Experiences and self-care needs of adolescents with epilepsy (AWE) in transition from pediatric to adult hospital care: a systematic review of qualitative evidence

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Background: Epilepsy, the third most common brain condition worldwide, affects over 70 million people. Epilepsy is also the most common neurological condition in adolescence, with a prevalence of five in 1,000 children and an incidence of approximately five to seven cases per 10,000 children from birth to 15 years of age. There is a lack of research into AWE’s experiences and self-care needs in the transition from child to adult care. The transition to adult services often results in loss of follow-up for AWE and poor patient and parent satisfaction. Further, it is often associated with deterioration in the health of AWE. This knowledge is required to improve our understanding and provide a foundation for improving clinical practice.
The objective was to synthesize evidence of AWE experiences and self-care needs in the transition from pediatric to adult hospital care.
Material and methods: We used the Joanna Briggs Institute methodology for systematic reviews of qualitative evidence. We considered all types of qualitative studies of any design or methodology and text and opinion sources that included AWE (age 12-22 years) experiences, views, expectations, and self-care needs in the transition from pediatric to adult hospital care.
A comprehensive search and screening process was followed, and the four databases searched included PubMed (incl Medline), CINAHL (EBSCO), Scopus (incl Embase), and PsycINFO (Ovid). The search strategy aimed to locate both published and gray literature, including dissertations and theses using qualitative methodology. Databases were searched from their inception to the present date.
All identified citations were collected and uploaded into Covidence, where two independent reviewers screened titles and abstracts for assessment against the inclusion criteria for the review.
Results: The literature search identified 3016 citations; 20 studies met eligibility criteria. Two independent reviewers used the standard JBI critical appraisal checklist for qualitative research to critically appraise the eligible studies' methodological quality. Two independent reviewers extracted qualitative data from papers included in the review using a standardized data extraction tool adapted from JBI SUMARI. Using the meta-aggregation approach, findings were retrieved verbatim, along with illustrations, and a level of credibility was assigned.
Conclusions: Meta-synthesis in progress will be presented at the conference along with categories of experiences and self-care needs that will be subjected to synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
Original languageEnglish
Publication date2023
Publication statusPublished - 2023
EventThe 14th EANN Quadrennial Congress of the European Association of Neuroscience Nurses: “Looking to the future and celebrating advancements in Neuroscience Nursing.” - Hilton Reykjavík Nordica | Iceland, Reykjavik, Iceland
Duration: 25. May 202327. May 2023


ConferenceThe 14th EANN Quadrennial Congress of the European Association of Neuroscience Nurses
LocationHilton Reykjavík Nordica | Iceland
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