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All Journal Jurnal Pengabdian Kepada Masyarakat (Indonesian Journal of Community Engagement) Martabe : Jurnal Pengabdian Kepada Masyarakat Ensiklopedia of Journal PengabdianMu: Jurnal Ilmiah Pengabdian kepada Masyarakat Jurnal Ners Jurnal Abdi Insani Community Development Journal: Jurnal Pengabdian Masyarakat SPEKTA (Jurnal Pengabdian Kepada Masyarakat : Teknologi dan Aplikasi) Prima Abdika: Jurnal Pengabdian Masyarakat Society: Jurnal Pengabdian Masyarakat Berita Kedokteran Masyarakat Jurnal Keperawatan dan Kesehatan (JKK) International Journal of Health Sciences Jurnal Lentera Kesehatan Masyarakat (JLKM)
Siti Masdah
Institut Teknologi Dan Kesehatan Muhammadiyah Kalimantan Barat, Pontianak, Indonesia
Agriculture, Biological Sciences & Forestry Arts Humanities Civil Engineering, Building, Construction & Architecture Computer Science & IT Control & Systems Engineering Decision Sciences, Operations Research & Management Dentistry Earth & Planetary Sciences Economics, Econometrics & Finance Education Energy Engineering Environmental Science Health Professions Industrial & Manufacturing Engineering Languange, Linguistic, Communication & Media Law, Crime, Criminology & Criminal Justice Materials Science & Nanotechnology Mathematics Medicine & Pharmacology Neuroscience Nursing Public Health Social Sciences Other

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SUPPORT FOR DOWN SYNDROME FAMILIES: NEEDS, EXPECTATIONS, AND FEATURE IDEAS Masdah, Siti; Meilantika, Ayu Diana; Ramadhaniyati, Ramadhaniyati; Maufiroh, Maufiroh; Syabilla, Aulia Putri; Alya Pratama, Natasya Putri
Jurnal Keperawatan dan Kesehatan Vol 16 No 2 (2025): Jurnal Keperawatan dan Kesehatan
Publisher : Sekolah Tinggi Ilmu Keperawatan Muhammadiyah Pontianak

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.54630/jk2.v16i2.587

Abstract

Families are the primary caregivers of children with Down syndrome (DS) and often face complex challenges involving medical, emotional, social, and economic aspects. These challenges require support systems that go beyond clinical care and address psychosocial and practical family needs. This study aimed to identify the needs, expectations, and innovative feature ideas desired by families of children with DS as a foundation for developing comprehensive and sustainable family support systems. This study employed a descriptive mixed-method design, integrating quantitative and qualitative approaches. A total of 156 parents or primary caregivers of children with DS in Indonesia participated through an online survey. Quantitative data were analyzed descriptively, while qualitative data were analyzed thematically to explore family experiences and expectations regarding support features. The findings revealed that the main family needs included educational support (42.95%), parental guidance (28.21%), and emotional and social support (17.31%). Families also suggested various digital-based support features, such as interactive educational modules, online consultations with health professionals, therapy activity scheduling tools, parent community forums, and motivational content. These features were perceived as helpful in improving knowledge, caregiving skills, and emotional well-being. In conclusion, support for families of children with DS should adopt a comprehensive, family-centered, and participatory care model. The utilization of digital technology is considered an effective medium for empowerment, communication, and access to support. This approach is expected to strengthen family resilience, enhance the quality of life of children with DS, and promote inclusive and sustainable family support systems.
Co-Authors Abd Kadir, Abd Abdul Wahab Agustini, Fitri Almumtahanah, Almumtahanah Alya Pratama, Natasya Putri Amelyadi, Amelyadi Annisa Rahmawati arpandjam'an, arpandjam'an Awal, Muhammad Ayu Diana Meilantika Baehaqi Bhakti, Wida Kuswida Cau Kim Jiu Deviarbi Sakke Tira Diana Meilantika, Ayu Djaswadi Dasuki Dorce Sisfiani Sarimin Erin Sastrini, Yovita Fitriagustiani, Fitriagustiani Janah, Esti Nur Kawuryan, Uji Lukita, Yenni Maufiroh, Maufiroh Mayarestya, Nita Putriasti Nisaul Khairillah, Yuyun Nuruniyah, Nuruniyah Pertiwi, Gracia Herni Putriasti Mayarestya, Nita Rahma Yulis Ramadhaniyati, Ramadhaniyati Risky, Ayu Rizky, Ayu Rondonuwu, Rolly Harvie Stevan Salsabila, Naifa Sri Ariyanti Sri Hartati Suradi Efendi Sutrisno, Sutrisno Syabilla, Aulia Putri tri wahyuni Yuliany Rahmawati, Endah Yulita, Hendra