{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T16:51:46Z","timestamp":1775148706662,"version":"3.50.1"},"reference-count":190,"publisher":"American Spinal Injury Association","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>To examine intervention studies focused on developing independence readiness skills in individuals with spina bifida.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>The scoping review used Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines to identify intervention studies published from 2000 to 2024. Articles were included if they were an intervention study focused on preidentified domains of independence based on the Guidelines for the Care of People with Spina Bifida by the Spina Bifida Association. Title and abstract screening and full-text articles were completed by author dyads. Data extraction was completed in duplicate to ensure accuracy by separate raters. Inconsistencies were resolved through group consensus and item review.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>From 2542 unique references, 2028 were removed for not meeting inclusion criteria. Following full-text review, 38 studies were included in the final analysis. Only 5 studies utilized a rigorous randomized control trial study design. Intervention gaps targeting supported decision-making models and sexual health were noted. Interventions generally targeted school-age youth to older adults, with no studies focused on interventions for early childhood populations. Outcomes measurement varied widely across studies; future research will benefit from standardization of tools used to measure outcomes of interest.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Intervention studies focused on increasing independence skills for individuals with spina bifida are limited. For this growing area of research, comprehensive representation of understudied and underrepresented individuals within the spina bifida community, consideration of shared data elements across studies, and alignment of targeted domains of independence with stakeholder input must be central to future research efforts.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.46292\/sci25-00046","type":"journal-article","created":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T17:28:33Z","timestamp":1771608513000},"page":"110-135","source":"Crossref","is-referenced-by-count":0,"title":["Empowering Independence in Spina Bifida: A Scoping Review of Interventions"],"prefix":"10.46292","volume":"32","author":[{"given":"Camille S.","family":"Wilson","sequence":"first","affiliation":[{"name":"Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lauren E.","family":"Bradstreet","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Natasha N.","family":"Ludwig","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alison","family":"Gehred","sequence":"additional","affiliation":[{"name":"Medical Library, Nationwide Children's Hospital, Columbus, Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Stephan","sequence":"additional","affiliation":[{"name":"Medical Library, Nationwide Children's Hospital, Columbus, Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"T. Andrew","family":"Zabel","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Koterba","sequence":"additional","affiliation":[{"name":"Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"25425","reference":[{"issue":"18","key":"b1","series-title":"Birth Defects Res","first-page":"1420","article-title":"National population-based estimates for major birth defects, 2010-2014","volume":"111","author":"Mai CT","year":"2019","unstructured":"Mai CT, Isenburg JL, Canfield MA et al. National population-based estimates for major birth defects, 2010-2014. Birth Defects Res. 2019;111 (18): 1420-1435. doi:10.1002\/bdr2.1589."},{"issue":"2","key":"b2","series-title":"Rehabil Psychol","first-page":"196","article-title":"Self-care independence in children with neurological disorders: An interactional model of adaptive demands and executive dysfunction","volume":"52","author":"Tarazi RA","year":"2007","unstructured":"Tarazi RA, Mahone EM, Zabel TA. Self-care independence in children with neurological disorders: An interactional model of adaptive demands and executive dysfunction. Rehabil Psychol. 2007;52 (2): 196-205. doi:10.1037\/0090-5550.52.2.196."},{"issue":"1","key":"b3","series-title":"Dev Disabil Res Rev","first-page":"31","article-title":"The cognitive phenotype of spina bifida meningomyelocele","volume":"16","author":"Dennis M","year":"2010","unstructured":"Dennis M, Barnes MA. The cognitive phenotype of spina bifida meningomyelocele. Dev Disabil Res Rev. 2010;16 (1): 31-39. doi:10.1002\/ddrr.89."},{"issue":"9","key":"b4","series-title":"Acta Paediatr Oslo Nor 1992","first-page":"1682","article-title":"A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life","volume":"111","author":"Lindquist B","year":"2022","unstructured":"Lindquist B, Jacobsson H, Strinnholm M, Peny Dahlstrand M. A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life. Acta Paediatr Oslo Nor 1992. 2022;111 (9): 1682-1694. doi:10.1111\/apa.16420."},{"issue":"3","key":"b5","series-title":"Pediatr Neurosurg","first-page":"114","article-title":"Spina bifida outcome: A 25-year prospective","volume":"34","author":"Bowman RM","year":"2001","unstructured":"Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg. 2001;34 (3): 114-120. doi:10.1159\/000056005."},{"issue":"9","key":"b6","series-title":"PLoS Med","article-title":"Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies","volume":"17","author":"Glinianaia SV","year":"2020","unstructured":"Glinianaia SV, Morris JK, Best KE et al. Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies. PLoS Med. 2020;17 (9):e1003356. doi:10.1371\/journal.pmed.1003356."},{"issue":"9715","key":"b7","series-title":"Lancet Lond Engl","first-page":"649","article-title":"20-year survival of children born with congenital anomalies: A population-based study","volume":"375","author":"Tennant PWG","year":"2010","unstructured":"Tennant PWG, Pearce MS, Bythell M, Rankin J. 20-year survival of children born with congenital anomalies: A population-based study. Lancet Lond Engl. 2010;375 (9715): 649-656. doi:10.1016\/S0140-6736(09)61922-X."},{"issue":"1","key":"b8","series-title":"J Dev Behav Pediatr","first-page":"e20","article-title":"Psychosocial adjustment in emerging adults with and without spina bifida: A 14-year follow-up study","volume":"43","author":"Holmbeck GN","year":"2022","unstructured":"Holmbeck GN, Kritikos TK. Psychosocial adjustment in emerging adults with and without spina bifida: A 14-year follow-up study. J Dev Behav Pediatr. 2022;43 (1):e20-e28. doi:10.1097\/DBP.0000000000000956."},{"issue":"4","key":"b9","series-title":"J Pediatr Rehabil Med","first-page":"457","article-title":"Preface to the special issue for the guidelines for the care of people with spina bifida","volume":"13","author":"Dicianno BE","year":"2020","unstructured":"Dicianno BE, Dosa N, Beierwaltes P. Preface to the special issue for the guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 457-459. doi:10.3233\/PRM-200691."},{"issue":"2","key":"b10","series-title":"Disabil Health J","first-page":"100816","article-title":"Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association","volume":"13","author":"Dicianno BE","year":"2020","unstructured":"Dicianno BE, Beierwaltes P, Dosa N et al. Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association. Disabil Health J. 2020;13 (2):100816. doi:10.1016\/j.dhjo.2019.06.005."},{"issue":"4","key":"b11","series-title":"J Pediatr Rehabil Med","first-page":"423","article-title":"Spina bifida transition to adult healthcare guidelines","volume":"12","author":"Fremion EJ","year":"2019","unstructured":"Fremion EJ, Dosa NP. Spina bifida transition to adult healthcare guidelines. J Pediatr Rehabil Med. 2019;12 (4): 423-429. doi:10.3233\/PRM-190633."},{"key":"b12","article-title":"Guidelines for the Care of People with Spina Bifida","author":"Spina Bifida Association","year":"2018","unstructured":"Spina Bifida Association. Guidelines for the Care of People with Spina Bifida. 2018. http:\/\/www.spinabifidaassociation.org\/guidelines\/."},{"issue":"4","key":"b13","series-title":"Int J Child Adolesc Health","first-page":"595","article-title":"Testing the transition preparation training program: A randomized controlled trial","volume":"3","author":"Betz CL","year":"2010","unstructured":"Betz CL, Smith K, Macias K. Testing the transition preparation training program: A randomized controlled trial. Int J Child Adolesc Health. 2010;3(4):595-607."},{"issue":"3","key":"b14","series-title":"J Pediatr Rehabil Med","first-page":"235","article-title":"Testing the Transition Preparation Training Program: Well-being of relationships outcomes","volume":"8","author":"Betz CL","year":"2015","unstructured":"Betz CL, Smith KA, Macias K, Deavenport-Saman A. Testing the Transition Preparation Training Program: Well-being of relationships outcomes. J Pediatr Rehabil Med. 2015;8 (3): 235-246. doi:10.3233\/PRM-150340."},{"issue":"6","key":"b15","series-title":"Am J Phys Med Rehabil","first-page":"425","article-title":"Feasibility of using mobile health to promote self-management in spina bifida","volume":"95","author":"Dicianno BE","year":"2016","unstructured":"Dicianno BE, Fairman AD, McCue M et al. Feasibility of using mobile health to promote self-management in spina bifida. Am J Phys Med Rehabil. 2016;95 (6): 425-437. doi:10.1097\/PHM.0000000000000400."},{"issue":"12","key":"b16","series-title":"Dev Med Child Neurol","first-page":"1392","article-title":"Camp\u2010based psychosocial intervention dosage and changes in independence in young people with spina bifida","volume":"61","author":"Driscoll CFB","year":"2019","unstructured":"Driscoll CFB, Murray CB, Holbein CE, Stiles\u2010Shields C, Cuevas G, Holmbeck GN. Camp\u2010based psychosocial intervention dosage and changes in independence in young people with spina bifida. Dev Med Child Neurol. 2019;61 (12): 1392-1399. doi:10.1111\/dmcn.14250."},{"issue":"4","key":"b17","series-title":"J Pediatr Psychol","first-page":"412","article-title":"A camp-based psychosocial intervention to promote independence and social function in individuals with spina bifida: moderators of treatment effectiveness","volume":"38","author":"Holbein CE","year":"2013","unstructured":"Holbein CE, Murray CB, Psihogios AM et al. A camp-based psychosocial intervention to promote independence and social function in individuals with spina bifida: moderators of treatment effectiveness. J Pediatr Psychol. 2013;38 (4): 412-424. doi:10.1093\/jpepsy\/jst003."},{"issue":"7","key":"b18","series-title":"Ann Intern Med","first-page":"467","article-title":"PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation","volume":"169","author":"Tricco AC","year":"2018","unstructured":"Tricco AC, Lillie E, Zarin W et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169 (7): 467-473. doi:10.7326\/M18-0850."},{"issue":"1","key":"b19","series-title":"Int J Soc Res Methodol","first-page":"19","article-title":"Scoping studies: towards a methodological framework","volume":"8","author":"Arksey H","year":"2005","unstructured":"Arksey H, O\u2019Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8 (1): 19-32. doi:10.1080\/1364557032000119616."},{"key":"b20","series-title":"Implement Sci","first-page":"69","article-title":"Scoping studies: Advancing the methodology","volume":"5","author":"Levac D","year":"2010","unstructured":"Levac D, Colquhoun H, O\u2019Brien KK. Scoping studies: Advancing the methodology. Implement Sci. 2010, 5:69. doi:10.1186\/1748-5908-5-69."},{"issue":"6","key":"b21","series-title":"J Pediatr Urol","first-page":"800.e1","article-title":"Establishing the first community-centered spina bifida research agenda","volume":"18","author":"Struwe S","year":"2022","unstructured":"Struwe S, Thibadeau J, Kelly MS, Widener-Burrows D. Establishing the first community-centered spina bifida research agenda. J Pediatr Urol. 2022;18 (6):800.e1-800.e7. doi:10.1016\/j.jpurol.2022.06.014."},{"key":"b22","author":"Covidence","unstructured":"Covidence. Accessed March 13, 2024. https:\/\/app.covidence.org\/sign_in."},{"key":"b23","series-title":"J Pediatr Nurs","first-page":"44","article-title":"Nurse-led eHealth transition care program for adolescents with spina bifida: A feasibility and acceptability study","volume":"67","author":"Choi EK","year":"2022","unstructured":"Choi EK, Bae E, Yun H. Nurse-led eHealth transition care program for adolescents with spina bifida: A feasibility and acceptability study. J Pediatr Nurs. 2022, 67: 44-51. doi:10.1016\/j.pedn.2022.07.004."},{"key":"b24","series-title":"World Neurosurg","first-page":"e1455","article-title":"Telemedicine and spina bifida transition: A pilot randomized trial","volume":"167","author":"Kuhn EN","year":"2022","unstructured":"Kuhn EN, Hopson B, Shamblin I, Maleknia PD, Rocque BG. Telemedicine and spina bifida transition: A pilot randomized trial. World Neurosurg. 2022, 167:e1455-e1460. doi:10.1016\/j.wneu.2022.09.076."},{"issue":"4","key":"b25","series-title":"Disabil Health J","first-page":"101508","article-title":"The impact of a health care transition clinic on spina bifida condition management and transition planning","volume":"16","author":"Manohar S","year":"2023","unstructured":"Manohar S, Staggers KA, Huang X, Castillo J, Castillo H, Fremion E. The impact of a health care transition clinic on spina bifida condition management and transition planning. Disabil Health J. 2023;16 (4):101508. doi:10.1016\/j.dhjo.2023.101508."},{"issue":"5","key":"b26","series-title":"J Pediatr Nurs","first-page":"395","article-title":"Use of the anal plug in the treatment of fecal incontinence in patients with meningomyelocele","volume":"23","author":"Shoshan L","year":"2008","unstructured":"Shoshan L, Ben-Zvi D, Katz-Leurer M. Use of the anal plug in the treatment of fecal incontinence in patients with meningomyelocele. J Pediatr Nurs. 2008;23 (5): 395-399. doi:10.1016\/j.pedn.2006.09.006."},{"issue":"2","key":"b27","series-title":"Phys Occup Ther Pediatr","first-page":"176","article-title":"Occupation based telerehabilitation intervention for adolescents with myelomeningocele: A pilot study","volume":"41","author":"Steinhart S","year":"2021","unstructured":"Steinhart S, Raz-Silbiger S, Beeri M, Gilboa Y. Occupation based telerehabilitation intervention for adolescents with myelomeningocele: A pilot study. Phys Occup Ther Pediatr. 2021;41(2):176-191. doi:10.1080\/01942638.2020.1807448."},{"issue":"6","key":"b28","series-title":"J Int Neuropsychol Soc","first-page":"672","article-title":"Goal management training of executive functions in patients with spina bifida: A randomized controlled trial","volume":"19","author":"Stubberud J","year":"2013","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Goal management training of executive functions in patients with spina bifida: A randomized controlled trial. J Int Neuropsychol Soc. 2013;19 (6): 672-685. doi:10.1017\/S1355617713000209."},{"issue":"1","key":"b29","series-title":"Neuropsychol Rehabil","first-page":"26","article-title":"Goal Management Training improves everyday executive functioning for persons with spina bifida: Self and informant reports six months post-training","volume":"24","author":"Stubberud J","year":"2014","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Goal Management Training improves everyday executive functioning for persons with spina bifida: Self and informant reports six months post-training. Neuropsychol Rehabil. 2014;24 (1): 26-60. doi:10.1080\/09602011.2013.847847."},{"issue":"1","key":"b30","series-title":"Rehabil Psychol","first-page":"1","article-title":"Emotional health and coping in spina bifida after goal management training: A randomized controlled trial","volume":"60","author":"Stubberud J","year":"2015","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Emotional health and coping in spina bifida after goal management training: A randomized controlled trial. Rehabil Psychol. 2015;60 (1): 1-16. doi:10.1037\/rep0000018."},{"issue":"1","key":"b31","series-title":"Comput Inform Nurs","first-page":"24","article-title":"Computer-mediated support for adolescents with cerebral palsy or spina bifida","volume":"29","author":"Barnfather A","year":"2011","unstructured":"Barnfather A, Stewart M, Magill-Evans J, Ray L, Letourneau N. Computer-mediated support for adolescents with cerebral palsy or spina bifida. Comput Inform Nurs. 2011;29 (1): 24-33. doi:10.1097\/NCN.0b013e3181f9db63."},{"issue":"3","key":"b32","series-title":"Inform Prim Care","first-page":"113","article-title":"Growing up with confidence: Using telehealth to support continence self-care deficits amongst young people with complex needs","volume":"21","author":"Levy S","year":"2014","unstructured":"Levy S, Henderson L, McAlpine C. Growing up with confidence: Using telehealth to support continence self-care deficits amongst young people with complex needs. Inform Prim Care. 2014;21 (3): 113-117. doi:10.14236\/jhi.v21i3.58."},{"issue":"6","key":"b33","series-title":"J Pediatr Health Care","first-page":"627","article-title":"Developing a transition care coordination program for youth with spina bifida","volume":"31","author":"Seeley A","year":"2017","unstructured":"Seeley A, Lindeke L. Developing a transition care coordination program for youth with spina bifida. J Pediatr Health Care. 2017;31 (6): 627-633. doi:10.1016\/j.pedhc.2017.04.015."},{"issue":"4","key":"b34","series-title":"J Adolesc","first-page":"795","article-title":"Brief report: An online support intervention: Perceptions of adolescents with physical disabilities","volume":"34","author":"Stewart M","year":"2011","unstructured":"Stewart M, Barnfather A, Magill-Evans J, Ray L, Letourneau N. Brief report: An online support intervention: Perceptions of adolescents with physical disabilities. J Adolesc. 2011;34 (4): 795-800. doi:10.1016\/j.adolescence.2010.04.007."},{"issue":"6","key":"b35","series-title":"J Spinal Cord Med","first-page":"977","article-title":"Using a mobile health app in a weight management program for overweight and obese adolescents and young adults with spina bifida","volume":"47","author":"Bent MA","year":"2024","unstructured":"Bent MA, Valenzuela-Moss JN, Smith KA et al. Using a mobile health app in a weight management program for overweight and obese adolescents and young adults with spina bifida. J Spinal Cord Med. 2024;47 (6): 977-986. doi:10.1080\/10790268.2023.2231675."},{"key":"b36","series-title":"mHealth","first-page":"15","article-title":"Retrospective evaluation of a pilot eHealth\/mHealth telewellness program for people with disabilities: Mindfulness, Exercise, and Nutrition To Optimize Resilience (MENTOR)","volume":"8","author":"Rimmer JH","year":"2022","unstructured":"Rimmer JH, Wilroy J, Galea P, Jeter A, Lai BW. Retrospective evaluation of a pilot eHealth\/mHealth telewellness program for people with disabilities: Mindfulness, Exercise, and Nutrition To Optimize Resilience (MENTOR). mHealth. 2022, 8: 15-15. doi:10.21037\/mhealth-21-34."},{"key":"b37","series-title":"Int J Telerehabilitation","article-title":"Outcomes of clinicians, caregivers, family members and adults with spina bifida regarding receptivity to use of the iMHere mHealth solution to promote wellness","author":"Fairman AD","year":"2013","unstructured":"Fairman AD, Dicianno BE, Datt N, Garver A, Parmanto B, McCue M. Outcomes of clinicians, caregivers, family members and adults with spina bifida regarding receptivity to use of the iMHere mHealth solution to promote wellness. Int J Telerehabilitation. Published online June 11, 2013. doi:10.5195\/ijt.2013.6116."},{"issue":"22","key":"b38","series-title":"Int J Environ Res Public Health","first-page":"8316","article-title":"Octopus watch fosters family resilience by enhancing occupational engagement for children with spina bifida and\/or hydrocephalus: Pilot study","volume":"17","author":"Jennings M","year":"2020","unstructured":"Jennings M, Guilfoyle A, Green J, Cleary Y, Gowran RJ. Octopus watch fosters family resilience by enhancing occupational engagement for children with spina bifida and\/or hydrocephalus: Pilot study. Int J Environ Res Public Health. 2020;17 (22):8316. doi:10.3390\/ijerph17228316."},{"issue":"11","key":"b39","series-title":"Disabil Rehabil","first-page":"1136","article-title":"Impact of a person-centred community rehabilitation service on outcomes for individuals with a neurological condition","volume":"39","author":"Barker RN","year":"2017","unstructured":"Barker RN, Sealey CJ, Polley ML, Mervin MC, Comans T. Impact of a person-centred community rehabilitation service on outcomes for individuals with a neurological condition. Disabil Rehabil. 2017;39 (11): 1136-1142. doi:10.1080\/09638288.2016.1185803."},{"key":"b40","series-title":"J Pediatr Nurs","first-page":"e54","article-title":"A 2-step integrative education program and mhealth for self-management in Korean children with spina bifida: Feasibility study","volume":"49","author":"Choi EK","year":"2019","unstructured":"Choi EK, Jung E, Ji Y, Bae E. A 2-step integrative education program and mhealth for self-management in Korean children with spina bifida: Feasibility study. J Pediatr Nurs. 2019, 49:e54-e62. doi:10.1016\/j.pedn.2019.09.002."},{"issue":"1","key":"b41","series-title":"Scand J Occup Ther","first-page":"64","article-title":"Children with myelomeningocele and independence in the toilet activity: A pilot study","volume":"20","author":"Donlau M","year":"2013","unstructured":"Donlau M, Mattsson S, Glad-Mattsson G. Children with myelomeningocele and independence in the toilet activity: A pilot study. Scand J Occup Ther. 2013;20 (1): 64-70. doi:10.3109\/11038128.2012.700729."},{"issue":"8","key":"b42","series-title":"J Pediatr Psychol","first-page":"848","article-title":"A camp-based intervention targeting independence among individuals with spina bifida","volume":"35","author":"O\u2019Mahar K","year":"2010","unstructured":"O\u2019Mahar K, Holmbeck GN, Jandasek B, Zukerman J. A camp-based intervention targeting independence among individuals with spina bifida. J Pediatr Psychol. 2010;35 (8): 848-856. doi:10.1093\/jpepsy\/jsp125."},{"issue":"10","key":"b43","series-title":"Disabil Rehabil","first-page":"1152","article-title":"A community-based exercise program to increase participation in physical activities among youth with disability: A feasibility study","volume":"41","author":"Shields N","year":"2019","unstructured":"Shields N, van den Bos R, Buhlert-Smith K, Prendergast L, Taylor N. A community-based exercise program to increase participation in physical activities among youth with disability: A feasibility study. Disabil Rehabil. 2019;41 (10): 1152-1159. doi:10.1080\/09638288.2017.1422034."},{"issue":"4","key":"b44","series-title":"Neuropsychol Rehabil","first-page":"601","article-title":"The feasibility and acceptability of goal management training of executive functions in children with spina bifida and acquired brain injury","volume":"31","author":"Stubberud J","year":"2021","unstructured":"Stubberud J, Holthe IL, L\u00f8vstad M, Schanke AK, Brandt A, Finnanger T. The feasibility and acceptability of goal management training of executive functions in children with spina bifida and acquired brain injury. Neuropsychol Rehabil. 2021;31 (4): 601-620. doi:10.1080\/09602011.2020.1723649."},{"issue":"1","key":"b45","series-title":"J Occup Rehabil","first-page":"42","article-title":"Improved occupational performance of young adults with a physical disability after a vocational rehabilitation intervention","volume":"24","author":"Verhoef JAC","year":"2014","unstructured":"Verhoef JAC, Roebroeck ME, Van Schaardenburgh N, Floothuis MCSG, Miedema HS. Improved occupational performance of young adults with a physical disability after a vocational rehabilitation intervention. J Occup Rehabil. 2014;24 (1): 42-51. doi:10.1007\/s10926-013-9446-9."},{"issue":"11","key":"b46","series-title":"Arch Phys Med Rehabil","first-page":"1969","article-title":"Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system","volume":"97","author":"Dicianno BE","year":"2016","unstructured":"Dicianno BE, Lovelace J, Peele P et al. Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system. Arch Phys Med Rehabil. 2016;97 (11):1969-1978. doi:10.1016\/j.apmr.2016.05.014."},{"issue":"5","key":"b47","series-title":"Disabil Rehabil","first-page":"822","article-title":"The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida \u2013 a randomized controlled trial","volume":"45","author":"Peny-Dahlstrand M","year":"2023","unstructured":"Peny-Dahlstrand M, Hofgren C, Lindquist B et al. The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida \u2013 a randomized controlled trial. Disabil Rehabil. 2023;45(5):822-831. doi:10.1080\/09638288.2022.2043459."},{"issue":"19","key":"b48","series-title":"Disabil Rehabil","first-page":"2758","article-title":"Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities","volume":"43","author":"King G","year":"2021","unstructured":"King G, McPherson AC, Kingsnorth S et al. Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities. Disabil Rehabil. 2021;43 (19): 2758-2768. doi:10.1080\/09638288.2020.1716864."},{"issue":"14","key":"b49","series-title":"Disabil Rehabil","first-page":"3097","article-title":"Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities","volume":"46","author":"King G","year":"2024","unstructured":"King G, Kingsnorth S, McPherson AC, Tajik-Parvinchi D. Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities. Disabil Rehabil. 2024;46 (14): 3097-3107. doi:10.1080\/09638288.2023.2243222."},{"issue":"10","key":"b50","series-title":"Disabil Rehabil","first-page":"2079","article-title":"Benefits of residential immersive life skills programs: A prospective study of autonomy and self-efficacy gains and sex differences in youth with disability","volume":"46","author":"Tajik-Parvinchi D","year":"2024","unstructured":"Tajik-Parvinchi D, Kingsnorth S, King G. Benefits of residential immersive life skills programs: A prospective study of autonomy and self-efficacy gains and sex differences in youth with disability. Disabil Rehabil. 2024;46 (10): 2079-2088. doi:10.1080\/09638288.2023.2216474."},{"issue":"3","key":"b51","series-title":"PALAESTRA","article-title":"Psychosocial development of participants with disabilities throughout a reverse-integrated wheelchair basketball program","volume":"27","author":"Hutzler Y","year":"2013","unstructured":"Hutzler Y, Chacham-Guber A, Reiter S. Psychosocial development of participants with disabilities throughout a reverse-integrated wheelchair basketball program. PALAESTRA. 2013;27 (3). Accessed March 9, 2024. https:\/\/js.sagamorepub.com\/index.php\/palaestra\/article\/view\/5062."},{"issue":"1","key":"b52","series-title":"Aust Occup Ther J","first-page":"2","article-title":"Wheelchair skills training programme for children: A pilot study","volume":"59","author":"Sawatzky B","year":"2012","unstructured":"Sawatzky B, Rushton PW, Denison I, McDonald R. Wheelchair skills training programme for children: A pilot study. Aust Occup Ther J. 2012;59 (1): 2-9. doi:10.1111\/j.1440-1630.2011.00964.x."},{"key":"b53","series-title":"J Pediatr Nurs","first-page":"30","article-title":"Program evaluation of Camp V.I.P: Promoting self-confidence and independence for patients with spina bifida","volume":"47","author":"Zimmerman K","year":"2019","unstructured":"Zimmerman K, Williams M, Arynchyna A et al. Program evaluation of Camp V.I.P: Promoting self-confidence and independence for patients with spina bifida. J Pediatr Nurs. 2019, 47: 30-35. doi:10.1016\/j.pedn.2019.04.014."},{"issue":"2","key":"b54","series-title":"Disabil Rehabil","first-page":"228","article-title":"Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: A feasibility study","volume":"42","author":"Peny-Dahlstrand M","year":"2020","unstructured":"Peny-Dahlstrand M, Bergqvist L, Hofgren C, Himmelmann K, \u00d6hrvall AM. Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: A feasibility study. Disabil Rehabil. 2020;42 (2): 228-239. doi:10.1080\/09638288.2018.1496152."},{"issue":"25","key":"b55","series-title":"Disabil Rehabil","first-page":"3645","article-title":"\u201cWith CO-OP I'm the boss\u201d - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida","volume":"42","author":"\u00d6hrvall AM","year":"2020","unstructured":"\u00d6hrvall AM, Bergqvist L, Hofgren C, Peny-Dahlstrand M. \u201cWith CO-OP I'm the boss\u201d - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida. Disabil Rehabil. 2020;42 (25): 3645-3652. doi:10.1080\/09638288.2019.1607911."},{"key":"b56","series-title":"J Pediatr Nurs","first-page":"e92","article-title":"Two-step integrative education program and mHealth for Korean children with spina bifida: A quasi-experimental pre-post study","volume":"51","author":"Choi EK","year":"2020","unstructured":"Choi EK, Jung E, Bae E, Ji Y, Lee A. Two-step integrative education program and mHealth for Korean children with spina bifida: A quasi-experimental pre-post study. J Pediatr Nurs. 2020, 51:e92-e99. doi:10.1016\/j.pedn.2019.12.006."},{"issue":"2","key":"b57","series-title":"Can J Occup Ther","first-page":"82","article-title":"The Canadian Occupational Performance Measure: An outcome measure for occupational therapy","volume":"57","author":"Law M","year":"1990","unstructured":"Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. The Canadian Occupational Performance Measure: An outcome measure for occupational therapy. Can J Occup Ther. 1990;57 (2): 82-87. doi:10.1177\/000841749005700207."},{"key":"b58","article-title":"Delis-Kaplan Executive Function System","author":"Delis DC","year":"2012","unstructured":"Delis DC, Kaplan E, Kramer JH. Delis-Kaplan Executive Function System. Published online October 8, 2012. doi:10.1037\/t15082-000."},{"key":"b59","series-title":"Psychological Assessment Resources","article-title":"Behaviour Rating Inventory of Executive Function: Professional Manual","author":"Gioia GA","year":"2000","unstructured":"Gioia GA, Isquith PK, Guy SC, Kenworthy L. Behaviour Rating Inventory of Executive Function: Professional Manual. Psychological Assessment Resources; 2000."},{"key":"b60","series-title":"Methodology of Frontal and Executive Function","article-title":"Behavioural assessment of the dysexecutive syndrome","author":"Wilson BA","year":"1997","unstructured":"Wilson BA, Evans JJ, Alderman N, Burgess PW, Emslie H. Behavioural assessment of the dysexecutive syndrome. In: Methodology of Frontal and Executive Function. Routledge; 1997."},{"key":"b61","series-title":"Goal Attainment Scaling: Applications, Theory, and Measurement","first-page":"308","volume":"xviii","year":"1994","unstructured":"Goal Attainment Scaling: Applications, Theory, and Measurement. Lawrence Erlbaum Associates, Inc; 1994: xviii, 308."},{"issue":"10","key":"b62","series-title":"Qual Life Res","first-page":"1727","article-title":"Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)","volume":"20","author":"Herdman M","year":"2011","unstructured":"Herdman M, Gudex C, Lloyd A et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20 (10): 1727-1736. doi:10.1007\/s11136-011-9903-x."},{"issue":"2","key":"b63","series-title":"Qual Life Res","first-page":"123","article-title":"Development of a health-related quality of life instrument for use in children with spina bifida","volume":"6","author":"Parkin PC","year":"1997","unstructured":"Parkin PC, Kirpalani HM, Rosenbaum PL et al. Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res. 1997;6 (2): 123-132. doi:10.1023\/A:1026486016212."},{"issue":"3","key":"b64","series-title":"Expert Rev Pharmacoecon Outcomes Res","first-page":"353","article-title":"KIDSCREEN-52 quality-of-life measure for children and adolescents","volume":"5","author":"Ravens-Sieberer U","year":"2005","unstructured":"Ravens-Sieberer U, Gosch A, Rajmil L et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5 (3): 353-364. doi:10.1586\/14737167.5.3.353."},{"issue":"2","key":"b65","series-title":"Med Care","first-page":"126","article-title":"The PedsQL: Measurement model for the pediatric quality of life inventory","volume":"37","author":"Varni JW","year":"1999","unstructured":"Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care. 1999;37 (2): 126-139. doi:10.1097\/00005650-199902000-00003,"},{"key":"b66","author":"PROMIS","unstructured":"PROMIS. Accessed March 18, 2025. https:\/\/www.healthmeasures.net\/explore-measurement-systems\/promis,"},{"issue":"3","key":"b67","series-title":"Cent Eur J Urol","first-page":"306","article-title":"Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida","volume":"70","author":"Szyma\u2010ski KM","year":"2017","unstructured":"Szyma\u2010ski KM, Misseri R, Whittam Bet al., Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida. Cent Eur J Urol. 2017;70 (3): 306-313. doi:10.5173\/ceju.2017.1195,"},{"key":"b68","series-title":"Quality of Life Questionnaire Standardization Manual","author":"Schalock RL","year":"1990","unstructured":"Schalock RL, Keith KD, Hoffman K. Quality of Life Questionnaire Standardization Manual. Mid-Nebraska Mental Retardation Services; 1990."},{"issue":"4","key":"b69","series-title":"J Pediatr Gastroenterol Nutr","first-page":"557","article-title":"The IMPACT Questionnaire: A valid measure of health-related quality of life in pediatric inflammatory bowel disease","volume":"35","author":"Otley A","year":"2002","unstructured":"Otley A, Smith C, Nicholas D et al. The IMPACT Questionnaire: A valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2002;35 (4): 557."},{"issue":"1","key":"b70","series-title":"Rehabil Psychol","first-page":"98","article-title":"The Kennedy Krieger Independence Scales\u2013Spina Bifida Version: A measure of executive components of self-management","volume":"58","author":"Jacobson LA","year":"2013","unstructured":"Jacobson LA, Tarazi RA, McCurdy MD et al. The Kennedy Krieger Independence Scales\u2013Spina Bifida Version: A measure of executive components of self-management. Rehabil Psychol. 2013;58 (1): 98-105. doi:10.1037\/a0031555."},{"issue":"6","key":"b71","series-title":"J Pediatr Psychol","first-page":"698","article-title":"Factor structure of medical autonomy scales in young people with spina bifida","volume":"46","author":"Smith ZR","year":"2021","unstructured":"Smith ZR, Holmbeck GN. Factor structure of medical autonomy scales in young people with spina bifida. J Pediatr Psychol. 2021;46 (6): 698-709. doi:10.1093\/jpepsy\/jsab013."},{"issue":"4","key":"b72","series-title":"J Pediatr Rehabil Med","first-page":"405","article-title":"Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida","volume":"12","author":"Wood D","year":"2019","unstructured":"Wood D, Rocque B, Hopson B, Barnes K, Johnson KR. Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. J Pediatr Rehabil Med. 2019;12 (4): 405-413. doi:10.3233\/PRM-180595."},{"issue":"1","key":"b73","series-title":"J Perinat Educ","first-page":"22","article-title":"Sexuality issues in adolescents with a chronic neurological condition","volume":"11","author":"Sawin KJ","year":"2002","unstructured":"Sawin KJ, Buran CF, Brei TJ, Fastenau PS. Sexuality issues in adolescents with a chronic neurological condition. J Perinat Educ. 2002;11 (1): 22-34. doi:10.1624\/105812402X88579."},{"issue":"1","key":"b74","series-title":"Disabil Health J","first-page":"100940","article-title":"Self-management and spina bifida: A systematic review of the literature","volume":"14","author":"Sawin KJ","year":"2021","unstructured":"Sawin KJ, Margolis RHF, Ridosh MM et al. Self-management and spina bifida: A systematic review of the literature. Disabil Health J. 2021;14 (1):100940. doi:10.1016\/j.dhjo.2020.100940."},{"issue":"1","key":"b75","series-title":"J Particip Med","article-title":"Decision-making for parents of children with medical complexities: Activity theory analysis","volume":"14","author":"Buchanan F","year":"2022","unstructured":"Buchanan F, Lai C, Cohen E, Milo-Manson G, Shachak A. Decision-making for parents of children with medical complexities: Activity theory analysis. J Particip Med. 2022;14 (1):e31699. doi:10.2196\/31699."},{"issue":"4","key":"b76","series-title":"J Pediatr Rehabil Med","first-page":"525","article-title":"Mental health guidelines for the care of people with spina bifida","volume":"13","author":"Kritikos TK","year":"2020","unstructured":"Kritikos TK, Smith K, Holmbeck GN. Mental health guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 525-534. doi:10.3233\/PRM-200719."},{"issue":"2","key":"b77","series-title":"Sex Med Rev","first-page":"244","article-title":"Sexual function of men and women with spina bifida: A scoping literature review","volume":"9","author":"Streur CS","year":"2021","unstructured":"Streur CS, Corona L, Smith JE, Lin M, Wiener JS, Wittmann DA. Sexual function of men and women with spina bifida: A scoping literature review. Sex Med Rev. 2021;9(2):244-266. doi:10.1016\/j.sxmr.2020.09.001."},{"issue":"2","key":"b78","series-title":"Eur J Gen Pract","first-page":"138","article-title":"Setting goals in chronic care: Shared decision making as self-management support by the family physician","volume":"21","author":"Lenzen SA","year":"2015","unstructured":"Lenzen SA, Dani\u00ebls R, van Bokhoven MA, van der Weijden T, Beurskens A. Setting goals in chronic care: Shared decision making as self-management support by the family physician. Eur J Gen Pract. 2015;21 (2): 138-144. doi:10.3109\/13814788.2014.973844."},{"issue":"1","key":"b79","series-title":"Syst Rev","first-page":"155","article-title":"A systematic review of decision aids that facilitate elements of shared decision-making in chronic illnesses: A review protocol","volume":"6","author":"Wieringa TH","year":"2017","unstructured":"Wieringa TH, Kunneman M, Rodriguez-Gutierrez R et al. A systematic review of decision aids that facilitate elements of shared decision-making in chronic illnesses: A review protocol. Syst Rev. 2017;6 (1):155. doi:10.1186\/s13643-017-0557-9."},{"key":"b80","series-title":"Front Pediatr","first-page":"782104","article-title":"Psychological interventions for individuals with acquired brain injury, cerebral palsy, and spina bifida: A scoping review","volume":"10","author":"Jefferies M","year":"2022","unstructured":"Jefferies M, Peart T, Perrier L, Lauzon A, Munce S. Psychological interventions for individuals with acquired brain injury, cerebral palsy, and spina bifida: A scoping review. Front Pediatr. 2022, 10:782104. doi:10.3389\/fped.2022.782104."},{"key":"b81","series-title":"Disabil Rehabil","first-page":"1","article-title":"Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida","author":"\u00d6hrvall AM","year":"2023","unstructured":"\u00d6hrvall AM, Hofgren C, Lindquist B, et al. Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida. Disabil Rehabil. Published online June 23, 2023: 1-10. doi:10.1080\/09638288.2023.2225875."},{"key":"b82","series-title":"Transl Issues Psychol Sci.","first-page":"11","article-title":"Culturally responsive scalable mental health interventions: A call to action","volume":"2022","author":"Alvarez JC","unstructured":"Alvarez JC, Waitz-Kudla S, Brydon C, Crosby E, Witte TK. Culturally responsive scalable mental health interventions: A call to action. Transl Issues Psychol Sci. Published online 2022:11-11."},{"issue":"11","key":"b83","series-title":"Ann Behav Med","first-page":"805","article-title":"Precision health: The role of the social and behavioral sciences in advancing the vision","volume":"54","author":"Hekler E","year":"2020","unstructured":"Hekler E, Tiro JA, Hunter CM, Nebeker C. Precision health: The role of the social and behavioral sciences in advancing the vision. Ann Behav Med. 2020;54 (11): 805-826. doi:10.1093\/abm\/kaaa018."},{"issue":"3","key":"b84","series-title":"Top Spinal Cord Inj Rehabil","first-page":"59","article-title":"Supporting the transition to adulthood for youth with spina bifida: A call for neuropsychology-informed interventions","volume":"28","author":"Bradstreet LE","year":"2022","unstructured":"Bradstreet LE, Ludwig N, Koterba C, Zabel TA, Wilson CS. Supporting the transition to adulthood for youth with spina bifida: A call for neuropsychology-informed interventions. Top Spinal Cord Inj Rehabil. 2022;28 (3): 59-62. doi:10.46292\/sci21-00096."},{"issue":"2","key":"b85","series-title":"Child Neuropsychol J Norm Abnorm Dev Child Adolesc","first-page":"299","article-title":"The role of the neuropsychologist across the stages of recovery from acquired brain injury: A summary from the pediatric rehabilitation neuropsychology collaborative","volume":"29","author":"Watson WD","year":"2023","unstructured":"Watson WD, Lahey S, Baum KT et al. The role of the neuropsychologist across the stages of recovery from acquired brain injury: A summary from the pediatric rehabilitation neuropsychology collaborative. Child Neuropsychol J Norm Abnorm Dev Child Adolesc. 2023;29 (2): 299-320. doi:10.1 080\/09297049.2022.2086691."},{"issue":"6","key":"b86","series-title":"Health Psychol","first-page":"767","article-title":"A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury","volume":"31","author":"Wade SL","year":"2012","unstructured":"Wade SL, Walz NC, Carey J et al. A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury. Health Psychol. 2012;31 (6): 767-776. doi:10.1037\/a0028440."},{"issue":"9","key":"b87","series-title":"Am J Public Health","first-page":"e14","article-title":"The association between race\/ethnicity and major birth defects in the United States, 1999\u20132007","volume":"104","author":"Canfield MA","year":"2014","unstructured":"Canfield MA, Mai CT, Wang Y et al. The association between race\/ethnicity and major birth defects in the United States, 1999\u20132007. Am J Public Health. 2014;104 (9):e14-e23. doi:10.2105\/AJPH.2014.302098."},{"issue":"2","key":"b88","series-title":"Pediatr Nurs","first-page":"98","article-title":"Health professional expectations for self-care skill development in youth with spina bifida","volume":"36","author":"Greenley RN","year":"2010","unstructured":"Greenley RN. Health professional expectations for self-care skill development in youth with spina bifida. Pediatr Nurs. 2010;36(2):98-102."},{"issue":"4","key":"b89","series-title":"J Pediatr Rehabil Med","first-page":"583","article-title":"Self-management and independence guidelines for the care of people with spina bifida","volume":"13","author":"Logan LR","year":"2020","unstructured":"Logan LR, Sawin KJ, Bellin MH, Brei T, Woodward J. Self-management and independence guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 583-600. doi:10.3233\/PRM-200734."},{"issue":"4","key":"b90","series-title":"Clin Neuropsychol","first-page":"585","article-title":"Age-related differences in executive function among children with spina bifida\/hydrocephalus based on parent behavior ratings","volume":"22","author":"Tarazi RA","year":"2008","unstructured":"Tarazi RA, Zabel TA, Mahone EM. Age-related differences in executive function among children with spina bifida\/hydrocephalus based on parent behavior ratings. Clin Neuropsychol. 2008;22 (4): 585-602. doi:10.1080\/13854040701425940."},{"issue":"5","key":"b91","series-title":"West J Nurs Res","first-page":"478","article-title":"A center experience with common data elements in chronic illness self-management research","volume":"45","author":"Bauer WS","year":"2023","unstructured":"Bauer WS, Schiffman RF. A center experience with common data elements in chronic illness self-management research. West J Nurs Res. 2023;45 (5): 478-485. doi:10.1177\/01939459221144851."},{"issue":"3","key":"b92","series-title":"J Nurs Scholarsh","first-page":"249","article-title":"feasibility of combining common data elements across studies to test a hypothesis","volume":"49","author":"Corwin EJ","year":"2017","unstructured":"Corwin EJ, Moore SM, Plotsky A et al. feasibility of combining common data elements across studies to test a hypothesis. J Nurs Scholarsh. 2017;49 (3): 249-258. doi:10.1111\/jnu.12287."},{"key":"b93","article-title":"National Institutes of Health (NIH)","author":"INCLUDE Project","unstructured":"INCLUDE Project. National Institutes of Health (NIH). Accessed March 10, 2024. https:\/\/www.nih.gov\/include-project."},{"issue":"4","key":"b94","series-title":"J Pediatr Rehabil Med","first-page":"323","article-title":"The development of a lifetime care model in comprehensive spina bifida care","volume":"11","author":"Hopson B","year":"2018","unstructured":"Hopson B, Rocque BG, Joseph DB et al. The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323-334. doi:10.3233\/PRM-180548."},{"issue":"2","key":"b95","series-title":"Disabil Health J","first-page":"100833","article-title":"Survey of U.S. adults with spina bifida","volume":"13","author":"Morley CP","year":"2020","unstructured":"Morley CP, Struwe S, Pratte MA et al. Survey of U.S. adults with spina bifida. Disabil Health J. 2020;13 (2):100833. doi:10.1016\/j.dhjo.2019.100833."},{"issue":"18","key":"b1","series-title":"Birth Defects Res","first-page":"1420","article-title":"National population-based estimates for major birth defects, 2010-2014","volume":"111","author":"Mai CT","year":"2019","unstructured":"Mai CT, Isenburg JL, Canfield MA et al. National population-based estimates for major birth defects, 2010-2014. Birth Defects Res. 2019;111 (18): 1420-1435. doi:10.1002\/bdr2.1589."},{"issue":"2","key":"b2","series-title":"Rehabil Psychol","first-page":"196","article-title":"Self-care independence in children with neurological disorders: An interactional model of adaptive demands and executive dysfunction","volume":"52","author":"Tarazi RA","year":"2007","unstructured":"Tarazi RA, Mahone EM, Zabel TA. Self-care independence in children with neurological disorders: An interactional model of adaptive demands and executive dysfunction. Rehabil Psychol. 2007;52 (2): 196-205. doi:10.1037\/0090-5550.52.2.196."},{"issue":"1","key":"b3","series-title":"Dev Disabil Res Rev","first-page":"31","article-title":"The cognitive phenotype of spina bifida meningomyelocele","volume":"16","author":"Dennis M","year":"2010","unstructured":"Dennis M, Barnes MA. The cognitive phenotype of spina bifida meningomyelocele. Dev Disabil Res Rev. 2010;16 (1): 31-39. doi:10.1002\/ddrr.89."},{"issue":"9","key":"b4","series-title":"Acta Paediatr Oslo Nor 1992","first-page":"1682","article-title":"A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life","volume":"111","author":"Lindquist B","year":"2022","unstructured":"Lindquist B, Jacobsson H, Strinnholm M, Peny Dahlstrand M. A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life. Acta Paediatr Oslo Nor 1992. 2022;111 (9): 1682-1694. doi:10.1111\/apa.16420."},{"issue":"3","key":"b5","series-title":"Pediatr Neurosurg","first-page":"114","article-title":"Spina bifida outcome: A 25-year prospective","volume":"34","author":"Bowman RM","year":"2001","unstructured":"Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg. 2001;34 (3): 114-120. doi:10.1159\/000056005."},{"issue":"9","key":"b6","series-title":"PLoS Med","article-title":"Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies","volume":"17","author":"Glinianaia SV","year":"2020","unstructured":"Glinianaia SV, Morris JK, Best KE et al. Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies. PLoS Med. 2020;17 (9):e1003356. doi:10.1371\/journal.pmed.1003356."},{"issue":"9715","key":"b7","series-title":"Lancet Lond Engl","first-page":"649","article-title":"20-year survival of children born with congenital anomalies: A population-based study","volume":"375","author":"Tennant PWG","year":"2010","unstructured":"Tennant PWG, Pearce MS, Bythell M, Rankin J. 20-year survival of children born with congenital anomalies: A population-based study. Lancet Lond Engl. 2010;375 (9715): 649-656. doi:10.1016\/S0140-6736(09)61922-X."},{"issue":"1","key":"b8","series-title":"J Dev Behav Pediatr","first-page":"e20","article-title":"Psychosocial adjustment in emerging adults with and without spina bifida: A 14-year follow-up study","volume":"43","author":"Holmbeck GN","year":"2022","unstructured":"Holmbeck GN, Kritikos TK. Psychosocial adjustment in emerging adults with and without spina bifida: A 14-year follow-up study. J Dev Behav Pediatr. 2022;43 (1):e20-e28. doi:10.1097\/DBP.0000000000000956."},{"issue":"4","key":"b9","series-title":"J Pediatr Rehabil Med","first-page":"457","article-title":"Preface to the special issue for the guidelines for the care of people with spina bifida","volume":"13","author":"Dicianno BE","year":"2020","unstructured":"Dicianno BE, Dosa N, Beierwaltes P. Preface to the special issue for the guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 457-459. doi:10.3233\/PRM-200691."},{"issue":"2","key":"b10","series-title":"Disabil Health J","first-page":"100816","article-title":"Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association","volume":"13","author":"Dicianno BE","year":"2020","unstructured":"Dicianno BE, Beierwaltes P, Dosa N et al. Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association. Disabil Health J. 2020;13 (2):100816. doi:10.1016\/j.dhjo.2019.06.005."},{"issue":"4","key":"b11","series-title":"J Pediatr Rehabil Med","first-page":"423","article-title":"Spina bifida transition to adult healthcare guidelines","volume":"12","author":"Fremion EJ","year":"2019","unstructured":"Fremion EJ, Dosa NP. Spina bifida transition to adult healthcare guidelines. J Pediatr Rehabil Med. 2019;12 (4): 423-429. doi:10.3233\/PRM-190633."},{"key":"b12","article-title":"Guidelines for the Care of People with Spina Bifida","author":"Spina Bifida Association","year":"2018","unstructured":"Spina Bifida Association. Guidelines for the Care of People with Spina Bifida. 2018. http:\/\/www.spinabifidaassociation.org\/guidelines\/."},{"issue":"4","key":"b13","series-title":"Int J Child Adolesc Health","first-page":"595","article-title":"Testing the transition preparation training program: A randomized controlled trial","volume":"3","author":"Betz CL","year":"2010","unstructured":"Betz CL, Smith K, Macias K. Testing the transition preparation training program: A randomized controlled trial. Int J Child Adolesc Health. 2010;3(4):595-607."},{"issue":"3","key":"b14","series-title":"J Pediatr Rehabil Med","first-page":"235","article-title":"Testing the Transition Preparation Training Program: Well-being of relationships outcomes","volume":"8","author":"Betz CL","year":"2015","unstructured":"Betz CL, Smith KA, Macias K, Deavenport-Saman A. Testing the Transition Preparation Training Program: Well-being of relationships outcomes. J Pediatr Rehabil Med. 2015;8 (3): 235-246. doi:10.3233\/PRM-150340."},{"issue":"6","key":"b15","series-title":"Am J Phys Med Rehabil","first-page":"425","article-title":"Feasibility of using mobile health to promote self-management in spina bifida","volume":"95","author":"Dicianno BE","year":"2016","unstructured":"Dicianno BE, Fairman AD, McCue M et al. Feasibility of using mobile health to promote self-management in spina bifida. Am J Phys Med Rehabil. 2016;95 (6): 425-437. doi:10.1097\/PHM.0000000000000400."},{"issue":"12","key":"b16","series-title":"Dev Med Child Neurol","first-page":"1392","article-title":"Camp\u2010based psychosocial intervention dosage and changes in independence in young people with spina bifida","volume":"61","author":"Driscoll CFB","year":"2019","unstructured":"Driscoll CFB, Murray CB, Holbein CE, Stiles\u2010Shields C, Cuevas G, Holmbeck GN. Camp\u2010based psychosocial intervention dosage and changes in independence in young people with spina bifida. Dev Med Child Neurol. 2019;61 (12): 1392-1399. doi:10.1111\/dmcn.14250."},{"issue":"4","key":"b17","series-title":"J Pediatr Psychol","first-page":"412","article-title":"A camp-based psychosocial intervention to promote independence and social function in individuals with spina bifida: moderators of treatment effectiveness","volume":"38","author":"Holbein CE","year":"2013","unstructured":"Holbein CE, Murray CB, Psihogios AM et al. A camp-based psychosocial intervention to promote independence and social function in individuals with spina bifida: moderators of treatment effectiveness. J Pediatr Psychol. 2013;38 (4): 412-424. doi:10.1093\/jpepsy\/jst003."},{"issue":"7","key":"b18","series-title":"Ann Intern Med","first-page":"467","article-title":"PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation","volume":"169","author":"Tricco AC","year":"2018","unstructured":"Tricco AC, Lillie E, Zarin W et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169 (7): 467-473. doi:10.7326\/M18-0850."},{"issue":"1","key":"b19","series-title":"Int J Soc Res Methodol","first-page":"19","article-title":"Scoping studies: towards a methodological framework","volume":"8","author":"Arksey H","year":"2005","unstructured":"Arksey H, O\u2019Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8 (1): 19-32. doi:10.1080\/1364557032000119616."},{"key":"b20","series-title":"Implement Sci","first-page":"69","article-title":"Scoping studies: Advancing the methodology","volume":"5","author":"Levac D","year":"2010","unstructured":"Levac D, Colquhoun H, O\u2019Brien KK. Scoping studies: Advancing the methodology. Implement Sci. 2010, 5:69. doi:10.1186\/1748-5908-5-69."},{"issue":"6","key":"b21","series-title":"J Pediatr Urol","first-page":"800.e1","article-title":"Establishing the first community-centered spina bifida research agenda","volume":"18","author":"Struwe S","year":"2022","unstructured":"Struwe S, Thibadeau J, Kelly MS, Widener-Burrows D. Establishing the first community-centered spina bifida research agenda. J Pediatr Urol. 2022;18 (6):800.e1-800.e7. doi:10.1016\/j.jpurol.2022.06.014."},{"key":"b22","author":"Covidence","unstructured":"Covidence. Accessed March 13, 2024. https:\/\/app.covidence.org\/sign_in."},{"key":"b23","series-title":"J Pediatr Nurs","first-page":"44","article-title":"Nurse-led eHealth transition care program for adolescents with spina bifida: A feasibility and acceptability study","volume":"67","author":"Choi EK","year":"2022","unstructured":"Choi EK, Bae E, Yun H. Nurse-led eHealth transition care program for adolescents with spina bifida: A feasibility and acceptability study. J Pediatr Nurs. 2022, 67: 44-51. doi:10.1016\/j.pedn.2022.07.004."},{"key":"b24","series-title":"World Neurosurg","first-page":"e1455","article-title":"Telemedicine and spina bifida transition: A pilot randomized trial","volume":"167","author":"Kuhn EN","year":"2022","unstructured":"Kuhn EN, Hopson B, Shamblin I, Maleknia PD, Rocque BG. Telemedicine and spina bifida transition: A pilot randomized trial. World Neurosurg. 2022, 167:e1455-e1460. doi:10.1016\/j.wneu.2022.09.076."},{"issue":"4","key":"b25","series-title":"Disabil Health J","first-page":"101508","article-title":"The impact of a health care transition clinic on spina bifida condition management and transition planning","volume":"16","author":"Manohar S","year":"2023","unstructured":"Manohar S, Staggers KA, Huang X, Castillo J, Castillo H, Fremion E. The impact of a health care transition clinic on spina bifida condition management and transition planning. Disabil Health J. 2023;16 (4):101508. doi:10.1016\/j.dhjo.2023.101508."},{"issue":"5","key":"b26","series-title":"J Pediatr Nurs","first-page":"395","article-title":"Use of the anal plug in the treatment of fecal incontinence in patients with meningomyelocele","volume":"23","author":"Shoshan L","year":"2008","unstructured":"Shoshan L, Ben-Zvi D, Katz-Leurer M. Use of the anal plug in the treatment of fecal incontinence in patients with meningomyelocele. J Pediatr Nurs. 2008;23 (5): 395-399. doi:10.1016\/j.pedn.2006.09.006."},{"issue":"2","key":"b27","series-title":"Phys Occup Ther Pediatr","first-page":"176","article-title":"Occupation based telerehabilitation intervention for adolescents with myelomeningocele: A pilot study","volume":"41","author":"Steinhart S","year":"2021","unstructured":"Steinhart S, Raz-Silbiger S, Beeri M, Gilboa Y. Occupation based telerehabilitation intervention for adolescents with myelomeningocele: A pilot study. Phys Occup Ther Pediatr. 2021;41(2):176-191. doi:10.1080\/01942638.2020.1807448."},{"issue":"6","key":"b28","series-title":"J Int Neuropsychol Soc","first-page":"672","article-title":"Goal management training of executive functions in patients with spina bifida: A randomized controlled trial","volume":"19","author":"Stubberud J","year":"2013","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Goal management training of executive functions in patients with spina bifida: A randomized controlled trial. J Int Neuropsychol Soc. 2013;19 (6): 672-685. doi:10.1017\/S1355617713000209."},{"issue":"1","key":"b29","series-title":"Neuropsychol Rehabil","first-page":"26","article-title":"Goal Management Training improves everyday executive functioning for persons with spina bifida: Self and informant reports six months post-training","volume":"24","author":"Stubberud J","year":"2014","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Goal Management Training improves everyday executive functioning for persons with spina bifida: Self and informant reports six months post-training. Neuropsychol Rehabil. 2014;24 (1): 26-60. doi:10.1080\/09602011.2013.847847."},{"issue":"1","key":"b30","series-title":"Rehabil Psychol","first-page":"1","article-title":"Emotional health and coping in spina bifida after goal management training: A randomized controlled trial","volume":"60","author":"Stubberud J","year":"2015","unstructured":"Stubberud J, Langenbahn D, Levine B, Stanghelle J, Schanke AK. Emotional health and coping in spina bifida after goal management training: A randomized controlled trial. Rehabil Psychol. 2015;60 (1): 1-16. doi:10.1037\/rep0000018."},{"issue":"1","key":"b31","series-title":"Comput Inform Nurs","first-page":"24","article-title":"Computer-mediated support for adolescents with cerebral palsy or spina bifida","volume":"29","author":"Barnfather A","year":"2011","unstructured":"Barnfather A, Stewart M, Magill-Evans J, Ray L, Letourneau N. Computer-mediated support for adolescents with cerebral palsy or spina bifida. Comput Inform Nurs. 2011;29 (1): 24-33. doi:10.1097\/NCN.0b013e3181f9db63."},{"issue":"3","key":"b32","series-title":"Inform Prim Care","first-page":"113","article-title":"Growing up with confidence: Using telehealth to support continence self-care deficits amongst young people with complex needs","volume":"21","author":"Levy S","year":"2014","unstructured":"Levy S, Henderson L, McAlpine C. Growing up with confidence: Using telehealth to support continence self-care deficits amongst young people with complex needs. Inform Prim Care. 2014;21 (3): 113-117. doi:10.14236\/jhi.v21i3.58."},{"issue":"6","key":"b33","series-title":"J Pediatr Health Care","first-page":"627","article-title":"Developing a transition care coordination program for youth with spina bifida","volume":"31","author":"Seeley A","year":"2017","unstructured":"Seeley A, Lindeke L. Developing a transition care coordination program for youth with spina bifida. J Pediatr Health Care. 2017;31 (6): 627-633. doi:10.1016\/j.pedhc.2017.04.015."},{"issue":"4","key":"b34","series-title":"J Adolesc","first-page":"795","article-title":"Brief report: An online support intervention: Perceptions of adolescents with physical disabilities","volume":"34","author":"Stewart M","year":"2011","unstructured":"Stewart M, Barnfather A, Magill-Evans J, Ray L, Letourneau N. Brief report: An online support intervention: Perceptions of adolescents with physical disabilities. J Adolesc. 2011;34 (4): 795-800. doi:10.1016\/j.adolescence.2010.04.007."},{"issue":"6","key":"b35","series-title":"J Spinal Cord Med","first-page":"977","article-title":"Using a mobile health app in a weight management program for overweight and obese adolescents and young adults with spina bifida","volume":"47","author":"Bent MA","year":"2024","unstructured":"Bent MA, Valenzuela-Moss JN, Smith KA et al. Using a mobile health app in a weight management program for overweight and obese adolescents and young adults with spina bifida. J Spinal Cord Med. 2024;47 (6): 977-986. doi:10.1080\/10790268.2023.2231675."},{"key":"b36","series-title":"mHealth","first-page":"15","article-title":"Retrospective evaluation of a pilot eHealth\/mHealth telewellness program for people with disabilities: Mindfulness, Exercise, and Nutrition To Optimize Resilience (MENTOR)","volume":"8","author":"Rimmer JH","year":"2022","unstructured":"Rimmer JH, Wilroy J, Galea P, Jeter A, Lai BW. Retrospective evaluation of a pilot eHealth\/mHealth telewellness program for people with disabilities: Mindfulness, Exercise, and Nutrition To Optimize Resilience (MENTOR). mHealth. 2022, 8: 15-15. doi:10.21037\/mhealth-21-34."},{"key":"b37","series-title":"Int J Telerehabilitation","article-title":"Outcomes of clinicians, caregivers, family members and adults with spina bifida regarding receptivity to use of the iMHere mHealth solution to promote wellness","author":"Fairman AD","year":"2013","unstructured":"Fairman AD, Dicianno BE, Datt N, Garver A, Parmanto B, McCue M. Outcomes of clinicians, caregivers, family members and adults with spina bifida regarding receptivity to use of the iMHere mHealth solution to promote wellness. Int J Telerehabilitation. Published online June 11, 2013. doi:10.5195\/ijt.2013.6116."},{"issue":"22","key":"b38","series-title":"Int J Environ Res Public Health","first-page":"8316","article-title":"Octopus watch fosters family resilience by enhancing occupational engagement for children with spina bifida and\/or hydrocephalus: Pilot study","volume":"17","author":"Jennings M","year":"2020","unstructured":"Jennings M, Guilfoyle A, Green J, Cleary Y, Gowran RJ. Octopus watch fosters family resilience by enhancing occupational engagement for children with spina bifida and\/or hydrocephalus: Pilot study. Int J Environ Res Public Health. 2020;17 (22):8316. doi:10.3390\/ijerph17228316."},{"issue":"11","key":"b39","series-title":"Disabil Rehabil","first-page":"1136","article-title":"Impact of a person-centred community rehabilitation service on outcomes for individuals with a neurological condition","volume":"39","author":"Barker RN","year":"2017","unstructured":"Barker RN, Sealey CJ, Polley ML, Mervin MC, Comans T. Impact of a person-centred community rehabilitation service on outcomes for individuals with a neurological condition. Disabil Rehabil. 2017;39 (11): 1136-1142. doi:10.1080\/09638288.2016.1185803."},{"key":"b40","series-title":"J Pediatr Nurs","first-page":"e54","article-title":"A 2-step integrative education program and mhealth for self-management in Korean children with spina bifida: Feasibility study","volume":"49","author":"Choi EK","year":"2019","unstructured":"Choi EK, Jung E, Ji Y, Bae E. A 2-step integrative education program and mhealth for self-management in Korean children with spina bifida: Feasibility study. J Pediatr Nurs. 2019, 49:e54-e62. doi:10.1016\/j.pedn.2019.09.002."},{"issue":"1","key":"b41","series-title":"Scand J Occup Ther","first-page":"64","article-title":"Children with myelomeningocele and independence in the toilet activity: A pilot study","volume":"20","author":"Donlau M","year":"2013","unstructured":"Donlau M, Mattsson S, Glad-Mattsson G. Children with myelomeningocele and independence in the toilet activity: A pilot study. Scand J Occup Ther. 2013;20 (1): 64-70. doi:10.3109\/11038128.2012.700729."},{"issue":"8","key":"b42","series-title":"J Pediatr Psychol","first-page":"848","article-title":"A camp-based intervention targeting independence among individuals with spina bifida","volume":"35","author":"O\u2019Mahar K","year":"2010","unstructured":"O\u2019Mahar K, Holmbeck GN, Jandasek B, Zukerman J. A camp-based intervention targeting independence among individuals with spina bifida. J Pediatr Psychol. 2010;35 (8): 848-856. doi:10.1093\/jpepsy\/jsp125."},{"issue":"10","key":"b43","series-title":"Disabil Rehabil","first-page":"1152","article-title":"A community-based exercise program to increase participation in physical activities among youth with disability: A feasibility study","volume":"41","author":"Shields N","year":"2019","unstructured":"Shields N, van den Bos R, Buhlert-Smith K, Prendergast L, Taylor N. A community-based exercise program to increase participation in physical activities among youth with disability: A feasibility study. Disabil Rehabil. 2019;41 (10): 1152-1159. doi:10.1080\/09638288.2017.1422034."},{"issue":"4","key":"b44","series-title":"Neuropsychol Rehabil","first-page":"601","article-title":"The feasibility and acceptability of goal management training of executive functions in children with spina bifida and acquired brain injury","volume":"31","author":"Stubberud J","year":"2021","unstructured":"Stubberud J, Holthe IL, L\u00f8vstad M, Schanke AK, Brandt A, Finnanger T. The feasibility and acceptability of goal management training of executive functions in children with spina bifida and acquired brain injury. Neuropsychol Rehabil. 2021;31 (4): 601-620. doi:10.1080\/09602011.2020.1723649."},{"issue":"1","key":"b45","series-title":"J Occup Rehabil","first-page":"42","article-title":"Improved occupational performance of young adults with a physical disability after a vocational rehabilitation intervention","volume":"24","author":"Verhoef JAC","year":"2014","unstructured":"Verhoef JAC, Roebroeck ME, Van Schaardenburgh N, Floothuis MCSG, Miedema HS. Improved occupational performance of young adults with a physical disability after a vocational rehabilitation intervention. J Occup Rehabil. 2014;24 (1): 42-51. doi:10.1007\/s10926-013-9446-9."},{"issue":"11","key":"b46","series-title":"Arch Phys Med Rehabil","first-page":"1969","article-title":"Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system","volume":"97","author":"Dicianno BE","year":"2016","unstructured":"Dicianno BE, Lovelace J, Peele P et al. Effectiveness of a wellness program for individuals with spina bifida and spinal cord injury within an integrated delivery system. Arch Phys Med Rehabil. 2016;97 (11):1969-1978. doi:10.1016\/j.apmr.2016.05.014."},{"issue":"5","key":"b47","series-title":"Disabil Rehabil","first-page":"822","article-title":"The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida \u2013 a randomized controlled trial","volume":"45","author":"Peny-Dahlstrand M","year":"2023","unstructured":"Peny-Dahlstrand M, Hofgren C, Lindquist B et al. The Cognitive Orientation to daily Occupational Performance (CO-OP) Approach is superior to ordinary treatment for achievement of goals and transfer effects in children with cerebral palsy and spina bifida \u2013 a randomized controlled trial. Disabil Rehabil. 2023;45(5):822-831. doi:10.1080\/09638288.2022.2043459."},{"issue":"19","key":"b48","series-title":"Disabil Rehabil","first-page":"2758","article-title":"Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities","volume":"43","author":"King G","year":"2021","unstructured":"King G, McPherson AC, Kingsnorth S et al. Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities. Disabil Rehabil. 2021;43 (19): 2758-2768. doi:10.1080\/09638288.2020.1716864."},{"issue":"14","key":"b49","series-title":"Disabil Rehabil","first-page":"3097","article-title":"Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities","volume":"46","author":"King G","year":"2024","unstructured":"King G, Kingsnorth S, McPherson AC, Tajik-Parvinchi D. Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities. Disabil Rehabil. 2024;46 (14): 3097-3107. doi:10.1080\/09638288.2023.2243222."},{"issue":"10","key":"b50","series-title":"Disabil Rehabil","first-page":"2079","article-title":"Benefits of residential immersive life skills programs: A prospective study of autonomy and self-efficacy gains and sex differences in youth with disability","volume":"46","author":"Tajik-Parvinchi D","year":"2024","unstructured":"Tajik-Parvinchi D, Kingsnorth S, King G. Benefits of residential immersive life skills programs: A prospective study of autonomy and self-efficacy gains and sex differences in youth with disability. Disabil Rehabil. 2024;46 (10): 2079-2088. doi:10.1080\/09638288.2023.2216474."},{"issue":"3","key":"b51","series-title":"PALAESTRA","article-title":"Psychosocial development of participants with disabilities throughout a reverse-integrated wheelchair basketball program","volume":"27","author":"Hutzler Y","year":"2013","unstructured":"Hutzler Y, Chacham-Guber A, Reiter S. Psychosocial development of participants with disabilities throughout a reverse-integrated wheelchair basketball program. PALAESTRA. 2013;27 (3). Accessed March 9, 2024. https:\/\/js.sagamorepub.com\/index.php\/palaestra\/article\/view\/5062."},{"issue":"1","key":"b52","series-title":"Aust Occup Ther J","first-page":"2","article-title":"Wheelchair skills training programme for children: A pilot study","volume":"59","author":"Sawatzky B","year":"2012","unstructured":"Sawatzky B, Rushton PW, Denison I, McDonald R. Wheelchair skills training programme for children: A pilot study. Aust Occup Ther J. 2012;59 (1): 2-9. doi:10.1111\/j.1440-1630.2011.00964.x."},{"key":"b53","series-title":"J Pediatr Nurs","first-page":"30","article-title":"Program evaluation of Camp V.I.P: Promoting self-confidence and independence for patients with spina bifida","volume":"47","author":"Zimmerman K","year":"2019","unstructured":"Zimmerman K, Williams M, Arynchyna A et al. Program evaluation of Camp V.I.P: Promoting self-confidence and independence for patients with spina bifida. J Pediatr Nurs. 2019, 47: 30-35. doi:10.1016\/j.pedn.2019.04.014."},{"issue":"2","key":"b54","series-title":"Disabil Rehabil","first-page":"228","article-title":"Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: A feasibility study","volume":"42","author":"Peny-Dahlstrand M","year":"2020","unstructured":"Peny-Dahlstrand M, Bergqvist L, Hofgren C, Himmelmann K, \u00d6hrvall AM. Potential benefits of the cognitive orientation to daily occupational performance approach in young adults with spina bifida or cerebral palsy: A feasibility study. Disabil Rehabil. 2020;42 (2): 228-239. doi:10.1080\/09638288.2018.1496152."},{"issue":"25","key":"b55","series-title":"Disabil Rehabil","first-page":"3645","article-title":"\u201cWith CO-OP I'm the boss\u201d - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida","volume":"42","author":"\u00d6hrvall AM","year":"2020","unstructured":"\u00d6hrvall AM, Bergqvist L, Hofgren C, Peny-Dahlstrand M. \u201cWith CO-OP I'm the boss\u201d - experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida. Disabil Rehabil. 2020;42 (25): 3645-3652. doi:10.1080\/09638288.2019.1607911."},{"key":"b56","series-title":"J Pediatr Nurs","first-page":"e92","article-title":"Two-step integrative education program and mHealth for Korean children with spina bifida: A quasi-experimental pre-post study","volume":"51","author":"Choi EK","year":"2020","unstructured":"Choi EK, Jung E, Bae E, Ji Y, Lee A. Two-step integrative education program and mHealth for Korean children with spina bifida: A quasi-experimental pre-post study. J Pediatr Nurs. 2020, 51:e92-e99. doi:10.1016\/j.pedn.2019.12.006."},{"issue":"2","key":"b57","series-title":"Can J Occup Ther","first-page":"82","article-title":"The Canadian Occupational Performance Measure: An outcome measure for occupational therapy","volume":"57","author":"Law M","year":"1990","unstructured":"Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. The Canadian Occupational Performance Measure: An outcome measure for occupational therapy. Can J Occup Ther. 1990;57 (2): 82-87. doi:10.1177\/000841749005700207."},{"key":"b58","article-title":"Delis-Kaplan Executive Function System","author":"Delis DC","year":"2012","unstructured":"Delis DC, Kaplan E, Kramer JH. Delis-Kaplan Executive Function System. Published online October 8, 2012. doi:10.1037\/t15082-000."},{"key":"b59","series-title":"Psychological Assessment Resources","article-title":"Behaviour Rating Inventory of Executive Function: Professional Manual","author":"Gioia GA","year":"2000","unstructured":"Gioia GA, Isquith PK, Guy SC, Kenworthy L. Behaviour Rating Inventory of Executive Function: Professional Manual. Psychological Assessment Resources; 2000."},{"key":"b60","series-title":"Methodology of Frontal and Executive Function","article-title":"Behavioural assessment of the dysexecutive syndrome","author":"Wilson BA","year":"1997","unstructured":"Wilson BA, Evans JJ, Alderman N, Burgess PW, Emslie H. Behavioural assessment of the dysexecutive syndrome. In: Methodology of Frontal and Executive Function. Routledge; 1997."},{"key":"b61","series-title":"Goal Attainment Scaling: Applications, Theory, and Measurement","first-page":"308","volume":"xviii","year":"1994","unstructured":"Goal Attainment Scaling: Applications, Theory, and Measurement. Lawrence Erlbaum Associates, Inc; 1994: xviii, 308."},{"issue":"10","key":"b62","series-title":"Qual Life Res","first-page":"1727","article-title":"Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)","volume":"20","author":"Herdman M","year":"2011","unstructured":"Herdman M, Gudex C, Lloyd A et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20 (10): 1727-1736. doi:10.1007\/s11136-011-9903-x."},{"issue":"2","key":"b63","series-title":"Qual Life Res","first-page":"123","article-title":"Development of a health-related quality of life instrument for use in children with spina bifida","volume":"6","author":"Parkin PC","year":"1997","unstructured":"Parkin PC, Kirpalani HM, Rosenbaum PL et al. Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res. 1997;6 (2): 123-132. doi:10.1023\/A:1026486016212."},{"issue":"3","key":"b64","series-title":"Expert Rev Pharmacoecon Outcomes Res","first-page":"353","article-title":"KIDSCREEN-52 quality-of-life measure for children and adolescents","volume":"5","author":"Ravens-Sieberer U","year":"2005","unstructured":"Ravens-Sieberer U, Gosch A, Rajmil L et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5 (3): 353-364. doi:10.1586\/14737167.5.3.353."},{"issue":"2","key":"b65","series-title":"Med Care","first-page":"126","article-title":"The PedsQL: Measurement model for the pediatric quality of life inventory","volume":"37","author":"Varni JW","year":"1999","unstructured":"Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care. 1999;37 (2): 126-139. doi:10.1097\/00005650-199902000-00003,"},{"key":"b66","author":"PROMIS","unstructured":"PROMIS. Accessed March 18, 2025. https:\/\/www.healthmeasures.net\/explore-measurement-systems\/promis,"},{"issue":"3","key":"b67","series-title":"Cent Eur J Urol","first-page":"306","article-title":"Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida","volume":"70","author":"Szyma\u2010ski KM","year":"2017","unstructured":"Szyma\u2010ski KM, Misseri R, Whittam Bet al., Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida. Cent Eur J Urol. 2017;70 (3): 306-313. doi:10.5173\/ceju.2017.1195,"},{"key":"b68","series-title":"Quality of Life Questionnaire Standardization Manual","author":"Schalock RL","year":"1990","unstructured":"Schalock RL, Keith KD, Hoffman K. Quality of Life Questionnaire Standardization Manual. Mid-Nebraska Mental Retardation Services; 1990."},{"issue":"4","key":"b69","series-title":"J Pediatr Gastroenterol Nutr","first-page":"557","article-title":"The IMPACT Questionnaire: A valid measure of health-related quality of life in pediatric inflammatory bowel disease","volume":"35","author":"Otley A","year":"2002","unstructured":"Otley A, Smith C, Nicholas D et al. The IMPACT Questionnaire: A valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2002;35 (4): 557."},{"issue":"1","key":"b70","series-title":"Rehabil Psychol","first-page":"98","article-title":"The Kennedy Krieger Independence Scales\u2013Spina Bifida Version: A measure of executive components of self-management","volume":"58","author":"Jacobson LA","year":"2013","unstructured":"Jacobson LA, Tarazi RA, McCurdy MD et al. The Kennedy Krieger Independence Scales\u2013Spina Bifida Version: A measure of executive components of self-management. Rehabil Psychol. 2013;58 (1): 98-105. doi:10.1037\/a0031555."},{"issue":"6","key":"b71","series-title":"J Pediatr Psychol","first-page":"698","article-title":"Factor structure of medical autonomy scales in young people with spina bifida","volume":"46","author":"Smith ZR","year":"2021","unstructured":"Smith ZR, Holmbeck GN. Factor structure of medical autonomy scales in young people with spina bifida. J Pediatr Psychol. 2021;46 (6): 698-709. doi:10.1093\/jpepsy\/jsab013."},{"issue":"4","key":"b72","series-title":"J Pediatr Rehabil Med","first-page":"405","article-title":"Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida","volume":"12","author":"Wood D","year":"2019","unstructured":"Wood D, Rocque B, Hopson B, Barnes K, Johnson KR. Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. J Pediatr Rehabil Med. 2019;12 (4): 405-413. doi:10.3233\/PRM-180595."},{"issue":"1","key":"b73","series-title":"J Perinat Educ","first-page":"22","article-title":"Sexuality issues in adolescents with a chronic neurological condition","volume":"11","author":"Sawin KJ","year":"2002","unstructured":"Sawin KJ, Buran CF, Brei TJ, Fastenau PS. Sexuality issues in adolescents with a chronic neurological condition. J Perinat Educ. 2002;11 (1): 22-34. doi:10.1624\/105812402X88579."},{"issue":"1","key":"b74","series-title":"Disabil Health J","first-page":"100940","article-title":"Self-management and spina bifida: A systematic review of the literature","volume":"14","author":"Sawin KJ","year":"2021","unstructured":"Sawin KJ, Margolis RHF, Ridosh MM et al. Self-management and spina bifida: A systematic review of the literature. Disabil Health J. 2021;14 (1):100940. doi:10.1016\/j.dhjo.2020.100940."},{"issue":"1","key":"b75","series-title":"J Particip Med","article-title":"Decision-making for parents of children with medical complexities: Activity theory analysis","volume":"14","author":"Buchanan F","year":"2022","unstructured":"Buchanan F, Lai C, Cohen E, Milo-Manson G, Shachak A. Decision-making for parents of children with medical complexities: Activity theory analysis. J Particip Med. 2022;14 (1):e31699. doi:10.2196\/31699."},{"issue":"4","key":"b76","series-title":"J Pediatr Rehabil Med","first-page":"525","article-title":"Mental health guidelines for the care of people with spina bifida","volume":"13","author":"Kritikos TK","year":"2020","unstructured":"Kritikos TK, Smith K, Holmbeck GN. Mental health guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 525-534. doi:10.3233\/PRM-200719."},{"issue":"2","key":"b77","series-title":"Sex Med Rev","first-page":"244","article-title":"Sexual function of men and women with spina bifida: A scoping literature review","volume":"9","author":"Streur CS","year":"2021","unstructured":"Streur CS, Corona L, Smith JE, Lin M, Wiener JS, Wittmann DA. Sexual function of men and women with spina bifida: A scoping literature review. Sex Med Rev. 2021;9(2):244-266. doi:10.1016\/j.sxmr.2020.09.001."},{"issue":"2","key":"b78","series-title":"Eur J Gen Pract","first-page":"138","article-title":"Setting goals in chronic care: Shared decision making as self-management support by the family physician","volume":"21","author":"Lenzen SA","year":"2015","unstructured":"Lenzen SA, Dani\u00ebls R, van Bokhoven MA, van der Weijden T, Beurskens A. Setting goals in chronic care: Shared decision making as self-management support by the family physician. Eur J Gen Pract. 2015;21 (2): 138-144. doi:10.3109\/13814788.2014.973844."},{"issue":"1","key":"b79","series-title":"Syst Rev","first-page":"155","article-title":"A systematic review of decision aids that facilitate elements of shared decision-making in chronic illnesses: A review protocol","volume":"6","author":"Wieringa TH","year":"2017","unstructured":"Wieringa TH, Kunneman M, Rodriguez-Gutierrez R et al. A systematic review of decision aids that facilitate elements of shared decision-making in chronic illnesses: A review protocol. Syst Rev. 2017;6 (1):155. doi:10.1186\/s13643-017-0557-9."},{"key":"b80","series-title":"Front Pediatr","first-page":"782104","article-title":"Psychological interventions for individuals with acquired brain injury, cerebral palsy, and spina bifida: A scoping review","volume":"10","author":"Jefferies M","year":"2022","unstructured":"Jefferies M, Peart T, Perrier L, Lauzon A, Munce S. Psychological interventions for individuals with acquired brain injury, cerebral palsy, and spina bifida: A scoping review. Front Pediatr. 2022, 10:782104. doi:10.3389\/fped.2022.782104."},{"key":"b81","series-title":"Disabil Rehabil","first-page":"1","article-title":"Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida","author":"\u00d6hrvall AM","year":"2023","unstructured":"\u00d6hrvall AM, Hofgren C, Lindquist B, et al. Intervention with the CO-OP Approach leads to a transfer effect over time to untrained goals for children with cerebral palsy or spina bifida. Disabil Rehabil. Published online June 23, 2023: 1-10. doi:10.1080\/09638288.2023.2225875."},{"key":"b82","series-title":"Transl Issues Psychol Sci.","first-page":"11","article-title":"Culturally responsive scalable mental health interventions: A call to action","volume":"2022","author":"Alvarez JC","unstructured":"Alvarez JC, Waitz-Kudla S, Brydon C, Crosby E, Witte TK. Culturally responsive scalable mental health interventions: A call to action. Transl Issues Psychol Sci. Published online 2022:11-11."},{"issue":"11","key":"b83","series-title":"Ann Behav Med","first-page":"805","article-title":"Precision health: The role of the social and behavioral sciences in advancing the vision","volume":"54","author":"Hekler E","year":"2020","unstructured":"Hekler E, Tiro JA, Hunter CM, Nebeker C. Precision health: The role of the social and behavioral sciences in advancing the vision. Ann Behav Med. 2020;54 (11): 805-826. doi:10.1093\/abm\/kaaa018."},{"issue":"3","key":"b84","series-title":"Top Spinal Cord Inj Rehabil","first-page":"59","article-title":"Supporting the transition to adulthood for youth with spina bifida: A call for neuropsychology-informed interventions","volume":"28","author":"Bradstreet LE","year":"2022","unstructured":"Bradstreet LE, Ludwig N, Koterba C, Zabel TA, Wilson CS. Supporting the transition to adulthood for youth with spina bifida: A call for neuropsychology-informed interventions. Top Spinal Cord Inj Rehabil. 2022;28 (3): 59-62. doi:10.46292\/sci21-00096."},{"issue":"2","key":"b85","series-title":"Child Neuropsychol J Norm Abnorm Dev Child Adolesc","first-page":"299","article-title":"The role of the neuropsychologist across the stages of recovery from acquired brain injury: A summary from the pediatric rehabilitation neuropsychology collaborative","volume":"29","author":"Watson WD","year":"2023","unstructured":"Watson WD, Lahey S, Baum KT et al. The role of the neuropsychologist across the stages of recovery from acquired brain injury: A summary from the pediatric rehabilitation neuropsychology collaborative. Child Neuropsychol J Norm Abnorm Dev Child Adolesc. 2023;29 (2): 299-320. doi:10.1 080\/09297049.2022.2086691."},{"issue":"6","key":"b86","series-title":"Health Psychol","first-page":"767","article-title":"A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury","volume":"31","author":"Wade SL","year":"2012","unstructured":"Wade SL, Walz NC, Carey J et al. A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury. Health Psychol. 2012;31 (6): 767-776. doi:10.1037\/a0028440."},{"issue":"9","key":"b87","series-title":"Am J Public Health","first-page":"e14","article-title":"The association between race\/ethnicity and major birth defects in the United States, 1999\u20132007","volume":"104","author":"Canfield MA","year":"2014","unstructured":"Canfield MA, Mai CT, Wang Y et al. The association between race\/ethnicity and major birth defects in the United States, 1999\u20132007. Am J Public Health. 2014;104 (9):e14-e23. doi:10.2105\/AJPH.2014.302098."},{"issue":"2","key":"b88","series-title":"Pediatr Nurs","first-page":"98","article-title":"Health professional expectations for self-care skill development in youth with spina bifida","volume":"36","author":"Greenley RN","year":"2010","unstructured":"Greenley RN. Health professional expectations for self-care skill development in youth with spina bifida. Pediatr Nurs. 2010;36(2):98-102."},{"issue":"4","key":"b89","series-title":"J Pediatr Rehabil Med","first-page":"583","article-title":"Self-management and independence guidelines for the care of people with spina bifida","volume":"13","author":"Logan LR","year":"2020","unstructured":"Logan LR, Sawin KJ, Bellin MH, Brei T, Woodward J. Self-management and independence guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13 (4): 583-600. doi:10.3233\/PRM-200734."},{"issue":"4","key":"b90","series-title":"Clin Neuropsychol","first-page":"585","article-title":"Age-related differences in executive function among children with spina bifida\/hydrocephalus based on parent behavior ratings","volume":"22","author":"Tarazi RA","year":"2008","unstructured":"Tarazi RA, Zabel TA, Mahone EM. Age-related differences in executive function among children with spina bifida\/hydrocephalus based on parent behavior ratings. Clin Neuropsychol. 2008;22 (4): 585-602. doi:10.1080\/13854040701425940."},{"issue":"5","key":"b91","series-title":"West J Nurs Res","first-page":"478","article-title":"A center experience with common data elements in chronic illness self-management research","volume":"45","author":"Bauer WS","year":"2023","unstructured":"Bauer WS, Schiffman RF. A center experience with common data elements in chronic illness self-management research. West J Nurs Res. 2023;45 (5): 478-485. doi:10.1177\/01939459221144851."},{"issue":"3","key":"b92","series-title":"J Nurs Scholarsh","first-page":"249","article-title":"feasibility of combining common data elements across studies to test a hypothesis","volume":"49","author":"Corwin EJ","year":"2017","unstructured":"Corwin EJ, Moore SM, Plotsky A et al. feasibility of combining common data elements across studies to test a hypothesis. J Nurs Scholarsh. 2017;49 (3): 249-258. doi:10.1111\/jnu.12287."},{"key":"b93","article-title":"National Institutes of Health (NIH)","author":"INCLUDE Project","unstructured":"INCLUDE Project. National Institutes of Health (NIH). Accessed March 10, 2024. https:\/\/www.nih.gov\/include-project."},{"issue":"4","key":"b94","series-title":"J Pediatr Rehabil Med","first-page":"323","article-title":"The development of a lifetime care model in comprehensive spina bifida care","volume":"11","author":"Hopson B","year":"2018","unstructured":"Hopson B, Rocque BG, Joseph DB et al. The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323-334. doi:10.3233\/PRM-180548."},{"issue":"2","key":"b95","series-title":"Disabil Health J","first-page":"100833","article-title":"Survey of U.S. adults with spina bifida","volume":"13","author":"Morley CP","year":"2020","unstructured":"Morley CP, Struwe S, Pratte MA et al. Survey of U.S. adults with spina bifida. Disabil Health J. 2020;13 (2):100833. doi:10.1016\/j.dhjo.2019.100833."}],"container-title":["Topics in Spinal Cord Injury Rehabilitation"],"original-title":[],"link":[{"URL":"https:\/\/tscir.kglmeridian.com\/view\/journals\/tscr\/32\/1\/article-p110.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/meridian.allenpress.com\/tscir\/article-pdf\/32\/1\/110\/3550414\/i1945-5763-32-1-110.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/tscir.kglmeridian.com\/downloadpdf\/journals\/tscr\/32\/1\/article-p110.xml","content-type":"text\/html","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/tscir.kglmeridian.com\/downloadpdf\/journals\/tscr\/32\/1\/article-p110.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T15:51:03Z","timestamp":1775145063000},"score":1,"resource":{"primary":{"URL":"https:\/\/tscir.kglmeridian.com\/view\/journals\/tscr\/32\/1\/article-p110.xml"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,1]]},"references-count":190,"journal-issue":{"issue":"1"},"URL":"https:\/\/doi.org\/10.46292\/sci25-00046","relation":{},"ISSN":["1082-0744","1945-5763"],"issn-type":[{"value":"1082-0744","type":"print"},{"value":"1945-5763","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1]]}}}