Addressing the Needs and Identifying Supports for Parents of Chronically Ill Adolescents and Young Adults in their Shared Transition from Pediatric to Adult Care: A Scoping Review Protocol
Authors: Maini Pranshu , Tersigni Claudia , Micsinszki Samantha , Cairns Sarah , Murray Kate , Frost Karen 
Published: January 2025

Introduction

The transition from pediatric to adult healthcare marks a pivotal period for chronically ill adolescents, as they transition from a highly supportive and family-oriented environment to an adult-, and a more individual-oriented healthcare system that places a greater emphasis on personal responsibility and independence. Parents, given their firsthand experience managing their child’s healthcare, play a central role in ensuring a smooth and successful transition, yet their perspectives on the barriers and facilitators of this complex process remain vastly underexplored. This scoping review aims to assess and provide comprehensive insights into parents’ perceptions of the successes and challenges during their adolescents’ transition from pediatric to adult healthcare.

Methods & analysis

This scoping review is led by patient partners and will be guided by the Peters et al. and the Joanna Briggs Institute (JBI) guidelines for scoping reviews. The preliminary search strategy will be developed and calibrated in Ovid MEDLINE and will be subsequently replicated in CINAHL, PsychInfo, Embase, Web of Science, and Sociological Abstracts from inception through December 18th, 2024, including all types of studies. Grey literature sources recommended by patient partners and clinical and qualitative research experts will also be included. Two reviewers will independently perform the title and abstract review of all studies against the pre-defined inclusion and exclusion criteria, followed by the full-text review of included studies. The reference list of all included studies will also be screened to maximize the retrieval of relevant sources. Data will be extracted and analyzed quantitatively and qualitatively, with the study procedural and reporting format following PRISMA-ScR guidelines.

Ethics & dissemination

This scoping review, through the broad and systematic mapping of existing literature, aims to provide a foundation for developing targeted support systems, strategies and interventions to address the unique needs and barriers faced by parents and caregivers of chronically-ill adolescents during this critical transition to adult care.

Strengths and limitations of this study

The inclusion of scholarly, peer-reviewed and grey literature across 6 specialized and cross-disciplinary databases will help ensure a comprehensive coverage of relevant literature, minimizing publication bias, enhancing data reproducibility and methodological rigor.

The involvement of patient partners in driving this review from conceptualization and planning to data synthesis and reporting of results will help ensure that the research question and interpretations of findings are grounded in patient priorities, ultimately enhancing the review’s relevance and applicability.

Findings from this scoping review will be extended to inform subsequent phases of a national multicentre study that aims to enhance parental preparedness of parents and caregivers of chronically-ill adolescents to better support their transition from pediatric to adult care.

In employing a practical and focused strategy, the inclusion of grey literature solely recommended by patient partners (i.e. patients and caregivers/family members) and clinical and research experts (i.e. pediatric and adult gastroenterologists, nurse practitioners, and clinical and qualitative researchers) may introduce selection bias by excluding lesser-known yet potentially impactful sources.

The inclusion of literature only published in English may limit generalizability of findings to non-English-speaking populations and unique cultural contexts and healthcare settings.