Understanding Parents’ Perspectives of Support Services for People Living with Spina Bifida and/or Hydrocephalus in Ireland: A Qualitative Exploration

Purpose: In Ireland, the complex needs of people with Spina Bifida and/or Hydrocephalus (SB and/or H) are treated across primary care and tertiary specialist services. Traditionally, there has been much variation in how primary care services are delivered. To increase equity, ‘Progressing Disability Services for Children and Young People’ is a policy which is being implemented to reconfigure children’s services into multidisciplinary teams, for all disabilities. These changes, and an apparent discontinuity of support in the transition to adult services, requires further research exploring service delivery processes. Method: This study explored parents’ perspectives of support services for people with SB and/or H. Eight parents of people with SB and/or H participated in semi-structured interviews which were transcribed and analysed using thematic analysis. Results: Six themes were generated: (1) Difficulty accessing services; (2) Impact of waiting lists; (3) Onus on parents; (4) Importance of communication; (5) Reduced service provision following the implementation of ‘Progressing Disability Services’; and (6) Lack of adult services. Conclusions: While the service redesign for people with SB and/or H and their families is still in the implementation stage, this research contributes to the evolution of these changes by identifying the enhancing aspects such as effective communication and the inhibiting aspects including a parent’s perception of increased responsibility for supporting their family member and barriers in access to services.