Needs assessment survey for children and adults with spina bifida in Georgia
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.
Medienart: |
E-Artikel |
---|
Erscheinungsjahr: |
2019 |
---|---|
Erschienen: |
2019 |
Enthalten in: |
Zur Gesamtaufnahme - volume:12 |
---|---|
Enthalten in: |
Journal of pediatric rehabilitation medicine - 12(2019), 4 vom: 30., Seite 383-392 |
Sprache: |
Englisch |
---|
Beteiligte Personen: |
Kapoor, Renuka [VerfasserIn] |
---|
Links: |
---|
Themen: |
Access to health care |
---|
Anmerkungen: |
Date Completed 24.09.2020 Date Revised 24.09.2020 published: Print Citation Status MEDLINE |
---|
doi: |
10.3233/PRM-190567 |
---|
funding: |
|
---|---|
Förderinstitution / Projekttitel: |
|
PPN (Katalog-ID): |
NLM303470313 |
---|
LEADER | 01000naa a22002652 4500 | ||
---|---|---|---|
001 | NLM303470313 | ||
003 | DE-627 | ||
005 | 20231225112907.0 | ||
007 | cr uuu---uuuuu | ||
008 | 231225s2019 xx |||||o 00| ||eng c | ||
024 | 7 | |a 10.3233/PRM-190567 |2 doi | |
028 | 5 | 2 | |a pubmed24n1011.xml |
035 | |a (DE-627)NLM303470313 | ||
035 | |a (NLM)31744034 | ||
040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
041 | |a eng | ||
100 | 1 | |a Kapoor, Renuka |e verfasserin |4 aut | |
245 | 1 | 0 | |a Needs assessment survey for children and adults with spina bifida in Georgia |
264 | 1 | |c 2019 | |
336 | |a Text |b txt |2 rdacontent | ||
337 | |a ƒaComputermedien |b c |2 rdamedia | ||
338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
500 | |a Date Completed 24.09.2020 | ||
500 | |a Date Revised 24.09.2020 | ||
500 | |a published: Print | ||
500 | |a Citation Status MEDLINE | ||
520 | |a 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 | ||
520 | |a 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 | ||
520 | |a 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 | ||
520 | |a 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 | ||
650 | 4 | |a Journal Article | |
650 | 4 | |a Access to health care | |
650 | 4 | |a children | |
650 | 4 | |a needs assessment | |
650 | 4 | |a neural tube defects | |
650 | 4 | |a spina bifida | |
650 | 4 | |a young adults | |
700 | 1 | |a De Carlo, Kristen |e verfasserin |4 aut | |
700 | 1 | |a Raman, Lisa |e verfasserin |4 aut | |
700 | 1 | |a Thibadeau, Judy |e verfasserin |4 aut | |
700 | 1 | |a Kancherla, Vijaya |e verfasserin |4 aut | |
773 | 0 | 8 | |i Enthalten in |t Journal of pediatric rehabilitation medicine |d 2008 |g 12(2019), 4 vom: 30., Seite 383-392 |w (DE-627)NLM191595438 |x 1875-8894 |7 nnns |
773 | 1 | 8 | |g volume:12 |g year:2019 |g number:4 |g day:30 |g pages:383-392 |
856 | 4 | 0 | |u http://dx.doi.org/10.3233/PRM-190567 |3 Volltext |
912 | |a GBV_USEFLAG_A | ||
912 | |a GBV_NLM | ||
951 | |a AR | ||
952 | |d 12 |j 2019 |e 4 |b 30 |h 383-392 |