PENGALAMAN ORANG TUA MENGASUH REMAJA DENGAN AUTISM SPECTRUM DISORDERS (ASD) SAAT PANDEMIK COVID-19
Keywords:
Autism Spectrum Disorder, COVID-19 pandemic, parents’ experiences, adolescents
Abstract
The COVID-19 pandemic has significantly disrupted educational and healthcare services, including the closure of schools and therapy centers for children and adolescents with Autism Spectrum Disorder (ASD). This situation increased caregiving demands on parents who previously relied on support from teachers and therapists. Adolescents with ASD experience complex developmental impairments that require continuous and specialized care, making the prolonged pandemic particularly challenging for parents in managing caregiving, education, and therapy at home. This study aimed to explore parents’ experiences in caring for adolescents with ASD during the COVID-19 pandemic in Pontianak City, West Kalimantan, Indonesia. A qualitative study with a descriptive phenomenological approach was conducted. Data were collected through focus group discussions with parents of adolescents with ASD aged 9–18 years and analyzed using Colaizzi’s method. The findings identified three main themes: increased caregiving burden, mental health challenges, and parents’ expectations regarding government policies on education and healthcare services for children with ASD. These findings highlight the need for supportive policies and the active involvement of healthcare professionals, particularly nurses, to promote parental well-being and continuity of care during public health crises.
References
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Noble, H., & Mitchell, G. (2016). What is grounded theory? Evidence-Based Nursing, 19(2), 34–35. https://doi.org/10.1136/eb-2016-102306
Onaolapo, A., & Onaolapo, O. (2017). Global Data on Autism Spectrum Disorders Prevalence: A Review of Facts, Fallacies and Limitations. Universal Journal of Clinical Medicine, https://doi.org/10.13189/UJCM.2017.050202 5(2), 14–23.
Polit, D. F., & Beck, C. T. (2010). Nursing Research Appraising Evidence For Nursing Practice (7th ed.). New York: Walter Kluwer.
Priherdityo, E. (2016, April). Indonesia masih gelap tentang Autisme. Retrieved from https://www.cnnindonesia.com/gaya-hidup/20160407160237-255 122409/indonesia-masih-gelap-tentang-autisme
Ramalho, R., Adams, P., Huggard, P., & Hoare, K. (2015). Literature review and constructivist grounded theory methodology. Forum Qualitative Sozialforschung, 16(3). https://doi.org/10.17169/fqs-16.3.2313
Rodrigues, P. M. da S., Albuquerque, M. C. dos S. de, Brêda, M. Z., Bittencourt, I. G. de S., Melo, G. B. de, Leite, A. de A., Leite, A. de A. (2017). Self-care of a child with autism spectrum by means of Social Stories. Escola Anna Nery - Revista de Enfermagem, 21(1). https://doi.org/10.5935/1414-8145.20170022
Singh, S., & Estefan, A. (2018). Selecting a Grounded Theory Approach for Nursing Research. Global Qualitative https://doi.org/10.1177/2333393618799571 Nursing Research, 5.
Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry, 51(6), 622–631. https://doi.org/10.1016/j.jaac.2012.03.001
Tamba, A. (2018, April). Trend penderita autisme meningkat. Retrieved from http://harnas.co/2018/04/01/tren-penderita-autisme-meningkat
Taylor S.G, R. K. M. (2011). Self-care science, nursing theory, and evidence-based practice. (R. M. Piscitelli, Ed.). Retrieved from www.googlebook.com
Veterans Affairs Canada. (2014). Impairment in activities of daily living. Retrieved from http://www.veterans.gc.ca/eng/services/after-injury/disability benefits/benefits-determined/table-of-disabilities/ch-19-2006
Votroubek, W., & Tabacco, A. (2010). Pediatric Home Care for Nurses: A Family Centered Approach. Retrieved from https://books.google.co.id/books?id=s1GhkD1WS30C&printsec=frontcover &dq=Pediatric+Home+Care+for+Nurses:+A+Family Centered+Approach&hl=id&sa=X&ved=0ahUKEwidt_aMq nlAhWbX30KHbHpALwQ6AEIKDAA#v=onepage&q=Pediatric Home Care for Nurses%3A A Family-Centered App
WHO. (2013). Comprehensive and coordinated efforts for the management of autism spectrum disorders. Retrieved http://www.who.int/gho/publications/world_health_statistics/2013/en
WHO. (2019). Autism Spectrum Disorders. Retrieved November 12, 2019, from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Zhou, W., Liu, D., Xiong, X., & Xu, H. (2019). Emotional problems in mothers of autistic children and their correlation with socioeconomic status and the childrenʼs core symptoms. Medicine,https://doi.org/10.1097/md.0000000000016794
Badan Pusat Statistik. (2010). Informasi mengenai autisme dan pendidikannya. Retrieved from http://www.ditbb.or.id//new
Bozkurt, G., Uysal, G., & Düzkaya, D. S. (2019). Examination of care burden and stress coping styles of parents of children with Autism Spectrum Disorder. Journal of Pediatric Nursing, https://doi.org/10.1016/j.pedn.2019.05.005 47, 142–147.
CDC. (2015). Autism Spectrum Disorders. Retrieved November 15, 2019, from https://www.cdc.gov/ncbddd/autism/index.html
CDC. (2018). CDC increase estimate of autism’s prevalence by 15 percent to 1 in 59 children. Retrieved September 26, 2019, from https://www.autismspeaks.org/science-news/cdc-increases-estimate-autisms prevalence-15-percent-1-59-children
Charmaz, K. (2016). The Power of Constructivist Grounded Theory for Critical Inquiry. Qualitative Inquiry, https://doi.org/10.1177/1077800416657105 23(1), 34–45.
Chun Tie, Y., Birks, M., & Francis, K. (2019). Grounded theory research: A design framework for novice researchers. SAGE Open Medicine, 7, 205031211882292. https://doi.org/10.1177/2050312118822927
Corbin, J., & Strauss, A. (2008). Basics of qualitative research: techniques and procedures for developing grounded theory (3rd ed). Thousand Oaks, CA: SAGE.
Creswell, J. W. (2014). Penelitian kualitatif & desain riset (3rd ed.). Yogyakarta: Pustaka Pelajar.
Crossetti, M. da G. O., de Goes, M. G. O., & de Brum Federal, C. N. (2016). Application of constructivist grounded theory in nursing research. Qualitative Report, 21(13), 48–53. Retrieved from https://nsuworks.nova.edu/cgi/viewcontent.cgi?article=2610&context=tqr
Delamont, S. (2012). Handbook of Qualitative Research in Education. Retrieved from https://books.google.co.id/books?id=vcm24cIV UIC&printsec=frontcover&dq=Handbook+of+Qualitative+Research+in+Edu cation.&hl=id&sa=X&ved=0ahUKEwjY0_a senlAhVOWX0KHUdQBsMQ6AEIKDAA#v=onepage&q=Handbook Qualitative Research in Education.&f=false
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2019). Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships Early diagnosis and treatme … treatme …. 1–9.
Fenwick-Smith, A., Dahlberg, E. E., & Thompson, S. C. (2018). Systematic review of resilience-enhancing, universal, primary school-based mental health promotion programs. BMC Psychology, https://doi.org/10.1186/s40359-018-0242-3 6(1), 1–17.
Frye, L. (2016). Fathers’ Experience with Autism Spectrum Disorder: Nursing Implications. Journal of Pediatric Health Care, 30(5), 453–463. https://doi.org/10.1016/j.pedhc.2015.10.012
Fusch, P. I., & Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. Qualitative Report, 20(9), 1408–1416. Retrieved from file:///C:/Users/Azzahra/Downloads/AreWeThereYet DataSaturationinQualitativeResearchTQRPublished.pdf
GetanehAlemu, Stevens, B., Ross, P., & Chandler, J. (2015). The Use of a Constructivist Grounded Theory Method to Explore the Role of Socially Constructed Metadata (Web 2.0) Approaches. Qualitative & Quantitative Methods in Libraries, (4), 517. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=edb&AN=11312405 4&site=eds-live
Kaakinen, J., Coehlo, D., Steele, R.., & Robinson, M. (2018). Family health care nursing: theory, practice and research. Retrieved from https://books.google.co.id/books?id=wNFJDwAAQBAJ&printsec=frontcove r&dq=Family+Health+Care+Nursing:+Theory,+Practice,+and+Research&hl =id&sa=X&ved=0ahUKEwjmlffIq nlAhUHU30KHfCCBzQQ6AEIKDAA#v=onepage&q=Family Health Care Nursing%3A Theory%2C Practice%2C
Kementerian Pendidikan dan Kebudayaan Pusat Data dan Statistik Pendidikan dan Kebudayaan. (2017). Sekolah inklusi dan pembangunan SLB dukung pendidikan inklusi. Retrieved October 12, 2018, https://www.kemdikbud.go.id/main/blog/2017/02/sekolah-inklusi-dan pembangunan-slb-dukung-pendidikan-inklusi
Lestari, L., Herini, E., & Gamayanti, I. (2017). Main Caregiver’s Experience in Meeting Self-Care Needs among Adolescents with ASD in Pontianak Municipality, West Borneo, Indonesia: A Qualitative Study. Belitung Nursing Journal, 3(4), 316–328. https://doi.org/https://doi.org/10.33546/bnj.123
Mostafa, Mona, H. (2019). Stress and Coping Strategies Among Parents of Children with Autism Spectrum Disorder. PEOPLE: International Journal of Social Sciences, 5(1), 17–29. https://doi.org/10.20319/pijss.2019.51.1729
Noble, H., & Mitchell, G. (2016). What is grounded theory? Evidence-Based Nursing, 19(2), 34–35. https://doi.org/10.1136/eb-2016-102306
Onaolapo, A., & Onaolapo, O. (2017). Global Data on Autism Spectrum Disorders Prevalence: A Review of Facts, Fallacies and Limitations. Universal Journal of Clinical Medicine, https://doi.org/10.13189/UJCM.2017.050202 5(2), 14–23.
Polit, D. F., & Beck, C. T. (2010). Nursing Research Appraising Evidence For Nursing Practice (7th ed.). New York: Walter Kluwer.
Priherdityo, E. (2016, April). Indonesia masih gelap tentang Autisme. Retrieved from https://www.cnnindonesia.com/gaya-hidup/20160407160237-255 122409/indonesia-masih-gelap-tentang-autisme
Ramalho, R., Adams, P., Huggard, P., & Hoare, K. (2015). Literature review and constructivist grounded theory methodology. Forum Qualitative Sozialforschung, 16(3). https://doi.org/10.17169/fqs-16.3.2313
Rodrigues, P. M. da S., Albuquerque, M. C. dos S. de, Brêda, M. Z., Bittencourt, I. G. de S., Melo, G. B. de, Leite, A. de A., Leite, A. de A. (2017). Self-care of a child with autism spectrum by means of Social Stories. Escola Anna Nery - Revista de Enfermagem, 21(1). https://doi.org/10.5935/1414-8145.20170022
Singh, S., & Estefan, A. (2018). Selecting a Grounded Theory Approach for Nursing Research. Global Qualitative https://doi.org/10.1177/2333393618799571 Nursing Research, 5.
Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry, 51(6), 622–631. https://doi.org/10.1016/j.jaac.2012.03.001
Tamba, A. (2018, April). Trend penderita autisme meningkat. Retrieved from http://harnas.co/2018/04/01/tren-penderita-autisme-meningkat
Taylor S.G, R. K. M. (2011). Self-care science, nursing theory, and evidence-based practice. (R. M. Piscitelli, Ed.). Retrieved from www.googlebook.com
Veterans Affairs Canada. (2014). Impairment in activities of daily living. Retrieved from http://www.veterans.gc.ca/eng/services/after-injury/disability benefits/benefits-determined/table-of-disabilities/ch-19-2006
Votroubek, W., & Tabacco, A. (2010). Pediatric Home Care for Nurses: A Family Centered Approach. Retrieved from https://books.google.co.id/books?id=s1GhkD1WS30C&printsec=frontcover &dq=Pediatric+Home+Care+for+Nurses:+A+Family Centered+Approach&hl=id&sa=X&ved=0ahUKEwidt_aMq nlAhWbX30KHbHpALwQ6AEIKDAA#v=onepage&q=Pediatric Home Care for Nurses%3A A Family-Centered App
WHO. (2013). Comprehensive and coordinated efforts for the management of autism spectrum disorders. Retrieved http://www.who.int/gho/publications/world_health_statistics/2013/en
WHO. (2019). Autism Spectrum Disorders. Retrieved November 12, 2019, from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Zhou, W., Liu, D., Xiong, X., & Xu, H. (2019). Emotional problems in mothers of autistic children and their correlation with socioeconomic status and the childrenʼs core symptoms. Medicine,https://doi.org/10.1097/md.0000000000016794
Published
2025-10-30
How to Cite
Lestari, L., Ramadhaniyati, R., Triadmodjo, S., Fadila, Y., Tauhidia, R., & Utami, W. (2025). PENGALAMAN ORANG TUA MENGASUH REMAJA DENGAN AUTISM SPECTRUM DISORDERS (ASD) SAAT PANDEMIK COVID-19. Jurnal Keperawatan Dan Kesehatan, 16(2), 420-427. https://doi.org/10.54630/jk2.v16i2.600
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Articles
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