Identifying and Responding to the Strengths, Preferences, and Needs of Caregivers of Older Adults in Africa Using Self-Reported Assessment Systems

Abstract

Background Recent demographic shifts have led to rapid population aging in Africa. Yet, formal health systems have limited structural capacity to provide high-quality care to older persons. Culturally rooted familial expectations, combined with health system limitations, have driven a growing reliance on informal caregivers to meet the evolving needs of Africa’s aging population. Tasks better suited for formal health care providers now increasingly fall on caregivers who receive minimal training and preparation for these roles. However, the needs of caregivers themselves often remain unrecognized in health and community care settings.

Methods This dissertation explored how the strengths, preferences, and needs of informal caregivers could be more formally identified, assessed, and supported within existing health systems in Africa. Specifically, this work aimed to generate evidence to promote caregiver well-being and capacity, while informing the integration of routine caregiver assessment into clinical practice. Obtaining a deeper understanding of the dynamics that shape informal care was essential to achieve this goal. This was addressed through five interconnected studies outlined below.

Results Study 1 included a scoping review that identified and summarized theoretical and conceptual models of informal caregiving. Through conceptual synthesis of 99 identified models, seven themes emerged that represent the common dimensions of the informal caregiving experience. Themes informed the development of a summary model of informal caregiving dynamics. The Dynamic Model of Informal Caregiving contains seven domains, including background characteristics, the caregiving situation, caregiving environment, caregiving relationship, available and perceived resources, situational appraisal, and responses and outcomes. These domains contribute to a comprehensive understanding of the complex variables that shape informal care. The Dynamic Model forms the conceptual foundation of this dissertation, informing the design, analytical procedures, and interpretation of the studies that follow. Study 2 explored the prevalence and predictors of distress for caregivers of older adults in Africa using a quantitative approach. While the caregiving experience encompasses both rewards and challenges, caregiver distress remains a crucial outcome to investigate given its implications for care quality, sustainability, and dyadic health and well-being. Logistic regression and generalized estimating equation models were built using data captured from older adults assessed with the interRAI Check-Up Self-Report geriatric assessment. Variable selection was informed by the Dynamic Model. Results demonstrated a substantial burden of distress (31.5%) among caregivers supporting older persons across diverse clinical sites in 14 African countries (n=8,080), with the highest levels reported in samples from Sierra Leone (75.2%) and Malawi (68.1%). Adjusted final models revealed several statistically significant variables associated with increased odds of caregiver distress, including care recipient loneliness, hours of support received, economic trade-offs, impairment in activities of daily living, cognitive impairment, and health instability. These findings highlight several actionable priorities for intervention and the potential of more systematic approaches to characterizing caregiver needs. Building on the insights from studies 1 and 2, studies 3-5 comprise an implementation and appraisal of the interRAI Self-reported Carer Needs (SCaN) assessment in central Uganda. Through investigating African health system readiness, feasibility, and acceptability of the SCaN, these studies demonstrate the real-world potential of collecting comprehensive caregiver data to inform clinical practice and policy. Using a qualitative approach, study 3 investigated the current practices used by health care workers in Uganda to identify, assess, and respond to informal caregivers and their needs. This study then characterized health care worker perspectives on the potential use of the interRAI SCaN to support these processes. Results indicate that health care workers are generally positioned to identify informal caregivers. However, structured approaches for assessing caregiver needs and responding systematically are currently lacking. The SCaN was found to offer a systematic mechanism for transitioning from caregiver identification to structured support. Study 4 involved an implementation of the SCaN assessment with informal caregivers of older adults in central Uganda. A comprehensive health and service needs profile was developed, psychometric properties were examined to assess measurement performance, and assessment feasibility was evaluated using operational measures. Preliminary content validity was examined through mapping individual assessment items to the Dynamic Model. In total, 124 caregivers completed the SCaN assessment. Analysis revealed good internal consistency, convergent validity, and promising operational performance. Findings suggest that it is feasible for health care workers to collect high-quality information about the health, well-being, and support needs of caregivers using self-reported assessment instruments in this setting. Following assessment implementation, study 5 examined the acceptability of the SCaN for use with caregivers of older adults using a mixed-methods approach. Guided by the Theoretical Framework of Acceptability, this study explored perspectives of caregivers as intervention receivers and health care workers as intervention deliverers to determine SCaN acceptability using surveys and focus groups. Participants reflected critically on the assessment and offered insights into how it could be used to better understand and address caregiver needs. Results demonstrate that the SCaN is generally acceptable across seven framework dimensions, while outlining critical considerations for implementation relevant to community-based care settings in Africa.

Contribution This dissertation fills critical knowledge gaps regarding informal caregiving dynamics for older persons in Africa, offering a theoretically grounded approach to caregiver integration within existing health systems. Collectively, the five included studies provide a robust package of evidence, beginning with conceptual foundations and the characterization of caregiver challenges and ending with a real-world implementation and appraisal of a caregiver needs assessment. Altogether, this dissertation provides a novel, scalable, and practical method for strengthening caregiver identification, assessment, and support across African health systems.

Funding Study 3, 4, and 5 were funded through a Global Health Graduate Student Research Award from the Global Health Policy and Innovation (GHPI) Research Centre at the University of Waterloo.

Ethical Considerations Study 2 received ethics clearance through a University of Waterloo Ethics Review Board (#44604) and from authorized ethical committees according to local regulations in each of the participating countries. Study 3, 4, and 5 received ethics clearance through a University of Waterloo Research Ethics Board (#47303), the Clarke International University-Research Ethics Committee in Uganda (#CLARKE-2025-1691), and the Uganda National Council for Science and Technology (#HS6589ES).