Towards youth-centred communication in chronic disease care: A scoping review

BackgroundRising numbers of youth are living with chronic conditions that require sustained engagement with healthcare during a period of increasing expectations for autonomy. Communication is central to supporting their health literacy, participation, and transition to independent self-management. This scoping review synthesises evidence on how adolescents and young adults with chronic conditions experience communication with healthcare providers and what they need and value in these interactions.MethodsScopus, PubMed, and PsycINFO were searched for eligible peer-reviewed studies that reported on communication experiences of young people aged≥11 with chronic illness. Data on communication-related findings were extracted and synthesised using reflexive thematic analysis.ResultsFifty-one publications met inclusion criteria. Across approximately 3073 young people, key communication needs centred on trust, autonomy, health literacy, and psychosocial support. Trust was strengthened by continuity of care, clear introductions, showing genuine interest, empathy, and respect. Youth valued being listened to, taken seriously, and involved in decisions; however, many reported limited opportunities to participate meaningfully, especially those from historically marginalised groups. The literature suggested that parental involvement could both support and inhibit engagement, underscoring the need for gradual, collaborative transitions. Significant gaps were identified in condition-specific and system-level health literacy. Psychosocial concerns strongly shaped communication needs. Young people wanted proactive discussions about sexuality, fertility, alcohol, and drug use. Observational research was scarce.ConclusionTrusting, person-centred relationships and proactive, developmentally appropriate communication are essential to support youth engagement and autonomy in clinical care. More observational research is needed to understand how best to support youth in healthcare interactions.