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

Abstract

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 parent's 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.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

We gratefully acknowledge the generous support of Pfizer and Amgen through their unrestricted grants for education and research. Their contributions were vital to the success of this study, and we appreciate their commitment to advancing education and research. The sponsors had no involvement in the study design, conduct, or reporting of findings.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data generated for this scoping review protocol are publicly available online and have been appropriately cited within the manuscript.

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