Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

Patient engagement strategies are used in community-based participatory research. A successful strategy requires that patients, researchers, and health-care providers collaborate to create meaningful outcomes. Hard-to-reach patient populations such as those living with complex physical or psychosocial conditions, who are geographically dispersed, or who are disadvantaged financially or socially, experience judgment, stigmatization, and marginalization within society and in the research process. Therefore, strategies are needed to better engage hard-to-reach populations in research. One strategy to engage this population is group concept mapping (GCM). This article illustrates how GCM was utilized to engage a hard-to-reach population of young adults (YAs) with life-limiting conditions (LLC), parents of YAs with LLC, and health and health and community experts. Study participants were involved in generating, analyzing, and interpreting data. Five attributes of GCM are outlined, and suggestions are made for how other researchers could use GCM to engage their hard-to-reach patient populations.