Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: a systematic review protocol.

Abstract

The objective of this systematic review is to identify and synthesize the best available evidence on parents' expectations and experiences when young people with congenital heart disease transfer from pediatric to adult care. Transition programs are internationally acknowledged as a means to prevent lapses of care, loss of follow-up and provide young people with knowledge needed to be independent and take charge of their own health. Optimal transition from pediatric to adult care involves collaborating with parents, who also face several challenges during this transfer, including uncertainty and anxiety. This review will consider qualitative studies that include parents' views, expectations and experiences of the transition process and their role when young people aged 10 to 24 years with congenital heart disease are transferred from pediatric to adult care. Parents will include mothers, fathers and other primary caregivers (e.g. step-parents). This review will consider studies conducted in high-income countries and focus on qualitative data. A three-step search strategy will be utilized. An initial limited search of PubMed, CINAHL and PsycINFO (EBSCO) will be undertaken. Studies in English, German, Swedish, Norwegian and Danish will be considered for this review. Databases will be searched from their inception to the present date. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Selected studies will be critically appraised by three independent reviewers for methodological quality. Findings will be pooled using meta-aggregation, and a ConQual Summary of Findings will be presented.