UCSF

Purpose

The purpose of this dissertation grounded theory study is to gain understanding of the experiences and mental health of Ugandan grandparents 50 years of age and older who provide primary care for grandchildren affected by HIV/AIDS.

Background

Despite the overall global decrease in AIDS-related deaths and HIV infections, sub-Saharan Africa remains the region most affected by the epidemic. In 2015, 23.5 million people were living with HIV in sub-Saharan Africa while an average of 800,000 people have died of AIDS-related causes. Uganda was reported to have had an estimated 28,000 adult deaths due to AIDS by 2015 that rendered approximately 660,000 children orphans to date (UNAIDS, 2016). Despite broad acknowledgement that in this HIV/AIDS era older adult caregivers are the backbone and safety net of the African family, very little research has explored the impact of this grandparental burden on the physical and mental health of this vulnerable population.

Methods

Using a grounded theory approach, semi-structured qualitative interviews were conducted with 32 grandparents recruited from the general population impacted by the HIV/AIDS epidemic. The one-on-one interviews were audio-recorded, transcribed, and analyzed using open, axial, and selective coding as well as reflexive and analytic memoing congruent with the methodology.

Findings

Study participant narratives described the caregiving burden as being financial, emotional, and physical although a few rewards were reported. In addition, the current study highlighted other experiences such as the described dimensions of loss and characterized the psychosocial distress related the caregiving role and other socio-economic stressors and the associated coping strategies. The mental health implications and explanatory model of this experiences were also described.

Implications

The study’s findings provide an extensive insight into the experiences of Ugandan grandparent–caregivers in the context of the HIV/AIDS epidemic. These insights can potentially inform clinicians, researchers, and policy makers who may seek explanatory models upon which to create care plans and design family-centered and community-based interventions such as childcare and respite care for these older grandparent–caregivers.