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Authors

  1. Rehm, Roberta S. PhD, RN, FAAN
  2. Fuentes-Afflick, Elena MD, MPH
  3. Fisher, Lucille T. PhD, RN
  4. Chesla, Catherine A. DNSc, RN, FAAN

Abstract

Families undertake extensive planning during transition to adulthood so youth with concomitant special health care needs and developmental disabilities will have a long-term high quality of life. Findings from an interpretive field study involving 64 youth and their parents indicated that the meaning of adulthood was functioning as independently as possible with appropriate supports. Parental priorities included protecting health, assuring safety and security in multiple realms, finding meaningful activities after high school, and establishing supportive social relationships. These priorities demonstrated the need to broaden usual health care transition goals that focus on finding adult providers and optimizing self-management.