Transition to adult care: Experiences and expectations of adolescents with a chronic illness

Transition to adult care: Experiences and expectations of adolescents with a chronic illness

Tuchman L; Slap G; Britto M

Journal Of Adolescent Health

2005

Adolescent Transitions

Purpose: We hypothesized that adults with CHD are likely to be better adapted to their disease and as likely to have met their adolescent developmental milestones, as adults with acquired heart disease (AHD) of the same organ. Methods: A convenience sample of 25 adults with CHD were surveyed in hospital based outpatient clinics and at CHD conferences in 2003, using a 45 item instrument, the Patient Adjustment to Illness Self Report (PAIS-SR: Derogatis, 1978,1983) It is a standardized, reliable and valid measure, which reflects adolescent milestones. Norms have been established for adults with AHD, but not for adults with CHD. Results: Results were compared with already established norms for acquired adult cardiac patients. CHD patients ranged in age from 22 to 53. In terms of individual scores based on percentiles, the CHD patient’s scores are above the normative midpoint (50th percentile) for Heath Care Orientation and Family Relations. Overall, however, the CHD patients are less well adjusted at the 25th percentile compared to AHD. CHD patients fall substantially below the midpoint on Vocational, Social, and Domestic Environment, as well as Sexual Relations and Psychological Distress, suggesting that the developmental challenges of adolescence have not been met. Variability exists with the standard deviation greater than the mean, and a range from the 1st percentile to above the 99th percentile. Conclusions: The psychosocial needs of CHD patients are not being met and may be masked by their good Extended Family Relations and Health Care Orientation. Individuals who are long-term survivors may find that the previous expectation regarding the terminal nature of the disorder left them unprepared for the transition into adolescence and adulthood. In addition, scarring from surgery in childhood may compromise body image and the associated risk of isolation, because of fear of rejection by potential sexual partners. Normal developmental tasks, such as finding a mate, may also be avoided. Research is needed into how these needs may be met. PII: S1054-

2005

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