Spina Bifida and aging: co-development of a toolbox

Research title: How to tame and live the transition to active and fulfilling aging for people with spina bifida, hydrocephalus and their caregivers: co-development of a toolbox

Abstract

People living with spina bifida and/or hydrocephalus (SBH) face issues of aging that can complicate the challenges of social participation. Yet, the needs associated with these transitions remain unknown and few resources exist. The Quebec Spina Bifida and Hydrocephalus Association (ASBHQ) wishes to accompany its members, their loved ones, and caregivers to promote active and fulfilling aging. This action-research, involving an iterative process of codesign with a variety of participatory methods (e.g. personas, scenarios), will allow: 1) to explore the experiences of aging from the perspective of the social participation of people living with SBH; 2) to identify priority needs and strategies for active and fulfilling aging; 3) to co-develop – with people living with SBH, their loved ones, and caregivers – a toolbox of these strategies; and 4) to proceed with a pilot evaluation of this toolbox. Ultimately, the project will contribute to promoting inclusive practices that take into account the diversity of aging experiences of these people.

Goals

This project aims to

1) Document the experiences of aging, from the perspective of social participation, as perceived by people living with SBH and their families;

2) Identify priority needs and strategies for active and fulfilling aging;

3) To co-develop – with people living with SBH, their families and caregivers – a toolbox containing these strategies;

4) Conduct a pilot evaluation of these tools.

Milestones

1. Training of the steering committee and ethical certification
2. Discovery of the issues and strategies surrounding the aging of people with SBH (planning and holding of workshops 1 and 2).
3. Definition of priority issues (planning and holding of Workshop 3).
4. Co-design of tools (planning and delivery of workshops 4 and 5).
5. Toolkit delivery and pilot evaluation (planning and conducting Workshop 6)
6. Knowledge Transfer Activities