ArticleBMC health services research2025
Supporting parents to care for a child with neurodevelopmental disability: exploring parents' perspectives and experiences of a health service.
Article in BMC health services research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
1 citing paper in PubMed.
- Issues navigating the healthcare delivery system among caregivers of children and youth with special healthcare needs: a qualitative study.BMC health services research · 2026Article
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHealth services play an essential role in supporting children with neurodevelopmental disability (NDD) and their families. Previous research shows parents need information, practical assistance with navigating systems and services, and holistic family-centred support, when caring for a child with disability. This article examines parents’ perspectives and experiences of the information and support provided to them to assist their care of their child with NDD, at the Neurodevelopment and Disability Clinic in Melbourne, Australia.
methodsAn exploratory, cross-sectional study was conducted with 90 parents attending the clinic, using a survey with multiple choice and open-ended questions. Participants indicated whether they received, and how satisfied they were with 12 types of information and support for caring for a child with NDD. Subsequently, they described aspects of information/support that were helpful, not helpful, or mixed. Data was analysed using descriptive quantitative analysis and qualitative content analysis.
resultsAmongst the 12 types of supports measured, participants were most likely to have received education about the child’s diagnosis and condition, supports relating to understanding the child’s diagnosis/condition, managing the child’s care, and obtaining medication. Participants were least likely to have received information about supporting siblings of a child with disability, assistance with financial and community resources, and social support with other families. Participants particularly valued information about the child’s condition, development, and care needs; support with accessing and coordinating hospital and community-based services; and support for family members. The qualities of health professionals and their approaches to delivering information and support shaped parents’ perception and experience of the healthcare they receive.
conclusionsFindings highlight how areas for health service and system development: providing the right information at the right time; practical assistance with accessing supports and services; family-centred support; and the perceived qualities, knowledge, and expertise of health professionals. Health professionals play a crucial and multi-faceted role in supporting children and family life with NDD.
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