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Exploring parental uncertainty and information needs for children with developmental disabilities: A qualitative
1College of Nursing, Korea University, 145, Anam-ro, Seongbuk-gu, Seoul, Republic of Korea.
Journal of Pediatric Nursing
|June 27, 2025
Summary
Parents of children with developmental disabilities need specific information to reduce uncertainty and stress. Nurse-led interventions can improve care coordination and outcomes for families navigating developmental challenges.
Area of Science:
- Developmental Disabilities Research
- Parental Well-being Studies
- Healthcare Information Dissemination
Background:
- Parental uncertainty significantly impacts the well-being of children with developmental disabilities.
- Effective information provision is key to stress reduction for these families.
Purpose of the Study:
- To identify specific information types that reduce parental uncertainty.
- To understand these needs across developmental stages of children with disabilities.
Main Methods:
- Qualitative study involving in-depth interviews with 19 parents.
- Participants' children ranged from 2 to 16 years old.
- Conventional content analysis to identify themes and subthemes.
Main Results:
- Identified three categories, six themes, and 12 subthemes regarding parental information needs.
- Themes include life-cycle information needs (infancy, school-age, adolescence), healthcare system struggles, and striving for normalization.
- Key needs involve early detection, educational support, transition to adulthood, integrated resources, and specialized nursing services.
Conclusions:
- Findings offer data for nurse-led, information-based interventions.
- Interventions can improve care coordination and support advocacy programs.
- Highlights the need for policy support in hospital protocols and community infrastructure for coordinated care.
Keywords:
Developmental disabilitiesInformation sourcesNurse-led interventionsQualitative researchUncertaintyMore Related Videos
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