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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

1. Introduction

Advances in medicine and surgery have significantly increased survival and improved the quality of life for those affected with spina bifida in the recent decades [1, 2, 3]. Further, improved awareness, integration, and support systems have benefitted those with spina bifida and their families [4, 5]. Programs have been developed and implemented to benefit those affected, based on a better understanding of both physical and social needs [6, 7, 8]. Along with specialized clinical care centers, several private and public organizations (such as the Spina Bifida Association and Centers for Disease Control and Prevention, respectively) are invested in multi-disciplinary care, education, and development in order to enhance the progression to health and independence of individuals with spina bifida [4]. While there has been remarkable advocacy, research, and support for those with spina bifida in the United States, there have also been studies showing unmet needs and barriers to care among those affected [9, 10].

The Spina Bifida Association of Georgia (SBAGA) is a chapter of the national Spina Bifida Association organization (SBA), and serves Georgia residents by providing needed education, information, and support at the community level in a compassionate environment [4]. The mission of the organization is to promote prevention of spina bifida and enhance the lives of all affected. SBAGA ensures that all individuals have opportunities to grow and thrive in an integrated society, offering various programs and services to meet the needs of those living with spina bifida and their families in Georgia.

The objective of our study was to conduct a needs assessment among parents/guardians and young adults served by SBAGA to understand if the organization was adequately meeting their needs, and to identify challenges and opportunities for the improvement of SBAGA services. We conducted the needs assessment survey in April-June 2017, reaching out to all registered members of SBAGA.

Table 1
Demographic characteristics of parents/guardians of children and independent adults with spina bifida who responded to the Spina Bifida association of georgia needs assessment survey

Demographic characteristics	Parents/guardians ( $N=$ 96) ${}^{1}$		Independent adults ( $N=$ 23)
Age (years)
Mean (standard deviation)	12.5 (9.15)		39.0 (14.43)
Median (range)	11 (0.17–39)		36 (14–65)
Gender	Frequency	Percent	Frequency	Percent
Male	49	51	9	39
Female	47	49	14	61
Race and ethnicity
White, non-Hispanic	60	63	16	70
Black, non-Hispanic	16	17	3	13
Hispanic/Latino	10	10	2	9
Asian/Pacific islander	7	7	0	0
Native American/American Indian	0	0	0	0
Other ${}^{2}$	3	3	1	4

Numbers and percents in the table do not reflect total number of respondents due to missing data for some items. ${}^{1}$ Information obtained from parent/guardian responses. ${}^{2}$ Includes biracial (Hispanic/White), mixed (Hispanic/Black/White), and east indian

Table 2

Parents/guardians and independent adult responses regarding degree of importance and limiting factors for utilization of Spina Bifida Association of Georgia (SBAGA) sponsored events and activities

Survey questions	Parents/guardians ( $N=$ 96)		Independent adults ( $n=$ 23)
	$n$ *	%	$n$ *	%
How long have you/your child or dependent been a part of SBAGA?
Less than a year	8	8	0	0
1–2 years	11	11	2	9
2–3 years	9	9	2	9
3–4 years	18	19	2	9
5 $+$ years	49	51	14	61
Where do you get information regarding SBAGA?
SBAG	40	42	13	57
Online	50	52	17	74
SBAG sponsored events	19	20	5	22
Parent/guardian/or others with spina bifida	13	14	4	17
Other ${}^{1}$	11	11	0	0
What SBAGA resources are most important for you/your child or dependent?
Bladder and bowel education	65	55	15	65
Social and communication skills education	45	38	7	30
Medical support	44	37	13	57
Transition and independence training	43	36	11	48
Vocational programs	33	28	7	30
Driving resources	28	24	9	39
Other ${}^{2}$	6	5	1	4
As parents/guardians, what limitations keep you from attending SBAGA sponsored events?
Location	72	75	–	–
Type of event	14	15	–	–
Cost to attend	22	23	–	–
Social/communication skills	2	2	–	–
Day/time of event	47	49	–	–
Transportation	11	11	–	–
Not applicable	8	8	–	–
Other ${}^{3}$	10	10	–	–
What limitations keep you/your child or dependent from attending SBAGA sponsored events?
Location	70	73	14	61
Type of event	24	20	8	35
Cost to attend	25	21	4	17
Social/communication skills	4	3	0	0
Day/time of event	44	37	8	35
Transportation	15	13	9	39
Not applicable	2	2	1	4
Other ${}^{4}$	4	3	2	9
As a parent/guardian, indicate which SBAGA sponsored activity you are most interested in attending?
Medical education or updates	30	31	–	–
Parent/guardian support groups	19	20	–	–
Transition plans and independence training	21	22	–	–
Medical care management	17	18	–	–
Other ${}^{5}$	3	3	–	–
Indicate which SBAGA sponsored activity you/your child or dependent is most interested in attending
Medical education or updates	9	9	7	30
Support groups	9	9	4	17
Transition plans and independence training	12	13	3	13
Medical care management	8	8	4	17
Recreational outings and events	53	55	2	9
Other ${}^{6}$	2	2

Table 2, continued
Survey questions	Parents/guardians ( $N=$ 96)		Independent adults ( $n=$ 23)
	$n$ *	%	$n$ *	%
What medical items or goods do you/your child or dependent need the most help with?
Rehab equipment (wheelchairs, walkers, braces, etc.)	22	23	9	39
Catheter	21	22	5	22
Food	1	1	0	0
Diapers or pullups	20	21	1	4
Clothes	7	7	0	0
Holiday gifts for kids (only if applicable)	6	6	0	0
Other ${}^{7}$	10	10	–	–

Numbers and percents in the table do not reflect total number of respondents due to missing data for some items. ${}^{1}$ Includes email, Facebook, Spina Bifida Clinic. ${}^{2}$ Includes adult specialty medical care, Doctor’s information, opportunity to meet and know how other individuals with spina bifida are coping with their condition. ${}^{3}$ Includes lack of information about events, parent’s age, non-availability or conflict of time, responsibility of other children. ${}^{4}$ Includes age and health issues of parents, lack or conflict of time, responsibility of other children, lack of events of interest “there is nothing for me”. ${}^{5}$ Includes bowel/bladder care, social events, activities for adults with spina bifida. ${}^{6}$ Includes future care and placement, walks and Fundraising. ${}^{7}$ Includes Pediasure, sterile gloves, transportation, resources for accessible vehicle, lift wheelchair cushions.

Table 3

Parent/guardian and independent adults responses regarding degree of importance and likelihood of attending Spina Bifida Association of Georgia (SBAGA) sponsored events

Survey questions	Not connected		Somewhat connected		Connected		Very connected		Not applicable
How connected do you feel to SBAGA?	$n$	%	$n$	%	$n$	%	$n$	%	$n$	%
Parents/guardian	26	27	39	41	18	19	12	13	0	0
Independent adult	6	26	9	39	4	17	3	13	0	0
How connected do you feel your child or dependent is to SBAGA?
Parents/guardian	36	39	27	28	18	19	9	10	0	0
Independent adult	n/a
	Not important		Somewhat important		Important		Very important		Not applicable
How important are management and education on learning disabilities from SBAGA to you OR your child or dependent?	$n$	%	$n$	%	$n$	%	$n$	%	$n$	%
Parents/guardian	3	3	11	11	21	22	36	38	22	23
Independent adult	1	4	4	17	7	30	6	26	4	17
How important are social and communication education from SBAGA to you/your child or dependent?
Parents/guardian	1	1	16	17	23	24	35	36	17	18
Independent adult	1	4	4	17	3	13	10	43	4	17
How important are bladder and bowel management programs from SBAGA to you/your child or dependent?
Parents/guardian	2	2	6	6	17	18	42	44	23	24
Independent adult	1	4	2	9	3	13	14	61	3	13
How important is medical care management (medicine, pain control, etc) from SBAGA to you/your child or dependent?
Parents/guardian	4	4	17	18	17	18	32	33	22	23
Independent adult	1	4	2	9	7	30	8	35	4	17
How important are vocational programs from SBAGA to you/your child or dependent?
Parents/guardian	3	3	7	7	13	14	27	28	44	46
Independent adult	2	9	2	9	2	9	9	39	7	30
How important are/will independence trainings from SBAGA to you/your child or dependent?
Parents/guardian	3	3	6	6	20	21	38	40	25	26
Independent adult	3	13	1	4	4	17	8	35	6	26
How important are/will driving resources from SBAGA to you/your child or dependent?
Parents/guardian	8	8	8	8	19	20	31	32	28	29
Independent adult	3	13	0	0	2	9	9	39	7	30
How important is nurse telephone triage, education or support to you/your child or dependent?
Parents/guardian	8	8	19	20	19	20	20	21	26	27
Independent adult	4	17	5	22	3	13	6	26	4	17
	Not needed		Somewhat needed		Needed		Very needed		Not applicable
How needed was/is a transition plan from childhood to adolescence from SBAGA?	$n$	%	$n$	%	$n$	%	$n$	%	$n$	%
Parents/guardian	10	10	9	9	8	8	24	25	42.71	43
Independent adult	4	17	0	0	3	13	8	35	7	30

Table 3, continued
Survey questions	Not needed		Somewhat needed		Needed		Very needed		Not applicable
How needed was/is a transition plan from adolescence to adulthood from SBAGA?
Parents/guardian	7	7	5	5	6.25	5	29	30	46	48
Independent adult	3	13	1	4	4	17	8	35	5	22
	Not likely		Somewhat likely		Likely		Very likely		Not applicable
How likely are you to attend a SBAGA sponsored medical education or updates workshop?	$n$	%	$n$	%	$n$	%	$n$	%	$n$	%
Parents/guardian	9	9	37	39	29	30	21	22	0	0
Independent adult	1	4	7	30	9	39	4	17	0	0
How likely is your child or dependent to attend SBAGA sponsored recreational outings and events?
Parents/guardian	17	18	27	28	22	23	30	31	0	0
Independent adult	3	13	9	39	4	17	3	13	0	0
How likely are you/your child or dependent to attend the SBAGA holiday party?
Parents/guardian	21	22	25	26	23	24	27	28	0	0
Independent adult	8	35	3	13	6	26	4	17	0	0
How likely are you to attend SBAGA sponsored parent/guardian support groups?
Parents/guardian	16	17	35	36	26	27	16	17	3	3
Independent adult	14	61	1	4	2	9	0	0	4	17
How likely are you/your child or dependent to attend SBAGA sponsored support groups?
Parents/guardian	14	15	41	43	29	30	9	9	0	0
Independent adult	9	39	5	22	5	22	3	13	0	0
How likely are you/your child or dependent to attend other SBAGA sponsored activities?
Parents/guardian	10	10	38	40	29	30	19	20	0	0
Independent adult	3	13	6	26	9	39	3	13	0	0

2. Methods

2.1 Survey participants

The survey was aimed at members of SBAGA who were registered with the organization as of January 1, 2017. The complete list of all registered members was obtained from the SBAGA listserve. All potential participants were contacted by email. For a few without an email address on file, surveys were mailed. Participants were also recruited in person when they attended SBAGA clinic appointments or events. The SBAGA Needs Assessment Survey was conducted during April–June 2017.

2.2 Survey questionnaire

All survey items were developed by the SBAGA, primarily guided by the functional objectives of the organization. The questionnaire was created in English and translated to Spanish by a Spanish language expert. Overall, the survey contained a total of 34 questions with several responses modeled on a Likert-scale. The first five questions assessed demographic and family characteristics (name, age (in years), gender, race and ethnicity, relation to the individual with spina bifida). The survey questions then asked the participants about the length of time they have been with SBAGA (in years) and how connected they feel to SBAGA. A set of questions assessed the ‘degree’ of importance (‘not important, ‘somewhat important’, ‘important’, ‘very important’) of SBAGA to them, in general; and the degree of importance of the specific programs and services; the likelihood of participation (‘not likely’, ‘somewhat likely’, ‘likely’, ‘very likely’) in SBAGA-sponsored events and activities; as well as the reasons that limited the utilization of, or participation in SBAGA-sponsored programs and activities.

The questions were directed separately to the parents/guardians of individuals with spina bifida and independent adults with spina bifida, in order to assess the needs and perceptions of both groups of participants. The questions were formatted with both closed- and open-ended response options to maximize the information responders could provide. At the closing, the survey also provided an opportunity to the participants to express any other concerns or needs related to their experiences with SBAGA.

The survey was pilot-tested within the organization first, administered to nine board members, some of whom utilize SBAGA services themselves. The pilot survey phase helped further clarify some questions.

The pilot-tested survey was administered either as an online version, using Google Forms, or on paper (handed in person at spina bifida clinic at the hospital, sent via post, or at a SBAGA fund-raiser event “2017 Walk and Roll for Spina Bifida”). Survey completion time was about 15 minutes on average. Participation was voluntary. For email and postal surveys, there was one additional follow-up attempt to reach non-responders two weeks after the first attempt to reach participants. Non-responders were given another 2 weeks to participate. During the two rounds of the survey, incentives were given to responders through a raffle drawing ($50 gift certificate). Two participants were randomly drawn from the sample to receive the gift certificate; one during the first round of surveys, and the second during the follow-up phase. All were aware of the raffle when the surveys were emailed or given in person at clinics or the SBAGA event. Additionally, participants were provided with the email address and phone number of the SBAGA-assigned staff member if they had any questions about the survey. Completed surveys were received directly by the study coordinators at SBAGA online, via post in self-addressed envelopes, or in person during clinic visits or SBAGA events. Surveys were completed in either English or Spanish. Descriptive statistics were used to summarize responses as frequencies and percentages, and means and standard deviations (SD). Surveys were analyzed using SAS 9.4 (SAS Institute, Cary, NC). This study was approved by the Emory University Institutional Review Board.

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 $\pm$ SD $=$ 39 years $\pm$ 14.3, median $=$ 36 years).

3.1 SBAGA-sponsored events/resources

Table 2 presents responses regarding the importance and limiting factors for utilization of SBAGA events and activities. The questions also surveyed participants about the length of time they have been a part of SBAGA, where they received information regarding SBAGA, and what resources were most important to them and/or their children, along with limitations to access said resources.

3.2 Findings from parents/guardian responses

About 50% of the parent/guardian respondents were associated with SBAGA for more than 5 years. Most received their information regarding SBAGA from the organization and its website. The most important resource to parents/guardians offered by SBAGA was bladder and bowel education (55%), followed by social and communications skills education (38%), medical support (37%), and transition and independence training (36%). Location of the event and transportation were reported as the most frequent limiting factors to attending SBAGA sponsored events. Recreational outings and events were the most favored SBAGA-sponsored activity type. On responses related to need for type of medical items or goods needed for their child, the highest need was for help with rehabilitation equipment (e.g., wheelchairs, walkers, braces, etc.), catheters, diapers, or pull-ups (Table 2).

On questions related to importance and likelihood of attending SBAGA-sponsored events, a moderate number of respondents (32%) indicated that they felt connected or very connected to SBAGA. Most parents/guardians indicated that SBAGA-offered programs on management and education for learning disabilities, social and communication education, bladder and bowel management programs, medical care management, vocational programs, independence training, driving resources, nurse triage (including education and support) were important to them and their child (Table 3).

On questions related to needs associated with transition plans from childhood to adolescence, and from adolescence to adulthood, a majority of parent/guar- dian responses showed a high need. When asked how likely parents/guardians were to attend SBAGA-sponsored medical education or update workshops, over 50% said that they were ‘likely’ or ‘highly likely’ to attend. Other questions on likelihood of participation revealed that parents/guardians were most likely to attend SBAGA sponsored recreational outcomes and events, holiday parties, support groups, or other events in the future (Table 3).

Open-ended responses at the end of the survey from parents/guardians were summarized. Camp Krazy Legs was noted as one of the most successful offerings of SBAGA for teens with spina bifida. Camp Krazy Legs is a partnership between Children’s Healthcare of Atlanta, Camp Twin Lakes, and the SBAGA which offers a progressive program for children and teens to learn, develop, and practice independent living skills in a fun camp format, using games, group activities, workshops, sports, and community outings to teach and reinforce these life skills (https://www.choa.org/camps/ camp-krazy-legs). Several expressed a need for additional programs and support in other parts of Georgia (outside of Metropolitan Atlanta). There were responses on a need for 24-hour nurse triage from clinic, more information on weight management and exercise/sports with spina bifida, independence training for younger children, a need for a monthly meeting to allow social interactions among children, education on medical insurance and benefits during transition, and better communication about events and trainings.

3.3 Findings from independent adult responses

Of the 23 independent adults, 14 were associated with SBAGA for more than 5 years. Most respondents received their information regarding SBAGA from the organization and from its website. The most important resource to independent adults offered by SBAGA was bladder and bowel education (65%), followed by medical support (57%), and transition and independence training (48%). Location of the event and transportation were reported as the most frequent limiting factors to attend SBAGA-sponsored events. Independent adults were most likely to attend events on medical education followed by support groups and medical care management. Independent adults mostly needed help with rehabilitation equipment and catheters (Table 2).

Overall, 30–60% reported various SBAGA-spon- sored activities, including education on learning disabilities, medical care management, bladder and bowel management, communication, vocational programs, independence training, and driving resources, as ‘important’ or ‘very important’ (Table 3). A high proportion of independent adults reported a transition plan from childhood to adolescence and from adolescence to adulthood as ‘very needed’, and reported attending SBAGA-sponsored medical education or recreational activities as ‘likely’ or ‘somewhat likely’, while attending support groups or holiday parties as ‘not likely’ (Table 3).

Open-ended responses from independent adults mainly revealed a need for better support for older adults with spina bifida, improved education and medical services, improved reach outside of metropolitan Atlanta, and a database of doctors and medical suppliers who accept Medicaid and are knowledgeable about spina bifida in adult populations. One respondent expressed a need for meetings focused on adults with spina bifida to discuss issues relevant to ages 30 and above.

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.

Footnotes

Acknowledgments

We thank all the families and adult members of SBAGA, and those that participated in the needs assessment survey and provided valuable reflections and experiences of their association with the organization. We also thank the SBAGA President and Board Members for the feedback they provided during the pilot survey, and for their support during the administration and analysis of the survey. No funding was received for this study.

Conflict of interest

The authors have no conflict of interest to report.

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

Abstract

PURPOSE:

METHODS:

RESULTS:

CONCLUSIONS:

Keywords

1. Introduction

Table 1 Demographic characteristics of parents/guardians of children and independent adults with spina bifida who responded to the Spina Bifida association of georgia needs assessment survey

2.1 Survey participants

2.2 Survey questionnaire

3. Results

3.1 SBAGA-sponsored events/resources

3.2 Findings from parents/guardian responses

3.3 Findings from independent adult responses

4. Discussion

Footnotes

Acknowledgments

Conflict of interest

References

Table 1
Demographic characteristics of parents/guardians of children and independent adults with spina bifida who responded to the Spina Bifida association of georgia needs assessment survey