National Spina Bifida Research completed by Temple Street Children’s University Hospital NOW available for download
This innovative research project aimed to investigate the health and therapy needs of children aged 0-18years with Spina Bifida in Ireland and was kindly funded by the Children’s Fund for Health (CFFH), Temple Street.
This national study was conducted by Senior Occupational Therapist (Sarah Governey) Senior Physiotherapist (Eimear Culligan) and Consultant Paediatrician (Dr. Jane Leonard) and involved questionnaires completed with 155 parents/guardians and 247 service providers, interviews with 51 participants from both groups and a focus group with children aged 8-18 years with Spina Bifida.
The research aimed to:
- Identify the current services for children with Spina Bifida
- Gather perspectives of families (expectations) and service providers (recommendations)
- Highlight the impact of Spina Bifida on the quality of life of children from their perspective
- Review international best practice in Spina Bifida
- Develop guidelines and recommendations to help improve services
This interactive PDF (7.5 MB PDF) includes and interactive table of contents which helps you navigate the document and also the reference list also includes direct links to the referenced articles abstracts or full articles if available for your convenience.
The research was launched to the public and media in the Mansion House, Dublin in September 2014. The research team subsequently met with the Minister for State in Primary Care, Social Care (disability/older people) and Mental Health (Minister Kathleen Lynch) and officials from the Department of Health and the Health Service Executive. In 2015, the HSE Service Plan was published with new funding allocated for Spina Bifida to help improve services in Temple Street Children’s University Hospital and new staff are being recruited to improve services for children accessing the national multidisciplinary spina bifida clinic here in Temple Street.
The research team would like to thank everyone involved in supporting the research project including the CFFH, the Occupational Therapy, Physiotherapy and Neurosurgery Departments, the Child Health Information Centre and Communications Departments in Temple Street and all contributing authors, contributors and participants.