Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023
Limited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for ind...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-01-01
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| Series: | Health Care Transitions |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949923224000011 |
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| author | Jennifer Emilie Mannino Heather Reens Kathryn Smith Lynn Kysh Serge' R. Nelson Yuding Wang Manu Raam Michele Roland Alexander Van Speybroeck Cecily L. Betz |
| author_facet | Jennifer Emilie Mannino Heather Reens Kathryn Smith Lynn Kysh Serge' R. Nelson Yuding Wang Manu Raam Michele Roland Alexander Van Speybroeck Cecily L. Betz |
| author_sort | Jennifer Emilie Mannino |
| collection | DOAJ |
| description | Limited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for individuals with spina bifida and their families and the health care professionals who provide services to this population. Given the paucity of knowledge of the lived experience as it pertains to adulthood, this scoping review was undertaken. More than 10,000 records from 1974 through 2023 were screened based upon the search criteria whose purpose was to examine the research conducted the psychosocial outcomes and needs of adults with spina bifida. A total of 81 articles were included in this review. The findings of this review revealed significant gaps were apparent. There was limited data on adulthood benchmarks of employment, education, community living and social relationships. Limitations associated with the investigations of this review included underpowered samples, lack of longitudinal designs, use of instruments with insufficient psychometrics, and the use of clinical and administrative data sets not designed for research purposes. As the survival rates of individuals with spina bifida continue to improve with medical advances more robust psychosocial research pertaining to this population is needed. |
| format | Article |
| id | doaj-art-e9c8464b00554c4c82769b9cfed0b205 |
| institution | OA Journals |
| issn | 2949-9232 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Health Care Transitions |
| spelling | doaj-art-e9c8464b00554c4c82769b9cfed0b2052025-08-20T02:07:31ZengElsevierHealth Care Transitions2949-92322024-01-01210004110.1016/j.hctj.2024.100041Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023Jennifer Emilie Mannino0Heather Reens1Kathryn Smith2Lynn Kysh3Serge' R. Nelson4Yuding Wang5Manu Raam6Michele Roland7Alexander Van Speybroeck8Cecily L. Betz9Barbara H. Hagan School of Nursing and Health Sciences, Molloy University, Rockville Centre, NY, USA; Corresponding author.Barbara H. Hagan School of Nursing and Health Sciences, Molloy University, Rockville Centre, NY, USADepartment of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA, USAUC Davis William Blaisdell Medical Library, Sacramento, CA, USAHumanities Healthcare Solutions, Pasadena, CA, USAChildren's Hospital of Eastern Ontario, Ottawa, Ontario, CanadaShriners Children's Southern California, Pasadena, CA, USADepartment of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA, USADepartment of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA, USADepartment of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, CA, USALimited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for individuals with spina bifida and their families and the health care professionals who provide services to this population. Given the paucity of knowledge of the lived experience as it pertains to adulthood, this scoping review was undertaken. More than 10,000 records from 1974 through 2023 were screened based upon the search criteria whose purpose was to examine the research conducted the psychosocial outcomes and needs of adults with spina bifida. A total of 81 articles were included in this review. The findings of this review revealed significant gaps were apparent. There was limited data on adulthood benchmarks of employment, education, community living and social relationships. Limitations associated with the investigations of this review included underpowered samples, lack of longitudinal designs, use of instruments with insufficient psychometrics, and the use of clinical and administrative data sets not designed for research purposes. As the survival rates of individuals with spina bifida continue to improve with medical advances more robust psychosocial research pertaining to this population is needed.http://www.sciencedirect.com/science/article/pii/S2949923224000011AdultPsychosocialReview of literatureScoping ReviewSpina Bifida |
| spellingShingle | Jennifer Emilie Mannino Heather Reens Kathryn Smith Lynn Kysh Serge' R. Nelson Yuding Wang Manu Raam Michele Roland Alexander Van Speybroeck Cecily L. Betz Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 Health Care Transitions Adult Psychosocial Review of literature Scoping Review Spina Bifida |
| title | Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 |
| title_full | Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 |
| title_fullStr | Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 |
| title_full_unstemmed | Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 |
| title_short | Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023 |
| title_sort | psychosocial needs and outcomes of adults with spina bifida a scoping review 1974 2023 |
| topic | Adult Psychosocial Review of literature Scoping Review Spina Bifida |
| url | http://www.sciencedirect.com/science/article/pii/S2949923224000011 |
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