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Exploring Parents' and Carers' Views About the use of Digital Tools in Neurodevelopmental Assessment
Anne McFadyen1, Michael Saiger1, Donna Jamieson1
1Centre for Developmental Adversity and Resilience (CeDAR), University of Glasgow, Glasgow, UK.
Insights
Parents of neurodivergent children support digital tools for neurodevelopmental (ND) assessments. These tools must be safe, accessible, and inclusive to improve fragmented services and streamline care.
Area of Science:
- Pediatric Neurodevelopmental Disorders
- Health Informatics
- Digital Health
Background:
- Children's services face challenges meeting rising demand for neurodevelopmental (ND) assessment and support.
- Early identification of neurodevelopmental needs is crucial for tailored service delivery.
- Increased waiting lists necessitate exploring innovative solutions like digital tools for efficiency.
Purpose of the Study:
- To explore parents'/carers' views on introducing digital assessment tools for neurodivergent children.
- To understand perspectives on data governance related to digital neurodevelopmental assessment tools.
- To assess the acceptability and potential benefits of digital tools in ND assessment pathways.
Main Methods:
- Qualitative study exploring the experiences of parents/carers of neurodivergent children.
- Investigated participants' views on digital assessment tools and data governance.
- Included individuals with lived experience of navigating ND assessment services.
Main Results:
- Participants reported fragmented service delivery and welcomed a holistic, streamlined approach.
- Trust in NHS data security was high, but demands for transparency and sensitivity were noted.
- Digital tools were welcomed, with emphasis on crucial accessibility considerations.
Conclusions:
- Parents and carers are receptive to digital tools for child neurodevelopmental assessment.
- Effectiveness of digital tools hinges on safety, accessibility, and inclusivity.
- Digital solutions offer a promising avenue for a more holistic and efficient approach to understanding neurodivergence.
Abstract:
IntroductionChildren's services are struggling to meet increasing demand for neurodevelopmental (ND) assessment and support. Early identification enhances the appropriate delivery of services tailored to meet the needs of children and families. In the face of increased waiting lists, the integration of digital tools may improve efficiency, but only if they are acceptable to the people using them.MethodsWe qualitatively explored the views of parents/carers of neurodivergent children about the potential introduction of digital assessment tools and related data governance. All had lived experience of navigating ND assessment services with their child.ResultsParticipants' experience of the assessment process was of fragmented service delivery, and they welcomed the possibility of a holistic, streamlined approach. Most participants trusted the NHS to keep their information safe but sought greater transparency and sensitivity, about both digital and non-digital data. The introduction of digital tools was welcomed, but participants highlighted accessibility considerations.ConclusionParents and carers are open to the use of digital tools to support child ND assessment, but to be effective they must be safe, accessible and inclusive. They valued the prospect of a holistic efficient approach to understanding neurodivergence.
