Using Community-Based Participatory Research to Develop Care Recommendations for People Aging With HIV

BACKGROUND AND OBJECTIVES: Over 50% of New Yorkers living with human immunodeficiency virus (HIV) are 50 years old or older, and the emotional and physical consequences of being a long-term survivor are significant. This study aimed to identify the practical needs of long-term survivors and older people with HIV (consumers) in New York State and develop recommendations addressing those needs. RESEARCH DESIGN AND METHODS: The HIV + Aging/LTS/Perinatally Diagnosed Subcommittee of the Consumer Advisory and Quality Advisory committees in the New York State AIDS Institute used community-based participatory research (CBPR) methods to design a statewide survey about the care needs of consumers in New York State. This survey, open to consumers, clinicians, and supportive services providers, was launched in June 2021 using Qualtrics. Participants provided demographic data and chose the 3 most important barriers and recommendations from each of 10 categories of issues affecting health care and supportive services. Consumers provided information about their HIV diagnosis and other health conditions. Responses were characterized using basic descriptive statistics. RESULTS: Participants included 124 consumers from 26 counties, 20 clinicians, and 24 supportive service providers. Among consumers, 67% were cisgender men, 27% were African American, and 65% were both long-term survivors and older people with HIV. On average consumers had been diagnosed with HIV for 27 years. Participants were concerned with clinical care coordination, housing needs, cultural representation in mental health services, and financial support of consumers. DISCUSSION AND IMPLICATIONS: CBPR is an effective approach to developing consumer-generated recommendations to improve HIV care for long-term survivors and older people with HIV. Town hall formats informed survey design, enabled broad coverage of topics, and ensured that focus remained on priorities most important to consumers. The first quality initiative arising from the study was a routine screening of long-term survivors of HIV to identify functional decline and enhance referral pathways and care linkages.