Using group concept mapping to co-create a research agenda with the homeless community in Rhode Island

Homelessness is indisputably a pressing social concern in the United States today, with deleterious impacts on both individual and population health. However, policy development often excludes the voices of those directly affected, leading to strategies that fail to meet their needs. This study was grounded in the principle that people experiencing a phenomenon have the clearest view of its causes and solutions. We used a community-based participatory research design, group concept mapping, to partner with the homeless community in Rhode Island to understand what is needed to effectively address this crisis. People with current or recent experiences of homelessness were eligible to participate, and recruitment occurred primarily by word-of-mouth between partners (participants) and their peers. The research involved 43 partners in step one, where they responded to an open-ended prompt, “When we understand ______ better, the homelessness crisis will be better,” to generate 25 statements. In step two, 50 partners sorted these statements based on similarity and rated them on a scale of 1 (not at all important) to 4 (very important). The data were analyzed using multidimensional scaling and hierarchical cluster analysis to visualize the interconnections and group the statements. The research team reached consensus on a five-cluster solution. The five core clusters were: immediate and basic needs (average rating 3.66), longer-term needs (3.48), interactions with authority (3.45), core factors of well-being (3.11), and the social experience of homelessness (3.11). The single highest-rated topic was housing availability, affordability, and stability (3.93). Crucially, partners conceptually grouped mental health and substance use care within the interactions with authority cluster, suggesting that behavioral health services are often mandated rather than voluntarily sought in the community. This study confirms that community-based participatory research is feasible and effective in developing a research and action roadmap with people experiencing unsheltered homelessness. The results suggest the necessity of adapting healthcare and social service systems to be more responsive to the needs of the homeless community, including by emphasizing the importance of voluntary treatment models. The process centered partners’ perspectives, validating their lived expertise and inviting their continued collaboration in future research.