Uncovering a Family Caregiving Model: Insights From Research to Benefit HIV-Infected Patients, Their Caregivers, and Health Professionals

The purpose of this study was to understand family caregiving practices for HIV-infected patients, including problems and needs based on experiences of primary family caregivers and persons living with HIV (PLWH) in Rayong province, Thailand. The participants were 48 PLWH and 48 primary family caregivers. Data collection consisted of individual in-depth interviews of PLWH and family caregivers, plus focus groups with the primary family caregivers and observations. Content analysis was performed to analyze the qualitative data. Results indicated that there was a transformation in family caregivers from the time of initial diagnosis to their offering of loving, caregiving practices. The most unexpected result was that primary family caregivers evolved their own model for caregiving practices; the most concerning result was their fear of stigmatization. Caregiving practices included seeking treatment and help, providing support and care, keeping the closure of diagnosis, coping with stress, requesting the truth about diagnosis, and maintaining family values and dignity.

Key words: AIDS, assessment, family caregiver, Family Caregiving Model, HIV, interventions