Development and Testing of BAJJAJJA: An Intervention to Promote Economic Empowerment and Health of Grandmothers Who Provide Primary Care for Grandchildren in Uganda

SIGNIFICANCE Caring for children is complex in the best of circumstances. Grandparents take on primary caregiving responsibility when parents are unavailable or unable to rear their children. In sub-Saharan Africa, prevailing reasons for grandparent-caregiving include parental illness/death due to AIDS and other infectious diseases and socioeconomic factors such as chronic poverty.1-8 Although sub-Saharan Africa has seen reductions in new HIV infections compared to other regions, it remains the most affected worldwide. Of the estimated 13.4 million orphans created by the HIV/AIDS epidemic, more than 80% live in sub-Saharan Africa,9 and grandmothers often step forward to care for orphaned children.1-8,10 Older grandmothers (bajjajja), some of whom are living with HIV, bear the additional responsibility of caring for children who may be infected with HIV and/or have other special needs. Dr. Matovu's research will focus on Uganda, a country with a long history of HIV cases,11 and older grandmother-caregivers (GMCs) who often become the primary caregivers for their grandchildren. Without the safety net provided by GMCs, Uganda could face a public health crisis.

Grandparent-Caregiving Phenomenon:

The plight of GMCs has been documented by exploratory studies in Uganda as it relates to social determinants of health (SDoH) such as wars and the early years of the HIV epidemic.1-9 Many of these studies highlighted the challenges and few rewards of caregiving as experienced by Ugandan GMCs. However, these studies did not explore GMCs' perception of their role, the intricate familial restructuring or decision-making involved in caring for grandchildren affected by HIV/AIDS, or the impact of caregiving on mental and physical health of these older adults. These gaps motivated me to explore the grandparent-caregiving phenomenon as experienced by older Ugandan grandparents. From a qualitative study of 32 Ugandan GMCs, the PI developed the GRAndparent-CarEgiving (GRACE) model, a substantive theory12,13 that offers a theoretical explanation of the caregiving experience and role as reported by GMCs (publication in review). The findings from this foundational research begun to fill the prior gaps in knowledge and further established an understanding of key concepts, such as symptom experience,14 loss,15 perceived rewards, stress, and coping16,17 as experienced by GMCs. Alongside corroborating positive aspects of caregiving from prior studies,8,9 the foundational research revealed overwhelming caregiver stress. Grandparents reported physical, emotional, social, and, most prevalently, financial burdens that impacted their abilities to adequately provide for themselves, their grandchildren, and other family members, such as aging spouses and parents.

The proposed intervention will target GMCs' primary support needs: financial and health-related wellbeing. A handful of descriptive caregiver studies in sub-Saharan Africa explored the impact of caregiving on younger family caregivers (~39 to 48 years of age) and reported extensive caregiver burden, poor nutritional status, and potential adverse health outcomes, such as cardiovascular disease and depression.18,19 The paucity of research in sub-Saharan Africa, particularly in Uganda, contrasts with the extensive research in North America, showing the negative impact of caregiving on the physical and mental health of GMCs.20-40 Additionally, there are a few intervention studies in Central and East African that focus on women's empowerment41,42 and AIDS orphans and their families.43-46 While highlighting the challenges experienced by the younger caregiver cohort and orphans, findings from these studies may not directly translate to the specific needs of an aging population of GMCs in Uganda. Grandmothers are particularly vulnerable to age-related poor health outcomes and chronic socioeconomic stressors that may be further exacerbated by caregiving.24, 29,32 These women are often responsible for the wellbeing of their families, especially when diseases and other SDoH negatively impact the productive and reproductive age group (15-49).17 Therefore, compromised health among GMCs can potentially affect a whole family, leading to increased adverse social, health, and economic community outcomes. The next logical step in advancing this research among GMCs is to refine and adapt an innovative and multi-component intervention, BAJJAJJA: Building A Joint Action for JaJJAs, and test its feasibility, acceptability, and preliminary efficacy. The PI proposed research will be the first known study to test a multi- component intervention geared toward the unique needs of GMCs in Uganda.

Scientific Premise and Theoretical Underpinnings: the intervention is informed by Pearlin's47 interpretation of the stress process and Lazarus and Folkman's transactional model of stress and coping.48 The PI's preliminary research enabled me to contextualize the application of these two theories to the specific stressors experienced by older GMCs in Uganda.14-17,49 It is essential that the investigators address these stressors through culturally appropriate interventions. The proposed intervention will, therefore, focus on two of the most salient stressors: financial and health challenges. The BAJJAJJA intervention is comprised of two components: (1) an income generating activity (IGA) and (2) nurse-led health coaching. These intervention components align with two of the social support typologies proposed by House:50 instrumental/tangible (earnings from the IGA) and informational (health coaching). Providing social support in these categories has potential to reduce the effects of stress and improve the financial and health outcomes of GMCs.