Financial and psychological stressors associated with caring for children with disability

Families, Systems and Health

Volumn 32, Issue 3, 2014, Pages 280-290

  Goudie, Anthony ^a   Narcisse, Marie Rachelle ^b   Hall, David E ^c   Kuo, Dennis Z ^a  

^a UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES   (United States)

^b University of Arkansas   (United States)

^c MONROE CARELL JR CHILDREN S HOSPITAL AT VANDERBILT   (United States)

Author keywords

Caregiver stress; Disability; Distress

Indexed keywords

CAREGIVER; CHILD; ECONOMICS; FAMILY HEALTH; FEMALE; HANDICAPPED CHILD; HUMAN; LONG TERM CARE; MENTAL STRESS; PSYCHOLOGY; QUESTIONNAIRE;

CAREGIVERS; CHILD; DISABLED CHILDREN; FAMILY HEALTH; FEMALE; HUMANS; LONG-TERM CARE; STRESS, PSYCHOLOGICAL; SURVEYS AND QUESTIONNAIRES;

EID: 84937816066     PISSN: 10917527     EISSN: None     Source Type: Journal    
DOI: 10.1037/fsh0000027     Document Type: Article

References (38)

1. Anderson, L., Larson, S., Lakin, C., & Kwak, N. (2002). Children with disabilities: Social roles and family impacts in the NHIS DD Data Brief. Minneapolis, MN: University of Minnesota, Institute on Community Integration.
2. Bethell, C. D., Read, D., Stein, R. E., Blumberg, S. J., Wells, N., & Newacheck, P. W. (2002). Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2, 38-48. doi:10.1367/1539-4409(2002)002<0038:ICWSHC>2.0.CO;2
3. Brehaut, J. C., Kohen, D. E., Garner, R. E., Miller, A. R., Lach, L. M., Klassen, A. F., & Rosenbaum, P. L. (2009). Health among caregivers of children with health problems: Findings from a Canadian population-based study. American Journal of Public Health, 99, 1254 -1262. doi:10.2105/AJPH.2007.129817
4. Casey, P. H., Lyle, R. E., Bird, T. M., Robbins, J. M., Kuo, D. Z., Brown, C., ... Burns, K. (2011). Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. Archives of Pediatric and Adolescent Medicine, 165, 392-398. doi:10.1001/archpediatrics.2011.5
5. Cohen, P. N., & Petrescu-Prahova, M. (2006). Gendered living arrangements among children with disabilities. Journal of Marriage and Family, 68, 630-638. doi:10.1111/j.1741-3737.2006.00279.x
6. Conger, R. D., Conger, K. J., Elder, G. H., Jr., Lorenz, F. O., Simons, R. L., & Whitbeck, L. B. (1992). A family process model of economic hardship and adjustment of early adolescent boys. Child Development, 63, 526-541. doi:10.2307/1131344
7. Davidoff, A. J. (2004). Insurance for children with special health care needs: Patterns of coverage and burden on families to provide adequate insurance. Pediatrics, 114, 394-403. doi:10.1542/peds.114.2.394
8. Doig, J. L., McLennan, J. D., & Urichuk, L. (2009). "Jumping through hoops": parents' experiences with seeking respite care for children with special needs. Child: Care, Health and Development, 35, 234-242. doi:10.1111/j.1365-2214.2008.00922.x
9. Eisenhower, A. S., Baker, B. L., & Blacher, J. (2009). Children's delayed development and behavior problems: Impact on mothers' perceived physical health across early childhood. Social Science & Medicine, 68, 89 -99. doi:10.1016/j.socscimed.2008.09.033
10. Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the selfassessed social and psychological impact of the child's difficulties. Journal of Intellectual Disability Research, 47, 385-399. doi:10.1046/j.1365-2788.2003.00498.x
11. Ganz, M. L., & Tendulkar, S. A. (2006). Mental health care services for children with special health care needs and their family members: Prevalence and correlates of unmet needs. Pediatrics, 117, 2138-2148. doi:10.1542/peds.2005-1531
12. Gordon, J. B., Colby, H. H., Bartelt, T., Jablonski, D., Krauthoefer, M. L., & Havens, P. (2007). A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Archives of Pediatric and Adolescent Medicine, 161, 937-944. doi: 10.1001/archpedi.161.10.937
13. Goudie, A., Havercamp, S., Jamieson, B., & Sahr, T. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132, e476 -e483. doi:10.1542/peds.2013-0644
14. Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19, 417-425. doi:10.1007/s10882-007-9060-x
15. Hagenaars, J. A., & McCutcheon, A. L. (Eds.). (2002). Applied latent class analysis. Cambridge, UK: Cambridge University Press. doi:10.1017/CBO9780511499531
16. Hogan, D. P., Rogers, M. L., & Msall, M. E. (2000). Functional limitations and key indicators of wellbeing in children with disability. Archives of Pediatric and Adolescent Medicine, 154, 1042-1048. doi:10.1001/archpedi.154.10.1042
17. ICF Macro. (2011). 2010 Ohio Family Health Survey methodology report. Retrieved April 25, 2013, from http://grc.osu.edu/omas/datadownloads/ofhsoehspublicdatasets/index.cfm
18. Jeffrey, A. E., & Newacheck, P. W. (2006). Role of insurance for children with special health care needs: A synthesis of the evidence. Pediatrics, 118, e1027-1038. doi:10.1542/peds.2005-2527
19. Kessler, R. C., Barker, P. R., Colpe, L. J., Epstein, J. F., Gfroerer, J. C., Hiripi, E., ... Zaslavsky, A. M. (2003). Screening for serious mental illness in the general population. Archives of General Psychiatry, 60, 184-189. doi:10.1001/archpsyc.60.2.184
20. Kuhlthau, K., Hill, K. S., Yucel, R., & Perrin, J. M. (2005). Financial burden for families of children with special health care needs. Maternal and Child Health Journal, 9, 207-218. doi:10.1007/s10995-005-4870-x
21. Kuo, D. Z., Cohen, E., Agrawal, R., Berry, J. G., & Casey, P. H. (2011). A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of Pediatric and Adolescent Medicine, 165, 1020-1026. doi:10.1001/archpediatrics.2011.172
22. Lach, L. M., Kohen, D. E., Garner, R. E., Brehaut, J. C., Miller, A. R., Klassen, A. F., & Rosenbaum, P. L. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation, 31, 741-752. doi:10.1080/08916930802354948
23. Liptak, G. S., Burns, C. M., Davidson, P. W., & McAnarney, E. R. (1998). Effects of providing comprehensive ambulatory services to children with chronic conditions. Archives of Pediatric and Adolescent Medicine, 152, 1003-1008. doi: 10.1001/archpedi.152.10.1003
24. MacDonald, H., & Callery, P. (2008). Parenting children requiring complex care: A journey through time. Child: Care, Health and Development, 34, 207-213. doi:10.1111/j.1365-2214.2007.00790.x
25. Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2012). Indicators of distress in families of children with cerebral palsy. Disability and Rehabilitation, 34, 1202-1207. doi:10.3109/09638288.2011.638035
26. McCann, D., Bull, R., & Winzenberg, T. (2012). The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 16, 26-52. doi:10.1177/1367493511420186
27. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., ... Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102, 137-139. doi:10.1542/peds.102.1.137
28. Mullins, L. L., Aniol, K., Boyd, M. L., Page, M. C., & Chaney, J. M. (2002). The influence of respite care on psychological distress in parents of children with developmental disabilities: A longitudi-nal study. Children's Services: Social Policy, Research, & Practice, 5, 123-138. doi:10.1207/S15326918CS0502_06
29. Muthén, L. K., & Muthén B. O. (1998 -2010). Mplus users guide (6th ed.). Los Angeles, CA: Muthén & Muthén.
30. Nageswaran, S. (2009). Respite care for children with special health care needs. Archives of Pediatric and Adolescent Medicine, 163, 49 -54. doi: 10.1001/archpediatrics.2008.504
31. Neff, J. M. (2009). Respite care: An essential yet unmet need for families with children with special health care needs. Archives of Pediatric and Adolescent Medicine, 163, 89 -90. doi:10.1001/archpediatrics.2008.527
32. Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42, 413-426. doi: 10.1352/0047-6765(2004)42_413:EIOCAM_2.0.CO;2
33. Peter, S., Chaney, G., Zappia, T., Van Veldhuisen, C., Pereira, S., & Santamaria, N. (2011). Care coordination for children with complex care needs significantly reduces hospital utilization. Journal for Specialists in Pediatric Nursing, 16, 305-312. doi:10.1111/j.1744-6155.2011.00303.x
34. Porterfield, S. (2002). Work choices of mothers in families with children with disabilities. Journal of Marriage and Family, 64, 972-981. doi:10.1111/j.1741-3737.2002.00972.x
35. Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12, 679 -683. doi: 10.1007/s10995-007-0307-z
36. Shattuck, P. T., & Parish, S. L. (2008). Financial burden in families of children with special health care needs: Variability among states. Pediatrics, 122, 13-18. doi:10.1542/peds.2006-3308
37. Strunk, J. (2010). Respite care for families of special health care needs children: A systematic review. Journal of Developmental and Physical Disabilities, 22, 615-630. doi:10.1007/s10882-010-9190-4
38. van Dyck, P. C., Kogan, M. D., McPherson, M. G., Weissman, G. R., & Newacheck, P. W. (2004). Prevalence and characteristics of children with special health care needs. Archives of Pediatric and Adolescent Medicine, 158, 884 -890. doi: 10.1001/archpedi.158.9.884