Research Article| Volume 29, ISSUE 2, P158-167, March 2014

Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role

Published:November 04, 2013DOI:
      Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary.

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        • Ballas S.K.
        • Dampier C.
        Outcome of transitioning pediatric patients with sickle cell disease to adult programs.
        Blood. 2004; 104: 3743
      1. Betz, C. L. (2013). Health care transition for adolescents with special healthcare needs: Where is nursing? Nursing Outlook, 61, 258–265. [pii].

      2. Betz, C. L., Lobo, M. L., Nehring, W. M., & Bui, K. (2013). Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition. Nursing Outlook, 61, 311–336. [pii].

        • Blinder M.A.
        • Vekeman F.
        • Sasane M.
        • Trahey A.
        • Paley C.
        • Duh M.S.
        Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs.
        Pediatric Blood & Cancer. 2013;
        • Bronfenbrenner U.
        Ecology of human development.
        Harvard University Press, Cambridge, MA1979
        • Bronfenbrenner U.
        Making human beings human: Bioecological perspectives on human development.
        Sage, Thousand Oaks, CA2005
      3. Brousseau, D. C., Owens, P. L., Mosso, A. L., Panepinto, J. A., & Steiner, C. A. (2010). Acute care utilization and rehospitalizations for sickle cell disease. Journal of the American Medical Association, 303, 1288–1294. [pii]10.1001/jama.2010.378

      4. Cooley, W. C., & Sagerman, P. J. (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200. [pii].

        • Creswell J.W.
        Qualitative inquiry and research design: Choosing among five approaches.
        3rd edn ed. SAGE Publications, Inc., Thousand Oaks, CA, USA2012
        • Crosby L.E.
        • Barach I.
        • McGrady M.E.
        • Kalinyak K.A.
        • Eastin A.R.
        • Mitchell M.J.
        Integrating interactive Web-based technology to assess adherence and clinical outcomes in pediatric sickle cell disease.
        Anemia. 2012; 2012: 492428
        • Gold J.I.
        • Treadwell M.
        • Weissman L.
        • Vichinsky E.
        The mediating effects of family functioning on psychosocial outcomes in healthy siblings of children with sickle cell disease.
        Pediatric Blood & Cancer. 2011; 57: 1055-1061
      5. Graff, J. C., Hankins, J., Graves, R. J., Robitaille, K. Y., Roberts, R., Cejda, K.,. Porter, J. S. (2012). Exploring family communication about sickle cell disease in adolescence. Journal of Pediatric Oncology Nursing, 29, 323–336. [pii].

        • Graff J.C.
        • Hankins J.S.
        • Hardy B.T.
        • Hall H.R.
        • Roberts R.J.
        • Neely-Barnes S.L.
        Exploring parent–sibling communication in families of children with sickle cell disease.
        Issues in Comprehensive Pediatric Nursing. 2010; 33: 101-123
        • Green J.
        • Thorogood N.
        Qualitative methods for health research (2nd).
        edn ed. SAGE Publications, Inc., Thousand Oaks, CA, USA2009
      6. Hankins, J. S., Osarogiagbon, R., Adams-Graves, P., McHugh, L., Steele, V., Smeltzer, M. P., & Anderson, S. M. (2012). A transition pilot program for adolescents with sickle cell disease. Journal of Pediatric Health Care. [pii]10.1016/j.pedhc.2012.06.004

      7. Hassell, K. L. (2010). Population estimates of sickle cell disease in the u.S. American Journal of Preventive Medicine, 38(4 Suppl), S512-S521. [pii]10.1016/j.amepre.2009.12.022.

        • Hauser E.S.
        • Dorn L.
        Transitioning adolescents with sickle cell disease to adult-centered care.
        Pediatric Nursing. 1999; 25: 479-488
        • Hemker B.G.
        • Brousseau D.C.
        • Yan K.
        • Hoffmann R.G.
        • Panepinto J.A.
        When children with sickle-cell disease become adults: Lack of outpatient care leads to increased use of the emergency department.
        American Journal of Hematology. 2011; 86: 863-865
      8. Huang, J. S., Gottschalk, M., Pian, M., Dillon, L., Barajas, D., & Bartholomew, L. K. (2011). Transition to adult care: Systematic assessment of adolescents with chronic illnesses and their medical teams. Journal of Pediatrics, 159, 994–998 e992. [pii].

        • Kingsnorth S.
        • Gall C.
        • Beayni S.
        • Rigby P.
        Parents as transition experts? Qualitative findings from a pilot parent-led peer support group.
        Child: Care, Health and Development. 2011; 37: 833-840
        • Krueger R.A.
        • Casey M.A.
        Focus groups: A practical guide for applied research.
        3rd edn ed. SAGE Publications, Inc., Thousand Oaks, CA, USA2000
      9. Lee, L., Askew, R., Walker, J., Stephen, J., & Robertson-Artwork, A. (2012). Adults with sickle cell disease: An interdisciplinary approach to home care and self-care management with a case study. Home Healthcare Nurse, 30, 172–183; [quiz 183–175]. [pii].

        • Lemly D.C.
        • Weitzman E.R.
        • O'Hare K.
        Advancing healthcare transitions in the medical home: Tools for providers, families and adolescents with special healthcare needs.
        Current Opinion in Pediatrics. 2013;
        • McPherson M.
        • Thaniel L.
        • Minniti C.P.
        Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness.
        Pediatric Blood & Cancer. 2009; 52: 838-841
        • Morgan D.L.
        • Krueger J.A.
        When to use focus groups and why.
        in: Morgan D.L. Successful focus groups: Advancing the state of the art. Sage, Newbury Park, CA1993: 3-19
        • Noll R.B.
        • Yosua L.A.
        • Vannatta K.
        • Kalinyak K.
        • Bukowski W.M.
        • Davies W.H.
        Social competence of siblings of children with sickle cell anemia.
        Journal of Pediatric Psychology. 1995; 20: 165-172
        • Patton M.Q.
        Qualitiative research and evaluation methods.
        Sage Publications, Thousand Oaks2002
      10. Peter, N. G., Forke, C. M., Ginsburg, K. R., & Schwarz, D. F. (2009). Transition from pediatric to adult care: Internists' perspectives. Pediatrics, 123, 417–423. [pii].

        • Plumridge G.
        • Metcalfe A.
        • Coad J.
        • Gill P.
        Parents' communication with siblings of children affected by an inherited genetic condition.
        Journal of Genetic Counseling. 2011; 20: 374-383
      11. Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood, 115, 3447–3452. [pii]10.1182/blood-2009-07-233700.

      12. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115, 112–120. [pii]10.1542/peds.2004-1321.

        • Saldana J.
        The coding manual for qualitative researchers.
        SAGE Publications, Inc., Thousand Oaks, CA, USA2009
      13. Sparud-Lundin, C., Ohrn, I., & Danielson, E. (2010). Redefining relationships and identity in young adults with type 1 diabetes. Journal of Advanced Nursing, 66, 128–138. [pii].

        • Stewart D.W.
        • Shamdasani P.N.
        • Rook D.W.
        Focus groups: Theory and practice.
        2nd ed. Sage, Thousand Oaks2007
        • Telfair J.
        • Alexander L.R.
        • Loosier P.S.
        • Alleman-Velez P.L.
        • Simmons J.
        Providers' perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease.
        Journal of Health Care for the Poor and Underserved. 2004; 15: 443-461
        • Telfair J.
        • Ehiri J.E.
        • Loosier P.S.
        • Baskin M.L.
        Transition to adult care for adolescents with sickle cell disease: Results of a national survey.
        International Journal of Adolescent Medicine and Health. 2004; 16: 47-64
        • Telfair J.
        • Myers J.
        • Drezner S.
        Transfer as a component of the transition of adolescents with sickle cell disease to adult care: Adolescent, adult, and parent perspectives.
        Journal of Adolescent Health. 1994; 15: 558-565
        • Tong A.
        • Wong G.
        • Hodson E.
        • Walker R.G.
        • Tjaden L.
        • Craig J.C.
        Adolescent views on transition in diabetes and nephrology.
        European Journal of Pediatrics. 2013; 172: 293-304
        • Treadwell M.
        • Telfair J.
        • Gibson R.W.
        • Johnson S.
        • Osunkwo I.
        Transition from pediatric to adult care in sickle cell disease: Establishing evidence-based practice and directions for research.
        American Journal of Hematology. 2011; 86: 116-120
      14. Tuchman, L. K., Slap, G. B., & Britto, M. T. (2008). Transition to adult care: Experiences and expectations of adolescents with a chronic illness. Child: Care, Health and Development, 34, 557–563. [pii]10.1111/j.1365-2214.2008.00844.x.

        • van Staa A.L.
        • Jedeloo S.
        • van Meeteren J.
        • Latour J.M.
        Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers.
        Child: Care, Health and Development. 2011; 37: 821-832
      15. Vollmer, W. M., Feldstein, A., Smith, D. H., Dubanoski, J. P., Waterbury, A., Schneider, J. L., Rand, C. (2011). Use of health information technology to improve medication adherence. American Journal of Managed Care, 17(12 Spec No.), SP79–87. [pii].

      16. Wang, C. J., Kavanagh, P. L., Little, A. A., Holliman, J. B., & Sprinz, P. G. (2011). Quality-of-care indicators for children with sickle cell disease. Pediatrics, 128, 484–493. [pii].

      17. Wojciechowski, E. A., Hurtig, A., & Dorn, L. (2002). A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services. Journal of Pediatric Nursing, 17, 18–27. [pii].