PALLIATIVE CARE FOR CHILDREN WITH CANCER: PRIMARY CAREGIVERS’ PERSPECTIVES A report on a research study presented to The Department of Social Work School of Human and Community Development Faculty of Humanities University of the Witwatersrand In partial fulfilment of requirements for the degree of Bachelor of Social Work By DAPHNEY MATAGA January, 2018 DECLARATION I solemnly declare that this work is my own and no plagiarism whatsoever was done. Every source used has been acknowledged and authors of such work have been referenced in this research report. Signature______________________________________________________________________ Date__________________________________________________________________________ ACKNOWLEDGEMENTS I would like to recognise the following people who supported me during this study and helped make it possible: The Almighty God for being a source of strength throughout the process of this study Dr. Edmarie Pretorius, for her supervision, support, encouragement and guidance throughout the process of this study. To all the participants for being able to share their experiences and allow me to understand their daily lives – without you this report would not have been possible. Professor Janet Poole, thank you for allowing me to undertake the study in the Paediatric Haematology-Oncology Unit at Charlotte Maxeke Johannesburg Academic Hospital. To all my friends who helped me throughout this year, thank you for being a source of strength and support. To Rayeni Lebea, thank you for supporting me and for all the advice and help throughout the year. To my mom Esther Modike, my siblings Selaelo and Pontsho Mataga and nephew Ashley Mataga, thank you for your continuous support and encouragement. Abstract Palliative care plays an important role in improving quality of life for people and family members affected by life-threatening illness. The primary aims of the study were to explore the perspectives of primary caregivers on palliative care and establish the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. The research study employed a qualitative approach which was exploratory and descriptive in nature and a case study design was used. The unit of analysis was ten primary caregivers of the children diagnosed with childhood cancer and receiving palliative care in the Pediatric Hematology and Oncology unit at Charlotte Maxeke Johannesburg Academic Hospital. Purposive sampling, a type of non-probability sampling was employed to select primary caregivers of a child with childhood cancer. A semi-structured interview schedule, with mainly open-ended questions was used, to guide the conversation and capture in depth responses from participants. Thematic analysis was employed to analyse collected data. The study revealed that caregivers are not well informed about palliative care and what it entails. The study showed that participants saw their role as giving the basic assistance such as bathing, feeding and also providing both physical and emotional support to the patient. It was evident that this gave them satisfaction as it allowed them to be involved in the care of their children. The study also noted that participants used religion as means of coping. Most participants included prayer as a source of strength and perseverance in their caregiving activities. In addition, the study also found that most participants are not aware of the professional services available for them and their children to ensure their psychological wellbeing. During palliative care of a patient diagnosed with childhood cancer it is important that professionals attend to the psychosocial wellbeing of the caregivers as it can negatively impact on the patient’s emotional wellbeing. It is thus anticipated that the findings of this study will help in assisting social workers in understanding how better to meet caregivers’ psychosocial needs. Keywords: Paediatric Palliative care, childhood cancer, primary caregivers, beliefs, coping strategies. TABLE OF CONTENTS Declaration .................................................................................................................................. i Acknowledgements ..................................................................................................................... ii Abstract ....................................................................................................................................... iii CHAPTER 1…………………………………………………………………………………….1 INTRODUCTION TO THE STUDY…………………………….............................................1 1.1. Introduction…………………………………………………………………………………..1 1.2. Problem Statement and Rationale of the study…………………………………...…………..1 1.3. Research questions……………………………………………………………...……………2 1.4. Research aim…………………………………………………………………...…………….2 1.5. Research objectives………………………………………………………………...............2-3 1.6. Overview of research approach, design and methodology………………………...................3 1.7. Definition of key concepts…………………………………………………...……………….3 1.8. Organisation of the report……………………………………………………….....................4 CHAPTER 2……………………………………………………………………………………..5 THEORETICAL FRAMEWORK AND LITERATURE REVIEW…………………………5 2.1. Introduction…………………………………………………………………………………...5 2.2. Theoretical framework underpinning the study…………………………………………….5-6 2.3. Palliative care……………………………………………………………………………….6-7 2.4. The prevalence of cancer among children………………………………………………….7-8 2.5. The role of cultural beliefs and customs and spirituality in palliative care…………………8-9 2.6. The role of the inter-disciplinary team in palliative care………………………..……………9 2.7. Summary of the chapter…………………………………………………………………...9-10 CHAPTER 3…………………………………………………………………………………….11 RESEARCH METHODOLOGY.……………………………………………………………..11 3.1. Introduction…………………………………………………………………….....................11 3.2. Research Approach and Design……………………………………………………………..11 3.3. Population, Sample and Sampling procedures…………………………….………………..12 3.4. Research instrumentation……………………………………………………........................12 3.5. Pre-testing………………………………………………………………...............................13 3.6. Method of data Collection…………………………………………………………………..13 3.7. Method of data analysis…………………………………………………………............ 13-14 3.8. Trustworthiness of the study……………………………………………………………..14-15 3.9. Ethical considerations…………………………………………………… ……………. 15-16 3.10. Limitations of the study……………………………………………………………………16 3.11. Summary of the chapter…………………………………………………………………...16 CHAPTER 4…………………………………………………………………………………… 17 PRESENTATION AND DISCUSSION OF FINDINGS………...…………………………...17 4.1. Introduction………………………………………………………………………………… 17 4.2. Demographic profile of participants……………………………………………............. 17-18 4.3. Discussion of results……………………………………………………………………..18-27 4.4. Summary of chapter……………………………………………………………....................27 CHAPTER 5…………………………………………………………………………………… 28 MAIN FINDINGS, CONCLUSIONS AND RECOMMENDATIONS…………………….. 28 5.1. Introduction…………………………………………………………………………...……..28 5.2. Summary of main findings………………………………………………………...…….28-30 5.3. Conclusions………………………………………………………………….........................30 5.4. Recommendations…………………..…………………………………………………...30-31 REFERENCES……………………………………………………………………………..32-34 APPENDICES………………………………………………………………………………….35 APPENDIX A: Interview Schedule………………………………………………………..35-36 APPENDIX B: Participant Information Sheet……………………………………………..37-38 APPENDIX C: Participant Consent Form…………………………………………………….39 APPENDIX D: Audio-taping Consent Form…………………………………………………40 APPENDIX E: Ethics Clearance Certificate………………………………………………….41 vi APPENDIX F: Permission letter from CMJAH………………………………………………42 CHAPTER 1 INTRODUCTION 1.1. INTRODUCTION This chapter provides the problem statement and rationale for the study, the aims of the study conducted, overview of the research methodology used in the study, definitions of several terms utilised in the study, and, lastly, the organisation of the report 1.2. PROBLEM STATEMENT AND RATIONALE FOR THE STUDY Death is faced by every human on earth. Palliative care plays an important role in improving quality of life for people and family members affected by life-threatening illness. It is estimated that currently less than half of children with cancer in South Africa are diagnosed, and many of those who are diagnosed are in advanced stage of illness (CHOC Childhood Cancer Foundation, 2017). With many of those diagnosed at the advanced stage of cancer, they undergo palliative treatment due to no curative treatment. The above does not mean that early detection of childhood cancer guarantees cure, as not all cancer patients can be cured regardless of the earlier diagnosis and improved of methods of treatment. The diagnosis has a psychological impact on both the patient and the family. Families of patients play an important role in the way death is perceived and managed by the patient. This study seeks to explore the roles that primary caregivers play in the process of palliative care and how they cope and the influence of cultural beliefs in this process. The effect of children with life threatening illness on the people around them, their families and on those that care for these children can be devastating and life-changing. Paediatric palliative care aims to provide holistic and multifaceted care. However, it often cannot stretch to meet the needs of the multitudes who require assistance and support (Tick, 2007), due to the broad diversity of service users. The researcher was doing her internship at the research site as a student social worker. During contacts with caregivers of children on palliative care she observed that caregivers responded differently to the palliative treatment of their children and there were several factors that influenced their response to the process of their children dying. Furthermore, the researcher also found that one of the caregivers still had hope that her child would be fine and the treatment will work. During interactions with caregivers the researcher realised that some caregivers prefer not to tell the child that they are dying and she was curious why this is the case and what informs this decision. The researcher therefore developed an interest in exploring the perspectives of caregivers on palliative care and establish the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. The researcher will also look at how spirituality and culture informs the roles and perspective. There is limited focus on paediatric palliative care throughout the world and South Africa is no different. Social work practitioners have the potential to make meaningful contributions to improving palliative and end-of-life care because of their work in “varied and divergent practice settings across the lifespan, their role in addressing mental health needs, grief and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society” (Kramer, Christ, Bern-Klug, & Francoeur, 2005, p. 418). In South Africa, most of the studies conducted in palliative care were conducted with adult patients and less was conducted with paediatrics especially in oncology. Research into these experiences is important both for the expansion of knowledge and for the practical gain of assisting social workers in understanding how better to meet caregiver’s psychosocial needs – an important priority (Kluger, 2009). 1.3. RESEARCH QUESTIONS · What are primary caregivers’ comprehensions of palliative care? · How do primary caregivers perceive their roles in palliative care of a child with cancer? · What beliefs shape the views of primary caregivers about their roles in palliative care of a child with cancer? · How do primary care givers cope with palliative care of a child with cancer? 1.4. PRIMARY AIMS OF THE STUDY The primary aims of the study were to explore the perspectives of primary caregivers on palliative care and establish the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. 1.5. THE SECONDARY OBJECTIVES ARE · To establish how primary caregivers, understand palliative care · To determine the opinions of primary caregivers about the roles they are fulfilling in palliative care of a child with cancer · To explore the beliefs and customs of primary care givers and how these influence the roles they fulfil in palliative care of a child with cancer · To establish what kinds of coping mechanisms, do primary caregivers employ to deal with the challenges in palliative care of a child with cancer. 1.6. OVERVIEW OF RESEARCH APPROACH, DESIGN AND METHODOLOGY A detailed description of the research methodology employed by the researcher is presented in Chapter 3. The ethical aspects pertinent to the study and the measures that were taken to ensure the trustworthiness of the data will also be presented in Chapter 3. The following discussion is a synoptic account of the research methodology adopted for the study. The research study employed a qualitative approach which was exploratory and descriptive in nature and a case study design was used. The unit of analysis was ten primary caregivers of the children diagnosed with childhood cancer and receiving palliative care in the Pediatric Hematology and Oncology unit at Charlotte Maxeke Johannesburg Academic Hospital. Purposive sampling, a type of non-probability sampling was employed to select primary caregivers of a child with childhood cancer and on palliative care with or without curative treatment for the cancer. A semi-structured interview schedule, with mainly open-ended questions will be used, to guide the conversation and capture in depth responses from participants. Thematic content analysis was employed to analyze collected data. 1.7. DEFINITION OF CONCEPTS Paediatric Palliative care The World Health Organisation (2004) defines palliative care for children as “a special, albeit closely related field to adult palliative care which includes: the active, total care of the child’s body, mind and spirit, and involves giving support to the family”. Primary caregivers Haines (2008, p. 210) state “primary caregiver is anyone who is responsible for the caring and raising of babies and young children; they can be fathers, mothers, grandparents, uncles, aunts, brothers, sisters or community members”. Terminal cancer It refers to “an advanced stage when curative treatment is no longer useful, the disease is assessed to be incurable and the patient’s condition is progressively deteriorating” (World Health Organisation, 2004). 1.8. ORGANISATION OF THE RESEARCH REPORT This report is divided into five chapters. Chapter 1 provides an overall introduction to the statement of the problem and rationale, the main aim and objectives of the study, research questions, definitions of concepts, as well as the methodology applied. Chapter 2 provides an overview of the literature review and the theoretical framework. Chapter 3 focuses on the methodology, research design, data collection method and analysis. Chapter 4 presents the findings of the semi-structured face to face interviews conducted. The main findings, recommendations of the study and a conclusion on the findings is highlighted in Chapter 5. CHAPTER 2 LITERATURE REVIEW & THEORETICAL FRAMEWORK(S) 2.1. INTRODUCTION This section will begin by providing a theoretical framework that underpins the study, a brief description of palliative care, which will include a discussion on the history of palliative care, definition of paediatric palliative care. Furthermore, it discusses the prevalence of childhood cancer. More importantly the section will look at the role of cultural beliefs and customs and spirituality in caring for the dying child and coping with knowing the child is dying. Lastly, the section will look at the roles of the multidisciplinary team in palliative care. 2.2. THEORETICAL FRAMEWORKS UNDERPINNING THE STUDY The biopsychosocial model is the model that underpinned this research project. This model will help the researcher take in consideration the interplay between biological, psychological and social factors in the caregivers’ experiences. Lakhan (2006) describes the biopsychosocial model as a broad view that attributes disease outcome to the intricate, variable interaction between Biological factors (genetics, biochemical), psychological factors (mood, personality, behaviour) and social factors (cultural, familial, socioeconomic and medical). From this perspective, Ebert & Kerns (2010, p. 16) argues that “diversity in illness expression (which includes its severity, duration, and consequences for the individual) is accounted for the interrelationships among biological changes, psychological status, and the social and cultural contexts; all of these variables shape the person’s perceptions and response to illness”. The biopsychosocial model was used to understand the impact of an illness on the psychological and emotional state of the primary caregiver. The study further investigated how the social and cultural context influences health, in terms of coping and the significance of the role that primary caregivers play in the health of the ill child. The research study focused mainly on the psychosocial and social aspects; however, it explored how the health (biological aspect) of the child impacts on the caregiver’s functioning and how the caregiver responded. Attachment theory will be used in conjunction with the biopsychosocial model. Primary caregivers are emotionally invested in their child’s wellbeing; they create an intense bond or attachment. Worden (2002, p. 7) states that “Bowlby’s attachment theory provides a way to conceptualise the tendency in human beings to make strong affectional bonds with others and a way to understand the strong emotional reaction that occurs when those bonds are threatened or broken”. The above may assist in understanding the psychosocial impact of the process of dying of a child and the caregiver’s perspective on palliative care. Bowlby (1969) wrote that attachment bonds have four defining features: proximity maintenance (desiring physical closeness to one’s attachment figure); separation distress; safe haven (retreating to one’s caregiver when one senses danger); and secure base (in order to explore knowing that your attachment figure will protect you from danger). The defining feature will be helpful in terms of the hope for that the ill child will be cured and assist in understanding why some caregivers do not disclose the news of dying to their child. 2.3. PALLIATIVE CARE The concept of palliative care originated out of the hospice philosophy. Clark (2007) argues that Hospice institutions developed in response to the gaps in care regarding chronically ill and dying patients. ‘Palliate’, the Latin origin for palliation, refers to alleviation or care without curing (Clark, 2007). In 1982, the first children’s hospice center opened in England (Foster, 2007). It seems that specialized palliative and paediatric palliative units were only introduced in South Africa in the 1980’s. Despite growth in hospice initiatives, researchers have only just begun to explore the unique aspects of paediatric palliative care. Palliative care has always been a part of the care of children. The World Health Organisation (2004) defines palliative care for children as “a special, albeit closely related field to adult palliative care which includes: the active, total care of the child’s body, mind and spirit, and involves giving support to the family”. The World Health Organization (2004) further describes that it is the process whereby “health providers must evaluate and alleviate a child's physical, psychological, and social distress”; and that “effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited”. It can be provided in tertiary care facilities, in community health centres and even in children’s [own] homes”. The above is the most widely used definition of paediatric palliative care. Palliative care essentially begins when illness is diagnosed and continues regardless of whether a child/patient receives treatment directed at the disease. According to Osse, Vernooij-Dassen, Schadé, & Grol (2005, p. 1) “Palliative care is given in addition to cancer treatment and not all cancer patients can be cured regardless of the earlier diagnosis and improved of methods of treatment”. The authors further state that the early diagnosis and improved of methods of treatment has the benefit for the patients to live for longer period and when there is no chance of cure, professional care focus is on quality of life. This explains why palliative care is given mostly when there is no chance of cure. However, this study will look at palliative care at different stages of the disease progression but with a specific focus on terminal cancer. When the medical decision has been made that no curative options remain for a child, certain decision-making discussions (e.g., allow natural death, terminal care, withdrawal of support) are probably to occur, and palliative care becomes the focus (Foster, Lafond, Reggio, & Hinds, 2010). According to the World Health Organization (2017) Palliative care affirms life and regards dying as a normal process; it neither hastens nor postpones death. It sets out to preserve the best possible quality of life until death. 2.4. THE PREVALENCE OF CANCER AMONG CHILDREN Cancer is a generic term for a large group of diseases that can affect any part of the body. Other terms used are malignant tumours and neoplasms. One defining feature of cancer is the rapid creation of abnormal cells that grow beyond their usual boundaries, and which can then invade adjoining parts of the body and spread to other organs, the latter process is referred to as metastasizing. Metastases are a major cause of death from cancer (World Health Organisation, 2004). Alberts (1993, as cited in Mathebula, 2009, p. 6) argues that cancer “is the result of abnormalities of cells in human species caused by viral infection and cancer cells has the ability to multiply and invade other normal cells resulting in further spread of the disease”. Terminal cancer refers to “an advanced stage when curative treatment is no longer useful, the disease is assessed to be incurable and the patient’s condition is progressively deteriorating” (World Health Organisation, 2004). CHOC childhood cancer foundation SA stresses that the cancers that affect the children are not life-style related as in the case with many adult cancers. They most often occur in the developing cells like bone marrow, blood, kidneys and nervous system tissues. According to the most recent South African Children’s Cancer Study Group (SACCSG) registry statistics, for 2009 to 2013, the five most common childhood cancers in South Africa are leukaemia, followed by lymphoma (tumours that begin in the lymph glands), then brain tumours, nephroblastomas, or Wilms tumours – cancer of the kidneys - and then soft tissue sarcomas, which are tumours that begin in the connective tissue. The reality in South Africa is that less than half of expected cases are being diagnosed and of those diagnosed, the majority present in advanced stages. Even though tertiary academic hospitals have paediatric oncology units providing specialised treatment, many children present too late for successful treatment outcomes. Some of the challenges to improving survival rates include limited resources, late presentation, co-morbid infections and malnutrition. When many children present too late for successful treatment the only option is to put them on palliation treatment which will help the child live a more comfortable life. 2.5. THE ROLE OF CULTURAL BELIEFS AND CUSTOMS AND SPIRITUALITY IN PALLIATIVE CARE Haines (2008, p. 210) state “primary caregiver is anyone who is responsible for the caring and raising of babies and young children; they can be fathers, mothers, grandparents, uncles, aunts, brothers, sisters or community members”. In this study, a primary caregiver will be anyone who is the primary carer of the child during hospitalisation. Childhood cancer pervades the life of the entire family unit and the primary caregiver is the one who mostly gets affected as they live with the child 24/7. Caregiving is demanding, consuming caregiver’s emotional and physical energy as well as time. Kovacs, Bellin and Fauri (2006, p. 20) states that “Instruction and guidance, social supports, personal coping mechanisms, and positive beliefs about cultural values related to caregiving may help reduce the related stressors”. While some degree of stress is normal given the physical and emotional intensity and demands of the caregiving role, each person’s level of stress and capacity to cope depends on a variety of factors (Kovacs et.al., 2006). Primary caregivers may experience stress owing to emotional, physical, or financial pressures as well as strain of family relationships. The core principles of palliative care may not adequately represent the values of different cultures. Foster, Lafond, Reggio and Hinds (2010, p. 209) argues that “Family considerations in paediatric palliative care involves an understanding and appreciation for how culture affects children with cancer and their families’ thoughts, feelings, hopes, fears, and illness experience”. Hence, Liben, Papadatou, and Wolfe (2008) emphasises that for the interdisciplinary team to be able to meet the cultural and spiritual differences with regards to disclosure, decision-making, and quality of life issues, they should consult patients as well as their caregivers about their preferences and beliefs before informing them with bad news and critical decisions concerning palliative care. In addition to cultural considerations, Forster et al. (2010, p. 210) argues that “spiritual care is a key component to serving children living with cancer and their loves ones. Spirituality is defined as how persons seek and express meaning and purpose and involves their connectedness to the moment, to self, to others, and to the sacred. The ability to be in a relationship of ”sacred trust” with children and their families in paediatric palliative care is the foundation of competent clinical practice and meaningful spiritual care. 2.6. THE ROLE OF THE INTER-DISCIPLINARY TEAM IN PALLIATIVE CARE Paediatric palliative care further requires an interdisciplinary team in order to ensure that all of the child’s needs are met and creates a situation where team members provide patients with as much quality of life as possible (World Health Organisation, 2004; ACT, 2009). The interdisciplinary team try to provide both care and support to patients and their families. The interdisciplinary team comprises of paediatric oncologists and haematologists, professional paediatric oncology nursing sisters and a psychosocial team. The paediatric oncologists play a crucial role in interdisciplinary palliative care. They must be competent in general medicine, competent in control of pain and other symptoms, and must also be familiar with the principles of management of the patient’s disease (World Health Organisation, 2007). Furthermore, the World Health Organisation (2007) emphasises that the nurse is the team member who will typically have the greatest contact with the patient and assist the patient to cope with the effects of advancing disease. The paediatric haematology-oncology unit works hand in hand with CHOC Childhood Cancer Foundation. CHOC childhood cancer foundation aims to support children with cancer and life-threatening blood disorders, and their families; facilitating effective treatment. Therefore, CHOC has a psychosocial team consisting of; a Social worker, Social auxiliary worker and a bereavement counsellor that provide counselling to the caregivers and children in palliative care. The psychosocial team aims to ease the burden on parents with children that have cancer by providing access to relevant, accurate information, as well as emotional and practical support. The role of the social worker or psychologist is to help the family and patient deal with the personal and social problems of illness, as well as to provide support during the progression of the disease and the bereavement process if the patient is at the end of life. 2.7. SUMMARY OF THE CHAPTER Chapter 2 discussed the theoretical framework(s) underpinning the study, literature pertaining to palliative care and childhood cancer. This chapter analysed the definition of palliative care, the prevalence of cancer among children, the role of cultural beliefs and customs and spirituality in palliative care, the role of the inter-disciplinary team in palliative care. In Chapter 3 the research methods will be presented and discussed. CHAPTER 3 RESEARCH METHODOLOGY 3.1. INTRODUCTION The research conducted focused on exploring the perspectives of primary caregivers on palliative care and establishing the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. The chapter presents research questions and discusses the research methodology used in the study and specifically discusses the research approach and design study population and sampling, instrumentation, including pre-testing, data collection techniques, data analysis, trustworthiness, ethical considerations and the conclusion of the chapter. 3.2. RESEARCH APPROACH AND DESIGN The research study employed a qualitative approach which was exploratory and descriptive in nature. De Vos, Strydom, Fouché and Delport (2005, p.74) states that a “qualitative approach is a method that elicits participant’s account of meaning, experience or perceptions and it also produces descriptive data in a participant’s own written or spoken words and involves identifying the participant’s beliefs and values that underlie the phenomena”. Given the inductive nature of wanting to explore perspectives of participants, qualitative research method was highly appropriate for this study because it enabled the researcher to captivate the reality of the social world from an emic perspective and observe, describe and document aspects of situation as it naturally. This study used a case study design. This design is appropriate because the researcher seeks to provide an in-depth understanding of the participant in their current environment. Creswell (2012, p. 73) defines case study research as “a qualitative approach in which the investigator explores a bound system (a case) or multiple bounded systems (cases) over time, through detailed, in depth data collection involving multiple sources of information, and reports a case description and case-based themes”. The researcher explored several cases over time for this study. 3.3. POPULATION, SAMPLE AND SAMPLING PROCEDURES The population that the researcher targeted for the study were the caregivers of the children diagnosed with childhood cancer and receiving palliative care in the Pediatric Hematology Oncology unit situated in Charlotte Maxeke Johannesburg Academic Hospital. Purposive sampling, a type of non-probability sampling was employed. This was used because, using purposive sampling will help explain the phenomenon of interest even when a small number of cases are used. Considering, that it was a challenge for the researcher to get participants that have children with terminal cancer. The researcher then focused on caregivers of children diagnosed with cancer and is at any stage of the disease progression. Purposive sampling was useful for this study because according to (Strydom & Delport, 2011, p. 392) in purposive sampling “a particular case is chosen because it illustrates some features or process that is of interest for a particular study”. Therefore, in this study ten participants were selected. Only individuals who have complete day to day responsibility for the child who is on palliative care due to childhood cancer were selected for the study. The researcher asked for patients’ files to check the diagnosis of the patients and thereafter approached the identified patients’ caregivers. The participants were recruited through face to face encounters, where the researcher introduced herself and explained her research interest to the participants. The researcher further explained all the information that the participants will need to make informed decisions whether to take part or not in the study. Participation information sheet (see Appendix B) as well as consent forms (see Appendix C and D) containing all the necessary information regarding the study and taking part in the study was distributed to the identified possible participants. 3.4. RESEARCH INSTRUMENTATION A semi-structured interview schedule, with mainly open-ended questions was used, to guide the conversation and capture in depth responses from participants (Appendix A). This research instrumentation allowed the researcher to adapt her questions and probes during the interview according to the way the participant responded. According to De Vos, Strydom, Fouché and Delport (2002), “semi-structured interview schedules provide for a loose structure consisting of open-ended questions that define the area to be explored, at least initially, and from which the interviewer or interviewee may diverge in order to pursue an idea in more detail”. 3.5. PRE-TESTING The method of data collection was pre-tested a few weeks prior the official interviews using one caregiver to ensure that the questions are clear and facilitate the information required sufficiently. Rubin and Babbie (2011, p. 226) argue “no matter how carefully researchers design a data collection instrument such as a questionnaire, there is always the possibility indeed the certainty of error. They will always make some mistake: an ambiguous question, a question that people cannot answer”. Having done the interview, the researcher asked the interviewee for input in terms of the way the questions were asked and the terms used. The interviewee provided feedback that was useful in amending the interview schedule. In addition, pre-testing provided an indication of how long it would take to go through the interview schedule. After noting the challenges in the interview schedule, the researcher thus adjusted the semi-structured interview schedule accordingly. 3.6. METHOD OF DATA COLLECTION The researcher employed face-to-face interviews to gather rich data from the participants. This gave both the researcher and the participants an opportunity to clarify issues, to probe and to ask questions where necessary. Mclare (2011, p. 20) highlights that this method of data collection “provides for sharing of individual information, afford understanding and description of people’s personal experiences of the phenomena being researched and the researcher almost always identifies contextual and setting factors as they relate to the phenomenon of interest”. This method of data collection was most relevant for the study as it allowed the researcher to probe more and discover ideas and suggestions that are not necessarily anticipated. The interviews were conducted over a period of two months and each interview took approximately 45 minutes. The interviews took place in the cubicles in which the participants’ children were in, this was mostly in isolated cubicles and two interviews took place in a cubicle whereby there were three other patients. With the permission of participants, the researcher used tape recorder to record the interviews. This allowed the researcher to capture accurately the information obtained through the interviews. 3.7. METHOD OF DATA ANALYSIS Thematic analysis was employed to analyze the collected data. Braun and Clarke (2006, p. 4) define thematic analysis technique as “a method for identifying, analyzing and reporting patterns (themes) within data”. This method enabled the researcher to summarize data by counting various aspects of the content, and it enabled the researcher to be more objective when evaluating the data from the research. Braun and Clarke (2006) describe six phases of thematic analysis. Firstly, the researcher began by transcribing the data that was gathered during the audio-taped interviews with participants. The researcher then read the data and listened to the audio tapes to ensure accuracy and also become familiar with the content. Braun and Clarke (2006) argue that transcription is not a waste tie as it informs the early stages of analysis. Transcribing provided the researcher with an opportunity to carefully listen to the audio-taped interviews and familiarize herself. Secondly, a list of all possible codes was generated, in order to identify important features of the data and to assess the data in a meaningful way (Braun & Clarke, 2006). Thirdly, these codes were then used to search for themes. This was done by using the initial codes (from the previous step) to discover potential themes and relationships between these codes, as well as to classify significant main themes. Fourthly, after themes were coded to satisfaction, the themes were then defined and further refined and Braun and Clarke (2006) explains that by defining and refining themes a researcher need to identify the essence of what each theme is about and determining what aspect of the data each theme captures. Fifth, following this the researcher examined whether all the themes appeared to form a coherent and connected picture, as well as whether these themes corresponded with the raw data. Braun and Clarke (2006) argue that this allows the researcher to construct a thematic map of the data, as well as further refine the significant themes of this study. Finally, a research report was produced, containing all the concise and relevant themes (Braun & Clarke, 2006). 3.8. TRUSTWORTHINESS OF THE STUDY The researcher strived to achieve trustworthiness by conducting the following measures: credibility, transferability, dependability and confirmability. Credibility in a qualitative research refers to the degree to which the information and data investigation are authentic and constant. Credibility is equivalent to internal validity as it looks at the research findings and compares it to the reality in the environment (Shenton, 2004). Credibility was enhanced by ensuring that the research is driven by ethical considerations and conducted in professional manner. Iterative questioning was used and the same questions were asked in a different manner whilst interviewing the participants. Transferability refers to external validity allowing the study to be applicable to other situations or wider populations (Shenton, 2004). The researcher enhanced transferability by using purposive sampling and the description of eligibility criteria and if the same sampling method and criteria were to be applied in a different setting or larger population the same results would be achieved. Dependability refers to the reliability of the data over time (Shenton, 2004). Dependability will be enhanced through including sections devoted to; the research design and its implementation, operational detail of data gathering and a reflective appraisal of the project. Lastly, confirmability, referring to two or more independent individuals being in agreement of the accuracy, relevance and meaning of the data (Shenton, 2004) was enhanced by coding the data, having the data audited by an independent coder which in this case will be the supervisor of the study and establishing and audit trail. 3.9. ETHICAL CONSIDERATIONS The following ethical considerations will be employed by the researcher throughout the study; · Voluntary participation Participants were provided with participant information sheet explaining the aim and purpose of this study, in order to inform them of their rights as participants prior to being interviewed. It should be a participant’s choice to take part in the research (Babbie et al., 2007). In addition, the researcher explained to the participants what the research was about. · Informed consent Participants were further provided with an informed consent form, so that they could volunteer to be part of the study or not, with the understanding that there would be no negative consequences reflecting on them should they choose not to participate in the study. Hence, Johnson and Christensen (2013, p. 148) state that “Obtaining informed consent of participants is a vital component of conducting ethical research because this component recognizes the autonomy of research participants”. Therefore, none of the caregivers were forced to become part of the study, they consented to participating and being taped recorderd (see Appendix C and D) · Confidentiality Confidentiality “refers to an agreement with the research investigators about what can be done with the information obtained about a research participant” (Johnson & Christensen, 2013, p. 142). The data that will be collected from the participants will remain confidential until the study is completed and the findings will be presented to the hospital and to the participants. · Anonymity The researcher will not disclose identifiable information about participants and will use codes instead of names to maintain confidentiality. The demographic data sheets were numbered sequentially and no name appeared on these sheets. · Ensuring no harm Johnson and Christensen (2013, p. 133) state “in all that a researcher does, they are compelled to be always honest, trustworthy and never jeopardize the welfare of others including doing no harm”. The potential risk related to this study is psychological and therefore, the participants were notified in the beginning that they would be referred for professional counselling if it is needed, free of charge. · Permission from the research site Permission from the hospital and unit from which the children of the participants receive treatment from, was requested and granted fully (see Appendix F). Ethical clearance was requested from Human Research Ethics Committee (Medical) of the University of the Witwatersrand and was approved and the protocol number is: M170732 (see Appendix E). 3.10. LIMITATIONS OF THE STUDY One major limitation for the study was the small population sample, which is expected when conducting a qualitative research study. The Paediatric Haematology Oncology has a limited number of children on palliative care, thus preventing the possibility of a larger sample. Thus, the generalisability of this study may be limited. 3.11. SUMMARY OF THE CHAPTER This chapter highlighted the study methodology, the study population and sampling as well as instrumentation. The chapter discussed pre-testing, data collection and data analysis methods employed. It also examined the trustworthiness of the study focusing on credibility, transferability, dependability and confirmability. The chapter also discussed the ethical considerations taken during the research. In chapter 4, results and findings of the study will be discussed. CHAPTER 4 PRESENTATION & DISCUSSION OF THE FINDINGS 4.1. INTRODUCTION This chapter presents the demographic profile of participants and findings of the study on the experiences of primary caregivers who are caring for children with childhood cancer will be presented according to themes identified. The thematic analysis is aligned to the study objectives while the findings bring out the emerging themes out of the research questions dealt with. The researcher draws from existing literature in the interpretation of results. The profile of the participants is given below. The main themes identified were caregivers’ understanding of palliative care, caregivers’ experiences of the process of care in the hospital, their role as caregivers of the patients, the role of Spirituality in caring for an ill child, coping with a child’s cancer diagnosis, support systems caregivers utilise during the child’s illness and the perceived role of the inter-disciplinary team. In the discussion, the findings will be related to the secondary objectives of the research study. 4.2. DEMOGRAPHIC PROFILE This set of data was intended to describe demographic variables of the sample and to assess if the data had any influence on the research findings. The demographic data consisted of age, gender, race, marital status, ethnicity and diagnosis of the patient. All ten caregivers that participated in the study were female. This does not necessarily mean there are no male caregivers; however, there are more female caregivers that care for the ill patients at the hospital fulltime while the males care for the remaining children at home. Ten of the participants were black, and only one was white. The large number of black participants was only coincidental as there was more black children hospitalised at the time interviews were conducted. Four of the participants were married and six were single. Table 4.1 Demographic profile of the participants (N=10) Participant No. Age Gender Race Relationship with patient Diagnosis of patient Marital status 1 37 Female Black Mother Brain tumour Married 2 37 Female White Mother Nephroblastoma Married 3 34 Female Black Mother Nephroblastoma Married 4 19 Female Black Aunt Hepatoblastoma Single 5 32 Female Black Mother Large cell lymphoma single 6 22 Female Black None ALL Single 7 37 Female Black Mother ALL Married 8 29 Female Black Mother Nephroblastoma Single 9 28 Female Black Mother Nephroblastoma Single 10 32 Female Black Mother ALL Single 4.3. DISCUSSION OF FINDINGS As data was being processed and analysed, themes were identified from the semi-structured interviews. Below themes will be discussed. 4.3.1. Caregivers’ understanding of palliative care. Participants did not show understanding of the palliative care concept. This is because the concept is widely used when the child is in the end of life care. And parents tend to listen selectively when they are told that their children will die. Most parents are more concerned with the health of their children not the kind of care the child is receiving. For example, participant 4 said: “I only know that they should give her medication so that the pain becomes less. I don’t really know much about it.” Participant 5 mentioned: “They have explained however, I cannot really say I understood. The term was just foreign for me. But I do understand a little bit about the treatment and the side effects and they will provide medication to treat the side effects”. Participant 6 noted: “I don’t really understand much about the treatment she will she receiving”. Participant 7 said: “Yes, the doctors have explained everything to me and I understand that the treatment will take about three years. Somethings I might not have heard because sometimes it is all too much to take it”. According to participants they understood the treatment that their children will be undergoing. However, they did not clearly understand the term palliative care. Palliative care is a term that is highly associated with hospice care and death and dying, and it is less used in among doctor and caregiver discussions in the hospital. According to Osse, Vernooij-Dassen, Schadé, & Grol (2005, p. 1) “Palliative care is given in addition to cancer treatment and not all cancer patients can be cured regardless of the earlier diagnosis and improved of methods of treatment”. Although, some caregivers have heard the doctors using the term they have expressed that they have no idea what the term meant. 4.3.2. Caregivers’ experiences of the process of care in the hospital. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited (World Health Organization, 2004). Different members of the team receive different forms of training and carry out different duties, however they are working towards one goal which is to address the needs of the patients and their families. Most of the participants stated that the process of care in the paediatric haematology-oncology ward is fairly good. However, most participants had mixed feelings about the quality of care provided in the ward. For example, participant 2 said: “I have got mixed feelings about the in-hospital care. Doctors are great and nurses are generally alright. But there are certain factors that has to do with the nurses. It’s got nothing to do with the social workers, the social workers that I have met are fantastic. If you have got a complaint they always sort it out very quickly. They are great with the kids, especially Vera who is here with us, she is very good with my daughter and with that I have had a very good experience”. Participant 5 mentioned: “I am still new to the hospital as my son was first diagnosed at Polokwane provincial hospital. I then moved him here since it is closer to me. I don’t think the care is very good, the nurses make noise and can be very inconsiderate. We are under a lot of pressure as it is, because of the cancer diagnosis and sometimes you just need quiet but the nurses scream at us and make noise when we are sleeping. But the doctors are very good, they have treated me well so far”. Participant 6 noted: “It is good, but if you see a problem in the baby they take time to come to you and check the baby”. Participant 9 mentioned: “They are good they take care of the patient nicely. I don’t have complaints”. These semi-structured interviews were conducted face to face and the researcher observed that some caregivers were uncomfortable answering this question due to fear of being victimised. Even having explained that the information was anonymous and confidential, it was visible that caregivers were omitting information about their experiences in terms of the process if care in the ward. Most of those that complained, complained because of the nurses and feeling avoided by the medical staff in the ward. 4.3.3. Their role as caregivers of the patients in the in-hospital ward Uren (2009, p. 58) states “caregiving is often emphasised as the process by which family members provide care for another family member that is suffering from an illness”. The participants’ conceptualisation of caregiving emphasises the feminine role of caring and nurturing. This role is based upon an emotional connection between a mother and her child. Different to other hospitals, the paediatric haematology-oncology unit at Charlotte Maxeke Johannesburg Academic hospital allows the child to be admitted with elder person who will assist the child with day to day activities. And in this case the informal caregiver is a parent, a relative and when there is no one to assist the parents from the family a caregiver is hired to assist the patient whilst at the hospital. The participants had this to share in regards with the role they play in caring for the ill patient. Participant 1 said: “I give her medicine when the doctors say this medicine give your daughter. I bath her, feed her, that is why I am here”. Participant 7 noted: “My role is to look after him, cook for him, cuddle him, give him love and play with him”. Participant 5 indicated: “I am just here to support him, look after him and when he is in pain I am there and I am making sure he is eating well. Which is why I asked for him to be transferred so that I can be closer to him”. Participant 2 mentioned: “Basically, just to look after her, do the basic stuff just she needs. To protect her; to make sure that she does not get treated unfairly; that when medical care is given promptly and in time and nothing more serious happens to her and doesn’t worsens. Basically, just to make sure that she is comfortable which is not always easy, being mother and a daughter, we sometimes don’t agree but most of the time we get along very well”. Most of the patients involved in the study are very young and required help in various aspects of their life. Even for those that were a bit older they still required help as the tumours in the body as well treatment complications made it difficult to do things on their own. The participants caring for children with childhood cancers played a great role in ensuring that the children’s basic needs are being met. The caregivers pointed out that it’s their responsibility to ensure that the children they are caring for are comfortable and treated fairly in the hospital ward. 4.3.4. Role of Spirituality in caring for an ill child The third objective was to explore the beliefs and customs of primary care givers and how these influence the roles they fulfil in palliative care of a child diagnosed with cancer. Kovacs, Bellin and Fauri (2006, p. 20) states that “Instruction and guidance, social supports, personal coping mechanisms, and positive beliefs about cultural values related to caregiving may help reduce the related stressors”. In responses given by participants in relation to this objective, it was noted that participants viewed the patients’ illness in a religious framework. Participants felt that illness was a way to move closer to God, and that God did not cause illness, but rather supported patients through their suffering. Participants who had strong religious beliefs found much comfort in their own religious beliefs. Religiosity seemed to function, at some points, suffering easier to understand and easier to manage. Participant 2 said: “Basically, as a Christian I believe that she will be healed. I believe that is the reason Jesus Christ died on the cross is to say that our kids are safe and to take away pain and heal us. And a lot of other reasons. With being a Christian I mean, we are actually full on Christians; we are in church, we are in the board, we have so many people that are praying for us and not only here also overseas, I have friends that are praying for us. And just to keep us strong, if we did not have our beliefs we would not be strong enough to get through this”. However, from other participants’ responses, the participants used religions as a way to avoid the reality they were facing. Participants spoke about how God is in charge and Him being the one who allowed their children to be ill and he did it for a purpose. They believe that God will heal their children. They also believe that the doctors can only do so much and the rest is up to God. For example, Participant 3 said: “I do believe that with God everything is possible. Even before this surgery, I was like telling them that no I do not want surgery. Let me travel back so that I can meet my pastor, because I believe that I am with God and everything is possible. It is not easy to tell a mother that we are going to remove your child’s kidney. So, for me to put myself together was not easy for me as my husband is not here, it just me and the kid. But at the end of the day I decided that… she convinced me that she can even live with one. That some people have one, even normal people used to come to donate to save other people’s lives. After that I decided okay it is fine, because to me she is too young. But everything is possible with God and if he wants it that way it is fine”. Participant 8 noted: “I pray a lot, and I believe that God will do something for me. I praise him and thank him, because it helps me so much with a lot of things. Imagine the day the doctors told me my child was going to die. But because I believe in God my child is still alive. Prayer does all for me and I can also see that my child is recovering even though it is slow”. When the participant was informed by the doctors that her son has three months to live she expressed that she was angry because they have no right to say that as they are not God. 4.3.5. Coping with a cancer diagnosis These themes links to the fourth objective which was to establish what kinds of coping mechanisms, do primary caregivers employ to deal with the challenges in palliative care of a child diagnosed with cancer. This objective is important in as it gave the researcher a better understanding of the coping strategies and sources of support caregivers employ in the care continuum of children with childhood cancer from the primary caregivers’ view point. According to Munch (2007), coping refers to the implementation of certain behaviours internally in response to difficult situations. Coping is an individualised and contextualised activity which can never be generalised. Most participants expressed that they are not coping. Their reasons for not coping are different, mostly the reason is being away from home and family and the hospital environment whereby they witness deaths of other patients. Participant 2 said: “It is my up and down, it is not easy. There is a lot of things that you think and feel and cannot express. For basic reasons, obviously; you do not want to do it in front of your child. But with the support system that we have, we are okay. Me and my husband we are both religious people and so my daughter as well she knows where her salvation comes from. She knows that there is Jesus and he died for her. She is coping well and I do understand that there is a lot of underlying things that she has not spoken about. But we will get there and she will talk about it. She does talk to me when something comes up in her mind. But generally, she does not want to talk too much, she just wants to get through this. But physically she is okay, well mentally I think she is okay. She does get angry and heartsore but she knows that she can talk to us at any time and we will try to and answer as best as we can”. Participant 3 mentioned: “It has not been easy for me because my family is not here. My husband and children are in Nigeria. It is just me and her, but my brother is here as well”. Participant 4 indicated: “To be honest I am always stressed and now I am terrified as well. The other day children, no two weeks ago three children died three days in a row. And just knowing that this one has had cancer twice just terrifies me. She has had two different types of cancer and now they said it seems like she is developing some type of blood disorder as well. At first, they thought it was the chemotherapy side effects but now they said it is not. They also said that it might disappear as soon as she is done with chemotherapy. To hear about the kids dying here now and there is just too much for me I am not coping”. Caregivers witnessing suffering of other patients is one of the primary causes of stress overload which results in caregivers being unable to cope. Caregivers have to deal with the emotional and financial strain that comes with their child’s cancer diagnosis as well as secondary traumatic stress that comes from witnessing the deaths of other child patients. 4.3.6. Support systems The literature shows that caregivers are in need of protection from physical and emotional harm. They need to have some form of support in order to help them get through the challenges and stresses they experience as they care for the patients. Responses from the interviews indicate that the caregivers draw a lot of support from various sources in order to deal with the challenges they experience at the hospital. The most common sources of support were families, friends, church members, partners and organisations that offer support to children diagnosed with childhood cancers. Participant 2 said: “Well there is a lot of organisations that uhm… her school has got a welfare organization of their own and people have raised money to support us with driving up and down, with food and all our general expenses. It is not like a million rand that they have raised but it helps. From various friends and family, we have also received financial help and we have got people that help us with driving around, if my husband cannot bring us to hospital then they bring us to hospital. So, friends, family and church members all try what they can to help financially. I have a little daughter and everybody is helping her as well, if my husband can’t do her hair properly they do it for her”. Participant 4 noted: “My friends they always come and visit us here, the family and my cousins are doing the most for me and the child. We support each other as we are the ones that are mostly affected. I stay here with the child every day and she is her daughter so we both lose some sleep at night sometimes. It has been support, support, support, the problem is that we still have to be here and being here is what stresses me. And I freak out a lot so the stuff members have also been a great help as they come check us and ask if we are well. Talking really helps me a lot and I am quite talkative so if it has been a hard, I speak out”. Support is essential in the care continuum as it helps to minimise the effects of burden in the care process. Participants receives different forms of support from their support system. When a caregiver has to stay at the hospital with the ill child they have to leave their children at home as well as their jobs which can lead to a financial strain on them. They become dependent on their support system for financial support and other forms of support. When the researcher asked the participants about the gaps they perceive in their support system, the majority of the participants said that they do not perceive an as their support system tries their best to be there for them. However, participant 10 mentioned: “A lot of the parents need support financially as they stay for longer periods at the hospital and it can put a financial strain on the family. So, if they could provide more financial support it would be better”. 4.3.7. Inter-disciplinary team. Participants had different opinions when it comes to professional support services offered in the ward. Some expressed dissatisfaction with regards to the services provided to them while others expressed that they are satisfied with services provided in the ward. There are several factors that contributed to the caregivers’ experiences with support services in the ward. Some of the factors are how long has the patient being hospitalised, disease progression, as well as knowledge about services provided by different medical practitioners. For example, participant 2 noted: “It is just that in general in hospital itself is just to have a more compassionate outlook towards the kids and the mothers that are staying here. In general, especially with nurse they have this… It is understandable because they see the kids every day and the heartache every day and that hardened their hearts. So, they don’t really get involved in, because these kids in and out and when one passes away it is not easy for them and they don’t want to get too involved”. Participant 7 said: “They provide us with emotional support. They also give us strength as our circumstances are draining. So, they come and talk to us about what is happening with the baby and what is going to happen about the baby. Basically, the social worker’s role is to support us”. Some participants have expressed that social workers in the ward have greatly helped. Participant 7 captured that in her response. However, some participants have no idea what the role of a social worker is. Three participants did not even know who the social worker in the ward is. Participant 5 indicated: “Honestly, I have no idea. It is not every day where you receive social work services and when I arrived here they did not explain to me what the role of the social worker was. So, I don’t even know with what issues I am supposed to go to her”. Some of the participants complained about the treatment they receive from the nurses. One participant mentioned that the nurses’ compassion is very low which may be due to the trauma they experience from watching the patients suffer. Furthermore, participants complained of doctors that were insensitive to their circumstances. For example, participant 8 mentioned: “Everything was okay, the problem was the doctors they don’t know how to speak to us as parents. The doctor just took me to a corner and told me face to face that my child is going to die. No one can tell me that my child is going to die they are not God. If they couldn’t help me they should have said that we are stopping this and this we cannot help you. They just told me that my child is going to die and I must take him and go have a happy moment with him. So, I was like angry”. Some participants expressed distrust in the team treating their child. Participant 10 clearly captured this by saying: And another thing they do not involve me in the treating process. Now they have been giving my child chemotherapy but they never made me sign anything or at least tell me about it. Participant 1 noted: “But for one thing ne, when the doctor comes here and ask if my daughter is still shaking and if I say yes, they give her a tube which looks like a drip. That one is start Fatima shaking more and that is why nowadays I stopped saying my daughter is shaking because I don’t want when they give Fatima is start shaking more”. The above statement shows that the participant, does not trust the doctor to help her child. She lost faith in the doctor as her daughter has not been getting better after her last encounter with the same doctor. Paediatric palliative care requires an interdisciplinary team in order to ensure that all of the child’s needs are met and creates a situation where team members provide patients with as much quality of life as possible (World Health Organisation, 2004; ACT, 2009). The study reveals that the interdisciplinary team in the ward has not been effective in meeting the family of the patient’s needs. 4.4. SUMMARY OF CHAPTER This chapter discussed and presented the results of the study according to the objectives that were listed in chapter 3. The results were presented in relation to the existing body of literature on pediatric palliative care. The chapter also provided a brief overview of the participants’ profiles. The next chapter presents a summary of the main findings, conclusions and recommendations in respect to theory, practice and future research. CHAPTER 5 SUMMARY OF MAIN FINDINGS, CONCLUSIONS AND RECOMMENDATIONS 5.1. INTRODUCTION Chapter 4 dealt with the analysis and interpretation of data collected using semi-structured interviews. This chapter will present a summary of the research findings from the empirical investigation on the perspectives of primary caregivers on palliative care and the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. The main findings of the study are presented in this chapter through integrating the main aim and the objectives of the study. The recommendations will serve as guiding principles to assist paediatric haematology-oncology units providing palliative care to children diagnosed with childhood cancers on how to improve their support services offered to the caregivers and family members of the ill patients. 5.2. MAIN FINDINGS The primary aims of the study were to explore the perspectives of primary caregivers on palliative care and establish the specific roles they fulfil and coping strategies they employ in palliative care of a child with cancer. A detailed discussion of the objectives of the research with reference to the main findings is presented. Objective 1: To establish how primary caregivers, understand palliative care. The first objective was to establish how primary caregivers, understand palliative care. The main findings under this objective was that caregivers of children undergoing childhood cancer treatment in Charlotte Maxeke Johannesburg Academic hospital had no idea what palliative care was. They do know that their children receive treatment for the disease as well as the pain which may be a consequence of the cancer or the treatment, however they have no idea what that care is called. When asked about the treatment their children are receiving, most participants showed greater understanding of what will take place during the treatment. Furthermore, most participants expressed satisfaction with regards to how the medical practitioners care for the children and for them. However, some showed dissatisfaction with how nurses treat them and behave in the ward. Objective 2: To determine the opinions of primary caregivers about the roles they are fulfilling in palliative care of a child with cancer. The second objective was to determine the opinions of primary caregivers about the roles they are fulfilling in palliative are of a child with cancer. Participants identified the following activities as constituting the care they provide to children with cancer: provision of medication, carrying the children to the bathroom to relieve themselves as some are too young or are either unable to walk due to pain, feeding the children, bathing them and ensuring that they get the best medical care. The study revealed that participants were happy to engage in the caregiving activities. Most hospitals do not allow parents to stay with the children at the hospital and parents felt like this is an opportunity for them to care for their children as long as they want and it gave them satisfaction to know that they can be with their children at all times. Objective 3: To explore the beliefs and customs of primary care givers and how these influence the roles they fulfil in palliative care of a child with cancer. The third objective was to explore the beliefs and customs of primary caregivers and how these influence the roles they fulfil in palliative care of a child with cancer. The main findings under this objective was that all the participants were religious, one had a Muslim faith while the rest believed in Christianity. They all shared the same sentiments as they explained that it is through their religion that they are able to take it one day at a time. Most of the caregivers believed in a higher being and included prayer as a source of strength and perseverance in their caregiving tasks. Religion was noted to play an important part in supporting and improving the coping mechanisms of the primary carers caring for children diagnosed with childhood cancers. Objective 4: To establish what kinds of coping mechanisms, do primary caregivers employ to deal with the challenges in palliative care of a child with cancer. The fourth objective was to establish the kinds of coping mechanisms primary caregivers employ to deal with the challenges they face during palliative care of a child with cancer. All participants expressed that they are not coping as each day brings new challenges for them. The participants stress levels increased as a result of disease progression of the child; when the child’s disease progressed, caregivers became more stressed and experienced feelings of anger towards the doctors; another factor is financial implications of having to care for a child in the hospital, some caregivers had to leave their jobs to come and care for their children and that meant loss of income for them; another factors was lack of knowledge about the professional support services that are available for them to ensure their psychological wellbeing. Participants expressed that they would have loved to speak to the social worker so that she could help them navigate their new reality and they needed to receive counselling just to let out their emotions to the counsellors. The role of counselling is done by social workers in the ward and however their availability to the caregivers in the ward was minimal and some caregivers had no idea that there is a social worker dedicated to the ward. 5.3. CONCLUSIONS The conclusions that can be drawn from the study is that as much as the caregivers’ understanding of what palliative care is limited, most caregivers understand the treatment their children are receiving although they do not understand the type of care that is received. During palliative care of a patient diagnosed with childhood cancer it is important that professionals attend to the psychosocial wellbeing of the caregivers as it can negatively impact on the patient’s emotional wellbeing. Some participants expressed how they try not to cry in front of their children when it is all too hard to handle. However, this is tough for the caregivers and they have no idea how to handle this. The caregivers’ experiences of the process of care is generally well, as much as they have experienced dissatisfaction, they were mostly pleased with certain aspects of the care they are receiving at the hospital. The caregiving activities that caregivers engage in provides satisfaction for them, as it allows the caregivers to be involved in the care of their children. 5.4. RECOMMENDATIONS The following recommendations are made based on the primary data of the research collected. 5.4.1. Recommendations for the hospital · Keeping patients that are on end of life care in the same room as the children on curative treatment can be traumatic for everyone in the ward. The hospital should isolate children that are only receiving palliative care as part of end of life care. This is to avoid the trauma that comes with children dying in front of other patients as well caregivers. · The hospital should provide training to different professionals that are part of the interdisciplinary team involved in paediatric palliative care of children with childhood cancers. 5.4.2. Recommendations for paediatric oncology social workers · Social workers have the responsibility to inform clients about their role in the multi-disciplinary team involved paediatric palliative so that they can be aware of the services they can receive from the social worker. They also have the responsibility to ensure that all caregivers can access their services. · The social worker should provide de-briefing for both the caregivers and the patients when a child dies or when something traumatic happens in the ward. · The social worker should help caregivers form a peer support group whereby they can support each other. The social worker should equip caregivers with knowledge on how to deal with stressful situations. 5.4.3. Recommendations for further research · Due to the less number of participants who took part in the study, findings cannot be generalized to the greater population of caregivers of children on palliative care due to childhood cancer. Furthermore, due to the target population being caregivers of children who are in-patients and are allowed to stay at the hospital with the children, findings cannot be generalized to the greater population of caregivers of children on palliative due to a childhood cancer as most hospital do not allow caregivers to stay in the hospital with the children. Therefore, further research should perhaps make use of bigger samples from different hospital settings to allow for generalizations. · Future research must also focus on the interdisciplinary team involved in pediatric palliative care to get their views on caregivers’ experiences in terms of palliative care. References Association for Children's Palliative Care (ACT) (2009). Accessed on 11 June 2017 from http://www.act.org.uk/page.asp?section=56§ionTitle=ACT%27s+charters+for+children+and+families Bowlby, J. (1969). Attachment and loss, Vol. 1: Attachment. New York: Basic Books; & Hogarth Press. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. CHOC Childhood Cancer Foundation. (2017). Childhood Cancer awareness and early detection. Choc.org.za. Retrieved 11 June 2017, from http://www.choc.org.za/childhood-cancer/awareness-and-detection.html Clark, D. (2007). From margins to centre: a review of the history of palliative care in cancer. The lancet oncology, 8(5), 430-438. Creswell, J. W. (2013). Research design: Qualitative, quantitative, and mixed methods approaches. Sage publications. De Vos, A. S., Strydom, H., Fouché, C.B. & Delport, C.S.L. (2005). Research at grass roots: For the social sciences and human professions. (3rd ed). Pretoria. Van Schaik Publishers. De Vos, A.S, Strydom, H., Fouché, C.B. & Delport, C.S.L. (2002). Research at grass roots for the social sciences and human professions. (2nd ed). Pretoria. Van Schaik Publishers. Ebert, M. H., & Kerns, R. D. (Eds.). (2010). Behavioral and psychopharmacologic pain management. Cambridge University Press. Foster, T. L., Lafond, D. A., Reggio, C., & Hinds, P. S. (2010, November). Paediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life. In Seminars in oncology nursing (Vol. 26, No. 4, pp. 205-221). WB Saunders. Johnson, R. B., & Christensen, L. (2008). Educational research: Quantitative, Qualitative, and Mixed approaches. USA: Sage Publications. Kluger, J. (2009). The biology of belief. Time, 23 February 2009, p.32-37. Kovacs, P. J., Bellin, M. H., & Fauri, D. P. (2006). Family-centered care: a resource for social work in end-of-life and palliative care. Journal of social work in end-of-life & palliative care, 2(1), 13-27. Kramer, B. J., Christ, G. H., Bern-Klug, M., & Francoeur, R. B. (2005). A national agenda for social work research in palliative and end-of-life care. Journal of palliative medicine, 8(2), 418-431. Lakhan, S. E. (2006). The biopsychosocial model of health and illness. Liben, S., Papadatou, D., & Wolfe, J. (2008). Paediatric palliative care: challenges and emerging ideas. The Lancet, 371(9615), 852-864. Mathebula, R. (2009). The coping strategies and support systems of patients diagnosed with cancer at Charlotte Maxeke Johannesburg Academic Hospital (Thesis). University of the Witswaterand, Johannesburg, South Africa. Munch, S. (2007). Compassion fatigue: The costs of caring. Journal of Psychosomatic Obstetrics & Gynecology, 28, 65. Osse, B.; Vernooij-Dassen, M.; Schadé, E and Grol, R. (2005). The problems experienced by patients with cancer and their needs for palliative care. Supportive Care. Rubin, A and Babbie, E. (2010). Essential research methods for social work. New York: Brooks/Cole Cengage Learning. Shenton, A. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information Journal. 22(1), 61–75 Tick, E. (2007). Hospice and Hope in South Africa. Explore, 3, 407-409. Uren, S. (2009). An investigation into the emotional experience of caregiving (Thesis). University of the Witswaterand, Johannesburg, South Africa. Worden, J. W. (2008). Grief counselling and grief therapy: A handbook for the mental health practitioner. Springer Publishing Company. World Health Organisation. (2004). The Solid Facts. Palliative Care. Edited by Elizabeth Davies and Irene J. Higginson. 1-32. Europe. World Health Organization. (2007). Palliative care. Cancer. (2017). World Health Organization. Retrieved 5 July 2017, from http://www.who.int/mediacentre/factsheets/fs297/en/ APPENDICES Appendix A SEMI-STRUCTURED INTERVIEW SCHEDULE Title of the study: Palliative Care for Children with Cancer: Primary Caregivers’ Perspectives 1. Tell me more about yourself · Probing questions follow response 2. What is your relationship with the patient child? · Probing questions follow response 3. Share with me how it happened that the child was diagnosed with cancer and is now receiving palliative care? · Probing questions follow response 4. What is your understanding of palliative care/treatment? · Probing questions follow response 5. How do you perceive the role you play in palliative care of your child? · Probing questions follow response 6. In your view, what role do your cultural and spiritual beliefs and customs play in the palliative care of your child? · Probing questions follow response 7. This is likely to be a challenging time, tell me what strategies have you developed to cope? · Probing questions follow response 8. What kind of support do you obtain from whom during this time? · Probing questions follow response 9. During this time, you have interacted with different members of the multi-disciplinary or interdisciplinary team, drawing from the experiences you have had with the social worker, what would you say is the role of a social worker in palliative care? Appendix B PARTICIPANT INFORMATION SHEET Title of the study: Palliative Care for Children with Cancer: Primary Caregivers’ Perspectives My name is Daphney Mataga and I am currently in my final year of studying Social Work at the University of the Witwatersrand. As part of the requirement for the degree, I am conducting research regarding the perspectives of primary caregivers on palliative care for children with cancer with no curative treatment. It is hope that the information gathered could assist in providing recommendations on how social workers can improve their service provision. The outcome of this study could inform both knowledge base and practice of Social Work a hospital setting. I therefore, wish to invite you to participate in my study. If you accept my invitation, your participation would be entirely voluntary and you are free to withdraw at any time without penalty. There are no consequences or personal benefits of participating in this study. If you agree to take part, I would arrange to interview you at a time and place that is suitable for you. The interview will last approximately 30 minutes. If you choose to participate, you may withdraw from the study at any time and you may also refuse to answer any questions that you feel uncomfortable with answering. If you decide to participate, I will ask your permission to tape-record the interview. No one other than the researcher and the supervisor will have access to the tapes. The tapes and the interview schedules will be kept for two years following my publications or six years if no publications emanate from the study. Please be assured that your name and personal details will be kept confident and no identifying information will be included in the final research report. The results of the research may also be used for academic purposes and a summary of findings will be made available to participants on request. Should you experience any emotional discomfort during the interview, you may go see Ms. Vera Lepheana the social worker from CHOC childhood cancer in floor number 294 in the Paediatric Haematology-Oncology unit, free of charge. Please contact me on 076 380 4973 or 944239@students.wits.ac.za or my supervisor Dr. Edmarie Pretorius on 011 717 4476 or edmarie.pretorius@wits.ac.za if you have any questions regarding my study. If you have any concerns and complaints about the study, please contact Human Research Ethics Committee, Contact Details: Chairperson: peter.cleaton-jones1@wits.ac.za or the administrators: Ms. Zanele Ndlovu/Mr. Rhulani Mkansi/ Mr. Lebo Moeng Tel 0117172700/2656/1234/1252, HREC-Medical.ResearchOffice@wits.ac.za Thank you for taking the time to consider participating in the study Yours Sincerely Daphney Mataga Appendix C CONSENT FOR PARTICIPATING IN THE STUDY Title of the study: Palliative Care for Children with Cancer: Primary Caregivers’ Perspectives I hereby consent to participate in the research study. The purpose and procedures have been explained to me. I understand that: · My participation in this study is voluntary and I may withdraw from the study without being disadvantaged in any way. · I may choose not to answer any specific questions asked if I do not wish to do so. · There are no foreseeable benefits or particular risks associated with participation in this study. · My identity will be kept strictly confidential and any information that may identify me, will be removed from the interview transcript. · A copy of my interview transcript without any identifying information will be stored permanently in a locked cupboard and may be used for future research. · I understand that my responses will be used in the writing up of an honors project and may also be presented in conferences, books, journal articles or books. Name of Participant ____________________________________________________ Date _____________________________________________________ Signature _____________________________________________________ Appendix D CONSENT FOR AUDIO-TAPING OF THE INTERVIEW Title of the study: Palliative Care for Children with Cancer: Primary Caregivers’ Perspectives I hereby consent to tape recording of the interview. I understand that: · The recording will be stored in a secure (password locked computer) with restricted access to the researcher and the research supervisor. · The recording will be transcribed and any information that could identify me will be removed. · When the data analysis and write up of the research is complete, the audio recording of the interview will be kept for two years following any publications or for six years if no publications emanate from the study. · The transcript with all identifying information directly linked to me removed, will be stored permanently and may be used for future research. · Direct quotes from my interview, without information that could identify me may be cited in the research report or other write-ups of the research. Name __________________________________________________ Date ___________________________________________________ Signature _______________________________________________ Appendix E Appendix F image2.png image3.emf image4.emf image5.emf image1.png