AIDS field in South Africa.

African Journal of AIDS Research

ISSN: 1608-5906 (Print) 1727-9445 (Online) Journal homepage: http://www.tandfonline.com/loi/raar20

Occupational stress experienced by caregivers working in the HIV/AIDS field in South Africa Alta C van Dyk To cite this article: Alta C van Dyk (2007) Occupational stress experienced by caregivers working in the HIV/AIDS field in South Africa, African Journal of AIDS Research, 6:1, 49-66, DOI: 10.2989/16085900709490399 To link to this article: http://dx.doi.org/10.2989/16085900709490399

Published online: 11 Nov 2009.

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African Journal of AIDS Research 2007, 6(1): 49–66 Printed in South Africa — All rights reserved

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Occupational stress experienced by caregivers working in the HIV/AIDS field in South Africa Alta C van Dyk

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Department of Psychology, University of South Africa (UNISA), PO Box 392, Pretoria 0003, South Africa e-mail: [email protected]

The burden of HIV on caregivers is especially heavy in South Africa where an estimated 5.5 million people were living with HIV in 2006, and where an estimated one in every three to four patients admitted to some public hospitals is HIV-positive. Occupational stress and burnout merit concern in South Africa as the severity and intensity of the HIV epidemic is often perceived as overwhelming, leaving many caregivers with intense feelings of hopelessness and despair. This study explores and describes the experiences, feelings and perceptions of South African caregivers working in various capacities (healthcare, counselling and teaching) in the HIV/AIDS field. A questionnaire investigating stress factors involved in HIV/AIDS-related care, symptoms of occupational stress, and employer support was completed by 243 caregivers. The results specify in what sense these caregivers find their work extremely stressful. Commonly, they battle with bereavement overload, over-identify with their patients, fear occupational exposure to HIV, and find it difficult to cope with their own and patients’ stigmatisation and confidentiality issues. The caregivers generally believed that they had not been adequately trained to offer HIV-related counselling; they largely felt unsupported by their employers, family and friends; and they were frequently angry about slow government processes and misleading health messages. Caregivers working in different capacities found HIV-care-related factors equally stressful, while school teachers claimed significantly more symptoms of occupational stress than counsellors and healthcare workers. The results clearly indicate that these categories of caregivers work in extremely difficult circumstances and require support from their employers to prevent burnout. Suggestions on how to assist such caregivers in their work environment are made, and support strategies are discussed. Keywords: burnout, counsellors, employer support, nurses, stress factors, teachers, questionnaire

Background The burden of the HIV epidemic on caregivers is especially heavy in South Africa where in 2006 an estimated 5.5 million (4.9–6.1 million) people were living with HIV, prevalence was 29.5% among pregnant women, and about 22% of almost one million South Africans in need of antiretroviral therapy were receiving treatment (UNAIDS, 2006). Public hospitals across the country are overwhelmed with patients diagnosed with HIV-related illnesses (Ncayiyana, 2001). It is estimated that one in every three to four patients admitted to some public hospitals is HIVpositive (Smit, 2005), suggesting that caregivers are treating patients who are infected with HIV on a daily basis. The UNAIDS declaration states that “South-Africa’s AIDS epidemic — one of the worst in the world — shows no evidence of a decline” (UNAIDS, 2006, p. 17), and this sketches a bleak picture for the occupational future of caregivers in the country. However, this burden is not only restricted to caregivers in the healthcare professions, but spills over into communities, forcing professionals in various capacities to counsel, educate and care for people infected or affected by HIV. It therefore becomes crucial to examine the experiences of South African caregivers working in different capacities in the HIV/AIDS field — to

measure the extent of occupational stress they experience and to explore avenues of support. Occupational stress can be broadly defined as the perception of being unable to cope with an internal or external expectation or demand (Cox, 1981; Huxley Consulting, 2001). A stressful work situation, according to Cox, Kuk & Leiter (1993), is one in which coping resources are not well matched to the level of demand placed upon caregivers, when coping has constraints placed upon it (such as a lack of social and occupational support), and in which caregivers consequently experience negative emotions that diminish their well-being. If occupational stress is not addressed it can lead to burnout, described as “the end stage of a chronic process of deterioration and frustration in the individual worker, due to chronic emotional and interpersonal stressors in the work situation” (Miller, 2000, p. 28). Hence, burnout can be defined as a syndrome of physical and emotional exhaustion, involving the inability to offer psychological support to others, the development of a negative selfconcept, a reduced sense of personal accomplishment, negative job attitudes, and feelings of depersonalisation or a loss of concern and feelings for patients, clients and colleagues (Pines & Maslach, 1978; Maslach & Jackson, 1981; Maslach & Ozer, 1995; Miller, 2000).

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Although it is recognised that individual and personality factors such as anxiety, depression, ego weakness and negative attitudes can also contribute to the experience of work stress and burnout (Chamblers & Belcher, 1994; Bellani, Furlani, Gnecchi, Pezzotta, Trotti & Bellotti, 1996; Dorz, Novara, Sica & Sanavio, 2003), burnout in the context of HIV/AIDS care is more likely a function of the situation, social context and nature of the job, rather than the nature of the person doing the job (Ross & Seeger, 1988; Bennett, Michie & Kippax, 1991; Kleiber, Enzmann & Gusy, 1993; Bennett, Kelaher & Ross, 1994). The next section explores the stressful factors inherent in caring for people with HIV or AIDS in various contexts (such as the overwhelming nature of the condition, stigma, over-involvement with patients, bereavement overload, and role issues). Factors associated with occupational stress in the HIV/AIDS field Ungvarski & Flaskerud (1999, p. 282) believe that “caring for persons with HIV disease may put stresses on healthcare workers which go beyond caring for persons with other diseases.” Various researchers have indeed found that burnout does manifest itself more sharply and more strongly in the HIV/AIDS field than in other fields, such as oncology (Bennett, Ross & Kelaher, 1993; Bellani et al., 1996). Perreault & Demetrakopoulos (2004) conclude that it is the relentless complexity of working in the HIV/AIDS field that has led to caregivers facing impaired care and communication skills, fatigue, depression, unresolved grief, high staff turnover and burnout. And although the experience of HIVcare-related work stress and burnout has been reported from all parts of the world (Oktay, 1992; Visintini & Campanini, 1996; Dorz et al., 2003), such reports from Africa cause great concern for the psychological health of caregivers. The next sections consider the stressors and possible causes of occupational stress and burnout in caregivers working in various capacities in the HIV/AIDS field. The overwhelming nature of the disease The severity and intensity of the HIV epidemic and the fact that AIDS is not a disease of individuals but involves whole families and communities are a great source of stress, often leading to intense feelings of helplessness in caregivers (Cushman, Evans & Namerow, 1995; Smit, 2005). Zimbabwean counsellors, for example, expressed feeling extremely helpless and hopeless: “We know that our patients will die no matter what counselling we provide” (quoted in Mazodze, Richards & Pennymon, 2004, p. 1), while in a group of South African nurses one said they “chose the nursing profession to heal, whereas now we have to watch clients die without being able to help or at least to alleviate their suffering” (quoted in Lehmann & Zulu, 2005, p. 46). In another South African study, nurses working in hospitals in Gauteng Province expressed their feelings of depression and helplessness because “patients come to hospital sick, and they are discharged from the hospital, still sick…nurses are these days only nursing for the mortuary” (quoted in Smit, 2005, p. 25). AIDS caregiving is further intensified by the relatively young age of AIDS patients. The effect of continual exposure to the sickness and deaths of

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young people as a significant source of stress among AIDS caregivers has been described by various researchers (e.g. Masterson-Allen, Mor, Laliberte & Montiero, 1985; Bennett & Michie, 1991; Hayter, 2000). The difficulties of orphans and other children made vulnerable by the affects of the epidemic further exacerbate the risk of burnout for AIDS caregivers in developing countries (Defilippi, 2003). Teachers from KwaZulu-Natal, South Africa, thus described their personal despair in focus group discussions: ‘Parents are dying, leaving these bewildered orphans behind’; ‘we bury at least one parent per week’; ‘children are sick and hungry’; and, ‘young children with potential leave the school to find work or to beg in cities to look after siblings’ (UNISA Centre for Applied Psychology [UCAP], March 2006). Caregivers in various capacities find the overwhelming nature of AIDS extremely disempowering — putting them at a disadvantage even before they start their caregiving tasks. Financial hardship HIV/AIDS caregivers in sub-Saharan Africa are likely to feel disheartened by the disempowering effects of poverty. Various caregivers working in different capacities in the region have expressed feelings of helplessness when having to promote the importance of nutritional support in severely impoverished areas, where people scarcely have enough food for one meal a day (UNAIDS, 2000; Mazodze et al., 2004; Lehmann & Zulu, 2005). Teachers are often concerned about the effect of hunger and poverty on their pupils’ ability to concentrate and to stay in school (Focus group discussions, UCAP, March 2006). South African caregivers report many instances of giving up their own lunches or money to alleviate hunger among clients. Nurses working in a township in Cape Town commented that they “even bring clothes from home for the babies. We end up being social workers” (quoted in Lehmann & Zulu, 2005, p. 43). Stigma associated with HIV/AIDS care Caregivers working in the HIV/AIDS field often experience isolation, stigma and discrimination, and are often ostracised and avoided by community members, friends, family and other colleagues because they care for people with AIDS. South African nurses in one recent study expressed a sense of outrage against members of society that treated them, as nursing staff, with contempt: “I can’t dare to wear my nurse’s uniform when I go home. Before leaving the hospital, I remove my epaulettes, so that people can think I work for Pick ’n Pay [a food chain store] or something. It is risky these days to say that you are a nurse. People think because we work with HIV-positive people, that we are contaminated or something” (quoted in Smit, 2005, p. 26). Research has shown that this secondary stigma has serious impact on caregivers’ quality of caregiving and quality of life, as it deprives them of much-needed support; it also contributes to caregivers’ emotional exhaustion, occupational stress and burnout (Bennett & Michie, 1991; Bennett et al., 1994; Lego, 1994; Hayter, 1999; Armstrong, Babiyre, Finnegan, Nsubuga, Ottenweller, Sozi & Towell, 2000). In a review of research literature on the impact of the epidemic on healthcare workers, Horsman & Sheeran (1995) found that healthcare workers so feared

African Journal of AIDS Research 2007, 6(1): 49–66


stigmatisation arising from caring for people with AIDS that many of them felt they should be able to refuse to care for such patients. Over-involvement, over-identification and boundary problems Over-involvement, over-identification, and boundary problems between staff and patients are significant factors contributing to occupational stress and burnout in caregivers (Bennett, 1992; Bennett et al., 1994; Miller, 1995; Ross, Greenfield & Bennett, 1999; Hayter, 1999; Ungvarski & Flaskerud, 1999; Akribi & Msellati, 2000). Symptoms of stress and depression, and feelings of guilt, anxiety and sadness are often reported by caregivers who feel they are unable to remain close by at all times that their clients or patients need them. Over-involvement and intense relationships between caregivers and people living with HIV are now reported so often in the literature that some authors have concluded that caregivers are inclined to get emotionally involved with their patients to compensate for the caregiver’s therapeutic limits, or to compensate for the unfair treatment and stigma patients have to face (Bennett, Miller & Ross, 1995; Visintini & Campanini, 1996). The need of caregivers to overcompensate in the absence of a cure for the condition has also been found by Gerbert, Caspers, Moe, Clanon, Abercrombie & Herzig (2004) with regard to physicians who experienced it as a personal failure when their patients with AIDS illness ‘did not listen to them’ and so made their own decisions not to take their medication. The difficulty experienced by many healthcare workers in discerning the fine line between involvement and over-involvement with patients has often had serious consequences for their personal lives. Maj (cited in Bennett & Kelaher, 1993) found that for some healthcare professionals, over-identification occurred to a point where they believed themselves to be infected by HIV. And nurses who participated in the study by Lehmann & Zulu (2005) reported conflict at home because they no longer trusted their own teenage children owing to their experiences with teenagers at clinics. For many caregivers in Africa, personal identification with the suffering of their AIDS-sick patients is inevitable because they themselves or their loved ones may also be infected with HIV (Shisana, Hall, Maluleke, Chauveau & Schwabe, 2004). Various studies have shown how counsellors and nurses may find it impossible to distance themselves from their clients, because they see their own symptoms and problems reflected in their clients and essentially observe first-hand how they too may become sick and die (Mazodze et al., 2004; Nzama & Welz, 2004). Thus, self-identification with patients has been found to be a major factor contributing to occupational stress and burnout among AIDS caregivers (Miller, 1995 and 2000). Caregivers working in the HIV/AIDS field often find it difficult to set professional boundaries between themselves and their clients, especially in traditional communities, where the extended family system means that a caregiver is rarely a stranger in a village or community. Nurses have expressed feelings of severe stress and guilt due to the emphasis on confidentiality in a work context where they

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know almost everybody in a particular community (Lehmann & Zulu, 2005). It may be extremely difficult for them to bear the knowledge of patients’ HIV test results, while they have social contact with the patients’ partners, close family members and children, who are not necessarily similarly informed. Caregivers also find it difficult to maintain professional boundaries in traditional settings where people are exceptionally poor, do not have medical, financial or social support, and are often rejected by loved ones. In her study on the needs of HIV lay counsellors within economically disadvantaged communities in South Africa, Nefale (2004) found that counsellors often had to get involved with funeral arrangements for deceased clients, care for orphaned children and fulfil other unforeseen practical roles. Likewise, nurses increasingly found themselves engaged in extraordinary (non-clinical) activities, such as “looking for cheap undertaker services, because the families have no money for the funeral, and there is nothing we can do with the corpse on the trolley — sometimes the members of the family hide themselves because they do not want to take responsibility” (quoted in Lehmann & Zulu, 2005, p. 43). Getting involved in these activities (which can be seen as a ‘bending of the frame’) burdens the caregiver emotionally and often leads to emotional distancing, overidentification, stress and burnout. Grief and bereavement overload Martin (1990) found that the most frequently reported ethical dilemma in the HIV/AIDS field relates to death and dying. The constant exposure to death and not having the opportunity or time to grieve often results in bereavement overload, when caregivers feel they can no longer make a difference and when they see death as a personal failure (Clark, 1989; Piemme & Bolle, 1990; Bennett & Kelaher, 1993). Various researchers have found a strong correlation between the death of clients or patients (especially the number of individuals dying) and the experience of bereavement overload, grief, powerlessness, occupational stress and burnout in the caregivers (Riordan & Saltzer, 1992; Bennett et al., 1994; Strathdee, Flannery & Graydon, 1994; Hayter, 1999; Ferreira, Ferreira & Gjourup, 2000). Bennett & Kelaher (1993) found that it was especially overidentification with their patients that placed caregivers at emotional risk of bereavement overload. Professional and role discomfort Various researchers have found that occupational stress and burnout in the HIV/AIDS field are associated not only with the severity of AIDS illness but also with certain organisational factors (Constable & Russell, 1986; WalcottMcQuigg & Ervin, 1992; Cushman et al., 1995; Miller, 1995; Hayter, 1999; Niven & Knussen, 1999; Armstrong et al., 2000; Ferreira et al., 2000; Mazodze et al., 2004; Smitakestrin, 2004; Lehmann & Zulu, 2005). Caregivers often experience frustration, anger, inadequacy and helplessness due to numerous organisational factors, especially lack of emotional and practical support, lack of supervision and mentoring, role ambiguity due to role expansion, inadequate training, role discomfort, heavy patient/client load and workload, and isolation. Lifeskills


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teachers from 150 secondary schools across South Africa reported a lack of support in terms of materials and resources for HIV/AIDS education; they were also disheartened by a lack of support from religious groups and from students’ parents (Peltzer & Promtussananon, 2003). South African nurses participating in Smit’s study (2005) expressed concern about the deterioration of public hospital infrastructure, insufficient medical equipment, hospital understaffing, increasing numbers of patients in overcrowded wards, and the fact that they were expected to perform duties outside the scope of their job description, such as cleaning floors and collecting linen from the hospital laundry. Volunteer workers especially often feel unsupported by the health system, and many valuable workers eventually resign out of frustration (Ross et al., 1999; Nzama & Welz, 2004). Role expansion and lack of appropriate skills are often mentioned by caregivers as sources of occupational stress in HIV/AIDS care. According to Miller (2000, p. 89), “Counselling was almost unheard of as a cornerstone approach to public health management in any field prior to the emergence of HIV/AIDS.” Medical healthcare professionals in various studies have expressed their comfort with the traditional advice-giving, patient-provider role, and have found it very difficult to adhere to traditional counselling principles (Gerbert et al., 2004). In a study investigating doctors’ attitudes to the care of children with HIV in South Africa, Fransman, McCulloch, Lavies & Hussey (2000) found that more than half the participants lacked confidence with regard to their counselling competence; their pre- and post-test counselling skills were also inadequate. Professional counsellors and psychologists who participated in the study by Mazodze et al. (2004) felt inadequately trained because they viewed HIV counselling as complex and different from other types of counselling; they also felt inadequately equipped to deal with basic medical aspects of HIV infection and AIDS. Nurses in the study of Lehmann & Zulu (2005) expressed strong feelings of insecurity and frustration because they often had to render counselling services that they felt unable to perform since they had not received appropriate training. Fears of occupational exposure to HIV A review of the literature on the impact of HIV on caregivers indicates that they are generally highly fearful of occupationally acquired HIV infection, and this fear is often linked with high levels of occupational stress and burnout (Van Servellen & Leake, 1994; Horsman & Sheeran, 1995; Miller, 1995; Bellani et al., 1996). In the 1980s fear of contagion mainly related to lack of knowledge; now, the fear mainly has to do with healthcare authorities downplaying the real risk, prescribed precautions that do not guarantee protection, a lack of communication between authorities and caregivers, and a lack of resources to observe universal precautions (Gerbert, Maguire, Badner, Altman & Stone, 1988). Nurses working in Gauteng hospitals (South Africa) expressed concern about the low quality and regular unavailability of gloves, aprons, masks and incontinence aids, which they felt increased the risk of accidental exposure to HIV (Smit, 2005). The fear of occupational

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exposure to HIV has serious professional consequences, such as avoidance or refusal to care for patients, as well as personal consequences, such as partners urging caregivers to quit their jobs to avoid infection of themselves or their children (Wallack, 1989; Bellani et al., 1996; Ungvarski & Flaskerud, 1999; Smit, 2005). In the study by Lehmann & Zulu (2005), nurses spoke extensively about their fears of occupational exposure and the impact of this stress on their family lives and sexual relationships. Fuelled by stigma and fear, they were often not even allowed to touch food at home while they were waiting for test results after occupational exposure to HIV. Uncertainty and rapid change in the HIV/AIDS field Buhrich (1989) pointed out that caring for AIDS patients is loaded with ‘inevitable disappointments.’ The traditional goals of medicine and nursing care, namely to cure and to improve people’s lives, are no longer as obtainable in the context of the HIV epidemic. The professional identity of caregivers can thus be called into question, resulting in feelings of professional impotence (Bennett & Michie, 1991; Van Servellen & Leake, 1994). HIV specialists who participated in the study of Gerbert et al. (2004) expressed how uncertainty and rapid change in the HIV/AIDS field has left them with feelings of occupational stress and burnout. While antiretroviral therapy has brought relief to many people, it also causes another dimension of occupational stress: decision-making about drugs, managing drug adherence in the face of resistance, witnessing and negotiating side effects, and coping with treatment failure have been described as extremely stressful by many healthcare professionals in developed countries (Ungvarski & Flaskerud, 1999; Gerbert et al., 2004). But, in sub-Saharan Africa, caregivers may be mostly distressed because they do not have a drug option to offer their patients, since antiretroviral therapy is not widely available and often not sustainable. It is clear from the literature that the HIV epidemic has brought major challenges to caregivers in various professions, but especially to those in Africa. This study aims to explore and describe the experiences, feelings and perceptions of South African caregivers working in various capacities in the HIV/AIDS field (e.g. healthcare, counselling and teaching). Responses from three groups of occupational caregivers to a questionnaire were examined for differences in their experiences of stressors inherent in HIV/AIDS care and symptoms of occupational stress. The results have led to suggestions for support programmes to assist caregivers in this field and to prevent burnout and job resignations. Methods Participants and procedures Caregivers working in various capacities with patients or clients with HIV infection or AIDS, who were also enrolled in 2004 in a course on HIV/AIDS care and counselling at the University of South Africa (UNISA), were approached to answer a questionnaire. To exclude the course work as a confounding variable, the participants were asked to fill in the questionnaire before the course commenced. Their participation in the research was voluntary, and as students



they did not gain academic credit for submitting a questionnaire. However, the sample should be seen as a convenience sample that is not representative of all caregivers working in the HIV/AIDS field in South Africa. A questionnaire was distributed to 250 caregivers enrolled in the course and 243 completed the questionnaire (seven had indicated that as caregivers they were not directly involved with individuals infected or affected by HIV or AIDS). The study was approved by a departmental ethics committee and the participants were assured anonymity. The questionnaire was in English, was selfadministered by the participants, and took approximately one hour to complete. Measuring instrument A semi-structured questionnaire was used to obtain the following information from caregivers working in various capacities in the HIV/AIDS field: • Biographical information: Age, sex, occupation, workplace area, ethnic group, marital status and academic qualifications; participants were also asked to indicate how often they had contact with clients or patients with HIV infection or AIDS. • Stress factors associated with working in the HIV/AIDS field: Specific areas of stress associated with HIVrelated care (such as over-identification, stigma and discrimination, bereavement overload, fear of occupational exposure, lack of social support, and professional and role issues) were measured with a 27-item Likert scale. Participants indicated their response to the statements on a 6-point scale ranging from ‘strongly agree’ to ‘strongly disagree.’ (After a factor analysis and removal of 2 items, the range of the stress factor scale was 25–150.) The Chronbach alpha reliability of the final 25-item stress factor scale was 0.875. The content of the statements was based on the review by Miller (2000) concerning work, stress and burnout in HIV/AIDS caregiving. • Symptoms of occupational stress: Participants were asked to indicate to what extent they had experienced physical, behavioural, emotional or relational symptoms associated with occupational stress in the past three months. Symptoms of stress were measured with a 35item Likert scale, and participants indicated their responses on a 4-point scale ranging from ‘never’ to ‘very often’ (range 35–140). The Chronbach alpha reliability of the symptoms-of-stress scale was 0.947. The content of the statements was again based on the work of Miller (2000). • Organisational or employer support: In a ‘Yes/No/Not applicable’ question, caregivers were asked if their employers supported them sufficiently in their roles as HIV/AIDS caregivers or counsellors. They were also asked what specific forms of support their employers offered (if any): for example, supervision, mentoring, support groups, counselling, time-out, or in-house training. • Personal coping mechanisms: In an open question, participants were asked what they did to alleviate or cope with stress in their work context as well as in their personal lives.

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•

Participants were invited to share their personal experiences, feelings, hopes and despair, as well as their thoughts about the rewards or positive aspects of HIV/AIDS-related caregiving in short essay form.

Statistical analysis Closed questions were coded and analysed; thematic analysis was conducted on the answers to open questions and the short essays, in order to discover themes and patterns of similarities and differences among participants. Descriptive, inferential and correlational statistical techniques were applied using the Statistical Package for the Social Sciences (SPSS). Tests were two-tailed and level of significance was set at 5%. Because the Likert scales measuring the stress factors and symptoms of occupational stress are not standardised tests, the data of both tests were subjected to normality checks, and non-parametric tests were conducted where necessary (in the case of the symptoms-of-stress scale). Results Characteristics of the research participants The mean age of the participants was 37.5 years (SD = 10.68 years; range 19–75 years) and the majority were female (87.7%), married (46.1%), and had a post-school diploma or degree (74.1%). Almost half the 243 participants (48.1%) were healthcare workers (professional nurses, volunteer caregivers or doctors), while 31.7% were counsellors (professional, lay and religious counsellors, or social workers), 10.7% were educators (teachers and HIV/AIDS educators), and 9.9% were working in an associated medical profession. Of the participants, 30.9% worked in a city, 35.4% in a small town, and 32.1% in a rural area. The majority were black (78.6%), and 14% were white, 2.9% Asian, and 4.1% coloured. Most participants (60.1%) worked with clients infected with HIV or AIDS patients on a daily basis, while 11.5% had contact with clients once a week, 11.5% had contact once or twice a month, and 16.5% only occasionally. As expected, significantly more healthcare workers (nurses, doctors and volunteer care workers) worked with HIV-positive patients on a regular basis than did counsellors (z = 2.491; p = 0.013), and significantly more counsellors worked with HIV-positive clients than teachers or educators (z = 2.543; p = 0.011); 73.5% of healthcare workers, 55.3% of counsellors, and 26.9% of educators were working with HIV-infected clients or patients on a daily basis. Stress factors associated with working in the HIV/AIDS field Factor analysis was done on the 27-item stress-factor scale to identify specific dimensions of stress associated with HIVrelated caregiving. The following seven factors or dimensions of stress, explaining 58% of the total variance, were identified: 1) Over-identification with patients (including grief and bereavement issues as well as fear of HIV contagion); 2) frustration due to the overwhelming nature of the disease; 3) lack of organisational support; 4) lack of social support; 5) depersonalisation; 6) heavy workload;


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and 7) stigmatisation and secrecy surrounding HIV. Two items indicating depersonalisation (the fifth factor) were removed from the final scale and treated separately, since depersonalisation is not a stress factor but a symptom or result of occupational stress or burnout. The factor loadings on the stress factors (or sources of stress) are given in Table 1. The mean score on the stress-factor scale was 86.6 (SD = 20.47; minimum score 25, maximum score 137). The percentages of participants agreeing with the statements comprising the stress-factor scale are given in Table 2. No significant relationship was found between any of the socio-demographic variables (sex, age, marital status, ethnic group, academic qualifications, occupation, workplace, or frequency of contact with HIV/AIDS patients/clients) and the stress-factor scale, indicating that the experience of stressors in the HIV/AIDS field was inherent in the working context and not a function of the socio-demographic characteristics of the caregiver. Perhaps contrary to expectations, no significant difference was found between the three main occupational groups in terms of the extent to which they experienced stressors in the HIV/AIDS field. One-way unrelated analysis of variance (ANOVA) showed that the mean scores (and standard deviations) of healthcare workers, counsellors and educators on the stress-factor scale were, respectively, 94.89 (SD = 21.76), 98.26 (SD = 23.26) and 88.23 (SD = 28.37). These means did not significantly differ, F(2,213) = 1.858, p = 0.159, indicating that healthcare workers (involved in direct, physical care of patients), counsellors (involved in counselling and often in relating a HIV-positive diagnosis), and teachers and educators (involved in teaching HIV-infected/affected children at school) experienced the various stressors to more or less the same degree. Since there were no significant differences between the occupational groups in terms of the stress factors associated with working in the HIV/AIDS field, the occupational roles are not separately discussed, but the differences are highlighted where relevant. The overwhelming nature of the disease The huge number of people becoming infected was perceived as overwhelming by 51.2% of the participants, who felt that there were too many people affected by HIV to ever be able to help. Feelings of hopelessness because there is no cure for AIDS were expressed by 42.4%. Furthermore, 53.5% felt there is relatively little they can do as caregivers for their clients or patients, while 48.1% saw the needs of their patients/clients as never-ending. Feelings of disappointment and being disheartened because they could no longer ‘see a light at the end of the AIDS tunnel’ were expressed by 23.2% of the caregivers. Feelings of hopelessness about the overwhelming nature of the disease were often expressed in the essays: ‘I sometimes wonder why I am going on. They are all going to die anyway’ (Nurse), and ‘It is just too big and out of control. There is nothing as frustrating as seeing this very sick mother wearing mourning attire [sign of being recently widowed] carrying a sickly baby with two primary school kids following her. It becomes clear that these kids will grow up without parents’ (Primary school teacher).

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Over-involvement, over-identification, and boundary problems Over-involvement, over-identification and boundary problems between themselves and their clients/patients were serious problems for the caregivers. Content analysis of the short essays similarly revealed this as a major theme. Almost half the participants (48.8%) found it difficult to keep a professional distance from their clients/patients, and a similar proportion (48.3%) said that they became emotionally very involved with them. The majority of the caregivers (61.4%) found witnessing the pain and suffering of their clients/patients very stressful, and 79.3% (especially nurses) confessed that they felt the need to ‘rescue’ or save their clients/patients, often expressing their frustration in essay form at not being able to do so. Their work with individuals with AIDS depressed 50.2% of the caregivers, because it made them think of what would happen to their own loved ones should they become sick. Some caregivers (from all three main occupational groups) disclosed their own HIV-positive status in their essays, while many others indicated that they had family members and friends who were infected. Over-identification and seeing themselves or their loved ones reflected in every patient they treated or client they counselled was thus inevitable. But there seemed a price to pay in their personal lives for such overidentification, as is clear in the following quotes: ‘I think I have become obsessed. I don’t trust my husband in sexual relationships, and I don’t trust my teenage children. I always want to know where they are. It causes a lot of stress and problems in my home’ (Youth counsellor), and ‘It [AIDS] made me loose my sexual interest and it leads to marriage problems most of the time, because whenever I am in a situation where I am about to have sex I think of my HIVpositive patients and their terrible problems’ (Nurse). Over-identification with their patients may be one reason why so many caregivers (43.2%) claimed they battled with bereavement, death and dying issues, often felt overwhelmed by grief (37.9%), and found it difficult to deal with their patients’ distressed family members and loved ones (43.2%). Nurses commented that they were accustomed to death but definitely not on this large a scale, and which commonly involves whole families and communities. Counsellors, social workers and educators, on the other hand, commented that they were not used to their clients, schoolchildren or students’ parents dying at all. A teacher voiced her difficulty with the death of pupils’ parents as follows: ‘Every week one or other learner in the school buries a parent. These orphaned children disappear before our eyes! They are hungry, they mourn for their mothers, they don’t have money for books and school clothes and then they don’t come to school anymore. In a sense they too die.’ A nurse said, ‘Every death is a personal blow. I think it is because the patient shares so much personal things with you — secrets, fears, successes.’ Some caregivers ascribed their grief to the fact that they got to know their patients well, either because they belonged to the same communities or because of the nature of the condition, which continually brought patients back to the clinics until they died. Many caregivers expressed their personal fear of AIDS and death because they were about the same age as their patients.

Total explained variance: 58.007%

Eigen values Percent variance

Uncomfortable to talk about sex and sexuality Fear stigmatisation from community due to HIV/AIDS work Stressful not to be able to talk about patients/clients

Role expansion: HIV/AIDS-related care was added to other duties Heavy workload: difficult to cope

Feelings of apathy: don’t care about clients/patients any longer Feeling overwhelmed and overworked: just another job

Not enough support from family and friends Family and friends have no understanding of work

Insufficient support systems in workplace No supervision to guide caregivers and counsellors Inadequate training for role as HIV/AIDS caregiver/counsellor

Helpless: feeling not much one can do to help Impossible to satisfy never-ending needs of clients/patients ‘No light at the end of the AIDS tunnel’ Absence of cure for AIDS makes situation hopeless Overwhelming: too many people with HIV or AIDS to help

Emotional involvement with patients Self-identification with HIV disease Overwhelmed by grief Professional distance from patients is difficult Feel need to ‘rescue’ or save patients Bereavement and death issues are overwhelming Pain and suffering of clients/patients is overwhelming Imagined to have symptoms of HIV Fear of HIV contagion Difficulty in dealing with distressed family members

Items

7.014 25.976

665 653 650 641 574 548 546 521 509 457

Overidentification

Table 1: Factor loadings on stress factors associated with HIV/AIDS caregiving

2.243 8.308

724 719 692 657 556

Nature of disease

1.687 6.247

824 737 385

Organisational support

1.398 5.177

724 648

Social support


1.210 4.482

733 657

Depersonalisation

1.084 4.014

720 511

Workload

1.026 3.802

663 525 438

Stigma

African Journal of AIDS Research 2007, 6(1): 49–66 55

56

Van Dyk

Table 2: Stress factors associated with care work in the HIV/AIDS field, and number and percentage of caregivers who agreed or strongly agreed with the statements (n = 243 participants)


Stress factor and statements to which participants agreed/strongly agreed: Over-identification with patients or clients • I feel the need to ‘rescue’ or save my patients/clients. • The pain and suffering of my patients/clients causes me a lot of stress. • I feel depressed when I work with patients/clients with HIV because it reminds me of what might happen to my loved ones should they become infected or sick with AIDS. • I find it difficult to keep a professional distance from my patients/clients. • I become emotionally involved with my patients/clients. • I fear HIV contagion. • Bereavement, death and dying issues sometimes become too much for me. • It is very stressful for me to deal with distressed relatives/loved ones of patients/clients. • I am overwhelmed by grief when I work with patients/clients with HIV or AIDS. • I sometimes imagine that I have symptoms of HIV infection. Overwhelming nature of the disease • I feel frustrated because there is so little that I can do to help my patients/clients. • I feel that there are just too many people with HIV or AIDS whom I am never going to be able to help. • I feel frustrated because I cannot satisfy the never-ending needs of my patients/clients. • The absence of a cure for AIDS makes me feel that the situation is hopeless. • I feel disappointed and disheartened — as if I can no longer see ‘a light at the end of the AIDS tunnel.’ Lack of organisational support • There are insufficient support systems for caregivers or counsellors at my workplace. • It feels as if I work ‘in the dark’ because there is no supervision at my workplace to guide counsellors and caregivers. • I feel that I am not adequately trained for my role as an HIV/AIDS counsellor or caregiver. Lack of social support • My family or friends don’t really understand what I am going through at work with my clients/patients with HIV or AIDS. • I don’t get enough support from my family or friends. Heavy workload • My workload often makes it difficult for me to cope. • The fact that HIV/AIDS counselling and/or care were added to my other duties causes me a lot of stress. Stigmatisation and secrecy issues • Although confidentiality is necessary, I find it very stressful not to be able to talk to anybody about my patients/clients. • I fear that people in my community will stigmatise me because I work with people with HIV or AIDS. • I feel uncomfortable talking to people about sex and sexuality.

The needs of their clients/patients often made it difficult for caregivers to set professional boundaries, and they often had to fulfil tasks for clients beyond their occupational responsibilities. There were many reports of caregivers organising funerals, taking care of orphaned children, going to the homes of patients after-hours to help out, and giving away their own food, money or clothes to needy patients. Some nurses commented that they felt like social workers. A teacher commented that she ‘spends more time and money on her soup kitchen for orphans and other children affected by AIDS in the school than in my classroom or in preparing my classes.’ Over-involvement with patients and boundary problems led to many personal problems for caregivers, for example: ‘My husband gets very cross with me for giving my hard-earned money away. Most of our fights are about that’, and ‘I know I neglect my own children, but they [AIDS patients] have nobody.’ Almost a third of the participants (30.5%) said they often imagined themselves having symptoms of HIV infection, and over-identification with their patients clearly played a role. A 39-year-old nurse expressed her fear as follows: ‘It [AIDS] traumatises me. Every time I get sick, I suspect I have the virus. I am worried the whole entire period of the illness, but I do not have the courage to visit the health

n

%

192 148 122

79.3 61.4 50.2

117 117 113 102 105 89 74

48.8 48.3 47.9 43.2 43.2 37.9 30.5

130 124 117 103 56

53.3 51.2 48.1 42.4 23.2

143 72 59

58.8 29.9 24.5

108

44.4

52

21.7

79 35

32.5 14.5

84 32 17

34.6 13.2 7

centre for a test.’ Fear of HIV contagion also caused problems at home; some nurses confessed that they did not tell their husbands when they had sustained needlestick injuries because the husbands then refused to have sex with them (and in one case, he would ‘visit girlfriends’). They could also not share their (often irrational) fears with their partners, ‘because they freak out completely.’ Stigmatisation and secrecy surrounding HIV/AIDS Although they appreciated the need for confidentiality, 34.6% of the caregivers found it stressful not to be able to talk to someone about their clients. Nurses especially found their caregiving hindered by stigma and confidentiality issues: ‘How are we supposed to teach the family to care for their sick loved ones if we cannot tell them that this person has AIDS? How must they protect themselves?’ Many participants told stories about the discrimination and rejection their clients/patients suffered: ‘They [pregnant women] don’t take their Nevirapine tablets because they are afraid that the husband will ask them what they are taking’; ‘They still breastfeed their babies because they are scared of the stigma from the community since it is well known that most HIV-positive mothers are getting formula feeding from the hospital — so, if you don’t breastfeed, the



community immediately assumes that you have AIDS’; ‘Most of my clients are being rejected by their loved ones. Some are being isolated — they are given their own eating utensils and may not watch TV with others, especially when they are coughing’; ‘They are so lonely. Some never get visitors from significant others, except their mothers’; ‘How can we teach them to disclose if this is the life that awaits them after disclosure?’; and, ‘If I look at what is happening to my poor patients who disclose their status, I will never ever tell anybody if I am infected — not even my colleagues at the hospital.’ Some teachers related stories about how ‘colleagues refuse to teach sick learners, and if they are forced to do so, they put the kids at the back of the classroom and ignore them completely. The classmates catch on very quickly and they then do the same.’ Secondary stigmatisation was also an issue for caregivers, with 32% fearing that people in their communities would stigmatise them because they worked with AIDS patients. A community home-based nurse related how she was known in the community where she worked as ‘the AIDS sister who should be avoided.’ The teacher with the soup kitchen for orphans and other children made vulnerable by HIV complained that ‘some of my best friends refuse to come for tea at my place.’ Professional discomfort A heavy workload, role expansion and a lack of organisational support contributed to feelings of stress among caregivers in the study, with 32.5% responding that their workload often made it difficult for them to cope. Their essays revealed an almost inhumane workload placed on some caregivers: ‘On a normal day I see more than 50 patients to give them HIV education, pre-test counselling, or their results — most often positive. We are three counsellors and the suffering is more than we can cope with. To give good and accurate service is not easy.’ For many caregivers HIV/AIDS counselling or care had been added to other duties, causing considerable stress in 14.5% of the participants. A further 24.5% felt inadequately trained for their role as an HIV/AIDS counsellor or caregiver. Role expansion and lack of appropriate skills and training were popular themes in the short essays: ‘I have to counsel clients, and I have no idea how to do it properly’; ‘I have sleepless nights, because what if I said something that will hurt the patient?’; ‘The lifeskills and AIDS education was added on to my other duties as educator and I have no previous training to do it properly.’ The majority of participants (58.8%) said there was insufficient support for caregivers or counsellors in their workplace, and 29.9% felt that they worked ‘in the dark,’ because there was no supervision in their workplaces to guide counsellors and caregivers. Although not directly asked, many caregivers voiced their wish to leave their helping profession because they were finding it hard to cope. Almost half the participating caregivers (47.9%) feared occupational exposure and infection with HIV, and some blamed their employers for this: ‘Protective clothing is not available in the labour ward where I work. Every night when I go to bed I think: Maybe tomorrow I will become infected by mistake’; and, ‘They are only money-grabbers without

57

any concern for their employees.’ Some healthcare workers also complained that their workplaces did not inform employees about proper universal precautions, and that some did not have procedures in place to cope with needlestick injuries. Lack of social support Many HIV/AIDS healthcare workers, counsellors and educators experienced a lack of social support concerning their chosen work, with 44.4% indicating that their family and friends did not really understand what they went through at work, and 21.7% saying that they did not get enough support from family and friends. Three female nurses reported that their husbands had harassed and pressured them to resign from their jobs, or refused sexual relations with them for fear of HIV infection. One nurse wrote, ‘Even my teenage daughter begs me to stop working with AIDS patients — I don’t even tell them any more when I take medications for needlestick injuries. I bear the stress alone.’ Conditions of extreme poverty Content analysis of the short essays revealed that the extreme poverty of some patients or clients contributed to the experience of occupational stress for many caregivers. They felt disempowered and impotent to give health messages about the importance of nutrition, proper hygiene, healthy living, and adherence to medication to people ‘who are dirt-poor and do not have any food on the table’ or who ‘don’t have running water and have to walk miles to the nearest stream — where they also wash their clothes and their babies’ nappies’ and ‘who cannot afford bus fares to the clinics and are so sick that they cannot walk to the clinic to get their treatments.’ Poor hygiene (‘some cannot even afford soap’) and unhealthy living conditions (‘they live in mud houses with poor aeration which causes chest infections’) were reported by caregivers. Conditions that endanger public health were also reported: ‘There is no provision for paupers’ funerals [in a region of KwaZuluNatal]. This is proving to be disastrous. In some villages care workers are reporting the burials are taking place in the back yards.’ Many teachers reported on hunger in schools: ‘At first we thought that they had learning disabilities, now we realise that they are so hungry they cannot concentrate on anything’; ‘The small bowl of soup and one slice of bread we give them three times a week is often all they get to eat.’ Many caregivers felt so sorry for their patients or clients that they gave them small amounts of money, food and clothes: ‘I end up not eating myself. I always give my lunch or my lunch money away.’ The plight of children and young people The majority of the research participants commented in their short essays on the psychological impact that the plight of children and young people had on them, for instance: ‘I can stand almost anything, but the kids….’; ‘It is very hard to work with the children as most of them are the same age as mine’; and, ‘It is heartbreaking to know that these children will soon be on their own.’ Some nurses and social workers were haunted by experiences like the following: ‘Hospitals discharge near-dying patients, and I have to

58


tell small children how to take care of their dying parents. This is killing me’; ‘Children are not told at death what has happened to the parent. The parent just disappears. Maybe it is because we are afraid to talk to children — we do not know how.’ Social workers and especially teachers were deeply touched by the plight of AIDS orphans: ‘They [orphans] don’t have proper housing or maintenance of their homes. In many cases their homes are grabbed by greedy family members after their parents’ death and they have absolutely nowhere to go’; ‘Orphans are coming to school hungry. Many high school children do not have school uniforms or shoes’; and, ‘There is a girl of 11 years old in my class who is forced into prostitution. She is selling her body to look after herself and her siblings.’ Frustration with government processes A general theme running through the short essays was frustration with the South African government’s HIV/AIDS policy and processes. Strong criticism was expressed for the government’s reluctance to take a stand against dissident ‘therapists’ who confuse and endanger the lives of HIVpositive people, as well as criticism of the Minister of Health for ‘misrepresenting the important message of nutrition with her stories of beetroot and garlic.’ Feelings of bitterness underlie many of the comments in essays that the caregivers wrote, because they saw the results of these dissident ideas in practice — for example, patients discontinuing antiretroviral therapy (ART) or not taking Nevirapine, and the resultant deaths and new HIV infections. Many caregivers also expressed their frustration with the unavailability (or non-sustainability) of ART at smaller clinics, the lack of trained personnel to manage patients receiving ART, and a lack of resources to follow up patients who, for example, did not adhere to their medication regime. Concern about the development of drug resistance was evident in some answers: ‘Patients come back for their antiretrovirals, but we have to send them home because our stock hasn’t arrived yet. What does that say for adherence?’ There was also criticism of hospitals for discharging sick patients without any treatment, as well as of the government, which encourages home-based care without offering sufficient training or resources for family members who have to look after sick and dying loved ones: ‘There is no gloves or education for those taking care of infected relatives in our community. They still wash soiled linen and clothes with bare hands.’ A nurse wrote the following disturbing comment: ‘We have been seeing an increase in women aged 58–69 infected with HIV. I tend to wonder is it that these women are sexually active or do they get it from caring for infected relatives?’ Some social workers expressed their frustration with bureaucratic processes: ‘It is often impossible to acquire legal documentation such as death certificates, identity documents, etc. This means that many are excluded from receiving government subsidies.’ Frustration with clients and patients Many participants expressed frustration with their patients or clients, mainly for being in denial or for ‘not listening’ to the caregiver’s advice: ‘We want to get on with it — help the patient to cope, give health advice, want to start ART

Van Dyk

programmes — but the patient is in denial’; ‘They don’t believe their results and go for window-shopping, meaning that they go from one clinic to the other for testing. They waste time because we cannot do follow-up counselling’; ‘They don’t listen at all! Don’t they know that this is about their life and their death?’; ‘We explained to this pregnant woman that she has to take her Nevirapine at 36 weeks. When I asked her why she did not take it, she said that she lost it [the tablet] and was too ashamed to tell us!’; ‘It frustrates me when the patient gives in with life, they don’t care about their family or work; they drink and smoke worse than before. When you try to talk to the patient, they say — I am going to die anyway’; and, ‘The worst for me is when they refuse treatment. I feel like a complete failure!’ Patients adhering to traditional beliefs and visiting traditional healers were also a great source of frustration for many caregivers: ‘Most of my patients still believe that they are being bewitched by some jealous community members and they end up wasting money by slaughtering goats and cows so as to apologise to ancestors and so on,’ and ‘Some of my patients spread this disease all over. They believe in witchcraft and do not take precautions.’ And some social workers expressed frustration with clients who misused government grants: ‘Certain community members take on the care of children in order to receive the government’s subsidy, but then do not utilise this grant properly. They do it for the money, not the children,’ and ‘Safe-sex messages will never succeed in my community while government is giving grants to children till the age of 14 if the parents are not employed. Our people are not using condoms because they need babies so that they can get grants.’ Self-reported symptoms of occupational stress The mean score on the symptoms-of-stress scale was 60.12 (SD = 17.55; minimum score 35, maximum score 120). Age and occupation were the only socio-demographic variables significantly related to symptoms of occupational stress. Younger caregivers experienced significantly more stress-related symptoms than older caregivers (rs = –0.135, p < 0.05). A Kruskal-Wallis test showed that teachers or educators (mean rank 131.06) experienced significantly more occupational stress symptoms than counsellors (mean rank 114.75) and healthcare workers (mean rank 99.05); H(2) = 6.746, p = 0.034. The percentages of participants who indicated that they had experienced stress-related physical symptoms fairly often to very often in the last three months were: exhaustion and fatigue (38.6%), muscle aches (34.6%), insomnia (30.3%), headaches (27.4%), loss of appetite (24.3%), skin complaints (15.2%), gastro-intestinal disturbances (12.8%), recurring colds (10.8%), and shortness of breath (8.3%). Slightly more teachers (29.7%) complained about physical symptoms of stress than counsellors (25.3%) or healthcare workers (22.3%) (Figure 1). Stress-related behavioural symptoms experienced fairly often to very often in the last three months included: being easily moved to tears (26.1%), discouragement (25.5%), marked sadness (23.5%), feeling ‘touchy’ and irritable (23.6%), feeling bad tempered (20.6%), forgetfulness (20.3%), wanting to hide all the time (12.4%), and

59

participants had experienced the HIV/AIDS-related stressors, the more symptoms of occupational stress they had. There was also a significant relationship between feelings of depersonalisation and occupational stress symptoms on the one hand (rs = 0.339, p < 0.001), and the experience of HIV/AIDS-related stressors on the other hand (rs = 0.545, p < 0.001).

screaming and shouting (10.7%). More teachers (30.7%) complained about behavioural symptoms of stress than counsellors (22.2%) or healthcare workers (15.5%). Emotional or cognitive symptoms of stress included: frustration (35.9%), the need to prove one’s self (35%), anxiety (19.4%), confusion (16.6%), an empty feeling (13.6%), poor concentration (12.8%), self-doubt (11.6%), negative attitudes (11.6%), resentment (10.3%), loss of meaning (10%), and dull senses (8.7%). More teachers (23.5%) complained about emotional symptoms of stress than counsellors (20.8%) or healthcare workers (12.1%). Relational symptoms of stress included: deteriorating relationships with loved ones (18.3%), loneliness (12%), isolation (12%), distrust (12%), suspicion and paranoia (9.8%), lack of forgiveness from others and for others (8%), and avoiding commitment to care for others (7.9%). More teachers (16.6%) complained about relational problems than counsellors (14.8%) or healthcare workers (7.7%). Depersonalisation (an indicator of burnout) was experienced by 22.3% of the participants who said that they felt so overwhelmed and overworked that they saw their work as just another job, and by 21% who said they had a feeling of apathy as if they did not care for their patients/clients any more. Feelings of depersonalisation were especially expressed by teachers (36.5%), while similar proportions of healthcare workers and counsellors expressed depersonalisation (21.7% and 21.6%, respectively) (Figure 1). The 2item depersonalisation scale had a mean score of 5.29 (SD = 2.65) (minimum score 2, maximum score 12; Chronbach alpha reliability 0.579). Figure 1 shows the proportions of the three main occupational groups who had experienced the various types of occupational stressors. There was a high correlation between the scores on the symptoms-of-stress scale, and the scores on the HIV/AIDS-related stress-factor scale (r s = 0.490, p < 0.0001), indicating that the more

Occupational support Of the 211 participants who were not self-employed but worked for organisations or employers, 66.8% perceived the support they received as sufficient, but 33.2% felt that their employers did not support them sufficiently in their roles as HIV/AIDS caregivers. They claimed the following types of support were offered: supervision (33.7%), support groups (36.2%), debriefing (27.6%), in-house training (40%), regular breaks (19.7%), and other types of support (7.8%) such as motivation and achievement recognition. No significant difference was found between the three main occupational groups (healthcare workers, counsellors and teachers) in terms of the presence or absence of organisation or employer support. Caregivers who were supported by their organisations or employers produced significantly lower scores on the HIV/AIDS-related stress-factor scale (mean score 85.02, SD = 19.59) than participants who felt not supported (mean score 93.32, SD = 20.14); t(178) = –2.67, p = 0.008. There was a significant correlation between the number of different support services offered by an organisation or employer and lower scores on the HIV/AIDS-related stress-factor scale (rs = –0.152, p = 0.030). Personal coping mechanisms Caregivers were asked to give practical examples of what they did to manage their stress levels. The 193 participants who answered this question said they mainly made use of internal coping or problem-solving mechanisms: 33.3%

36.5

Healthcare workers PERCENTAGE OF RESPONDENTS



35

Counsellors 29.7

30 25

25.3

23.5

22.3

22.2

20.8

20

14.8

15

30.7

Teachers

16.6

21.7 21.6

15.5

12.1

10

7.7

5 Physical

Emotional

Relational Behavioural OCCUPATIONAL STRESSORS

Depersonalisation

Figure 1: Types of occupational stressors (average percentages) as experienced by three categories of HIV/AIDS caregivers


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were involved in social activities with friends or family members on a regular basis; 27.9% did regular physical exercise, such as walking, hiking or running; 25.1% listened to music, read, watched movies or played computer games; 19.3% took regular breaks or time-out and made sure they got enough rest and sleep; 16.9% attended support groups; 9.1% made use of relaxation activities, such as meditation and breathing exercises; 5.7% ate healthy foods and took supplements; 5.3% did extra courses or workshops; 3.2% shopped; and 1.6% cooked or cleaned for stress relief. Religious activities, such as praying and going to church, were chosen by 18.5% of the participants. Very few participants indicated negative coping mechanisms, with only 2% admittedly taking substances such as alcohol or pills to cope, and 1.6% binging or crying. One participant said she tried to cope by regularly phoning anonymous counselling lines such as Lifeline. The rewards and positive experience of caring for people with HIV Although not directly asked to do so, some participants reflected in their essays on the rewards they experienced in caring for people with HIV infection or AIDS illness. Nurses especially reported feelings of accomplishment, self-fulfilment and joy when seeing a patient improve. In some cases nurses reported feelings of having achieved something even when a patient died: ‘If I can lead them to God before they die, I feel great thankfulness and a deep feeling of really fulfilling my role on earth.’ A voluntary counselling and testing (VCT) counsellor said, ‘I only experience this job as rewarding when I give a negative [test] result and I can see how the client sees it as a new beginning. But there are not many chances for me to feel rewarded in this job.’ Not one of the teachers who participated in the study reported any rewards. One teacher wrote, ‘I can only feel despair and hopelessness. How can there be hope and rewards if our children are suffering?’ Discussion A profile of caregiving in the HIV/AIDS field in South Africa The HIV epidemic has placed a tremendous burden on caregivers in South Africa. The large number of newly diagnosed clients as well as the many sick and dying patients in hospitals makes it almost impossible for various categories caregivers not to work with HIV-infected clients or patients on a constant basis. This is demonstrated in the finding that 74% of the participating healthcare workers (mainly nurses), 55% of the counsellors, and 27% of the teachers or educators were working with HIV-positive patients or clients on a daily basis. However, as presented in the findings of Horstman & McKusick (1986), it was the intensity rather than the chronicity of patient contacts that most contributed to occupational stress and feelings of burnout. For instance, many counsellors reported counselling up to 15 clients per day (in most cases to give HIV-positive test results), while some nurses reported laying out so many bodies that they were in a perpetual state of mourning. One of the most shocking statements by a nurse was: ‘If I wanted to become an undertaker, I wouldn’t have

Van Dyk

studied nursing.’ The prevalence of HIV-related illnesses challenged caregivers to such a degree that they often questioned their own professional identities. Nurses described feelings of failure and impotence because most of their patients died; counsellors felt out of their depth because HIV/AIDS counselling required a different style of counselling than what they were used to; and teachers had by and large never before encountered so much suffering in the school environment. Feelings of professional impotence in the presence of HIV have also been described by various other researchers working in Africa (e.g. Fransman et al., 2000; Lehman & Zulu, 2005; Smit, 2005). Caregivers’ difficulty in coping was further exacerbated by the fact that many of the study participants were themselves HIV infected or cared for family members who were infected. Shisana et al. (2004) showed that many healthcare workers in South Africa face HIV issues from personal as well as professional aspects. According to that study, an estimated 15.7% of health workers employed in public and private health facilities in four South African provinces were themselves living with HIV in 2002; the likelihood was even higher for younger health workers, as the estimated HIV prevalence for 18–35year-old health workers was 20% (Shisana et al., 2004). The caregivers in the current study were profoundly touched by the social, economic, psychological and emotional aspects of HIV/AIDS care, but over-involvement and over-identification with their patients created serious problems, impacting on their caregiving abilities and general feelings of well-being. Nurses especially found it very hard to accept that they could not ‘rescue’ every patient/client, and that the old advice-giving procedure of the medical model did not guarantee a patient’s better health. Caregivers found it extremely difficult to cope with the overwhelming nature of HIV/AIDS. Feelings of frustration, hopelessness, disappointment and disheartenment were expressed because they felt they could make no difference to an epidemic that seemed out of control. In an era of antiretroviral therapy, it is a sad reflection on government commitment that caregivers generally feel that their patients are going to die despite their care efforts. This observation is congruent with findings by other southern African researchers who reported pervasive feelings of despair and futility “because no amount of good counselling or care will save their patients from death” (quoted in Lehmann & Zulu, 2005; see also Mazodze et al., 2004; Smit, 2005). Likewise, the caregivers further battled with bereavement and grief issues, substantiating the findings of many other researchers in the field who have reported burnout in HIV/AIDS healthcare workers because of bereavement overload (e.g. Piemme & Bolle, 1990; Strathdee et al., 1994; Ferreira et al., 2000). Caregivers in the current study also found it very difficult to set professional boundaries in contexts where extreme poverty and lack of support systems for clients were common. But probably the most stressful aspect of HIV/AIDS care, commented on by almost all the caregivers who participated in the study, was witnessing the effect of the epidemic on children. Seldom are children informed about a parent’s illness, while the responsibility of caring for a sick parent in the home often fell to them. The practical experi-



ences related by the caregivers indicate that a national plan to cope with orphans and vulnerable children is not in place everywhere — placing unrealistically high demands and responsibilities on nurses and teachers especially. The current study underscores the concern that the plight of children affected by HIV exacerbates the risk of burnout for HIV/AIDS caregivers in developing countries, as previously emphasised by Defilippi (2003). Many caregivers said that they could handle almost anything but the suffering of children, and that it was the struggle to cope with the plight of children that could ultimately make them leave their teaching or nursing profession. Government and private organisations would be wise to double their efforts to provide synergistic care for orphans and vulnerable children, and to monitor and treat pregnant women to keep mothers alive for their children for as long as possible. An interesting finding of the study pertains to three components relating to the effect of HIV/AIDS-related stigma. First, the caregivers clearly empathised with their HIV-positive clients’ experience of stigmatisation (primary stigmatisation). They related many stories about discriminatory attitudes towards people living with HIV, and about common social sanctions against them — supporting the findings of Kalichman and colleagues who developed a scale to measure AIDS-related stigma in South Africa (Kalichman & Simbayi, 2004; Kalichman, Simbayi, Jooste, Toefy, Cain, Cherry & Kagee, 2005). Secondly, the caregivers frequently reflected on the effect of HIV stigma on their personal lives (secondary stigmatisation); some expressed feeling shamed and traumatised by, for instance, ‘my community ostracising me for helping people in need’ (see also Smit, 2005). But the effect of stigmatisation most commented on by the caregivers was the occupational frustration they felt stemming from the restriction of confidentiality. Although they invariably understood the need for confidentiality, many believed that HIV/AIDS caregiving is hindered by stigma and confidentiality issues. Primary stigma is therefore only the beginning of the problem; beyond it lay associated stigma and its consequences. Caregivers understand this threat, yet dare not infringe on the privacy of their patients and clients. However, the danger of maintaining secrecy is that, as a result of non-disclosure, partners and babies can become infected, people may go untreated, emotional and physical support are not always given, people with HIV infection may die prematurely, and frustrated caregivers may leave their profession — all compounded by stigma. This is a pressing issue that needs to be addressed in a holistic manner. All the participating caregivers experienced HIV/AIDScare-related stress, irrespective of their age, sex, occupation, workplace or frequency of caring for patients/clients with HIV. Likewise, Bellani et al. (1996), Chamblers & Belcher (1994) and Dorz et al. (2003) recognised work stress as a function of the nature of the job rather than the person doing the job. Here, the South African healthcare workers, counsellors and educators (whose job descriptions and responsibilities varied greatly) found their HIV/AIDSrelated work equally stressful, signifying that such caregivers (irrespective of the type of caregiving) will continue to find it hard to cope with the physical, social,

61

psychological, emotional, political and economic effects of HIV on patients, clients, learners and students’ parents alike. This finding carries a clear message to organisations and employers: caregivers should be trained not only in how to manage HIV disease, but equipped with extra skills and a broader understanding of the effects of HIV on individuals, their community and society. Several stressors, inherent in HIV/AIDS-care and the typically difficult working conditions, caused symptoms of occupational stress in the participating caregivers. Almost all had experienced physical, behavioural, emotional or relational symptoms related to their HIV/AIDS-care work in the three months preceding the study. Other researchers (e.g. Armstrong et al., 2000; Ferreira et al., 2000; Mazodze et al., 2004; Lehmann & Zulu, 2005; Smit, 2005) have similarly found that caregivers who did not establish emotional distance from the problems inherent in the field eventually suffered from occupational stress and burnout. Caregivers who express feelings of depersonalisation are of special concern: to feel so overwhelmed and overworked that you no longer care for your patients/clients indicates burnout. Employers should note that especially the younger caregivers experienced occupational stress; they may be more vulnerable than older caregivers because they have not developed the resources to cope with the large demands of caring for people living with HIV (Bennett & Michie, 1991; Oktay, 1992; Van Servellen & Leake, 1994; Bellani et al., 1996; Maslanka, 1996; Gueritault-Chalvin, Kalichman, Demi & Peterson, 2000; Miller, 2000; Smitakestrin, 2004). In contrast to certain studies in developed countries, which found no difference in occupational stress levels between different occupational groups (e.g. Bellani et al., 1996), the educators (mainly teachers) in the current study experienced significantly higher levels of stress than the other groups. This may be attributable to the many changes currently taking place in the educational system in South Africa and the poor state of many government schools, but educators’ occupational stress is also likely to be a consequence of role expansion. Teachers must deal with the consequences of the HIV epidemic on the lives of young people in their care on a level previously not experienced. Further research is needed to determine why healthcare workers (mainly nurses) may experience less occupational stress than counsellors and teachers. One possible reason might be a job-related factor. Nurses, for example, seldom work in isolation, but more often as part of a team of health workers who are able to offer each other direct or indirect support; counsellors and teachers may have a more one-onone relationship with their clients or schoolchildren, but without sufficient employer or peer support. An alternate explanation is that the healthcare professions are recognised as high-stress areas where the need for support is generally acknowledged, while counsellors and teachers are not seen as caregivers in the traditional sense. The feelings of frustration, inadequacy, helplessness, depersonalisation and even anger expressed by many caregivers in the study could indicate an impending crisis in the helping professions in South Africa. Caregivers described how increases in their workload, role expansion


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and having to perform duties not previously required have placed a profound burden on them. Many caregivers felt unsupported by their employers, as they felt compelled into HIV/AIDS-care-related work without proper training, supervision or psychological support. They often expressed feeling left to work ‘in the dark, and not cared for at all.’ Caregivers’ frustration with their work situations recurs in the results of many other studies in Africa (e.g. Ross et al., 1999; Miller, 2000; Nzama & Welz, 2004; Lehmann & Zulu, 2005; Smit, 2005). For example, nurses in Smit’s study (2005) were concerned about deteriorating hospital infrastructure, insufficient medical equipment, a burgeoning workload, hospital understaffing, and lack of support from nursing managers and hospital administrators. Many caregivers in the current study (especially nurses) feared occupational exposure to HIV and expressed concern and anger with the employers who made it not possible to comply with universal precautions. The risk of accidental infection with HIV was often so stressful that many caregivers in the study said they preferred to live with the uncertainty of their HIV status rather than seek counselling or testing. Caregivers’ fear of contagion has been described by many previous researchers (e.g. Gerbert et al., 1988; Miller, 1995; Ungvarski & Flaskerud, 1999; Smit, 2005), and Lehmann & Zulu (2005) have described in detail the impact of this fear and its stress on family lives and sexual relationships. Leaders in government should take notice of caregivers’ frustration and anger. Caregivers who participated in the study were very critical of government processes that did not support proper HIV/AIDS management in the country. Many expressed bitterness because they saw the adverse effects of ambiguous policies on their patients every day. Others felt shamed and disempowered by the world’s view of South Africa’s Minister of Health and some of her ‘unofficial AIDS policies including garlic, beetroot and lemons.’ Nurses who participated in Smit’s study (2005, p. 26) also expressed concern about “government moving too slowly and in the mean time people are dying.” However, many caregivers in the current study notably did not appreciate the complexities of antiretroviral therapy (ART) (such as compliance, sustainability of medicine supplies and the potential development of resistant strains of HIV) (see also Ncayiyana, 2001 and 2004). In-house training of caregivers in all the different capacities where they work should include in-depth discussions on the complexities of ART in developing countries, and healthcare workers should be helped to appreciate that South Africa cannot afford to face drug-resistant HIV strains in the future, as is currently occurring with extreme-drug-resistant tuberculosis. The picture of occupational support to caregivers that emerged from the current study is a mixed one. While 66% of the participating caregivers indicated that they did receive one or another form of support from their employers, many others stated they were not supported at all or felt that the support was insufficient. Clearly, employer support is important to caregivers, empowering them to offer clients and patients invaluable service. Caregivers who received occupational support experienced the stress factors inherent in HIV/AIDS care as less stressful, perhaps because the caregivers supported by their organisation or

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employer developed more effective coping mechanisms. The ability to cope more efficiently with stressors (and, indirectly, the presence of employer support) was associated with fewer reported symptoms of occupational stress. Of special interest in this study is that the combination of support given, and not one specific type of support, contributed to the experience of less stress. Caregivers who were supported on more than one level (for example by supervision, training and debriefing) were better able to cope with the stress factors inherent in working in the HIV/AIDS field than the caregivers who received just one form of support (only supervision for example). The participants also tended to use personal coping mechanisms to further alleviate their experiences of stress. Although the findings are not generalisable to the general population of caregivers (these were participants who had voluntarily and actively sought to enrol in an HIV/AIDS counselling course), the needs expressed by the caregivers constitute helpful suggestions to organisations, employers and managers on how to care for their caregivers. Suggestions on how to care for caregivers Occupational burnout and its manifestations (e.g. despondency, lack of capacity to give compassionate care, development of a negative self-image and the belief that it is not possible to make a difference) must be prevented at all costs. This is important not only to provide proper counselling and care for clients and patients, but also to protect the physical and mental health of caregivers (Freeman, 2004). Miller (1995) warned that occupational stress among HIV/AIDS care workers may increase in future due to the growing number of people infected with HIV, dwindling resources, increasing involvement of whole communities in the epidemic, and unresolved problems with disease management (Miller, 1995). Miller’s warning still rings true; urgent steps are still needed to support HIV/AIDS caregivers. The term caregiver should be more broadly defined to include teachers who work with learners infected or affected by HIV. Five strategies for the prevention of occupational stress and burnout among HIV/AIDS caregivers are proposed: professional supervision and mentoring, emotional support and therapeutic counselling, stress reduction and coping skills, ongoing training, and a supportive working environment (see also Grossman & Silverstein, 1993; Miller, 2000; Skovholt, 2001; Oropeza, 2004; Van Dyk, 2005). Professional supervision and mentoring Although supervision is important to guide caregivers in their work, the hierarchical, managerial and evaluative nature of supervision tends to prevent caregivers from openly sharing their feelings and anxieties. The appointment of professional mentors with counselling skills (such as psychologists volunteering their services), who are responsible for the welfare of caregivers (and not for the quality or style of their work), is recommended. The serious problem of over-involvement and over-identification with patients or clients might be best overcome in a supportive, equal, non-evaluative atmosphere offered by mentors. Mentors can assist caregivers to form close



empathic and therapeutic relationships with their clients, and so avert relationships that are over-involved, isolated and stressful, and where the ability to return to an objective stance is lost. Mentors can offer debriefing opportunities, assist caregivers to respect the choices of their clients (even if these conflict with their own values), and convince them that they cannot take final responsibility for their clients’ lives. They could further assist caregivers to develop ways of maintaining boundaries between their professional and personal lives. Frequent mentoring sessions could provide a protected environment in which caregivers can debrief and discuss their caseload without violating their clients’ confidentiality. The results of the current study show that not being able to talk to anybody about their patients or clients placed substantial stress on caregivers, and thus opportunities to vent their feelings in a professional setting might bring tremendous relief. Mentors can also help caregivers re-evaluate their expectations and performance goals, develop selfawareness, and develop ways of caring for themselves and moderating their personal stress levels. Emotional support and therapeutic counselling Peer support groups are a great source of emotional support for caregivers since they allow colleagues to share concerns, problems and fears and to learn from the experiences of each other. Since younger caregivers in the current study especially battled with occupational stress, the suggestion of Gueritault-Chalvin et al. (2000) that younger members of staff be paired with more mature members who are able to provide advice and suggestions based on their experiences is relevant. Yet care should be taken not to overburden the more experienced caregivers, as they also need support. Caregivers should be encouraged to develop a social support system outside the workplace to relieve their stress, loneliness, depression and anxiety. A complicating factor is that many caregivers in Africa must care for HIVinfected loved ones at home or they may be HIV-infected themselves; support and therapeutic counselling could assist caregivers who need this. Emotional support and counselling should be offered to caregivers who find it overwhelming to cope with the death and dying of their patients. Many of the respondent caregivers showed signs of bereavement overload and commented that they did not get even a brief break to compose themselves between seeing different patients. An often overlooked reality is that school teachers act as HIV caregivers, but because they are not formally recognised as such, they are not supported. Caregivers — especially nurses — need emotional support and counselling in cases of occupational exposure to HIV. They should receive counselling and be assisted in their decisions to go for HIV testing, access PEP or receive ART as otherwise needed, and disclose their status to significant others. Stress reduction and coping skills The results indicate that caregivers struggle with many extremely stressful situations, including the devastating nature of the epidemic, the financial hardships of their patients, HIV stigma, the plight of children, and the high mortality rate of their patients. Especially the school

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teachers involved in HIV/AIDS education and care showed very high levels of occupational stress. It is vital for all types of caregivers to learn coping mechanisms to protect themselves against occupational stress and burnout. There is general agreement in the literature that caregivers who use internal coping strategies have a greater sense of control over work-related stressors and will suffer less burnout than caregivers who use external coping mechanisms (Bennett, 1992; Bennett et al., 1994; Gueritault-Chalvin et al., 2000). Lazarus & Folkman (1984), however, recommend that the coping strategy should fit the problem or stress being experienced. Caregivers ought to be trained to use internal coping strategies, also called problemfocused coping, when faced with situations that can be changed or controlled. When situations cannot be controlled, external (emotion-focused) coping may be more appropriate. Mentors can assist caregivers to recognise the coping strategies that they commonly use, and to change them if they do not alleviate stress. Caregivers must be trained to recognise the early signs of burnout or at least to consciously identify situations that they regularly have difficulty with, so that their own stress can be managed as it occurs. Caregivers should be trained in stress reduction techniques, such as relaxation exercises, breathing exercises, visualisation, imagery and meditation. Workplaces can establish discussion forums where caregivers can debate and vent their frustrations (and even come up with solutions) about stressful situations that they cannot change. For example, participants in the study often felt frustrated, powerless and impotent about certain government processes that did not allow competent management of HIV and AIDS. Ongoing training Training plays a central role in the management of stress and burnout in caregivers. Employers should recognise the importance of comprehensive training programmes; these can include initial training, refresher courses, workshops to upgrade skills, and on-the-job mentoring and coaching. The results show that the majority of the caregivers felt inadequately trained in HIV counselling skills. Especially nurses found it difficult to step out of a traditional role as advice-giver into the role of attentive listener; they found it hard to accept that their patients had a choice in their own treatment and frequently became frustrated with those who did not listen to them. Training in counselling skills (or special courses applying these skills to the HIV/AIDS context) has become important to some disciplines in which counselling has not been traditionally included. The finding that teachers experienced more symptoms of occupational stress than any of the other groups emphasises the importance of skills training for teachers on how to cope with the HIV epidemic in a school context. Other shortcomings in HIV-related care professions that were identified in the study (such as caregivers’ lack of skills for working with children and difficulty coping with stigma) can be rectified by offering innovative workshops where caregivers can acquire the skills to counsel children, manage stigma, and cope with long-term caregiver–patient relationships while maintaining a professional distance.


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A supportive working environment Caring for the caregiver should be integrated into the organisational culture (Defilippi, 2003). Managers or employers should consciously try to ensure that every effort is made to keep the stress of their staff within reasonable limits. In the first place, they should recognise and ‘normalise’ the inherent stress in HIV/AIDS-related caregiving, make it possible for caregivers to take regular breaks and time out, allow them the chance to do satisfying activities which may be unrelated to their primary work role, and, if possible, rotate them so that they can engage in non-HIVrelated duties (Bennett & Michie, 1991; Armstrong et al., 2000). Managers of the non-traditional caregiving professions, such as teaching, should realise the additional stress that HIV/AIDS care places on their employees and implement appropriate support systems. Managers should further make allowance for adequate personnel, salaries and vacation leave (and with the provision that leave cannot be accumulated). A potential problem in the nursing profession is that nurses often take on additional overtime work (often at other hospitals) to make ends meet. Employers should take note and address the detrimental effect of too heavy a workload on caregivers and try to allocate a manageable number of patients or clients to every caregiver per day. Working as a multidisciplinary team is an effective way of protecting staff from undue stress because it spreads the burden of care and responsibility. Communication between employers and caregivers should be open, and frequent meetings to discuss policy and share problems are important. Managers should create a supportive environment by assuring that a good work system is in place. Caregivers should know when and where to refer a client at all times, and where to go for help when they need it themselves. The problem of caregivers having to provide non-clinical services to their clients will be largely overcome if an appropriate system exists and if they know where to refer a client for particular help. Employers must provide a safe working environment, and should ensure that a clear policy for HIV testing, counselling and post-occupational exposure prophylaxis is in place. Since a lack of a sense of personal accomplishment is a problem often experienced by caregivers in the HIV/AIDS field (and a major contributor to burnout), various researchers have suggested that rewards in the form of recognition and support from management are essential (Bennett, Ross & Sunderland, 1996). Bennett et al. (1993, p. 50) suggest that managers can find ways to promote the psychosocial achievements of staff by “shifting away from the cure-based achievement measures traditionally inherent in health care,” while Gueritault-Chalvin et al. (2000, p. 159) suggest that staff members should be rewarded “for their attempts to provide palliative care, improve patient’s comfort and help with emotional problems.” Conclusions The results of the current study signify that various categories of caregivers in the HIV/AIDS field in South Africa feel overworked, overburdened and unsupported by their employers. The participating caregivers found their

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HIV/AIDS-related work particularly stressful, irrespective of the occupational roles they fulfilled, and they largely felt that they were not suitably trained to offer HIV/AIDS counselling. They battled with the overwhelming nature of the epidemic, the poverty of their clients, and the plight of children, while they tended to over-identify with their clients and patients and found it very difficult to set professional boundaries. They commonly struggled with bereavement overload, feared occupational exposure to HIV, found it difficult to cope with stigmatisation and confidentiality issues, and were generally frustrated with slow and ineffectual government processes. The majority of the caregivers reported symptoms of occupational stress and feelings of depersonalisation, and many indicated that they would like to leave their profession. To prevent burnout and job resignations, employers and health facility managers are urged to consider the warning of Lehmann & Zulu (2005, p. 47), namely that the psychological health of caregivers merits special concern: “If we expect our caregivers to continue to shoulder the disproportionate piece of the fight against the HIV epidemic, we have to hear their urgent call for help and support, and take seriously that we have to care for our caregivers.” Limitations and recommendations The findings of the study should be seen as preliminary and further studies are necessary to generalise the findings. One limitation of the study is that all the participants were voluntarily enrolled for an HIV/AIDS care and counselling course and were thus choosing to empower themselves with more knowledge to cope with HIV or AIDS in their workplaces. Therefore, it is not possible to surmise whether their various levels of occupational stress are higher or lower than those of the general population of caregivers. Further studies ought to investigate a broad sample of caregivers. Although we make suggestions for organisations, employers and managers on how to care for their caregivers, more research is needed to study the effects of occupational support and the challenges organisations and employers face to implement support programmes for caregivers — especially in resource-limited settings such as South Africa. The author — Alta van Dyk (Hons BSocSc, nursing sciences; PhD, psychology) is a research psychologist, lecturer, HIV/AIDS counsellor and educator, as well as a professional nurse. She is currently an associate professor in the Department of Psychology at UNISA where she teaches courses in HIV/AIDS care and counselling. She has published numerous articles on different aspects of HIV/AIDS (e.g. traditional African customs and beliefs in the context of HIV; psychosocial barriers to VCT in South Africa; South African school children’s perceptions of HIV/AIDS) and is the author of the book HIV/AIDS Care and Counselling: A Multidisciplinary Approach (Maskew Miller Longman, 2005).

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