In Their Own Words: Dating and Romantic Relationships in Prader-Willi Syndrome

Abstract

Dating and romantic relationships are a central aspect of adult life, yet little is known about how adults with Prader-Willi syndrome (PWS) understand and experience romantic relationships. Most research on PWS, a rare genetic neurodevelopmental disorder, has emphasized medical, behavioral, and cognitive features, leaving significant gaps in understanding participants’ social and emotional worlds. The present study addresses this gap by amplifying the voices of adults with PWS through qualitative interviews that explore how they conceptualize, pursue, and sustain romantic relationships. Semi-structured interviews were conducted with four adults with PWS (aged 19-31) and analyzed using an applied thematic approach. Four themes emerged: 1) conceptions of romantic relationships, 2) dating preferences, 3) proximity to romantic partners, and 4) parental expectations about dating. Across themes, participants demonstrated nuanced understandings of romantic relationships. At the same time, their experiences were shaped by ongoing tensions between autonomy and protection, particularly in relation to caregiver involvement. These findings challenge deficit-based assumptions about the relational capacities of adults with PWS and highlight a gap between individuals’ desire for meaningful relationships and their access to opportunities to pursue them. Findings will inform caregivers, clinicians, and support organizations seeking to promote meaningful, agency-respecting relationships in adults with PWS.