Mapping The Needs Of Digital Information Services For Children With Special Needs
DOI:
https://doi.org/10.59585/ijhs.v3i2.719Keywords:
Down Syndrome, Digital Health, Digital Literacy, Parental Needs, Health Information AccessAbstract
Parents of children with Down syndrome face ongoing challenges in accessing relevant and trustworthy health information. With the increasing use of digital platforms, understanding parents’ needs and preferences is crucial for developing effective and inclusive digital health services. This study aims to map the digital health information needs of parents of children with Down syndrome, identify preferred information sources and digital platforms, and explore expectations regarding features of digital health applications. Methods use A descriptive quantitative study was conducted using a structured questionnaire distributed to parents of children with Down syndrome in Indonesia. Data were analyzed to assess patterns of digital information usage, platform preferences, and specific content and feature expectations. The results findings indicate that 83.6% of parents frequently seek digital health information, with WhatsApp groups (81.8%) and community networks like POTADS (80.0%) being the most accessed sources. Parents expressed a strong preference for digital tools that are free, user-friendly, and available in the local language. The most desired features in a health application include home-based therapy guidance (94.5%), educational videos (87.3%), parent forums (72.7%), and online consultation with healthcare professionals (67.3%). There is a high demand among parents for digital health platforms that offer accessible, relevant, and interactive content tailored to the needs of children with Down syndrome. Designing effective digital services requires collaboration across sectors and the integration of digital health literacy initiatives into existing family support systems to ensure equitable access and improved care outcomes.
Downloads
References
Akça, G., Sanri, A., Akca, U., 2024. Health literacy in parents of children with Down syndrome. Adv Ment Health Intellect Disabil 18, 88–97. https://doi.org/10.1108/AMHID-10-2023-0038
Akemoğlu, Y., Laroue, D., Kudesey, C., Stahlman, M., 2022. A Module-Based Telepractice Intervention for Parents of Children with Developmental Disabilities. J Autism Dev Disord 52, 5177–5190. https://doi.org/10.1007/s10803-022-05549-4
Albano Reis, B., 2024. Caring for caregivers: Co-designing a tool for multi-person care with informalcaregivers of disabled or chronically ill children.
Altinay, Z., Evcimen, E., Dagli, G., Kenebayeva, A., 2024. Building Sustainable Societies: The Role of Technology in Empowering Momtrepreneurs of Children with Special Needs. Societies 14. https://doi.org/10.3390/soc14110223
Altindağ Kumaş, Ö., Sardohan Yildirim, A.E., 2024. Exploring digital parenting awareness, self-efficacy and attitudes in families with special needs children. British Journal of Educational Technology 55, 2403–2418. https://doi.org/10.1111/bjet.13457
Ammari, T., Schoenebeck, S., 2015. Networked empowerment on facebook among parents of children with special needs, in: Conference on Human Factors in Computing Systems - Proceedings. pp. 2805–2814. https://doi.org/10.1145/2702123.2702324
Arabulan, S., Önçağ, R.Ö., Öcek, Z.A., 2025. Access to oral healthcare for children during the COVID-19 pandemic: a mixed-methods study in the Aegean region of Türkiye. BMC Oral Health 25, 680. https://doi.org/10.1186/s12903-025-06053-8
Arthurs, N., Tully, L., O’Malley, G., Browne, S., 2022. Usability and engagement testing of mHealth apps in paediatric obesity: a narrative review of current literature. Int J Environ Res Public Health 19, 1453.
Austin, D., May, J., Andrade, J., Jones, R., 2021. Delivering digital health: The barriers and facilitators to university-industry collaboration. Health Policy Technol 10, 104–110. https://doi.org/10.1016/j.hlpt.2020.10.003
Barrett, M., Combs, V., Su, J.G., Henderson, K., Tuffli, M., Simrall, G., Goeldi, S., Williams, M., Morgan, J., Tarini, P., Wojcik, O., Moyer, S., Saad, F., Chen, Y.-T., Liu, G., Jones-Ford, S., Chen, J., Renda, A., Roth, L., Van Sickle, D., Stempel, D., Hogg, C., Sublett, J., Brown, C.L., Smith, T., Fischer, G., 2018. AIR Louisville: Addressing asthma with technology, crowdsourcing, cross-sector collaboration, and policy. Health Aff 37, 525–534. https://doi.org/10.1377/hlthaff.2017.1315
Baumann, I., Jaks, R., Robin, D., Juvalta, S., Dratva, J., 2020. Parents’ health information seeking behaviour – does the child’s health status play a role? BMC Fam Pract 21. https://doi.org/10.1186/s12875-020-01342-3
Bingöler Pekcici, E.B., Özalp Akin, E., Akpinar, F., Hayran, G., Keleş, C., Yağbasan, B., Kurşun, N., Öztürk Ertem, İ., 2021. Family-centeredness of services for young children with down syndrome: An observational study from turkey. Turk J Med Sci 51, 246–255. https://doi.org/10.3906/sag-2009-76
Bird, M., Li, L., Ouellette, C., Hopkins, K., McGillion, M.H., Carter, N., 2019. Use of synchronous digital health technologies for the care of children with special health care needs and their families: scoping review. JMIR Pediatr Parent 2, e15106.
Bornman, J., Romski, M., King, M., Madima, V., Sevcik, R.A., 2020. Supporting Early Communication Skills of Children with Developmental Disorders in South Africa: Caregiver and Clinician Perspectives about Mobile Health Applications. Infants Young Child 33, 313–331. https://doi.org/10.1097/IYC.0000000000000177
Boursier, V., Gioia, F., Coppola, F., Schimmenti, A., 2022a. eHealth content-sharing and emotional support among Italian parents of children with Down Syndrome: A qualitative report. J Intellect Dev Disabil 47, 240–251. https://doi.org/10.3109/13668250.2021.1964153
Boursier, V., Gioia, F., Coppola, F., Schimmenti, A., 2022b. eHealth content-sharing and emotional support among Italian parents of children with Down Syndrome: A qualitative report. J Intellect Dev Disabil 47, 240–251. https://doi.org/10.3109/13668250.2021.1964153
Calle-Urgilez, K., Mena-Salcedo, M.F., Robles-Bykbaev, Y., Robles-Bykbaev, V., Carpio, H.T., 2018. Virtual learning environment for children with disabilities: A proposal based on MOODLE and content management with over the Top (OTT) technology, in: 2018 28th International Conference on Electronics, Communications and Computers, CONIELECOMP 2018. pp. 67–73. https://doi.org/10.1109/CONIELECOMP.2018.8327177
Canpolat, S., Parlak, M.E., Kurt Canpolat, E., Oz, E., 2024. Analyzing special needs reports for children: sociodemographic trends, diagnoses, and support areas over five years (2019–2024). Front Pediatr 12. https://doi.org/10.3389/fped.2024.1472553
Cardoso, L.B., Couto, P., Correia, P., Lopes, P.C., Fernandes, J.C.H., Fernandes, G.V.O., Veiga, N.J., 2024. Impact of digital innovations on health literacy applied to patients with special needs: a systematic review. Information 15, 663.
Chawla, J.K., Cooke, E., Miguel, M.C., Burgess, S., Staton, S., 2023. Parents’ experiences of having a child with down syndrome and sleep difficulties. Behavioral Sleep Medicine 21, 570–584.
Chua, J.Y.X., Shorey, S., 2022. Effectiveness of mobile application-based perinatal interventions in improving parenting outcomes: A systematic review. Midwifery 114. https://doi.org/10.1016/j.midw.2022.103457
Dorn, M., 2012. Pointer instead of a mouse click: Touch controls for different application areas. Mechatronik 120, 48–49.
Ford, K.L., Leiferman, J., Sobral, B., Bennett, J.K., Moore, S.L., Bull, S., 2021. “It depends:” a qualitative study on digital health academic-industry collaboration. Mhealth 7. https://doi.org/10.21037/mhealth-20-140
Frey, E., Bonfiglioli, C., Brunner, M., Frawley, J., 2022. Parents’ Use of Social Media as a Health Information Source for Their Children: A Scoping Review. Acad Pediatr 22, 526–539. https://doi.org/10.1016/j.acap.2021.12.006
Frey, E., Bonfiglioli, C., Frawley, J., 2023. Parents’ Use of Social Media for Health Information Before and After a Consultation With Health Care Professionals: Australian Cross-Sectional Study. JMIR Pediatr Parent 6. https://doi.org/10.2196/48012
Gakh, M., Coughenour, C., Assoumou, B., Strickler, E.C., Bungum, T.J., Pharr, J.R., Usufzy, P., McDonough, M., Williams Bungum, N., Meacham, M., 2024. What works when working together?: Cross-sector collaboration barriers & facilitators of a built environment Health Impact Assessment in Southern Nevada. Int J Qual Stud Health Well-being 19. https://doi.org/10.1080/17482631.2024.2427885
Gözetici, E., Dönmez, H., 2024. Digital education–supported telehealth intervention in mothers of children with tracheostomy: A quasi-experimental study. J Pediatr Nurs 77, e319–e326. https://doi.org/10.1016/j.pedn.2024.04.047
Ha, S., Han, J.H., Ahn, J., Lee, K., Heo, J., Choi, Y., Park, J.Y., Cheon, K.-A., 2022. Pilot study of a mobile application-based intervention to induce changes in neural activity in the frontal region and behaviors in children with attention deficit hyperactivity disorder and/or intellectual disability. J Psychiatr Res 146, 286–296. https://doi.org/10.1016/j.jpsychires.2021.11.018
Hooshmand, M., Foronda, C., 2018. Comparison of telemedicine to traditional face-to-face care for children with special needs: A quasiexperimental study. Telemedicine and e-Health 24, 433–441. https://doi.org/10.1089/tmj.2017.0116
Hui, C.Y., Abdulla, A., Ahmed, Z., Goel, H., Habib, G.M.M., Hock, T.T., Khandakr, P., Mahmood, H., Nautiyal, A., Nurmansyah, M., Panwar, S., Patil, R., Rinawan, F.R., Salim, H., Satav, A., Shah, J.N., Shukla, A., Tanim, C.Z.H., Balharry, D., Pinnock, H., 2022. Mapping national information and communication technology (ICT) infrastructure to the requirements of potential digital health interventions in low and middle-income countries. J Glob Health 12. https://doi.org/10.7189/JOGH.12.04094
Jeon, Y.E., Park, H.J., Suh, H.M., Kim, S.J., Jeon, E.J., 2024. Developing a Mobile Application Linking the Microsystems of Young Children with Delays or Disabilities: A Case Study and Guidelines, in: Communications in Computer and Information Science. pp. 49–56. https://doi.org/10.1007/978-3-031-61947-2_6
Jørgensen, K., Juhl, R., Hansen, M., Lerbæk, B., Frederiksen, J., Watson, E., Bjerrum, M., Karlsson, B., 2025. Perspectives of healthcare professionals on cross-sectoral collaboration between mental health centers and municipalities: A qualitative study. International Journal of Social Psychiatry 71, 694–704. https://doi.org/10.1177/00207640241299387
Karagianni, E., Drigas, A., 2022. Digital Games for down Syndrome Children’s Language and Cognitive Development. Technium Soc. Sci. J. 35, 162.
Kaslovsky, R., Sadof, M., 2010. How to best deliver care to children with chronic illness: Cystic fibrosis as a model. Curr Opin Pediatr 22, 822–828. https://doi.org/10.1097/MOP.0b013e32833faa5e
Kouri, P., Gröhn-Rissanen, M., 2009. The essential elements of caring when building innovative service in South-African township, in: Studies in Health Technology and Informatics. p. 726. https://doi.org/10.3233/978-1-60750-024-7-726
Liu, C., Shao, S., Liu, C., Bennett, G.G., Prvu Bettger, J., Yan, L.L., 2019. Academia–industry digital health collaborations: A cross-cultural analysis of barriers and facilitators. Digit Health 5. https://doi.org/10.1177/2055207619878627
Masdah, S., Mayarestya, N.P., Nuruniyah, N., Meilantika, A.D., Rizky, A., 2025. Education on Utilization of Online Queuing Application Based on Khanza Health Information System for Patients and Families. SPEKTA (Jurnal Pengabdian Kepada Masyarakat: Teknologi dan Aplikasi) 6, 1–20.
McAllister, J.W., Presler, E., Cooley, W.C., 2007. Practice-based care coordination: A medical home essential. Pediatrics 120, e723–e733. https://doi.org/10.1542/peds.2006-1684
Melvin, K., Meyer, C., Ryan, B., 2019. “We don’t know what we don’t know”: Providing information about communication to families of children with Down syndrome. Child Care Health Dev 45, 423–432. https://doi.org/10.1111/cch.12658
Ming, D.Y., Wong, W., Jones, K.A., Antonelli, R.C., Gujral, N., Gonzales, S., Rogers, U., Ratliff, W., Shah, N., King, H.A., 2023. Feasibility of Implementation of a Mobile Digital Personal Health Record to Coordinate Care for Children and Youth With Special Health Care Needs in Primary Care: Protocol for a Mixed Methods Study. JMIR Res Protoc 12. https://doi.org/10.2196/46847
Mörelius, E., Robinson, S., Arabiat, D., Whitehead, L., 2021. Digital Interventions to Improve Health Literacy among Parents of Children Aged 0 to 12 Years with a Health Condition: Systematic Review. J Med Internet Res 23. https://doi.org/10.2196/31665
Morley, D., Maher, A., Walsh, B., Dinning, T., Lloyd, D., Pratt, A., 2017. Making reasonable adjustments for pupils with special educational needs and disabilities: pre-service teachers’ perceptions of an online support resource. British Journal of Special Education 44, 203–219. https://doi.org/10.1111/1467-8578.12175
Murphy, A., Bailey, B., Arciuli, J., 2023. ABRACADABRA literacy instruction for children with Down syndrome via telepractice during COVID-19: A pilot study. British Journal of Educational Psychology 93, 333–352. https://doi.org/10.1111/bjep.12558
Nagelhout, E.S., Linder, L.A., Austin, T., Parsons, B.G., Scott, B., Gardner, E., Spraker-Perlman, H., Verma, A., Fluchel, M.N., Wu, Y.P., 2018. Social Media Use Among Parents and Caregivers of Children With Cancer. Journal of Pediatric Oncology Nursing 35, 399–405. https://doi.org/10.1177/1043454218795091
Napp, D., Conklin, J., 2022. Evaluation of the First Year of the Cross-Sector Innovation Initiative: Lessons Learned in Advancing Cross-Sector Alignment. Journal of Public Health Management and Practice 28, S187–S191. https://doi.org/10.1097/PHH.0000000000001480
Olpin, E., Hanson, C.L., Crandall, A., 2023. Influence of Social Media Uses and Gratifications on Family Health among U.S. Parents: A Cross-Sectional Study. Int J Environ Res Public Health 20. https://doi.org/10.3390/ijerph20031910
Ozalp Akin, E., Akbas, A., Atasoy, S.C., Kanatli, M.C., Ince Acici, S., Mustafayev, R., Karaaslan, B.T., Ertem, H.D., Bingoler Pekcici, B., Ertem, I., 2022. Applicability of the Guide for Monitoring Child Development as a Telehealth Delivered Intervention During the Pandemic. Front Pediatr 10. https://doi.org/10.3389/fped.2022.884779
Pretorius, K., Johnson, K.E., Rew, L., 2019. An Integrative Review: Understanding Parental Use of Social Media to Influence Infant and Child Health. Matern Child Health J 23, 1360–1370. https://doi.org/10.1007/s10995-019-02781-w
Shahid, N.M.I., Law, E.L.-C., Verdezoto, N., 2022. Technology-enhanced support for children with Down Syndrome: A systematic literature review. Int J Child Comput Interact 31. https://doi.org/10.1016/j.ijcci.2021.100340
Shaqiri, A.B., Sofiu, V., 2024a. Children with Down syndrome and health management information system. International Journal of Advanced and Applied Sciences 11, 103–110. https://doi.org/10.21833/ijaas.2024.05.011
Shaqiri, A.B., Sofiu, V., 2024b. Children with Down syndrome and health management information system. International Journal of Advanced and Applied Sciences 11, 103–110. https://doi.org/10.21833/ijaas.2024.05.011
Siyam, N., Abdallah, S., 2022. A Pilot Study Investigating the Use of Mobile Technology for Coordinating Educational Plans in Inclusive Settings. Journal of Special Education Technology 37, 455–468. https://doi.org/10.1177/01626434211033581
Slaná, M., Letovancová, K.M., Dobríková, P., Hromková, M., 2020. Research into the needs of families who have children with down syndrome (In the Slovak framework); [Výskum potrieb rodín s dieťaťom s downovým syndrómom v kontexte Slovenska]. Kontakt 22, 60 – 67. https://doi.org/10.32725/kont.2020.005
Suckiel, S.A., Kelly, N.R., Odgis, J.A., Gallagher, K.M., Sebastin, M., Bonini, K.E., Marathe, P.N., Brown, K., Di Biase, M., Ramos, M.A., Rodriguez, J.E., Scarimbolo, L., Insel, B.J., Ferar, K.D.M., Zinberg, R.E., Diaz, G.A., Greally, J.M., Abul-Husn, N.S., Bauman, L.J., Gelb, B.D., Horowitz, C.R., Wasserstein, M.P., Kenny, E.E., 2023. The NYCKidSeq randomized controlled trial: Impact of GUÍA digitally enhanced genetic results disclosure in diverse families. Am J Hum Genet 110, 2029–2041. https://doi.org/10.1016/j.ajhg.2023.10.016
Szlamka, Z., Ahmed, I., Genovesi, E., Kinfe, M., Hoekstra, R.A., Hanlon, C., 2023. Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: a qualitative study. BMC Health Serv Res 23. https://doi.org/10.1186/s12913-023-10428-4
Tscharn, R., Schaper, P., Sauerstein, J., Steinke, S., Stiersdorfer, S., Scheller, C., Huynh, H.T., 2016. User Experience of 3D Map Navigation – Bare-Hand Interaction or Touchable Device?, in: Lecture Notes in Informatics (LNI), Proceedings - Series of the Gesellschaft Fur Informatik (GI). https://doi.org/10.18420/muc2016-mci-0167
Wagner, L., Corona, L., Khan, N., Hooper, M., Dixon, A., Lavanderos, A.M., Zheng, Z., Sarkar, N., Sarkar, N., Warren, Z., 2023. Development of an App for Tracking Family Engagement With Early Intervention Services: Focus Groups and Pilot Evaluation Study. JMIR Hum Factors 10. https://doi.org/10.2196/45957
Walsh, B., Dinning, T., Money, J., Money, S., Maher, A., 2018. Supporting reasonable adjustments for learners with disabilities in physical education: An investigation into teacher’s perceptions of one online tool. Cogent Education 5, 1–11. https://doi.org/10.1080/2331186X.2018.1525828
Waring, M.E., Blackman Carr, L.T., Heersping, G.E., 2023. Social Media Use Among Parents and Women of Childbearing Age in the US. Prev Chronic Dis 20. https://doi.org/10.5888/pcd20.220194
Wrona, K.J., Albrecht, J., Schulenkorf, T., Bruland, D., 2025. Promoting digital health literacy in disadvantaged life situations through community-oriented approaches: results of a workshop; [Förderung digitaler Gesundheitskompetenz in benachteiligten Lebenslagen durch Community-orientierte Ansätze: Ergebnisse eines Workshops]. Pravention und Gesundheitsforderung. https://doi.org/10.1007/s11553-024-01186-0
Wu, W., 2025. China’s health service collaboration in the Guangdong-Hong Kong-Macao Greater Bay Area: barriers and next steps. Front Public Health 13. https://doi.org/10.3389/fpubh.2025.1442328
Zhou, Y., Zhou, Y., Xu, D., Min, J., Du, Y., Duan, Q., Bao, W., Sun, Y., Xi, H., Wang, C., Bischof, E., 2024. Practice Standards in International Medical Departments of Public Academic Hospitals in China: Cross-Sectional Study. JMIR Form Res 8. https://doi.org/10.2196/53898
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2025 Siti Masdah, Ayu Diana Meilantika, Cau Kim Jiu, Amelyadi Amelyadi, Sri Ariyanti
This work is licensed under a Creative Commons Attribution 4.0 International License.
