH) study conducted by Herman et al. (2009) is the main 

source of data regarding the prevalence of mental health disorders in South Africa. The 

researchers found that the lifetime prevalence of mood disorders in South Africa was 9,8%. 

However, the researchers made use of the DSM-IV, which classified both major depressive 

disorder and BD under the category of mood disorders, therefore not allowing for an accurate 

representation of the prevalence of BD alone (Herman et al., 2009).  

Being diagnosed with a mental disorder causes clinically significant impairment in 

several domains of the patient’s life (APA, 2013). However, much research has found that it is 

not only the patient who is affected by their illness but also those living with them, such as 

their family caregiver (Ntsayagae et al., 2019; Sharif et al., 2020; Sharma et al., 2016) and even 

the community in which the patient lives (Fekadu et al., 2019). Just as with the other mental 

illnesses, BD affects not only the patient but those living with them too (Lekoadi et al., 2019).  

Research has shown that 90% of BD patients have multiple episodes during their 

lifetime (Nolen-Hoeksema & Marroquín, 2017). Every time a patient relapses (returns to a 

manic/depressive state), the family equilibrium becomes unbalanced, and they have to adjust 

to the patient’s current state (Reinares et al., 2016). Due to the unpredictable nature of BD, 

caregivers tend to neglect their needs, as well as the needs of the rest of their family (Reinares 



THE LIVED EXPERIENCES OF CAREGIVERS  2 

et al., 2016). It has been shown that being a caregiver for a BD patient has a negative impact 

on most, if not all, domains of the caregiver’s life such as social and leisure activities (Yadav 

et al., 2018), relationships (van den Heuvel et al., 2018), mental health (Baruch et al., 2018), 

family environments (de Souza et al., 2016), marriage (Grover, Aneja et al., 2019), and 

physical heath (Vargas-Huicochea et al., 2018). Being a caregiver is often not chosen, nor is it 

planned for, leaving the caregiver very little time to adjust to their new role. Furthermore, the 

role of the caregiver is not fixed; the course of the patient’s disorder determines the role of the 

caregiver (Kızılırmak & Küçük, 2016).  

 

1.2. Problem Statement and Research Rationale 

Due to the nature of the illness, BD has detrimental effects on the diagnosed patients 

and their caregivers (Hajda et al., 2016). Vast amounts of research have been published on the 

impact and implications experienced by caregivers of mentally ill patients however, a majority 

of research assessing the psychological and socio-economic status of the caregivers has been 

quantitative in nature (Sharif et al., 2020).  

Research has shown that how the caregiver experiences the caregiving process depends 

largely on their socio-demographic profile (Dadson et al., 2018; Grover, Avasthi et al., 2017; 

Mulud & McCarthy, 2017). In essence, the experience of psychological and social implications 

when caring for a patient with BD is determined by the caregiver’s age, gender, ethnicity, social 

support (or lack thereof), religious/cultural affiliation, and the severity of the patient’s disorder 

(Shah et al., 2010).  

To the researcher’s knowledge, there is a scarcity of research focused on caregivers of 

BD patients in South Africa, particularly in Gauteng. South African-based studies come from 

disciplines such as social work (van der Walt & Carbonatto, 2019) and nursing (Lekoadi et al., 

2019). Furthermore, the South African literature published in this field of study focuses on 



THE LIVED EXPERIENCES OF CAREGIVERS  3 

caregivers in rural settings caring for patients who utilise government resources (Mokwena & 

Ngoveni, 2020; Ntsayagae et al., 2019; September & Beytell, 2019).  

Based on the above, the researcher identified a gap in the literature. As such, this study 

sought to understand the psychological and social implications of caring for a patient with BD, 

specifically focusing on caregivers in the Gauteng region. Furthermore, the research was 

conducted on middle-class, urban, caregivers by recruiting participants through gatekeepers 

(specialist psychiatrists and psychologists) in private practice. The middle-class was chosen as 

Ayalew et al. (2019) found that the higher the caregiver’s income, the fewer implications they 

experience as a caregiver. Utilising the interpretative phenomenological analysis approach in 

this qualitative study, the researcher was able to gain an in-depth understanding of the lived 

experiences of these caregivers. Caregivers in urban settings possess different socio-

demographic variables than those caregivers in rural settings, and hence, it is important to allow 

these participants to voice their experience of caregiving. 

 

1.3. Research Aim 

The aim of this study was to explore the lived experiences of caregivers regarding the 

psychological and social implications of caring for patients with bipolar disorder, particularly 

in Gauteng, South Africa.  

 

1.4. Research Question 

How do caregivers experience the psychological and social implications of caring for 

patients with bipolar disorder? 

 



THE LIVED EXPERIENCES OF CAREGIVERS  4 

1.5. Significance of the Study 

Due to the lack of qualitative research on the lived experiences of middle-class 

caregivers of BD patients in the Gauteng region, there have not been many opportunities to 

understand the implications of caregiving, from their perspective. The intention of the 

researcher is to add to the existing literature on caregivers while presenting findings from a 

population who, to the researcher’s current knowledge, have not yet been studied. Furthermore, 

by using the term ‘implication’ instead of ‘burden’, it is the intention of the researcher to 

present a different perspective on the experience of caregiving. As Vargas-Huicochea et al. 

(2018) so rightfully conclude, it is important to recognise that caregivers are “individuals with 

their own experiences and feelings, with a socio-cultural baggage that permeates the meaning 

they assign to life and to the illness as a life event” (p. 214). 

 

1.6. Overview of Research Study 

Chapter One - Introduction and Background of the Study 

This chapter introduces the current study and presents the aim of the dissertation. 

Current gaps in literature and a justification for conducting the research are presented.  The 

significance of the study is highlighted. 

Chapter Two - Literature Review and Theoretical Framework 

The literature review provides insight into the phenomena being investigated and how 

the topics of the study are related to each other. The theoretical framework of the study is 

delved into.  

Chapter Three - Methods and Ethical Considerations 

Chapter three presents the paradigm of the dissertation, the research design, information 

on participants, an explanation and justification of the data collection method and procedure, a 

description on the data analysis method used, and ethical considerations.  



THE LIVED EXPERIENCES OF CAREGIVERS  5 

Chapter Four - Findings and Discussion  

This chapter includes the presentation of the findings from the data collected during the 

interview process. The findings are based on codes that emerged when the researcher 

conducted interpretative phenomenological analysis, and excerpts from the transcribed 

interviews are presented. The findings of the study are then supported or contradicted by 

research presented in the literature review. In order to discuss the findings, the researcher 

presents a critical reflection.  

Chapter Five - Conclusion, Limitations, and Recommendations  

Chapter five presents the researcher’s concluding remarks, the limitations of the current 

study, and recommendations for possible areas to study in the future. 

  



THE LIVED EXPERIENCES OF CAREGIVERS  6 

 Chapter Two: Literature Review and Theoretical Framework 

2.1. Introduction 

Mental illness has been found to cause significant psychological and social problems 

in the lives of the patient’s family members (Iseselo et al., 2016). Being the caregiver of a  

patient with bipolar disorder (BD) is an important, yet challenging task (Vargas-Huicochea et 

al., 2018). While it has been found that caregiving does have some rewards, caring for a person 

with a mental illness has profound psychological, social, physical, and economic implications 

for the well-being of the caregiver (Ntsayagae et al., 2019; Sharif et al., 2020). These 

implications faced by the caregiver have been found to “disrupt their biopsychosocial integrity” 

(Sharif et al., 2020, para. 1) making for a very stressful experience (Ntsayagae et al., 2019; 

Sharif et al., 2020; Sharma et al., 2016). The purpose of this literature review is to cover various 

concepts that have been found to be related to the psychological and social implications of 

being a caregiver. The theoretical framework underpinning this study will be presented. 

 

2.2. Psychological Implications 

Fekadu et al. (2019) found that one’s psychological well-being is significantly impacted 

when caring for a person with a mental illness. When considering the psychological 

implications of caring for BD patients, researchers found the following areas of concern: a 

decreased quality of life (von Kardorff et al., 2016); symptoms of distress, poor health, chronic 

medical conditions, increased use of antidepressants and tranquilisers (Yadav et al., 2018); 

feelings of being unwanted, burnout, uncertainty (Akbari et al., 2018); feelings of fear, 

helplessness, frustration, anguish (Morrison & Stomski, 2017; Ntsayagae et al., 2019); and 

being stigmatised by the wider community (Iseselo et al., 2016).  

Caregiving is an exhausting process for the caregiver, and providing long-term care for 

the patient has been found to cause significant stress for the caregiver (Lekoadi et al., 2019). 



THE LIVED EXPERIENCES OF CAREGIVERS  7 

BD patients face many behavioural problems placing added stress on South African caregivers, 

which has significant implications for their mental health (Lekoadi et al., 2019). Similar 

findings were reported by Kızılırmak and Küçük (2016), who found that the challenges faced 

by caregivers in Istanbul put them at a high risk of developing mental disorders such as anxiety 

and depression.  

 

2.2.1.  Depression 

Caring for a patient with a serious mental illness has a multidimensional impact on the 

caregiver’s life, often resulting in the caregiver experiencing psychological difficulties (Fekadu 

et al., 2019). Research has shown that caregivers experience considerable stress and feelings 

of powerlessness and despair. The resultant development of mental health problems such as 

depression affects caregivers across the globe with studies in Norther Sweden, Saudi Arabia, 

and Iran producing similar findings (Graneheim & Åström, 2016; Sharif et al., 2020; von 

Kardorff et al., 2016). Furthermore, research has found that it is common for caregivers to 

experience depression when they lack social support (Graneheim & Åström, 2016). Liang et 

al. (2016) found that the difficult behaviours patients display, such as physical and verbal 

aggression, are contributing factors to the development of depression in Chinese caregivers.  

Lekoadi et al. (2019) claim that caring for BD patients puts the South African caregiver 

at risk of developing clinical depression. Research shows that the significant challenges 

caregivers face lead to a high percentage of caregivers experiencing depression and anxiety in 

countries such as Iran, America,  and Brazil (Akbari et al., 2018; Perlick et al., 2016; Souza et 

al., 2017). Statistics regarding depression among caregivers have been well cited in current 

literature (Jeyagurunathan et al., 2017; Kızılırmak & Küçük, 2016; Liang et al., 2016; Souza 

et al., 2017; Vermeulen et al., 2015). Perlick et al. (2016) state that depression in caregivers 



THE LIVED EXPERIENCES OF CAREGIVERS  8 

presents a serious concern, as one-third to one-half of BD caregivers in America meet the 

diagnostic criteria for depression or at least report symptoms of depression.  

 

2.2.2. Anxiety 

Baruch et al. (2018) stated that caregivers of BD patients are at an increased risk of 

developing mental health problems such as anxiety. Besides the Vermeulen et al. (2015) 

international study, there is a scarcity of literature related specifically to anxiety in caregivers. 

However the theme does appear in studies on the subjective implications experienced by 

caregivers, which will be presented below.  

Vermeulen et al. (2015) conducted a global survey with the primary aim of assessing 

the experiences of family caregivers caring for relatives who had been diagnosed with a severe 

mental illness. When looking at the emotional implications caregivers experience, they used 

anxiety as a criterion. They found that 38% of the caregivers felt unable to cope with the 

constant anxiety of caregiving. One-third of the family caregivers reported that they lacked 

sleep because of stress and worry (Vermeulen et al., 2015). 

In their study on caregivers of BD patients in Mexico, Vargas-Huicochea et al. (2018) 

found that participants reported symptoms of anxiety and depression due to the impact of being 

a caregiver. Similarly, Jeyagurunathan et al. (2017) found that 12,7% of the primary caregivers 

in their Singapore-based study had symptoms of anxiety. It has been found that higher anxiety 

levels experienced by the caregiver are as a direct result of longer contact time between the 

patient and caregiver (Souza et al., 2017).  

 

2.2.3. Psychological Distress 

In a study conducted by Sharif et al. (2020), Saudi Arabian caregivers reported 

developing mental disorders and psychological distress as a consequence of caregiving. Baruch 



THE LIVED EXPERIENCES OF CAREGIVERS  9 

et al. (2018) claim that caregivers of BD patients experience noteworthy psychological distress. 

A high demand for care by the patient, and family dysfunction contributes to the psychological 

distress experienced by the caregiver (Fekadu et al., 2019; Koutra et al., 2016). 

Due to the unpredictable behaviour in many individuals with BD, Malaysian and Iranian 

caregivers have reported that they remain in ‘stand-by’ mode so as to cope with the behaviours 

(Mulud & McCarthy, 2017; von Kardorff et al., 2016). This ‘stand-by’ mode is often described 

as a heightened sense of awareness experienced by the caregiver, where they must remain alert 

and pre-empt possible behaviours that the patient may display at any given moment (Mulud & 

McCarthy, 2017). The erratic and impulsive behaviour may be challenging for the caregiver to 

cope with, and is often distressing to them (Mulud & McCarthy, 2017; September & Beytell, 

2019).  

Siddiqui and Khalid (2019) found that the quality of the Pakistani caregiver’s life is 

compromised by the psychological distress they experience. The reduction in quality of life 

has also been attributed to the financial, social, and emotional difficulties that come with being 

a caregiver in Singapore (Jeyagurunathan et al., 2017), as well as the fact that Iranian caregivers 

use much of their time and energy to care for the patient (Akbari et al., 2018). 

Other factors that have been found to lead to caregivers experiencing psychological 

distress are the symptom-severity and level of functioning of the patient (Hegde et al., 2019), 

not being ready to take responsibility for the patient (Rahmani et al., 2018), and a lack of 

support from family members, spouses, friends, mental health professionals, and the 

community at large (Hegde et al., 2019; Rahmani et al., 2018; September & Beytell, 2019).  

 

2.2.4. Caregiver Support 

Ayalew et al. (2019) state that an important predictor of the implications faced by the 

Ethiopian caregiver is their social support. It has been found that caregivers experience fewer 



THE LIVED EXPERIENCES OF CAREGIVERS  10 

implications when they have better social support, and vice versa (Ayalew et al., 2019; Mulud 

& McCarthy, 2017). In their study, Mulud and McCarthy (2017) found that the Malaysian 

caregiver’s marital status was a significant predictor of the implications they faced, as 

caregivers who were married (not to the patient) reported fewer implications than those who 

were divorced, widowed, or separated. The researchers concluded that receiving support or 

assistance from a spouse may be beneficial as a source of financial, as well as practical, support 

for caregivers (Mulud & McCarthy, 2017).   

Granek et al. (2018) found that parental support, and the support of friends, are vital for 

the caregiver in Israel. The researchers note that partners of patients with BD require emotional 

and practical support from their parents and parents-in-law to cope with the patient. Friends 

help the caregiver feel accepted, listened to, and provide other forms of practical and emotional 

support (Granek et al., 2018).  

When assuming the role of a caregiver, individuals often have to balance the disruption 

brought about by the disorder and the realisation that many of the support systems they have 

relied on in the past are no longer available to them (Shamsaei et al., 2015). This is often 

because the usual sources of support – extended family, friends, and co-workers – have limited 

knowledge of the illness, and therefore tend to stigmatise the patient and/or the caregiver in 

Iran (Shamsaei et al., 2015). 

 

2.3. Social Implications 

In their research, Fekadu et al. (2019) found that caring for someone with a severe 

mental illness has a profound socio-economic impact on the caregiver, including divorce, 

problems with family cohesion, treatment-related costs, and unemployment. Similarly, Vargas-

Huicochea et al. (2018) found that the areas most impacted in the lives of Mexican caregivers 



THE LIVED EXPERIENCES OF CAREGIVERS  11 

of BD patients were relationships, the caregiver’s personal growth and autonomy, and the 

financial implications of caregiving.  

It has been found that caregivers often feel isolated and lonely (Graneheim & Åström, 

2016; Vermeulen et al., 2015). Kızılırmak and Küçük (2016) state that in Istanbul, most 

patients live at home and spend most of their time there, and the caregiver consequently 

becomes less productive and withdrawn from society. Mulud and McCarthy (2017) found that 

caregivers in Malaysia spent between four and eight hours of their day caring for the patient. 

The more time caregivers spend caring for the patient, the less time they have to engage in 

social activities and their leisure time reduces, therefore making the implications of caring 

greater for the caregiver (Mulud & McCarthy, 2017).  

Similarly, Ntsayagae et al. (2019) claimed that the caregiving role comes with 

numerous sacrifices in the sub-Saharan African caregiver’s social and occupational life. These 

sacrifices further include the financial implications of supporting the patient. It has also been 

found that caregivers in Iran withdraw from society due to the stigma they face as a result of 

their association with a BD patient (von Kardorff et al., 2016). 

 

2.3.1. Stigma 

While it is well known that considerable stigma is associated with the mentally ill, it is 

essential to note that the stigma extends beyond the patient and falls onto the caregiver. The 

level of stigma experienced by the caregiver considerably impacts their experience as a 

caregiver in Malaysia (Mulud & McCarthy, 2017). The stigma experienced by caregivers adds 

to their already challenging task as a caregiver (Mulud & McCarthy, 2017; Siddiqui & Khalid, 

2019). 

Iseselo et al. (2016) claim that there is a relationship between the social support 

Tanzanian caregivers receive and the stigma associated with having a mentally ill relative. 



THE LIVED EXPERIENCES OF CAREGIVERS  12 

Their study showed that families hide the patient to avoid being stigmatised (Iseselo et al., 

2016). Sharif et al. (2020) found that stigma towards the caregiver came from family members 

more than from Saudi-Arabian society. Research has found that caregivers experience social 

ostracism and stigma from their family as well as the wider community (Graneheim & Åström, 

2016; Marimbe et al., 2016; September & Beytell, 2019; von Kardorff et al., 2016).  

On the other hand, however, Nawura et al. (2019) found that in Arabian cultures, 

caregivers are often the subjects of ostracism and blame not due to the patients behaviour or 

diagnosis, but rather if the caregiver is perceived to be neglecting their family member who 

has been diagnosed with BD or schizophrenia. In line with this, Ghannam et al. (2017) state 

that this stigma is related to both religious and cultural beliefs that imply that Jordanian family 

members are obligated to take care of their relatives, regardless of the possible social, 

economic, or psychological implications this may have on them. 

Caregivers are often blamed for the patients illness; they are generally the first ones 

who notice the patients behaviours, and this disruption to the family causes much confusion 

and worry (Graneheim & Åström, 2016). Family members tend to place blame on the 

caregivers for noticing these behaviours until such a time that they accept the diagnosis 

(Graneheim & Åström, 2016). This blame takes on different forms, however, is often linked to 

the cultural beliefs of the family and society. Caregivers in Zimbabwe are accused of bringing 

the illness into the family home with husbands blaming their wives for the child’s mental illness 

(Marimbe et al., 2016). Iranian caregivers express that the process of hospitalisation itself 

tarnishes the families reputation and causes family caregivers to be blamed for the patient’s 

illness (von Kardorff et al., 2016). 

Stigma experienced by caregivers can be associative/courtesy stigma and affiliate 

stigma (Goffman, 1963; Mehta & Farina, 1988). Associative/courtesy stigma occurs when the 

caregiver is stigmatised because they are associated with a patient suffering from a mental 



THE LIVED EXPERIENCES OF CAREGIVERS  13 

illness. On the other hand, affiliate stigma is when the caregiver becomes affected by the stigma 

regarding mental illness in society (Grover, Aneja et al., 2019; Grover, Avasthi et al., 2017).  

Affiliate stigma is said to comprise of three interlocking components; affective, 

cognitive, and consequent behaviours. Being affiliated with a stigmatised mentally ill 

individual elicits feelings of helplessness (cognitive component) and unhappiness (affective 

component) in caregivers (Grover, Aneja et al., 2019; Grover, Avasthi et al., 2017). Affiliate 

stigma leads to caregivers concealing the patient’s diagnosis from family members, 

withdrawing from society, or even moving away from the patient (consequent behaviours), 

which has detrimental consequences for the patient (Grover, Aneja et al., 2019; Grover, 

Avasthi et al., 2017). The results of Grover, Aneja, et al.’s (2019) study revealed that one-third 

of caregivers in North India experienced courtesy or affiliate stigma when caring for a patient 

with BD. 

 

2.3.2. Financial Implications 

Addo et al. (2018) claim that caregivers in sub-Saharan Africa incur substantial direct 

and indirect costs when caring for mentally ill patients. Being the caregiver for a family 

member diagnosed with a mental illness has been shown to have moderate to severe financial 

implications for the family, with 85% of caregivers in Masa’Deh’s (2017) Jordanian study 

reporting financial implications.  

Studies in Mexico, Tanzania,  and Zimbabwe have found that the reasons BD caregivers 

face such severe financial implications are due to: treatment-related costs, a lack of productivity 

on the patient’s behalf, the debt the patient acquires when they are in a manic state (Vargas-

Huicochea et al., 2018), and the caregiver leaving their job, or having limited time to work, to 

assume the caregiver role (Iseselo et al., 2016; Marimbe et al., 2016). Caregivers have reported 



THE LIVED EXPERIENCES OF CAREGIVERS  14 

using the money they make from their limited working time to care for their relative (Iseselo 

et al., 2016).  

Data collected by Kızılırmak and Küçük (2016) revealed that the majority of the 

caregivers in Istanbul had financial problems and were unemployed. Similarly, Ghannam et al. 

(2017) found that among their Jordanian caregiver sample: 70,9% were unemployed, 10,2% 

worked full time, 9,2% were retired, and 6,1% worked part-time jobs. The researchers 

concluded that caregivers who left their jobs to care for the patient were confronted with 

significant financial challenges and consequently had a poor financial status. The researchers 

found that the time the caregivers spent providing care ranged from 1-24 hours per day, with 

an average of 13,4 hours per day (Ghannam et al., 2017). The loss of productivity due to being 

a caregiver has significant financial implications for the caregiver and cannot be ignored (Addo 

et al., 2018). 

 

2.3.3. Family Functioning 

Having a family member with a mental disorder presents challenges for the other 

members of the family, disruptions in the regular household routine, and strained relationships 

within the family (Iseselo et al., 2016; Kızılırmak & Küçük, 2016; Reinares et al., 2016). 

According to Koutra et al. (2016), families in Greece adapt to the psychological and physical 

needs of a mentally ill family member through various dynamic processes.  

Episodes of mania present in BD patients cause the homeostasis of the family to become 

unbalanced. Caregivers become responsible for multiple tasks and struggle to maintain the 

shifting roles in the family (Sharif et al., 2020). Research in sub-Saharan Africa shows that 

having a mentally ill family member means family plans are made around the patient, daily 

routines and chores are no longer executed, family members are exposed to new emotions, and 

the caregiver has to change their lifestyle in order to assume the caregiving role (Iseselo et al., 



THE LIVED EXPERIENCES OF CAREGIVERS  15 

2016; Ntsayagae et al., 2019). Furthermore, long-standing family roles are challenged, causing 

disagreements between family members and ultimately weakening family relationships 

(Iseselo et al., 2016; Ntsayagae et al., 2019). 

During the initial stages of the disorder, it is common for the entire family to support 

the patient by reorganising the family dynamics and routines to accommodate the patient. As 

time goes on and the disorder becomes established, research has shown that many family 

members are no longer willing to be so accommodating and distance themselves from the 

patient, leaving one person behind to take on the role of the caregiver (Vargas-Huicochea et 

al., 2018).  

 

2.4. The Relationship Between the Caregiver and the Patient 

With the deinstitutionalisation of mental health care users, the responsibility of caring 

for the patient in all their stages has shifted to the caregiver (Tan et al., 2012). Greater 

implications for the caregiver have been linked particularly to social support and the presence 

of closer family ties between patients and caregivers in Ghana (Dadson et al., 2018). When 

caring for a family member with a mental illness, parents, siblings, spouses, and children all 

have their own perspectives and experiences (Rahmani et al., 2018).  

The research on the relationships between caregivers and patients is somewhat 

contradictory, with some research indicating that relationships get stronger, and others 

indicating a weakening in the relationship. While there is limited research on the rewards of 

caregiving, Bauer et al. (2015) found that caregivers in Germany experience increased cohesion 

and relationships with patients and family members, and praise from patients and others for the 

caregiving. Similarly, Graneheim and  Åström (2016) found that caregivers in Northern 

Sweden enjoyed their relationship with their mentally-ill family members. The researchers 

found that the caregivers in their study felt a great sense of responsibility for the patient, 



THE LIVED EXPERIENCES OF CAREGIVERS  16 

however, they did not blame them for their mental illness (Graneheim & Åström, 2016). Mulud 

and McCarthy (2017) shared similar findings, where less severe implications were reported 

when the Malaysian caregivers realised that their loved ones' conduct was brought on by the 

illness rather than by the patient's personality.  

On the other hand, it has also been found that maintaining a meaningful relationship 

with a loved one who suffers from a mental illness is a challenge for caregivers (Graneheim & 

Åström, 2016). When the relationship with the patient becomes particularly challenging, the 

caregiver may experience thoughts of escaping the situation. However, they realise that running 

away is not an alternative as they cannot give up on their loved one (Graneheim & Åström, 

2016). Research shows that female caregivers in India are more likely to have problems 

regarding the quality of their relationship with the patient, whereas male caregivers experience 

more constraints on their autonomy (Yadav et al., 2018). According to a study conducted in 

Germany, a significant predictor of constraints on their autonomy was the leisure time 

sacrifices that males had to make once becoming a caregiver (Bauer et al., 2011). 

 

2.4.1. The Parent-Child Relationship 

An important predictor of the implications of care is the caregivers' relationship to the 

patient (Ayalew et al., 2019; Dadson et al., 2018). Compared to being a parent, being a patient's 

spouse, brother, son or daughter, or other relative increases the strain on the caregiver. Viewed 

alongside other carers, parent caregivers in Southwest Ethiopia experience higher levels of 

satisfaction and engagement while giving care (Ayalew et al., 2019). Similarly, Jeyagurunathan 

et al. (2017) found that compared to spousal caregivers, parent caregivers in Singapore 

experience fewer psychological implications when caring for their children. They state that the 

differences seen between the two caregivers could be due to the fact that spousal caregivers 

may have lost the person they confide in, their source of financial support, the person with 



THE LIVED EXPERIENCES OF CAREGIVERS  17 

whom they share household responsibilities, and the person who helps them raise their 

child/ren (Jeyagurunathan et al., 2017).  

Alzahrani et al. (2017) do not agree with this, as they found that being a female (mother, 

daughter, or spousal) caregiver and caring for a younger patient increases the implications the 

Saudi Arabian caregiver faces. In line with this, Andershed et al. (2017) state that mental 

illnesses are often life-long conditions, and for Swedish parent-caregivers, dependence is 

markedly different than if they were caring for a child without a mental disorder. These parents 

often take on significant responsibilities that affect their quality of life and life situations 

(Johansson et al., 2015).  

While there is limited research on the relationship between child-caregivers of patients 

with BD, it has been found that the children of parents with BD in Germany experience 

significant implications and are at a particularly high risk of suffering from psychosocial 

difficulties if they are the patient’s only caregiver (Bauer et al., 2015). Fekadu et al. (2019) 

claimed that children of parents with severe mental illnesses are at a high risk of developing 

mental and physical illnesses due to the stigma, financial challenges, genetic vulnerability, and 

psychological implications of caring for their parent. The researchers found that caring for a 

parent with a mental illness has long-lasting implications for the child-caregiver impacting 

their health and relationships in adulthood (Fekadu et al., 2019).  

 

2.4.2. Marital Relationships  

For spouses of mentally ill patients in Jordan, the inability of the patient to fulfil sexual 

requirements, the poor quality of the marriage, and the lack of affection are the causes of 

spouse-related caregiving implications (Ghannam et al., 2017). Furthermore, it has been found 

that married Indian caregivers have limited support outside of their marriage, making for a 

challenging caregiving experience (Yadav et al., 2018). 



THE LIVED EXPERIENCES OF CAREGIVERS  18 

Bipolar disorder has implications for all relationships in the patient’s life, and Naqvi et 

al. (2021) state that marriage is no exception to this. The divorce rate in the BD patient 

population is extremely high, which clearly indicates that this disorder brings about challenges 

in interpersonal connections (Granek et al., 2016). It has been found that being a spousal 

caregiver of a patient with BD in Israel and Pakistan has severe emotional implications, often 

in the form of the caregiver feeling: anxious, lonely, helpless, frustrated, resentful, and 

hypervigilant (Granek et al., 2016; Granek et al., 2018; Naqvi et al., 2021). Spouses also 

experience fear of relapses and are concerned about the patient’s future (Granek et al., 2016; 

Naqvi et al., 2021).  

Granek et al. (2016) aimed to understand the impact that BD has on spousal-caregivers 

and their marriage in Israel. The caregivers expressed that being married to a patient with BD 

involved much self-sacrifice. The spouses described sacrificing things that gave them pleasure 

in life (such as their hobbies), and feeling as though they have neither the time, nor energy, to 

consider their own needs and goals. Overall, most partners felt that their life was centred on 

the patient and their care (Granek et al., 2016). 

According to previous studies conducted in India and Italy, most caregivers for family 

members with chronic illnesses, particularly the elderly and those with mental illness, are 

women (Plank et al., 2012; Sharma et al., 2016). Caring for a mentally ill husband may present 

a different experience for a female spousal caregiver when compared to caregivers who have  

different relationships to the patient (Sharma et al., 2016; Tan et al., 2012). Additionally, 

caregiving responsibilities are intricately linked to the ordinary day-to-day activities of female 

spousal caregivers, such as parenting, working, and maintaining a home (Rahmani et al., 2018).  

In their study, Rahmani et al. (2018) found that wives of mentally ill husbands in Iran 

experience a deterioration in their emotional connection with their husbands over time. They 

reported that the wives emotionally distanced themselves from their husbands and experienced 



THE LIVED EXPERIENCES OF CAREGIVERS  19 

internal resentment towards them when subjected to coercive conditions in their marriages. 

Such conditions included Iranian wives being treated like slaves, being accused of things they 

did not do, being on the receiving end of their husband’s hostility, and being required to ask 

permission to leave the house to engage in leisure time activities (Rahmani et al., 2018). Naqvi 

et al. (2021) state that wives in Pakistan feel anger towards their husbands with BD when they 

are experiencing manic episodes. This is particularly true when their husbands go from being 

loving and supportive to being angry and distant, making them unrecognisable to their wives 

(Naqvi et al., 2021).  

Rahmani et al. (2018) found that having children made the caregiving experience more 

challenging for the Iranian wives. However, the most significant issue in their life was financial 

strain because their mentally ill husband frequently served as the major breadwinner. The 

female spouses lost their financial security and now had to juggle various responsibilities 

(Rahmani et al., 2018). Some female spousal-caregivers have found that making peace with 

the situation and approaching their husband with BD with patience is the only way to regain 

emotional stability (Naqvi et al., 2021).  

 

2.5. The Changing Role of the Caregiver 

Kızılırmak and Küçük (2016) claimed that the caregiving role is often not chosen, and 

caregivers seldom get time to plan for it, therefore leaving them minimal time to adjust to this 

new role. According to Pompili (2014), the transition to becoming a caregiver means that the 

existing relationship between the patient and caregiver is going to change from what it was 

before the onset of the disorder into a “carer-cared for” (Pompili, 2014, p.5) relationship. It is 

imperative that the family, and the caregiver in particular, learn how to balance the 

responsibility of caring and the interference it will cause in their previous routines (Rahmani 

et al., 2018). It has been shown that caregivers who are not adequately prepared for this 



THE LIVED EXPERIENCES OF CAREGIVERS  20 

transition, and who are not assessed by healthcare professionals to determine if they are able 

to take on the role of caregiving, experience severe implications as a caregiver (Andershed et 

al., 2017; Noohi et al., 2016). 

It has been established that caregivers of patients with BD sacrifice themselves and put 

the needs of the patient above their own (Graneheim & Åström, 2016; Van der Walt & 

Carbonatto, 2019). Graneheim and Åström (2016) found that Swedish caregivers adapted their 

lives in order to accommodate the patient’s needs. Furthermore, to prevent relapses, the 

caregivers made sure to create positive life situations for the patients, adding further 

responsibilities to their caregiving tasks (Graneheim & Åström, 2016). Caregivers in 

Graneheim and Åström’s (2016) study explained that their tasks were to comfort, guide, and 

protect their loved ones, and they consequently felt that they needed to be rational at all times 

in order to solve any potential problem the patient may have. This placed considerable pressure 

on the caregivers, often making them blame themselves when their loved ones relapsed 

(Graneheim & Åström, 2016). 

Lewis (2015) found that caregivers provide tremendous amounts of physical care, 

medication administration, and emotional assistance during the patient’s depressive episodes. 

Even when the patient was unemployed, caregivers took on the household chores and other 

duties that the patient typically handled (Lewis, 2015). Rahmani et al. (2018) found that the 

additional role of caregiving places considerable stress on women who already play multiple 

roles in their homes, such as being mothers and housekeepers. These wives described being 

trapped in different roles and saw themselves as the only source of support for the family. 

Female caregivers neglected themselves, eventually forgot who they were, and experienced a 

loss of self as a result of taking care of their families, while simultaneously helping their 

mentally ill husbands (Rahmani et al., 2018). 



THE LIVED EXPERIENCES OF CAREGIVERS  21 

Being the caregiver of a patient with BD means that one has to balance competing needs 

and overcome feelings of being needed and rejected simultaneously (Lewis, 2015; van den 

Heuvel et al., 2018). Lewis (2015) claims that this balancing act makes caregivers feel trapped 

in their role leading to resentment. Finding the balance between being a caregiver and 

maintaining their autonomy is challenging for caregivers (Graneheim & Åström, 2016; 

Shamsaei et al., 2015). 

 

2.6. Theoretical Framework 

This research was viewed through the lens of Lazarus and Folkman’s (1984) theory of 

stress and coping, which comprises three main concepts: stress, appraisal, and coping (See 

Figure 1). The theory has been used as the predominant approach to studying family caregiving 

(Hegde et al., 2019). 

Prior research has made it evident that caregivers face considerable stress during the 

caregiving process. According to Schulz and Sherwood (2008): 

Caregiving has all the features of a chronic stress experience: It creates physical and 

psychological strain over extended periods of time, is accompanied by high levels of 

unpredictability and uncontrollability, has the capacity to create secondary stress in 

multiple life domains such as work and family relationships, and frequently requires 

high levels of vigilance. (p. 23) 

The main stressors for caregivers are the patient’s behaviours and illness, as well as the 

disruption in the caregiver’s life (Szmukler et al., 1996). Psychological stress will be 

experienced by caregivers when they feel that the demands of caregiving exceed the resources 

available to them, which consequently endangers their well-being (Lazarus & Folkman, 1984; 

Folkman, 2010). Why, then, do some people experience stress while others in a similar 

situation do not? Lazarus and Folkman (1984) explain: 



THE LIVED EXPERIENCES OF CAREGIVERS  22 

psychological stress is determined by the person's appraisal of a specific encounter with 

the environment; this appraisal is shaped by personal factors including commitments, 

vulnerabilities, beliefs, and resources and by situation factors including the nature of 

the threat, its imminence, and so on. (p. 289) 

Based on the stress-coping theory, how the caregiver interprets their situation ultimately 

determines the stress level they will experience (Lazarus & Folkman, 1984). In the context of 

this research, the experience of caregiving is considered as the appraisal of the demands faced 

by the caregiver (Szmukler et al., 1996). The caregiver’s appraisal may be influenced by 

mediating factors such as the degree of social support they receive, their relationship with their 

family, and even their personality (Szmukler et al., 1996). 

When caregivers are able to manage the demands of caregiving and the emotions they 

experience as a consequence of caregiving, Lazarus and Folkman (1984) state that the caregiver 

is coping. Effectively coping with the stress brought about by caregiving will protect the 

caregiver’s mental and physical health (Folkman, 2010). Psychological and physical illnesses 

are said to be the outcome of an interaction between the caregiver’s appraisal and the way the 

caregiver copes (Szmukler et al., 1996). Due to the nature of this study, the researcher used this 

model to get a holistic view of the caregiving process, and all the elements that interact to 

determine the implications faced by the caregiver.  

  



THE LIVED EXPERIENCES OF CAREGIVERS  23 

Figure 1  

A stress-coping model of caregivers (Szmukler et al., 1996). 

 

 

 

 

 

 

 

 

 

 

 

2.6.1. Coping Strategies Used by Caregivers 

Due to the interactive nature of appraisal and coping in the stress-coping model, and 

the consequent outcomes thereof (Szmukler et al., 1996), caregiver coping needs to be 

explored. It has been found that caregivers use various coping strategies to deal with the 

patient’s illness, and the caregiver tasks (Sharif et al., 2020; Van Der Voort et al., 2007). The 

role of a caregiver differs depending on their relationship with the patient. When looking at 

traditional gender roles in society, women are the caregivers of the family. However, should 

the woman become the mentally ill family member, traditional roles will have to switch, having 

implications for the caregiver (Van Der Voort et al., 2007). 

It has been found that caregivers make use of problem-focused and emotion-focused 

coping strategies (Chakrabarti & Gill, 2002). Problem-focused coping strategies are referred 

to as constructive coping strategies which the caregiver uses to modify challenging situations. 

STRESSOR 
Illness; 
demands 
placed on 
caregiver 

MEDIATING factors 

APPRAISAL 

Experience 

of caregiving 
COPING 

OUTCOMES 

Psychological and physical illnesses 



THE LIVED EXPERIENCES OF CAREGIVERS  24 

Such coping strategies include problem-solving, communication, and looking for information. 

On the other hand, caregivers may use emotion-focused coping strategies, which are less 

adaptive. When using these strategies, the caregiver is attempting to balance their emotional 

response to stress by avoiding the situation or simply giving up (Chakrabarti & Gill, 2002).  

Which coping strategy the caregiver uses is dependent on various factors. It has been 

found that coping is directly related to the implications of caring for the patient, the severity of 

the patient’s disorder, the caregiver’s expressed emotion (EE), and the support available to 

them (Chakrabarti & Gill, 2002; Hedge et al., 2019).  Caregivers have been found to use 

maladaptive coping strategies (emotion-focused) when there are high levels of patient 

dysfunction, high caregiver EE, greater implications of caregiving, and a lack of support 

(Chakrabarti & Gill, 2002; Dadson et al., 2018; Hedge et al., 2019).  

Kızılırmak and Küçük (2016) found that the caregiver’s mental health deteriorates as 

the implications of caring for the patient increases. As their mental health deteriorates, their 

ability to cope becomes significantly lower, which in turn causes the caregiver to perceive their 

role as a caregiver as even more challenging (Kızılırmak & Küçük, 2016). Granek et al. (2018) 

found that caregivers  opted to use emotion-focused coping strategies, such as focusing on the 

positives in the situation and lowering their expectations. Furthermore, the caregivers learnt to 

take things one day at a time (Granek et al., 2018). 

It has been well cited in literature that the way a caregiver copes with their role is 

gender-dependant. Females have been found to face more challenges when adjusting to their 

role as a caregiver (Ayalew et al., 2019; Rahmani et al., 2018). The caregiving role is 

stereotypically a woman’s duty (Rahmani et al., 2018); however, the added responsibilities 

such as being a mother, primary breadwinner, household manager, and main emotional 

supporter make the caregiving role a particularly challenging one for females, especially if 

these responsibilities were shared before (Ayalew et al., 2019; Rahmani et al., 2018). When 



THE LIVED EXPERIENCES OF CAREGIVERS  25 

compared to their female counterparts, male caregivers report significantly fewer implications 

when caring for a patient with BD (Mulud & McCarthy, 2017).  

It has been suggested that male and female caregivers express and handle the 

implications of caregiving differently, with females opting to use emotion-focused strategies. 

In contrast, males use problem-focused strategies (Mulud & McCarthy, 2017). Séoud and 

Ducharme (2015) found that caregivers who utilised problem-focused coping strategies were 

more likely to develop a resilience towards caregiving. Research by Cassidy et al. (2014) and 

Scott (2013) found that male caregivers are more resilient than female caregivers, making them 

less likely to be affected by the caregiving process. It has been argued that resilience may 

explain how male caregivers are able to cope with the challenges brought about by caring for 

patients with mental illnesses (Mulud & McCarthy, 2017).  

 

2.7. Conclusion 

In conclusion, the above literature has shown that caring for a BD patient has numerous 

implications for the caregiver. While it is evident that caregivers of patients with BD have 

received attention in research, much emphasis has been placed on the term ‘burden’, and 

quantitative studies have dominated this field of study. Furthermore, there is a scarcity of 

research in South Africa. Utilising an interpretative phenomenological analysis approach in 

this qualitative study, the researcher intends to add to the current literature by giving South 

African caregivers an opportunity to share their lived experiences.     



THE LIVED EXPERIENCES OF CAREGIVERS  26 

 Chapter Three: Methods and Ethical Considerations 

3.1. Research Design 

A qualitative research design was chosen as it allowed the researcher to understand the 

lived experiences of the participants and interpret these experiences with regard to the chosen 

phenomenon (Creswell, 2013). The phenomenological theoretical tradition was relevant to this 

study as it allowed the researcher to gain an in-depth understanding of how caregivers 

experience the psychological and social implications of caring for patients with bipolar disorder 

(BD).  

Phenomenology involves descriptions of a phenomenon by ordinary people who have 

experienced the phenomenon (Giorgi, 1979) with the aim of understanding what this 

experience means to them (Moustakas, 1994). According to Creswell and Poth (2018), 

phenomenology describes the commonalities in lived experiences among individuals regarding 

the specific phenomenon under investigation. In studies with a phenomenological 

underpinning, participants are asked questions regarding ‘what’ they experienced and ‘how’ 

they experienced the phenomenon (Moustakas, 1994). The current study used individual 

interviews to gather information on the participants’ lived experiences.  

 

3.1.1. Interpretive Paradigm 

The interpretive paradigm, as defined by Burrell and Morgan (1979), is a relevant 

paradigm for use in qualitative studies (Alase, 2017), and was used in this research study. The 

paradigm allows for an interpretive narration of how the chosen phenomenon is subjectively 

experienced by the research participants (Burrell & Morgan, 1979).  

In order to answer the research question, the researcher used an interpretive paradigm 

to gather data relating to the participants’ lived experiences and used that data to construct an 

understanding of the world through the eyes of the participant (Thanh & Thanh, 2015). The 



THE LIVED EXPERIENCES OF CAREGIVERS  27 

interpretive paradigm was chosen in order to gain an understanding of the psychological and 

social implications of caring for patients with BD, from the caregiver’s perspective.  

 

3.1.2. Interpretative Phenomenological Analysis 

Interpretative phenomenological analysis (IPA) was chosen as the research approach 

for this study. IPA is a qualitative approach that seeks to understand phenomena from a first-

person perspective and places value on the subjective experiences of individuals (Eatough & 

Smith, 2017). IPA is grounded in phenomenology and informed by hermeneutics; the former 

examines experience from the view of the participants, while the latter is the theory of 

interpretation (Pietkiewicz & Smith, 2014). In addition, Smith et al. (2009) refer to IPA as 

being idiographic. The idiographic orientation allows the researcher to examine and analyse 

the unique contexts  underpinning the participants’ individual experiences (Pietkiewicz & 

Smith, 2014).  

 

3.2. Participants 

In line with the IPA approach, a relatively homogenous sample was chosen for this 

study (Eatough & Smith, 2017; Howitt, 2016). It has been suggested that six to ten participants 

are favourable in IPA studies as this will allow for in-depth engagement with each individual 

case, while still providing enough data to examine similarities and differences among the lived 

experiences of the participants (Howitt, 2016; Pietkiewicz & Smith, 2014; Smith et al., 2009). 

Purposive sampling is recommended in order to create a homogenous sample (Smith et al., 

2009). The researcher purposively selected six participants in this study based on the inclusion 

criteria presented below.  

Inclusion criteria: The participant had to: be a caregiver of a BD patient; be over the 

age of 18; be able to understand and converse in English; reside in Gauteng, South Africa. 



THE LIVED EXPERIENCES OF CAREGIVERS  28 

Furthermore, the patient whom the caregiver is looking after: may be recently diagnosed or 

may have a long-standing diagnosis; must have an official diagnosis of BD (diagnosed by a 

professional). The gender of the participant was not considered as an inclusion criterion as the 

researcher wanted to include caregivers of any gender.  

Exclusion criteria: Participants were excluded from the study if they were unable to 

provide valid consent to participate in the study, and/or if they were a caregiver of a patient 

with any psychiatric condition other than BD.  

 

3.3. Sampling and Data Collection Procedure 

Participant sampling and data collection commenced after the researcher had obtained 

ethical clearance from the Ethics Committee (Protocol number: MASPR/21/07). The 

researcher made use of gatekeepers (two specialist psychiatrists and one clinical psychologist) 

to find potential participants for this study. The researcher was given a list of specialist 

psychiatrists and psychologists in private practice to contact by the principal psychologist at 

Evexia Psychiatric Day Hospital. The researcher emailed the potential gatekeepers and 

provided a brief overview of her study, and attached the gatekeeper information letter 

(Appendix C) to the email.   

Upon return of the gatekeeper’s permission letter, the researcher left participant 

information sheets (Appendix A) with the gatekeepers to give to suitable individuals, who then 

had the autonomy to decide if they wished to contact the researcher or not. Participants who 

contacted the researcher were sent a consent form (Appendix B) via email which had to be 

signed and returned to the researcher. Following this, an interview was scheduled at a time 

convenient to both the participant and researcher. Due to the COVID-19 pandemic, the 

participants were given the option to have the interview via a virtual communication platform 

such as Zoom, Microsoft Teams, or Skype. Participants were also given the option to meet in 



THE LIVED EXPERIENCES OF CAREGIVERS  29 

person if they preferred. Prior to applying for ethical clearance, the researcher had secured a 

private, sound-proof room (Appendix D) at Evexia Psychiatric Day Hospital (Midstream) 

which would be set up according to COVID-19 prevention guidelines of social distancing and 

sanitization; both the researcher and participant would wear a mask throughout the interview. 

However, all six participants opted for online interviews (five were conducted on Zoom and 

one on Skype). 

 

3.4. Data Collection Tools 

When choosing a suitable data collection tool, the researcher kept in mind that IPA 

requires a method which allows participants to provide rich, detailed descriptions of their lived 

experiences. Semi-structured, one-to-one interviews are preferred in IPA studies as they allow 

rapport to be developed while giving participants the space to speak freely (Pietkiewicz & 

Smith, 2014; Smith et al., 2009). In order to facilitate this process, the researcher set up an 

interview schedule (Appendix E) with questions to be asked in the interview (Smith et al., 

2009). While the majority of these questions are based on the research question and the 

literature, some questions were guided by Iseselo et al. (2016) and Vargas-Huicochea et al. 

(2018).  

The interviews lasted approximately forty-five to sixty minutes (Alase, 2017) and were 

recorded with an electronic recording device (participants provided consent for this). The 

researcher then made verbatim transcripts of each interview (Pietkiewicz & Smith, 2014). 

 

3.5. Data Analysis 

Upon completion of the data collection, the researcher analysed the data gathered from 

the interviews according to the IPA data analysis steps suggested by Smith et al. (2009).  



THE LIVED EXPERIENCES OF CAREGIVERS  30 

Step one involved the researcher engaging with the original data by reading and re-

reading the transcripts (Smith et al., 2009). The second step involved initial noting by deeply 

exploring the language used by the participant as well as how they make sense of their 

experience, while noting anything of interest (Smith et al., 2009).  

During the third step, the researcher started developing emerging themes by analysing 

the exploratory comments made in the previous step (Smith et al., 2009). In the fourth step, the 

researcher searched for connections across the emergent themes (Smith et al., 2009). Step five 

involved moving to the next case by repeating steps 1-4 with each individual transcript (Smith 

et al., 2009). The final step in the data analysis process was looking for patterns across cases 

(Smith et al., 2009). 

 

3.6. Strategies to Ensure Research Worthiness 

In order to establish research worthiness in this study, the researcher utilised the 

following procedures: triangulation; thick, rich data description; peer-reviewing; reflexivity of 

the researcher (which will be discussed in the subsection ‘Role of the IPA Researcher’). The 

researcher acknowledges that member checking should ideally be used as an additional strategy 

to ensure research worthiness, however, this was not feasible due to time constraints. 

Triangulation is the process whereby the researcher looks for a point of convergence 

among multiple sources of data (Creswell & Miller, 2000; Schwandt, 2007). The researcher 

applied one of Denzin’s (1978) methods of triangulation to this study: triangulation across data 

sources (i.e. participants).  

In order to ensure that a thick, rich description of the data were provided, the researcher 

described the participants, setting, and themes of the study in detail (Creswell & Miller, 2000; 

Creswell & Poth, 2018). In doing so, the researcher “creates verisimilitude, statements that 



THE LIVED EXPERIENCES OF CAREGIVERS  31 

produce for the readers the feeling that they have experienced, or could experience, the events 

being described in a study” (Creswell & Miller, 2000, p. 129).   

Peer reviewing is a process during which someone familiar with the research reviews 

the research process and the collected data (Creswell & Miller, 2000; Creswell & Poth, 2018). 

During the entirety of this research process, the researcher was being supervised by an 

experienced supervisor with extensive knowledge in the field.  

 

3.7. Role of the IPA Researcher 

The role of the IPA researcher is to interpret, understand, and amplify the participants’ 

experiences while affording them an opportunity to tell their stories without fear of judgement 

(Alase, 2017). It is vital that the IPA researcher bracket themselves while in the process of data 

collection (Alase, 2017), as well as when designing interview schedules (Smith et al., 2009). 

The process of bracketing as a researcher means that one has to “set aside our prejudgments, 

biases, and preconceived ideas about things” we aim to understand (Moustakas, 1994, p. 85). 

By doing this, the researcher creates a piece of work that tells the subjective lived experiences 

of the participants, leaving readers with the feeling of “I understand better [now] what it is like 

for someone to experience that” (Polkinghorne, 1989, p. 46). The interpretive nature of an IPA 

study requires that the researcher continuously self-reflects and remains aware of any implicit 

or explicit biases to protect the study’s integrity (Alase, 2017). 

In order to do justice to the study, the researcher had to be self-aware throughout the 

entirety of the study. The reason for this was twofold; firstly, as a child-caregiver of a patient 

with BD herself, she had to make sure to not allow her lived experience to influence the way 

she viewed the lived experiences of the caregivers in the study. Secondly, the researcher had 

to create a space where the caregivers in the study felt safe to express themselves without fear 

of judgement. In order to ensure that the participants did not feel judged, she expressed her role 



THE LIVED EXPERIENCES OF CAREGIVERS  32 

as a caregiver to the participants at the start of the interviews while explaining the research 

rationale to them. The reason for doing this was to eliminate the researcher-participant power 

dynamic and to position herself as a fellow caregiver. The aim was to make sure the caregivers 

felt understood and heard, and the researcher believes she achieved this as the participants 

expressed their comfortability in sharing their experiences with a fellow-caregiver.  

 

3.8. Ethical Considerations 

To do no harm to the participants, the researcher followed a sound research design and 

only commenced with data collection after ethical approval had been given (Department of 

Health [DOH], 2015; Smith et al., 2009). The researcher applied for ethical clearance through 

the Human Research Ethics Committee (non-medical). Voluntary participation (DOH, 2015; 

Leedy & Ormrod, 2015) was established by giving participants identified by gatekeepers the 

opportunity to join the study on a voluntary basis.  

Informed consent was gained from participants (Leedy & Ormrod, 2015). The issue of 

consent was revisited at the start of the interview (Smith et al., 2009). Participants were offered 

the right to withdraw from the study until the point of final submission (Smith et al., 2009). 

Raw, unedited transcripts were only viewed by the researcher and supervisor. Thereafter, any 

identifiable information was disguised by means of assigning pseudonyms so as to afford 

participants anonymity in all reporting (Smith et al., 2009). Voice recordings uploaded to a 

computer for analysis were stored in a password-protected folder accessible only to the 

researcher and were destroyed through deletion after the final submission of the research report 

(Alase, 2017).  

  



THE LIVED EXPERIENCES OF CAREGIVERS  33 

 Chapter Four: Findings and Discussion 

4.1. Introduction 

This chapter presents findings based on the interviews held with the participants. The 

discussions of the findings are based on the researchers’ understanding.  

 

4.2. Participant Demographics 

The table below gives an overview of the participants. Four females and two males 

made up the six participants in this study. The participants come from various occupational 

backgrounds; some in high-paying jobs and others in more entry-level jobs. This allowed the 

researcher to explore the financial implications of caring for patients with BD from different 

socio-economic perspectives within the sample. Half of the caregivers are also the patients’ 

significant other, while two are mothers, and one is an adult child-caregiver. This allowed the 

researcher to explore different relationship dynamics and support systems. Finally, two of the 

caregivers are caring for patients who had been diagnosed with bipolar disorder (BD) within a 

year of data collection. This allowed the researcher to understand the differences in coping 

styles among the caregivers based on the length of time spent as a caregiver. 

  



THE LIVED EXPERIENCES OF CAREGIVERS  34 

Table 1  

Demographics of Participants 

Caregiver Demographics 

Name1 Ella Liam Mia Olivia Adam Sophie 

Gender Female Male Female Female Male Female 

Age 28 61 49 40 35 48 

Occupation 
Occupational 

therapist 

Engineering 

manager 

Remedial 

teacher 
Teacher 

Admin 

assistant 
Student 

Race White White White White White White 

Religious 

affiliation 
Christian Nil Christian Christian Christian Christian 

Relationship to 

patient 
Daughter Husband Mother Wife Fiancé Mother 

Patient Demographics 

Gender Male Female Male Male Female Female 

Age 68 45 14 44 34 22 

Year of 

diagnosis 
1998 2017 2021 1999 2009 2021 

 

4.3. Emerging Themes and Subthemes 

After the data were transcribed verbatim, the researcher created codes which allowed 

her to determine emerging themes among the interviews. The following themes will be 

presented below: the ups-and-downs of caregiving; support systems; coping with the patient; 

social implications; the caregiver-patient relationship; stigma; financial implications; caregiver 

needs. The sub-themes relating to these themes will be put forward. 

 

 

 
1 All names are pseudonyms so as to ensure participant confidentiality. 



THE LIVED EXPERIENCES OF CAREGIVERS  35 

Table 2  

Themes and Subthemes 

Theme Subtheme/s 

The Ups-and-Downs of Caregiving 

Anger and frustration 
Psychological distress 

Neglected needs and managing competing 
needs 

Support Systems Lack of support 
Coping With the Patient Gender differences 

Social Implications The impact on the household 
The Caregiver-Patient Relationship  

Stigma  
Financial Implications  

Caregiver Needs  
 

4.3.1. Theme One: The Ups-and-Downs of Caregiving 

This theme was explored in order to gain an overview of the various ways in which the 

caregiving process affects the participants, and to understand the various psychological 

implications of being a caregiver. Managing the unpredictable and variable nature of symptoms 

is one of the most challenging aspects of being a caregiver for a person with BD. Participants 

used descriptive language to express the chaotic, up-and-down nature of the disorder. When 

asked to explain what it feels like to be a caregiver, the participants described the following:  

 

“You know, it is difficult, you do get your ups and downs and you just pick that person 

up again, and that’s not always the easiest…” (Liam, Husband).  

 

“…it’s an emotional rollercoaster…cause it’s got its ups and downs…” (Olivia, Wife).  

 

Mia (mother) further elaborated: 

 



THE LIVED EXPERIENCES OF CAREGIVERS  36 

“…a caregiver also needs to be a plan maker like if plan A is not working, what is plan 

B and plan C. Ya it’s very unpredictable ya, you never know – you never say ya that’s 

the way it’s going to be…”  

 

The lived experiences of the caregivers in this study coincide with findings by Spiers 

et al. (2023), who found that the cyclical nature of BD places caregivers under significant 

strain. Furthermore, the unpredictable nature of BD may leave caregivers feeling like they are 

on a rollercoaster ride, and that they are no longer in control of what is going on around them 

(Bauer et al., 2012; Mark, 2013). Lekoadi et al. (2019) state that the behaviours displayed by 

BD patients place the caregiver under additional stress. The unpredictability and lack of control 

experienced by caregivers creates what Schultz and Sherwood (2008) term a chronic stress 

experience. If the caregiver is unable to manage the demands placed on them and the emotions 

brought about by the caregiving experience, they will not be able to cope (Lazarus & Folkman, 

1984). In order to minimise the implications of caregiving, it is vital for the caregiver to have 

social support and implement adaptive coping strategies.    

 

For the two mothers in the study, being the caregiver of their child with BD elicits a 

wide range of emotions:  

 

“…anger and sadness, hopefulness umm… hopelessness and then after, then the next 

morning when you wake up you are hopeful again…by evening you are hopeless 

again...” (Mia, Mother).  

 



THE LIVED EXPERIENCES OF CAREGIVERS  37 

“It has just been very stressful…there has been a lot of fear…there's hope and then 

there's hopelessness, there's fighting and then there's I’ll give up – this is how it's going 

to be so it's very push and pull – very radical, it’s very up down…” (Sophie, Mother).  

 

This is consistent with findings by Morrison and Stomski (2017), as well as Ntsayagae 

et al. (2019), who noted that being a caregiver for a patient with BD elicits feelings of fear, 

helplessness, frustration, and anguish. When viewing Sophie’s (mother) response in isolation, 

it can be argued that this mother is utilising an emotion-focused coping strategy, as described 

by Chakrabarti and Gill (2002). In order to balance her emotional response to the up-and-down 

nature of the patient’s behaviour, the mother is inclined to want to give up. Although 

maladaptive, the need to give up may be this mother’s way of attempting to regain some control 

over her life, and maintain a sense of stability, albeit falsified.  

 

4.3.1.1. Anger and frustration 

Feelings of anger and frustration towards the patient were described by the participants 

in the study. The root of the anger was twofold. Firstly, caregivers were angry that they had to 

take on additional responsibilities. Secondly, the caregivers were angry because the patient put 

them in a situation that required sacrifices in their lives:  

 

“…he was usually looking basically after himself, making himself a sandwich, um get 

himself cooldrink or whatever… I needed to do it now for him… and sometimes I felt 

like cross but he’s still big enough to do it himself but he just didn’t want to do it himself 

anymore...” (Mia, Mother).  

 



THE LIVED EXPERIENCES OF CAREGIVERS  38 

“…sometimes yes, I do get…angry at my husband for putting us in this situation 

because you know I can’t do the things that I want to do…” (Olivia, Wife).  

 

Rahmani et al. (2018) state that caregivers who have different relationships with the 

patient will have different perspectives and experiences. The anger towards the patient in this 

study is no exception, where the mother caregiver expressed anger at the need to take on more 

responsibilities. Ntsayagae et al. (2019) found that caregivers in their study experienced 

frustration when they had to take on additional responsibilities, as this meant that the caregiver 

had to combine their existing responsibilities with the requirements of caring for the patient.  

When considering the anger towards the patient from the perspective of the wife-

caregiver, it can be seen that she expresses her anger towards the sacrifices she has had to make 

and blames her husband (and the condition) for this. Research has shown that spousal 

caregivers often sacrifice things that give them pleasure in life (Granek et al., 2016), and this 

may lead to feelings of anger among wife-caregivers (Rahmani et al., 2018).   

Interestingly, research has shown that, compared to spousal caregivers, parents 

experience higher levels of satisfaction and engagement in their role as a caregiver (Ayalew et 

al., 2019). On the other hand, it has been found that being a female, and therefore a mother-

caregiver, increases the implications faced by the caregiver, especially because the patient is 

largely dependent on them (Alzahrani et al., 2017; Andershed et al., 2017). The researcher is 

of the opinion that being a mother-caregiver and being a wife-caregiver may in fact have many 

overlapping, and similar levels of caregiver implications, and as such, this area should be 

investigated further.  

 

 

 



THE LIVED EXPERIENCES OF CAREGIVERS  39 

4.3.1.2. Psychological distress 

Although psychological distress was not common among the participants, this sub-

theme is being presented as literature shows that the caregiving process often causes severe 

emotional distress in the caregiver’s life. This is especially true for female caregivers. Two 

female-caregivers in the study experience psychological distress as a result of caring for their 

loved ones:  

 

“…I must say now after about…seven months we…are on the right track but ya severe 

emotional distress...at a stage it was so distressful and I realised I need something, I 

need to go and see a doctor otherwise I won’t be able to survive…” (Mia, Mother).  

 

“…I’ve been on edge…trying to you know figure things out and make sure he doesn’t 

have that episode again…I’m always scared that it’s going to happen again…” (Olivia, 

Wife).  

 

In line with the literature, a high demand for care by the patient (Fekadu et al., 2019; 

Koutra et al., 2016), and feelings of being on stand-by (Mulud & McCarthy, 2017; von Kardorff 

et al., 2016) contribute to the caregiver experiencing psychological distress. Hegde et al. (2019) 

found that caregiver distress and the symptom-severity of the patient’s disorder are related. It 

can be argued that these two caregivers experience significant amounts of psychological 

distress due to the fact that the patient’s manic episode was both recent, and the first episode 

experienced by the caregiver. Although Olivia’s husband was diagnosed with BD long before 

they got married, he had remained stable throughout their marriage. The participant noted that 

she “actually forgot that my husband had bipolar till he had his first manic episode that I 

experienced last year”. In line with literature, psychological implications and distress are 



THE LIVED EXPERIENCES OF CAREGIVERS  40 

particularly high among those caregivers witnessing psychosis/mania for the first time (Poon 

et al., 2018). 

When viewed through the lens of the stress-coping model, the negative appraisal of 

their situation as a result of the demands placed on them puts these caregivers in a vulnerable 

position (Lazarus & Folkman, 1984). Without implementing adaptive coping strategies, these 

caregivers will likely develop psychological or physical illnesses (Szmukler et al., 1996).  

 

4.3.1.3. Neglected needs and managing competing needs 

It has been established that being a caregiver means neglecting one’s own needs and 

prioritising the patient. As such, the researcher explored this to understand how caregivers 

describe their neglected needs. However, three caregivers presented a different perspective, 

explaining that life has to carry on: 

 

“…life is normal, ah it carries on…” (Liam, Husband).  

 

“…I needed to continue with what I’m good at ya so… ya… you need to continue with 

your life. You need to find that middle way – how to still go on with your life and to be 

a caregiver for your bipolar patient...” (Mia, Mother).  

 

“…Umm to be a caregiver, well, I understand that life will not be normal...your life 

will never be the same as someone else's but that’s okay, it doesn't have to be umm you 

just have to remind yourself it has…to become your normality…and then you get used 

to it. You know your life's not gonna be worse than before, you just do a few extra 

things…” (Adam, Fiancé).  

 



THE LIVED EXPERIENCES OF CAREGIVERS  41 

Research has shown that being the caregiver of a patient with BD means that one has 

to balance competing needs and overcome feelings of being needed and rejected 

simultaneously (Lewis, 2015; van den Heuvel et al., 2018). Contrary to what has been found 

in the literature (Graneheim & Åström, 2016; Shamsaei et al., 2015), some caregivers in this 

study did not struggle to find a balance between being a caregiver and maintaining their 

autonomy.  

When considering Liam (husband) and Adam (fiancé), the researcher would argue that 

the possible reason for the positive adaptation is gender-related. It is well-cited in literature that 

men adapt to the caregiving role better than women do (Ayalew et al., 2019; Cassidy et al., 

2014; Rahmani et al., 2018; Scott, 2013; Séoud & Ducharme, 2015). This will be discussed in 

in detail in the Gender Differences subtheme. Men often tend to be more resilient, allowing 

them to cope with their role as a caregiver in a more effective way (Mulud & McCarthy, 2017).  

For Mia (mother), the researcher would argue that the participant is attempting to regain 

a sense of normality and control over her life. She had previously expressed how her life has 

been overthrown by her son’s diagnosis. She also expressed how her son makes it known to 

her when he is unhappy with something she does, leaving her feeling somewhat worthless. By 

continuing to go to work and doing what brings her a sense of fulfilment, the researcher would 

argue that the caregiver is employing a positive, adaptive coping strategy. The act of keeping 

busy is described as a positive, and common, coping strategy used by caregivers of patients 

with BD (Hogan & John-Langba, 2016). It is important for caregivers to still feel a sense of 

worth in their life outside of their role as a caregiver. By teaching them ways to actively seek 

that fulfilment, it may be possible to lessen the implications faced by caregivers.   

 



THE LIVED EXPERIENCES OF CAREGIVERS  42 

While some participants were able to strike a balance between being a caregiver and 

maintaining a sense of autonomy, it is noteworthy that five of the caregivers spoke about 

neglecting their needs without probing:  

 

“…It feels as if you can’t continue with what you want – what is urgent in your life 

now, he comes first…I want to say I became more of a servant to him…” (Mia, Mother).  

 

“…There was actually a period that was very strained…I was under a lot of pressure 

and well, your tank is empty, you've got nothing to give anybody else…you sort of get 

to a place where you are on autopilot…so you lose complete self-awareness. You don't 

even know what's going on in yourself with you know random even small needs…” 

(Sophie, Mother).  

 

As expressed by Mia (mother) and Sophie (mother), it is common for caregivers of 

patients with BD to sacrifice themselves and put the patient’s needs above their own 

(Graneheim & Åström, 2016; Van der Walt & Carbonatto, 2019). However, what is interesting 

among these findings is that the two mothers in the study described great self-sacrifice. While 

there is contradicting research on the caregiving experience from a parent’s perspective, the 

researcher would argue that for these mothers, self-sacrifice was experienced due to the sudden, 

increased dependence on them. As presented previously, Mia (mother) expressed that her son 

requires her to perform basic tasks again, which he could do in the past. Sophie (mother) noted 

that she had to relocate back to Johannesburg to care for her daughter, further stating that “…it's 

sort of like having a child again…”.  

The researcher is of the opinion that the mothers in the study may be struggling to adjust 

to their role. Although the maternal instinct is to care for one’s child, both patients are at the 



THE LIVED EXPERIENCES OF CAREGIVERS  43 

age (14 and 22 years old) where the parent-child relationship would have matured to allow the 

child to become independent (Louw & Louw, 2014). BD is unpredictable, and neither of these 

mothers know how much longer they will be the primary caregivers for their children. 

Resultantly, this may cause increased levels of anxiety, as caregivers worry about the future of 

the patient, and who is going to look after them when the caregiver no longer has the ability to 

(Borowiecka-Karpiuk et al., 2014). 

 

Neglected needs were different for Olivia (wife). For this caregiver, neglected needs 

took on the form of self-sacrifice in order to create a seemingly perfect environment for her 

husband:  

 

“…so I have to make sure everything is perfect for my husband so things don’t you 

know get out of control again. So, that is a challenge for me to keep the peace, to make 

sure he’s okay, to make sure he doesn’t get upset…”  

 

Graneheim and Åström (2016) found that caregivers take on additional responsibilities 

by creating positive life situations for the patient in order to prevent relapses. The researchers 

found that caregivers placed considerable pressure on themselves, often blaming themselves if 

the patient relapses. This literature is substantiated by Olivia’s (wife) need to make sure 

everything is perfect for her husband so that he does not have another manic episode. Rahmani 

et al. (2018) claimed that the addition of the caregiving role places considerable pressure on 

women, especially when they already fulfil multiple other roles (such as being a mother and 

keeping house). Olivia (wife) described a sense of guilt when she did things for herself, which 

is in line with the neglect that wives in Rahmani et al.’s (2018) study experienced.  



THE LIVED EXPERIENCES OF CAREGIVERS  44 

Based on the above, it is important for spousal-caregivers, wives in particular, to learn 

how to effectively cope with the