Main Article Content
Abstract
Latar belakang: Peran orang tua menjadi bertambah ketika anaknya mengalami down syndrome. Penelitian ini bertujuan untuk mengeksplorasi lebih dalam pengalaman orang tua dalam melatih kemandirian saat melakukan aktivitas sehari-hari pada anaknya dengan down syndrome di Yayasan Tri Asih Jakarta. Metode: Metode kualitatif dengan pendekatan fenomenologi deskriptif. Cara pengumpulan data dengan teknik wawancara terstruktur, menggunakan tape recorder, field note, alat tulis dan pedoman wawancara. Teknik analisis data menggunakan analisis Colaizzi. Jumlah partisipan dalam penelitian ini sebanyak 8 partisipan. Hasil penelitian: diperoleh empat tema utama terkait pengalaman orangtua dalam melatih kemandirian anak dengan down syndrome, yaitu respon emosional orang tua, harapan orang tua, peran orangtua, dan perubahan yang terjadi pada anak. Rekomendasi: peneliti menyarankan orang tua sebaiknya merawat anak sendiri agar perkembangan anak down syndrome lebih maksimal dan orang tua dapat mengetahui sejauh mana perkembangan yang sudah di alami anak
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References
- Adisty Archi Artamevia Putri, Badrul Munif, Fransiska Erna D, Aulia Amalia, Ayu Ratna Ningrum, Arum Fatmawati, Ajeng Sri Rejeki, Clarisa Artiga Wardani, Awaliah Tri W, Derisca Tiara Patricia, and Al Waridlatul Na’imah. 2021. “Pengalaman Orang Tua Dalam Merawat Anak Berkebutuhan Khusus : Literature Review.” Professional Health Journal 3(1):19–25. doi: 10.54832/phj.v3i1.171.
- Albedeiwi, M. S., Alshammari, S. N., & Aluzeib, A. A. 2022. “Emotional Burden and Copying Styles in Parents of Children with Down Syndrome.” Journal of University Studies for Inclusive Research, 8(19), 3812-37.
- Amelia, R. 2023. “Strategi Coping Stres Orang Tua Yang Memiliki Anak Down Syndrome.” (Doctoral Dissertation, Universitas Medan Area).
- Barisnikov, K., Thomasson, M., Stutzmann, J., & Lejeune, F. 2020. “Relation between Processing Facial Identity and Emotional Expression in Typically Developing School-Age Children and Those with Down Syndrome.” Applied Neuropsychology: Child, 9(2), 179-192.
- Capone, G., Stephens, M., Santoro, S., Chicoine, B., Bulova, P., Peterson, M., ... & Down Syndrome Medical Interest Group (DSMIG‐USA) Adult Health Workgroup. 2020. “Co‐occurring Medical Conditions in Adults with Down Syndrome: A Systematic Review toward the Development of Health Care Guidelines. Part II.” American Journal of Medical Genetics Part A, 182(7), 1832-1845.
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- Van den Eijnde, L., & De Villiers, L. 2021. “Parental Experiences on the Inclusion of Their Child with down Syndrome in a Mainstream School.” (Doctoral Dissertation, Stellenbosch: Stellenbosch University).
- Gashmard, Roqayeh, Fazlollah Ahmadi, and Sima Mohammad Khan Kermanshahi. 2020. “Coping Strategies Adopted by Iranian Families of Children with Down Syndrome: A Qualitative Study.” Medicine (United States) 99(28):E20753. doi: 10.1097/MD.0000000000020753.
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- Kamil, Nurhusna, Zayyana Zahrotul Fitri, Homsani Nasution, and Khamim Zarkasih Putro. 2023. “Memahami Anak Berkebutuhan Khusus: Down Syndrome.” Murhum : Jurnal Pendidikan Anak Usia Dini 4(2):190–98. doi: 10.37985/murhum.v4i2.179.
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- Lee, Anna, Kathleen Knafl, and Marcia Van Riper. 2021. “Family Variables and Quality of Life in Children with down Syndrome: A Scoping Review.” International Journal of Environmental Research and Public Health 18(2):1–30. doi: 10.3390/ijerph18020419.
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- Rahmi, Khalida, and Ulfa Suryani. 2022. “Deskripsi Pelaksanaan Program Intervensi Dini Pada Pemerolehan Bahasa Pertama Anak Down Syndrome Melalui Penerapan Konsep Family Quality of Life.” Journal of Chemical Information and Modeling 5(9):1689–99.
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- Santoro, S. L., Cabrera, M. J., Co, J. P. T., Constantine, M., Haugen, K., Krell, K., ... & Donelan, K. 2023. “Health in Down Syndrome: Creating a Conceptual Model.” Journal of Intellectual Disability Research, 67(4), 323-351.
- Shaw, D., Bar, S., & Champion, J. D. 2021. “The Impact of Developmental Behavioral Pediatrics in a Population of Children with Down Syndrome.” Journal of Pediatric Nursing, 57, 38-42.
- Supiaty, Upik, Yuly Peristiowati, Saiful Anwar, and East Java. 2022. “The Effect of Educational Parenting on Improvement Parenting Efficacy of Parents and Their Effects on the Language Development of Children With Down Syndrome.” Journal for Quality in Public Health 6(1):305–15.
- Victor, Ivena Nathania, Hartanti Hartanti, and Mary Philia Elisabeth. 2021. “The Dynamics of Sibling Relationships with a down Syndrome Child.” KONSELI : Jurnal Bimbingan Dan Konseling (E-Journal) 8(1):99–106. doi: 10.24042/kons.v8i1.8363.
References
Adisty Archi Artamevia Putri, Badrul Munif, Fransiska Erna D, Aulia Amalia, Ayu Ratna Ningrum, Arum Fatmawati, Ajeng Sri Rejeki, Clarisa Artiga Wardani, Awaliah Tri W, Derisca Tiara Patricia, and Al Waridlatul Na’imah. 2021. “Pengalaman Orang Tua Dalam Merawat Anak Berkebutuhan Khusus : Literature Review.” Professional Health Journal 3(1):19–25. doi: 10.54832/phj.v3i1.171.
Albedeiwi, M. S., Alshammari, S. N., & Aluzeib, A. A. 2022. “Emotional Burden and Copying Styles in Parents of Children with Down Syndrome.” Journal of University Studies for Inclusive Research, 8(19), 3812-37.
Amelia, R. 2023. “Strategi Coping Stres Orang Tua Yang Memiliki Anak Down Syndrome.” (Doctoral Dissertation, Universitas Medan Area).
Barisnikov, K., Thomasson, M., Stutzmann, J., & Lejeune, F. 2020. “Relation between Processing Facial Identity and Emotional Expression in Typically Developing School-Age Children and Those with Down Syndrome.” Applied Neuropsychology: Child, 9(2), 179-192.
Capone, G., Stephens, M., Santoro, S., Chicoine, B., Bulova, P., Peterson, M., ... & Down Syndrome Medical Interest Group (DSMIG‐USA) Adult Health Workgroup. 2020. “Co‐occurring Medical Conditions in Adults with Down Syndrome: A Systematic Review toward the Development of Health Care Guidelines. Part II.” American Journal of Medical Genetics Part A, 182(7), 1832-1845.
Clark, L., Canary, H. E., McDougle, K., Perkins, R., Tadesse, R., & Holton, A. E. 2020. “Family Sense-Making after a Down Syndrome Diagnosis.” Qualitative Health Research, 30(12), 1783-1797.
Dewi, N. N., F. k., surmiasih, & Putri, R. H. 2019. “Pengalaman Orang Tua Terhadap Toilet Training Pada Anak Down Syndrome DI SLB NegeriI Pringsewu Lampung.” Jurnal Kesehatan Masyarakat Khatulistiwa.
Dilip R. Patel, Donald E. Greydanus, Hatim A. Omar, Joav Merrick. 2015. Neurodevelopmental Disabilities: Clinical Care for Children and Young Adults. Germany: Springer Netherlands.
Van den Eijnde, L., & De Villiers, L. 2021. “Parental Experiences on the Inclusion of Their Child with down Syndrome in a Mainstream School.” (Doctoral Dissertation, Stellenbosch: Stellenbosch University).
Gashmard, Roqayeh, Fazlollah Ahmadi, and Sima Mohammad Khan Kermanshahi. 2020. “Coping Strategies Adopted by Iranian Families of Children with Down Syndrome: A Qualitative Study.” Medicine (United States) 99(28):E20753. doi: 10.1097/MD.0000000000020753.
Hockenberry, M. .., and D. Wilson. 2015. Wong’s Nursing Care of Infants and Children. Canada: Elsevier.
Hockenberry, M. .., D. Wilson, and C. Rodgers. 2017. Wong’s Essentials of Pediatrics Nursing. Canada: Elsevier.
Kamil, Nurhusna, Zayyana Zahrotul Fitri, Homsani Nasution, and Khamim Zarkasih Putro. 2023. “Memahami Anak Berkebutuhan Khusus: Down Syndrome.” Murhum : Jurnal Pendidikan Anak Usia Dini 4(2):190–98. doi: 10.37985/murhum.v4i2.179.
Khodijah, Rizkah, Qonitatul Wahidah, Dina Sopariah, and Lathipah Hasanah. 2022. “Pengalaman Orangtua Dalam Merawat Anak Down Syndrom : Literatur Review.” Jurnal Pelita PAUD 6(2):278–86. doi: 10.33222/pelitapaud.v6i2.1948.
Lee, Anna, Kathleen Knafl, and Marcia Van Riper. 2021. “Family Variables and Quality of Life in Children with down Syndrome: A Scoping Review.” International Journal of Environmental Research and Public Health 18(2):1–30. doi: 10.3390/ijerph18020419.
Lia Kartika, Vernando Y Lameky, Erna Julianti, Anita Apriliawati Yulian Heiwer Matongka, Sunarmi, and Andria Pragholapati. 2023. Buku Asuhan Keperawatan Anak Kebutuhan Khusus. Penerbit Yayasan Kita Menulis.
Nur, M., Sari, N., & Surya, H. (2023). C. 2023. Coping Stress Guru PAUD: Penanganan Anak Berkebutuhan Khusus Di Sekolah PAUD Reguler. Sada Kurni.
Pradnya, Kadek Pradnya, and I. Gusti Ayu Putu Wulan Budisetyani. 2020. “Penerimaan Ibu Terhadap Kondisi Anak Down Syndrome.” Jurnal Psikologi Udayana 28–36.
Rahmi, Khalida, and Ulfa Suryani. 2022. “Deskripsi Pelaksanaan Program Intervensi Dini Pada Pemerolehan Bahasa Pertama Anak Down Syndrome Melalui Penerapan Konsep Family Quality of Life.” Journal of Chemical Information and Modeling 5(9):1689–99.
Riskesdas. 2018. “Laporan Provinsi Kalimantan Barat Riskesdas 2018.” Laporan Riskesdas Nasional 2018 493.
Santoro, S. L., Cabrera, M. J., Co, J. P. T., Constantine, M., Haugen, K., Krell, K., ... & Donelan, K. 2023. “Health in Down Syndrome: Creating a Conceptual Model.” Journal of Intellectual Disability Research, 67(4), 323-351.
Shaw, D., Bar, S., & Champion, J. D. 2021. “The Impact of Developmental Behavioral Pediatrics in a Population of Children with Down Syndrome.” Journal of Pediatric Nursing, 57, 38-42.
Supiaty, Upik, Yuly Peristiowati, Saiful Anwar, and East Java. 2022. “The Effect of Educational Parenting on Improvement Parenting Efficacy of Parents and Their Effects on the Language Development of Children With Down Syndrome.” Journal for Quality in Public Health 6(1):305–15.
Victor, Ivena Nathania, Hartanti Hartanti, and Mary Philia Elisabeth. 2021. “The Dynamics of Sibling Relationships with a down Syndrome Child.” KONSELI : Jurnal Bimbingan Dan Konseling (E-Journal) 8(1):99–106. doi: 10.24042/kons.v8i1.8363.