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

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.