Top

Published in:

01-03-2010

The Well-Being of Parental Caregivers of Children with Activity Limitations

Authors: Karen Kuhlthau, Robert Kahn, Kristen S. Hill, Sangeeth Gnanasekaran, Susan L. Ettner

Published in: Maternal and Child Health Journal | Issue 2/2010

Abstract

This paper describes well-being (health status/quality of life, healthcare utilization, employment, and financial status) of parental caregivers of children with activity limitations and compares their well-being to parental caregivers with children without activity limitations. Using Medical Expenditure Panel Survey data from 1996 to 2001, we examined the well-being of parents of children with and without an activity limitation. Children were considered as having an activity limitation if they reported a limitation in school, play or social activities. Analyses include weighted descriptive statistics and multivariable regressions. Seventy-five percentage of parents of children with activity limitations experienced at least one adverse outcome compared to 66% of parents of children without activity limitations. Parents of children with activity limitations exhibited poorer reported quality of life as indicated by lower SF-12 physical health scores (coefficient = −2.24 CI −3.38 to −1.11) and lower EuroQol scores (coefficient = −.07 CI −.10 to −.03). Parents of children with activity limitations have slightly higher utilization of sick visits. One measure of preventive care use was not significant and one showed a slight increase in use among parents of children with activity limitations. Employment and financial outcomes were less favorable for parents of children with activity limitations. Across a variety of domains, parental caregivers of children with activity limitations are at a disadvantage compared to other parents suggesting that public and private parental supports might be helpful.

Newacheck, P. W., Budetti, P. P., & McManus, P. (1984). Trends in childhood disability. American Journal of Public Health, 74, 232–236.CrossRefPubMed

Perrin, J. M., Bloom, S. R., & Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 27, 2755–2759.CrossRef

Kuhlthau, K., Bloom, S., Marthell, M., & Mohamed, H. (2006). Policies and programs relevant to CSHCN. In E. J. Sobo & P. S. Kurtin (Eds.), Optimizing care for children with special health care needs in their early years. Baltimore MD: Brookes Publishing.

Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12, 679–683.CrossRefPubMed

Leiter, V., Kraus, M. W., Anderson, B., & Wells, N. (2004). The consequences of caring: Effects of mothering a child with special needs. Journal of Family Issues, 25, 379–403.CrossRef

Kuhlthau, K., & Perrin, J. M. (2001). Child health status and parental employment. Archives of Pediatrics and Adolescent Medicine, 155, 1346–1350.PubMed

Heck, K. E., & Makue, D. M. (2000). Parental employment and health insurance coverage among school-aged children with special health care needs. American Journal of Public Health, 90, 1856–1860.CrossRefPubMed

Leonard, B., Brust, J. D., & Sapienza, J. J. (1992). Financial and time costs to parents of severely disabled children. Public Health Reports, 107, 302–312.PubMed

Corden, A., Sloper, P., & Sainsbury, R. (2002). Financial effects for families after the death of a disabled or chronically ill child: A neglected dimension of bereavement. Child Care Health Development, 28, 199–204.CrossRef

10.

Strickland, B., et al. (2004). Access to the medical home: Results of the National Survey of children with special health care needs. Pediatrics, 113, 1485–1492.PubMed

11.

Kuhlthau, K., et al. (2005). Financial burden for families of children with special health care needs. Maternal and Child Health Journal, 9, 207–218.CrossRefPubMed

12.

Hwang, W., Weller, W., Ireys, H., & Anderson, G. (2001). Out-of-pocket medical spending for care of chronic conditions. Health Affairs, 20, 267–278.CrossRefPubMed

13.

McGlone, K., et al. (2002). Psychological stress in adoptive parents of special needs children. Child Welfare, 81, 151–171.PubMed

14.

Raina, P., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626–e636.CrossRefPubMed

15.

Silver, E. J., Westbrook, L. E., & Stein, R. E. (1998). Relationship of parental psychological distress to consequences of chronic health conditions in children. Journal of Pediatric Psychology, 23, 5–15.CrossRefPubMed

16.

Sloper, P., & Turner, S. (1993). Risk and resistance factors in the adaptation of parents of children with severe physical disability. Journal of Child Psychology and Psychiatry, 34, 167–188.CrossRefPubMed

17.

Smith, L. A., et al. (2002). Employment barriers among welfare recipients and applicants with chronically ill children. American Journal of Public Health, 92, 1453–1457.CrossRefPubMed

18.

Dyson, L. L. (1997). Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support. American Journal of Mental Retardation, 102, 267–279.CrossRefPubMed

19.

Patterson, J. M., Leonard, B. J., & Titus, J. C. (1992). Home care for medically fragile children: Impact on family health and well-being. Journal of Developmental and Behavioral Pediatrics, 13, 248–255.CrossRefPubMed

20.

Epel, E. S., et al. (2004). Accelerated telomere shortening in response to life stress. Proceedings of the National Academy of Sciences, 101, 17312–17315.CrossRef

21.

Cadman, D., et al. (1991). Children with chronic illness: Family and parent demographic characteristics and psychosocial adjustment. Pediatrics, 87, 884–889.PubMed

22.

Breslau, N. (1986). Chronic stress and major depression. Archive of General Psychiatry, 43, 309–314.

23.

Thyen, U., et al. (1998). Impact of long-term care of children assisted by technology on maternal health. Journal of Developmental and Behavioral Pediatrics, 19, 273–282.CrossRefPubMed

24.

Jessop, D. J., & Stein, R. E. K. (1991). Who benefits from a pediatric home care program? Pediatrics, 88, 497–505.PubMed

25.

Chen, A. Y., & Escarce, J. J. (2006). Effects of family structure on children’s use of ambulatory visits and prescription medications. Health Services Research, 41, 1895–19914.CrossRefPubMed

26.

Gifford, E. J., Weech-Maldonado, R., & Short, P. F. (2005). Low-income children’s preventive service use: Implicatons of parents’ Medicaid Status. Health Care Financing Review, 26, 81–94.PubMed

27.

Raina P., et al. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4. Retrieved August 25, 2004, from http://www.biomedcentral.com/1471-2431/4/1.

28.

Ware, J., et al. (1996). How to score the SF-12 physical and mental health summary scales (2nd ed.). Lincoln RI: Quality Metric, Inc., and the Health Assessment Lab.

29.

Dolan, P. (1997). Modeling valuations for EuroQoL health states. Medical Care, 35, 1095–1106.CrossRefPubMed

30.

Ware, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-Item short-form health survey: Construction of scales and preliminary tests for reliability and validity. Medical Care, 34, 220–233.CrossRefPubMed

31.

Brazier, J., et al. (2004). A comparison of the EQ-5D and SF6D across seven patient groups. Health Economics, 13, 873–884.CrossRefPubMed

32.

Guide to Clinical Preventive Services. (2007). AHRQ Publication No. 07–05100, September 2007. Agency for healthcare research and quality, Rockville, MD. http://www.ahrq.gov/clinic/pocketgd.htm.

33.

Newacheck, P. W., Inkelas, M., & Kim, S. E. (2004). Health services use and health care expenditures for children with disabilities. Pediatrics, 114, 79–85.CrossRefPubMed

34.

World Health Organization. (2001). The international classification of functioning, disability and health-ICF short version. Geneva: World Health Organization.

35.

Kuhlthau, K., et al. (2002). Identifying children with chronic conditions: Comparing a diagnosis list and survey methods. Ambulatory Pediatrics, 2, 58–62.CrossRefPubMed

36.

Schafer, J. L. (1997). Analysis of incomplete multivariate data. London, UK: Chapman & Hall.

37.

Rubin, D. B. (1996). Multiple imputation after 18+ years. Journal of the American Statistical Association, 91, 473–489.CrossRef

38.

Yucel, R. M., Schafer, J. L. (2002). Computational strategies for multivariate linear mixed-effects models with missing values. Journal of Computational and Graphical Statistics, 11, 437–457.

39.

Sullivan, P. W., & Ghushchyan, V. (2006). Preference-Based EQ-5D Index Scores for chronic conditions in the United States. Medical Decision Making, 26, 410–420.CrossRefPubMed

40.

Loprest, P., & Davidoff, A. (2004). How children with special health care needs affect the employment decisions of low-income parents. Maternal and Child Health Journal, 8, 171–182.CrossRefPubMed

41.

Thyen, U., Kuhlthau, K., & Perrin, J. (1999). Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics, 103, 1235–1242.CrossRefPubMed

42.

Chung, P. J., et al. (2007). Need for and use of family leave among parents of children with special health care needs. Pediatrics, 119, e1047–e1055.CrossRefPubMed

43.

Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 159, 10–17. [erratum appears in Archives of Pediatrics and Adolescent Medicine. 2005 Apr;159(4):318].CrossRefPubMed

44.

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. [see comment].CrossRefPubMed

45.

Guendelman, S., et al. (2006). The effects of child-only insurance coverage and family coverage on health care access and use: Recent findings among low-income children. California Health Services Research, 41, 125–147.CrossRef

46.

Dubay, L., & Kenney, G. (2003). Expanding public health insurance to parents: Effects on children’s coverage under Medicaid. Health Services Research, 38, 1283–1301.CrossRefPubMed

Title: The Well-Being of Parental Caregivers of Children with Activity Limitations
Authors: Karen Kuhlthau
Robert Kahn
Kristen S. Hill
Sangeeth Gnanasekaran
Susan L. Ettner
Publication date: 01-03-2010
Publisher: Springer US
Published in: Maternal and Child Health Journal / Issue 2/2010
Print ISSN: 1092-7875
Electronic ISSN: 1573-6628
DOI: https://doi.org/10.1007/s10995-008-0434-1

Keynote webinar | Spotlight on medication adherence

Springer Medicine

The Well-Being of Parental Caregivers of Children with Activity Limitations

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 2/2010

Consanguinity and Adverse Pregnancy Outcomes: The North of Jordan Experience

Effects of Maternal Stress on Low Birth Weight and Preterm Birth Outcomes Across Neighborhoods of South Carolina, 2000–2003

A Comparison of Health Behaviors of Women in Centering Pregnancy and Traditional Prenatal Care

Nutritional Status of Mothers and Low Birth Weight in India

Vaginal Douching Among Latina Immigrants

Pregnancy Outcomes by Pregnancy Intention in a Managed Care Setting