Patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review. (15th May 2020)

• Record Type: Journal Article
• Authors: Kelly, Ayano; Niddrie, Fiona; Tunnicliffe, David J; Matus Gonzalez, Andrea; Hanson, Camilla; Jiang, Ivy; Major, Gabor; Singh-Grewal, Davinder; Tymms, Kathleen; Tong, Allison
• Is Part Of: Rheumatology. Volume 59:Number 12(2020)
• Page Start: 3737
• Page End: 3750
• Publication Date: 2020-05-15
• Subjects: transition to adult care -- transitional care -- rheumatology -- qualitative research -- systematic review; Rheumatism -- Periodicals; Rheumatology -- Periodicals; 616.723005
• DOI: 10.1093/rheumatology/keaa168
• Languages: English
• ISSNs: 1462-0324

Abstract

Abstract: Objectives: We aimed to describe patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes. Methods: We searched MEDLINE, EMBASE, PsycINFO and CINAHL to August 2019 and used thematic synthesis to analyse the findings. Results: From 26 studies involving 451 people with juvenile-onset rheumatic conditions we identified six themes: a sense of belonging (comfort in familiarity, connectedness in shared experiences, reassurance in being with others of a similar age, desire for normality and acceptance); preparedness for sudden changes (confidence through guided introductions to the adult environment, rapport from continuity of care, security in a reliable point of contact, minimizing lifestyle disruptions); abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to hand over medical information, shocked by meeting adults with visible damage and disability, vulnerability in the loss of privacy); anonymous and dismissed in adult care (deprived of human focus, sterile and uninviting environment, disregard of debilitating pain and fatigue); quest for autonomy (controlled and patronized in the paediatric environment, liberated from the authority of others, freedom to communicate openly); and tensions in parental involvement (overshadowed by parental presence, guilt of excluding parents, reluctant withdrawal of parental support). Conclusion: Young people feel dismissed, abandoned, ill-prepared and out of control during transition. However, successful transition can be supported by preparing for changes, creating a sense of belonging and negotiating parental involvement and autonomy. Incorporating patient-identified priorities into transitional services may improve satisfaction and outcomes in young people with juvenile-onset rheumatic conditions.