Economic Empowerment and Health Promotion of Uganda Grandmother-caregivers.

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.

INNOVATION The BAJJAJJA intervention is the first (that the investigators know of) to explore the effectiveness of an IGA and health coaching in promoting household income and health among Ugandan GMCs. The proposed study is also the first (that the investigators know of) in Uganda to utilize a community-engaged approach to emphasize the meaningful involvement of community partners to inform intervention development for GMCs. Engaging community partners in all study phases is critical to allow for a community-informed development, validation, and evaluation of a culturally relevant, sustainable intervention. The BAJJAJJA intervention aligns with the Uganda National Council for Science and Technology's priorities to develop regulations that will soon require all studies conducted with human subjects to involve a level of community engagement.51 Results of the proposed study have the potential to (1) advance gerontological and grandparent-caregiving research by testing interventions that address SDoH affecting an aging population, (2) improve economic and health behavior outcomes, and (3) advance the PI's program of research by informing a subsequent R01 efficacy trial.

APPROACH Study Objective: Following the NIH Stage Model,66 the proposed study aims to (1) use a community-engaged approach to engage a diverse group of community members in the refinement and adaptation of the BAJJAJJA intervention (AIM 1); (2) test the intervention's feasibility, acceptability, and preliminary efficacy (AIM 2); and (3) explore the barriers and facilitators to the long-term maintenance of the intervention (e.g., physical activity level and frequency) and sustainability of the IGA activities (e.g., accessing of external supports such as community resources) at 6 months post-intervention (AIM 3).

THE BAJJAJJA INTERVENTION:

There is growing evidence that multi-component economic empowerment and health promoting interventions, like the BAJJAJJA intervention, can be feasibly scaled to national and regional levels.41-45 The IGA COMPONENT is intended to promote economic empowerment by improving household income based on available resources. Informed by CAB members,49 I adapted the USAID IGA guidelines53 to develop an IGA manual. Working closely with Dr. Namisango, an economist and K01 Advisor, a budget will be established to provide direct funds for the IGA project. The intervention will consist of a series of 1-hour sessions with 3 separate GMC participant groups (8 GMCs per group). Two IGA experts will lead these sessions, weekly for the first two months and later monthly for the remaining 10 months of the 12-month intervention period. In the first phase, the experts will assist the group in determining governance, communication, roles, responsibilities, and how they plan to steward their funds. The second phase will involve education on IGA topics, such as market assessment, cost-benefit analysis, production and marketing, bookkeeping, and market niche/materials, to enhance knowledge about management, entrepreneurship, sustainability planning, and awareness of community resources to support the IGA post- intervention.49 As informed by the preliminary work, the 3 GMC groups may identify others (e.g., older grandchildren or community members) to assist in IGA tasks, such as feeding livestock. A formal caretaker may also be hired to assist the GMCs with heavier tasks due to physical and mobility challenges. Identified helpers will be invited to join select sessions to increase their knowledge of animal husbandry. The final phase will be guided by elements of implementation fidelity.68,81

The HEALTH COACHING COMPONENT will be informed by the Chronic Disease Self-Management Education (CDSME) framework.54 This community-based, person-centered care model will be used to empower GMCs to manage their health through goal-setting, problem-solving, and chronic disease self-monitoring. I (PI) will leverage the community networks that I developed during the preliminary work to (1) recruit interventionists(two nurses) via established networks and or newspaper advertisements and (2) ensure their adequate training and adherence to the intervention manuals and procedures. I will lead a 2-day training workshop with the two interventionists on the content, delivery, and format of the CDSME health-topic modules (e.g., pain management, nutrition, physical activity, medication use, sanitation, and emotions) and motivational interviewing (MI) techniques. Interventionists will then (1) conduct participant assessments and monitor health indicators at three time points (baseline, 12 months, and post-intervention \[18 months\]), and (2) facilitate the group health coaching sessions (each 1.5 hours long), weekly for the first two months and later monthly for the next ten months using the developed coaching materials and MI. Published randomized controlled trials suggest that using MI with older adults can lead to modifications to health-related behaviors and works well in group settings; further, MI promotes empowerment and engagement in managing and improving health outcomes.55-59 Interventionists will employ the four-phase group MI model: (1) engaging the group (e.g., developing working relationships, norms within the group, and guidelines); (2) exploring participants' perspectives (e.g., on their values, health and health goals, barriers and issues, and ambivalence); (3) broadening perspectives (e.g., generating potential options for change, identifying strategies to overcome barriers); and (4) moving into action (e.g., setting goals, planning and implementing changes that participants believe will improve their lives).59

Specific Aim 1: To refine and adapt the BAJJAJJA intervention components through a collaborative and iterative feedback process with a diverse community group of 18 members.

Sample and Setting: AIM 1 will focus on refining the BAJJAJJA intervention, including study measures and training materials.49 In this aim, 18 participants will be recruited from rural areas around Masaka, Luwero, or Lugazi, regions historically most affected by HIV/AIDS and sociopolitical factors. Participants will include elected local council (LC) leaders (n = 3), healthcare professionals (

• Feasibility & Acceptability: Demographic and Clinical Data Form [Time frame: Baseline, 12-months, and 6- months post-intervention (18- months)]
• Sustainability & Maintenance: Semi-structured & structured questionnaires [Time frame: Baseline, 12-months, and 6- months post-intervention (18- months)]
• Fidelity Monitoring [Time frame: Baseline, 12-months, and 6- months post-intervention (18- months)]