# Supporting parents to care for a child with neurodevelopmental disability: exploring parents’ perspectives and experiences of a health service

## TL;DR

This study explores how parents of children with neurodevelopmental disabilities in Melbourne perceive the information and support they receive from a health clinic.

## Contribution

The study identifies gaps in health services and highlights the importance of timely, practical, and family-centered support for parents of children with NDD.

## Key findings

- Parents most often received information about diagnosis and care management but less about sibling support and financial resources.
- Parents valued information on child development and practical help in accessing services.
- Health professionals' qualities and communication styles significantly influenced parents' experiences.

## Abstract

Health 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.

An 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.

Amongst 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.

Findings 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.

The online version contains supplementary material available at 10.1186/s12913-025-13899-9.