A technical report exploring whether caregivers of people living with HIV/AIDS receive sufficient psycho-social support : a South African descriptive study at community care project
“I find that most of the time my heart is sore, and I think a lot, and I feel I need someone to talk to, even if it’s a little kid”. This is one of the desperate voices of one of Community Care Project’s Caregivers. Community Care Project (CCP) provides support for families who are infected and affected by the HIV/AIDS epidemic. The researcher observed that many of the staff, volunteers and carers were experiencing exhaustion, depression and even burn-out as a result of continual caring for people infected by HIV/AIDS. Caring for a Person Living with HIV/AIDS (PLHA) appeared to be a major stressor in the lives of caregivers, which was believed to affect a caregiver’s mental health and his or her ability to cope, as well as a caregiver’s general wellbeing. Thus, the research question was: “Do CCP caregivers providing care to People living with HIV/AIDS, receive sufficient psycho-social support?” The degree of psycho-social support that is presently available to caregivers, as well as whether current support is sufficient for maintained coping by caregivers within the HIV/AIDS context were addressed as an integral part of the research. A phenomelogical descriptive survey study design was used to explore the research question. Forty-two Caregivers participated in this study (population size of 97 possible CCP caregivers). Self-administered questionnaires were completed and two focus groups were conducted to explore the effects that caring for a PLHA had on ones’ coping ability, and whether one had sufficient psycho-social support for maintained coping. Analysis was carried out using manual coding for qualitative data, while the quantitative data was analysed using descriptive statistics. Results showed CCP caregivers are not receiving sufficient psycho-social support. Results also showed that demographic variables such as age, sex, health of PLHA, type of caregiver, monthly income, number of HIV-related deaths, and number of PLHA’s cared for did not affect a caregivers coping ability. Results showed poor access to and use of emotional support networks. 41 % of caregivers feel they are not currently coping with the stressors of caregiving and 88 % are experiencing one or more symptoms of burnout (the most common being insomnia, with 48% of participants experiencing this symptom). The study concluded that caregiving has affected physical, mental and spiritual health of caregivers and many expressed that there had been significant decrease in their functioning as a result of their caregiving for PLHA’s.