Assessing the Congruence of Transition Preparedness as Reported by Parents and Their Adolescents with Special Health Care Needs
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- 作者：Caprice Knapp (1)
I-Chan Huang (1)
Melanie Hinojosa (1)
Kimberly Baker (1)
Phyllis Sloyer (2) - 关键词：Adolescent ; Congruence ; Medicaid ; Special health care needs ; Transition
- 刊名：Maternal and Child Health Journal
- 出版年：2013
- 出版时间：February 2013
- 年：2013
- 卷：17
- 期：2
- 页码：352-358
- 全文大小：187KB
- 参考文献：1. McPherson, M., Arango, P., Fox, H., et al. (1998). A new definition of children with special health care needs. / Pediatrics, / 102, 137-40. CrossRef
2. Center for Disease Control and Prevention, National Center for Health Statistics. (2006). / State and local area integrated telephone survey, national survey of children with special health care needs. Available at http://mchb.hrsa.gov/chscn/state_data/fl.htm. Accessed April 10, 2006.
3. US Department of Health and Human Services, Maternal Child Health Bureau. (2001). / All aboard the 2010 express: A 10-year plan to achieve community-based services for children and youth with special health care needs and their families. Washington, DC: Maternal and Child Health Bureau.
4. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. (2002). A consensus statement on health care transitions for young adults with special health care needs. / Pediatrics, / 110, 1304-306.
5. Reiss, J., Gibson, R., & Walker, L. (2005). Health care transition: Youth, family, and provider perspectives. / Pediatrics, / 115, 112-20. CrossRef
6. Reiss, J., & Gibson, R. (2002). Health care transition: Destination unknown. / Pediatrics, / 110, 1307-314.
7. Lotstein, D., MacPherson, M., Strickland, B., et al. (2005). Transition planning for youth with special health care needs from the National Survey of Children with Special Health Care Needs. / Pediatrics, / 115, 1562-568. CrossRef
8. Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. / Pediatrics, / 115, 1607-612. CrossRef
9. Telfair, J., Meyers, J., & Drezner, S. (1994). Transfer as a component of the transition of adolescents with sickle cell disease to adult health care: Adolescents, adult and parent perspectives. / Journal of Adolescent Health, / 15, 1558-565. CrossRef
10. Nishikawa, B. R., Daaleman, T. P., & Nageswaran, S. (2011). Association of provider scope of practice with successful transition for youth with special health care needs. / Journal of Adolescent Health, / 48, 209-11. CrossRef
11. Casillas, J., Kahn, K. L., Doose, M., et al. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. / Psychooncology, / 19, 982-90. CrossRef
12. Hauser, E. S., & Dorn, L. (1999). Transitioning adolescents with sickle cell disease to adult-centered care. / Pediatric Nursing, / 25, 479-88.
13. Florida Department of Health, Children’s Medical Services. (2005). / Envisioning my future: A young person’s guide to health care transition. Tallahassee, FL: Florida Department of Health. Available at: http://hctransitions.ichp.ufl.edu/pdfs/envisioning_my_future.pdf. Accessed February 13, 2012.
14. Wojciechowski, E., Hurtig, A., & Dorn, L. (2002). A natural history 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, 18-7. CrossRef
15. Patterson, D., & Lanier, C. (1999). Adolescent health transitions: Focus group study of teens and young adults with special health care needs. / Family & Community Health, / 22, 43-8. CrossRef
16. Flume, P., Anderson, D., Hardy, K., & Grey, S. (2001). Transition programs in cystic fibrosis centers: Perceptions of pediatric and adult program directors. / Pediatric Pulmonology, / 31, 443-50. CrossRef
17. Anderson, D., Flume, P., Hardy, K., & Grey, S. (2002). Transition programs in cystic fibrosis centers: Perceptions of patients. / Pediatric Pulmonology, / 33, 327-31. CrossRef
18. Youngblade, L., & Shenkman, E. (2003). Congruence between parents-and adolescents-reports of special health care needs in a Title XXI program. / Journal of Pediatric Psychology, / 28, 393-01. CrossRef
19. Cohen, J. (1960). A coefficient of agreement for nominal scales. / Educational and Psychological Measurement, / 10, 37-6. CrossRef
20. Fayers, P., & Machen, D. (2000). / Quality of life assessment, analysis, and interpretation. Chichester: Wiley.
21. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2008). / The national survey of children with special health care needs chartbook 2005-em class="a-plus-plus">2006. Rockville, MD: U.S. Department of Health and Human Services. Available at: http://mchb.hrsa.gov/cshcn05/MCO/06yrts.htm. Accessed March 7, 2011.
22. van Staa, A., van der Stege, H. A., Jedeloo, S., Moll, H. A., & Hilberink, S. R. (2011). Readiness to transfer to adult care of adolescents with chronic conditions: Exploration of associated factors. / Journal of Adolescent Health, / 48, 295-02. CrossRef
23. Rutishauser, C., Akre, C., & Suris, J. C. (2011). Transition from pediatric to adult health care: Expectations of adolescents with chronic disorders and their parents. / European Journal of Pediatrics, / 170, 865-71. CrossRef
24. Lotstein, D. S., Kuo, A. A., Strickland, B., & Tait, F. (2010). The transition to adult health care for youth with special health care needs: Do racial and ethnic disparities exist? / Pediatrics, / 126(Suppl 3), S129–S136. CrossRef
25. Shenkman, E., Knapp, C., Sappington, D., Vogel, B., & Schatz, D. (2007). Persistence of high health care expenditures among children in Medicaid. / Medical Care Research and Review, / 64, 304-30. CrossRef - 作者单位：Caprice Knapp (1)
I-Chan Huang (1)
Melanie Hinojosa (1)
Kimberly Baker (1)
Phyllis Sloyer (2)
1. Department of Health Outcomes and Policy, College of Medicine, University of Florida, 1329 SW 16th Street, Gainesville, FL, 32608, USA
2. Florida Children’s Medical Services Network Division, Tallahassee, FL, USA
文摘
Several studies have investigated how prepared adolescents are to transition to adult health care and barriers to transition for adolescents with special health care needs. The majority of these studies, however, have only assessed these experiences from the parents-point of view. Our study aims to assess the congruence of adolescents and parents reported transition planning and the factors associated with planning. A secondary data analysis was conducted using telephone survey data. Data were collected from parents and adolescents with special health care needs who received health care through Florida’s Title V public insurance program. The final sample included 376 matched pairs of adolescent-parent surveys. To assess health care transition planning, respondents were asked if discussions had occurred with the adolescents-doctor, nurse, or with each other. Parents reported higher levels of planning than adolescents. Results show the lowest level of agreement between the parent and adolescent reports (κ?<?0.2) and the highest level of agreement when parents and adolescents were asked if they discussed transition with each other (κ?=?0.19). Regression results suggest that older adolescents are more prepared (vs. younger) and that adolescents whose parents have lower educational attainment are less prepared for transition. Results from this study suggest that there may be miscommunication around discussions related to transition, although further research is warranted. It is important to ensure that adolescents, not just parents, have a thorough understanding of transition since they will ultimately be responsible for their own health care once they reach adulthood.