THE MOTIVATIONS AND CHALLENGES OF CAREGIVERS IN CARING FOR PEOPLE LIVING WITH HIV AND AIDS

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CHAPTER THREE RESEARCH FINDINGS (PART ONE): THE MOTIVATIONS AND CHALLENGES OF CAREGIVERS IN CARING FOR PEOPLE LIVING WITH HIV AND AIDS (PLWHA)

INTRODUCTION

In Chapter Two of this report, the focus was on the qualitative research process, illuminating how it was applied when the fieldwork was carried out. In this chapter, I present the first part on the research findings that emerged from the processes of data collection, analysis and the consensus discussion that took place between the independent coder and myself which was facilitated by my supervisor. The results relate to the findings concerning the HBCGs’ motivations for and the challenges experienced when caring for people living with HIV and AIDS (PLWHA). In providing the context for the discussion, I will commence by presenting the participants’ demographic particulars. This will be followed by a tabulated account of the themes, sub-themes and categories that emerged from the process of data analysis. Storylines inform each of these divisions along with a literature control for comparison purposes.

THE DEMOGRAPHIC PARTICULARS OF THE PARTICIPANTS

This section heeds the call from Hennink et al. (2011:288) who urge researchers to make a description of the socio-cultural characteristics of the study population available (see Chapter Two: Section 2.4.4). Creswell’s (2016:110) suggests a table format for a detailed profile of the participants in their research work. Hennink et al., (2011:288) believe that socio-economic and cultural characteristics can be highlighted with data about the participants’ belief systems, behaviours and, norms that are relevant to a study’s topic. For Hlengwa (2011:77), the low- income status common among HBCGs, their educational and social status, gender and marital status too are some of the socio-economic and demographic factors associated with the physical and mental problems associated with the work of HBCGs. It is because of this scenario that the biographic profiles of the twenty-five HBCGs who took part in this study are presented in this chapter (see Table 3.1). The reader’s attention is drawn to their ages, social memberships, position in their households, their dependants, years of experience as an HBCG and their household income which, I believe may somehow have played a role in becoming involved in the care work of caring for PLWHA. The demographic particulars of the participants are presented in Table 3.1 together with some additional information on the next few accompanying pages.
As seen from their profile (Table 3.1), twenty-two of the HBCGs were females and three of the twenty-five participants were males. This trend corroborates with existing body of evidence on caregivers who care for PLWHA (Orner, 2006:237; Schneider, Hlophe & Van Rensburg, 2008; Marincowiz et al., 2004) which shows that a HBCG is generally a female. Although there may be inadequate empirical evidence to substantiate the reasons for most people in caregiving work to be women, it is generally known that caregiving is women’s work (Maes & Kalofonos, 2013:57; Akintola, 2005:6; Kohli et al. 2012). This opinion cannot be totally ruled out.
Participants were between the ages of twenty-seven and fifty-eight. On closer scrutiny eleven participants respectively were between the ages of twenty-seven and thirty-eight years of age and thirty-nine and forty-eight years of age and three participants fell within the age bracket of forty-nine to fifty-eight years of age. These demographics mirrored parts of literature that revealed variations in the ages of HBCGs. Orner31 quoted in Akintola’s (2008:121) study for instance found that the ages of HBCGs caring for PLWHA range between eighteen and sixty-nine. For Claxton-Oldfield, Jefferies, Fawcett and Wasylkiw‘s (2004:80) Canadian study, which focused on the motives for joining a palliative care volunteer programme among palliative caregivers, the ages of HBCGs who are generally involved in palliative care ranged from thirty-seven to thirty-eight. Among Schneider et al.’s (2008) participants who were HBCG caring for PLWHA in the Free State, South Africa, the ages of these CHCWs were between thirty-years and fifty years.
The racial classification revealed that two participants were Coloureds, one was white, one was an Indian and twenty-one were black. The studies consulted that focused on HBCGs caring for PLWHA (Cataldo, Kielmann, Kielmann, Mburu & Musheke, 2015; Kohli, Purohit, Karve, Bhalerao, Karvande, Rangan, Reddy, Paranjape & Sahay, 2012; Akintola, 2005:6; Akintola, 2010:3-4; Olang’o, Nyamongo & Aagaard-Hansen, 2010:233-234; Orner, 2006:237; Takasugi & Lee, 2012:840; Singh, Chaudoir, Escobar and Kalitchman (2011:841; Claxton-Oldfield et al.,2004:80-81; Schneider et al., 2008) do not account for racial classification among HBCGs. This observation seems to contribute to the dearth of literature in confirming or contrasting this demographic category.
Educationally the participants’ qualifications varied from Grade 9 to a tertiary qualification, with twelve of the participant having Grade twelve, seven of them had Grade ten, three Grade nine and two having Grade eleven. Among those with Grade twelve, one had a certificate in Basic First Aid and two had a basic counselling certificate. This data supports some of the existing works (Takasugi & Lee, 2012:840; Olang’o et al., 2010:234; Akintola, 2010:4) that claim that most of the HBCGs caring for PLWHA lacked a tertiary education. Unlike what I have found in this study, in Claxton-Oldfield et al.’s (2004:80-81) Canadian study of the motivations for palliative care volunteers, a university or college education was common.
The family composition revealed that three participants were staying alone, five stay with a partner and children, seventeen were either with their own children, parents and an extended family member or with parents and siblings.
The scenario painted in Akintola’s (2005:06) South African study focusing on the role of HBCGs in mitigating the burden of HIV and AIDS care in households and communities in KwaZulu-Natal (KZN), most HBCGs were unemployed. Being engaged in care work was also the case in my study with all the participants’ income coming only from a state social grants or a stipend. The stipend ranged from R800.00 to R2500.00. This variation was due to the governments’ funding of limited number of HBCGs, which was also the case among the AIDS volunteers who took part in Akintola’s (2010:3) South African study that explored the HBCGs’ motivations to care for PLWHA in KZN. Another study by Akintola, (2005:22) that focused on the HBCGs’ role in mitigating the burden of care in households and the communities in South Africa’s KZN revealed that a combination of stipend, the social grant and family members’ salaries resulted in a total family income of between R800.00 to R6180.00.
Generally the demographic profile of this study has mirrored what already exists in the body of literature (Claxton-Oldfield et al., 2004:80-81; Takasugi & Lee, 2012:840; Marincowitz et al., 2004; Steinitz, 2003; Olang’o et al., 2010:234) in that the caregiver involved in care work is a woman aged eighteen years and older; from any geographic area; affiliated to Christianity or other social groups outside the caregiving role; with either a basic or tertiary level of education; and from a poor economic background.

THEMES, SUB-THEMES AND CATEGORIES THAT EMERGED FROM DATA ANALYSIS

The process of data analysis and the outcome of consensus discussion between the independent coder and myself as facilitated by my supervisor resulted in nine themes, thirty sub-themes and fifty-five categories that are depicted in Table 3.2 overleaf. Themes One and Two will be presented in the remainder of this chapter, whilst the rest of the themes will be presented in the next chapter (Chapter Four) of this thesis.
Evolving from the above table, the first two themes with their related sub-themes and categories (where applicable) will now be presented. Quotations from the transcribed interviews will be used to fulfil various functions. As Sandelowski (1994:480) explains: “to provide evidence for some point the researcher wants to make [that is, to substantiate themes, sub-theme or categories], to illustrate or provide a more concrete example of an idea, to represent the thoughts, feelings or moods of the persons quoted or to provoke a response in the members of the audience for the research report”. The themes, sub-themes and categories, with the supporting storylines will be subjected to a literature control in view of comparing and/or contrasting the research findings.

THEME ONE: HBCGS’ ACCOUNTS OF THEIR MOTIVATION TO CARE FOR PLWHA

As discussed in Chapter One sub-section 1.2.1, the theory of informal caregiving dynamics holds that caregiving is a process through which the HBCG and the patient bring their experiences which somehow shape how they relate to one another during the caring process (Williams, 2007:379). Various aspects of the HBCGs’ experiences somehow played a role during this caring journey. Research on caregivers who are caring for PLWHA (Greenspan, McMahon, Chebet, Mpunga, Urassa & Winch, 2013; Maes & Kalofonos, 2013:55-56; Rödlach, 2009:430; Akintola, 2005:9; Ramirez-Valles & Brown, 2003:3) indicates that becoming a HBCG, like any other career can be prompted by a variety of reasons. In this study, HBCGs’ answers to a question concerning the HBCGs’ reasons for being involved in caregiving gave rise to three sub-themes and five categories which are discussed further below:

Sub-theme: HBCGs’ desire to help people as their motivation to care for PLWHA

Analysis of the participants’ answers to the question relating to what motivated their desire to be a caregiver gave rise to the sub-theme: HBCGs’ desire to help people which was filtered further and gave rise to two categories: a calling as a HBCG’s desire to care for PLWHA; and a passion as a HBCGs’ desire to care for PLWHA. These categories are further discussed below:
Calling as HBCGs’ desire to care for PLWHA
The participants’ responses to a question around their reasons for being involved in caring generally related to their belief in caring as a calling. Segwagwa, Paul, Jini and Dineo specifically mentioned that for them caring for PLWHAs was a calling and this belief had motivated them to do so.
Paul and Dineo were very specific in their explanation that for them caregiving was a calling from God. This is what Paul said: “I feel that I can fulfil my calling from God, to love other people… Because God says clearly in His Word, love God and love your neighbours”.
Just like Paul, Jini believed her work was a calling from God: “At that time I did not know anything about palliative care. But I developed the strength and decided to throw myself into it [referring to caring] because I thought it was a calling that God had for me”.
The motivation for caregiving as driven by God and religious values emerged in Akintola’s (2010:4) South African study focusing on the HBCGs’ motivations to care for PLWHA in KZN among caregivers. One of the participants in this mentioned study believed that she was an extension of God’s work on earth by using her hands to reach the sick. In a Zimbabwean study, which looked at the HBCGs’ motivations and concerns regarding HBC, Rödlach (2009:428) found that HBCGs were motivated by religious values as they believed that they are duty-bound to give hope and comfort to the sick and their families. In other words, for many HBCGs, the patient comes first.
Although Segwagwa did not explain where their calling came from, they also believed caring was a calling. Segwagwa shared her stance: “that is why I say is a calling to me. I develop this need to help these people (referring to PLWHA). Most of the time I like to put myself in the shoes of such people because I do not know what will happen to me in the future”.
Dineo spoke about caregiving as a calling along the following lines: “Yeah, I have been a caregiver since 2011. To me is a calling because I have been passionate to care for people regardless of whether they are orphans or any other person. Since then I got involved in caregiving until today”.
HBCGs’ believe in caring as a calling also emerged in another study of Akintola (2005:10) focusing on the role of HBCGs in mitigating the burden of HIV and AIDS care in households and communities among PLWHA in KZN among HIV and AIDS volunteers. In this group, altruistic reasons stood out as drivers of the HBCGs’ involvement in caring for PLWHA. These participants do not put reward as a priority, but the patient’s interests. As defined by Batson (2008:3), altruism refers to a “motivational state with the ultimate goal of increasing another’s welfare.” In other words, the care and support those who are sick and unable to care for themselves are first on the list of priorities people for those who are driven by altruism. They remain passionate to and are more concerned about the welfare of others.
Since altruism is closely linked to the concept of a calling, its attributes clearly clarify a finding of this study. Batson (2008) identifies it as a form of helping behaviour, not a motivation; having a concern for moral behaviour; and choosing internal rather than external rewards when acting to help another person. This means that the HBCG not only act as mandated by their respective organisations or because they receive some form of incentive, but because they want to help somebody. Altruism thus implies some elements of goodness and morality on part of the person who is actively rendering help and they are not just futile actions of an HBCG. Altruistic people are inclined to have peace of mind once they helped someone who needs care thus avoid the feeling of guilt and pain when they see a helpless patient suffering in pain (Batson, 2008). The HBCG who helps patients in pain experience a feeling of relief (Clary, Snyder & Ridge, 1992).
Jini and Paul’s view that HBC is a “calling from God” is confirmed in Schneider et al.’s (2008) work, in the Free State, who too have observed similar situations of religious identity and altruism among CHCWs in South Africa and elsewhere in Africa as drivers for their care work involvement. Close to the research theme for this study, is Akintola ‘s (2010:4) reflection of what was found among a group of South African volunteers in HIV and AIDS programmes catering for the needs of suffering of PLWHA patients in great need of care. For these HBCGs, the interests of their patients came first and theirs came last. They vowed that their patients would continue to be served regardless of whether they received any form of incentive or not. The participants were found to be highly passionate about caring for the sick and believed it was a calling for them and a self-fulfilling exercise (Akintola, 2010:4).
Tanzanian studies conducted by Greenspan et al. (2013) in Morogoro region and Pallangyo and Mayers’ (2009:486) in Dar es Salaam, looked at the motivations and experiences of CHCWs and informal caregivers caring for PLWHA. They expressed commitment to their work in the belief that their work was a calling. Similarly, Maasdorp (2011) found in a Zimbabwean study focusing on the challenges of staff support in hospice care that most of the dedicated HBCGs caring for PLWHA were mainly motivated by their belief in caring for the sick as a vocation rather than a job.
Passion as HBCGs’ desire to care for PLWHA
To care was part of Kgomo and Dineo’s nature and they were passionate about caring as the following quotations attest:
Kgomo stated: “For me, I have realised that I was born with this passion of caring for patients. That is why now I have this passion. Mostly we get patients who are very critical so I am used to it, I like it”.
Dineo’s sentiments corroborated with Malume who also has a passion for care work: “Before I can start working here, I had this passion to work with people especially the older people. And eventually my manager called me to ask me to come and work here and when I get here, I then started by working with young people. So, I can say is a kind of work that requires one to have passion. If you do not have passion you cannot cope because we encounter many challenges… this kind of job is not about education or anything else, it is about calling”.
The UNAIDS (2000:15) state that simple compassion for others who are suffering is a common motivation for caregivers who volunteer their services. What is expressed by these two participants in this study’s fieldwork is also highlighted by other HBCGs researchers (Akintola, 2010:5; Naidu, Sliep & Dageid, 2012:120). Their HBCGs also cite the love for caring for PLWHA as the reason to get involved in caring. Naidu et al. (2012:120) describe passionate HBCGs as the “compassionate doers” and “natural helpers” who were not only compassionate towards the sufferings of others, but also possessed the love for people from an early age and always acted to help those who were suffering. Similarly, Wringe, Cataldo, Stevenson and Fakoya (2010:5) highlight passion as one of the motivations for HBCGs to be involved in caring.
For HIV and AIDS caregivers who took part in Singh et al.’s (2011:842) South African cross-sectional survey of the impact of ongoing HBC programme on HBCGs in KZN, study of “stigma, burden, social support, and willingness to care among caregivers of PLWHA in home-based care South Africa” conducted in KZN, passion was demonstrated by more than a half of the HBCGs who continued to care for PLWHA; three quarters of them did so without any form of payment. In the US, a study in Chicago aiming to examine the activities, motives, consequences and deterrents to community involvement in caring for PLWHA among the Latino gay men caring for PLWHA, Ramirez-Valles and Brown (2003:2) found that HBCGs felt that working towards the goodness of others provided them with an identity of a caring and good person and elevated their sense of self-worth.
The sub-theme “HBCGs’ desire to help people as their motivation to care for PLWHA” resonates with Williams’ middle range theory of caregiving through the variable or principle of commitment as one of the dynamic forces that contributes towards the progression of the caregiving dyad (Williams, 2014:311; Williams, 2007:381). As defined by Williams (2014:317), commitment is an undertaking the caregiver gives the patient. Through this sub-theme, HBCGs’ reflected commitment as they believed that caring is not any other type of work, rather a calling for which one should exercise commitment by remaining passionate. Thus, commitment therefore became the force that enabled them to continue to care.

Sub-theme: HBCGs’ personal experiences as their motivations to care for PLWHA

From the middle range theory of caregiving dynamics, caregivers and their patients bring their past and present personal experiences to the fore and somehow shape their expectations about the future of their caring relationship (Williams, 2014:317). As explained in Chapter One (sub-section 1.2.1), the middle range theory of caregiving dynamics is founded on the premise that caregiving is a trajectory which evolves through the past and present experiences to include the reasons why HBCGs are involved in caregiving. Walters and Watts (2011:510) state that HBCGs’ motivation and decision to become involved in caring for the sick may result from own personal experiences. This was found to be one of the reasons in this study in which Mpshe, Dineo and Xhathula cited personal experiences from their own families as the reason for them deciding to offer their services by caring for PLWHA.
Regarding personal experiences prompting Mpshe to care for PLWHA she stated: ““For me it started when I was nursing my grandmother in 1998. So, it happened that she fell sick and there was no one to look after her and I was still in school by then. So, I could see her lying there feeling pain, wetting herself and there was no one who could look after her during the day. So, when I come back from school I was the one who would bath her and make sure that she remains clean. It happened that she passed on and after her death I developed this interest in the conditions of those people who are sick while in their homes… So, that is when I developed the skills to turn her around on my own because there was no one to help me…then told myself that I want to study nursing so that I can take care of the patients. And I wanted to be very different from other nurses that I used to meet because whenever I consult I would not get love, I would not get satisfaction at all whenever I consult. They would scold you, be impatient with you and not explain anything to you then when you leave the place you are more stressed…And my grandmother’s condition traumatised me as well because I was worried and wanted her to recover so that I can also focus on my school work. So, I could see that these people do not provide a required service because sometimes I would take her for treatment and they would simply turn us away without any treatment”.
Dineo also shared how a personal experience led her to becoming an HBCG: “I met the caregivers from this organisation when they visit us because my mother was sick. When they knock, I had to welcome them as I was excited for a change that would eventually leave my mother in a good health status. However, my mother was not willing to welcome them. She eventually opened up and allowed them to help her. That is when I taught myself about this illness until today”.
Like Dineo, Xhathula also shared how the experience of a having a family member living with HIV led her to her to involvement in care work: “The reason why I like to be a care worker is because we have HIV person and at home we didn’t know for about 10 years. She didn’t tell anyone. I was still at school, I think I was in Grade 11 or matric, we did find out when she gave birth as you know when you give birth babies are taken to the hospital. When we got there, she kept quiet. They were twins. I was holding one, she was holding another one and they said: ‘you know that positive children are not supposed to be given water’, and when the nurse comes to us I asked her if we lost or what, because we hearing her talking about positive people, what’s happening? The nurse asked if she didn’t tell us that she is positive and she said that one of the twins may be positive and when we ask our sister she asks “didn’t you know?” We were shocked because I had a little information and my mom didn’t know a thing, and then that’s when I joined; I learnt how we have to treat her”.
The role of the participants’ personal experiences prompting them to become involved in caregiving is documented in the literature on HIV and AIDS caregivers (Thabethe, 2011:790; Akintola, 2005:10; Claxton-Oldfield et al. 2004:79; Ramirez-Valles & Brown, 2003:7). Akintola (2005:10), in his South African study explored the role of volunteers in mitigating the burden of HIV and AIDS in households and communities as HBCGs in Durban, KZN, South Africa. Some of his participants’ involvement in caring for PLWHA were motivated by witnessing a family member dying an AIDS-related death and having a sick daughter. For Ramirez-Valles and Brown (2003:7), a research finding from their study focusing on the activities, motives, consequences and deterrents among Chicagoan Latino gay men in caring for PLWHA was the fact that they themselves had received assistance from community volunteers in the past and they therefore believed that it was their turn to pay back to the community.
In the case of Claxton-Oldfield et al.’s (2004:79) Canadian study focusing on the motives for joining a palliative care volunteer programme, personal experiences as cited by the participants who were palliative caregivers was the fact that they felt guilty that one of their loved ones had passed on when they were not present. Therefore they deemed it necessary to honour their deceased family member through caregiving. In the case of Thabethe’s (2011:790) South African research on the socio-economic context of care and women’s perspectives on caregiving conducted amongst HBCGs of PLWHA in KZN, it was found that they were involved in caregiving because they were infected with HIV and AIDS themselves.

TABLE OF CONTENTS
DECLARATION 
DEDICATIONS 
ACKNOWLEDGEMENTS 
ABSTRACT 
KEY TERMS 
TABLE OF CONTENTS 
LIST OF ACRONYMS 
CHAPTER ONE GENERAL INTRODUCTION AND ORIENTATION TO THE STUDY
1.1 INTRODUCTION, BACKGROUND, PROBLEM FORMULATION AND RATIONALE OF THE STUDY
1.2 THEORETICAL LANDSCAPE OF THE STUDY
1.3 THE QUESTIONS, GOAL AND OBJECTIVES OF THE STUDY
1.4 RESEARCH METHODOLOGY
1.5 RESEARCH DESIGN
1.6 RESEARCH METHODS
1.7 ETHICAL CONSIDERATIONS
1.8 CLARIFICATION OF CONCEPTS
1.9 FORMAT OF THE RESEARCH REPORT
1.10 CHAPTER SUMMARY
CHAPTER TWO AN APPLIED DESCRIPTION OF THE QUALITATIVE RESEARCH PROCESS
2.1 INTRODUCTION
2.2 A MOTIVATION FOR WHY AN APPLIED DESCRIPTION OF THE QUALITATIVE RESEARCH PROCESS IS REQUIRED
2.3 THE NATURE OF THE QUALITATIVE RESEARCH APPROACH
2.4 THE RESEARCH DESIGN APPLIED
2.5 THE RESEARCH METHODS AS APPLIED
2.6 PARTICIPANTS RECRUITMENT
2.7 COLLECTING THE DATA
2.8 ANALYSING THE DATA
2.9 VERIFYING THE DATA
2.10 APPLICATION OF THE ETHICAL ASPECTS CONSIDERED
2.11. CHAPTER SUMMARY
CHAPTER THREE RESEARCH FINDINGS (PART ONE): THE MOTIVATIONS AND CHALLENGES OF CAREGIVERS IN CARING FOR PEOPLE LIVING WITH HIV AND AIDS (PLWHA)
3.1 INTRODUCTION
3.2 THE DEMOGRAPHIC PARTICULARS OF THE PARTICIPANTS
3.3 THEMES, SUB-THEMES AND CATEGORIES THAT EMERGED FROM DATA ANALYSIS
3.4 CHAPTER SUMMARY
CHAPTER FOUR RESEARCH FINDINGS (PART TWO): THE EXPERIENCES, COPING STRATEGIES AND SUGGESTIONS FOR SOCIAL WORK SUPPORT
4.1 INTRODUCTION
4.2 A CONTINUATION OF THEMES, SUB-THEMES AND CATEGORIES THAT EMERGED FROM DATA ANALYSIS
4.10 CHAPTER SUMMARY
CHAPTER FIVE SUMMARIES, CONCLUSIONS, LIMITATIONS AND RECOMMENDATIONS
5.1 INTRODUCTION
5.2 SUMMARY AND CONCLUSIONS
5.3 LIMITATIONS INHERENT IN THIS STUDY
5.4 RECOMMENDATIONS
5.5 CHAPTER SUMMARY
BIBLIOGRAPHY
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