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How Stable is the Well-Being of Australian Mothers Who Care for Young Children with Special Health Care Needs?

Abstract

Ninety-seven percent of children who have special health care needs are cared for by their mothers. These mothers cite that their informal care work can be intrinsically rewarding, however, the role is not without substantial difficulties and consequences. We investigated differences in the health and well-being of mothers whose young children do and do not have special health care needs. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. This study employs a matched-case control methodology to compare the experiences of a group of 292 mothers whose children are identified as having long term special health care needs to those mothers whose children are typically developing at two time points; Wave 1 (2004) and Wave 3 (2008). The findings support previous research that mothers of children with special health care needs have poorer general health and mental health than mothers whose children do not have special needs. Mothers of children with special health care needs also perceived life as more difficult. Longitudinally, this study also shows that maternal well-being remains relatively stable during the years when children are transitioning to formal schooling. Implications for policy makers, practitioners and early childhood professionals are discussed.

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References

  • Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youth with autism, down syndrome, or fragile x syndrome. American Journal of Mental Retardation, 109(3), 237–254.

    Article  PubMed  Google Scholar 

  • Australian Institute of Health and Welfare. (2004). Children with disabilities in Australia. Canberra: AIHW.

    Google Scholar 

  • Baker, B. L., & Blacher, J. (2002). For better or worse? Impact of residential placement on families. Mental Retardation, 44, 1–13.

    Article  Google Scholar 

  • Baker, B. L., Blacher, J., & Olsson, M. B. (2005). Preschool children with and without developmental delay: Behaviour problems, parents’ optimism and well-being. Journal of Intellectual Disability Research, 49(8), 575–590.

    Article  PubMed  Google Scholar 

  • Baker, B. L., McIntyre, L. L., Bacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time. Journal of Intellectual Disability Research, 47(4), 217–230.

    Article  PubMed  Google Scholar 

  • Barlow, J., Powell, L., & Gilchrist, M. (2006). The influence of the training and support programme on the self-efficacy and psychological well-being of parents of children with disabilities: A controlled trial. Complementary Therapies in Clinical Practice, 12(1), 55–63.

    Article  PubMed  Google Scholar 

  • Barlow, J., Wright, C. C., Shaw, K. L., Luqmani, R., & Wyness, I. J. (2002). Maternal stressors, maternal wellbeing and children’s wellbeing in the context of juvenile idiopathic arthritis. Early Child Development and Care, 172(1), 89–98.

    Article  Google Scholar 

  • Bethell, C. D., Read, D., Stein, R. E. K., 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(1), 38–48.

    Article  PubMed  Google Scholar 

  • Breen, L. J., Green, M. J., Roarty, L., & Saggers, S. (2008). Toward embedding wellness approaches to health and disability in the policies and practices of allied health providers. Journal of Allied Health, 37(3), 173–179.

    PubMed  Google Scholar 

  • Brugha, T. S., & Cragg, D. (1990). The list of threatening experiences: The reliability and validity of a brief life events questionnaire. Acta Psychiatrica Scandinavica, 82(1), 77–81.

    Article  PubMed  Google Scholar 

  • Buist, A., & Udechuku, A. (2007). Maternal depression: Postnatal or perinatal? Medicine Today, 8(11), 38–43.

    Google Scholar 

  • Burton, P., Lethbridge, L., & Phipps, S. (2008). Children with disabilities and chronic conditions and longer-term parental health. The Journal of Socio-Economics, 37(3), 1168–1186.

    Article  Google Scholar 

  • Cairney, J., Veldhuizen, S., Wade, T. J., Kurdyak, P., & Streiner, D. L. (2007). Evaluation of two measures in psychological distress as screeners for depression in the general population. The Canadian Journal of Psychiatry, 52(2), 111–120.

    Google Scholar 

  • Centre for Mental Health Research. (2006). Centre for Mental Health Research: Annual report 2006. Canberra, NSW: ANU College of Medicine & Health Sciences.

    Google Scholar 

  • Churchill, S. S., Villareale, N. L., Monaghan, T. A., Sharp, V. L., & Kieckhefer, G. M. (2008). Parents of children with special health care needs who have better coping skills have fewer depressive symptoms. Maternal and Child Health Journal, 14(1), 47–57.

    Article  PubMed  Google Scholar 

  • Creswell, J. W. (2005). Educational research: Planning, conducting, and evaluating quantitative and qualitative research (2nd ed.). Upper Saddle River, New Jersey: Merrill Prentice Hall.

    Google Scholar 

  • Daire, A. P., Munyon, M. D., Carlson, R. G., Kimemia, M., & Mitcham, M. (2011). Examining distress of parents of children with and without special needs. Journal of Mental Health Counseling, 33(2), 177–187.

    Google Scholar 

  • Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., & Hallberg, L. (2006). Stress and well-being among parents of children with rare diseases: A prospective intervention study. Journal of Advanced Nursing, 53(4), 392–402.

    Article  PubMed  Google Scholar 

  • Dunst, C. J., & Trivette, C. M. (2009). Meta-analytic structural equation modelling on the influences of family-centred care on parent and child psychological health. International Journal of Paediatrics, 13(4), 370–378.

    Google Scholar 

  • Earls, F., & Carlson, M. (2001). The social ecology of child health and well-being. Annual Review of Public Health, 22(1), 143–166.

    Article  PubMed  Google Scholar 

  • 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 and Medicine, 68(1), 89–99.

    Article  PubMed Central  PubMed  Google Scholar 

  • Emerson, E., Hatton, C., Llewellyn, G., Blacker, J., & Graham, H. (2006). Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disabilities. Journal of Intellectual Disability Research, 50(12), 862–873.

    Article  PubMed  Google Scholar 

  • Errazuriz Arellano, P. A., Harvey, E. A., & Thankar, D. A. (2012). A longitudinal study of the relation between depressive symptomatology and parenting practices. Family Relations, 61(2), 271–282.

    Article  Google Scholar 

  • Greco, V., Sloper, P., Webb, R., & Beecham, J. (2007). Key worker services of disabled children: The views of parents. Children and Society, 21(3), 162–174.

    Google Scholar 

  • Green, S. E. (2006). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64(1), 150–163.

    Article  PubMed  Google Scholar 

  • Grimes, D., & Schulz, K. F. (2005). Epidemiology 2: Compared to what? Finding controls for case-control studies. The Lancet, 365, 1429–1433.

    Article  Google Scholar 

  • Gronvik, L. (2007). Defining disability: Effects of disability concepts on research outcomes. International Journal of Social Research Methodology, 12(1), 1–19.

    Article  Google Scholar 

  • Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19, 417–425.

    Article  Google Scholar 

  • Hassall, R., & Rose, J. (2005). Parental cognitions and adaptation to the demands for caring for a child with an intellectual disability: A review of the literature and implications for clinical implications. Behavioural and Cognitive Psychotherapy, 33, 71–88.

    Article  Google Scholar 

  • Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49(6), 405–418.

    Article  PubMed  Google Scholar 

  • Hastings, R. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47(4/5), 231–237.

    Article  PubMed  Google Scholar 

  • Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and expressed emotion: Cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities. American Journal of Mental Retardation, 111(1), 48–61.

    Article  PubMed  Google Scholar 

  • Jackson, A. P., & Scheines, R. (2005). Single mothers’ self-efficacy, parenting in the home environment, and children’s development in a two-wave study. Social Work Research, 29(1), 7–20.

    Article  Google Scholar 

  • Kavanaugh, M., Halterman, J. S., Montes, G., Epstein, M., Hightower, D., & Weitzman, M. (2006). Maternal depressive symptoms are adversely associated with prevention practices and parenting behaviors for preschool children. Ambulatory Paediatrics, 6(1), 32–37.

    Article  Google Scholar 

  • Kemper, K. J., & Babonis, T. R. (1992). Screening for maternal depression in paediatric clinics. American Journal of Diseases of Children, 146(7), 876–878.

    PubMed  Google Scholar 

  • Kessler, R. C., Barker, P. R., Colpe, L. J., Epstein, J. F., Gfroerer, J. C., Hiripi, E., et al. (2003). Screening for serious mental illness in the general population. Archives of General Psychiatry, 60(2), 184–189.

    Article  PubMed  Google Scholar 

  • Kwok, S., & Wong, D. (2000). Mental health of parents with young children in Hong Kong: The roles of parenting stress and parenting self-efficacy. Child and Family Social Work, 5(1), 57–65.

    Article  Google Scholar 

  • Llewellyn, G., Whybrow, S., McConnell, D., Bratel, J., Coles, D., & Wearing, C. (2003). Supporting families: Family well-being and children with disabilities. Sydney: University of Sydney and the Spastic Centre of NSW.

  • Lloyd, C. M., & Rosman, E. (2005). Exploring mental health outcomes for low-income mothers of children with special needs: Implications for policy and practice. Infants and Young Children, 18(3), 186–199.

    Article  Google Scholar 

  • Meirik, O. (2008). Cohort and case-control studies. Geneva: World Health Organization.

    Google Scholar 

  • Mistry, R., Stevens, G. D., Sareen, H., De Vogli, R., & Halfon, N. (2007). Parenting-related stressors and self-reported mental health of mothers with young children. American Journal of Public Health, 97(7), 1261–1268.

    Article  PubMed Central  PubMed  Google Scholar 

  • Mitchell, D. B., & Hauser-Cram, P. (2006). The well-being of mothers of adolescents with developmental disabilities in relation to medical care utilization and satisfaction with health care. Research in Developmental Disabilities, 29(2), 97–112.

    Article  Google Scholar 

  • Muijs, D. (2011). Doing quantitative research in education with SPSS (2nd ed.). Los Angeles, USA: SAGE.

    Google Scholar 

  • Murphy, N. A., Christian, B., Caplin, D. S., & Young, P. C. (2006). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187.

    Google Scholar 

  • Murray, S. (2007). Families’ care of their children with severe disabilities in Australia. Community, Work & Family, 10(2), 215–230.

    Article  Google Scholar 

  • Murray, C., Kelly-Soderholm, E. L., & Murray, T. L. (2007). Strengths, challenges, and relational processes in families of children with congenital upper limb differences: A qualitative study. Families, Systems, and Health, 20(3), 276–292.

    Article  Google Scholar 

  • National Centre for Education Statistics. (1999). National household education survey. Washington, DC: Institute for Education Sciences, US Department of Education.

    Google Scholar 

  • National Disability Services WA. (2007). Children and young people with a disability in Western Australia (No. www.nds.org.au/asset/view_document/979316602).

  • Neece, C. L., Green, S. A., & Baker, B. L. (2012). Parenting stress and child behavior problems: A transactional relationship across time. American Journal of Intellectual and Developmental Disabilities, 117(1), 48–66.

    Article  Google Scholar 

  • Norman, G. (2010). Likert scales, levels of measurement and the “laws” of statistics. Advances in Health Science Education, 15(5), 625–632. doi:10.1007/s10459-010-9222-y.

    Article  Google Scholar 

  • Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31(1), 1–12.

    Article  Google Scholar 

  • Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual Disability Research, 52(12), 1102–1113.

    Article  PubMed  Google Scholar 

  • Ones, K., Yelmaz, E., Cetinkaya, B., & Caglar, N. (2005). Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). The American Society of Neurorehabilitation, 19(3), 232–237.

    Google Scholar 

  • Organization for Economic Cooperation and Development (OECD). (2006). Starting strong II: Early childhood education and care. Paris: OECD Directorate for Education.

    Google Scholar 

  • Press, F., Sumsion, J., & Wong, S. (2011). Integrated early years provision in Australia. Bathurst: Charles Sturt University.

    Google Scholar 

  • Prior, M., Sanson, A., Smart, S., & Oberklaid, F. (2000). Pathways from infancy to adolescence: Australian Temperament Project 1983–2000. Canberra, Australian Capital Territory: Australian Institute of Family Studies (AIFS).

    Google Scholar 

  • Sanders, M. R., & Woolley, M. L. (2005). The relationship between maternal self-efficacy and parenting practices: Implications for parent training. Child: Care, Health and Development, 31(1), 65–73.

    Google Scholar 

  • Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–933.

    Article  PubMed  Google Scholar 

  • Skok, A., Harvey, D., & Reddihough, D. (2006). Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual and Developmental Disability, 31(1), 53–57.

    Article  PubMed  Google Scholar 

  • Sloper, P., Greco, V., Beechham, J., & Webb, R. (2006). Key worker services for disabled children: What characteristics of services lead to better outcomes for children and families? Child: Care, Health and Development, 32(2), 147–157.

    Google Scholar 

  • Voydanoff, P., & Donnelly, B. W. (1998). Parents’ risk and protective factors as predictors of parental well-being and behavior. [Research]. Journal of Marriage and the Family, 60(2), 344.

    Article  Google Scholar 

  • Wade, C., Giallo, R., & Cooklin, A. (2012). Maternal fatigue and depression: Identifying vulnerability and relationship to early parenting practices. Advances in Mental Health, 10(3), 277–291.

    Article  Google Scholar 

  • Ware, J. E., Nelson, E. C., Sherbourne, C. D., & Stewart, A. L. (1992). Preliminary tests of a 6-item general health survey: A patient application. In J. E. Ware & A. L. Steward (Eds.), Measuring functioning and wellbeing: The medical outcomes study approach (pp. 291–308). Durham, DC: Duke University Press.

    Google Scholar 

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Correspondence to Julie A. Dillon-Wallace.

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Dillon-Wallace, J.A., McDonagh, S.H. & Fordham, L.A. How Stable is the Well-Being of Australian Mothers Who Care for Young Children with Special Health Care Needs?. J Child Fam Stud 23, 1215–1226 (2014). https://doi.org/10.1007/s10826-013-9782-6

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  • DOI: https://doi.org/10.1007/s10826-013-9782-6

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