Other Titles
Exploring Parental Uncertainty and Information Needs for Children with Developmental Disabilities: A Qualitative Study [Title Slide]
Abstract
Background: Parents of children with developmental disabilities experience persistent and multifaceted uncertainty, starting with the initial recognition of developmental issues and continuing throughout their child’s life (Chao et al., 2018; Sartore et al., 2021; Scherr et al., 2020). Understanding what information can reduce uncertainty is crucial for alleviating stress and improving the well-being of both parents and their children with developmental disabilities (Smythe et al., 2021).
Aim: This qualitative study aimed to address the gap in identifying the most effective information for reducing parental uncertainty across different life stages of such children.
Method: This study employed a qualitative design. In-depth interviews were conducted with 19 parents of children with developmental disabilities, ranging from early childhood to late adolescence (ages 2 to 16), in South Korea from July 15 to September 18, 2023. Conventional content analysis identified the categories, main themes, and subthemes.
Results: Three categories, six main themes, and 12 subthemes were identified. The three categories and their corresponding six main themes are as follows. First, information needs across the life cycle, which includes three themes: infancy and toddlerhood (trial and error in early detection and intervention), school-age (challenges throughout the educational journey), and adolescence (difficulties in transitioning to adulthood). Second, struggles with the healthcare support system, encompassing two themes—the need for integration of information resources and the requirement for specialized nursing services. Lastly, striving for normalization, which consists of one theme that focuses on embracing persistent uncertainty in the face of ongoing challenges.
Conclusions: Nurses are uniquely positioned to identify developmental issues and coordinate timely and appropriate interventions (Douglas et al., 2017). Our findings provide foundational data for developing support programs tailored to the needs of parents of children with developmental disabilities. Such programs can help reduce parental uncertainty, thereby improving parental and child health outcomes.
Notes
References:
Chao, K. Y., Chang, H. L., Chin, W. C., Li, H. M., & Chen, S. H. (2018). How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis. Autism, 22(4), 388–400. https://doi.org/10.1177/1362361316680915
Douglas, T., Redley, B., & Ottmann, G. (2017). The need to know: The information needs of parents of infants with an intellectual disability—A qualitative study. Journal of Advanced Nursing, 73(11), 2600–2608. https://doi.org/10.1111/jan.13321
Sartore, G. M., Pourliakas, A., & Lagioia, V. (2021). Peer support interventions for parents and carers of children with complex needs. Cochrane Database of Systematic Reviews(12). https://doi.org/10.1002/14651858.CD010618.pub2
Scherr, C. L., Getachew-Smith, H. J., Sudec, L., Brooks, J. J., & Roberts, M. (2020). Parents’ sensemaking processes in the identification of developmental delays and engagement with early intervention services. Social Science & Medicine, 255, 112941. https://doi.org/10.1016/j.socscimed.2020.112941
Smythe, T., Zuurmond, M., Tann, C. J., Gladstone, M., & Kuper, H. (2021). Early intervention for children with developmental disabilities in low- and middle-income countries: The case for action. International Health, 13(3), 222–231. https://doi.org/10.1093/inthealth/ihaa044
Sigma Membership
Lambda Alpha at-Large
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Other
Research Approach
Qualitative Research
Keywords:
Health Equity or Social Determinants of Health, Primary Care, Interprofessional, Interdisciplinary, Promoting Clinical Outcomes, Developmentally Disabled Children, Stress and Coping, Parental Caregiver Well-being
Recommended Citation
Choi, Heejung, "Parental Uncertainty and Information Needs for Children with Developmental Disabilities" (2025). Biennial Convention (CONV). 165.
https://www.sigmarepository.org/convention/2025/presentations_2025/165
Conference Name
48th Biennial Convention
Conference Host
Sigma Theta Tau International
Conference Location
Indianapolis, Indiana, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2025-12-04
Parental Uncertainty and Information Needs for Children with Developmental Disabilities
Indianapolis, Indiana, USA
Background: Parents of children with developmental disabilities experience persistent and multifaceted uncertainty, starting with the initial recognition of developmental issues and continuing throughout their child’s life (Chao et al., 2018; Sartore et al., 2021; Scherr et al., 2020). Understanding what information can reduce uncertainty is crucial for alleviating stress and improving the well-being of both parents and their children with developmental disabilities (Smythe et al., 2021).
Aim: This qualitative study aimed to address the gap in identifying the most effective information for reducing parental uncertainty across different life stages of such children.
Method: This study employed a qualitative design. In-depth interviews were conducted with 19 parents of children with developmental disabilities, ranging from early childhood to late adolescence (ages 2 to 16), in South Korea from July 15 to September 18, 2023. Conventional content analysis identified the categories, main themes, and subthemes.
Results: Three categories, six main themes, and 12 subthemes were identified. The three categories and their corresponding six main themes are as follows. First, information needs across the life cycle, which includes three themes: infancy and toddlerhood (trial and error in early detection and intervention), school-age (challenges throughout the educational journey), and adolescence (difficulties in transitioning to adulthood). Second, struggles with the healthcare support system, encompassing two themes—the need for integration of information resources and the requirement for specialized nursing services. Lastly, striving for normalization, which consists of one theme that focuses on embracing persistent uncertainty in the face of ongoing challenges.
Conclusions: Nurses are uniquely positioned to identify developmental issues and coordinate timely and appropriate interventions (Douglas et al., 2017). Our findings provide foundational data for developing support programs tailored to the needs of parents of children with developmental disabilities. Such programs can help reduce parental uncertainty, thereby improving parental and child health outcomes.
Description
Lifelong uncertainty challenges parents of children with developmental disabilities, emphasizing the need to address specific information needs. This study identifies these needs across infancy, school-age, and adolescence, highlighting healthcare support and normalization as key concerns. These findings provide insights for tailored support programs to reduce parental uncertainty and improve outcomes for families.