Mette S Ludvigsen1, Elisabeth O C Hall2, Thomas Westergren3, Hanne Aagaard4, Lisbeth Uhrenfeldt5, Liv Fegran6. 1. Department of Clinical Medicine - Randers Regional Hospital, Aarhus University, Østervangsvej 70,2, 8930 Randers NØ, Denmark; Faculty of Nursing and Health Sciences, Nord University, Universitetsalléen 11, 8049 Bodø, Norway; Danish Centre of Clinical Guidelines and Danish Centre of Systematic Reviews, A Joanna Briggs Institute Centre of Excellence, Aalborg University, Aalborg, Denmark. Electronic address: metspl@clin.au.dk. 2. Department of Public Health, Aarhus University, Bartholins Alle 2, 8000 Aarhus C, Denmark; Faculty of Health Sciences and Nursing, University of Faroe Islands, Torshavn, Faroe Islands. Electronic address: eh@ph.au.dk. 3. Department of Health and Nursing Science, University of Agder, Campus Kristians and, Universitetsveien 25, 4630 Kristiansand, Norway. Electronic address: Thomas.westergren@uia.no. 4. Department of Public Health, Aarhus University, Bartholins Alle 2, 8000 Aarhus C, Denmark; Lovisenberg Diaconal University College, Lovisenberggata 15b, 0456 Oslo, Norway. Electronic address: aagaard@clin.au.dk. 5. Faculty of Nursing and Health Sciences, Nord University, Universitetsalléen 11, 8049 Bodø, Norway; Danish Centre of Clinical Guidelines and Danish Centre of Systematic Reviews, A Joanna Briggs Institute Centre of Excellence, Aalborg University, Aalborg, Denmark. Electronic address: Lisbeth.uhrenfeldt@nord.no. 6. Department of Health and Nursing Science, University of Agder, Campus Kristians and, Universitetsveien 25, 4630 Kristiansand, Norway. Electronic address: liv.fegran@uia.no.
Abstract
BACKGROUND: Family members of young people (13-24 years) with long-term conditions tend to experience 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 Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dissertations and Theses.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 metasynthesis. Articles published between 1999 and March 2019 were systematically searched for. FINDINGS: Twenty-three reports from seven Western countries representing 454 parents including significant 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 multiple 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' experiences and distress in healthcare planning to promote safe and predicable transfers of their young people. 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. Tweetable abstract: Parents experienced being cross-pressured when their young people with long-term conditions were transferred from paediatric to adult care.
BACKGROUND: Family members of young people (13-24 years) with long-term conditions tend to experience 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 Dissertations 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 metasynthesis. Articles published between 1999 and March 2019 were systematically searched for. FINDINGS: Twenty-three reports from seven Western countries representing 454 parents including significant 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 multiple 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' experiences and distress in healthcare planning to promote safe and predicable transfers of their young people. 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. Tweetable abstract: Parents experienced being cross-pressured when their young people with long-term conditions were transferred from paediatric to adult care.
Authors: E Aleshchenko; E Swart; C Spix; M Voigt; P Trocchi; T Langer; G Calaminus; K Baust; J Glogner; P Ihle; J Küpper-Nybelen; C Lüpkes; T Kloppe; D Horenkamp-Sonntag; I Meier; U Marschall; P Dröge; M Klein; A Weiss; C Apfelbacher Journal: BMC Health Serv Res Date: 2022-09-20 Impact factor: 2.908