This article was downloaded by: [York University Libraries] On: 04 March 2015, At: 15:15 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

African Journal of AIDS Research Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/raar20

Support groups for HIV-positive people in South Africa: Who joins, who does not, and why? Wenche Dageid

a

a

Department of Psychology, University of Oslo, Forskningsveien 3, PO Box 1094 Blindern, NO-0317 Oslo, Norway Author's email: Published online: 06 May 2014.

Click for updates To cite this article: Wenche Dageid (2014) Support groups for HIV-positive people in South Africa: Who joins, who does not, and why?, African Journal of AIDS Research, 13:1, 1-11, DOI: 10.2989/16085906.2014.886601 To link to this article: http://dx.doi.org/10.2989/16085906.2014.886601

PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions

African Journal of AIDS Research 2014, 13(1): 1–11 Printed in South Africa — All rights reserved

Copyright © NISC (Pty) Ltd

AJAR

ISSN 1608-5906 EISSN 1727-9445 http://dx.doi.org/10.2989/16085906.2014.886601

Support groups for HIV-positive people in South Africa: Who joins, who does not, and why? Wenche Dageid

Downloaded by [York University Libraries] at 15:15 04 March 2015

Department of Psychology, University of Oslo, Forskningsveien 3, PO Box 1094 Blindern, NO-0317 Oslo, Norway Author’s email: [email protected] Psychosocial health care for persons living with HIV/AIDS (PLWHA) is inadequate. Support groups for PLWHA could offer arenas where psychosocial issues are addressed, yet more knowledge is needed about those who join and those who do not join such groups. In this study, conducted in Limpopo province, South Africa, 49 PLWHA were asked about their motivations for joining a support group, while 22 PLWHA were asked about their reasons for not joining a support group. The most prevalent motivations for joining were to get information (59%) and social support (53%). The main reasons for not having joined were lack of knowledge (32%) and understanding (19%) about the support group and time constraints (19%). Physical symptoms and mental health were measured using the Stages of HIV Related Physical Symptoms & 20-item Symptom Checklist for HIV Infection and the General Health Questionnaire-28 (GHQ-28). Physical symptoms ranged from 0 to 17 with an average of 6. Mental distress was high, with 55% of members and 46% of non-members scoring above threshold levels. Support group members tended to be female, younger, to have tested due to pregnancy or out of concern, and to have grants as their sources of income. Non-members had tested due to illness, reported considerably more pain and were more likely to have no income. PLWHA experienced high mental, physical and social distress which must be addressed. Attention to gender differences is called for. While all members joined the support group to gain information and learn to cope, women were more likely to join to get support and deal with stress, while men joined to stay active and educate others. Support groups could be important links in the chain of comprehensive HIV health service delivery, given that they manage to recruit and meet the needs of PLWHA. Keywords: gender, General Health Questionnaire, HIV/AIDS, mental distress, motivation, physical symptoms, psychosocial health care

Introduction HIV continues to be a major health challenge in sub-Saharan Africa with an estimated 68% of all persons living with HIV/AIDS (PLWHA) located in the region (UNAIDS 2010). Among the challenges facing PLWHA are high prevalence of mental distress and disorders (Kaharuza et al. 2006, Freeman et al. 2007, Ndu et al. 2011) as well as a range of physical symptoms, psychosocial challenges, poor quality of life, and lack of adequate health services (Adewuya et al. 2007, Freeman et al. 2008, Myer et al. 2008, Brandt 2009). Despite the high prevalence of HIV/AIDS in the region and the co-morbidity with mental distress and psychosocial disadvantages, mental health services in sub-Saharan Africa generally have low priority (Skeen et al. 2010). In 2005, the World Health Organization (WHO) reported that up to 40% of African countries had no allocated budget for mental health and no or inadequate mental health care training for primary health care staff, whilst more than half had no mental health care services based in the communities (WHO 2005). The most common psychosocial support service for PLWHA in community settings in South Africa is the voluntary counselling and testing for HIV (VCT), which includes pre- and post-test counselling of

short durations (Magongoet al. 2002). The role of VCT as a therapeutic support intervention is limited (Freeman et al. 2007, Haffejee et al. 2010). As PLWHA generally live longer due to the roll-out of ART in the region, and need to face a range of psychosocial challenges and adverse life situations (Williams et al. 2007), the need for ongoing counselling and other forms of psychosocial support is crucial (Freeman et al. 2007, Simbayi et al. 2007, Mundell et al. 2011). While there is need to strengthen services at a tertiary level, particularly for severe cases of physical and mental disorder, treatment in community and primary health care settings has the potential to reach more people faster and is thus of great importance (Breuer et al. 2011). Support groups for PLWHA offer an opportunity for ongoing psychosocial support that is insufficiently covered in the VCT setting (Haffejee et al. 2010). Such groups are often initiated by a professional person (e.g. a counsellor, psychologist, nurse or social worker) within a formal structure such as a primary health care clinic or hospital clinic (Uys and Cameron 2003). Literature from different countries in sub-Saharan Africa shows that attending psychosocial support groups and programmes could improve coping, wellbeing and mental health among PLWHA (Freeman et al. 2007, Mundell et al. 2011). Support groups provide valuable social and emotional support and

African Journal of AIDS Research is co-published by NISC (Pty) Ltd and Routledge, Taylor & Francis Group

Downloaded by [York University Libraries] at 15:15 04 March 2015

2

represent forums where those living with HIV can share their personal experiences, fears and concerns. Being part of a support group could reduce isolation, promote acceptance, improve self-confidence, encourage new friendships and networks, and assist in disclosure (Krabbendam et al. 1998, Mabunda 2004, Heyer et al. 2010, Kako et al. 2011, Mundell et al. 2011). Being part of a support group may also facilitate access to or offer individuals much needed resources like medication, food, income generation, and information and knowledge about behaviour changes and on how to handle their situation (Mabunda 2004, Heyer et al. 2010). Despite the many potential benefits of joining HIV support groups, relatively few PLWHA, and in particular few men, join (Reece et al. 2007, Ndu et al. 2011). Studies conducted in sub-Saharan Africa have found that most support group attendees are females of child-bearing age; usually in their thirties, unemployed and with relatively low levels of education (Reece et al. 2007, Grønlie et al. 2011). Those who attend support groups have also been characterised as experiencing higher psychological distress (Freeman et al. 2007, Brandt 2009) and reporting lower social support (Visser and Mundell 2008) than those who do not attend support groups. Men who join support groups are usually older, more likely to be married, and to report more physical symptoms and lower CD4 counts than women who join support groups (Shacham et al. 2008). Several motivations have been identified for why HIV-positive individuals join support groups. Social and emotional support, need for information concerning the illness, being referred by a healthcare worker, access to medication and grants, changing family and friends’ attitude towards the illness, dealing with fear of being stigmatised, and making friends all seem to be important motivations when PLWHA decide to join support groups (Liamputtong et al. 2009, Heyer et al. 2010, Grønlie et al. 2011). However, there is still insufficient knowledge about why PLWHA decide to join or not to join support groups. In particular, the differences in women’s and men’s motivations for joining are not explored. This is an important gap in knowledge, since several studies have found that health seeking behaviour in men and women differs (Snow et al. 2010, Skovdal et al. 2011a). Knowing more about what characterises and is important to PLWHA who do and who do not join support groups could assist policy makers and practitioners create optimal support interventions in primary health care settings. The aim of this article is to describe and compare the characteristics and motivations to join and reasons to not join HIV support groups among a sample of male and female South African PLWHA, and to draw implications for HIV/AIDS care and support practices and policies. Methods Ethical approval was obtained from the Limpopo Department of Health and Welfare and The National Committees for Research Ethics in Norway (REK). Procedure The research reported in this article was part of a larger, longitudinal study on psychosocial support interventions for

Dageid

PLWHA in a semi-rural community in the Limpopo province, South Africa. In the initial (pre-test) phase of the project, 250 participants (186 women and 64 men) were recruited through the weekly HIV clinic at the regional hospital. The aims of this baseline investigation were to assess the physical and mental health status of the participants, to learn about their background and demographic characteristics, and to get to know their stories about circumstances and challenges of being infected with HIV, ways of coping, social support and present needs. A further aim was to investigate the need for a support group and what kind of activities the PLWHA would like to see included in a support group. The project was carried out using a pre-post design, with measures of mental and physical health given in phase 1 being repeated after the support group intervention, during the end-evaluation period. There was no randomisation; convenience sampling was used. The 250 participants were recruited by health workers at the HIV clinic. All PLWHA who attended the clinic were given a short, oral description of the research and a request for participation during their VCT sessions. This meant that those willing to participate would first attend VCT, then medical check-up, and finally join the research session in one day. The number of PLWHA who declined the request is unknown. The research sessions consisted of individual interviews, a demographic survey and two health questionnaires. All sessions were facilitated by an assistant who spoke Northern Sotho as well as English. At the end of each individual research session, the participant was informed about the support group for PLWHA that was being initiated at the nearby primary health care clinic, and was invited to join the group. Of the 250 participants, 67 (27%) decided to join the support group. Phase 2 of the project saw the establishment of the support group, with implementation and monitoring of interventions aimed at fostering psychosocial functioning and wellbeing. The interventions were based on the assessment of needs carried out in the first phase, and took place over a period of almost three years. Towards the end of the research project, an end-evaluation was conducted. For various reasons, some members had quit the support group, and new members had joined. This study is based on findings from the 49 members who were continuously involved in the support group over the 3-year period, and who were present at the meeting where data about motivations were collected. Furthermore, as a comparison 22 of the participants from phase 1 who had decided not to join the support group (non-members) were identified through their regular check-ups at the clinic during the period of the end-evaluation. The study team also tried to contact non-members using cell phone numbers that were collected in phase 1. However, few persons were reached in this way. Non-members were asked to provide reasons for not joining the support group. More information on the 250 participants, the intervention and evaluation can be found in Dageid and Duckert 2007. For the purpose of this article, the reported results on physical and mental health for all participants are pre-test results.

Downloaded by [York University Libraries] at 15:15 04 March 2015

African Journal of AIDS Research 2014, 13(1): 1–11

Measures Motivations for joining and reasons for not joining the support group The support group met monthly over a period of three years. During a support group meeting towards the end of the project period, the 49 members present were asked about the motivations they had for joining the support group. Instructions were given collectively, after which each participant received a questionnaire (in English) to be filled in. The questions were open-ended and more than one motivation could be given. Most participants completed the questionnaire on their own, however, individual assistance was provided by the author and the assistant when needed. At the evaluation towards the end of the project period, over a period of 1 month, 22 non-members who had taken part in the initial interviewing phase were identified during their appointments at the hospital HIV clinic. During individual sessions with the author and the assistant, non-members were asked to answer the following open-ended question: ‘Why did you decide not to take part in the support group?’ More than one reason could be given. Physical health Because of difficulties in accessing the full medical report, use of antiretroviral medication, or CD4 counts from each participant, this study relied on self-report of symptoms, using The Stages of HIV Related Physical Symptoms & 20-item Symptom Checklist for HIV Infection (Gorman et al. 1991). Studies of self-report of symptoms in PLWHA have generally supported the validity of this method, but also indicated a moderate accuracy as well as a tendency to under-report symptoms when compared to medical examination (Patton 2001, Wu et al. 2004). The following symptoms were added: tuberculosis (TB), fatigue and pain. TB is widespread in South Africa, and is often associated with HIV/AIDS. Fatigue and pain have been reported as prevalent and important, yet often overlooked complaints in patients with HIV/AIDS (Darko et al. 1992, Marcus et al. 2000, Voss et al. 2007). All symptoms were reported as present or non-present at any time in life/over the last months/years (as relevant). The reported symptoms, personal appearance, and medical reports (where available) were compared to classification and diagnostic criteria information (Castro et al. 1993) and an HIV stage from 1 (asymptomatic) to 4 (AIDS) was consequently assigned to each participant. Mental health The General Health Questionnaire 28 (GHQ-28) is a popular screening instrument for detecting mental illness in a community sample and consists of 28 items divided into 4 sub-scales: somatic symptoms, anxiety and insomnia, social dysfunction, and severe depression (Goldberg and Hillier 1979). The GHQ-28 is also reported to work well in developing countries (Goldberg et al. 1997). For comparison purposes, each item was scored on a Likert scale ranging from 0 to 3, with higher scores indicating higher mental distress. Recommended threshold for the GHQ-28 has varied between 3/4 and 8/9 using the Likert method (Furukawa et al. 2001). The threshold of 7/8 gave the best sensitivity and specificity results in a validation of the

3

Setswana version conducted in Botswana (Segopolo et al. 2009), and this threshold seemed fitting for this study. Thus, in this study a total score of up to 28 (1 or less for each item, up to 7 for each sub-scale) indicated ‘normal functioning’, whereas higher scores indicated the presence of mental distress. Chronbach’s alpha of the total GHQ-28 in this study was 0.88 (somatic sub-scale 0.84, anxiety and insomnia 0.78, social dysfunction 0.79, and severe depression 0.82). Data analysis Motivations for joining the support group and reasons for not joining were analysed qualitatively into categories using thematic analysis (Braun and Clarke 2006). Demographic background variables, mental health and physical health were analysed using descriptive procedures in SPSS version 20. To explore differences between members and non-members on background variables and mental and physical health variables, t-tests and chi-square were used. Based on previous research that has found a marked gender difference in support group attendance, differences between the four groups of female members, male members, female non-members and male non-members were also explored using ANOVA and chi-square. All p-values were computed using two-tailed tests of significance (p < 0.05). Results Motivations for joining the support group Most of the support group members reported more than one motivation for joining the support group, indicating that motivations were interconnected. In particular, motivations relating to the need for information and social support, and motivations related to dealing with stress, learning how to cope and social support were connected. The questions on motivations were, however, not followed by probes, so the specific interconnectedness between and within categories could not be fully explored. The five categories of motivations and examples of statements are listed in Table 1. Looking for information and learning how to cope was almost equally endorsed by the women and the men in this study. For the other motivations, there were clear gender differences. The women were more likely than men to report dealing with stress and wanting social support as motivations. The men were significantly more motivated by the chance of empowerment through work and community outreach than women were, and the motivation of educating others and disclosing in public was endorsed by two participants only, both men. Reasons for not joining the support group All 22 participants gave reasons for not having joined, however, only three persons mentioned overlapping reasons. One woman reported lack of knowledge about the support group as well as lack of money for transport to attend the meetings. Another woman reported having to care for a newborn baby and also lack of money for transport to attend meetings. One man reported not having understood what the support group was all about, and also not seeing the benefit of joining. All other persons reported

4

Downloaded by [York University Libraries] at 15:15 04 March 2015

one reason only. Time constraints due to other commitments, reported by four people, included being in paid work and running a ‘spaza’ shop (informal convenience shop), going to school, and actively looking for work. Two women had not joined due to own illness and the illness of a child. The reason most often mentioned for not having joined the support group was lack of knowledge about the existence of the support group (n = 7). All reasons given for not joining can be found in Table 2, summarised and broken down in gender. The reasons ‘family member or self being too ill’, ‘stigma and discrimination’, ‘had to ask permission from husband’ and ‘language barriers’ were reported by women only. After being re-informed about the support group in the evaluation phase, 10 people (45%, seven women and three men) indicated that they would now like to join the group. For eight of the would-be support group members, lack of

Dageid

knowledge, or not having understood the information about the support group given in phase 1 were the reasons for not having joined during that phase of the project. The woman who did not understand Northern Sotho (Sepedi) was prepared to join upon learning that a person from her own language group, who was also fluent in Northern Sotho, was a member. Finally, the woman who had been hindered from joining the support group in phase 1 due to taking care of a sick child was now able to join after the sad death of the child. Participant characteristics The sample consisted of in all 71 black African, HIV-positive persons. The support group members (n = 49) were 36 women and 13 men. Average age was 31.7 years (SD = 7.42, range 18–52); education ranged from 1 to 15

Table 1: Frequency of reported motivations for joining the support group (n = 49) Motivations Information, advice, sharing knowledge

Example of statements ‘I wanted more information about HIV/AIDS from different places and learn different ideas about HIV/AIDS’ ‘I wanted to learn how about HIV and other diseases’ ‘I wanted to understand my status and know the things I can expect’ To get social ‘I wanted support from other people like me who are support, belonging, infected’ meet others ‘I joined to feel I am not alone’ ‘I wanted to meet people like myself’ To learn how to ‘I wanted to cope with my status and my baby’s status, cope with HIV because he is also HIV positive’ ‘I had so many unresolved issues I could not solve myself’ ‘I saw some progress in the lifestyle of people whom I know; they did cope and get well’ To deal with stress ‘I was stressed about my status’ caused by living with ‘I was confused and stressed, I was thinking of death’ HIV ‘I was having stress and depression; in a support group I won’t be stressed’ Empowerment, to ‘I wanted to do something like a project, where I can run keep busy, get work some vegetables for people who are living with HIV/AIDS’ opportunities ‘I wanted to keep myself busy all the time’ ‘I want to empower myself’ Educate others, ‘I want to inform people about this disease, that it exists. I engage in am ready to tell others. We need to expose ourselves’ community outreach, ‘The counsellor told me how important it [outreach] is; and public disclosure I will share some ideas’

n 29

% 59

Women 21

% 58

Men 8

% 62

p ns

26

53

21

58

5

39

ns

17

35

13

36

4

31

ns

9

18

8

22

1

8

ns

5

10

1

3

4

31

0.014

2

4

0

0

2

15

ns

Note: Each participant was free to report more than one motivation; ns = not significant, % given for women and men is within gender. Table 2: Frequency of reported reasons for not joining the support group (n = 22) Reason for not joining Did not know of the existence of the support group Did not understand what a support group is or does Time constraints due to work/other commitments Did not see how the group would benefit me Money/transport problems Family member or self being too ill Stigma and discrimination Had to ask permission from partner Language barriers (not understanding Northern Sotho) Note: Each participant was free to report more than one reason.

Women 5 2 2 2 2 2 1 1 1

Men 2 2 2 1 1 0 0 0 0

n 7 4 4 3 3 2 1 1 1

% 32 19 19 14 14 9 5 5 5

Downloaded by [York University Libraries] at 15:15 04 March 2015

African Journal of AIDS Research 2014, 13(1): 1–11

years (M = 9.5 years, SD = 3.20); and mean income was ZAR 305 per month (SD = 428.74, range ZAR 0–1500). The members had known about their HIV diagnosis for 2.8 years on average (SD = 2.12, range 0–11). The number of children per individual ranged from none to 6 (M = 2, SD = 1.50), and the average age when one had the first child was 20.4 years (SD = 3.62, range 15–31). The 15 females and 7 males who in phase 1 had declined to join the support group were on average 37 years old (SD = 9.78, range 20–62). Education ranged from 1 to 14 years (M = 8.1 years, SD = 3.24), and mean income was ZAR 272 per month (SD = 672, range ZAR 0–2500). The non-members had known about their HIV diagnosis for 2.4 years on average (SD = 1.87, range 0–7). The non-members had between none and nine children (M = 2.6, SD =2.04), and the average age when one had the first child was 20.5 years (SD = 4.31, range 16–31). The only significant difference between members and non-members on continuous demographic variables was in relation to age. Support group members were significantly younger (M = 31.9, SE = 1.19) than non-members (M = 37.1, SD = 2.08), (t = 2.292, df = 62, p = 0.025). Categorical demographic characteristics of members and non-members are displayed in Table 3. The characteristics that significantly differed between the groups were pain (Cramer’s V = 0.272), source of income (Cramer’s V = 0.307) and reason for testing (Cramer’s V = 0.262), the Cramer’s V all indicating a medium effect size. Almost three-quarters of the PLWHA who decided not to join the support group reported pain at the time of entering the study (phase 1), compared to less than half of those who decided to become support group members. Those who joined the support group were more likely to live off grants (35%), while non-members were more likely to report no income (73%) or to hold paid employment (18%). Almost twice as many non-members (64%) had tested due to own illness as compared to members, for whom pregnancy and a general health concern constituted 55% of reasons for testing. Physical health The sample was relatively ill, with 26 members (53%) and 14 non-members (64%) reporting symptoms indicative of an advanced HIV infection or AIDS. Only six participants were asymptomatic at the time of the assessment. The average number of reported physical symptoms were 6.4 for members (SD = 3.94, range 0–17) and 6.7 (SD = 3.70, range 2–15) for non-members. The most frequently reported symptoms were sexually transmitted diseases, persistent cough, weight loss and diarrhoea (see Table 4). There were no significant differences in reported number of symptoms between members and non-members. Mental health The high mean scores on the GHQ-28 indicated a high presence of mental distress in both members and non-members. A total of 55% (n = 27) of the members and 46% (n = 10) of the non-members scored above 28 on the total scale. Both members and non-members scored on average above threshold levels on the somatic and anxiety and insomnia sub-scales, indicating mental distress at

5

levels that would need clinical attention. Non-members scored lower than members on all sub-scales except the somatic sub-scale (see Table 5). There were no significant differences between members and non-members on GHQ-28 and its sub-scales. Gender and group differences Comparing the four groups of female members, male members, female non-members and male non-members, age came out as significantly different [F(3, 67) = 4.96, p = 0.004]. Post-hoc comparisons indicated that only two groups differed significantly; female members were younger (M = 30.2, SD = 7.17) than male non-members (M = 41.3, SD = 10.81, p = 0.007). Age when one had the first child also differed between the groups [F(3, 67) = 4.11, p = 0.011]. Post-hoc comparisons showed that the significant difference were between female members (M = 19.5, SD = 2.97) and male members (M = 23.3, SD = 4.27, p = 0.038). The scores on the GHQ-28 social dysfunction sub-scale significantly differed between the groups [F(3, 69) = 4.07, p = 0.010]. Here, female non-members (M = 2.4, SD = 2.24) scored significantly lower than female members (M = 6.6, SD = 5.24, p = 0.033), and female non-members also scored lower on social dysfunction than male non-members (M = 8.9, SD = 6.18, p = 0.021). Male members average score was 4.8 (SD = 3.32). The chi-square tests indicated a significant association between source of income, gender and group, χ²(6, 68) = 14.27, p = 0.027. The effect size reported, Cramer’s V = 0.324, indicates a medium effect size. Most of the grant holders are male (46%) or female (32%) support group members, while a higher proportion of the male non-members (43 %) reported paid work as their source of income, and female non-members (79%) had no income more often than the other groups. Reasons for testing also differed between the groups, χ²(6, 68) = 15.37, p = 0.018. Most female members tested due to pregnancy (35%) and because of being concerned (32%), while most female (71%) and male (86%) non-members tested due to own or partner’s illness. Most male members tested due to own illness (44%) and because of being concerned (31%). None of the physical symptoms differed significantly between groups. There was a tendency for female and male members to report a higher number of symptoms than non-members did. However, male non-members more often reported serious symptoms such as diarrhoea, pneumonia, fatigue and pain, in addition to a higher average score on the total GHQ-28. Discussion This study had some limitations. The groups were small and self-selected and may have thus reflected a marked referral bias, which might explain a host of findings, including the reported high rates of mental distress and physical symptoms. Further, the GHQ-28 is a screening tool, and comparison of levels of mental distress with other studies which have used diagnostic tools and structured interviews (Adewuya et al. 2007, Freeman et al. 2007) may thus be limited. The fact that participants were asked to remember their motivations for joining retrospectively

6

Dageid

after a long period of time means that there could be a recall bias. The qualitative parts of the study (motivations to join and reasons for not joining) were collected using open-ended questionnaires, and no probes or follow-ups

were conducted. This limits the in-depth understanding of the findings regarding reasons for joining or not joining the support group, particularly of the interconnectedness between themes and categories. The small samples also

Table 3: Demographic characteristics of and differences between support group members and non-members

Downloaded by [York University Libraries] at 15:15 04 March 2015

Characteristic Gender Female Male Relationship status Single Steady relationship Married Divorced or separated Widowed Missing Source of income No income Receive grant Paid employment Missing HIV status of child HIV positive HIV negative Don’t know/not tested Missing/ not applicable Reason for testing I was ill Partner was ill or died Pregnant Just concerned Missing Reported source of infection Casual/multiple partner Regular partner Blood, fluids, witchcraft Don’t know/no idea Concern or need Money/work House Food Social support Medical treatment/long life Missing HIV stage Asymptomatic Limited symptoms Serious symptoms AIDS Pain Yes No Missing Fatigue Yes No Missing Tuberculosis Yes No Missing

Members

Non-members n = 22 %

n = 49

%

36 13

74 26

15 7

68 32

20 10 11 3 3 2

41 20 23 6 6 4

7 1 8 2 4

32 5 36 9 18

27 17 3 2

55 35 6 4

16 2 4

73 9 18

4 20 17 8

8 41 35 16

0 13 7 2

0 59 3 9

18 2 12 15 2

37 4 24 31 4

14 0 2 4 2

64 0 9 18 9

26 15 4 4

53 31 8 8

8 9 3 2

36 41 14 9

23 3 8 6 6 3

48 6 16 12 12 6

8 3 2 1 6 2

36 14 9 5 27 9

5 18 19 7

10 37 39 14

1 7 11 3

5 32 50 14

20 19 10

41 39 20

16 5 1

73 22 5

14 26 9

29 53 18

10 9 3

45 41 14

9 28 7

18 68 14

1 16 5

5 73 22

Note: All presented scores are pre-test, phase 1.

χ²

p

0.34

0.571

5.10

0.277

6.02

0.049

2.48

0.290

4.40

0.036

1.66

0.647

7.54

0.183

1.27

0.736

4.14

0.038

1.93

0.165

2.63

0.114

Downloaded by [York University Libraries] at 15:15 04 March 2015

African Journal of AIDS Research 2014, 13(1): 1–11

7

limit the power of statistical analysis. Although caution must be exercised when interpreting the findings due to the limitations mentioned the results may still have implications for HIV care and support policy and practices. The motivations of the HIV support group members in this study are similar to those reported in other studies conducted in sub-Saharan Africa (Heyer et al. 2010, Grønlie et al. 2011, Ndu et al. 2011). To receive information and social support were by far the most prevalent motivations, while more externally oriented motivations such as empowerment and educating others were mentioned by few. These findings indicate that the function of a support group is mainly at the psychosocial level and for individual and group benefit. Given the high prevalence of HIV/AIDS and the related mental, physical and social distress, more HIV healthcare resources should be channelled to psychosocial support interventions in South Africa (Breuer et al. 2011). Relatively few PLWHA join HIV support groups and the groups generally attract far more women than men (Reece et al. 2007, Ndu et al. 2011). Almost three out of four support group members in this study were women. Women who joined the support group were far more likely than men

to be motivated by a need for social support and to deal with stress. The male support group members were more motivated by empowerment, work opportunities, community outreach and public disclosure than female members were. Despite being under pressure in today’s South Africa, the traditional hegemony of masculine ideals (Morell 2001) still dictates that a man should earn an income to provide for his family. Men are also expected to be actively seeking solutions to problems, including health problems (Mfecane 2012). Men living with HIV/AIDS would want to be actively involved in support group activities, rather than solve their problems through talking (Dageid et al. 2012). The marked gendered differences in motivations found in this study suggest that separate support groups, for women and men respectively could be needed. Women would probably be attracted to a support group that deals with psychosocial issues through talking and sharing experiences; incorporating income generation and other forms of tangible means of empowerment could be a way of attracting men to support groups. The motivations of information seeking and learning how to cope were, however, equally endorsed by women and men, and could thus provide a common platform on which to build support groups that will reach all.

Table 4: Prevalence of physical symptoms among support group members and non-members Members

Non-members

Physical symptom

n

%

n

%

Sexually transmitted disease (STD) Weight loss Fever Persistent cough Lymphadenopathy Night sweats Non-allergic body rash Diarrhoea Sore throat Easy bruising Shortness of breath Sinusitis Oral candidasis/thrush Rash/scaling around eyes Meningitis Oral leukoplakia Allergic body rash Shingles Hair loss Pneumonia

28 26 25 25 24 24 22 21 17 16 16 15 14 10 9 9 8 8 4 1

57 53 51 51 49 49 45 43 35 33 33 31 29 20 18 18 16 16 8 2

12 11 7 12 9 8 8 11 6 4 6 6 7 2 3 1 3 3 0 1

55 50 32 55 41 36 36 50 27 18 27 27 32 9 14 5 14 14 0 5

Note: Percentages vary due to missing observations for some symptoms

Table 5: Scores on the GHQ-28 for members and non-members

Characteristic Total score on GHQ Scores on GHQ sub-scales Somatic symptoms Anxiety and insomnia Social dysfunction Depression Note: All presented scores are pre-test, phase 1

Members n = 49 Mean (SD) Min–Max 30.3 (17.27) 0–79 8.8 (6.29) 9.7 (6.01) 6.1 (4.84) 5.7 (5.77)

0–21 0–21 0–21 0–21

Non-members n = 22 Mean (SD) Min–Max 28.6 (19.72) 0–67 10.3 (6.48) 9.1 (7.04) 4.4 (4.91) 4.7 (4.58)

0–21 0–21 0–18 0–17

Downloaded by [York University Libraries] at 15:15 04 March 2015

8

The main reason given for not having joined was lack of knowledge of the existence of the support group. Another prevalent reason for not joining was that the participants had not understood what a support group is or does during the initial presentation at the beginning of the project. This is remarkable, since all PLWHA who were approached in this study received the same information at project start. These findings attest to the need for repeating HIV-related information over time to ensure that information is received, absorbed and understood by PLWHA (Lindsey 2003, Haffejee et al. 2010). It also indicates that VCT and the ongoing counselling provided at clinic and hospital level must be accompanied by broader psychosocial support interventions to meet the needs of PLWHA. HIV positive individuals are likely to have among others emotional, physical, practical and legal issues to deal with, and may thus not be able to register all information or make use of the psychosocial counselling given at one particular, time-constrained counselling session (Richter et al. 2001). The participants in this study lived under stressful circumstances. Living with HIV and accompanying physical illness, high mental distress, and social problems such as unemployment, financial insecurity, inadequate housing and lack of basic services meant that day-to-day life would be preoccupied with satisfying basic needs. Time constraints for different reasons such as money and transport problems, own or close family members’ illness and the feeling that the support group held little benefit for oneself were thus expected reasons for not joining. Those participants who joined the support group did in fact differ in terms of income, with more members than non-members having a source of income, mainly from grants. Reasons for testing also differed significantly between members and non-members, with members reporting pregnancy and ‘just concerned’ more often than non-members. Non-members were more likely to have tested due to own illness. Members were also significantly younger than non-members. These findings indicate that the support group members in this study consisted largely of young women who had at least one child and who received grants. To receive a regular grant, albeit a small amount, could be beneficial for support group attendance because the grant holder does not need to spend time at a work place or looking for an income. In accordance with findings from previous studies (Kaharuza et al. 2006, Adewuya et al. 2007, Freeman et al. 2007, Myer et al. 2008), the results of this study demonstrated high levels of mental distress among PLWHA. Both members and non-members scored on average above threshold levels for mental distress on the overall GHQ-28 as well as on the somatic and anxiety and insomnia sub-scales. Members scored higher than non-members on the overall GHQ-28 as well as on the anxiety and insomnia, social dysfunction and depression sub-scales. This finding highlights mental distress among PLWHA as an important motivation for joining support groups. The presence of physical symptoms and complaints among PLWHAs, both members and non-members was also high. There is a possibility that the prevalence of mental distress, in particular related to somatisation and social dysfunction, may have been inflated by the somatic

Dageid

symptoms associated with HIV/AIDS. Recommended ‘gold standard’ thresholds for the GHQ-28 have not been defined for patients with various chronic medical conditions, mainly because reported somatic symptoms on the GHQ might be due to physical illness or use of medication rather than psychological morbidity (Sternhell and Corr 2002). Non-members were on average physically sicker than members were. Pain was almost twice as likely to be reported by non-members as by members. The numbers presented in this study were baseline results; with disease progression it is likely that pain would become even more pronounced, particularly in the non-member group due to its more advanced HIV stage and lack of ARV treatment (a finding that could also partly explain the difficulty in identifying non-members that could participate in the end-evaluation, three years after the start of the project). It is likely that experienced pain, more so than the number of physical symptoms, restrains an individual’s ability to function and has an impact on wellbeing. A person in great pain is unlikely to get involved in most activities, including being a support group member. In a review article, Prince et al. (2007) reported that medically unexplained somatic symptoms, such as fatigue and pain, are strongly associated with mental distress. In a primary health care setting, this implies a need to assess the possible links between physical symptoms and mental distress, paying particular attention to alleviating ‘non-specific’ symptoms such as pain, to improve a person’s wellbeing and ability to perform activities of daily life, including taking part in psychosocial support activities. Exploring differences between the four categories of gender and groups, most findings reflected the differences already found between those who joined and those who did not join the support group, irrespective of gender. Some findings, however, added to the member–non-member distinction. Male support group members reported receiving a grant more often than anyone in the other categories. They also reported a higher number of physical symptoms. However, male non-members reported more serious symptoms, had a social dysfunction score far higher than the other groups, were older, and yet were more often than the others in paid work. The last finding was probably unrelated to physical illness, due to the overall small numbers of participants who were employed Dageid and Duckert 2007. It could be that the traditional notions of masculine identity that portray men as strong, healthy and productive (Jarrett et al. 2007, Ratele 2008) kept men from admitting that they were sick, vulnerable, and in need of health services, including support groups. Female non-members, however, were more likely to have no income, and to report much lower levels of social dysfunction than the other three groups. These findings could possibly indicate that those women who had no income, yet reported being relatively healthy mentally and physically, would not join support groups due to other activities such as looking for paid jobs or taking care of the family. It could also be that women who did not join the support group already had the level of social support they needed from sources other than the support group. There is also a possibility that some of the women — and men — in the non-member groups were denying or not fully

Downloaded by [York University Libraries] at 15:15 04 March 2015

African Journal of AIDS Research 2014, 13(1): 1–11

understanding the information given in the sessions at the HIV clinic or that social and couple related issues stopped them from joining, as indicated in Table 2. In a study conducted in Zimbabwe, Skovdal et al. (2011b) found that men’s perceptions of HIV and control over women often constituted a threat to women’s access to HIV related services. Based on the findings, many men seemed to join given that their health was compromised yet not too severely so, given that they had income in the form of grants, and that the support group offered opportunities for empowerment, employment and community outreach in addition to social support and information. Many women who joined also had grants, reported a high number of physical symptoms, a high feeling of social dysfunction, having a relatively newly born child, feelings of concern, and wanting support and information. The different characteristics and motivations found in this study could imply that the creation of support groups that take a gendered perspective, perhaps with groups for men and women separately might be fruitful. Literature on men living with HIV/AIDS in sub-Saharan African contexts has pointed to the same conclusion (Colvin and Robins 2009, Skovdal et al. 2011b, Dageid et al. 2012). Conclusion and implications Although caution must be exercised when interpreting the findings of this study they may still prove useful to HIV care and to support practitioners and policy makers. The study showed that mental and physical health and psychosocial factors and life circumstances are major challenges among PLWHA and must be addressed in support programmes. Support interventions that do not address people’s primary needs will most likely fail (Visser and Mundell 2008). Support groups should therefore, as far as possible, include income-generating activities in addition to the traditional emotional support, information and advice components. There might be a need to consider separate support groups for men and women, since their life circumstances, motivations for joining, and reasons for not joining differed in some respects. Support groups for PLWHAs in primary health care settings could offer ongoing psychosocial support over time. Two recent studies have, however, pointed towards the challenges counsellors in primary health care settings in South Africa, who are the ones who often initiate and/or run support groups based in community settings, face when trying to identify and understand mental distress in PLWHA (Haffejee et al. 2010, Mall et al. 2012). The findings of this study may thus inform primary health care providers in terms of understanding the presentation of mental distress as a complex interaction between mental health, physical health and psychosocial factors. Integrating support groups in the established chain of mental health care services could be a cost-efficient, relatively fast and far-reaching way of addressing psychosocial distress among PLWHAs in sub-Saharan Africa. Thorough information given at several points in time during ongoing HIV counselling should be encouraged to ensure that health messages are received by all those living with

9

HIV/AIDS. Otherwise, people who could benefit from being part of support groups might not join. Call for future research The main contributions of this study were to explore the different motivations and reasons for joining or not joining an HIV support group and compare these across gender. A more qualitative exploration of these motivations and reasons should be undertaken, with particular focus on gendered differences. Ideally, a prospective study in a primary health care setting should be conducted. This study did not explore the forms and levels of support, apart from the support group, already present (or missing) among the PLWHA. It is therefore plausible that some people who decided not to join the support group already had sufficient levels of support from other sources, and thus did not find support group participation necessary. Further research should be undertaken to confirm the results and trends presented in this study. Another useful direction for further research would be to assess the outcomes of a support group intervention that take a gendered approach. This could take the form of longitudinal studies of support group interventions including a range of activities, followed by an evaluation of what worked, why, and for whom. A controlled study of the content, processes and outcomes of support groups for women and men respectively as well as together could provide in-depth knowledge on how to create optimal support systems for PLWHA. The author — Wenche Dageid is a clinical psychologist and a post-doctoral researcher and lecturer at the Department of Psychology, University of Oslo, Norway. Her PhD involved creating a support initiative for and with HIV-positive people in Limpopo province, South Africa, focusing on psychosocial aspects of HIV/ AIDS and participatory approaches to care and support. Her research interests include psychosocial aspects of HIV/AIDS, qualitative and participatory methods, and broad issues related to health, social and community psychology. Acknowledgements — This work was made possible by financial support from the Research Council of Norway (RCN) and the Norwegian Programme for Development, Research and Education (NUFU), and by the invaluable contributions from the participants and research assistant, hospital and clinic staff and managers.

References Adewuya A, Afolabi M, Ola B, Ogundele O, Ajibare A, Oladipo B. (2007) Psychiatric disorders among the HIV-positive population in Nigeria: a control study. Journal of Psychosomatic Research 63, pp. 203–206. Brandt R. 2009. The mental health of people living with HIV/AIDS in Africa: a systematic review. African Journal of AIDS Research 8: 123–133. Braun V, Clarke V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77–101. Breuer E, Myer L, Struthers H, Joska JA. 2011. HIV/AIDS and mental health research in sub-Saharan Africa: a systematic review. African Journal of AIDS Research 10: 101–122.

Downloaded by [York University Libraries] at 15:15 04 March 2015

10

Castro KG, Ward JW, Slutsker L, Buehler JW, Jaffe HW, Berkelman RL, Curran JW. 1993. 1993. Revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. Clinical Infectious Diseases 17: 802–810. Colvin C, Robins S. 2009. Positive men in hard, neoliberal times: engendering health citizenship in South Africa. In: Boesten J, Poku N (eds), Gender and HIV/AIDS: critical perspectives from the developing world. Farnham: Ashgate Publishing Limited. Dageid W, Duckert F. 2007. The process of evaluating a capacitybuilding support initiative for HIV-positive South Africans. Evaluation and Program Planning 30: 381–391. Dageid W, Govender K, Gordon SF. 2012. Masculinity and HIV disclosure among heterosexual South African men: implications for HIV/AIDS intervention. Culture, Health & Sexuality 14: 925–940. Darko D, McCutchan J, Kripke D, Gillin J, Golshan S. 1992. Fatigue, sleep disturbance, disability, and indices of progression of HIV infection. American Journal of Psychiatry 149: 514–520. Freeman M, Nkomo N, Kafaar Z, Kelly K. 2007. Factors associated with prevalence of mental disorder in people living with HIV/AIDS in South Africa. AIDS Care 19: 1207–1209. Freeman M, Nkomo N, Kafaar Z, Kelly K. 2008. Mental disorder in people living with HIV/AIDS in South Africa. South African Journal of Psychology 38: 489–500. Furukawa TA, Goldberg DP, Rabe-Hesketh S, Ustun TB. 2001. Stratum-specific likelihood ratios of two versions of the General Health Questionnaire. Psychological Medicine 31: 519–529. Goldberg DP, Gater R, Sartorius N, Ustun TB, Piccinelli M, Gureje O, Rutter C. 1997. The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine 27: 191–197. Goldberg DP, Hillier VF. 1979. A scaled version of the General Health Questionnaire. Psychology and Medicine 9: 139–145. Gorman JM, Kertzner R, Cooper T, Goetz RR, Lagomasino L, Novacenko H, Williams JBW, Stern Y, Mayeux R, Erhardt AA. 1991. Glucocortoid level and neuropsychiatric symptoms in homosexual men with HIV infection. American Journal of Psychiatry 148: 41–45. Grønlie AA, Nesje K, Dageid W. 2011. Improving the responseability of people living with HIV/AIDS: Individual and group factors. In: Dageid W, Sliep Y, Akintola O, Duckert F (eds), Response-ability in the era of AIDS. Building social capital in community care and support. Bloemfontein: AFRICAN SUN MeDIA. Haffejee S, Groeneveld I, Fine D, Patel R, Bowman B. 2010. An assessment of counselling and support services for people living with HIV in Gauteng, South Africa: findings of a baseline study. African Journal of AIDS Research 9: 367–372. Heyer AS, Mabuza LH, Couper ID, Ogunbanjo GA. 2010. Understanding participation in a hospital-based HIV support group in Limpopo province, South Africa. South African Family Practice 52: 234–239. Jarrett NC, Bellamy CD, Adeyemi SA. 2007. Men’s health help-seeking and implications for practice. American Journal of Health Studies 22: 88–95. Kaharuza F, Bunnell R, Moss S, Purcell D, Bikaako-Kajura W, Wamai N, Downing R, Solberg P, Countinho A, Mermin J. 2006. Depression and CD4 cell count among persons with HIV infection in Uganda. AIDS 10: S105–S111. Kako PM, Stevens PE, Karani AK. 2011. Where will this illness take me? Reactions to HIV diagnosis from women living with HIV in Kenya. Health Care for Women International 32: 278–299. Krabbendam AA, Kuijper B, Wolffers IN, Drew R. 1998. Impact of counselling on HIV-infected women in Zimbabwe. AIDS Care 10: S25–S37.

Dageid

Liamputtong P, Haritavorn N, Kiatying-Angsulee N. 2009. HIV and AIDS, stigma and AIDS support groups: Perspectives from women living with HIV and AIDS in central Thailand. Social Science & Medicine 69: 862–868. Lindsey E. 2003. HIV-infected women and their families: Psychosocial support and related issues. A literature review. Occasional Paper 7. Geneva: Department of Reproductive Health and Research, World Health Organization. Mabunda G. 2004. HIV knowledge and practices among rural South Africans. Journal of Nursing Scholarship 36: 300–304. Magongo B, Magwaza S, Mathanbo V, Makhanya N. 2002. National report on the assessment of the public sector’s Voluntary Counselling and Testing programme. Durban, South Africa: Health Systems Trust. Mall S, Sorsdahl K, Swartz L, Joska J. 2012. “I understand just a little...” perspectives of HIV/AIDS service providers in South Africa of providing mental health care for people living with HIV/ AIDS. AIDS Care 24: 319–323. Marcus KS, Kerns RD, Rosenfeld B, Breitbart W. 2000. HIV/ AIDS-related pain as a chronic pain condition: implications of a biopsychosocial model for comprehensive assessment and effective management. Pain Medicine 1: 260–273. Mfecane S. 2012. Narratives of HIV disclosure and masculinity in a South African village. Culture, Health & Sexuality 14: S109–S121. Morrell R (ed.). 2001. Changing men in Southern Africa. London: Zed Books. Mundell JP, Visser MJ, Makin JD, Kershaw TS, Forsyth BWC, Jeffery B, Sikkema KJ. 2011. The impact of structured support groups for pregnant South African women recently diagnosed HIV positive. Women & Health 51: 546–565. Myer L, Smit J, Le Roux L, Parker S, Stein D, Seedat S. 2008. Common mental disorders among HIV-infected individuals in South Africa: prevalence, predictors, and validation of brief psychiatric rating scales. AIDS Patient Care and STDs 22: 147–158. Ndu AC, Arinze-Onyia SU, Aguwa EN, Obi IE. 2011. Prevalence of depression and role of support groups in its management: a study of adult HIV/AIDS patients attending HIV/AIDS Clinic in a tertiary health facility in South-eastern Nigeria. Journal of Public Health and Epidemiology 3: 182–186. Patton LL. 2001. Ability of HIV/AIDS patients to self-diagnose oral opportunistic infections. Community Dentistry and Oral Epidemiology 29: 23–29. Prince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, Rahman A. 2007. No health without mental health. The Lancet 370: 859–877. Ratele K. 2008. Analysing males in Africa: Certain useful elements in considering ruling masculinities. African and Asian Studies 7: 515–536. Reece M, Shacham E, Monahan P, Yebei V, Ong’or WO, Omollo O, Ojwang C. 2007. Psychological distress symptoms of individuals seeking HIV-related psychosocial support in western Kenya. AIDS Care 19: 1194–1200. Richter LM, Van Rooyen H, Solomon V, Griesel D, Durrheim K. 2001. Putting HIV counselling in South Africa in its place. Society in Transition 32: 148–154. Shacham E, Reece M, Ong’or WO, Omollo O, Monahan PO, Ojwang C. 2008. Characteristics of Psychosocial Support Seeking During HIV-Related Treatment in Western Kenya. AIDS Patient Care and STDs 22: 595–601. Segopolo MT, Selemogwe MM, Plattner IE, Ketlogetswe N, Feinstein A. 2009. A screening instrument for psychological distress in Botswana: validation of the Setswana version of the 28-item General Health Questionnaire. International Journal of Social Psychiatry 55: 149–156.

Downloaded by [York University Libraries] at 15:15 04 March 2015

African Journal of AIDS Research 2014, 13(1): 1–11

Simbayi L, Kalichman S, Strebel A, Cloete A, Henda N, Mqeketo A. 2007. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Social Science and Medicine 64: 1823–1831. Skeen S, Lund C, Kleintjes S, Flisher A, the MhaPP Research Programme Consortium. 2010. Meeting the millennium development goals in sub-Saharan Africa: What about mental health? International Review of Psychiatry 22: 624–631. Skovdal M, Campbell C, Madanhire C, Mupambireyi Z, Nyamukapa C, Gregson S. 2011a. Masculinity as a barrier to men’s use of HIV services in Zimbabwe. Globalization and Health 7: e13. Skovdal M, Campbell C, Nyamukapa C, Gregson S. 2011b. When masculinity interferes with women’s treatment of HIV infection: a qualitative study about adherence to antiretroviral therapy in Zimbabwe. Journal of the International AIDS Society 14: e29. Snow RC, Madalane M, Poulson M. 2010. Are men testing? Sex differentials in HIV testing in Mpumalanga Province, South Africa. AIDS Care 22: 1060–1065. Sternhell PS, Corr MJ. 2002. Psychiatric morbidity and adherence to antiretroviral medication in patients with HIV/AIDS. Australian and New Zealand Journal of Psychiatry 36: 528–533.

11

UNAIDS (Joint United Nations Programme on HIV/AIDS). 2010. Global report on the AIDS epidemic 2010. Geneva: UNAIDS. Uys L, Cameron S (eds). 2003. Home-based HIV/AIDS care. Cape Town: Oxford University Press. Visser MJ, Mundell JP. 2008. Establishing support groups for HIV-infected women: Using experiences to develop guiding principles or project implementation. Journal of Social Aspects of HIV/AIDS 5: 65–73. Voss JG, Sukati NA, Seboni NM, Makoae LN, Moleko M, Human S, Molosiwa K, Holzemer WL. 2007. Symptom burden of fatigue in men and women living with HIV/AIDS in Southern Africa. Journal of the Association of Nurses in AIDS Care 18: 22–31. WHO (World Health Organization). 2005. Mental health atlas. Geneva: WHO. Williams SL, Williams DR, Stein DJ, Seedat S, Jackson PB, Moomal H. 2007. Multiple traumatic events and psychological distress: The South Africa stress and health study. Journal of Traumatic Stress 20: 845–855. Wu AW, Dave NB, Diener-West M, Sorensen S, Huang I-C, Revicki DA. 2004. Measuring validity of self-reported symptoms among people with HIV. AIDS Care 16: 876–881.