La Trobe

Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis

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journal contribution
posted on 2024-09-05, 23:33 authored by Lee CubisLee Cubis, S McDonald, P Dean, R Ramme, Kate D'CruzKate D'Cruz, Megan Ciara ToppingMegan Ciara Topping, F Fisher, Dianne WinklerDianne Winkler, Jacinta DouglasJacinta Douglas
Background: People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods: Using the Knowledge to Action (KTA) framework, quantitative (n = 79) and qualitative (n = 6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results: High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion: People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.

Funding

This work was supported by MS Australia (grant number 22-168).

History

Publication Date

2024-08-02

Journal

Brain Impairment

Volume

25

Article Number

IB23102

Pagination

18p.

Publisher

CSIRO Publishing

ISSN

1443-9646

Rights Statement

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).