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

3. Results

We received completed survey responses from 119 individuals (115 in English and 4 in Spanish) through multiple sources (i.e., email, mail, clinic, and Spina Bifida Walk n Roll event). The majority of the survey responses were received online in response to our email communication (i.e., 510 email requests, 10 postal mail requests (for those in our member registry without an email address)), 10 on-site solicitations during clinic visits, and reaching over 100 families through in-person solicitation during the 2017 Spina Bifida Walk n Roll event. The response rate during each of these attempts varied, and we had unclear denominators. The participation rate among email responders, who were the majority of responders, was about 30% (estimate based on a caveat that we are not completely aware of the number of actively used email addresses in our membership database). Of the 119 completed surveys, 96 were responses from parents/guardians of individuals with spina bifida and 23 were responses from independent adults with spina bifida. The majority of the participants completed the survey online.

Table 1 shows the general demographics of the study participants. A majority ( n = 84 [88%]) of parent respondents were mothers of the individuals with spina bifida. Fifty-one percent ( n = 49) of the children were male, and 62% ( n = 60) were non-Hispanic White. The median age of the children was 11 years. Sixty-one percent ( n = 14) of the respondents who self-identified as “independent adults” were female, with a majority ( n = 16 [70%]) being non-Hispanic White, and aged between 14 and 65 years (mean ± SD = 39 years ± 14.3, median = 36 years).

4. Discussion

Overall, our survey findings confirmed that SBAGA played an important role in addressing the needs of those affected with spina bifida in Georgia. Parents, guardians and independent adults responded reported that various SBAGA-sponsored activities and resources were important to them. The bladder and bowel education program was noted as the most important program for both groups, along with a high favorability of transition and independence training for adults. Location and transportation were noted as major limitations for constituents to attend SBAGA-sponsored events. Medical education programs were highly sought-after by both groups. Overall, our needs assessment survey responses revealed participant perceptions on SBAGA-sponsored events and activities; this information will help improve and tailor the activities as noted in the survey responses. A major finding in the survey was that in spite of the long association with SBAGA, several respondents did not feel connected or felt only ‘somewhat connected’ to the organization. Therefore, the reach of SBAGA needs to be further improved to make its constituents feel not only more connected to the organization, but to participate and make use of the resources the organization offers.

Our needs assessment survey indicated bladder and bowel education as one of the most important resources offered by SBAGA. Young adults with spina bifida frequently face struggles with bladder and bowel management [11] which impacts their ability to participate in everyday activities [12]. There are known challenges in managing incontinence, catheterization, and bowel management [12]. The impact of parental roles in incontinence management can lead to stress in families [13]. Further, neurogenic bladder in spina bifida increases the risk of urinary tract infections, renal calculi, and sometimes renal failure and bladder cancer, all preventable, and requiring care, education, and adequate management [14, 15, 16, 17]. Thus, it should be one of the primary objectives of spina bifida organizations to direct their education and services to prevent bladder and bowel issues in a timely manner with education and the establishment of connection to appropriate medical care services.

The second main finding of our survey was a need for transition care and education in both groups. With advances in medical and surgical care, the survival of those with spina bifida has not only improved, but has posed a need for extended age-specific care into adulthood. Facilitating both social and medical care transitions from childhood to adolescence, and adolescence to adulthood for persons with spina bifida is now an important consideration [18]. Transition care has been identified as a high priority for action [19, 20]. Results from previous studies support the development of transition plans that include both parents and adolescents along with healthcare providers [21, 22]. Hence, knowledge about what caregivers and independent adults experience and need is crucial in developing programs and strategies on transition care within SBAGA and similar organizations.

Independence training and resources are critical issues for those living with spina bifida. While we celebrate improved survival among those with spina bifida, facilitating independence should become a related priority. Challenges in achieving independence among those with spina bifida, potentially due to lack of motivation, planning, and preparedness for becoming independent, need to be addressed [23, 24]. Transition to independence should begin at an early age and programs should be available throughout the transition process [24]. Care and support for adults with spina bifida should be available at various points as they age, providing training in life skills, self-management, housing, and employment opportunities. Although the Department of Vocational Rehabilitation is available at the county or state level, the local chapter of the Spina Bifida Association can serve as a resource to achieve independence training [25].

Parents of young adults with physical disabilities like spina bifida greatly contribute to the child’s participation at school, at home, and in the community. Parents experience many challenges in doing so, including choosing the appropriate and meaningful leisure activities for their children that support their participation outside of the home [26]. In our study, a majority (55%) of parents responded that their children are most interested and likely to attend the recreational and social events, like the holiday party.

There is little information available about parents’ needs in supporting participation of their children with a physical disability. A small number of studies have reported “social and system support” needs, followed by the needs for “services and information” [26]. However, our study showed that a majority of parents were less likely to attend the parent/guardian support groups, with location and day or time of the event reported as limiting factors. Caring for a child with spina bifida impacts various aspects of the caregivers’ lives including activities of daily living; time consumption; parental responsibilities; caring for other children; social support; and cost burden [27]. Programs to better support and assist parents, offered in different cities of Georgia, might improve connectedness to SBAGA.

A couple of quotes from parents on the final open-ended question in the survey provided a summary of experiences and needs faced by the community. One parent stated, “As a young family, we attended almost all SBAGA events (social and educational) for many years. This organization is needed to keep the families connected – we learn best from each other. I think this has been the most valuable thing that we gained from SBAGA – the network of family and friend support.” The above statement highlighted the role SBAGA played in supporting families with its events and education programs and providing a supportive platform for families to connect and interact. While another parent provided an experience highlighting an unmet need outside of Atlanta, saying “Localities outside of the Atlanta area are underserved. Unemployable adults, with greatly diminished function, are lonely, isolated, withdrawn, and fearful for their future. Many live in inaccessible homes without private transportation. I’ve often thought that the one most important and beneficial service that could be provided to this population and their families would be the services of medical advocates to assist with navigation of the mazes of medical care, insurance, Medicaid, Medicare, school systems, medical specialists, etc.” These types of feedback are going to guide SBAGA to improve its support network, provide optimal programming, and prevent desperation among children, young adults, adults, and their families affected by spina bifida.

SBAGA meets at least annually with the staff at the Spina Bifida clinic in Atlanta. These meetings offer opportunities for both the chapter and the clinic staffs to find collaborative ways to support the patients and families who attend the clinic so that the needs identified can be addressed effectively. Topics that have been discussed with the providers include continence management, transition, and the importance of keeping appointments. The findings from the survey will be utilized in SBAGA’s future conversations with health care providers.

There were strengths and limitations to our needs assessment. We were unable to reach all members of the SBAGA. The survey was disseminated using multiple methods (e.g., email, mail, and in-person during clinic visits and at an annual Walk-n-Roll event). It is difficult to provide an accurate response rate for the survey as we are unaware of how many of the email addresses were active. In addition, we were limited by an unclear denominator of how many constituents the survey actually reached. We expect the responses represent about 30–40% of the families and young adults served by the SBAGA. With about 120 responses to our survey including those from parents/guardians and adults, we believe we had a representative sample of those served by the organization. One limitation, however, is that the majority of the responders were from the metropolitan Atlanta area, and we may not have a good representation of those in other areas of the state. We made an earnest effort to reach all SBAGA members in the state through online announcements and mailed surveys. This aspect of the survey reach has to be improved in the future. Since the survey was delivered using multiple methods (i.e., email, postal mail, in person), we are unable to provide the specific number of people the survey reached, and the accurate response rate. Based on our understanding of active SBAGA users, we assume the response rate to be approximately 30%-40%. The information provided in open-ended questions at the end of the survey qualitatively added value of responses provided in the closed-ended survey questions. The survey was pilot-tested which helped improve the content prior to administering it to the parents/guardians and independent adults. The incentives provided may have helped increase survey participation. The diversity of demographic characteristics of responders suggests representation from most with spina bifida within the SBAGA catchment population. Responses were very constructive and will inform future direction for SBAGA.

In conclusion, our survey findings highlight that SBAGA is valued by those with spina bifida and their families in Georgia. There are some vital needs that the organization can aim to provide its constituents, and these needs are in accordance with what is expected. SBAGA will emphasize the need for connectivity, medical education, bladder and bowel management services and training, and transition and independence issues. The needs assessment survey has served as a way to show that SBAGA is continually striving to meet the demands of the spina bifida community in Georgia and deliver what the community needs. The survey findings will be considered for quality improvement of current programs and development of new programs with emerging needs and challenges among members served by the organization. The chapter will aim to address the prioritized needs such as engaging more closely with the community (through our education road shows). We will hold educational symposia to provide information and support for issues across the lifespan. Other chapters of SBA can utilize and tailor our survey to similarly study needs within their communities.