The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

BACKGROUND AND AIM: The published literature addressing the nature of patient- and family-centred care (PFCC) among young adults (16–25 years old) living with chronic disease and their family members is diverse. The aim of this systematic review was to collect and interpretatively synthesise this literature to generate a conceptual understanding of PFCC in this age group. METHOD: From an initial pool of 10,615 papers, 51 were systematically identified as relevant to the research question and appraised using the Critical Appraisal Skills Programme tools. A total of 24 papers passed the quality appraisal and proceeded to a qualitative meta-synthesis. RESULTS: The qualitative meta-synthesis revealed three major elements of PFCC relevant to young adults living with chronic disease and their family members: (1) patients and practitioners felt able to engage with each other on an emotional and social level; (2) patients and families felt empowered to be part of the care process; and (3) patients and families experienced care as effective at addressing their individual needs. CONCLUSION: There is agreement among young adult patients and families about what constitutes PFCC in a chronic disease setting, independent of the aetiology of the pathological process. Patients and families also have strong feelings about how practitioners can achieve PFCC in practice. These findings have implications for the delivery of health services to young adults living with chronic disease and their family members.