Aims The management of continence issues for children with Spina Bifida requires early evaluation of bladder function and lifelong surveillance, ultimately aiming for social continence. The aim of this study was to identify the current bladder and bowel services available from the perspectives of parents and service providers of children with Spina Bifida in an Irish population.
Methods This mixed methods study involved completion of self-developed questionnaires by 155 parents of and 247 service providers. It also included in-depth qualitative interviews (46) to gather further information. Participants were sampled from national databases, paediatricians, voluntary, and professional bodies to obtain a national representation.
Results Parents and service providers both identified the Nurse Specialist as the most involved professional in addressing children’s continence needs (45% parents, 46% service providers). This service was highly valued where available, and the need for additional community continence nursing support to provide local family and staff training was identified.
From a medical perspective 37% of parents noted their child had never seen a urologist with 63% indicating that they had not seen a urologist in the last year. Only 30% of parents and 39% of service providers felt a paediatrician was involved in addressing continence needs.
62% of services providers reported having no involvement in continence management with only 18% seeing this as being part of their role. In relation to interventions, half of the population use catheterisation and just under half are still reliant on nappies/pads. Prophylactic or therapeutic medications are taken by 60% and only 6% have had surgical intervention.
Conclusion This study identified varied national services available to meet the bladder and bowel needs of this population. The community nursing support role was identified as a potential area for development, and additional support and training of existing staff could provide valuable support for bladder and bowel continence needs in the community. Medical support from specialist urology and paediatricians was an area identified as requiring development to manage patients’ medical needs.