Parents' experiences with health care transition of their adolescents and young adults with medically complex conditions: A scoping review

Abstract

Background: Health care transition (HCT) has become increasingly important as adolescents and young adults (AYAs) with complex medical conditions now live well into adulthood but little attention has been given to parents of AYAs preparing for HCT.

Objective: This scoping review aimed to identify and synthesize information on parental facilitators and barriers to health care transition readiness.

Eligibility criteria: English-language, peer-reviewed original studies focused on the parents' experience of HCT were included. Studies were excluded if AYAs were not anticipated to be independent or if AYAs had only mental health disorders.

Charting methods: Parent-reported facilitators and barriers were identified in each study and then categorized to identify common themes.

Results: Themes related to parental facilitators included evidence of coordination between pediatric and adult levels of care, healthcare provider guidance for HCT, and parental awareness and acceptance of natural seasons of life. Themes related to parental barriers included relationship loss, loss of parental role, lack of knowledge and/or skills, and concerns related to the health care system in general.

Conclusion: Common facilitators and barriers were found across studies, regardless of medical diagnosis. Relationships and role change figure prominently in parents' perceptions of the HCT experience and their readiness for their AYA children to transition. These findings suggest potential areas for future research inquiry as well as potential nursing interventions designed to aid parents through HCT.

Keywords: Adolescents; Chronic disease; Parents; Transition.