Co-Designing Person- and Family-Centered Care for Older Adults Living With HIV: Protocol for a Community-Based Participatory Study.

BACKGROUND

Advances in antiretroviral therapy have transformed HIV into a chronic condition, leading to a growing population of adults aged 50 years and older living with HIV in Canada and globally. These individuals experience higher rates of multimorbidity, frailty, cognitive changes, and polypharmacy than their HIV-negative peers, and many rely on caregivers for emotional and practical support. Caregiving often occurs within chosen families of partners, friends, and community members, yet these caregivers remain largely unrecognized in policies that prioritize bio-legal family structures. Existing person- and family-centered care (PFCC) models in HIV focus mainly on pediatric and adolescent populations, leaving a critical gap in guidance for older adults and their diverse caregivers.

OBJECTIVE

This study aims to co-design Canada's first equity-informed person- and family-centered care model tailored to older adults living with HIV and their biological, bio-legal, and chosen family caregivers. The objectives are to (1) examine experiences of accessing and providing caregiving support, including gendered and intersectional differences; (2) identify key components of a PFCC model to improve access and care experiences; and (3) develop a context-sensitive implementation strategy to support uptake across care settings.

METHODS

This multiphase study uses an equity-informed Experience-Based Co-Design methodology guided by the UK Design Council's Double Diamond framework. An advisory committee of knowledge users, clinicians, and older adults living with HIV will provide ongoing input. Phase 1 involves approximately 45 semistructured interviews with older adults living with HIV, caregivers, and health care professionals, analyzed using reflexive thematic analysis. Phase 2 includes 2 co-design workshops with about 45 participants to collaboratively develop model components. Phase 3 includes 3 to 4 focus groups (approximately 30 participants) guided by the Consolidated Framework for Implementation Research to refine an implementation strategy. Equity will be operationalized using the Culturally-Competent Research Criteria for Methodological Areas and monitored using PROGRESS-Plus (place of residence, race/ethnicity, occupation, gender, religion, education, socioeconomic status, social capital, plus additional factors) indicators to support intersectional analysis.

RESULTS

The study was funded on July 17, 2025. Data collection for phase 1 is scheduled to begin in January 2027, with subsequent co-design workshops (phase 2) planned for fall 2027 and evaluation activities (phase 3) anticipated in winter-spring 2028. Completion of data analysis is expected by mid-2028, with dissemination of findings anticipated later in 2028.

CONCLUSIONS

This study will generate a rigorously developed, equity-informed PFCC model grounded in lived experience. Findings will inform policy, program planning, and service delivery to better support older adults living with HIV and their diverse caregivers while offering a replicable framework for co-designing inclusive care models in other chronic or stigmatized conditions.