Annotated Bibliography
      Health Care Transition of Youth with Special Health Care Needs
 



Related Reading
 

American Academy of Pediatrics Committee on Child Health Financing, (1995). Guiding Principles for Managed Care Arrangements for the Health Care of Infants, Children, Adolescents, and Young Adults. Pediatrics. 95(4): 613-615. 

Anon. Morbidity and Mortality Weekly Report (August 25, 1995). Disabilities among children aged 17 years-United States, 1991-1992. (609-613). U.S. Department of Health and Human Services. 

Bartholomew, L.K., Schwartz, P., (1991). Teaching and supporting self-management of chronic illness: an examples of translating theory into a family education program. Journal of Pediatric Nursing: Nursing Care of Children and Families. 6 (3): 214-215. 

Blum, R. W., Geber, G.. (1992). Chronically ill youth. In McAnarney, E. R., Kreipe, R. E., Orr D. P., Comerci G. D. (Eds.). Textbook of Adolescent Medicine. (222-228). Philadelphia, PA: W.B. Saunders. 

Blum, R.W., and Okinow, N.A., (1993). Teenagers at Risk - A national perspective of state level services for adolescents with chronic illness of disability: Executive Summary. in Connections: The Newsletter of the National Center for Youth with Disabilities. 3(3, Supplement): 1-8. 

Brookins, GK (1993). Culture, Ethnicity, and Bicultural Competence: Implications for Children with Chronic Illness and Disability. Pediatrics, 91(5): 1056-62. 

Connelly, C.E., (1987). Self-care and the chronically ill patient. Nursing Clinics of North America. 22(3): 621-629. 

Conyard, S., Dosik, H., Krishnamurthy, M. (1980). Psychological aspects of Sickle cell anemia in adolescents. Health and Social Work, 5: 20-26.

Earl DT, Blackwelder RB. Management of chronic medical conditions in children and adolescents. Primary Care (Adolescent Medicine) 25(1):253-266. (Addresses the issue of primary care for youth with chronic medical conditions, and describes principles and approached for use by family physicians. 

Edelman, A., Schuylre, V.E. & White, P.H. (1998). Maximizing success for young adults with chronic health-related illnesses: Transition planning for education after high school. Health Resource Center Paper. (1-14.) 

Fiorentine I, Datta D, Gentle S., Hall, DM et al. (1998) Transition from school to adult life for physically disabled young people. Archives of Diseases in Childhood 79: 306-311. (This article describes the results of a study of the transition process for 87 young people with physical disabilities in three districts in UK. Results show that there is often a poor handover to adult services, and youth with CP and complex multiple problems faired worse than those with Spina Bifida or juvenile chronic arthritis. Relevant UK legislation is identified and described and weaknesses are identified.) 

Garbarino, J., (1982). Human ecology and competence in adolescence, in Garbarino, J., Adolescent Development: A Ecological Perspective. (Chapter 2) Columbus, Ohio: Charles E. Merrill Publishing Company. 

Garrison, M.T., and McQuiston, S., (1989). Chronic Illness During Childhood and Adolescence: Psychological Aspects. Newbury Park, CA: Sage Publications. 

Halpern, A.S. and Benz, M.R.. A statewide examination of secondary special education for students with mild disabilities: Implications for high school curriculum. Exceptional Child. 1987:54:122. 

Healy H, Rigby P. (1999) Promoting independence for teens and young adults with physical disabilities. Canadian Journal of Occupational Therapy. 66(5):240-248) (Description of The Independence Programme [TIP], a client-centered program that addresses participants occupational performance needs.) 

Hurtig. A.L., (1986). The "Invisible" chronic illness in adolescence, in Hurtig, A.L. and Viera, C.T.,(EDS) Sickle Cell Disease: Psychological and Psychosocial Issues. (42-61) Urbana and Chicago, IL: University of Illinois Press. 

Kellerman, J.. (1980). Psychological effects of illness in adolescence. I. Anxiety, self-esteem, and perception of control. The Journal of Pediatrics. 97:126. 

Kliewer, W. and Lewis, H. (1995). Family Influences on Coping Processes in Children and Adolescents with Sickle Cell Disease. Journal of Pediatric Psychology. 20 (4): 511-525. 

LePontois, J., (1986). Adolescents with Sickle cell anemia: Developmental issues, in Hurtig, A.L. and Viera, C.T.,(EDS) Sickle Cell Disease: Psychological and Psychosocial Issues. (75-83) Urbana and Chicago, IL: University of Illinois Press. 

Magrab, P. R. & Millar, H. E. C., (Eds). (1987). Growing up and getting medical care: Youth with special health care needs. Proceedings from the Surgeon General's Conference. Washington, DC: Georgetown University Child Development Center. 

Mattsson, A.. (1972). Long-Term physical illness in childhood: A challenge to psychosocial adaptation., Pediatrics, 50:801. 

McArnarney, E., (1985). Social maturation: A challenge for handicapped and chronically ill adolescents, Adolescent Health Care, 6: 90-101. 

National Center for Youth with Disabilities (1995). Transition from Child to Adult Health Care Services: A National Survey, The National Center for Youth with Disabilities, University of Minnesota, Box 721, 420 Delaware St. SE, Minneapolis, MN 55455, 1995 

National Center for Youth with Disabilities (1998). CYDLINE Reviews: A perspective on changes in health care for children and youth with special health needs, University of Minnesota, Box 721, 420 Delaware St. SE, Minneapolis, MN 55455. 

Orr, D.P. Pless, I.B., Satterwhite, B., Wells, S.C. (1984). Psychosocial implications of chronic illness in adolescence. Journal of Pediatrics, 104: 152-57. 

Palfrey, J.S., Samuels, R.C., Haynie, M., Cammisa, M.L., (1994). Health Care Reform: What's in it for Children with Chronic Illness and Disability. Journal of School Health. 64 (6):234-237. 

Patterson, J.M., and Blum, R.W., (1993). A Conference on Culture and Chronic Illness in Childhood: Conference Summary. Pediatrics, 91(5): 1025-10030. 

Perrin, J.M., Guyer, B., and Lawrence, J.M., (1992). Health care services for children and adolescents. in The Future of Our Children: U.S. Health Care For Children. 2(2): 58 - 77. 

Reinholt, P.M., and Oberg, C.. (1993). Teens Can't get by with status quo. in Connections: The Newsletter of the National Center for Youth with Disabilities. 3:1. 

Rojewski, J. (1989). A rural based transition model for students with learning disabilities: A demonstration. Journal of Learning Disabilities. 22(10): 613-20. 

Rosen, D.S. (1992). Transition from pediatric Care: Barriers still exist. in Connections: The Newsletter of the National Center for Youth with Disabilities. 3(2): 1-2. 

Shapland, C., (1999). Sexuality Issues for youth with Disabilities and Chronic Conditions. An occasional brief for the Institute for Child Health policy. Gainesville, Florida: Institute for Child Health Policy. 

Spencer, C.H., Fife, R.Z., Rabinovick, C.E., (1995). The School Experience of Children with Arthritis: Coping in the 1990s and Transition into Adulthood. Pediatric Clinics of North America. 42 (5): 1285-1298. 

Stein, R.E.K., Bauman, L.J., Westbrook, L., Coupey, & Ireys, H.T. (1993). Framework for identifying children who have chronic conditions: The case for a new definition. Pediatrics, 122(3): 342-347. 

Telfair, J. & Gardener, M., (in press). African American Adolescents with Sickle Cell Disease: Support Groups and Psychological Well-Being. Journal of Black Psychology. (Fall, 1999) 

Telfair, J. Factors in the long term adjustment of children and adolescents with sickle cell disease: Conceptualizations and review of the literature.(1994). Journal Health and Social Policy, 5(3/4): 69-96. 

Thompson, R.J., Gil, K.M., Burback, D.J., Keith, B.R., Kinney, T.R., (1993). Psychological adjustment of mothers of children and adolescent with sickle cell disease: the role of stress, coping methods, and family functioning. Journal of Pediatric Psychology, 18 (5): 549-559. 

Wagner. M., (1992) A second Look. in Wagner, M., D'Amico, R., Marder, C., Newman, L., and Blockorby, J., What Happens Next? Trends in Post-School Outcomes of Youth with Disabilities. The Second Comprehensive Report from the National Longitudinal Transition Study of Secondary Special Education Students. (1-1, 1-15). Menlo Park, Ca: SRI International. 

Weitzman, M.. School and Peer Relations. Pediatric Clinics of North America. 1984:31:59. 

White, P. and Shear, E.S., (1992). Transition/Job Readiness for adolescents with Juvenile Arthritis and other chronic illness, Journal of Rheumatology, 19 (33, Supplement): 23. 

Ziring, P.R., Kastner, T., Driedman, D.L., Pond, W., Barnett, M.L., Sonnenberg, E.M., & Strassburger, K. (1998). Provision of health care for persons with developmental disabilities living in the community: The Morristown model. JAMA, 260(10): 1439-1444. 

 


  

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