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

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 Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dis- sertations and Theses.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.publishedVersio

Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis

Author's version of an article in the journal: International Journal of Nursing Studies. Also available from the publisher at: http://dx.doi.org/10.1016/j.ijnurstu.2013.02.001Objectives: The objective of this study was to synthesize qualitative studies of how adolescents and young adults with chronic diseases experience the transition from paediatric to adult hospital care. Design: The review is designed as a qualitative metasynthesis and is following Sandelowski and Barroso's guidelines for synthesizing qualitative research. Data sources: Literature searches were conducted in the databases PubMed, Ovid, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ISI Web of Science, and Nordic and German databases covering the period from 1999 to November 2010. In addition, forward citation snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Review methods: Of the 1143 records screened, 18 studies were included. Inclusion criteria were qualitative studies in English, German or Nordic languages on adolescents' and young adults' transition experiences when transferring from paediatric to adult care. There was no age limit, provided the focus was on the actual transfer process and participants had a chronic somatic disease. The studies were appraised as suitable for inclusion using a published appraisal tool. Data were analyzed into metasummaries and a metasynthesis according to established guidelines for synthesis of qualitative research. Results: Four themes illustrating experiences of loss of familiar surroundings and relationships combined with insecurity and a feeling of being unprepared for what was ahead were identified: facing changes in significant relationships, moving from a familiar to an unknown ward culture, being prepared for transfer and achieving responsibility. Conclusions: Young adults' transition experiences seem to be comparable across diagnoses. Feelings of not belonging and of being redundant during the transfer process are striking. Health care professionals' appreciation of young adults' need to be acknowledged and valued as competent collaborators in their own transfer is crucial, and may protect them from additional health problems during a vulnerable phase. Further research including participants across various cultures and health care systems is needed

Exploring the development of a cultural care framework for European caring science

The aim of this paper is to discuss the development of a cultural care framework that seeks to inform and embrace the philosophical ideals of caring science. Following a review of the literature that identified a lack of evidence of an explicit relationship between caring science and cultural care, a number of well-established transcultural care frameworks were reviewed. Our purpose was to select one that would resonate with underpinning philosophical values of caring science and that drew on criteria generated by the European Academy of Caring Science members. A modified framework based on the work of Giger and Davidhizar was developed as it embraced many of the values such as humanism that are core to caring science practice. The proposed caring science framework integrates determinants of cultural lifeworld-led care and seeks to provide clear directions for humanizing the care of individuals. The framework is offered to open up debate and act as a platform for further academic enquiry