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The Experiences of Families with Autistic Children with Their Difficulties

Year 2021, Volume: 18 Issue: 43, 6682 - 6707, 07.11.2021
https://doi.org/10.26466/opus.923379

Abstract

It is a broad-spectrum neurodevelopmental disorder that manifests symptoms of autism in early childhood and its effects usually last a lifetime. The global prevalence of autism increases exponentially with each passing year, and studies focusing on individuals with autism and their families are becoming more important. Because autism is a disorder that seriously affects not only the individual but also the well-being of family members. Although there are burdens related to care, psychological and social burdens on families affect family dynamics. The aim of this study is to reveal the experiences of families with children with autism regarding psychological and financial difficulties and to determine their needs. The research was qualitatively designed to explore families' feelings, experiences and perceptions about having a child with autism. For this purpose, in-depth interviews were conducted with 10 parents who were medically diagnosed with autism for their children under the age of 18. Purposeful sampling was used to determine the study group. The data were obtained as a result of face-to-face interviews conducted by the researcher using a semi-structured interview form and analyzed with the MAXQDA 2020 program. Families have various difficulties regarding pre-diagnosis, post-diagnosis and social acceptance. Difficulties include the prolongation of the time between the moment when families are in doubt and the time they go to professionals for a diagnosis. This is about non-acceptance and denial. Families who have difficulties in accepting after the diagnosis go to different professionals during this process, which causes delays in early intervention and education. The families stated that they do not have a clear road map about what to do after the diagnosis and that informing the family is quite sufficient.

References

  • Ailing-Moh, T. and 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, 6(1), 293-303.
  • Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. and 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, 268(9531), 210-215.
  • Baker, S. M. (2013). Learning about autism. Global Advances In Health And Medicine, 2(6), 38-46.
  • Benderix, Y., Nordström, B. and Sivberg, B. (2006). Parents’ experience of having a child with autism and learning disabilities living in a group home. A case study. Autism, 10(6), 629-641.
  • Bilgiç, A. ve Cöngöloğlu, A. (2009). Otizm spektrum bozukluklarında biyolojik temelli tamamlayıcı ve alternatif tıp uygulamaları. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 16(3), 153-164.
  • Coren, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L. and 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, 118(4), 1203-1211.
  • Creswell, J. W. (1994). Research design: Qualitative & quantitative approaches. New York: Sage Publications Inc.
  • Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E. and Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34(2), 211-222.
  • Fletcher, P. C., Markoulakis, R. and Bryden, P. J. (2012). The costs of caring for a child with an autism spectrum disorder. Comprehensive Child and Adolescent Nursing, 35(1), 45-69.
  • Frith, U. (2008). Autism: A very short introduction. Oxford: Oxford University Press.
  • Gau, S. S.F., Chou, M.C., Chiang, H.L., Lee, J.C., Wong, C.C., Chou, W.J. and Wu, Y.-Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263-270.
  • Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417-425.
  • Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G. and Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 14(4), 449-457.
  • Hayes, S. A. and 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, 43(3), 629-642.
  • Howlin, P. and Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1(2), 135-162.
  • Kaya, Ö. (2016). Otizm spektrum bozukluğu olan bireylerin değerlendirilmesi. Ş. Y. Özkan, Y. Ergenekon, A. Çolak ve Ö. Kaya içinde, Otizm Spektrum Bozukluğu (s.59-92). Ankara: Grafiker Yayınları.
  • Kayaoğlu, H. ve Görür, Ö. (2008). Otistik çocuklar nasıl öğrenir? Ankara: Epsos Yayınları.
  • Keen, D., Couzens, D., Muspratt, S. and 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, 4(2), 229-241.
  • Köse, S., Özbaran, B ve Erermiş, S. (2012). Otizm yelpaze bozukluklarında nöropsikolojik profil. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 19(2), 103-115.
  • Kuckartz, U. and Rädiker, S. (2019). Analyzing qualitative data with MAXQDA. USA: Springer.
  • Kuhn, R. and Cahn, C. H. (2004). Eugen Bleuler’s concepts of psychopathology. History of Psychiatry, 15(3), 361-366.
  • Lee, L.-C., Harrington, R. A., Louie, B. B. and Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147-1160.
  • Lotter, V. (1966). Epidemiology of autistic conditions in young children. Social Psychiatry, 1(1), 124-137.
  • Marcus, L. M., Kunce, L. J. and Schopler, E. (2005). Working with families. F. R. Volkmar, R. Paul, A. Klin and 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, 11(1), 29-36.
  • Midence, K. and O'Neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273-285. Morse, J. M. (2016). What is qualitative research? Qualitative Health Research, 25(1), 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, 28, 235-258.
  • Ooi, K. L., Mehmood, Y. S., Khan, S. A. and Tahir. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 5(12), 745-762.
  • Patton, M. Q. (2014). Qualitative research & evaluation methods. California: Sage Publications.
  • Rogge, N. and Janssen, J. (2019). The economic costs of autism spectrum disorder: A literature review. Journal of Autism and Developmental Disorders, 49(7), 2873-2900.
  • Wiseman, N. D. (2009). The first year: Autism spectrum disorders: An essential guide for the newly diagnosed child. Pennsylvania: Da Capo Press.
  • Yılmaz, M. and Atalar, U. (2021). Otizmli kardeşe sahip çocukların yapısal aile terapisi. İnsan ve Toplum Bilimleri Araştırması Dergisi, 10(1), 590-604.
  • Yüksel, A. (2005). Otizm genetiği. Cerrahpaşa Tıp Dergisi, 22(1), 35-41.

Otizmli Çocuğa Sahip Ailelerin Yaşadıkları Zorluklara İlişkin Deneyimleri

Year 2021, Volume: 18 Issue: 43, 6682 - 6707, 07.11.2021
https://doi.org/10.26466/opus.923379

Abstract

Otizm belirtilerinin erken çocukluk döneminde ortaya çıkan ve etkileri genellikle bir ömür süren geniş spektrumlu nöro-gelişimsel bir bozukluktur. Otizmin küresel yaygınlığı her geçen yıl katlanarak artmakta ve bu durum otizmli birey ve ailelerini odak alan çalışmalar daha önemli hale gelmektedir. Zira otizm sadece bireyin değil aile üyelerinin iyilik halini de ciddi anlamda etkileyen bir bozukluktur. Başta bakım ile ilgili yükler olmakla birlikte aileler üzerindeki psikolojik ve sosyal yükler, aile dinamiklerini etkilemektedir. Bu çalışmanın amacı da otizmli çocuğa sahip ailelerin yaşadıkları psikolojik ve sosyal zorluklara ilişkin deneyimlerini ortaya koymak ve ihtiyaçlarını belirlemektir. Araştırma, ailelerin otizmli çocuğa sahip olma konusundaki hislerini, deneyimlerini ve algılarını keşfetmek amacıyla nitel olarak tasarlanmıştır. Bu amaç doğrultusunda 18 yaş altı çocukları için tıbbi anlamda otizm tanısı almış 10 ebeveyn ile derinlemesine görüşmeler gerçekleştirilmiştir. Çalışma grubunun belirlenmesinde amaçlı örneklem kullanılmıştır. Veriler yarı yapılandırılmış görüşme formu kullanılarak araştırmacı tarafından gerçekleştirilen yüz yüze görüşmeler neticesinde elde edilmiş ve MAXQDA 2020 programı ile analiz edilmiştir. Ailelerin tanı öncesi, tanı sonrası ve sosyal kabul ile ilgili çeşitli zorlukları bulunmaktadır. Ailelerin şüphe duydukları an ile tanı almak için profesyonellere gitme süreleri arasında geçen sürenin uzaması zorluklar arasındadır. Bu durum kabullenmeme ve inkâr ile ilgilidir. Tanı sonrası kabullenmekte zorlanan aileler bu süreçte farklı profesyonellere gitmekte ve bu durum erken müdahale ve eğitimle ilgili gecikmelere neden olmaktadır. Aileler tanı sonrası ne yapacakları ile ilgili net bir yol haritasına sahip olmamayı ve aile bilgilendirmesinin oldukça yeteriz olduğunu belirtmişlerdir.

References

  • Ailing-Moh, T. and 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, 6(1), 293-303.
  • Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. and 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, 268(9531), 210-215.
  • Baker, S. M. (2013). Learning about autism. Global Advances In Health And Medicine, 2(6), 38-46.
  • Benderix, Y., Nordström, B. and Sivberg, B. (2006). Parents’ experience of having a child with autism and learning disabilities living in a group home. A case study. Autism, 10(6), 629-641.
  • Bilgiç, A. ve Cöngöloğlu, A. (2009). Otizm spektrum bozukluklarında biyolojik temelli tamamlayıcı ve alternatif tıp uygulamaları. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 16(3), 153-164.
  • Coren, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L. and 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, 118(4), 1203-1211.
  • Creswell, J. W. (1994). Research design: Qualitative & quantitative approaches. New York: Sage Publications Inc.
  • Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E. and Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34(2), 211-222.
  • Fletcher, P. C., Markoulakis, R. and Bryden, P. J. (2012). The costs of caring for a child with an autism spectrum disorder. Comprehensive Child and Adolescent Nursing, 35(1), 45-69.
  • Frith, U. (2008). Autism: A very short introduction. Oxford: Oxford University Press.
  • Gau, S. S.F., Chou, M.C., Chiang, H.L., Lee, J.C., Wong, C.C., Chou, W.J. and Wu, Y.-Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263-270.
  • Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417-425.
  • Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G. and Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 14(4), 449-457.
  • Hayes, S. A. and 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, 43(3), 629-642.
  • Howlin, P. and Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1(2), 135-162.
  • Kaya, Ö. (2016). Otizm spektrum bozukluğu olan bireylerin değerlendirilmesi. Ş. Y. Özkan, Y. Ergenekon, A. Çolak ve Ö. Kaya içinde, Otizm Spektrum Bozukluğu (s.59-92). Ankara: Grafiker Yayınları.
  • Kayaoğlu, H. ve Görür, Ö. (2008). Otistik çocuklar nasıl öğrenir? Ankara: Epsos Yayınları.
  • Keen, D., Couzens, D., Muspratt, S. and 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, 4(2), 229-241.
  • Köse, S., Özbaran, B ve Erermiş, S. (2012). Otizm yelpaze bozukluklarında nöropsikolojik profil. Çocuk ve Gençlik Ruh Sağlığı Dergisi, 19(2), 103-115.
  • Kuckartz, U. and Rädiker, S. (2019). Analyzing qualitative data with MAXQDA. USA: Springer.
  • Kuhn, R. and Cahn, C. H. (2004). Eugen Bleuler’s concepts of psychopathology. History of Psychiatry, 15(3), 361-366.
  • Lee, L.-C., Harrington, R. A., Louie, B. B. and Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147-1160.
  • Lotter, V. (1966). Epidemiology of autistic conditions in young children. Social Psychiatry, 1(1), 124-137.
  • Marcus, L. M., Kunce, L. J. and Schopler, E. (2005). Working with families. F. R. Volkmar, R. Paul, A. Klin and 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, 11(1), 29-36.
  • Midence, K. and O'Neill, M. (1999). The experience of parents in the diagnosis of autism. Autism, 3(3), 273-285. Morse, J. M. (2016). What is qualitative research? Qualitative Health Research, 25(1), 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, 28, 235-258.
  • Ooi, K. L., Mehmood, Y. S., Khan, S. A. and Tahir. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 5(12), 745-762.
  • Patton, M. Q. (2014). Qualitative research & evaluation methods. California: Sage Publications.
  • Rogge, N. and Janssen, J. (2019). The economic costs of autism spectrum disorder: A literature review. Journal of Autism and Developmental Disorders, 49(7), 2873-2900.
  • Wiseman, N. D. (2009). The first year: Autism spectrum disorders: An essential guide for the newly diagnosed child. Pennsylvania: Da Capo Press.
  • Yılmaz, M. and Atalar, U. (2021). Otizmli kardeşe sahip çocukların yapısal aile terapisi. İnsan ve Toplum Bilimleri Araştırması Dergisi, 10(1), 590-604.
  • Yüksel, A. (2005). Otizm genetiği. Cerrahpaşa Tıp Dergisi, 22(1), 35-41.
There are 33 citations in total.

Details

Primary Language Turkish
Subjects Sociology (Other), Psychology
Journal Section Articles
Authors

Ferhat Toper 0000-0001-6398-5343

Yasemin Özkan 0000-0002-2968-363X

Publication Date November 7, 2021
Acceptance Date June 16, 2021
Published in Issue Year 2021 Volume: 18 Issue: 43

Cite

APA Toper, F., & Özkan, Y. (2021). Otizmli Çocuğa Sahip Ailelerin Yaşadıkları Zorluklara İlişkin Deneyimleri. OPUS International Journal of Society Researches, 18(43), 6682-6707. https://doi.org/10.26466/opus.923379