The Experiences of Families with Autistic Children with Their Financial Burden

Yıl 2022, Cilt: 33 Sayı: 4, 1027 - 1048, 30.10.2022

Ferhat Toper Yasemin Özkan

https://doi.org/10.33417/tsh.1084779

Öz

Autism is a neurodevelopmental disorder associated with impairments in social ability, social activity, communication, and imagination, and repetitive restricted behavioral patterns. The increase in the global prevalence of autism in recent years has led to an increase in the importance of studies focusing on individuals with autism and their families. Because autism is a developmental disorder that affects not only the individual but also the family and then the immediate environment. Families with autistic children face many difficulties, and perhaps the most important of these difficulties, financial difficulties, are directly related to many difficulties experienced by families. The aim of this study is to understand the experiences of families with children with autism regarding the financial difficulties they face due to diagnosis, treatment, education, therapies and other unaccounted expenses. In this direction, it was designed as a qualitative research with the parents of individuals under the age of 18 who were medically diagnosed with autism. 20 parents and 17 professionals from different professions working in the field of autism participated in the study and in-depth interviews were conducted with them through semi-structured interview forms. The data obtained was analyzed through the MAXQDA 2020 program and explained in a language suitable for the literature and understandable. Families face serious financial difficulties in diagnosis, treatment, education and rehabilitation expenditures. In addition, expenditures related to diet and other health care services wear down families financially.

Anahtar Kelimeler

autism, financial burden, social work, rehabilitation

Otizmli Çocuğa Sahip Ailelerin Finansal Yüklerine İlişkin Deneyimleri

Öz

Otizm, sosyal yetenek, sosyal aktivite, iletişim ve hayal gücündeki bozukluklar ile tekrarlayan kısıtlı davranış kalıplarıyla ilişkili nöro-gelişimsel bir bozukluktur. Son yıllarda otizmin küresel yaygınlığının artması otizmli bireyler ve ailelerini odak alan çalışmaların öneminin artmasına neden olmuştur. Zira otizm sadece bireyi değil başta ailesi daha sonra yakın çevresini etkileyen gelişimsel bir bozukluktur. Otizmli çocuğa sahip aileler birçok zorlukla karşı karşıyadırlar ve bu zorluklardan belki de en önemlisi olan finansal zorluklar ailelerin yaşadığı birçok zorlukla da doğrudan ilişkilidir. Bu çalışmanın amacı otizmli çocuğa sahip ailelerin tan, tedavi, eğitim, terapiler ve diğer hesap dışı harcamalar dolayısıyla karşı karşıya oldukları finansal zorluklara ilişkin deneyimlerini anlamaktır. Bu doğrultuda tıbbi olarak otizm tanısı almış 18 yaş altı bireylerin ebeveynleri ile nitel bir araştırma olarak tasarlanmıştır. Çalışmaya 20 ebeveyn ve otizm alanında çalışan farklı meslek elemanlarından 17 profesyonel katılmış ve kendileri ile yarı yapılandırılmış görüşme formları aracılığıyla derinlemesine görüşmeler gerçekleştirilmiştir. Elde edilen verilen MAXQDA 2020 programı aracılığı ile analiz edilerek literatüre uygun ve anlaşılır bir dille açıklanmıştır. Aileler tanı, tedavi, eğitim ve rehabilitasyon harcamaları konusunda ciddi mali zorluklarla karşı karşıyadır. Bunlara ek olarak diyet ve diğer sağlık hizmetleriyle ilgili harcamalar aileleri finansal açıdan yıpratmaktadır.

Anahtar Kelimeler

otizm, finansal yük, sosyal hizmet, rehabilitasyon

Kaynakça

• Ailing-Moh, T., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 293-303.
• Amendah, D., Grosse, S. D., Peacock, G., & Mandell, D. S. (2011). The economic costs of autism: A review. D. G. Amaral, D. Geschwind, & G. Dawson içinde, Autism Spectrum Disorders (s. 1347-1360). Oxford: Oxford University Press.
• Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet , 210-215.
• Baker, S. M. (2013). Learning About Autism. Global Advances In Health And Medicine, 38-46.
• Benderix, Y., Nordström, B., & Sivberg, B. (2006). Parents’ Experience Of Having A Child With Autism And Learning Disabilities Living İn A Group Home. A Case Study. Autism, 629-641.
• Boyatzis, R. E. (1998). Transforming Qualitative Information: Thematic Analysis and Code Development. USA: Sage Publishing.
• Buescher, A., Cidav, Z., Knapp, M., & Mandall, D. S. (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics, 721-728.
• Bilgiç, A., & Cöngöloğlu, A. (2009). Otizm Spektrum Bozukluklarında Biyolojik Temelli Tamamlayıcı Ve Alternatif Tıp Uygulamaları. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 153-164.
• Blaylock, R. L. (2009). A possible central mechanism in autism spectrum disorders, part 3: the role of excitotoxin food additives and the synergistic effects of other environmental toxins. Alternative Therapies In Health And Medicine, 122-144.
• Coren, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L., & Bernal, P. (2006). A Comparison of Health Care Utilization and Costs of Children With and Without Autism Spectrum Disorders in a Large Group-Model Health Plan. Pediatrics, 1203-1211.
• Creswell, J. W. (1994). Research Design: Qualitative & Quantitative Approaches. Sage Publications Inc.
• Creswell, J. W. (2013). Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. New York: SAGE Publications. Curran, A. L., Sharples, P., White, C., & Knapp, M. (2001). Time costs of caring forchildren with severedisabilities comparedwith caring for childrenwithout disabilities. Developmental Medicine & Child Neurology , 529-533.
• Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural Issues in Autism. Journal of Autism and Developmental Disorders, 211-222.
• Fernstorm, J. D., & Fernstorm, M. H. (2007). Tyrosine, phenylalanine, and catecholamine synthesis and function in the brain. The Journal of Nutrition, 1539-1547.
• Frith, U. (2008). Autism: A Very Short Introduction. Oxford: Oxford University Press.
• Ganz, M. L. (2007). The Lifetime Distribution of the Incremental Societal Costs of Autism. Archives of Pediatrics and Adolescent Medicine, 343-349.
• Gau, S. S.-F., Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J., & Wu, Y.-Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 263-270.
• Gnanasekaran, S., Choueiri, R., Neumeyer, A., Ajari, O., A. S., & Kuhlthau, K. (2015). Impact of employee benefits on families with children with autism spectrum disorders. Autism, 1-7.
• Gupta, V. B. (2007). Comparison of Parenting Stress in Different Developmental Disabilities. Journal of Developmental and Physical Disabilities, 417-425.
• Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The Relative Risk and Timing of Divorce in Families of Children With an Autism Spectrum Disorder. Journal of Family Psychology, 449-457.
• Hayes, S. A., & Watson, S. L. (2013). The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 629-642.
• Horlin, C., M. F., Parsons, R., Albrecht, M. A., & Falkmer, T. (2014). The Cost of Autism Spectrum Disorders. Plos One, 1-11.
• Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 135-162.
• Jarbrink, K. (2007). The economic consequences of autistic spectrum disorder among children in a Swedish municipality. Autism, 453-463.
• Kaya, Ö. (2016). Otizm Spektrum Bozukluğu Olan Bireylerin Değerlendirilmesi. Ş. Y. Özkan, Y. Ergenekon, A. Çolak, & Ö. Kaya içinde, Otizm Spektrum Bozukluğu (s. 59-92). Ankara: Grafiker Yayınları.
• Kayaoğlu, H., & Görür, Ö. (2008). Otistik Çocuklar Naıl Öğrenir? Ankara: Epsos Yayınları.
• Keen, D., Couzens, D., Muspratt, S., & Rodger, S. (2010). The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorders, 229-241.
• Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 317-336.
• Köse, S., Özbaran, B., & Erermiş, S. (2012). Otizm Yelpaze Bozukluklarında Nöropsikolojik Profil. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 103-115.
• Kuckartz, U., & Rädiker, S. (2019). Analyzing Qualitative Data with MAXQDA. USA: Springer.
• Kuhn, R., & Cahn, C. H. (2004). Eugen Bleuler’s Concepts of Psychopathology. History of Psychiatry, 361-366.
• Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic Burden of Childhood Autism Spectrum Disorders. Pediatrics, 520-528.
• 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, 1147-1160.
• Leigh, J. P., & Du, J. (2015). Brief Report: Forecasting the Economic Burden of Autism in 2015 and 2025 in the United States. Journal of Autism and Developmental Disorders, 4135-4139.
• Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health Care Utilization and Expenditures for Children with Autism: Data from U.S. National Samples. Journal of Autism and Developmental Disorders, 871-879.
• Lotter, V. (1966). Epidemiology of Autistic Conditions in Young Children. Social Psychiatry, 124-137.
• Marcus, L. M., Kunce, L. J., & Schopler, E. (2005). Working with Families. F. R. Volkmar, R. Paul, A. Klin, & D. Cohen içinde, Handbook of Autism and Pervasive Developmental Disorders, Assessment, Interventions, and Policy (Volume 2) (s. 1055-1085). New Jersey: John Wiley & Sons, Inc.
• McGrath, P. (2006). Psychosocial Issues in Childhood Autism Rehabilitation: A Review. The International Journal of Psychosocial Rehabilitation, 29-36.
• Midence, K., & O'Neill, M. (1999). The Experience of Parents in the Diagnosis of Autism. Autism, 273-285.
• Montes, G., & Halterman, J. S. (2008). Child Care Problems and Employment Among Families With Preschool-Aged Children With Autism in the United States. Pediatrics, 202-208.
• Morse, J. M. (2016). What is Qualitative Research? Qualitative Health Research, 859-860.
• Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., Levy, S. E., . . . C.Windham, G. (2007). The Epidemiology of Autism Spectrum Disorders. Annual Review of Public Health, 235-258.
• Ooi, K. L., Mehmood, Y. S., Khan, S. A., & Tahir. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 745-762.
• Patton, M. Q. (2014). Qualitative Research & Evaluation Methods. California: Sage Publications.
• Rogge, N., & Janssen, J. (2019). The Economic Costs of Autism Spectrum Disorder: A Literature Review. Journal of Autism and Developmental Disorders, 2873-2900.
• Uskun, E., & Gündoğar, D. (2010). The levels of stress, depression and anxiety of parents of disabled children in Turkey. Disability and Rehabilitation, 1917-1927.
• Wiseman, N. D. (2009). The first year: Autism spectrum disorders: An essential guide for the newly diagnosed child. Pennsylvania: Da Capo Press.
• Yüksel, A. (2005). Otizm Genetiği. Cerrahpaşa Tıp Dergisi, 35-41.