Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 11/2015

04-07-2015 | Original Paper

Support Needs of Families Living with Children with Autism Spectrum Disorder

Auteurs: Billie Margaret Jean Searing, Fiona Graham, Rebecca Grainger

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 11/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

This study examined the perceived availability and helpfulness of supports used by caregivers of children with Autism Spectrum Disorder in New Zealand, particularly for caregivers who are Māori, and who live rurally. Caregivers (N = 92) completed the Family Support Scale with comparisons analysed using t tests. Free text comments were invited and analysed using a general inductive approach. More support was perceived as available by Non-Māori than Māori p = 0.03, 95 % CI (0.21, 3.88). Spouses were rated as the most helpful support. Professional helpers were rated as ‘somewhat helpful’. Helpful support emphasised caring, knowledge and accessibility. Ethnic differences in perceptions of support endorse calls for culturally tailored supports. Informal supports are highly valued however professional supports require development to better meet caregiver needs.
Literatuur
go back to reference Alliston, L. (2007). Principles and practices in Early Intervention: A literature review for the Ministry of Health. Wellington, New Zealand: Ministry of Health. Alliston, L. (2007). Principles and practices in Early Intervention: A literature review for the Ministry of Health. Wellington, New Zealand: Ministry of Health.
go back to reference Arcia, E., Keyes, L., Gallagher, J., & Herrick, H. (1993). National portrait of sociodemographic factors associated with underutilization of services: Relevance to early intervention. Journal of Early Intervention, 17(3), 283–297. doi:10.1177/105381519301700306.CrossRef Arcia, E., Keyes, L., Gallagher, J., & Herrick, H. (1993). National portrait of sociodemographic factors associated with underutilization of services: Relevance to early intervention. Journal of Early Intervention, 17(3), 283–297. doi:10.​1177/​1053815193017003​06.CrossRef
go back to reference Autism New Zealand. (2011). Respite care: The views of families and whanau of people with ASD. Autism New Zealand. Autism New Zealand. (2011). Respite care: The views of families and whanau of people with ASD. Autism New Zealand.
go back to reference Benson, P. R. (2012). Network characteristics, perceived social support, and psychological adjustment in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(12), 2597–2610. doi:10.1007/s10803-012-1517-9.CrossRefPubMed Benson, P. R. (2012). Network characteristics, perceived social support, and psychological adjustment in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(12), 2597–2610. doi:10.​1007/​s10803-012-1517-9.CrossRefPubMed
go back to reference Bevan-Brown, J. (2004). Māori perspectives of autism spectrum disorder: Report to the Ministry of Education. Wellington, New Zealand: Ministry of Education. Bevan-Brown, J. (2004). Māori perspectives of autism spectrum disorder: Report to the Ministry of Education. Wellington, New Zealand: Ministry of Education.
go back to reference Bevan-Brown, J. (2010). Messages from parents of children with autism spectrum disorder. Kairanga, 11(2), 16–22. Bevan-Brown, J. (2010). Messages from parents of children with autism spectrum disorder. Kairanga, 11(2), 16–22.
go back to reference Bevan-Brown, J., Bourke, R., Butler, P., Carroll-Lind, J., Kearney, A., & Mentis, M. (2011). Evaluation of the ‘tips for autism’ professional learning and development programme. Wellington, New Zealand: Massey University. Bevan-Brown, J., Bourke, R., Butler, P., Carroll-Lind, J., Kearney, A., & Mentis, M. (2011). Evaluation of the ‘tips for autism’ professional learning and development programme. Wellington, New Zealand: Massey University.
go back to reference Birkin, C., Anderson, A., Moore, D., & Seymour, F. (2004). Evaluating the efficacy of parent-focused interventions for Autism: How do we know what will work? Australian Journal of Early Childhood, 29(3), 42–47. Birkin, C., Anderson, A., Moore, D., & Seymour, F. (2004). Evaluating the efficacy of parent-focused interventions for Autism: How do we know what will work? Australian Journal of Early Childhood, 29(3), 42–47.
go back to reference Cain Spannagel, S. A. (2011). The impact of access to services and symptom severity on parenting stress and stress-related growth in parents of children with Autism. (Doctor of Philosophy), Case Western Reserve University. Cain Spannagel, S. A. (2011). The impact of access to services and symptom severity on parenting stress and stress-related growth in parents of children with Autism. (Doctor of Philosophy), Case Western Reserve University.
go back to reference Crengle, S., Lay-Yee, R., Davis, P., & Pearson, J. (2005). A comparison of Māori and non-Māori patient visits to doctors: The national primary medical care survey (NatMedCa) 2001/2002. Wellington: Ministry of Health. Crengle, S., Lay-Yee, R., Davis, P., & Pearson, J. (2005). A comparison of Māori and non-Māori patient visits to doctors: The national primary medical care survey (NatMedCa) 2001/2002. Wellington: Ministry of Health.
go back to reference Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research. Thousand Oaks, CA: Sage. Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research. Thousand Oaks, CA: Sage.
go back to reference Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200. doi:10.1002/aur.1225.CrossRefPubMed Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200. doi:10.​1002/​aur.​1225.CrossRefPubMed
go back to reference Dunst, C. J., Jenkins, V., & Trivette, C. M. (1984). Family support scale: Reliability and validity. Journal of Individual, Family, and Community Wellness, 1(4), 45–52. Dunst, C. J., Jenkins, V., & Trivette, C. M. (1984). Family support scale: Reliability and validity. Journal of Individual, Family, and Community Wellness, 1(4), 45–52.
go back to reference Dunst, C. J., Trivette, C. M., & Hamby, D. W. (1994). Measuring social support in families with young children with disabilities. In C. J. Dunst, C. M. Trivette, & A. G. Deal (Eds.), Supporting & strengthening families: Methods, strategies and practices (Vol. 1, pp. 152–160). Cambridge: Brookline Books. Dunst, C. J., Trivette, C. M., & Hamby, D. W. (1994). Measuring social support in families with young children with disabilities. In C. J. Dunst, C. M. Trivette, & A. G. Deal (Eds.), Supporting & strengthening families: Methods, strategies and practices (Vol. 1, pp. 152–160). Cambridge: Brookline Books.
go back to reference Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centred helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 370–378. doi:10.1002/mrdd.20176.CrossRefPubMed Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centred helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 370–378. doi:10.​1002/​mrdd.​20176.CrossRefPubMed
go back to reference Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(10), 1274–1284. doi:10.1007/s10803-010-0986-y.CrossRefPubMed Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(10), 1274–1284. doi:10.​1007/​s10803-010-0986-y.CrossRefPubMed
go back to reference Gill, M. J., & Harris, S. L. (1991). Hardiness and social support as predictors of psychological discomfort in mothers of children with autism. Journal of Autism and Developmental Disorders, 21(4), 407–416. doi:10.1007/BF02206867.CrossRefPubMed Gill, M. J., & Harris, S. L. (1991). Hardiness and social support as predictors of psychological discomfort in mothers of children with autism. Journal of Autism and Developmental Disorders, 21(4), 407–416. doi:10.​1007/​BF02206867.CrossRefPubMed
go back to reference Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Cottrill-Becker, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1227. doi:10.1007/s10803-010-1140-6.CrossRefPubMed Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Cottrill-Becker, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1227. doi:10.​1007/​s10803-010-1140-6.CrossRefPubMed
go back to reference Ministries of Health and Education. (2008). New Zealand autism spectrum disorder guideline. New Zealand: Wellington. Ministries of Health and Education. (2008). New Zealand autism spectrum disorder guideline. New Zealand: Wellington.
go back to reference Ministry of Health. (2007). Urban-rural health comparisons: Key results of the 2002/03 New Zealand Health Survey. Wellington, New Zealand: Ministry of Health. Ministry of Health. (2007). Urban-rural health comparisons: Key results of the 2002/03 New Zealand Health Survey. Wellington, New Zealand: Ministry of Health.
go back to reference Ministry of Health. (2012). The health of New Zealand children 2011/2012: Key findings of the New Zealand health survey. Wellington, New Zealand: Ministry of Health. Ministry of Health. (2012). The health of New Zealand children 2011/2012: Key findings of the New Zealand health survey. Wellington, New Zealand: Ministry of Health.
go back to reference Nikora, L., Karapu, R., Hickey, H., & Te Awekotuku, N. (2004). Disabled Māori and disability support options. In University of Waikato & Ministry of Health (Eds.). Nikora, L., Karapu, R., Hickey, H., & Te Awekotuku, N. (2004). Disabled Māori and disability support options. In University of Waikato & Ministry of Health (Eds.).
go back to reference Roberts, J., Prior, M., & Trembath, D. (2006). A review of the research to identify the most effective models of practice in early intervention for children with autism spectrum disorders. Australia: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.CrossRef Roberts, J., Prior, M., & Trembath, D. (2006). A review of the research to identify the most effective models of practice in early intervention for children with autism spectrum disorders. Australia: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.CrossRef
go back to reference Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centred service: A conceptual framework and research review. Physical & Occupational Therapy in Pediatrics, 18(1), 1–20. doi:10.1080/J006v18n01_01. Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centred service: A conceptual framework and research review. Physical & Occupational Therapy in Pediatrics, 18(1), 1–20. doi:10.​1080/​J006v18n01_​01.
go back to reference Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40(5), 620–628. doi:10.1007/s10803-009-0912-3.CrossRefPubMed Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2010). Time demands of caring for children with autism: What are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40(5), 620–628. doi:10.​1007/​s10803-009-0912-3.CrossRefPubMed
go back to reference Searing, B. (2014). Support needs of families living with children with autism spectrum disorder in New Zealand (Unpublished Master’s Degree), University of Otago, Dunedin, New Zealand Searing, B. (2014). Support needs of families living with children with autism spectrum disorder in New Zealand (Unpublished Master’s Degree), University of Otago, Dunedin, New Zealand
go back to reference Statistics New Zealand. (2006). New Zealand: An urban/rural update. New Zealand: Wellington. Statistics New Zealand. (2006). New Zealand: An urban/rural update. New Zealand: Wellington.
go back to reference Statistics New Zealand. (2013). New Zealand in profile 2013: An overview of New Zealand’s people, economy, and environment. Wellington: Statistics New Zealand. Statistics New Zealand. (2013). New Zealand in profile 2013: An overview of New Zealand’s people, economy, and environment. Wellington: Statistics New Zealand.
Metagegevens
Titel
Support Needs of Families Living with Children with Autism Spectrum Disorder
Auteurs
Billie Margaret Jean Searing
Fiona Graham
Rebecca Grainger
Publicatiedatum
04-07-2015
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 11/2015
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-015-2516-4

Andere artikelen Uitgave 11/2015

Journal of Autism and Developmental Disorders 11/2015 Naar de uitgave

SI: Emotion Regulation and Psychiatric Comorbidity in ASD

Neural Mechanisms of Emotion Regulation in Autism Spectrum Disorder