Developing a community based service model for disability: Listening to the needs of all beneficiaries and providers

Issue title: Spina Bifida

Guest editors: Timothy Brei and Amy Houtrow

Article type: Research Article

Authors: Collins, Katrina

Affiliations: Crann Centre, Ballincollig, County Cork, Ireland | Tel.: +447761069270; E-mail: [email protected]

Abstract: PURPOSE: To inform the strategic and operational development of a community based service model at the Crann Centre, Cork, Ireland for SB children, adults, their families and providers. A needs assessment was conducted by gathering the views of multiple stakeholder perspectives within the SB community in the geographical region the Centre will serve. The intention is to create project deliverables that are responsive to the needs highlighted through this research. METHODS: The study used a multi method design with a participatory research approach to explore the needs of SB individuals, families and providers. This involved in depth interviews, focus groups and online surveys. RESULTS: One hundred and fifty-nine respondents contributed to this qualitative needs assessment. The research established a range of psychosocial, clinical, vocational and educational issues causing ongoing difficulties for SB individuals and families. Providers highlighted supports that would benefit the social and clinical wellbeing of persons with SB. Collectively participants in the study reported that there was an absence of coordinated, continuous and comprehensive service delivery for the SB community in the region. This was amplified by geographical location of services and access to relevant supports. CONCLUSION: Consensus across stakeholders in this research pointed to the necessity for an innovative model of community based provision at the Crann Centre. This was described as offering a service with family at the core of an assets based model of practice. A key finding was the lack of importance placed on the social and emotional development of SB individuals. Traditionally participants described a singular focus on physical health through clinically defined treatment models. The desire for a social model of disability that informed health and wellbeing of SB individuals and families emerged as a prominent recommendation from the research.

Keywords: Spina bifida, needs assessment, community provision, family led support

DOI: 10.3233/PRM-170448

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 10, no. 3-4, pp. 227-230, 2017