Changes and Needs Experienced by People Aging With Spina Bifida and Hydrocephalus

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.

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.

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' 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.

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.