Effective and efficient service delivery to children who rely on medical technology or ongoing medical care will become increasingly critical as technology and medical know-how grow more sophisticated. Presently, technology’s development and application threaten to outpace systems of service delivery. This article explores the present state of affairs by considering the challenges involved in planning and evaluating programs for children with special health care needs and their families. A cost-benefit model is suggested as a meaningful framework for considering challenges related to providing service in this arena and evaluating its effectiveness.
Get full access to this article
View all access options for this article.
References
1.
Amato, P.
, & Keith, B. (1991). Parental divorce and the well-being of children: A meta-analysis. Psychological Bulletin, 110(1), 26-46.
2.
Bickman, L.
(1990). Study design. In Y.Y.T. Yuan & M. Rivest (Eds.), Preserving families: Evaluation resources for practitioners and policymakers (Vol. 117, pp. 132-166), Sage focus editions. Newbury Park, CA: Sage.
3.
Bluebond-Langner, M.
(1996). In the shadow of illness: Parents and siblings of the chronically ill child. Princeton, NJ: Princeton University Press.
4.
Breslau, N.
(1988). Childhood disabilities: Economic and psychological effects. In W. A. Gordon & J. A. Herd (Eds.), Perspectives on behavioral medicine; Vol. 3. Prevention and rehabilitation. Perspectives on behavioral medicine (pp. 143-168). San Diego, CA: Academic Press.
5.
Chen, H. T.
(1990). Theory-driven evaluation. Newbury Park, CA: Sage.
6.
Cuskelly, M.
(1999). Adjustment of siblings of children with a disability: Methodological issues. International Journal for the Advancement of Counseling, 21(2), 111-124.
7.
Cuskelly, M.
, Pulman, L., & Hayes, A. (1998). Parenting and employment decisions of parents with a preschool child with a disability. Journal of Intellectual & Developmental Disability, 23(4), 319-332.
8.
Darling, R. B.
(1987). The economic and psychosocial consequences of disability: Family and society relationships. Marriage & Family Review, 11(1-2), 45-61.
9.
Gallimore, R.
, Bernheimer, L. P., & Weisner, T. S. (1999). Family life is more than managing crisis: Broadening the agenda of research on families adapting to childhood disability. In R. Gallimore & L. P. Bernheimer (Eds.), Developmental perspectives on children with high-incidence disabilities: The LEA series on special education and disability (pp. 55-80). Mahwah, NJ: Lawrence Erlbaum.
10.
Gardner, E.
(1998). Siblings of chronically ill children: Towards an understanding of process. Clinical Child Psychology & Psychiatry, 3(2), 213-227.
11.
Henry, G.
, Julnes, G., & Mark, M. (Eds.). (1998). Realist evaluation: An emerging theory in support of practice. San Francisco: Jossey-Bass.
12.
Hoare, P.
, Harris, M., Jackson, P., & Kerley, S. (1998). A community survey of children with severe intellectual disability and their families: Psychological adjustment, carer distress and the effect of respite care. Journal of Intellectual Disability Research, 42(3), 218-227.
13.
Kalnins, I. V.
(1983). Cross-illness comparison of separation and divorce among parents having a child with a life-threatening illness. Children’s Health Care, 12(2), 72-77.
14.
Kazak, A. E.
, Segal-Andrews, A. M., & Johnson, K. (1995). Pediatric psychology research and practice: A family/systems approach. In M. C. Roberts (Ed.), Handbook of pediatric psychology (2nd ed., pp. 84-104). New York: Guilford.
15.
Kazak, A. E.
, & Simms, S. (1996). Children with life-threatening illnesses: Psychological difficulties and interpersonal relationships. In F. W. Kaslow (Ed.), Handbook of relational diagnosis and dysfunctional family patterns: Wiley series in couples and family dynamics and treatment (pp. 225-238). New York: John Wiley.
16.
Kirk, S.
(1998). Families’ experiences of caring at home for a technology-dependent child: A review of the literature. Child: Care, Health & Development, 24(2), 101-114.
17.
Kleinberg, S.
(1987). Child life in the 1990s: Changing roles, changing times. Children’s Health Care, 15(4), 240-244.
18.
Lamorey, S.
(1999). Parentification of siblings of children with disability or chronic disease. In N. D. Chase (Ed.), Burdened children: Theory, research, and treatment of parentification (pp. 75-91). Thousand Oaks, CA: Sage.
19.
Marshak, L. E.
, Seligman, M., & Prezant, F. (1999). Disability and the family life cycle: Recognizing and treating developmental challenges. New York: Basic Books.
20.
Mazur, E.
, Wolchik, S. A., Virdin, L., Sandler, I. N., & West, S. G. (1999). Cognitive moderators of children’s adjustment to stressful divorce events: The role of negative cognitive errors and positive illusions. Child Development, 70(1), 231-245.
21.
McCubbin, H. I.
, Thompson, A. I., & Futrell, J. A. (1999). The dynamics of resilient families. Thousand Oaks, CA: Sage.
22.
National Health Interview Survey on Disability: 1994, Phase 1 (Version 1.22a) [CD-ROM]. (1996). Hyattsville, MD: National Center for Health Statistics (Producer and Distributor).
23.
Pawson, R.
, & Tilley, N. (1997). Realistic evaluation. London: Sage.
24.
Petr, C. G.
, Murdock, B., & Chapin, R. (1995). Home care for children dependent on medical technology: The family perspective. Social Work in Health Care, 21(1), 5-22.
25.
Pett, M. A.
, Wampold, B. E., Turner, C. W., & Vaughan-Cole, B. (1999). Paths of influence of divorce on preschool children’s psychosocial adjustment. Journal of Family Psychology, 13(2), 145-164.
26.
Quittner, A. L.
, & DiGirolamo, A. M. (1998). Family adaptation to childhood disability and illness. In R. T. Ammerman & J. V. Campo (Eds.), Handbook of pediatric psychology and psychiatry; Vol. 2. Disease, injury, and illness (pp. 70-102). Boston: Allyn & Bacon.
27.
Rossi, P.
, Freeman, H., & Lipsey, M. (1999). Evaluation: A systematic approach. Thousand Oaks: Sage.
28.
Seligman, M.
, & Darling, R. B. (1997). Ordinary families, special children: A systems approach to childhood disability (2nd ed.). New York: Guilford.
29.
Simon, H. K.
, Ledbetter, D. A., & Wright, J. (1997). Societal savings by “fast tracking” lower acuity patients in an urban pediatric emergency department. American Journal of Emergency Medicine, 15(6), 551-554.
30.
Ward, H.
, & Cavanagh, J. (1997). A descriptive study of the self-perceived needs of carers for dependants with a range of long-term problems. Journal of Public Health Medicine, 19(3), 281-287.
31.
Webster-Stratton, C.
, & Hammond, M. (1999). Marital conflict management skills, parenting style, and early-onset conduct problems: Processes and pathways. Journal of Child Psychology & Psychiatry & Allied Disciplines, 40(6), 917-927.
32.
Wherry, J. N.
, Shema, S. J., Baltz, T., & Kelleher, K. (1995). Factors associated with respite care use by families with a child with disabilities. Journal of Child & Family Studies, 4(4), 419-428.
33.
Williams, P. D.
(1997). Siblings and pediatric chronic illness: A review of the literature. International Journal of Nursing Studies, 34(4), 312-323.
