Skip to main content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Journal of Autism and Developmental Disorders 7/2017

03-04-2017 | Original Paper

Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder

Auteurs: Liezl Schlebusch, Shakila Dada, Alecia E. Samuels

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 7/2017

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 article describes the family quality of life among families who are raising a young child with autism spectrum disorder. Survey research was conducted with 180 families of children with autism spectrum disorder who were receiving disability-related services in the Gauteng province of South Africa. The principle measure used was the Beach Center Family Quality of Life Scale to assess five subdomains: family interaction, parenting, emotional well-being, material/physical well-being, and disability-related support. Results indicated that families felt the most satisfied with disability-related support and the least satisfied with the family’s emotional well-being. Family income, family type, and the severity level of autism were significantly associated with how satisfied families felt about their quality of life.
Literatuur
go back to reference Anderson, D., Dumont, S., Jacobs, P., & Azzaria, L. (2007). The personal costs of caring for a child with a disability: A review of the literature. Public Health Reports, 122(1), 3–16. PubMedPubMedCentral Anderson, D., Dumont, S., Jacobs, P., & Azzaria, L. (2007). The personal costs of caring for a child with a disability: A review of the literature. Public Health Reports, 122(1), 3–16. PubMedPubMedCentral
go back to reference Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., & Summers, J. A. (2011). Family quality of life: Adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research†¯, 55(12), 1151–1163. 10.​1111/​j.​1365-2788.​2010.​01350.​x. Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., & Summers, J. A. (2011). Family quality of life: Adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research†¯, 55(12), 1151–1163. 10.​1111/​j.​1365-2788.​2010.​01350.​x.
go back to reference Chambers, N. J., Wetherby, A. M., Stronach, S. T., Njongwe, N., Kauchali, S., & Grinker, R. R. (2016). Early detection of autism spectrum disorder in young isiZulu-speaking children in South Africa. Autism, 10.​1177/​1362361316651196​. Chambers, N. J., Wetherby, A. M., Stronach, S. T., Njongwe, N., Kauchali, S., & Grinker, R. R. (2016). Early detection of autism spectrum disorder in young isiZulu-speaking children in South Africa. Autism, 10.​1177/​1362361316651196​.
go back to reference Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213–222. 10.​1177/​1362361312472261​. Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213–222. 10.​1177/​1362361312472261​.
go back to reference Department of Social Development. (2012). White paper on families in South Africa. Department of Social Development. Department of Social Development. (2012). White paper on families in South Africa. Department of Social Development.
go back to reference Eskow, K., Chasson, G. S., & Summers, J. A. (2015). A cross-sectional cohort study of a large, statewide medicaid home and community-based services autism qaiver program. Journal of Autism & Developmental Disorders, 45, 626–635. 10.​1007/​s10803-014-2217-4. Eskow, K., Chasson, G. S., & Summers, J. A. (2015). A cross-sectional cohort study of a large, statewide medicaid home and community-based services autism qaiver program. Journal of Autism & Developmental Disorders, 45, 626–635. 10.​1007/​s10803-014-2217-4.
go back to reference Ferrer, F., Vilaseca, R., & Olmos, J. G. (2016). Positive perceptions and perceived control in families with children with intellectual disabilities: relationship to family quality of life. Quality & Quantity, February, 1–16. 10.​1007/​s11135-016-0318-1. Ferrer, F., Vilaseca, R., & Olmos, J. G. (2016). Positive perceptions and perceived control in families with children with intellectual disabilities: relationship to family quality of life. Quality & Quantity, February, 1–16. 10.​1007/​s11135-016-0318-1.
go back to reference Field, A. (2013). Discovering statistics using IBM SPSS statistics (4th edn.). London: SAGE Publications Inc. Field, A. (2013). Discovering statistics using IBM SPSS statistics (4th edn.). London: SAGE Publications Inc.
go back to reference Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33(6), 2177–2192. 10.​1016/​j.​ridd.​2012.​06.​014. Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33(6), 2177–2192. 10.​1016/​j.​ridd.​2012.​06.​014.
go back to reference Gardiner, E., & Iarocci, G. (2015). Family quality of life and ASD: The role of child adaptive functioning and behavior problems. Autism Research, 8(2), 199–213. 10.​1002/​aur.​1442. Gardiner, E., & Iarocci, G. (2015). Family quality of life and ASD: The role of child adaptive functioning and behavior problems. Autism Research, 8(2), 199–213. 10.​1002/​aur.​1442.
go back to reference Gine, C., Gracia, M., Vilaseca, R., Beltran, F. S., Balcells-Balcells, A., Montala, M. D., Mestre, J. M. M. (2015). Family quality of life for people with intellectual disabilities in Catalonia. Journal of Policy and Practice in Intellectual Disabilities, 12(4), 244–254. 10.​1111/​jppi.​12134. Gine, C., Gracia, M., Vilaseca, R., Beltran, F. S., Balcells-Balcells, A., Montala, M. D., Mestre, J. M. M. (2015). Family quality of life for people with intellectual disabilities in Catalonia. Journal of Policy and Practice in Intellectual Disabilities, 12(4), 244–254. 10.​1111/​jppi.​12134.
go back to reference Grinker, R. R., Chambers, N., Njongwe, N., Lagman, A. E., Whitney, G., Stronach, S., Wetherby, A. M. (2012). “Communities” in community engagement: Lessons learned from autism research in South Africa and South Korea. Autism Research, 5(3), 201–210. 10.​1002/​aur.​1229. Grinker, R. R., Chambers, N., Njongwe, N., Lagman, A. E., Whitney, G., Stronach, S., Wetherby, A. M. (2012). “Communities” in community engagement: Lessons learned from autism research in South Africa and South Korea. Autism Research, 5(3), 201–210. 10.​1002/​aur.​1229.
go back to reference Halfon, N., Houtrow, A., Larson, K., & Newacheck, P. W. (2012). The changing landscape of disability in childhood. The Future of Children, 22(1), 13–42. 10.​1353/​foc.​2012.0004. Halfon, N., Houtrow, A., Larson, K., & Newacheck, P. W. (2012). The changing landscape of disability in childhood. The Future of Children, 22(1), 13–42. 10.​1353/​foc.​2012.0004.
go back to reference Harlow, L. L. (2014). The essence of multivariate thinking. Basic themes and methods (2nd ed.). New York: Routledge. Harlow, L. L. (2014). The essence of multivariate thinking. Basic themes and methods (2nd ed.). New York: Routledge.
go back to reference Hastings, R. P. (2016). Do Children With Intellectual and Developmental Disabilities Have a Negative Impact on Other Family Members? The Case for Rejecting a Negative Narrative. In R. M. Hodapp & D. J. Fidler (Eds.), International Review of Research in Developmental Disabilities: Fifty years of Research in Intellectual and Developmental Disabilities (pp. 165–194). Amsterdam: Elsevier. Hastings, R. P. (2016). Do Children With Intellectual and Developmental Disabilities Have a Negative Impact on Other Family Members? The Case for Rejecting a Negative Narrative. In R. M. Hodapp & D. J. Fidler (Eds.), International Review of Research in Developmental Disabilities: Fifty years of Research in Intellectual and Developmental Disabilities (pp. 165–194). Amsterdam: Elsevier.
go back to reference Isaacs, B. J., Brown, I., Brown, R. I., Baum, N., Myerscough, T., Neikrug, S., … Wang, M. (2007). The international family quality of life project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177–185. 10.​1111/​j.​1741-1130.​2007.​00116.​x. Isaacs, B. J., Brown, I., Brown, R. I., Baum, N., Myerscough, T., Neikrug, S., … Wang, M. (2007). The international family quality of life project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177–185. 10.​1111/​j.​1741-1130.​2007.​00116.​x.
go back to reference Lee, L.-C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. 10.​1007/​s10803-007-0491-0. Lee, L.-C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. 10.​1007/​s10803-007-0491-0.
go back to reference Malcolm-Smith, S., Hoogenhout, M., Ing, N., Thomas, K. G., & De Vries, P. (2013). Autism spectrum disorders—Global challenges and local opportunities. Journal of Child & Adolescent Mental Health, 25(1), 1–5. 10.​2989/​17280583.​2013.​767804. Malcolm-Smith, S., Hoogenhout, M., Ing, N., Thomas, K. G., & De Vries, P. (2013). Autism spectrum disorders—Global challenges and local opportunities. Journal of Child & Adolescent Mental Health, 25(1), 1–5. 10.​2989/​17280583.​2013.​767804.
go back to reference Mas, J. M., Baqués, N., Balcells-Balcells, A., Dalmau, M., Giné, C., Gràcia, M., & Vilaseca, R. (2016). Family quality of life for families in early intervention in Spain. Journal of Early Intervention, 38(1), 59–74. 10.​1177/​1053815116636885​. Mas, J. M., Baqués, N., Balcells-Balcells, A., Dalmau, M., Giné, C., Gràcia, M., & Vilaseca, R. (2016). Family quality of life for families in early intervention in Spain. Journal of Early Intervention, 38(1), 59–74. 10.​1177/​1053815116636885​.
go back to reference Maul, C. A., & Singer, G. H. S. (2009). “Just Good Different Things” Specific accommodations families make to positively adapt to their children with developmental disabilities. Topics in Early Childhood Special Education, 29(3), 155–170. 10.​1177/​0271121408328516​. Maul, C. A., & Singer, G. H. S. (2009). “Just Good Different Things” Specific accommodations families make to positively adapt to their children with developmental disabilities. Topics in Early Childhood Special Education, 29(3), 155–170. 10.​1177/​0271121408328516​.
go back to reference McArthur, M., & Faragher, R. (2014). Children in families with complex needs. International Public Health Journal, 6(2), 199–211. McArthur, M., & Faragher, R. (2014). Children in families with complex needs. International Public Health Journal, 6(2), 199–211.
go back to reference McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the Double ABCX Model. Journal of Autism and Developmental Disorders, 44(12), 3101–3118. 10.​1007/​s10803-014-2178-7. McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the Double ABCX Model. Journal of Autism and Developmental Disorders, 44(12), 3101–3118. 10.​1007/​s10803-014-2178-7.
go back to reference Meral, B. F., Cavkaytar, A., Turnbull, A. P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38(4), 233–246. 10.​1177/​1540796913038004​03. Meral, B. F., Cavkaytar, A., Turnbull, A. P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38(4), 233–246. 10.​1177/​1540796913038004​03.
go back to reference 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. 10.​1111/​j.​1365-2788.​2008.​01081.​x. 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. 10.​1111/​j.​1365-2788.​2008.​01081.​x.
go back to reference Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research†¯, 47(4/5), 367–384. 10.​1046/​j.​1365-2788.​2003.​00497.​x. Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research†¯, 47(4/5), 367–384. 10.​1046/​j.​1365-2788.​2003.​00497.​x.
go back to reference Pozo, P., Sarriá, E., & Brioso, A. (2013). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: a double ABCX model. Journal of Intellectual Disability Research†¯, 58(5), 442–458. 10.​1111/​jir.​12042. Pozo, P., Sarriá, E., & Brioso, A. (2013). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: a double ABCX model. Journal of Intellectual Disability Research†¯, 58(5), 442–458. 10.​1111/​jir.​12042.
go back to reference Proudlock, P. (2014). South Africa’s progress in realising children’s rights: A law review. Cape Town: Children’s Institute, University of Cape Town & Save the Children South Africa. Proudlock, P. (2014). South Africa’s progress in realising children’s rights: A law review. Cape Town: Children’s Institute, University of Cape Town & Save the Children South Africa.
go back to reference Schertz, M., Karni-Visel, Y., Tamir, A., Genizi, J., & Roth, D. (2016). Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors. Research in Developmental Disabilities, 53– 54, 95–106. 10.​1016/​j.​ridd.​2015.​11.​028. Schertz, M., Karni-Visel, Y., Tamir, A., Genizi, J., & Roth, D. (2016). Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors. Research in Developmental Disabilities, 5354, 95–106. 10.​1016/​j.​ridd.​2015.​11.​028.
go back to reference Schlebusch, L., Samuels, A. E., & Dada, S. (2016). South African families raising children with autism spectrum disorders: relationship between family routines, cognitive appraisal and family quality of life. Journal of Intellectual Disability Research†¯, 60(5), 412–423. 10.​1111/​jir.​12292. Schlebusch, L., Samuels, A. E., & Dada, S. (2016). South African families raising children with autism spectrum disorders: relationship between family routines, cognitive appraisal and family quality of life. Journal of Intellectual Disability Research†¯, 60(5), 412–423. 10.​1111/​jir.​12292.
go back to reference Seligman, M., & Darling, R. B. (2007). Ordinary families, special children (3rd edn.). New York: The Guildford Press. Seligman, M., & Darling, R. B. (2007). Ordinary families, special children (3rd edn.). New York: The Guildford Press.
go back to reference Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D. J., Kupzyk, K. (2007). Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54(3), 319–338. 10.​1080/​1034912070148884​8. Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D. J., Kupzyk, K. (2007). Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54(3), 319–338. 10.​1080/​1034912070148884​8.
go back to reference Tait, K., Fung, F., Hu, A., Sweller, N., & Wang, W. (2016). Understanding Hong Kong Chinese families’ experiences of an Autism/ASD diagnosis. Journal of Autism and Developmental Disorders, 46(4), 1164–1183. 10.​1007/​s10803-015-2650-z. Tait, K., Fung, F., Hu, A., Sweller, N., & Wang, W. (2016). Understanding Hong Kong Chinese families’ experiences of an Autism/ASD diagnosis. Journal of Autism and Developmental Disorders, 46(4), 1164–1183. 10.​1007/​s10803-015-2650-z.
go back to reference Van Biljon, S., Kritzinger, A., & Geertsema, S. (2015). A retrospective case report on demographic changes of learners at a school for children with autism spectrum disorders in the Gauteng Province. South African Journal of Childhood Education, 5(1), 42–61. Van Biljon, S., Kritzinger, A., & Geertsema, S. (2015). A retrospective case report on demographic changes of learners at a school for children with autism spectrum disorders in the Gauteng Province. South African Journal of Childhood Education, 5(1), 42–61.
go back to reference Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167. 10.​1080/​1052215090287484​2. Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167. 10.​1080/​1052215090287484​2.
go back to reference Wang, M., Summers, J. A., Little, T., Turnbull, A., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research†¯, 50(12), 977–988. 10.​1111/​j.​1365-2788.​2006.​00932.​x. Wang, M., Summers, J. A., Little, T., Turnbull, A., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research†¯, 50(12), 977–988. 10.​1111/​j.​1365-2788.​2006.​00932.​x.
go back to reference Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D. J., Mannan, H., & Turnbull, R. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities, 29(2), 82–94. 10.​2511/​rpsd.​29.​2.​82. Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D. J., Mannan, H., & Turnbull, R. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities, 29(2), 82–94. 10.​2511/​rpsd.​29.​2.​82.
go back to reference Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In Enhancing the quality of life of people with intellectual disabilities (Social Ind, pp. 241–276). Springer Science and Business Media. 10.​1007/​978-90-481-9650-0_​15. Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In Enhancing the quality of life of people with intellectual disabilities (Social Ind, pp. 241–276). Springer Science and Business Media. 10.​1007/​978-90-481-9650-0_​15.
go back to reference Zuna, N. I., Brown, I., & Brown, R. I. (2014). Family quality of life in intellectual and developmental disabilities†¯: A support-based framework. International Public Health Journal, 6(2), 161–184. Zuna, N. I., Brown, I., & Brown, R. I. (2014). Family quality of life in intellectual and developmental disabilities†¯: A support-based framework. International Public Health Journal, 6(2), 161–184.
go back to reference Zuna, N. I., Selig, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor analysis of a family quality of life scale for families of kindergarten children without disabilities. Journal of Early Intervention, 31(2), 111–125. 10.​1177/​1053815108330369​. Zuna, N. I., Selig, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor analysis of a family quality of life scale for families of kindergarten children without disabilities. Journal of Early Intervention, 31(2), 111–125. 10.​1177/​1053815108330369​.
Metagegevens
Titel
Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder
Auteurs
Liezl Schlebusch
Shakila Dada
Alecia E. Samuels
Publicatiedatum
03-04-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 7/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-017-3102-8

Andere artikelen Uitgave 7/2017

Journal of Autism and Developmental Disorders 7/2017 Naar de uitgave