Background: The complex healthcare needs of individuals with spina bifida (SB) and/or hydrocephalus continue beyond childhood and adolescence. Internationally, healthcare transition planning and long-term care for adults with SB and/or hydrocephalus are recognised as significant challenges.
Aims: (1) To describe the experiences and perceptions of people with SB and/or hydrocephalus, and their families, during and after transition from Irish paediatric healthcare services; and (2) to identify barriers to, and models of care for, improving health and healthcare for adults with SB and/or hydrocephalus in Ireland.
Methods: The proposed project incorporates two rapid reviews: (1) evidence synthesis of international best practices in supporting transition from paediatric to adult healthcare services for people with SB and/or hydrocephalus; and (2): evidence synthesis of international best practices in the organization and delivery of care for adults with SB and/or hydrocephalus. We will conduct a Photovoice study to explore experiences and perceptions of adolescents with SB and/or hydrocephalus, and their parents, during transition from paediatric healthcare services. We will conduct an online survey and focus groups to explore the health, experiences and perceptions of Irish healthcare services among adults with SB and/or hydrocephalus who have left paediatric care and their families. We will use a Delphi study to develop group consensus about the potential barriers, ideal models of care, and potential initiatives to improve healthcare for people with SB and/or hydrocephalus in Ireland. Potential Impact: The proposed project will address the knowledge gap relating to experiences of care transition and health care use in the Irish system among people with SB and/or hydrocephalus and their families and will generate Delphi-based expert consensus on how to improve healthcare for adults with SB and/or hydrocephalus in Ireland.
