Spina Bifida (SB) and hydrocephalus are lifelong conditions. Many people who have SB will also have hydrocephalus. While there are a number of supports and care plans for children with SB and/or hydrocephalus in Ireland, transitioning into adult care may pose problems. This project will investigate the experiences of those affected by SB and/or hydrocephalus as they move from child to adult healthcare settings. We will also explore the health care experiences and needs of adults with SB and/or hydrocephalus.
The project will involve different steps. We will explore how adolescents with SB and/or hydrocephalus and their families feel about leaving children’s healthcare services using a “Photovoice” study. Here, participants will help design a study that combines taking photographs about their experiences, with discussions about the content of the images. We will separately survey adults with SB and/or hydrocephalus on their own health and healthcare needs, as well having small group discussions on adults’ healthcare experiences. In what is known as a Delphi study, we will ask experts in the area to help agree on (1) why transitioning to adult care is difficult, and (2) what potential initiatives may help this process. These findings will be examined alongside two literature reviews on the same themes
This project is important for those affected by SB and/or hydrocephalus in Ireland. The priorities are driven by patients, family members, carers and healthcare professionals, all of whom will have an active and ongoing role in shaping the projects design. It is clear that there is an urgent need to understand what can help meet the needs of people living with SB and/or hydrocephalus and their families. The findings of this work should help advocate for those with the condition and point to ways in which their healthcare may be improved.
