Transfer As a Component of the Transition of Adolescents with Sickle Cell Disease to Adult Care: Adolescent, Adult and Parent Perspectives

UNCG Author/Contributor (non-UNCG co-authors, if there are any, appear on document)
Joseph Telfair, Professor (Creator)
The University of North Carolina at Greensboro (UNCG )
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Abstract: Purpose: There are no empirical studies which assess the transfer needs/concerns of adolescents and young adults with sickle cell disease (SCD) and their primary caretakers. The overall purpose of this research was to determine the issues, concerns, and expectations of adolescents, young adults and primary caretakers with regard to transfer to adult care. Methods: Participants were recruited from clinics and programs participating in the Duke/UNC Comprehensive Sickle Cell Program. Using a cross-sectional survey design, young adults (n = 60), adolescents (n = 36) and primary caretakers (n = 25) were administered the Sickle Cell Transfer Questionnaire (SCTQ). Results: Adolescents and young adults with SCD were primarily concerned about how they would pay for medical care and how they would be treated by adult providers. Caretakers were concerned about their teens leaving pediatric care and assuming responsibility for medical care. All three groups reported mixed emotions about leaving pediatric care. There was consensus among the respondents regarding the need for transfer programs and what they should offer. Bivariate analysis revealed that age, education level, and disease severity were statistically significant co-factors influencing the feelings, concerns and opinions of the study participants. Conclusion: Future longitudinal experimental research is needed to corroborate the results of this study and to assess the effectiveness of transition-related intervention programs for adolescents with SCD and their families.

Additional Information

Journal of Adolescent Health. 15(11): 558-565
Language: English
Date: 1994
Sickle cell disease, Transition, Transfer Adolescents, Young adults, Primary caretakers, Health care

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