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

Area of Science:

• Gerontology
• Rehabilitation Medicine
• Public Health

Background:

• Medical advances have increased life expectancy for individuals with spina bifida and/or hydrocephalus (SB/H).
• Limited understanding exists regarding the aging experiences and specific needs of this population.
• Few resources are available to support their transition into older age.

Purpose of the Study:

• To describe the changes and needs of people aging with SB/H.
• To inform the development of resources supporting active and fulfilling aging in this demographic.

Main Methods:

• Qualitative descriptive study involving semi-structured interviews with 23 individuals with SB/H in Canada.
• Thematic content analysis using the Framework Method with an inductive approach.
• Adherence to COREQ checklist for comprehensive reporting.

Main Results:

• Aging changes were identified across three themes: participation (mobility, leisure, domestic activities, employment), physical functioning, and psychological functioning.
• Participants reported varied psychological changes, including increased resilience or anxiety.
• Six key needs were identified: preserving health, maintaining participation, environmental accessibility, education on aging with SB/H, healthcare access, and social/community services.

Conclusions:

• Aging experiences among individuals with SB/H are diverse.
• Understanding these diverse needs is crucial for developing inclusive practices.
• This knowledge supports lifelong participation and facilitates transitions to active, fulfilling aging.