Needs assessment survey for children and adults with spina bifida in Georgia

Issue title: Immigration and Transition: Emerging Trends in Spina Bifida Care

Guest editors: Timothy Brei and Jonathan Porter Castillo

Article type: Research Article

Authors: Kapoor, Renuka^a | De Carlo, Kristen^b | Raman, Lisa^b | Thibadeau, Judy^b | Kancherla, Vijaya^{b; c; *}

Affiliations: [a] Hubert Department of Global Health, Rollins School of Public Health, Emory University, Atlanta, GA, USA | [b] Spina Bifida Association of Georgia, Atlanta, GA, USA | [c] Center for Spina Bifida Prevention, Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA

Correspondence: [*] Corresponding author: Vijaya Kancherla, Research Assistant Professor, Department of Epidemiology, Emory University Rollins School of Public Health, 1518 Clifton Rd NE, Atlanta, GA 30322, USA. Tel.: +1 404 727 8884; Fax: +1 404 727 8737; E-mail: [email protected].

Abstract: PURPOSE: We conducted a needs assessment among parents/guardians of children and independent adults with spina bifida, served by the Spina Bifida Association of Georgia (SBAGA). The objective was to assess if SBAGA is adequately meeting the needs of its constituents and to identify challenges and opportunities to improve services. METHODS: The survey targeted all members of SBAGA in 2017. Survey questions were drafted separately for parents/guardians of children, and independent adults with spina bifida. Both closed- and open-ended response options were provided. The survey was pilot-tested, and administered in English and Spanish, using email, post, or in person. RESULTS: A total of 119 individuals completed the survey. For parents/guardians (n= 96), the most important needs were bladder and bowel education, social and communication skills education, medical support, and transition and independence training. Independent adults (n= 23) responded that they mostly needed bladder and bowel education, medical support, and transition and independence training. Location of the SBAGA events and transportation to the events were the most frequent limiting factors for both groups. CONCLUSIONS: Our survey findings highlighted that SBAGA services are valued overall. The survey findings will be used to guide quality improvement of current programs, and develop programs addressing emerging needs and challenges.

Keywords: Access to health care, children, needs assessment, neural tube defects, spina bifida, young adults

DOI: 10.3233/PRM-190567

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 12, no. 4, pp. 383-392, 2019