Dora Clayton-Jones1,2, Nadine Matthie3, Marsha Treadwell4, Joshua J Field2, Amy Mager2, Rachel Sawdy1, Safiya George Dalmida5, Cynthia Leonard6, Kathryn L Koch2, Kristin Haglund1. 1. Marquette University College of Nursing, Milwaukee, WI, USA. 2. Medical College of Wisconsin, Milwaukee, WI, USA. 3. Emory University, Nell Hodgson Woodruff School of Nursing, Atlanta, GA, USA. 4. UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA. 5. Christine E. Lynn College of Nursing, Florida Atlantic University, Boca Raton, FL, USA. 6. Froedtert Hospital Sickle Cell Disease Clinic, Milwaukee, WI, USA.
Abstract
Introduction: Due to advances in disease management, mortality rates in children with sickle cell disease (SCD) have decreased. However, mortality rates for young adults (YA) increased, and understanding of social and psychological factors is critical. The aim of this study was to explore factors associated with health care transition experiences for YA with SCD. Method: This was a qualitative descriptive study. A 45-minute semistructured interview was conducted with 13 YA (M = 21.5 years, SD = 1.73). Results: Results suggest that social and psychological factors and self-management experiences influence health care transition. Eight themes emerged: "need for accessible support"; "early assistance with goal setting"; "incongruence among expectations, experiences, and preparation"; "spiritual distress"; "stigma"; "need for collaboration"; "appreciation for caring providers"; and "feeling isolated." Discussion: Consideration of cultural contexts will guide nurses in supporting health care transition. Designing culturally relevant interventions that address unique needs for YA living with SCD is warranted.
Introduction: Due to advances in disease management, mortality rates in children with sickle cell disease (SCD) have decreased. However, mortality rates for young adults (YA) increased, and understanding of social and psychological factors is critical. The aim of this study was to explore factors associated with health care transition experiences for YA with SCD. Method: This was a qualitative descriptive study. A 45-minute semistructured interview was conducted with 13 YA (M = 21.5 years, SD = 1.73). Results: Results suggest that social and psychological factors and self-management experiences influence health care transition. Eight themes emerged: "need for accessible support"; "early assistance with goal setting"; "incongruence among expectations, experiences, and preparation"; "spiritual distress"; "stigma"; "need for collaboration"; "appreciation for caring providers"; and "feeling isolated." Discussion: Consideration of cultural contexts will guide nurses in supporting health care transition. Designing culturally relevant interventions that address unique needs for YA living with SCD is warranted.
Entities:
Keywords:
adolescents; clinical areas; oncology/hematology; qualitative; research methods