Adolescent and Caregiver preparation for legal changes at age 18

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.

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.

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.

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.