Determinants of needs of families of children and youth with cerebral palsy

Children's Health Care

Volumn 40, Issue 2, 2011, Pages 130-154

  Almasri, Nihad A ^a,d   Palisano, Robert J ^a,b   Dunst, Carl J ^c   Chiarello, Lisa A ^a,b   O'Neil, Margaret E ^a   Polansky, Marcia ^a  

^a DREXEL UNIVERSITY   (United States)

^b SHRINERS HOSPITALS FOR CHILDREN   (United States)

^c Orelena Hawks Puckett Institute   (United States)

^d UNIVERSITY OF JORDAN   (Jordan)

Author keywords

[No Author keywords available]

Indexed keywords

ADAPTIVE BEHAVIOR; ARTICLE; CEREBRAL PALSY; CHILD; CHILD BEHAVIOR; CHILD HEALTH; COMMUNICATION DISORDER; COMMUNITY; COMMUNITY PROGRAM; DAILY LIFE ACTIVITY; FAMILY; FAMILY ASSESSMENT; FAMILY ATTITUDE; FAMILY FUNCTIONING; FEMALE; FINANCIAL MANAGEMENT; HEALTH CARE ACCESS; HEALTH CARE AVAILABILITY; HEALTH SURVEY; HUMAN; INCOME; JUVENILE; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; MOTOR PERFORMANCE; PARENT; QUESTIONNAIRE; SPEECH DISORDER; STRUCTURAL EQUATION MODELING;

EID: 79957835607     PISSN: 02739615     EISSN: 15326888     Source Type: Journal    
DOI: 10.1080/02739615.2011.564568     Document Type: Article

References (45)

1. Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36, 1-10.
2. Bailey, D. B., Jr., Blasco, P. M., & Simeonsson, R. J. (1992). Needs expressed by mothers and fathers of young children with disabilities. American Journal of Mental Retardation, 97, 1-10.
3. Bailey, D. B., Jr., & Simeonsson, R. J. (1988). Assessing needs of families with handicapped infants. Journal of Special Education, 22, 117-127.
4. Beavers,W. R., & Hampson, R. B. (1993). Measuring family competence. In F. Walsh (Ed.), Normal family processes (2nd ed., pp. 37-103). New York, NY: Guilford.
5. Bronfenbrenner,U. (1979). The ecology of human development. Cambridge,MA: Harvard University Press.
6. Brown, M., & Gordon,W. A. (1987). Impact of impairment on activity patterns of children. Archives of Physical Medicine and Rehabilitation, 68, 828-832. (Pubitemid 18018505)
7. Cohen, J. (1992). A power primer. Psychological Bulletin, 112, 155-159.
8. Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2008). Research synthesis and meta analysis of studies of family centered practices [Monograph]. Asheville, NC: Winterberry Press.
9. Dyke, P., Buttigieg, P., Blackmore A. M., & Ghose, A. (2006). Use of the Measure of Process of Care for families (MPOC-56) and service providers (MPOC-SP) to evaluate family-centred services in a paediatric disability setting. Child: Care, Health and Development, 32, 167-176. (Pubitemid 43362170)
10. Ellis, J. T., Luiselli, J. K., Amirault, D., Byrne, S., O?Malley-Cannon, B., Taras, M., : : : Sisson, R. W. (2002). Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. Journal of Developmental and Physical Disabilities, 14, 191-202. (Pubitemid 37134443)
11. Farmer, J. E., Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J. (2004). Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29, 355-367. (Pubitemid 38856427)
12. Glenn, S., Cunningham, C., Poole, H., Reeves, D., & Weindling, M. (2009). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development, 35, 71-78.
13. Hair, J. F., Jr., Anderson, R. E., Tatham, R. L., & Black, W. C. (1995). Multivariate data analysis with readings (4th ed.). Englewood Cliffs, NJ: Prentice Hall.
14. Hendriks, A. H., De Moor, J. M., Oud, J. H., & Franken,W. M. (2000). Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes. Clinical Rehabilitation, 14, 506-517.
15. Hutchison, P., & McGill, J. (1992). Leisure, integration, and community. Concord, Ontario, Canada: Leisurability.
16. King, G., Cathers, T., King, S., & Rosenbaum, P. (2001). Major elements of parents? satisfaction and dissatisfaction with pediatric rehabilitation services. Children's Health Care, 30, 111-134. (Pubitemid 32488467)
17. King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., : : : Young, N. (2004). Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc.
18. King, G., Tucker, M. A., Baldwin, P., Lowry, K., LaPorta, J., & Martens, L. (2002). A life needs model of pediatric service delivery: Services to support community participation and quality of life for children and youth with disabilities. Physical and Occupational Therapy in Pediatrics, 22(2), 53-77. (Pubitemid 34976915)
19. King, S. M., Rosenbaum, P. L., & King, G. A. (1995). The Measures of Processes of Care. Hamilton, Ontario, Canada: McMaster University, CanChild Centre for Childhood Disability Research.
20. King, S. M., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology, 11, 78-86. (Pubitemid 38586075)
21. Law, M., & Dunn, W. (1993). Perspectives on understanding and changing the environments of children with disabilities. Physical & Occupational Therapy in Pediatrics, 13(3), 1-17.
22. Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., & Rosenbaum, P. (2003). Factors affecting family-centred service delivery for children with disabilities. Child: Care, Health and Development, 29, 357-366. (Pubitemid 37038621)
23. Leonard, B., Brust, J. D., & Sapienza, J. J. (1992). Financial and time costs to parents of severely disabled children. Public Health Reports (Washington, D.C.: 1974), 107, 302-312.
24. Lukemeyer, A., Meyers, M. K., & Smeeding, T. (2000). Expensive children in poor families: Outof- pocket expenditures for the care of disabled and chronically ill children in welfare families. Journal of Marriage and the Family, 62, 399-415.
25. Majnemer, A., Shevell, M., Law, M., Birnbaum, R., Chilingaryan, G., Rosenbaum, P., & Poulin, C. (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine and Child Neurology, 50, 751-758.
26. Marcenko, M. O., & Smith, L. K. (1991). Post-adoption needs of families adopting children with developmental disabilities. Children and Youth Services Review, 13, 413-424.
27. Mink, I. T., Nihira, K., & Meyers, C. E. (1983). Taxonomy of family life styles. I. Homes with TMR children. American Journal of Mental Deficiency, 87, 484-497. (Pubitemid 13160521)
28. Moos, R. H., & Moos, B. S. (2002). A social climate scale: Family Environment Scale manual- Development, applications, research (3rd ed.). Palo Alto, CA: Mindgarden Inc.
29. Nieuwenhuijsen, C., Van der Laar, Y., Donkervoort, M., Nieuwstraten, W., Roebroeck, M. E., & Stam, H. J. (2008). Unmet needs and health care utilization in young adults with cerebral palsy. Disability and Rehabilitation, 30, 1254-1262.
30. Nitta, O., Taneda, A., Nakajima, K., & Surya, J. (2005). The relationship between the disabilities of school-aged children with cerebral palsy and their family needs. Journal of Physical Therapy Science, 17, 103-107.
31. O?Neil, M., Costigan, T., Gracely, E., & Wells, N. (2009). Parents? perspectives on access to rehabilitation services for their children with special healthcare needs. Pediatric Physical Therapy, 21, 254-260.
32. Palisano, R., Almasri, N., Chiarello, L., Orlin, M., & Maggs, J. (2010). Needs of families of children and youth with cerebral palsy: Effects of age and gross motor function of children. Child: Care, Health and Development, 36, 85-92.
33. Palisano, R., Hanna, S. E., Rosenbaum, P. L., Russell, D. J., Walter, S. D., Wood, E. P., : : : Galuppi, B. (2000). Validation of a model of gross motor function for children with cerebral palsy. Physical Therapy, 80, 974-985.
34. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and validation of a Gross Motor Function Classification System for children with cerebral palsy. Developmental Medicine and Child Neurology, 39, 214-223. (Pubitemid 27226331)
35. Perrin, E. C., Lewkowicz, C., & Young, M. H. (2000). Shared vision: Concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics, 105(1 Pt. 3), 277-285. (Pubitemid 30033251)
36. Rahi, J. S., Manaras, I., Tuomainen, H., & Lewando Hundt, G. (2004). Engaging families in health services research on childhood visual impairment: Barriers to, and degree and nature of bias in, participation. British Journal of Ophthalmology, 88, 782-787. (Pubitemid 38725588)
37. Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centered service: A conceptual framework and research review. Physical and Occupational Therapy in Pediatrics, 18, 1-20. (Pubitemid 28401887)
38. Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., : : : Jacobsson, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology, 49(Supplement 109), 8-14. (Pubitemid 46336267)
39. Schumacker, R. E., & Lomax, R. G. (2004). A beginner?s guide to structural equation modeling. Mahwah, NJ: Lawrence Erlbaum Associates, Inc.
40. Sexton, D., Burrell, B., & Thompson, B. (1992). Measurement integrity of the family needs survey. Journal of Early Intervention, 16, 343-352.
41. Sloper, P., & Turner, S. (1992). Service needs of families of children with severe physical disability. Child: Care, Health and Development, 18(5), 259-282.
42. Wood, E. P., & Rosenbaum, P. L. (2000). The Gross Motor Function Classification System for cerebral palsy: A study of reliability and stability over time. Developmental Medicine and Child Neurology, 42, 292-296.
43. World Health Organization. (2001). International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: Author.
44. Zeitlin, S. (1985). Coping Inventory: A measure of adaptive behavior. Bensenville, IL: Scholastic Testing Service.
45. Zeitlin, S., & Williamson, G. G. (1994). Coping in young children: Early intervention practices to enhance adaptive behavior and resilience. Baltimore, MD: Brookes.