Being cross pressured - parents’ experiences of the transfer from paediatric to adult care services for their young people with long term conditions: a systematic review and qualitative research synthesis

Abstract

Background: Family members of young people (13–24 years) with long-term conditions tend to experi- ence multiple challenges when their children transfer from paediatric to adult care, as do the patients themselves.

Objectives: To identify, interpret and theoretically conceptualise the meaning of parents’ experiences of the transfer from paediatric to adult care of their young people with long-term conditions.

Design: A qualitative research synthesis. Data sources: We obtained articles from Medline, CINAHL, PsycINFO, EMBASE, Scopus, and Web of Science. Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dis- sertations and Theses.

Review methods: Based on a previously published protocol, we followed the guidelines from the Joanna Briggs Institute. Sandelowski and Barroso’s qualitative research synthesis approach guided the metasyn- thesis. Articles published between 1999 and March 2019 were systematically searched for.

Findings: Twenty-three reports from seven Western countries representing 454 parents including signif- icant others such as aunts and grandparents of 462 young people with various diagnoses contributed to the review. ‘Being cross-pressured’ was the metasynthesis found to reflect parents’ experiences of the transfer from paediatric to adult care of their young people with long-term conditions. The metasynthesis comprised four themes: ‘Fluctuating between parental roles’, ‘Navigating contrasting healthcare contexts’, ‘Making decisions in the face of inner conflict’, and ‘Trusting their child’s self-management ability’.

Conclusions: Our metasynthesis finding of parents’ experiences of being cross-pressured provides a new way of thinking about the study phenomena which is supported by transitions theory holding that mul- tiple transitions can take place simultaneously involving myriads of concurrent and conflicting demands. The cross pressure may overwhelm parents. The clinical implications are to recognise parents’ experi- ences and distress in healthcare planning to promote safe and predicable transfers of their young peo- ple. Provision of healthcare to parents during transfer needs to be tailored to a collaborative decision- making process between parents, their young people, and involved practitioners across paediatric and adult healthcare services.