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research-article2014

QHRXXX10.1177/1049732314523682Qualitative Health ResearchStreid et al.

Article

Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa

Qualitative Health Research 2014, Vol. 24(3) 317­–328 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314523682 qhr.sagepub.com

Jocelyn Streid1, Richard Harding1, Godfrey Agupio2, Natalya Dinat3, Julia Downing4, Liz Gwyther5, Barbara Ikin6, Thandi Mashao7, Keletso Mmoledi3, Anthony P. Moll8, Lydia Mpanga Sebuyira2, Irene J. Higginson1, and Lucy Selman1

Abstract Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers’ primary stressors related to day-to-day patient care and emotional support; secondary stressors included financial hardship, family responsibilities, and social isolation. Caregivers’ social, relational, spiritual, and psychological resources mediated the effects of these stressors. Strengthening one resource strengthened others, but the failure of one resource hindered other resources, exacerbating burden. In providing caregiver support, policymakers and service providers should focus on enhancing caregivers’ resources as well as alleviating their stressors. Keywords Africa, sub-Saharan; Africa, South; caregivers / caregiving; coping and adaptation; end-of-life issues; families, caregiving; illness and disease, life-threatening / terminal; palliative care; psychosocial issues; quality of life; relationships; research, qualitative In 2010, sub-Saharan Africa was home to 12% of the global population, but 68% of all people living with HIV (World Health Organization [WHO], 2011). The rise of noncommunicable diseases has transformed cancer and cardiovascular disease into additional pressing public health issues. Noncommunicable diseases will account for an estimated 46% of all deaths in sub-Saharan Africa by 2030 (World Bank, 2011). Eighty percent of cancers in Africa reach an incurable state before diagnosis (Harding et al., 2013). The burden of disease, combined with patterns of late presentation and limited treatment options, makes palliative care a regional priority. The palliative care approach improves the quality of life of patients and families facing the problems associated with life-threatening illness. Palliative care prevents and relieves suffering through the early identification, assessment, and treatment of not only pain, but also other physical, psychosocial, and spiritual problems (WHO, 2006a). An estimated 10 million people need palliative care across Africa (WHO, 2005) and existing palliative care programs are under immense

pressure to meet the needs of growing populations (Joint United Nations Program on HIV/AIDS [UNAIDS], 2008). Despite the progress made in recent years, for the vast majority of Africans with progressive, life-limiting disease, access to palliative care is at best limited and at worst nonexistent (Grant, Downing, Namukwaya, Leng, 1

King’s College London, London, United Kingdom Hospice Africa Uganda, Kampala, Uganda 3 University of the Witwatersrand, Soweto, South Africa 4 African Palliative Care Association, Kampala, Uganda 5 Hospice Palliative Care Association of South Africa, Cape Town, Western Cape, South Africa 6 South Coast Hospice, KwaZulu Natal, South Africa 7 University of Cape Town, Cape Town, Western Cape, South Africa 8 Philanjalo Hospice, Tugela Ferry, South Africa 2

Corresponding Author: Lucy Selman, King’s College London, Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, Bessemer Road, London SE5 9PJ, United Kingdom. Email: [email protected]

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& Murray, 2011). Health system challenges, including inadequate health care expenditure and staff-to-patient ratios (WHO, 2006b), health worker migration (Powell, 2008), bed shortages, and erratic medicine supplies (Harding, Powell, Kiyange, Downing, & MwangiPowell, 2010), mean many are unable to access affordable, high-quality health care. Against this backdrop, and the tradition of returning to rural ancestral homes to die (Kikule, 2003), palliative care services in Africa have developed models of home-based care in which the provision of care by informal caregivers, most often patients’ family members and primarily older women and young people, is central (Powell & Hunt, 2012). Supporting caregivers in this role is essential, and such support requires a comprehensive understanding of the burden of palliative caregiving. In this article, we adopt Braithwaite’s (1992) definition of caregiving burden as the informal caregiver’s physical and emotional response to the stressors of caregiving, locating this burden within the theoretical framework of the Stress Process Model (Pearlin, Mullan, Semple, & Skaff, 1990). The Model presents caregiver stress as a process of multiple interrelated conditions, resting on the sociodemographic characteristics and resources of caregivers and the stressors present. Stressors are demands made by the internal or external environment that upset balance, thus affecting physical and psychological well-being and requiring action to restore balance (Lazarus & Cohen, 1977). Burden is a mediating variable between stressors and the stress reaction: psychological, relational, and social resources interact with caregiving stressors to buffer or exacerbate the burden experienced by the caregiver (Braithwaite). The Model respects the complexity of caregiving and the fact that stressors alone do not always predict the level of burden and the associated stress response of caregivers (Pearlin et al., 1990). The caregiver burden and its impact on well-being have been well described in resource-rich settings. Research from North America and Europe has shown that the caregivers of patients receiving palliative care experience high levels of anxiety and depression (Tsigaroppoulos et al., 2009), vulnerability (Proot et al., 2003), and unmet needs for information and financial and domestic support (Grbich, Maddocks, & Parker, 2000; Osse, VernooijDassen, Schade, & Grol, 2006). Studies in sub-Saharan Africa, although comparatively few, have highlighted such caregiving stressors as prevention from earning an income, premature marriage, dropping out of school, coming out of retirement, and assuming responsibility for patients’ children without the energy or resources to support them (Brouwer, Lok, Wolffers, & Sebagalls, 2000; Emanuel et al., 2008). Aspects of the wider sociocultural

context such as poverty, stigma, and discrimination against caregivers of HIV-positive patients (Hosegood, Preston-Whyte, Busza, Moitse, & Timaeus, 2007) can compound caregiver burden. Despite previous exploration of caregiver burden, there is only limited evidence regarding the resources drawn on by palliative caregivers in Africa that might act to mediate or buffer the impact of stressors, and existing studies on the caregiver experience have lacked a robust theoretical framework with which to focus research and interpret findings. Using the Stress Process Model, we aimed to investigate the burden experienced by caregivers of patients receiving palliative care in South Africa and Uganda to inform caregiver support services emerging in sub-Saharan Africa. Our research questions were as follows: What are the stressors experienced by caregivers of patients receiving palliative care in South Africa and Uganda. What kinds of resources do these caregivers draw on?

Methodology We conducted semistructured qualitative interviews with caregivers enrolled at five nonprofit palliative care facilities, one in Uganda and four in South Africa (see Table 1). Facilities were selected on the basis of their ability to support research and represent a wide range of palliative services, including home-based care and inpatient units.

Recruitment A researcher at each site approached eligible caregivers in the ward or during home visits; at Site A, the researcher also contacted existing caregivers by phone. Our target of 7 to 10 caregivers per site resulted in an overall target sample of 35 to 50 caregivers. Interviews were collected over 10 weeks. We included participants in the study if they were at least 18 years old, capable of giving informed consent, judged by clinical staff to be physically and mentally capable of being interviewed, and able to speak English or one of six local languages fluently (isiXhosa, isiZulu, SeSotho, SeTswana, Luganda, and Runyoro). To represent the diversity of caregiver experiences, the purposive sampling frame included age, gender, location, and place of care (community/inpatient/outpatient).

Data Collection Local researchers with backgrounds in nursing were recruited and trained on the study methodology by the principal investigators, who were multiprofessional palliative care researchers from the disciplines of medicine,

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Streid et al. Table 1.  Services and Number of Participants Recruited, by Site. Site

Area Served

Service Type

Source of Most Funding

A

Urban (Kampala, Uganda)

B

Urban township (Cape Town, South Africa)

C

Urban township (Johannesburg, South Africa)

Local, national, and Home care, day care, international donors outpatient clinic, hospital consultancy, and outreach to health care clinics through three branches Local, national, Four sister hospices, all international donors offering short-term (2- to 3-week) inpatient care; two also offer home care Government and Home care, outpatient international donors clinic, and inpatient unit attached to hospital

D

Rural (KwaZulu Natal, South Africa)

Home care and inpatient unit close to hospital

E

Rural, periurban, and urban township (KwaZulu Natal, South Africa)

Home care, day care, and inpatient unit

No. of Patients Cared For (2007–2008)

Type of Patients Cared For

Family Caregivers Recruited (n = 38)

2,396

Patients with advanced cancer or advanced HIV

10

1,607

Patients with HIV, cancer, or other progressive incurable condition

 3

1,818

Patients with cancer, HIV, or MND, from diagnosis until point of death Patients with HIV, from diagnosis until point of death Patients with cancer, HIV, or MND, from diagnosis until point of death

 3

Global Fund for AIDS, Tuberculosis and Malaria Local, national, and international donors, including Global Fund for AIDS, Tuberculosis and Malaria

847

1,290

12

10

Note. MND, motor neuron disease.

sociology, and philosophy. The researchers conducted interviews using a semistructured topic guide that covered the following areas: history of patient’s illness, caregiver problems due to illness (emotional, psychological, spiritual, economic, social, family-related), other people cared for, sources of support, family worries (if any), information received and needs for further information, and planning for the future. Participants gave written informed consent prior to the interview. All topic guides, information sheets, and consent forms were translated by the participating sites from English into local languages and then cross-checked by staff fluent in both English and the relevant local language. For isiZulu and isiXhosa forms, translations were performed by the University of KwaZulu Natal and the University of Cape Town, respectively. We also collected demographic and clinical data (see Table 2). An AIDS diagnosis was defined as the presence of a CD4 cell count below 200 cells/μL of blood or diagnosis of an AIDS-defining illness such as extrapulmonary tuberculosis. We conducted and recorded the interviews in the caregivers’ homes during routine visits or at the site during inpatient admissions. Each participant chose the language of the interview. Because of the distance between the clinic and participants’ homes, two trained local participants assisted the researcher at Site A. At Site E, a trained interviewer assisted because the researcher did not speak isiZulu. The study was reviewed and approved by the ethical review boards of the Universities of Cape Town, KwaZulu Natal, and Witwatersrand, the Ugandan

National Council for Science and Technology, Hospice Africa Uganda, and the Hospice Palliative Care Association of South Africa.

Analysis We transcribed the interviews and translated them into English. The principal investigators and staff members at each site provided assistance with translations of complex phrases, and principal investigators reviewed the transcripts to check translation accuracy. Transcripts were analyzed thematically in two phases. In the first phase, we focused on an inductive description of the data, identifying themes and subthemes arising in the transcripts, discussing preliminary findings with the research team, and validating the resulting coding frame. Selman coded transcripts line-by-line in NVivo, creating a coding frame of themes generated directly from the data and organized according to specific research questions (QSR International, 2010). Through a constant comparison approach, subthemes were generated and deviant cases highlighted within each theme to describe the breadth of the data. Regular project meetings (weekly for local teams, monthly by conference call for the entire team) were held to discuss data collection and analysis. The project team also met once face to face during the analysis process to discuss preliminary findings, with feedback later incorporated into the coding frame to improve its validity. Harding reviewed a random sample of five transcripts

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Table 2.  Characteristics of Sample by Site and Overall. Demographic Characteristic Mean (SD; range) age in years Female Responsible for children?  Yes   Mean (SD; range) no. of children   Mean (SD; range) household size Location of home  Urban  Periurban  Rural Primary diagnosis   Cancer only  HIV   Dual HIV–cancer diagnosis  Missing

Site A (n = 10)

Site B (n = 3)

Site C (n = 3)

41.8 45.3 40.3 (18.6; 19–77) (23.3; 29–72) (15.0; 26–56) 8 (80) 3 (100) 2 (67) 9 (90) 3 (100) 3.7 (2.2; 1–8) 1.3 (0.6; 1–2)

2 (67) 2 (0; 2)

Site D (n = 12)

Site E (n = 10)

Overall (N = 38)

33.6 59.2 44.8 (8.2; 25–46)a (14.5; 35–74) (17.5; 19–77)a 9 (75)a 10 (100) 32 (84)a   7 (70) 30 (79)a 9 (75.0)a 3.1 3.3 3.1 (0.8;2–4)a (1.6; 1–6) (1.6; 1–8) 5.3 7.1 7.9 (2.0; 2–9) (3.5; 2–20)a (7.0; 6–14)a

8.7 (5.3; 2–20)

6 (2.6; 4–9)

6 (2.0; 4–8)

0 7 (70) 3 (30)

0 2 (67) 1 (33)

3 (100) 0 0

0 0 12 (100)

1 (10) 1 (10) 8 (80)

6 3 0 1

0 1 2 0

0 2 0 1

0 12 0 0

2 7 1 0

4 (11) 10 (26) 24 (63)   8 25 3 2

Note. Values are numbers (percentages) unless stated otherwise. a Three missing.

from each service to ensure internal consistency and independence of themes and ascertain interrater coding reliability. Interrater coding reliability was good in that only minor, nonsubstantive discrepancies were identified and these were resolved through discussion. In the second phase, the inductively generated coding frame was appraised in light of Pearlin et al.’s (1990) Stress Process Model to ascertain whether the Model fit the data and would be useful in further analysis. Several of the initial, inductively generated themes (relating, e.g., to coping and the impact of illness on the family) fit the Model and supported its use as we moved into a more analytical exploration of the data. The Stress Process Model is widely used (e.g., Bainbridge, Krueger, Lohfeld, & Brazil 2009; Hauser & Kramer 2004) and comprehensive, containing five domains representing the proliferation of stress toward potential outcomes: (a) the background and context of stress, (b) primary stressors, (c) secondary stressors, (d) mediators of stress, and (e) outcomes or manifestations of stress. Primary stressors stem directly from the needs of the patient and the nature and magnitude of care demanded. Secondary stressors are other hardships to which primary stressors lead. Mediators include coping, social support, and personal resources that buffer the effects of stressors on caregiver outcomes. In applying the Stress Process Model, Streid performed additional in-depth, line-by-line coding, reviewed by Selman, which focused on caregiver stressors and

mediators. We focused on stressors and mediators in this study because our interest was primarily in caregiver burden. However, we were also sensitive to the ways in which background and context are threaded through the stress process and hence influence burden, and to how the burden resulting from the interaction of stressors and resources affects caregiver outcomes. We analyzed demographic data using frequencies in SPSS v15 and imported them into NVivo (QSR International, 2010) as attributes. In-depth analysis was conducted in NVivo using matrix searches to explore patterns in the data (e.g., examining associations of age, gender, and patient diagnosis with specific themes) and relationships between themes. Findings are reported with reference to the location of the interview, the age of the caregiver, and their relationship to the patient.

Results Sample Characteristics We conducted 37 interviews across the five sites. Interviews lasted 20 to 60 minutes. Of the caregivers approached to participate, 7 refused at Site D and 2 at Site E. Interviews were conducted in isiZulu (n = 23), English (n = 8), isiXhosa (n = 1), and Luganda (n = 5). Mean caregiver age was 45 years; most were women (32 women, 3 men; 2 genders missing), most were related to the patient (8 mothers, 7 wives, 3 daughters,

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Streid et al. 2 sisters, 1 daughter-in-law, 1 grandson, 1 cousin), and one was a paid caregiver.

Findings Findings are divided into two major themes: caregiver stressors (primary and secondary) and their impact, and mediators (internal and external resources). Caregivers described wide-ranging ways in which caring impacted on their lives. Primary stressors related to caregivers’ responsibilities to the patient (day-to-day care and emotional support), and secondary stressors related to financial hardship, family responsibilities, and social isolation.

Primary Stressors Day-to-day patient care. Responsible for bathing, dressing, and feeding patients, caregivers described day-today care as exhausting. They also served as liaisons between health workers and patients, and some expressed frustration over physicians’ perceived negligence or disrespect. Caregivers’ pent-up stress affected their relationships with others: “I do sometimes shout, even if there’s nothing wrong” (KwaZulu Natal, age 71, mother caring for son). Nearly every participant experienced fatigue, and many regularly lost sleep while tending to patients at night. Older caregivers were particularly prone to exhaustion: “These last two days of going backwards and forwards to the hospital [were] very stressful. I told Mom, ‘I can’t do it anymore.’ I mean I’m not young myself, I’m sixty-one and I’ve also been sick” (KwaZulu Natal, daughter caring for mother). Bearing witness to the suffering of loved ones was one of the greatest stressors. Caregivers empathized with their patients to the point of emotional distress: “I know what she is going through. I can feel the pain, too” (Cape Town, age 72, daughter-in-law caring for mother-in-law). Some participants wished they could be in pain instead: “I’d rather die just to save him” (KwaZulu Natal, age 71, mother caring for son). In the face of disease, caregivers also experienced helplessness and frustration: “I was very angry and felt pain in my heart because she was sick and I didn’t know what to do” (age 65, mother caring for daughter). Feelings of fear pervaded; some caregivers, for example, dreaded the manifestation of patient’s symptoms or the patient’s impending death. Emotional support of patient.  Caregivers had to cope with not only their own emotional distress but also that of the patient. Patients often confided in caregivers, expressing fears, depression, and hopelessness. Some caregivers helped their patients process the trauma of their diagnosis:

[Name] is sad sometimes. She likes to be alone or she gets angry and shouts at people. We now understand her, but her status worried her so much and she often asked if it’s the end of her life, being HIV positive. But we talk to each other and now she realizes that life must go on. (KwaZulu Natal, age 38, mother caring for daughter)

In response to the emotional distress of their loved ones, caregivers felt frightened and drained. Some caregivers had to counsel their patient through suicidal thoughts, as a daughter caring for her mother with metastatic breast cancer explained: The main thing is to get her out of her depression. I say to her, “Come on, Mom, you’re not sick now. Help me to do this.” . . . At one stage she was so down that she wanted to take her own life. (KwaZulu Natal, age 61)

Secondary Stressors Financial hardship. Caregivers usually adopted the patient’s financial responsibilities, particularly as patients had often been the breadwinners. Not all caregivers could generate enough income and so relied on governmental grants that failed to cover necessities. Two mothers reported they were unable to provide their family with enough food. Financial difficulties were especially common among those caregivers caring for a patient with HIV. The weight of financial responsibility, coupled with the caregiver’s frequent inability to fulfil that responsibility, caused anxiety. A mother caring for her son expressed concern over the effect her own death would have on her family’s well-being: We are all worried. Sometimes there is no food. That’s why I had to look for a job. I was working before but now I’m retired and I’m also sick. I’m a diabetic and have high blood pressure. . . . That’s my worry. What would happen to my family if I die? There is no one who could take my place. (KwaZulu Natal, age 67)

Responsibilities to the family.  Among caregivers’ responsibilities to patients’ families, child care proved particularly challenging. The caregiver effectively adopted the children of the patient or took on the role of a single parent. Often, they supported other children in the community as well, particularly where there were multiple cases of HIV infection in the same family. One 48-year-old woman in Uganda cared for 20 children; her brother-in-law had died and her HIV-infected sister was unable to work. She described significant economic challenges and worries, commenting, “Sometimes it brings the morale of the family down, especially with the children.” Incapacity to provide for children generated feelings of failure, hopelessness, and injustice:

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The patient has children. She is sick. I don’t have enough support or any other help. Do you see where the children sleep? [pause] There. Are these really beddings that should be on someone’s child? . . . I am worried because I don’t know how I will stay with the children. (age 48)

Already-strained caregivers absorbed new financial obligations they often struggled to meet, such as paying school fees: Since he fell down I can’t manage each and every thing alone. The two girls are in [Standard] two, so it becomes difficult for me. Even the school fees here . . . are difficult. So I couldn’t raise that fee myself since I am not working. They are now staying at home. (Uganda, age 41, wife caring for husband)

Caregiver duties to patients’ family members also included looking after their emotional well-being. Caregivers often served as confidants, offering the comfort of a listening ear to anxious family members. A woman caring for her husband said, “They are worried about things getting worse. . . . We talk about it and live each day as it comes and deal with things as they occur” (KwaZulu Natal, age 69). Although caregivers bolstered relatives’ ability to cope, their consoling role could be detrimental to their own emotional welfare. Some wanted to protect other family members from the difficulties of caring and adopted responsibilities without adequate support. One woman explained, “My sister-in-law’s coming to stay next week and she’s a nurse, so she said she’d help me with Mom. But they’re coming on holiday and I don’t want to burden her” (KwaZulu Natal, age 61). Shielding family members from stressors could isolate caregivers, forcing them to cope with their emotional suffering alone. Social isolation.  Caregivers reported feelings of isolation, because the need to be constantly available to their patients restricted their ability to leave home. For social interaction, caregivers often relied on visits, which could in themselves be stressful. One granddaughter explained that the odor of her grandmother’s fungating wound made receiving visitors difficult.

Mediators Caregivers drew on external and internal resources to cope with the stressors of caregiving. When caregivers drew on external resources, they relied on the support of others (family, community, and the patient–caregiver relationship). For internal resources, they drew strength from their own beliefs and outlook (spiritual resources and confidence). Resources were interconnected and sometimes fragile.

External resources Family.  For many caregivers, support from other family members proved crucial in coping with their own day-to-day burdens. Although some relatives provided material support—purchasing food, drugs, and other necessities and thus helping caregivers cope with the realities of poverty—such acts of generosity occurred in only a handful of cases, because relatives were often poor themselves. Family support took other forms. Relatives would serve as informants, synthesizing information about the illness from books, physicians, and the Internet for the caregiver, who often felt more at peace when well informed. Family also served as a crucial source of emotional support, as explained by a wife caring for her husband: [The other family members] are very supportive. They’ve also all got a terrific sense of humor, so there’s lots of jokes flowing around and what have you, so that also does make a difference to your outlook. Laughter helps. And the grandchildren, too—they’re always phoning us with stories about the grandchildren and what they’ve been doing. (KwaZulu Natal, age 69)

Not all caregivers could rely on family for support; families were a stressor rather than a resource for many. This was more common among families in which the patient was infected by HIV than in those with patients with cancer. Although 7 participants talked about family as a resource, 9 explicitly described negative experiences. Seven in the latter group cared for patients with HIV. Family members sometimes lived far away, leaving overwhelmed caregivers feeling isolated and bitter. Some participants, especially those whose patients were HIV-positive, faced apathetic or even antagonistic families. A teenage daughter reported that the family had effectively abandoned her and her mother: “Sometimes I call and they are not there, as they are trying to get rid of me because of the patient. . . . They have not been happy with this sick[ness] of the patient” (Uganda, age 19). Such neglect, arising from the stigma of HIV, exacerbated feelings of isolation and injustice. Some caregivers described the pressure of family expectations, believing that the family would blame them for the patient’s death: “If anything happens that she passes away, then I’m in trouble with the family” (KwaZulu Natal, age 44, mother caring for daughter). Patients’ families could lack confidence in or express hostility toward the caregiver; one reported that other family members had accused her of making a poor medical decision. A stepmother reported that because she was not the biological mother of the patient, family members doubted her ability to care for her stepdaughter. Negative experiences with family members had a double effect on caregivers: not only were caregivers deprived of a critical

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Streid et al. support system, but they were also confronted with stressful relationships and situations that added to the burden of care. Community. Neighbors were important points of contact for caregivers who were largely confined to the home by their responsibilities. Visitors encouraged caregivers and provided them with information on their patient’s illness and advice on treatment options. Faith communities also served as a supportive resource for many participants. Prayer enabled social connectivity; fellow churchgoers visited homes to offer prayers, and caregivers sometimes prayed with their patients. One participant regularly prayed with health care professionals at the clinic. Whereas some participants described negative interactions with clinicians, this caregiver enjoyed a trusting relationship built on mutual faith. However, many caregivers lacked social support and expressed feelings of frustration, isolation, and loneliness. Patient–caregiver relationship.  The relationship between the patient and the caregiver was a central resource, often making the difference between psychosocial well-being and emotional distress. Caregivers with healthy patient– caregiver relationships enjoyed rewarding interactions daily. One caregiver, for example, explained that the constant positive feedback given by her mother-in-law encouraged her. Cultivating a relationship of trust bred intimacy; one patient disclosed her HIV diagnosis only to her caregiver. Patients’ faith in their caregivers bolstered caregiver confidence, better enabling them to cope with their responsibilities. Some participants caring for HIV-positive patients were HIV positive themselves. Although their own condition added to the challenges of caregiving, the shared experience of illness brought the caregiver and patient together. As one mother explained, “We are looking after each other. I am her mother and I am also HIV positive, but we look after each other” (KwaZulu Natal, age 38). Caregiver–patient solidarity fostered the caregiver’s psychosocial well-being by providing her with a sense of mutual empathy and support. The patient–caregiver relationship also provided caregivers with a motivating rationale for their work: “I’m looking after him because the love for him, I’ve got it always. Even if I’m sick, even if I’m walking on my knees, I’ll always give him love” (KwaZulu Natal, age 71). However, not all caregiver– patient relationships were healthy. Some caregivers reported that the patient never expressed appreciation for their support, prompting frustration and self-doubt. One caregiver struggled with her grandmother, who refused food and medicine so adamantly that the caregiver blamed her behavior on demons. Similarly, hostile, distant, or depressed patients exacerbated the burden of care.

Internal resources Spiritual resources. Spiritual beliefs were a critical internal resource for caregivers, helping them to cope with the reality of a patient’s approaching death. When asked if she was prepared for her mother-in-law’s departure, one caregiver responded, I am prepared, though it is not easy to let go. . . . I know that one day she will leave us and hope that the Lord will give her rest where she goes. . . . At times I feel exhausted but in the midst of that it will seem as if something has happened and I suddenly have strength to carry on. (Cape Town, age 72, daughter-in-law)

Deep religious convictions drove her devotion to her mother-in-law, whom she called her “guardian angel.” Her commitment was expressed in the Christian language of self-sacrifice: “When [the patient] is in pain, I feel for her and want to take it to me so that she can rest.” Caregiver confidence. A caregiver’s self-confidence was also a powerful source of resilience and for many was dependent on information access: Interviewer: Well, how do you understand having confidence with [your son] when looking after him? Participant: If I understand what’s wrong and can try and make him better by knowing how to look after him. (KwaZulu Natal, age 71, mother)

Information came from spouses, neighbors, previous experiences with illness, and classes. Self-assuredness could develop over time, with hospice support: “I have learned to be strong and I have been told by the hospice nurses what to do” (Cape Town, age 72, daughter-in-law caring for mother-in-law). The nature of the patient–caregiver relationship could itself be a source of confidence. One caregiver explained, “I am confident in caring for him. He is my husband so I know everything about him” (Cape Town, age 35). The intimacy of their relationship lent her a sense of certainty and confidence in caring for her husband.

Interconnected Web of Resources Caregiver resources were not discrete, but interconnected in complex ways (see Figure 1). Within this web, spirituality and a caregiver’s relationship with the family emerged as primary, in that they had a broad range of influence over other resources but were not dependent on them. The relationship with the family sustained other resources. For example, a spouse who provided a caregiver with information about the illness boosted the caregiver’s confidence, and encouraging siblings gave caregivers the perseverance they needed to maintain

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Qualitative Health Research 24(3) Viewing others as blessing

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positive relationships with their patients. For caregivers with strong religious convictions, faith provided a framework of belief and meaning that facilitated coping. Communal prayer reinforced a sense of community belonging and support, whereas personal prayer countered feelings of helplessness, strengthened caregivers’ resolve, and bolstered self-confidence. Conceptions of a merciful God and a joyful afterlife eased one caregiver’s fears concerning her mother-in-law’s death and in turn enabled her to support other family members. Spirituality thus fed into all other resources. Secondary resources, influenced by several other resources and in turn contributing to them, included selfconfidence, which served as a critical link among several caregiver resources. A supportive family contributed to a caregiver’s confidence by providing information and showing trust. Confident caregivers, in turn, were better equipped to counsel families, strengthening their relationship to them. One caregiver, for example, described how her “strong heart” enabled her to ease family members’ concerns. However, just as strengthening one resource strengthened others, the failure of one resource had far-reaching consequences. For example, a lack of community support placed caregivers under strain, which sometimes caused them to lash out and jeopardize family

relationships. Similarly, negative patient–caregiver interactions could damage a caregiver’s self-confidence, reinforcing feelings of helplessness and isolation.

Discussion In this article, we throw light on the burden experienced by palliative caregivers in sub-Saharan Africa and the resources they drew on to cope with that burden. Our findings support the utility of Pearlin’s Stress Process Model (Pearlin et al., 1990) in understanding the multidimensional nature of caregiver burden. More specifically, as hypothesized by Pearlin and colleagues, the effects of primary and secondary stressors on caregiver burden and well-being appear to be mediated by caregiver resources; in this case, social, relational, spiritual, and psychological resources (Pearlin et al.). Our findings reveal how contextual factors such as poverty and stigma contribute to burden and the ways in which multiple stressors are detrimental to caregiver outcomes. The resources that can prevent caregiver burnout were found to be multiple and interrelated, but often fragile. These findings have direct relevance for palliative care services wishing to support caregivers. Overall, caregivers of patients with HIV appeared to be more negatively affected by caregiving than caregivers of

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Streid et al. patients with cancer. This appeared to be a result of a combination of factors, including the lower socioeconomic status of those infected and affected by HIV, the stigma associated with HIV and its consequent social and familial problems, and failures in the mediators of stress in this group. Caregivers in this study assumed responsibility not only for their patient but also for their patient’s family. Financial constraints caused great anxiety. The patient had often been the main breadwinner, and caregivers had trouble generating income because of factors such as old age, caregiving duties, and personal exhaustion or sickness. As well as the practical and economic burden of care, caregivers played a key role in providing emotional support to both patient and family, often without any support themselves. Although patients and family members viewed caregivers as a source of strength and authority, caregivers themselves often found their role exhausting and demanding, and felt they did not have the energy or the skills to help patients and families cope. To cope with multiple primary and secondary stressors, caregivers drew on both external and internal resources. The interplay of stressors and resources was complex: one set of stressors could lead to another, whereas resources could strengthen one another or themselves become stressors if they failed. Caregiver spirituality, for example, influenced every other resource and shaped the caregiver experience. In particular, our finding that the failure of one resource can have a detrimental impact on other resources, potentially causing them to become stressors, is novel and important. The community, for example, could either be a source of support, buffering the effects of stressors, or act as a secondary stressor, putting relationships with family members at risk and exacerbating caregiver burden. Caregivers of patients with HIV were especially vulnerable to the isolation and breakdown of family and community support caused by stigma. Our findings confirm and expand on previous studies of the burden of care in sub-Saharan Africa. The physical challenge of providing day-to-day care was also described in an article that found that more than half of caregivers studied in Kenya had chest pains and coughs and 8% were HIV positive (Onyango, 2009). Researchers in studies reported caregivers’ experiences with financial strain and difficulties finding food and water (Brouwer et al., 2000; Emanuel et al., 2008). Our findings demonstrate that economic difficulties have a multipronged effect on a caregiver’s psychological well-being. Caregivers must handle not only the stress of struggling to make ends meet but also the sense of failure that results from an inability to provide for one’s family, especially when children suffer the consequences. The caregiver’s responsibility for the emotional support of patient and family has been largely overlooked in

previous studies. In this sample, caregivers reported being confronted by the intense psychological suffering of their loved ones, some of whom experienced suicidal thoughts, and described the strain of serving as a source of strength to patients and family members when they themselves were suffering. Murray, Grant, Grant, and Kendall (2003) also found, in a study of rural caregivers in Kenya, that emotional support was usually left to the family and seldom explored in any depth by health workers. A loved one’s suffering has been reported as a primary stressor for family caregivers in other settings (Hebert, Arnold, & Schulz, 2007), and previous studies have found that caregivers who are frustrated by their inability to manage patient symptoms can feel inadequate and helpless (e.g., Moore & Henry, 2005). Our data suggest that these emotions might stem from the intimate relationship caregivers often have with their patients, the majority of whom are relatives. Findings from this study also demonstrate how contextual sociopolitical factors in sub-Saharan Africa are challenging the viability of the family unit as a resource for care of those with incurable, progressive disease. The discrimination and lack of familial support reported in this article have been reported in other articles. A recent systematic review of the qualitative literature on end-oflife care in Africa concluded that the assumption that the extended African family’s capacity to withstand crisis is inexhaustible is “baseless” (Gysels, Pell, Straus, & Pool, 2011). Stigma against people living with HIV and their family members is highly prevalent and contributes to fatigue and the breakdown of social support (Hosegood et al., 2007). The findings of this study suggest that caregivers in sub-Saharan Africa use similar resources to those in Europe and North America. A literature review by Hauser and Kramer (2004) also found caregiver resources could be either internal (prayer, ritual) or external (faith communities, social support). Funk et al. (2010) reported that positive aspects of caregiving, such as a sense of pride and a loving relationship with the patient, function as coping mechanisms. Similarly, in our study, caregiver confidence and healthy caregiver–patient relationships strengthened a caregiver’s ability to fulfil his or her role.

Implications for Service Provision This article has clear implications for service provision. Governmental agencies and nongovernmental organizations must offer comprehensive support, attending to the needs of the entire family unit, in line with the palliative care approach (WHO, 2006a). In providing support for caregivers, policymakers and service providers must recognize that the caregiver burden is multidimensional and is alleviated by strengthening caregiver resources as well

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as relieving primary and secondary stressors. Financial strain in particular denies entire families’ basic needs for food and education while also causing profound psychosocial distress. Coaching caregivers on how to cope with the emotional distress of patient and family members can better equip them for their counseling role, whereas thirdparty counseling services for families would relieve caregivers of that role when needed. Interventions can also address multiple needs. For example, community training and education can help to alleviate the social stigma that contributes to caregiver burden while improving caregiver confidence and skills. The role of faith and the church community in supporting caregivers should also be recognized and harnessed; for example, by adopting a collaborative approach to supporting caregivers (Selman et al., 2010).

Limitations At Sites B and C, only three interviews were collected, potentially biasing our findings. For this reason, in this article we do not seek to compare caregiver experiences at different sites, but rather to generate an overall picture of caregiver burden in sub-Saharan Africa. Overall, our sample was predominantly female (84%) and included a wide age range (i.e., 18 to 77), reflecting the characteristics of caregivers in Africa (Powell & Hunt, 2012). Although the use of a different interviewer at each site was necessary, this might have affected our findings. All interviewers received identical training but differed in skill sets and previous research experience; therefore, interviews differed in their length and depth. In particular, interviews at Sites B and C were less indepth than those conducted elsewhere. Nevertheless, the overall data set was sufficiently rich to reveal a comprehensive picture of caregivers’ psychosocial burdens and resources. Because of resource constraints, interviews were transcribed and translated only once, with no backtranslation; however, to minimize misinterpretations, complex phrases were discussed by service staff members and principal investigators to retain as much of the original meanings as possible, and principal investigators reviewed the translations for accuracy. Owing to the wider aims of the study, the interviews covered aspects of the caregiver experience other than solely stressors and resources. Hence, data on characteristics that might have proven relevant, such as socioeconomic status, education, and ethnicity, were not collected, and future research into these factors is needed. Finally, this study was conducted in South Africa and Uganda, beacon countries for the provision of palliative care in sub-Saharan Africa. Because the majority of caregivers in Africa do not have access to palliative care services, it is likely that the actual burden

of care for the majority of caregivers far exceeds that reported by this sample.

Future Research In this article, we present a preliminary examination of the caregiver burden in incurable, progressive disease in Africa. To expand on our findings and gain a more comprehensive understanding of caregiver experiences, further research is necessary to examine how burden relates to caregiver outcomes such as depression and anxiety, and to explore caregiver burden in other populations. We have not, for example, explored possible benefits of caregiving that have been reported in other populations (Funk et al., 2010), the experiences of child caregivers (Skovdal, Ogutu, Aoro, & Campbell, 2009) and caregivers of multiple children, or the burden of caring for patients of different disease groups and in diverse geographical locations and socioeconomic contexts. Further research could also explore and test the model of relationships among caregiver resources generated from our data. Subject to further investigation in different populations, this model might serve to guide the development and provision of supportive services for caregivers in Africa. Finally, our findings highlight the ways in which the caregiver’s spirituality and relationship with the family act as coping resources in this population. Future studies should examine in greater depth the ways in which faith communities, spiritual beliefs, and family/community relationships affect the caregiving experience.

Conclusion Home-based care is recognized to be the most appropriate model of palliative care in sub-Saharan Africa. To underpin this model and prevent caregiver burnout, it is essential that palliative care services and government policy provide adequate support to informal caregivers (Hauser & Kramer, 2004). To improve support for this neglected group, service providers need to recognize the multiple factors that contribute to caregiver burden, elicit and foster caregivers’ available resources, and offer interventions to reduce the effects of caregiving stressors. Acknowledgments We thank Claire Gillespie, Penny Gwacela, and Patricia Ndlovu for assistance with data collection, the clinical teams at each participating site who assisted in recruitment, and the caregivers who participated in the study.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Streid et al. Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The BIG Lottery Fund UK and Cicely Saunders International, which supported this study under grant number IG/I010141040.

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Godfrey Agupio, RN, is a researcher at Hospice Africa Uganda, Kampala, Uganda. Natalya Dinat, MPhil, is a physician and former director of Witwatersrand Palliative Care, University of the Witwatersrand, Soweto, South Africa. Julia Downing, PhD, is an international consultant on palliative care in Kampala, Uganda, and was previously employed by the African Palliative Care Association. Liz Gwyther, MBChB, FCFP, MSc Pall Med, is a palliative care physician, CEO and chairperson of the Hospice Palliative Care Association of South Africa, and head of the Department of Palliative Care at the University of Cape Town, Cape Town, Western Cape, South Africa. Barbara Ikin, RN, is patient care manager at the Hospice Palliative Care Association of South Africa and former CEO of South Coast Hospice, Port Shepstone, KwaZulu Natal, South Africa. Thandi Mashao, RN, is a researcher at the University of Cape Town, Cape Town, Western Cape, South Africa. Keletso Mmoledi, BTech, is service delivery manager at the Division of Palliative Care, University of the Witwatersrand, Johannesburg, South Africa. Anthony P. Moll, MBChB, is senior medical officer at Philanjalo Hospice and the Church of Scotland Hospital, Tugela Ferry, KwaZulu-Natal, South Africa.

Author Biographies

Lydia Mpanga Sebuyira, BM BCh, BA, MRCP, is a palliative care physician and former director of clinical services and education at Hospice Africa Uganda, Kampala, Uganda.

Jocelyn Streid, BA, is a Hart Research Fellow at Duke University, USA, and an elective student at King’s College London, Department of Palliative Care, Policy, and Rehabilitation, London, United Kingdom.

Irene J. Higginson, BMBS, FFPHM, PhD, is a professor of palliative care and head of the Department of Palliative Care, Policy and Rehabilitation at King’s College London, London, United Kingdom.

Richard Harding, MSc, DipSW, PhD, is a reader in palliative care at King’s College London, Department of Palliative Care, Policy, and Rehabilitation, London, United Kingdom.

Lucy Selman, BA, MPhil, PhD, is Cicely Saunders International Faculty Scholar at the Department of Palliative Care, Policy and Rehabilitation at King’s College London, London, United Kingdom.

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Stressors and resources of caregivers of patients with incurable progressive illness in sub-Saharan Africa.

Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of c...
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