The Experiences of Mother who has Children with Autism
Abstract
Purpose. This study aimed to determine the experience of mothers who have autistic children. Methods. This qualitative research applied the phenomenological method. The subjects in this study were three early adult mothers with children with autism. A semi-structured interview was used as the data collection method. This study used Interpretative Phenomenological Analysis (IPA) for the data analysis technique. Findings. The results showed that there were 3 main themes: 1) emotional fluctuations (sad, angry, disappointed, worried), 2) parenting for autistic children (mothers experienced stress (easily getting tired, problem-solving disorders, helplessness, behavioral disorders)), and 3) planning for the children's future (professional care, special schools, autism communities).
Keywords: Mother's experience; children; autism
References
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Anderson, J., Marley, C., Gillespie-Smith, K., Carter, L., & MacMahon, K. (2020). When the mask comes off: Mothers’ experiences of parenting a daughter with autism spectrum condition. Autism, 24(6), 1546–1556. https://doi.org/10.1177/1362361320913668
Archi, A., Sri, A., Waridlatul, A., Fatmawati, A., Amalia, A., Tri, A., Ratna, A., Artiga, C., Tiara, D., Munif, B., & Erna, F. D. (2021). Pengalaman Orang Tua dalam Merawat Anak Berkebutuhan Khusus : Literature Review. In Profesional Health Journal (Vol. 3, Issue 1). https://www.ojsstikesbanyuwangi.com/index.php/PHJAdistyArchydkk,PengalamanOrangtuadalammerawatanakKebutuhanKusus….
Aurelia, C., Siregar, M., & Marpaung, W. (2022). Gambaran Psychological Well Being Orang Tua yang Memiliki Anak Autistic Spectrum Disorder (ASD). 7(4).
Chodidjah, S., & Kusumasari, A. P. (2018). Pengalaman Ibu merawat Anak Usia Sekolah dengan Autis. Jurnal Keperawatan Indonesia, 21(2), 94–100. https://doi.org/10.7454/jki.v21i2.545
Cox, C. R., Eaton, S., Ekas, N. v., & van Enkevort, E. A. (2015). Death concerns and psychological well-being in mothers of children with autism spectrum disorder. Research in Developmental Disabilities, 45–46, 229–238. https://doi.org/10.1016/j.ridd.2015.07.029
Dewi, R., Inayatillah, & Yullyana, R. (2018). Pengalaman Orangtua dalam Mengasuh Anak Autis. Psikoislamedia Jurnal Psikologi, 3(2), 288–301. https://www.goaceh.co/berita/baca/2016/11/29
Erina, Elva, S., & Relina, D. (2019). Pengalaman Mekanisme Koping Ibu dengan Anak Penyandang Autisme di Banjarmasin. In JKSI (Vol. 4).
Firdaus, F., & Santy, W. H. (2020). Analisis Faktor Penyebab Perilaku Tantrum pada Anak Autis. Medical Technology and Public Health Journal, 4(1), 55–60. https://doi.org/10.33086/MTPHJ.V4I1.1409
Giannotti, M., Bonatti, S. M., Tanaka, S., Kojima, H., & de Falco, S. (2021). Parenting stress and social style in mothers and fathers of children with autism spectrum disorder: A cross-cultural investigation in italy and Japan. Brain Sciences, 11(11). https://doi.org/10.3390/brainsci11111419
Halstead, E., Ekas, N., Hastings, R. P., & Griffith, G. M. (2018). Associations Between Resilience and the Well-Being of Mothers of Children with Autism Spectrum Disorder and Other Developmental Disabilities. Journal of Autism and Developmental Disorders, 48(4), 1108–1121. https://doi.org/10.1007/s10803-017-3447-z
Heri, M., Gde Trisna Purwantara, K., Agus Ariana, P., & Tinggi Ilmu Kesehatan Buleleng, S. (2021). Terapi Applied Behavior Analysis Meningkatkan Kemampuan Interaksi Sosial pada Anak Autisme Umur 7-12 Tahun. Jurnal Keperawatan Silampari, 5(1), 35–42. https://doi.org/10.31539/JKS.V5I1.2366
Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ Experiences of Accessing Mental Health Care for their Child with an Autism Spectrum Disorder. Journal of Child and Family Studies, 29(2), 534–545. https://doi.org/10.1007/s10826-019-01662-8
Julimet, N., & Cholid, S. (2017). Pelatihan Terapi Autis Metode Applied Behavior Analysis (ABA) (Studi Kasus pada Proses Pelatihan Pemasyarakatan Kelas I Tangerang). Jurnal Ilmu Kesejahteraan Sosial (Journal of Social Welfare), 16(2). https://doi.org/10.7454/JURNALKESSOS.V16I2.52
Kahija, L. (2017). Penelitian Fenomenologis: Jalan Memahami Pengalaman Hidup. PT. Kanisius. www.kanisiusmedia.co.id
Keville, S., Meek, C., & Ludlow, A. K. (2021). Mothers’ perspectives of co-occurring fatigue in children with autism spectrum disorders. Fatigue: Biomedicine, Health and Behavior, 9(4), 209–226. https://doi.org/10.1080/21641846.2021.2008169
Mardawani. (2020). Praktis Penelitian Kualitatif Teori Dasar Dan Analisis Data Dalam Perspekti... - Google Books. Deepublish. https://www.google.co.id/books/edition/Praktis_Penelitian_Kualitatif_Teori_Dasa/nn0GEAAAQBAJ?hl=en&gbpv=1&dq=PENELITIAN+FENOMENOLOGI&pg=PA24&printsec=frontcover
Noor, M., Indriati, G., & Elita, V. (2014). Pengalaman Ibu dalam Merawat Anak Autis Usia Sekolah. JOM PSIK, 1(2), 1.
Nurhidayah, I., Achadiyanti, D., Ghraha Ramdhanie, G., & Keperawatan, F. (2021). Pengetahuan Ibu Tentang Diet Gluten dan Kasein Pada Anak Penyandang Autis. Jurnal Perawat Indonesia, 5(1), 599–611.
Oduyemi, A. Y., Okafor, I. P., Eze, U. T., Akodu, B. A., & Roberts, A. A. (2021). Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study. BMC Psychology, 9(1). https://doi.org/10.1186/s40359-021-00687-3
Parasian, A. T., & Ramadhana, M. R. (2021). Komunikasi Orang Tua Anak pada Penyandang Autisme (Studi Pada Orang Tua Pada Anak Penyandang Autisme di Yayasan Biruku Indonesia). E-Prociding of Management, 8(5), 6879–6887.
Roquette Viana, C., Caldeira, S., Lourenço, M., & Simões Figueiredo, A. (2021). Parenting of children with autism spectrum disorder: A grounded theory study. Healthcare (Switzerland), 9(7). https://doi.org/10.3390/healthcare9070872
Salman. (2014). Pola Komunikasi Orangtua dalam Mengatasi Kesulitan Berkomunikasi Anak Autis (Studi Pada Orangtua Anak Autis Di Sekolah Dasar Swasta Khusus Autis Anak Mandiri Jalan Kutilang No. 5 Sukajadi Kota Pekanbaru). Jom FISIP, 1(2), 1–13.
Shattnawi, K. K., Bani, Saeed, W. M., Al-Natour, A., Al-Hammouri, M. M., Al-Azzam, M., & Joseph, R. A. (2021). Parenting a Child With Autism Spectrum Disorder: Perspective of Jordanian Mothers. Journal of Transcultural Nursing, 32(5), 474–483. https://doi.org/10.1177/1043659620970634
Sinaga, T., & Pandede, J. (2021). Pengetahuan dan Sikap dengan Tindakan Ibu dalam Pola Makan pada Anak Autis. Jurnal Ilmiah STIKES Kendal, 11(1), 77–84.
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis : theory, method and research. In Sage Publishing.
Sudarmintawan, I., Luh, D., Karisma, M., & Suarya, S. (2018). Gambaran Penerimaan Ibu dengan Anak Autisme serta Penerapan terhadap Diet Bebas Gluten dan Kasein. Jurnal Psikologi Udayana, 5(2).
Upoma, T. F., Moonajilin, M. S., Rahman, M. E., & Ferdous, M. Z. (2020). Mothers initial challenges having children with autism spectrum disorders in Bangladesh. Bangladesh Journal of Medical Science, 19(2), 268–272. https://doi.org/10.3329/bjms.v19i2.45006
Wardani, D. S. (n.d.). Strategi Coping Orang Tua Menghadapi Anak Autis. Indigeneous, Jurnal Ilmiah Berkala Psikologi. www.bkkbn.go.id
Anderson, J., Marley, C., Gillespie-Smith, K., Carter, L., & MacMahon, K. (2020). When the mask comes off: Mothers’ experiences of parenting a daughter with autism spectrum condition. Autism, 24(6), 1546–1556. https://doi.org/10.1177/1362361320913668
Archi, A., Sri, A., Waridlatul, A., Fatmawati, A., Amalia, A., Tri, A., Ratna, A., Artiga, C., Tiara, D., Munif, B., & Erna, F. D. (2021). Pengalaman Orang Tua dalam Merawat Anak Berkebutuhan Khusus : Literature Review. In Profesional Health Journal (Vol. 3, Issue 1). https://www.ojsstikesbanyuwangi.com/index.php/PHJAdistyArchydkk,PengalamanOrangtuadalammerawatanakKebutuhanKusus….
Aurelia, C., Siregar, M., & Marpaung, W. (2022). Gambaran Psychological Well Being Orang Tua yang Memiliki Anak Autistic Spectrum Disorder (ASD). 7(4).
Chodidjah, S., & Kusumasari, A. P. (2018). Pengalaman Ibu merawat Anak Usia Sekolah dengan Autis. Jurnal Keperawatan Indonesia, 21(2), 94–100. https://doi.org/10.7454/jki.v21i2.545
Cox, C. R., Eaton, S., Ekas, N. v., & van Enkevort, E. A. (2015). Death concerns and psychological well-being in mothers of children with autism spectrum disorder. Research in Developmental Disabilities, 45–46, 229–238. https://doi.org/10.1016/j.ridd.2015.07.029
Dewi, R., Inayatillah, & Yullyana, R. (2018). Pengalaman Orangtua dalam Mengasuh Anak Autis. Psikoislamedia Jurnal Psikologi, 3(2), 288–301. https://www.goaceh.co/berita/baca/2016/11/29
Erina, Elva, S., & Relina, D. (2019). Pengalaman Mekanisme Koping Ibu dengan Anak Penyandang Autisme di Banjarmasin. In JKSI (Vol. 4).
Firdaus, F., & Santy, W. H. (2020). Analisis Faktor Penyebab Perilaku Tantrum pada Anak Autis. Medical Technology and Public Health Journal, 4(1), 55–60. https://doi.org/10.33086/MTPHJ.V4I1.1409
Giannotti, M., Bonatti, S. M., Tanaka, S., Kojima, H., & de Falco, S. (2021). Parenting stress and social style in mothers and fathers of children with autism spectrum disorder: A cross-cultural investigation in italy and Japan. Brain Sciences, 11(11). https://doi.org/10.3390/brainsci11111419
Halstead, E., Ekas, N., Hastings, R. P., & Griffith, G. M. (2018). Associations Between Resilience and the Well-Being of Mothers of Children with Autism Spectrum Disorder and Other Developmental Disabilities. Journal of Autism and Developmental Disorders, 48(4), 1108–1121. https://doi.org/10.1007/s10803-017-3447-z
Heri, M., Gde Trisna Purwantara, K., Agus Ariana, P., & Tinggi Ilmu Kesehatan Buleleng, S. (2021). Terapi Applied Behavior Analysis Meningkatkan Kemampuan Interaksi Sosial pada Anak Autisme Umur 7-12 Tahun. Jurnal Keperawatan Silampari, 5(1), 35–42. https://doi.org/10.31539/JKS.V5I1.2366
Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ Experiences of Accessing Mental Health Care for their Child with an Autism Spectrum Disorder. Journal of Child and Family Studies, 29(2), 534–545. https://doi.org/10.1007/s10826-019-01662-8
Julimet, N., & Cholid, S. (2017). Pelatihan Terapi Autis Metode Applied Behavior Analysis (ABA) (Studi Kasus pada Proses Pelatihan Pemasyarakatan Kelas I Tangerang). Jurnal Ilmu Kesejahteraan Sosial (Journal of Social Welfare), 16(2). https://doi.org/10.7454/JURNALKESSOS.V16I2.52
Kahija, L. (2017). Penelitian Fenomenologis: Jalan Memahami Pengalaman Hidup. PT. Kanisius. www.kanisiusmedia.co.id
Keville, S., Meek, C., & Ludlow, A. K. (2021). Mothers’ perspectives of co-occurring fatigue in children with autism spectrum disorders. Fatigue: Biomedicine, Health and Behavior, 9(4), 209–226. https://doi.org/10.1080/21641846.2021.2008169
Mardawani. (2020). Praktis Penelitian Kualitatif Teori Dasar Dan Analisis Data Dalam Perspekti... - Google Books. Deepublish. https://www.google.co.id/books/edition/Praktis_Penelitian_Kualitatif_Teori_Dasa/nn0GEAAAQBAJ?hl=en&gbpv=1&dq=PENELITIAN+FENOMENOLOGI&pg=PA24&printsec=frontcover
Noor, M., Indriati, G., & Elita, V. (2014). Pengalaman Ibu dalam Merawat Anak Autis Usia Sekolah. JOM PSIK, 1(2), 1.
Nurhidayah, I., Achadiyanti, D., Ghraha Ramdhanie, G., & Keperawatan, F. (2021). Pengetahuan Ibu Tentang Diet Gluten dan Kasein Pada Anak Penyandang Autis. Jurnal Perawat Indonesia, 5(1), 599–611.
Oduyemi, A. Y., Okafor, I. P., Eze, U. T., Akodu, B. A., & Roberts, A. A. (2021). Internalization of stigma among parents of children with autism spectrum disorder in Nigeria: a mixed method study. BMC Psychology, 9(1). https://doi.org/10.1186/s40359-021-00687-3
Parasian, A. T., & Ramadhana, M. R. (2021). Komunikasi Orang Tua Anak pada Penyandang Autisme (Studi Pada Orang Tua Pada Anak Penyandang Autisme di Yayasan Biruku Indonesia). E-Prociding of Management, 8(5), 6879–6887.
Roquette Viana, C., Caldeira, S., Lourenço, M., & Simões Figueiredo, A. (2021). Parenting of children with autism spectrum disorder: A grounded theory study. Healthcare (Switzerland), 9(7). https://doi.org/10.3390/healthcare9070872
Salman. (2014). Pola Komunikasi Orangtua dalam Mengatasi Kesulitan Berkomunikasi Anak Autis (Studi Pada Orangtua Anak Autis Di Sekolah Dasar Swasta Khusus Autis Anak Mandiri Jalan Kutilang No. 5 Sukajadi Kota Pekanbaru). Jom FISIP, 1(2), 1–13.
Shattnawi, K. K., Bani, Saeed, W. M., Al-Natour, A., Al-Hammouri, M. M., Al-Azzam, M., & Joseph, R. A. (2021). Parenting a Child With Autism Spectrum Disorder: Perspective of Jordanian Mothers. Journal of Transcultural Nursing, 32(5), 474–483. https://doi.org/10.1177/1043659620970634
Sinaga, T., & Pandede, J. (2021). Pengetahuan dan Sikap dengan Tindakan Ibu dalam Pola Makan pada Anak Autis. Jurnal Ilmiah STIKES Kendal, 11(1), 77–84.
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis : theory, method and research. In Sage Publishing.
Sudarmintawan, I., Luh, D., Karisma, M., & Suarya, S. (2018). Gambaran Penerimaan Ibu dengan Anak Autisme serta Penerapan terhadap Diet Bebas Gluten dan Kasein. Jurnal Psikologi Udayana, 5(2).
Upoma, T. F., Moonajilin, M. S., Rahman, M. E., & Ferdous, M. Z. (2020). Mothers initial challenges having children with autism spectrum disorders in Bangladesh. Bangladesh Journal of Medical Science, 19(2), 268–272. https://doi.org/10.3329/bjms.v19i2.45006
Wardani, D. S. (n.d.). Strategi Coping Orang Tua Menghadapi Anak Autis. Indigeneous, Jurnal Ilmiah Berkala Psikologi. www.bkkbn.go.id
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