ArticleThe Gerontologist2025
Changes and Needs Experienced by People Aging With Spina Bifida and Hydrocephalus.
Article in The Gerontologist, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Authors and funding
10 authors.
Funding
Abstract
BACKGROUND AND
objectivesThanks 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. RESEARCH DESIGN AND
methodsThis 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.
resultsChanges 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' 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. DISCUSSION AND IMPLICATIONS: 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.
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