Handling the Psychological Distress of Parents of Children with Autism Spectrum Disorders: Feasibility of Group Work Approach
Keywords:
autism, parent intervention module, psychological distress, group workAbstract
Autism Spectrum Disorders are pervasive developmental disorders affecting many children today. Parenting a child with special needs, such as children with autism, is very taxing, as they need intensive and life-long intervention in diverse areas. This paper is an attempt to assess the need of those parents of children with autism and to develop an intervention programme to take care of the psychosocial issues. The study had two phases. In the first phase 120 parents of children with autism spectrum disorders were interviewed using a semi structured interview schedule and GHQ 28. In the second phase, an intervention module was prepared and implemented with 20 parents. The results show that the mean psychological distress was significantly higher for mothers compared to fathers. The scores on subscales show that mothers have higher level of somatic symptoms, anxiety and insomnia, social dysfunction and depression compared to fathers. The pre and post analysis of the group intervention shows that there is a drop in the level of distress and increase in the awareness on child’s illness in parents after the group intervention. The findings show that addressing parental needs in a group setting can be very effective and beneficial in helping parents reduce their distress levels and hence making them better equipped to look after their child with a disability like autism.
References
Arnold (1978). An explanatory examination of the effects of support groups on the well-being of parents of children with autism: I. General counseling. Journal of Applied Health Behaviour, 1, 16- 22.
Banks, M. H. (1983). Validation of the general health questionnaire in a young community sample. Psychological Medicine, 13, 349-353.
Benson, P. (2006). The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 36 (5), 685-695.
Benson. B. & Dewey, D. (2008). Parental stress and needs in families of children with autism spectrum disorder. International Journal of Disability, Community and Rehabilitation, 7(1), 61-75.
Bistika, V., & Sharpley, C. (2000). Development and testing of the effects of support groups on the well-being of the parents of children with autism: II. Specific stress management techniques. Journal of Applied Health Behaviour, 2, 8- 15.
Bristol., M. (1993) Maternal depressive symptoms in autism: Response to psychoeducational intervention. Rehabilitation Psychology, 38 (1), 3-10.
Bristol, M. M ., Gallagher, J. J., & Scholper, E. (1988). Mothers and fathers of young developmentally disabled and nondisabled boys: Adaptation and spousal support. Developmental Psychology, 24: 441-451.
Centers for Disease Control and Prevention (CDC). Prevalence of Autism Spectrum Disorders-Autism and Developmental Disabilities Monitoring Network, six sites, United States, 2000. MMWR SS 2007; 56(SS-1)(1) Centers for Disease Control and Prevention (CDC). Prevalence of Autism Spectrum Disorders-Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002. MMWR SS 2007; 56(SS-1)(2)
Centers for Disease Control and Prevention. Mental health in the United States: Parental report of diagnosed autism in children aged 4–17 years-United States, 2003–2004. MMWR Morbidity Mortality Weekly Report, 2006;55: 481–48
DeMyer, M. K. (1979). Parents and children in autism. New York: John Wiley and Sons. DeMyer, M. K., & Goldberg, P. (1983). Family needs of the autistic adolescent. In E. Schopler and G. B. Mesibov (Eds.), Autism in Adolescents and Adults. New York: Plenum Press, 225-250.
Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institute of Mental Health, 1999.
Diagnosis and Assessment in Autism. Edited by Eric Schopler and Gary B. Mesibov, Current issues in autism, Series Editors: Eric Schopler and Gary B. Mesibov., 1988, Plenum Press, New york.
Dumas, J. E., Wolf, L.C., & Fisman, S.N. (1991). Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal development. Exceptionality, 2:97–110
Factor, D. C., Perry, A., & Freeman, N. (1990). Brief report-stress, social support and respite care use in families with autistic children. Journal of Autism and Developmental Disorders, 20, 139-146.
Fisman, S., & Wolf, L. (1991). The handicapped child: psychological effects of parental, marital, and sibling relationships. Psychiatric Clinics in North America, 14, pp. 199-217.
Fleischmann, A. (2005). The hero’s story and autism. Autism, 9(3), 299- 316. Fombonne, E. (1998). Epidemiology of autism and related conditions. In F. R. Volkmar (ed). Autism and pervasive developmental disorders. Cambridge, England: Cambridge University Press, 32-63.
Fombonne, E. (1999). The epidemiology of autism: A review. Psychological Medicine, 29, 769-786. Freeman, C., Power, M., & Logan, K (2008). Obsessive compulsive disorder, Handbook of evidence based psychotherapies, John Wiley& Sons Ltd.
Gallagher, J. J., Beckman, P., & Cross, A. H. (1983). Families of handicapped children: Sources of stress and its amelioration. Exceptional children, 50: 10-19.
Giannoulis, K., et al. (2004). The role and value of a paediatric specialist neurodevelopmental diagnostic service: parental perceptions, child and adolescent mental health, 9(2), 65-70. Goldberg, D & Williams, P. (1988). A user’s guide to the GHQ, Berkshire: NFER Nelson.
Grant, G. & Whittell, B. (2000). Differentiated coping strategies in families with children or adults with intellectual disabilities: The relevance of gender, family composition and the life span. Journal of Applied Research in Intellectual Disabilities, 13, 256-275.
Gray, D. (2003) Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56,631-642. Gray, D. E. (1997). High functioning autistic children and the construction of “normal family life”. Social Science and Medicine, 44 (8), 1097-1106.
Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215-222.
Hastings, R. P. & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioural intervention for their young children with autism, Journal of Autism and developmental disorders, 31: 327-336.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism. 9 :377 –391
Henderson, D., & Vanderberg, B. (1992). Factors influencing adjustment in the families of autistic children. Psychological Reports, 71, 167–171.
Higgins, D., Bailey, S., & Pearce, J. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125-137. Holroyd, J. (1974). The questionnaire on resources and stress: An instrument to measure family response to a handicapped member. American Journal of Community Psychology, 2, 92-94. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55: 3-9.
Luther, E., Canham, D., & Cureton, V. (2005). Coping and social support for parents of children with autism. Journal of School Nursing, 21(1), 40- 47.
Marcus, L. M., Wertheimer, A., Clement, S., & Kuhr, R. (1995, July). Support groups for parents of autistic children from preschool to adulthood. McGrath, P. (2006). Psychosocial issues in childhood autism rehabilitation: A review, International Journal of Psychosocial Rehabilitation, 11(1), 29-36.
Meadan, H. H., Ebata, & J. W., Aaron, T. (2010 ) Families with children who have autism spectrum disorders: stress and support.(Report), Exceptional Children, 77.
Mitchell, C. A. (2008). Planning with parents: The use of groups in residential treatment, Social Work with Groups, 5 (4), 31-45.
Moes, D., Koegel , R. L., Schreibman, L., & Loos, L. M. (1992). Stress profiles for mothers and fathers of children with autism. Psychological Reports, 71: 1272–1274.
Murphy, M. (1982). The family with a handicapped child: A review of the literature. Journal of Developmental and Behavioral Pediatrics, 3, 73-81.
Newsome, W. (2000) Parental perceptions during periods of transition: Implications for social workers serving families coping with autism. Journal of Family Social Work, 5(2), 17-31.
Olsson, M., Hwang C. (2001): Depression in mothers and fathers of children with intellectual disability. Journal of International Disability Research, 45: 535-543.
Pakenham, K., Samios, C., & Sofronoff, K. (2005) Adjustment of mothers of children with Asperger Syndrome: An Application of the Double ABCX mode of family adjustment. Autism, 9(2), 191-212.
Perry, et al., (1998). Family Environments and Family Harmony: An exploration across Severity, Age, and Type of DD. Journal on Developmental Disabilities, 11(1), 17-29.
Phelps, L., Grabowski, J. A. (1991). Autism: A Communique for the School Psychologist. School Psychology International, 12(4), 299-314.
Probst, P. (1996). Behinderungsbezogene Gesundheitskognitionen bei Eltern autistischer Kinder: Eine Literaturübersicht (Health cognitions in parents of autistic children: A literature review). Zeitschrift für Klinische Psychologie, Psychiatrie und Psychotherapie, 44, 339-361.
Probst, P. (1998). Child health related cognitions of parents with autistic children: A cross-national exploratory study. In U. P. Gielen & A. L. Communian (Eds.), Family and family therapy in international perspective (pp. 461-483), Trieste: Edizioni LINT (Italy).
Probst, P. (2001). Outcomes of a group parent training in families with autistic children. In R. Malgozata, S. Sebre, S. Miezite, K. A. Laar & G. Gintiliene (Eds.), New Developments in Psychology in the Baltics: Theory and Practice (Proceedings: IV International Baltic Psychology Conference, Riga, Latvia, 6-9 October, 2000, pp. 71-80. Riga: University of Latvia.
Purcell, R. (2005). Association between stalking stalking victimization and psychiatric morbidity in a random community sample. The British Journal of Psychiatry, 187, 416-420.
Quittner, A. L., Espelage, D. L., Opipari, L. C., Carter, B., Eid, N., & Eigen, H. (1998). Role strain in couples with and without a child with a chronic illness: Associations with marital satisfaction, intimacy, and daily mood. Health Psychology, 17(2), 112-124.
Riper, M.V. (2007). Families of children with down syndrome: Responding to “A Change in Plans” with resilience. Journal of Pediatric Nursing, 22(2), 116-128.
Rutter, M. & Schopler, E. (1978). Introduction to neurobiological issues in Autism. In E. Schopler & G. B. Mesibov (Eds), Neurobiological issues in autism, New York: Plenum, 3-11.
Rutter, M., & Eric Taylor (1976) Child and adolescents psychiatry, Fourth Edition, Blackwell Pub. U.K.
Saddler, A. L., Hillman, S. B., & Benjamins, D. (1993). The influence of disabling condition visibility on family functioning. Journal of Pediatric Psychology, 18 (4), 425-439.
Sloper, P., & Turner, S. (1993). Risk and resistance factors in the adaptation of children. Journal of Child psychology and psychiatry, 34: 164-188.
Tarakeshwar, N., & Pargament, K. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16(4), 247-260.
Tonmanil, S., Harris, G. E. & Hawkins, J. (2004).The relationship between behaviors exhibited by children with autism and maternal stress. Journal of intellectual and developmental Disability, 29 (1), 16-26.
Tynes, L., Salins, C., Skiba, W., & Winstead, D. K. (1992), Comprehensive Psychiatry, 33(3),197-201).
Van Noppen, B., Steketee, G., McCorkle, B. H., & Pato, M.(1997). Group and multifamily behavioral treatment for obsessive compulsive disorder: a pilot study. Journal of Anxiety Disorders, 11 (4): 431-446.
Whitaker, P. (2002) Supporting Families of Preschool Children with Autism: What Parents want and what helps, Autism, 6(4); 411-426.
Wig, N. N., Mehta, M. & Sahasi, G. (1985) A study of time utilization and perceived burden of mentally handicapped child in joint and nuclear families. Indian Journal of Social Psychiatry, 1, 251-261.
Wing, L. (1989). The continuum of autistic characteristics. In E. Schopler & G. B. Mesibov (Eds.), Diagnosis and assessment in autism. New York: Plenum Press, 91-110.
Wolf LC, Noh S, Fisman SN, Speechley M. (1989). Psychological effects of parenting stress on parents of autistic children. Journal of Autism and Developmental Disorders, 19, pp. 157-166.
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