A Challenge for Parents? Understanding The Needs of a Psychoeducational Program for Parents of Children with Autism Spectrum Disorder
Abstract
Autism spectrum disorder (ASD) is a disorder with a high prevalence and continues to increase from time to time. ASD is still considered a taboo and a scourge. Whereas ASD is not a disease, but a disorder characterized by a decrease in the quality of individuals in social interactions, communication skills, and repetitive interests and behaviors. Due to the increasing prevalence of ASD and the lack of available information, this study seeks to explore the need for whether a parental assistance program is needed when dealing with a diagnosis of ASD in their child. The research method used in this research is qualitative. Researchers involved 6 participants consisting of 2 parents of children diagnosed with ASD, 2 parents of children with typical development, and 2 therapists who have treated children with special. The sampling technique used is purposive sampling. The findings in this study indicate that not much is known about ASD by parents. Parents do a lot of searching independently but the information obtained is generally limited. Parents are also often still confused about understanding ASD and what actions can be taken to help their child. One of the main problems parents face when dealing with an ASD diagnosis is acceptance.
Autism spectrum disorder (ASD) menjadi gangguan dengan prevalensi yang cukup tinggi dan terus meningkat dari waktu ke waktu. ASD masih dianggap tabu dan menjadi momok. Padahal ASD bukanlah suatu penyakit, melainkan sebuah gangguan yang ditandai dengan penurunan kualitas individu dalam interaksi sosial, kemampuan komunikasi, serta minat dan perilaku yang berulang. Dengan prevalensi ASD yang terus meningkat dan kurangnya informasi yang tersedia, penelitian ini bertujuan untuk menggali kebutuhan apakah suatu program psikoedukasi bagi orang tua dibutuhkan ketika menghadapi diagnosa ASD pada anaknya. Metode penelitian yang dilakukan dalam penelitian ini adalah kualitatif. Peneliti melibatkan 6 orang partisipan yang terdiri dari 2 orang tua dengan anak terdiagnosa ASD, 2 orang tua dari anak dengan perkembangan tipikal, dan 2 orang terapis yang menangani anak berkebutuhan khusus. Teknik sampling yang digunakan adalah purposive sampling. Temuan dalam penelitian ini menunjukkan bahwa pengetahuan mengenai ASD belum banyak diketahui oleh para orang tua. Orang tua banyak melakukan pencarian secara mandiri namun informasi yang didapat umumnya terbatas. Orang tua juga seringkali masih mengalami kebingungan dalam memahami ASD dan tindakan apa yang dapat dilakukan untuk membantu anak mereka. Salah satu permasalahan utama yang dihadapi orang tua ketika menghadapi diagnosa ASD adalah penerimaan.
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Al Almaei Asiri, W. M., Shati, A. A., Al-Qahtani, S., Al-Qahtani, Y. A., Aldarami, M. S., Alamri, F. D., … Esam Mahmood, S. (2023). Assessment of parental knowledge, awareness, and perception about autism spectrum disorders in ASEER region, southwestern Saudi Arabia. International Journal of General Medicine, Volume 16, 557–564. doi:10.2147/ijgm.s377521
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washingtong, DC: Author
Arman, A.N. and Kurniawati, F. (2019) ‘Psychoeducation “aku peduli” for parent with typically developing children at an inclusive kindergarten’, ASEAN Journal of Community Engagement, 3(2). doi:10.7454/ajce.v3i2.1060.
Ardhanareeswaran, K., & Volkmar, F. (2015). Introduction. Focus: autism spectrum disorders. The Yale journal of biology and medicine, 88(1), 3–4.Baio, J., Wiggins, L., Christensen, D. L., dkk. (2018). Prevalence of autism spectrum disorder among children aged 8 years. Autism and developmental disabilities monitoring network, 11 sites. United States, 2014. MMWR Surveillance Summaries
Asih, D. P. (2009). Needs Assessment untuk mengetahui stress dan coping pada ibu dengan remaja autistic. (Tesis, Universitas Indonesia).
Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015). Parent Training in Autism Spectrum Disorder: What's in a Name?. Clinical child and family psychology review, 18(2), 170–182. https://doi.org/10.1007/s10567-015-0179-5
Christensen, D. L., Bilder, D. A., Zahorodny, W., dkk (2016). Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. J. Dev. Pediatr. 37: 1-8
Da Paz, N. S., Siegel, B., Coccia, M. A., & Epel, E. S. (2018). Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism. Journal of autism and developmental disorders, 48(6), 1971–1981. https://doi.org/10.1007/s10803-017-3450-4
Dawson-Squibb, J.-J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2019). Parent education and training for autism spectrum disorders: Scoping the evidence. Autism, 24(1), 7–25. doi:10.1177/1362361319841739
Di Renzo, M., Guerriero, V., Zavattini, G. C., Petrillo, M., Racinaro, L., & Bianchi di Castelbianco, F. (2020). Parental attunement, insightfulness, and acceptance of child diagnosis in parents of children with autism: Clinical implications. Frontiers in Psychology, 11. doi:10.3389/fpsyg.2020.01849
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2017). Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships. Psychology research and behavior management, 10, 283–292. https://doi.org/10.2147/PRBM.S117499
Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2020). Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism, 24(2), 470–483. https://doi.org/10.1177/1362361319874647
Estes, A., Munson, J., Rogers, S. J., Greenson, J., Winter, J., & Dawson, G. (2015). Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 54(7), 580–587. https://doi.org/10.1016/j.jaac.2015.04.005
Gabbay-Dizdar, N., Ilan, M., Meiri, G., Faroy, M., Michaelovski, A., Flusser, H., Menashe, I., Koller, J., Zachor, D. A., & Dinstein, I. (2021). Early diagnosis of autism in the community is associated with marked improvement in social symptoms within 1–2 years. Autism. https://doi.org/10.1177/13623613211049011
Jagan, V., & Sathiyaseelan, A. (2016). Early intervention and diagnosis of autism. Indian Journal of Health and Wellbeing, 7(12), 1144-1148. http://www.iahrw.com/index.php/home/journal_detail/19#lis
Jeong, J. et al. (2021) ‘Parenting interventions to promote early child development in the first three years of life: A global systematic review and meta-analysis’, PLOS Medicine, 18(5). doi:10.1371/journal.pmed.1003602
Kementerian PPPA RI. (2018). Hari peduli autisme sedunia: Kenali gejalanya, pahami keadaanya. Ditemu kembali dari https://www.kemenpppa.go.id/index.php/page/read/31/1682/hari-peduli-autisme-sedunia-kenali-gejalanya-pahami-keadaannya
Khalil, A. I., & MShoeib, A. (2018). Impact of short term psycho educational intervention in developing knowledge and awareness of parents having autistic children. International Journal of Psychiatry, 3(1)
Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families' Lives. Journal of autism and developmental disorders, 46(3), 942–953. https://doi.org/10.1007/s10803-015-2637-9
Lilly, J., & Tungol, J.R. (2015). Effectiveness of mindfulness based psycho-educational program on parental stress of selected mothers of children with autism. Indian Journal of Positive Psychology, 6(1), 52-56
Legg, H., Tickle, A., Gillott, A. et al. (2022). Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood. J Autism Dev Disord. https://doi.org/10.1007/s10803-021-05296-y
Mackintosh, V. H., Goin-Kochel, R. P., & Myers , B. J. (2005). Retrieved from https://oadd.org/wp-content/uploads/2016/12/mackintoshEtAl.pdf
Maria da Luz, V. D., Luiza, N. L. (2018). Parents knowledge about the development of children aged 2 to 6 years old. International Journal of Developmental and Educational Psychology, vol. 4, (1).
Nevill, R. E., Lecavalier, L., & Stratis, E. A. (2018). Meta-analysis of parent-mediated interventions for young children with autism spectrum disorder. Autism, 22(2), 84–98. https://doi.org/10.1177/1362361316677838
Patra, S., Arun, P., & Chavan, B. S. (2015). Impact of psychoeducation intervention module on parents of children with autism spectrum disorders: A preliminary study. Journal of Neurosciences in Rural Practice, 06(04), 529–535. doi:10.4103/0976-3147.165422
Poslawsky, I. E., Naber, F. B. A., Van Daalen, E., & Van Engeland, H. (2013). Parental Reaction to Early Diagnosis of Their Children’s Autism Spectrum Disorder: An Exploratory Study. Child Psychiatry & Human Development, 45(3), 294–305. doi:10.1007/s10578-013-0400-z
Poerwandari, Kristi. (2005). Pendekatan Kualitatif untuk Penelitian Perilaku Manusia. Jakarta: Fakultas Psikologi UI
Buteau-Poulin, A., Gosselin, C., Bergeron-Ouellet, A., Kiss, J., Lamontagne, M. È., Maltais, D., Trottier, C., & Desmarais, C. (2020). Availability and Quality of Web Resources for Parents of Children With Disability: Content Analysis and Usability Study. JMIR pediatrics and parenting, 3(2), e19669. https://doi.org/10.2196/19669
Rahardjo, Mudjia. (2017). Studi kasus dalam penelitian kualitatif: konsep dan prosedurnya. Retrieved from: http://repository.uin-malang.ac.id/1104/
Rasyidayanti, A., Faradisa, L.N., & Sosialita, T.D. (2023). Pendidikan Seks Usia Dini dan Pentingnya Peran Orangtua untuk Terlibat. Psikostudia, 12 (2). DOI: http://dx.doi.org/10.30872/psikostudia.v12i2
Roane, H. S., Fisher, W. W., & Carr, J. E. (2016). Applied behavior analysis as treatment for autism spectrum disorder. The Journal of Pediatrics, 178. DOI:https://doi.org/10.1016/j.jpeds.2016.04.023.
Saad, A.S.A., Shafik, S. A., Mahmoud, N. F., & El Awady, S. M. (2020). Parents' knowledge and Attitude Regarding their Autistic Children. IOSR Journal of Nursing and Health Science (IOSR-JNHS), 9 (6), 33-44. doi: 10.9790/1959-0906073344
Sidjaja, F. F., Newcombe, P. A., Irwanto, & Sofronoff, K. (2016). The diagnosis of autism spectrum disorder in Urban Indonesia: A brief report. International Journal of Disability, Development and Education, 64(1), 33–44. doi:10.1080/1034912x.2016.1162768
Smith-Young, J., Chafe, R., & Audas, R. (2020). “Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder. Health Services Insights. https://doi.org/10.1177/1178632920902141
Smith, I. C., Cox, B. E., & White, S. W. (2019): Helping Parents with the Initial Diagnosis of Autism: Parent-Informed Guidance for Clinicians, Evidence-Based Practice in Child and Adolescent Mental Health. Doi: 10.1080/23794925.2019.1626781
Snijder, M.I.J., Langerak, I.P.C., Kaijadoe, S.P.T. et al. (2021). Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies. J Autism Dev Disord. https://doi.org/10.1007/s10803-021-05226-y
Srivastava, A. K., & Schwartz, C. E. (2014). Intellectual disability and autism spectrum disorders: causal genes and molecular mechanisms. Neuroscience and biobehavioral reviews, 46 Pt 2, 161–174. https://doi.org/10.1016/j.neubiorev.2014.02.015
Wutchiett, R., Egan, D., Kohaut, S., Markman, H. J., & Pargament, K. I. (1984). Assessing the need for a needs assessment. Journal of Community Psychology, 12(1), 53–60. doi:10.1002/1520-6629(198401)12:1<53::aid-jcop2290120107>3.0.co;2-u
Wirawan, K. N. (2017, Juli). Autisme: Adakah harapan. Ikatan Dokter Anak Indonesia. Retrieved from www.idai.or.id/artikel/seputar-kesehatan-anak/autime-adakah-harapan
DOI: http://dx.doi.org/10.30872/psikostudia.v12i3.11175
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