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 Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dis- sertations and Theses.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

Toward Nurses’ Transformative Agency in Transitional Care for Older Adults: A Change-Laboratory Intervention

Mobilization of nurses’ agency across healthcare sectors is needed to counter challenges associated with older adults’ transitions between hospital and primary care. Based on Cultural Historical Activity theory and the Change Laboratory method, we developed a learning intervention with 16 nurses. The aim was to foster the nurses’ transformative agency to improve care. Video-recording of nine learning sessions were transcribed and analyzed. Results demonstrated that shared transformative agency exhibited as an emergent phenomenon crossing sectoral boundaries as a prerequisite for change in transitional care. The nurses progressed from acting as individuals criticizing the current conditions to collectively forming a vision around a transitional care model. This was nurtured through the nurses’ negotiations which included a recognition of sharing similar challenges deriving from the healthcare organization and related financial restrictions, and conflicting healthcare and nursing ideals across healthcare sectors. The evolution of transformative agency was grounded in a professional nursing identity

Using Sandelowski and Barroso's metasynthesis method in advancing qualitative evidence

The purpose of this article was to iteratively account for and discuss the handling of methodological challenges in two qualitative research syntheses concerning patients’ experiences of hospital transition. We applied Sandelowski and Barroso’s guidelines for synthesizing qualitative research, and to our knowledge, this is the first time researchers discuss their methodological steps. In the process, we identified a need for prolonged discussions to determine mutual understandings of the methodology. We discussed how to identify the appropriate qualitative research literature and how to best conduct exhaustive literature searches on our target phenomena. Another finding concerned our status as third-order interpreters of participants’ experiences and what this meant for synthesizing the primary findings. Finally, we discussed whether our studies could be classified as metasummaries or metasyntheses. Although we have some concerns regarding the applicability of the methodology, we conclude that following Sandelowski and Barroso’s guidelines contributed to valid syntheses of our studies. </jats:p