Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

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

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.

vorige artikel Reduced Pseudoneglect for Physical Space, but not Mental Representations of Space, for Adults with Autistic Traits

volgende artikel Atypical Gaze Cueing Pattern in a Complex Environment in Individuals with ASD

Ajuwon, P. M., & Brown, I. (2012). Family quality of life in Nigeria. Journal of Intellectual Disability Research†¯, 56(1), 61–70. 10.1111/j.1365-2788.2011.01487.x.

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

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.

Brown, R. I., MacAdam–Crisp, J., Wang, M., & Iarocci, G. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238–245. 10.1111/j.1741-1130.2006.00085.x.

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.

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.

De Vries, P. J. (2016). Thinking globally to meet local needs. Current Opinion in Neurology, 29(2), 130–136. 10.1097/WCO.0000000000000297.

Department of Social Development. (2012). White paper on families in South Africa. Department of Social Development.

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., Pineles, L., & Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28–35. 10.1111/j.1741-1130.2011.00284.x.

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.

Field, A. (2013). Discovering statistics using IBM SPSS statistics (4th edn.). London: SAGE Publications Inc.

Fleisch, B., Shindler, J., & Perry, H. (2012). Who is out of school? Evidence from the statistics south africa community survey. International Journal of Educational Development, 32(4), 529–536. 10.1016/j.ijedudev.2010.05.002.

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. (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.

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.

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.

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.

Harlow, L. L. (2014). The essence of multivariate thinking. Basic themes and methods (2nd ed.). New York: Routledge.

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.

Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(11), 1069–1083. 10.1111/j.1741-3737.2006.00314.x.

Hu, X., Wang, M., & Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research†¯, 56(1), 30–44. 10.1111/j.1365-2788.2011.01391.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.

Jackson, C. W., Wegner, J. R., & Turnbull, A. P. (2010). Family quality of life following early identification of deafness. Language, Speech and Hearing Services in Schools, 41(4), 194–206. 10.1044/0161-1461(2009/07-0093).

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.

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.

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.

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.

McArthur, M., & Faragher, R. (2014). Children in families with complex needs. International Public Health Journal, 6(2), 199–211.

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.

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. 10.1177/154079691303800403.

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.

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.

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.

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.

Samuel, P. S., Rillotta, F., & Brown, I. (2012). Review: The development of family quality of life concepts and measures. Journal of Intellectual Disability Research†¯, 56(1), 1–16. 10.1111/j.1365-2788.2011.01486.x.

Schalock, R. L., & Verdugo, M. A. (2014). Quality of life as a change agent. International Public Health Journal, 6(2), 105–117. 10.1111/j.1741-1130.2007.00135.x.

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.

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.

Seligman, M., & Darling, R. B. (2007). Ordinary families, special children (3rd edn.). New York: The Guildford Press.

Smith, L., Malcolm-Smith, S., & de Vries, P. J. (2016). Translation and cultural appropriateness of the Autism Diagnostic Observation Schedule-2 in Afrikaans. Autism: The International Journal Of Research And Practice, May, 1–12. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cmedm&AN=27231336&site=ehost-live&scope=site.

Statistics South Africa. (2012). Census 2011 (Revised). Pretoria: Statistics South Africa. Retrieved from http://www.statssa.gov.za/publications/P03014/P030142011.pdf.

Statistics South Africa. (2014). Census 2011: Profile of Persons with Disability in South Africa. Pretoria: Statistics South Africa. Retrieved from http://beta2.statssa.gov.za/publications/Report-03-01-59/Report-03-01-592011.pdf.

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. 10.1080/10349120701488848.

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.

Tint, A., & Weiss, J. A. (2015). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism. 10.1177/1362361315580442.

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.

Verdugo, M. A., Córdoba, L., & Gómez, J. (2005). Spanish adaptation and validation of the family quality of life survey. Journal of Intellectual Disability Research†¯, 49(10), 794–798. 10.1111/j.1365-2788.2005.00754.x.

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. 10.1080/10522150902874842.

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., 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.

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., Turnbull, A., & Summers, J. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31. 10.1111/j.1741-1130.2008.00199.x.

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., 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.

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

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 7/2017

Brief Report: Examining the Association of Autism and Adverse Childhood Experiences in the National Survey of Children’s Health: The Important Role of Income and Co-occurring Mental Health Conditions

Erratum to: Measuring Theory of Mind in Adults with Autism Spectrum Disorder

Self-Report and Brain Indicators of Impaired Emotion Regulation in the Broad Autism Spectrum

Using Time Perception to Explore Implicit Sensitivity to Emotional Stimuli in Autism Spectrum Disorder

The Effects of Early Language on Age at Diagnosis and Functioning at School Age in Children with Autism Spectrum Disorder

Can Children with Autism Spectrum Disorders Learn New Vocabulary From Linguistic Context?