A phenomenological inquiry of women living with HIV caring for family members living with HIV in India: pathways through authoritative knowledge and self-efficacy towards resilience

In this qualitative, phenomenological study, I explore the lived experiences of caregiving women living with HIV (N=33) and how they make meaning of being primary caregivers while ailing themselves. The study is set in north-central India where the socio-cultural context ties women’s caregiving roles to their identity as “good women”. The following major influences and iterative processes shape women’s experiences; Meaning-making of caregiving, Search for authoritative knowledge, (AK), Exercise of self-efficacy, Building of resilience and Social construction of informal caregiving and caregivers in interaction with health workers. Lipsky’s street level bureaucratic principles apply to health worker’s (N =15) conditions of work. Findings indicate the following: 1) Women make meaning of their caregiving role in primarily positive terms such as wifely duty and being a courageous wife. However, women break away from their care recipients when they make harsh demands of caregiving on them and when women face emotional, verbal, and physical abuse as caregivers.2) Despite the severe burdens of caregiving work and loss of personal health in the process of caring, women search for authoritative knowledge from physicians, community, and family members; they ultimately resort to their own sense of knowing and often find AK within themselves versus an external source. In the process, women use self-efficacious thoughts, behaviors, and actions to identify what to do and how to do it. 3) Over a period of time, women build resilience through greater self-reliance and supportive relationships with peers and health workers. This study has implications for the development of programs for HIV-positive female caregivers and gender-sensitive programs and policies for women living with HIV in India and abroad.Ph.D.Includes bibliographical reference