Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

1-1-2025

Journal

Health Care Transitions

DOI

10.1016/j.hctj.2025.100106

PMID

40574913

PMCID

PMC12197979

PubMedCentral® Posted Date

6-12-2025

PubMedCentral® Full Text Version

Post-print

Abstract

Background: Most adolescents with special healthcare needs (ASHCN) will assume legal responsibility for making decisions about their medical treatment at age 18. Simultaneously, parents or other legal representatives (Caregivers) will lose ASHCN medical record access. This study examined ASHCN and Caregiver knowledge of, satisfaction with, and suggestions for improvement in preparing for these changes.

Methods: Eighty-three dyads (18-year-old ASHCN and Caregivers) completed an assessment to evaluate their knowledge about changes in responsibility for decision making with a focus on consent, satisfaction with the preparation received, and recommendations for improved preparation. Descriptive statistics and mean comparisons were used. Responses to open-ended questions were coded by an interdisciplinary team.

Results: ASHCN and Caregivers did not significantly differ (70 % vs. 66 %, p > 0.05) in their overall knowledge of legal changes that occurred at age 18. Less than half of ASHCN and Caregivers reported being very satisfied with the preparation they received before turning 18. ASHCN would have wanted to practice skills, know more information, and be more actively engaged in their healthcare. Caregivers desired more information/communication from the healthcare team, opportunities for ASHCN to practice skills, and recognition that not every 18-year-old is ready to assume self-management. A subset of ASHCN and Caregivers felt well prepared.

Conclusions: Many ASHCN and Caregivers are not adequately prepared for the legal changes in responsibility for healthcare decision-making and access to information that occur at age 18. Interventions to promote a clear understanding of these changes while providing opportunities for ASHCN to practice self-management skills before age 18 are needed.

Keywords

Self-management, Health literacy, Legal changes at adulthood, Healthcare responsibilities, Adolescent, Young adult, Transition preparation

Published Open-Access

yes

Download

Share

COinS
 
 

To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.