Title: Exploring the value of the ‘F-Words for Child Development’
Lead Researcher and Affiliation: Dr Hazel Killeen University of Galway -
The 'F-words' approach encourages clinicians and families to focus on activities that are important to the child and family and frame therapy goals around these on six key areas of child development, function, family, fun, friends, fitness and future. Recognising that no one factor is more important than another, the project hopes to encourage people in the childhood disability field to adopt this way of thinking and apply these concepts in their work with children with disabilities and their families
Title: An exploration of the perspectives of paediatric physiotherapists and occupational therapists who refer to specialised seating services, on the use of and provision of custom contoured seating systems for children with complex needs.
Lead Researcher and Affiliation: Mary McDonagh, Ulster University, For further information please contact mmcdonagh@crc.ie
Title Unmet Health Needs among Young Adults with Cerebral Palsy in Ireland: A Cross-Sectional Study.
Lead Researcher and Affiliation: Jennifer Ryan, Royal College of Surgeons
This study investigated the unmet health needs of young adults with cerebral palsy (CP) to understand how best to develop appropriate health services. This study aimed to describe unmet health needs among young adults with CP in Ireland and examine if these differed between young adults who were and were not yet discharged from children's services. In this cross-sectional study, young adults with CP aged 16-22 years completed a questionnaire assessing unmet health needs. Published research at https://pubmed.ncbi.nlm.nih.gov/36013083/
Title: HSE Personalised Budgets Demonstration Evaluation,
Lead Researcher and Affiliation: Dharragh Hunt National Disability Authority
Personalised Budgets are one way in which disabled people who use social care service can have a say in how their support is organised. Progress in the area of Personalised Budgets would contribute to Ireland’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), in particular, Article 19 the right to live independently and be included in the community. The service users of the CRC engaged in this research with the National Disability Authority (NDA) in the evaluation of the personalised budgets demonstration project in Ireland. For more information on this project visit https://nda.ie/transforming-disability-services/personalised-budgets
Title: My Voice: Engaging Young People with Intellectual Disabilities in Research
Lead Researcher and Affiliation: Dr Emma Nicholson, Dublin City University
Email: emma.nicholson@dcu.ie
It is very important that all members of society can take part in research activities so that researchers can develop projects that will provide meaningful outcomes. This study supported a group of young people to develop research skills by acting as co-researchers in a research project. The development of these skills can help young people to participate in future research projects, while also providing researchers with a better understanding of how to ensure the voices of this population are heard in future research.
The Ignition Study: Improving the experience of transition from child to adult health services for young people with cerebral palsy
Lead Researcher: Dr Jennifer Fortune and Dr Jennifer Ryan, RCSI
Email: jenniferfortune@rcsi.ie
The Ignition study wanted to find out about the experience of moving from child to adult health services for young people with cerebral palsy in Ireland. Young people, parents and health professionals completed two surveys to understand how transition was managed for young people with cerebral palsy. Young people, parents and health professionals took part in an interview with a researcher to share their views about transition and how it could be improved. A group of young adults with cerebral palsy and parents used to findings to identify and develop resources to support people with cerebral palsy to move to adult health services.
Findings can be found on RCSI website
Investigating associations between physical activity and cardiovascular risk among children and adults with cerebral palsy.
Lead Researcher: Dr Jennifer Ryan, RCSI
Email: jenniferryan@rcsi.ie
When this research was conducted, little was known about how much physical activity people with cerebral palsy participated in and if this affected their risk of developing cardiovascular disease. This study explored how to accurately measure physical activity among people with cerebral palsy, how much physical activity people with cerebral palsy participated in, and how this was associated with risk factors for cardiovascular disease such as waist circumference and blood pressure. The findings were included in a review that informed the UK physical activity guidelines for disabled adults (2019).
Findings are published here:
Reduced Moderate-to-Vigorous Physical Activity and Increased Sedentary Behavior Are Associated With Elevated Blood Pressure Values in Children With Cerebral Palsy https://academic.oup.com/ptj/article/94/8/1144/2735645
Waist Circumference Provides an Indication of Numerous Cardiometabolic Risk Factors in Adults With Cerebral Palsy https://www.archives-pmr.org/article/S0003-9993(14)00280-9/fulltext
Habitual physical activity and cardiometabolic risk factors in adults with cerebral palsy https://www.sciencedirect.com/science/article/pii/S0891422214001851?via%3Dihub
Comparison of Patterns of Physical Activity and Sedentary Behavior Between Children With Cerebral Palsy and Children With Typical Development
https://academic.oup.com/ptj/article/95/12/1609/2888266?login=false
A comparison of three accelerometry-based devices for estimating energy expenditure in adults and children with cerebral palsy https://jneuroengrehab.biomedcentral.com/articles/10.1186/1743-0003-11-116
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