{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,21]],"date-time":"2025-08-21T18:28:25Z","timestamp":1755800905156,"version":"3.41.2"},"reference-count":34,"publisher":"Oxford University Press (OUP)","issue":"6","license":[{"start":{"date-parts":[[2025,4,14]],"date-time":"2025-04-14T00:00:00Z","timestamp":1744588800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"name":"Inclusive Society"},{"DOI":"10.13039\/501100004489","name":"Mitacs","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004489","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Office franco-qu\u00e9b\u00e9cois pour la jeunesse"},{"name":"Centre for Interdisciplinary Research in Rehabilitation and Social Integration"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,5,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background and Objectives<\/jats:title>\n                  <jats:p>Thanks to medical advances, the life expectancy of people with spina bifida and\/or hydrocephalus (SB\/H) has increased considerably. However, little is known about their experience of aging, and few resources exist to support their transition into older age and to promote an active and fulfilling aging process. This study thus aimed to describe the changes and needs of people aging with SB\/H.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Research Design and Methods<\/jats:title>\n                  <jats:p>This qualitative descriptive study is the initial phase of an action research project designed to develop a toolkit to support transitioning to older age with SB\/H. To explore changes and needs associated with aging, semi-structured interviews were conducted with 23 people living with SB\/H in Canada. A thematic content analysis based on the Framework Method was conducted using an inductive approach. The COREQ checklist was used to promote explicit and comprehensive reporting of the results.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Changes associated with aging covered 3 themes: participation (e.g., mobility, leisure, domestic activities, employment), physical functioning, and psychological functioning. Participants experienced psychological changes differently (e.g., increased resilience or anxiety). Regarding participants\u2019 needs, 6 themes were identified: preserving health and well-being; maintaining participation; accessing the built and natural environment; awareness and education about aging with SB\/H; information and access to health care services; and social and community services.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion and Implications<\/jats:title>\n                  <jats:p>The results highlight the diversity of aging experiences among people living with SB\/H. A better understanding of their needs will support inclusive practices aimed at promoting lifelong participation and fostering transitions to active and fulfilling aging.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/geront\/gnaf101","type":"journal-article","created":{"date-parts":[[2025,4,14]],"date-time":"2025-04-14T12:36:02Z","timestamp":1744634162000},"source":"Crossref","is-referenced-by-count":1,"title":["Changes and Needs Experienced by People Aging With Spina Bifida and Hydrocephalus"],"prefix":"10.1093","volume":"65","author":[{"given":"Lucie","family":"Gattaz","sequence":"first","affiliation":[{"name":"Institut des Sciences et Techniques de R\u00e9adaptation, Universit\u00e9 Claude Bernard Lyon 1 , Lyon ,","place":["France"]},{"name":"Department of Occupational Therapy, Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res , Trois-Rivi\u00e8res, Qu\u00e9bec ,","place":["Canada"]},{"name":"Centre for Interdisciplinary Research in Rehabilitation and Social Integration \u2013 Centre int\u00e9gr\u00e9 universitaire de sant\u00e9 et de services sociaux de la Capitale-Nationale , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie-Christine","family":"Ouellet","sequence":"additional","affiliation":[{"name":"Centre for Interdisciplinary Research in Rehabilitation and Social Integration \u2013 Centre int\u00e9gr\u00e9 universitaire de sant\u00e9 et de services sociaux de la Capitale-Nationale , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]},{"name":"School of Psychology, Universit\u00e9 Laval , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]},{"name":"Centre for Studies and Interventions in Mental Health, Universit\u00e9 Laval , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samuel","family":"Turcotte","sequence":"additional","affiliation":[{"name":"Centre for Interdisciplinary Research in Rehabilitation and Social Integration \u2013 Centre int\u00e9gr\u00e9 universitaire de sant\u00e9 et de services sociaux de la Capitale-Nationale , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]},{"name":"School of Rehabilitation Sciences, Faculty of Medicine, Universit\u00e9 Laval , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurence","family":"Leser","sequence":"additional","affiliation":[{"name":"Association de spina-bifida et d\u2019hydroc\u00e9phalie du Qu\u00e9bec , Montr\u00e9al, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shauna","family":"Beaudoin","sequence":"additional","affiliation":[{"name":"Hydrocephalus Canada , Toronto, Ontario ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Cairns","sequence":"additional","affiliation":[{"name":"School of Psychology, Universit\u00e9 Laval , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Camille","family":"Gagnon","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy, Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res , Trois-Rivi\u00e8res, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Camille","family":"Comtois","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy, Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res , Trois-Rivi\u00e8res, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah-Jeanne","family":"Comtois","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy, Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res , Trois-Rivi\u00e8res, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Val\u00e9rie","family":"Poulin","sequence":"additional","affiliation":[{"name":"Department of Occupational Therapy, Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res , Trois-Rivi\u00e8res, Qu\u00e9bec ,","place":["Canada"]},{"name":"Centre for Interdisciplinary Research in Rehabilitation and Social Integration \u2013 Centre int\u00e9gr\u00e9 universitaire de sant\u00e9 et de services sociaux de la Capitale-Nationale , Qu\u00e9bec City, Qu\u00e9bec ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2025,4,14]]},"reference":[{"issue":"1","key":"2025052611014272300_CIT0001","doi-asserted-by":"publisher","first-page":"e24","DOI":"10.2105\/AJPH.2015.302902","article-title":"Global birth prevalence of spina bifida by folic acid fortification status: A systematic review and 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