A descriptive study of the factors that impact upon occupational performance and engagement for people living with spina bifida and/or hydrocephalus in the Mid-West of Ireland

Background: Ireland has one of the highest prevalence of spina bifida (SB) worldwide. Between 2000 and 2012 there were 664 documented cases of SB, or a form of neural tube defect, per 10,000 live births, in the registries of Cork and Kerry, Dublin, Galway and the South East of Ireland. Furthermore, in the same time frame, and within the same registries, 113 cases of hydrocephalus were reported per 10,000 live births (EUROCAT, 2012). Objectives: This study investigated the factors that impact occupational performance and engagement among people with SB and/or hydrocephalus, living in the Mid-West of Ireland. Methods: Quantitative research was used. Data collected by the Health Research Board, by means of questionnaires with 77 people with SB and/or hydrocephalus living in the Mid-West of Ireland, informed this research project. Results: The main factors that impacted upon occupational performance and engagement among participants in the Mid-West of Ireland were: 1) restrictions in body functions and structures, and limitations in performance skills, 2) external factors such as the physical environment, 3) limited access to health/therapeutic and support services. Conclusion: There are many complex features associated with SB and/or hydrocephalus that can impact upon occupational performance and engagement. Despite these complexities it is vital for people with these conditions to engage in their chosen and meaningful occupations in order to promote their over health and wellbeing.