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Adult Care Transitioning for Adolescents with Special Health Care Needs: A Pivotal Role for Family Centered Care

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Abstract

To examine the relationship between having a usual source of care, family centered care, and transition counseling for adolescents with special health care needs. Data are from 18,198 parents/guardians, of youth aged 12–17 years, who participated in the 2005–2006 National Survey of Children With Special Health Care Needs. Linear and logistic regression models were used to define relationships between parent report of identification of a usual place and provider of medical care for their child and counseling on four transition issues: transfer to adult providers, review of future health needs, maintaining health insurance in adulthood, and youth taking responsibility for care. The direct mediating effect of family centered care was evaluated. Youth having a usual source of care (vs. not) were more likely to receive counseling on future health needs (47.4 vs. 33.6%, P < 0.001) and taking responsibility for their own care (79.3 vs. 64.4%, P < 0.001). Having a high level of family centered care (vs. low) was also associated with high rates of discussing future health needs (56.3 vs. 39.6%, P < 0.001) and encouragement to take responsibility for care (91.2 vs. 70.3%, P < 0.001). Family centered care mediated 39.1% of the effect of a usual source of care on discussion of future health needs and 94.9% of the effect of a usual source of care on encouragement to take responsibility for care. Study findings support the development of health care delivery models focusing on family centered care to the same degree as other health care access issues.

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References

  1. Reiss, J., & Gibson, R. (2002). Health care transition: Destination unknown. Pediatrics, 110(6), 1307–1314.

    PubMed  Google Scholar 

  2. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112–120.

    PubMed  Google Scholar 

  3. Burke, R., Spoerri, M., Price, A., Cardosi, A., & Flanagan, P. (2008). Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clinical Pediatrics, 47(4), 347–354.

    Article  PubMed  Google Scholar 

  4. Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115, 1607–1612.

    Article  PubMed  Google Scholar 

  5. Lotstein, D., McPherson, M., Strickland, B., & Newacheck, P. (2005). Transition planning for youth with special health care needs: Results from the National Survey of Children With Special Health Care Needs. Pediatrics, 115, 1562–1568.

    Article  PubMed  Google Scholar 

  6. Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: Results from the 2005 2006 National survey of children with special health care needs. Pediatrics, 123, e145–e152.

    Article  PubMed  Google Scholar 

  7. Council on Children With Disabilities, American Academy of Pediatrics Policy Statement. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116:1238–1244.

    Google Scholar 

  8. Maternal and Child Health Bureau. Achieving and measuring success: A national agenda for children with special health care needs.. Accessed on January 6, 2009 http://mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm.

  9. Strickland, B. B., Singh, G. K., Kogan, M. D., Mann, M. Y., van Dyck, P. C., & Newacheck, P. W. (2009). Access to the Medical Home: New findings from the 2005–2006 National survey of children with special health care needs. Pediatrics, 123, e996–e1004.

    Article  PubMed  Google Scholar 

  10. Bethell, C. D., Read, D., & Brockwood, K. (2004). Using existing population-based data sets to measure the American Academy of Pediatrics Definition of Medical Home for all children and children with special health care needs. Pediatrics, 113, 1529–1537.

    PubMed  Google Scholar 

  11. American Academy of Pediatrics. The National Center of medical home initiatives for children with special needs. Accessed on October 11, 2009.http://www.medicalhomeinfo.org/.

  12. Homer, C. J., Klatka, K., Romm, D., Kuhlthau, K., Bloom, S., Newacheck, P., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122, e922–e937.

    Article  PubMed  Google Scholar 

  13. Wood, D. L., McCaskill, Q. E., Winterbauer, N., Jobli, E., Hou, T., Wludyka, P., et al. (2009). A multi-method assessment of satisfaction with services in the Medical Home by parents of children and youth with special health care needs (CYSHCN). Maternal and Child Health Journal, 13, 5–17.

    Article  PubMed  Google Scholar 

  14. American Academy of Pediatrics. The National Center of medical home initiatives for children with special needs. Fact Sheets: A new and improved definition of family centered care. Accessed on September 14, 2009. http://www.medicalhomeinfo.org/publications/family.html.

  15. Institute for Family-Centered Care, American Academy of Pediatrics. (2003). Committee on Hospital Care Policy Statement. Family-Centered Care and the Pediatrician’s Role. Pediatrics, 112:691–696.

    Google Scholar 

  16. Lindeke, L. L., Leonard, B. J., Presler, B., & Garwick, A. (2002). Family-centered care coordination for children with special needs across multiple settings. Journal of Pediatric Health Care, 16, 290–297.

    PubMed  Google Scholar 

  17. American Academy of Pediatrics. (2008). The Medical Home for children: Financing principles. Accessed October 16, 2009. http://www.aap.org/visit/MHfinanceprin.pdf.

  18. Center for Disease Control and Prevention, National Center for Health Statistics. Accessed on October 11, 2009. http://www.cdc.gov/nchs/.

  19. Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., & Skalland B. J. (2008). Design and operation of the National Survey of Children with Special Health Care Needs, 2005–2006. National Center for Health Statistics. Vital Health Statistics 1(45). Accessed on October 11, 2009. http://www.cdc.gov/nchs/data/series/sr_01/sr01_045.pdf.

  20. Blewett, L. A., Johnson, P. J., Lee, B., & Scal, P. B. (2008). When a usual source of care and usual provider matter: Adult prevention and screening services. Journal of General Internal Medicine, 23(9), 1354–1360.

    Article  PubMed  Google Scholar 

  21. Holmbeck, G. (1997). Toward terminological, conceptual, and statistical clarity in the study of mediators and moderators: Examples from the child-clinical and pediatric psychology literatures. Journal of Consulting and Clinical Psychology, 65(4), 599–610.

    Article  CAS  PubMed  Google Scholar 

  22. Preacher, K. J., & Leonardelli, G. J. Calculation for the Sobel Test. An interactive calculation tool for mediation tests. Accessed October 11, 2009. http://people.ku.edu/~preacher/sobel/sobel.htm.

  23. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. (2002). Consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6):1304–1306.

    Google Scholar 

  24. Rosen, D. S., Blum, R. W., Britto, M., Sawyer, S. M., & Siegel, D. M. (2003). Transition to adult health care for adolescents and young adults with chronic conditions. Position paper for the Society for Adolescent Medicine. Journal of Adolescent Health, 33, 309–311.

    Article  PubMed  Google Scholar 

  25. Garwick, A. W., Kohrman, C., Wolman, C., & Blum, R. W. (1998). Families’ recommendations for improving services for children with chronic conditions. Archives of Pediatrics and Adolescent Medicine, 152, 440–448.

    CAS  PubMed  Google Scholar 

  26. Scal, P. (2002). Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics, 110(6), 1315–1321.

    PubMed  Google Scholar 

  27. White, P. H. (2002). Access to health care: Health insurance considerations for young adults with special health care needs/disabilities. Pediatrics, 110(6), 1328–1335.

    PubMed  Google Scholar 

  28. Lotstein, D. S., Inkelas, M., Hays, R. D., Halfon, N., & Brook, B. (2008). Access to care for youth with special health care needs in the transition to adulthood. Journal of Adolescent Health, 43, 23–29.

    Article  PubMed  Google Scholar 

  29. Greenen, S. J., Powers, L. E., & Sells, W. (2003). Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. Journal of Adolescent Health, 32, 225–233.

    Article  Google Scholar 

  30. Goetz, A. L., Gavin, W., & Lane, S. J. (2000). Measuring parent/professional interaction in early intervention: Validity and reliability. The Occupational Therapy Journal of Research, 20(4), 222–240.

    Google Scholar 

  31. Family-Centered Care Self-Assessment Tool. Family Voices. (2008). Accessed on September 14, 2009. http://www.familyvoices.org/pub/projects/fcca_FamilyTool.pdf.

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Acknowledgments

This journal article was supported in part by the Adolescent Health Protection Research Training Program (School of Nursing, University of Minnesota) grant number T01-DP000112 (PI: Bearinger) from the Centers for Disease Control and Prevention (CDC) and “Entry into Adult Care for Youth with Chronic Conditions” (Medical School, University of Minnesota) grant number K08 HS015511 (PI: Scal) from the Agency for Healthcare Research and Quality. Journal article contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.

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Authors and Affiliations

  1. Center for Adolescent Nursing, School of Nursing, University of Minnesota, 5-140 Weaver-Densford Hall, 308 Harvard Street SE, Minneapolis, MN, 55455, USA

    Naomi N. Duke

  2. Division of Academic General Pediatrics, Department of Pediatrics, Medical School, University of Minnesota, 3rd Floor West, 717 Delaware Street SE, Minneapolis, MN, 55414, USA

    Naomi N. Duke & Peter B. Scal

  3. Department of Sociology, University of Minnesota, 909 Social Sciences, 267 19th Ave South, Minneapolis, MN, 55455, USA

    Naomi N. Duke

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  1. Naomi N. Duke
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  2. Peter B. Scal
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Correspondence to Naomi N. Duke.

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Duke, N.N., Scal, P.B. Adult Care Transitioning for Adolescents with Special Health Care Needs: A Pivotal Role for Family Centered Care. Matern Child Health J 15, 98–105 (2011). https://doi.org/10.1007/s10995-009-0547-1

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