Bringing healthcare professionals and families together in the care of children with neurodisability
Professor Denise McDonald, Clinical Associate Professor of Paediatrics, School of Medicine, Trinity College Dublin and Consultant Paediatrician, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and Enable Ireland is the recipient of one of four Irish Research Council New Foundations 2022 awards for the school.
Parents of children with neurodisability (disabilities resulting from congenital or acquired long-term conditions) become experts by experience in their child’s condition, symptoms and solutions to their day-to-day challenges. Health care professionals have a wealth of training, clinical experience, and knowledge in managing healthcare needs.
Our current practice is often void of mutual respect between these experiences and expertise. This is particularly apparent at times where shared decision making is required to provide the best care for a child in cases where there is no single best decision that can be applied.
There are few opportunities for families and professionals to come together in a context where there is not an immediate decision to be made or care to be decided upon. Furthermore, there are few opportunities for the power imbalances that occur in systems to be redressed, and families and professionals to meet each other on an equal footing.
A new project: Severe neurological imPairment in IREland: families and professionals Sharing Expertise Together (SPIRE-SET) led by Professor Denise McDonald has been awarded funding via the recent Irish Research Council’s New Foundations awards.
The award will enable Professor McDonald and her team to host the SPIRE-SET family conference which aims to bring families and professionals together to share experiences which will enrich both perspectives.
There is evidence that providing opportunities for professionals and families to have open conversations about what they are experiencing and the expertise they have developed is helpful on a number of levels. Professionals hear what families have to say differently, and they are reminded of the humanity of the people they work with. Families experience a power shift and validation of their expertise.
The impact that this project will have is the benefit to family caregivers, healthcare professionals, researchers and policymakers, through:
- Improved understanding for families and professionals of the experience of caring for a child with Severe Neurological Impairment (SNI).
- Families feeling more listened to and understood by professionals
- Improved informal networks (for example, informal support groups) of families with SNI.
- Professionals feeling more confident in their work with families where a child has SNI through listening to families and through talking to other professionals.
- A research priority list that can lead directly to research funding applications.
There is evidence that providing opportunities for professionals and families to have open conversations about what they are experiencing and the expertise they have developed is helpful on a number of levels. Professionals hear what families have to say differently, and they are reminded of the humanity of the people they work with. Families experience a power shift and validation of their expertise.
Professor McDonald said:
“We’re very excited to be bringing parents and professionals together to learn from each other with a diversity of voices.”
This project includes the following collaborators/partners and their roles:
Dr Charlotte Wilson, Senior Clinical Psychologist, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and Department of Psychology, Trinity College Dublin
Dr Siobhan McCormack, Clinical Research Fellow, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and University of Galway
Dr Joanne Balfe, Consultant Paediatrician, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and Laura Lynn Children’s Hospice
Dr Aoife Mahony, Consultant Paediatrician, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and Enable Ireland CHO 6
Dr Emma Curtis, Consultant Paediatrician, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght
Dr Aedin Collins, Consultant Paediatrician, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght and Crumlin
Ms Stephanie Kelly, candidate Advanced Nurse Practitioner, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght
Ms Maeve Ledden, Clinical Nurse Manager, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght
Ms Aisling Dunphy, Senior Paediatric Dietitian, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght
Dr Anna Delahunt, Clinical Specialist Dietitian, Department of Child Development and Neurodisability, Children’s Health Ireland at Tallaght
Civic Society Partner: Enable Ireland (CEO John O’ Sullivan)
