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J Adv Nurs. 2018 Dec;74(12):2871-2881. doi: 10.1111/jan.13811. Epub 2018 Sep 4.

Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services.

Author information

1
School of Social Sciences, Bangor University, Bangor, Wales, UK.
2
Betsi Cadwaladr University Health Board, Research and Development Office Ysbyty Gwynedd, Bangor, UK.
3
Division of Nursing, Midwifery & Social Work, School of Health Sciences, University of Manchester, Manchester, UK.
4
Wales Council for Voluntary Action, Cardiff, Wales, UK.

Abstract

AIMS:

The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services.

BACKGROUND:

Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory.

DESIGN:

Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).

METHODS:

Qualitative framework analysis completed 2017.

FINDINGS:

Six conflicting realities were identified: Planning to live and planning to die with different illness trajectories that misaligned with adult service models; being treated as an adult and the oldest "patient" in children's services compared with being treated as a child and the youngest "patient" in adult services; being a "child" in a child's body in children's services compared with being a "child" in an adult's body in adult services for those with learning impairments; being treated by experienced children's professionals within specialist children's services compared with being treated by relatively inexperienced professionals within generalist adult services; being relatively one of many with the condition in children's services to being one of very few with the condition in adult services; meeting the same eligibility criteria in children's services but not adult services.

CONCLUSION:

Inequity and skills deficits can be addressed through targeted interventions. Expanding age-specific transition services, use of peer-to-peer social media, and greater joint facilitation of social support groups between health services and not-for-profit organizations may help mitigate age dilution and social isolation in adult services.

KEYWORDS:

adult, child; life-limiting; life-threatening; nursing; palliative care; secondary analysis; transition to adult care qualitative

PMID:
30047155
DOI:
10.1111/jan.13811

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