title: Health care transitions for adolescents with congenital heart disease: patient and family perspectives.
abstract: Advances in medical management and surgical treatment have improved the longevity and quality of life for patients with CHD. However, meeting the health care needs of this growing population has not kept pace with the advances in technology. Adolescents with CHD are caught between both childhood and adulthood and pediatric and adult cardiology. As health care providers develop strategies to meet the special health care transition needs of this group, patient and family perspectives must be understood and included in the transition plan if one is to develop meaningful interventions. Assessment and recognition of the developmental changes occurring for both adolescents and their families and the impact of chronic illness on these changes are critical if transition is to be successful. Expectations,individual biases, and negative stereotypes need to be recognized and reframed if one is to establish an empathetic, positive, and trusting relationship with patients and their families. Greater sensitivity also needs to be given to the shifting roles, responsibilities, and inherent losses that occur with transition. Nurses have a key role in guiding patients and families toward adult, independent self-care by helping them identify and use their talents and resources as they move toward achieving their goals and dreams for the future.
authors.affiliation: Division of Pediatric Cardiology, University of California, San Francisco, 521 Parnassus Avenue C350, Box 0632, San Francisco, CA 94143-0632, USA. Elizabeth.tong@ucsfmedctr.org
authors.forename: Elizabeth M
authors.initials: EM
authors.lastname: Tong
authors.forename: Susan
authors.initials: S
authors.lastname: Kools
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D003266:Continuity of Patient Care; D006330:Heart Defects, Congenital / Q000451:nursing* / Q000523:psychology / Q000628:therapy; D006803:Human Development; D006801:Humans; D010290:Parents / Q000523:psychology; D010347:Patient Care Planning; D010353:Patient Education as Topic; D014481:United States