title: Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability.
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.
authors.affiliation: School of Nursing, Family Health Care Nursing, University of California, San Francisco, CA 94143, USA. roberta.rehm@ucsf.edu
authors.forename: Roberta S
authors.initials: RS
authors.lastname: Rehm
authors.forename: Elena
authors.initials: E
authors.lastname: Fuentes-Afflick
authors.forename: Lucille T
authors.initials: LT
authors.lastname: Fisher
authors.forename: Catherine A
authors.initials: CA
authors.lastname: Chesla
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services / Q000458:organization & administration*; D000295:Adolescent Medicine / Q000458:organization & administration*; D000328:Adult; D001294:Attitude to Health; D002658:Developmental Disabilities / Q000453:epidemiology* / Q000523:psychology; D006233:Persons with Disabilities / Q000706:statistics & numerical data*; D005260:Female; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010347:Patient Care Planning; D010372:Pediatrics; D055815:Young Adult