Top

Gepubliceerd in:

07-07-2015 | Original Paper

Sustainable Family Care for Children with Disabilities

Auteurs: David McConnell, Amber Savage, Rhonda Breitkreuz, Dick Sobsey

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 2/2016

Abstract

The majority of parents want to continue caring for their sons and daughters with disabilities at home, and they are expected and actively encouraged to do so. Notwithstanding, and for reasons that are not well understood, a substantial number of parents seek to place their disabled son or daughter out-of-home. The aim of this study was to investigate the attitudes of parent-carers in Alberta, Canada, toward out-of-home placement. The primary objective was to identify factors that may explain why some families, and not others, seriously consider out-of-home placement as an option for their child. This knowledge is vital for developing social care policies and programs that support parents and promote sustainable family care for children with disabilities. A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the family life survey, which incorporated measures of child and family characteristics, sustainability of the daily routine, and out-of-home placement propensity. Results suggest that family placement propensity is inversely associated with the sustainability of the daily routine. Sustainability of the daily routine is, in turn, more strongly associated with social-ecological resources, including parental control-over-work and the adequacy of child care options, than with child characteristics, including activity limitations and behaviour problems. If families have the social-ecological resources they need to create and maintain a daily routine that is congruent with their values and goals, and with the needs, interests and competences of family members, then they are unlikely to give out-of-home placement any serious consideration.

vorige artikel Behavioral and Psychophysiological Effects of a Yoga Intervention on High-Risk Adolescents: A Randomized Control Trial

volgende artikel Perspectives on Engagement Barriers and Alternative Delivery Formats from Non-completers of a Community-Run Parenting Program

Alleen toegankelijk voor geautoriseerde gebruikers

Arbuckle, J. L. (2010). IBM SPSS ^® Amos™ 19 user’s guide. Crawfordville, FL: Amos Development Corporation.

Azaiza, F., Rimmerman, A., Araten-Bergman, T., & Naon, D. (2006). Consideration of out-of-home placement among Israeli Jewish and Arab parents of children with disabilities. International Journal of Rehabilitation Research, 29(2), 113–116.PubMedCrossRef

Barrera, M., Caples, H., & Tein, J. Y. (2001). The psychological sense of economic hardship: Measurement models, validity, and cross-ethnic equivalence for urban families. American Journal of Community Psychology, 29(3), 493–517.PubMedCrossRef

Bernheimer, L. P., Weisner, T. S., Lowe, E. D., & Taylor, S. J. (2003). Impacts of children with troubles on working poor families: Mixed-method and experimental evidence. Mental Retardation, 41(6), 403–419.PubMedCrossRef

Blacher, J. (1990). Assessing placement tendency in families with children who have severe handicaps. Research in Developmental Disabilities, 11(4), 341–351.CrossRef

Blacher, J., & Baker, B. L. (1994). Out-of-home placement for children with retardation: Family decision making and satisfaction. Family Relations, 43(1), 10–15.CrossRef

Blacher, J., & Hanneman, R. (1993). Out-of-home placement of children and adolescents with severe handicaps: Behavioral intentions and behavior. Research in Developmental Disabilities, 14(2), 145–160.PubMedCrossRef

Blacher, J. B., Hanneman, R. A., & Rousey, A. B. (1992). Out-of-home placement of children with severe handicaps: A comparison of approaches. American Journal on Mental Retardation, 96(6), 607–616.PubMed

Blacher, J., & Hatton, C. (2001). Current perspectives on family research in mental retardation. Current Opinion in Psychiatry, 14(5), 477–482.CrossRef

Booth-LaForce, C., & Kelly, J. F. (2004). Childcare patterns and issues for families of preschool children with disabilities. Infants and Young Children, 17(1), 5–16.CrossRef

Bottuck, S., & Winsberg, B. G. (1991). Effects of respite on mothers of school-age and adult children with severe disabilities. Mental Retardation, 29(1), 43–47.

Brevik, J. I., & Dalgard, O. (1996). The Health Profile Inventory. Oslo, Norway: University of Oslo.

Bromley, B., & Blacher, J. (1989). Factors delaying out-of-home placement of children with severe handicaps. American Journal of Mental Retardation, 94(3), 284–291.PubMed

Bromley, B., & Blacher, J. (1991). Parental reasons for out-of-home placement of children with severe handicaps. Mental Retardation, 29(5), 273–280.

Bruns, D. A. (2000). Leaving home at an early age: Parents’ decisions about out-of-home placement for young children with complex medical needs. Mental Retardation, 38(1), 50–60.PubMedCrossRef

Cohen, S., & Warren, R. E. (1985). Respite care: Principles, programs, and policies. Austin, TX: PRO-ED.

Cohen, S., & Williamson, G. (1988). Perceived stress in a probability sample of the United States. In S. Spacapan & S. Oskamp (Eds.), The social psychology of health: Claremont Symposium on applied social psychology (pp. 31–67). Thousand Oaks, CA: Sage Publications.

Cole, D. A., & Meyer, L. H. (1989). Impact of needs and resources on family plans to seek out-of-home placement. American Journal on Mental Retardation, 93(4), 380–387.PubMed

Dillman, D. A. (1978). Mail and telephone surveys (Vol. 3). New York: Wiley.

Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9(2), 171–180.CrossRef

Freedman, R. I., Litchfield, L. C., & Warfield, M. E. (1995). Balancing work and family: Perspectives of parents of children with developmental disabilities. Families in Society, 76(8), 507–514.

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, D. L. MacMillan, D. L. Speece, & S. Vaughn (Eds.), Developmental perspectives on children with high-incidence disabilities (pp. 55–80). Mahwah, NJ: Lawrence Erlbaum Associates Publishers.

Gordon, M., Rosenman, L., & Cuskelly, M. (2007). Constrained labour: Maternal employment when children have disabilities. Journal of Applied Research in Intellectual Disabilities, 20(3), 236–246.CrossRef

Grace, R., Llewellyn, G., Wedgwood, N., Fenech, M., & McConnell, D. (2008). Far from ideal everyday experiences of mothers and early childhood professionals negotiating an inclusive early childhood experience in the Australian context. Topics in Early Childhood Special Education, 28(1), 18–30.CrossRef

Hanneman, R., & Blacher, J. (1998). Predicting placement in families who have children with severe handicaps: A longitudinal analysis. American Journal on Mental Retardation, 102(4), 392–408.PubMedCrossRef

Hastings, R. P., & Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338–1349.PubMedCrossRef

Hill, K. M. (2011). The prevalence of youth with disabilities among older youth in out-of-home placement: An analysis of state administrative data. Child Welfare, 91(4), 61–84.

Hostyn, I., & Maes, B. (2007). Parents’ perspectives on grounds for out-of-home placement of young children with a disability. The British Journal of Development Disabilities, 53(105), 131–146.CrossRef

King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24(1), 41–53.CrossRef

Kobe, F. H., Rojahn, J., & Schroeder, S. R. (1991). Predictors of urgency of out-of-home placement needs. Mental Retardation, 29(6), 323–328.PubMed

Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172–183.PubMedCrossRef

Llewellyn, G., Bundy, A., Mayes, R., McConnell, D., Emerson, E., & Brentnall, J. (2010). Development and psychometric properties of the family life interview. Journal of Applied Research in Intellectual Disabilities, 23(1), 52–62.CrossRef

Llewellyn, G., Dunn, P., Fante, M., Turnbull, L., & Grace, R. (1999). Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research, 43(3), 219–233.PubMedCrossRef

Llewellyn, G., McConnell, D., Thompson, K., & Whybrow, S. (2005). Out-of-home Placement of school-age children with disabilities and high support needs. Journal of Applied Research in Intellectual Disabilities, 18(1), 1–6.CrossRef

Marmot, M. G., Stansfeld, S., Patel, C., North, F., Head, J., White, I., et al. (1991). Health inequalities among British civil servants: The Whitehall II study. The Lancet, 337(8754), 1387–1393.CrossRef

McManus, B. M., Carle, A., Acevedo-Garcia, D., Ganz, M., Hauser-Cram, P., & McCormick, M. (2011). Modeling the social determinants of caregiver burden among families of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 116(3), 246–260.PubMedCrossRef

Mirfin-Veitch, B., Bray, A., & Ross, N. (2003). “It was the hardest and most painful decision of my life!”: Seeking permanent out-of-home placement for sons and daughters with intellectual disabilities. Journal of Intellectual and Developmental Disability, 28(2), 99–111.CrossRef

Olsson, M. B. (2008). Understanding individual differences in adaptation in parents of children with intellectual disabilities: A risk and resilience perspective. International Review of Research in Mental Retardation, 36, 281–315.CrossRef

Owen, L., Gordon, M., Frederico, M., & Cooper, B. (2002). Listen to us: Supporting families with children with disabilities: Identifying service responses that impact on the risk of family breakdown. Melbourne, AUS: Victorian Department of Human Services on behalf of National Disability Administrators.

Patching, B., & Watson, B. (1993). Living with children with an intellectual disability: Parents construct their reality. International Journal of Disability, Development and Education, 40(2), 115–131.CrossRef

Perry, A., & Black, A. (2006). A prospective study of out-of-home placement tendency in families of children with autism. Le journal sur les handicaps du développement, (OADD 20th anniversary issue), pp. 47–64.

Raif, R., & Rimmerman, A. (1993). Parental attitudes to out-of-home placement of young children with developmental disabilities. International Journal of Rehabilitation Research, 16(2), 97–106.PubMedCrossRef

Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family. Maternal and Child Health Journal, 12(6), 679–683.PubMedCrossRef

Rimmerman, A., & Duvdevani, I. (1996). Parents of children and adolescents with severe mental retardation: Stress, family resources, normalization, and their application for out-of-home placement. Research in Developmental Disabilities, 17(6), 487–494.PubMedCrossRef

Rousey, A. B., Blacher, J. B., & Hanneman, R. A. (1990). Predictors of out-of-home placement of children with severe handicaps: A cross-sectional analysis. American Journal on Mental Retardation, 94(5), 522–531.PubMed

Schafer, J. L., & Graham, J. W. (2002). Missing data: Our view of the state of the art. Psychological Methods, 7(2), 147–177.PubMedCrossRef

Schermelleh-Engel, K., Moosbrugger, H., & Müller, H. (2003). Evaluating the fit of structural equation models: Tests of significance and descriptive goodness-of-fit measures. Methods of psychological research online, 8(2), 23–74.

Schreiber, J. B., Nora, A., Stage, F. K., Barlow, E. A., & King, J. (2006). Reporting structural equation modeling and confirmatory factor analysis results: A review. The Journal of Educational Research, 99(6), 323–338.CrossRef

Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106(3), 265–286.PubMedCrossRef

Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M., Emerson, E., et al. (2007). Short form of the developmental behavior checklist. American Journal on Mental Retardation, 112(1), 31–39.PubMedPubMedCentralCrossRef

Tausig, M. (1985). Factors in family decision-making about placement for developmentally disabled individuals. American Journal of Mental Deficiency, 89(4), 352–361.PubMed

Voysey Paun, M. (2006). A constant burden: The reconstitution of family life. Burlington, VT: Ashgate Publishing.

Warfield, M. E. (2001). Employment, parenting, and wellbeing among mothers of children with disabilities. Mental Retardation, 39(4), 297–309.PubMedCrossRef

Weisner, T. S. (2009). Well-being and sustainability of the daily routine of life. In G. Mathews & C. Izquierdo (Eds.), Pursuits of happiness: Well-being in anthropological perspective (pp. 228–247). New York, NY: Berghahn Press.

Weisner, T. S., Matheson, C., Coots, J., & Bernheimer, L. P. (2005). Sustainability of daily routines as a family outcome. In A. E. Maynard & M. I. Martini (Eds.), Learning in cultural context: Family, peers, and school (pp. 41–73). New York, NY: Kluwer Academic/Plenum Publishers.CrossRef

Titel: Sustainable Family Care for Children with Disabilities
Auteurs: David McConnell
Amber Savage
Rhonda Breitkreuz
Dick Sobsey
Publicatiedatum: 07-07-2015
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 2/2016
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-015-0245-0

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 2/2016

Impact of a Father Figure’s Presence in the Household on Children’s Psychiatric Diagnoses and Functioning in Families at High Risk for Depression

Major Life Events as Predictors of Loneliness in Adolescence

An Adverse Family Environment During Adolescence Predicts Marijuana Use and Antisocial Personality Disorder in Adulthood

The Relation Between Fears and Anxiety in Children with Specific Phobia and Parental Fears and Anxiety

Parenting Dimensions and Internalizing Difficulties in Italian and U.S. Emerging Adults: The Intervening Role of Autonomy and Relatedness

Effects of a Workplace Intervention on Parent–Child Relationships