Completed Research Project
An Investigation into the Home Support Needs of Adults Living with Multiple Sclerosis, Huntington’s, Parkinson’s and Motor Neurone Diseases.
Investigators: Silver Chain (G Lewin, and M Giles) and cross agency groups, and Curtin University Aoun S.
Funding Body: Lotterywest Social Research Grant ($178,025)
Administering Institution: Silver Chain Hospice Care Service
The purpose of this project was to provide home and community care providers, planners and policy makers with information that will assist them to better understand the current and future needs of individuals (and their families/carers) living with Multiple Sclerosis, Huntington’s, Parkinson’s And Motor Neurone Diseases, in the community. Three questions were addressed by this research: Who are the people with these conditions? What is the natural progression of their condition and how does this affect them and their carers/families? And how does this translate into the need for services to support their quality of life and; ability to remain living in the community?
The project employed mixed methods including: a survey of individuals living with one of the diseases of interest and their carers; in-depth interviews with clients, carers, providers and other stakeholders; case studies; and, a data linkage exercise to try to quantify the home care services currently being provided to people with these diagnoses.
The project is a multi-agency collaboration between seven of Western Australia’s largest providers of home care to people with these conditions, i.e. Silver Chain, Perth Home Care, Mercy Care, Brightwater, Alzheimer’s WA, Neurological Council and the MS Society of WA.
The other key stakeholders in the provision of support to individuals living with these conditions, i.e. the condition-specific support groups, disability services and neurosciences are all also involved with the project and are members of the project steering group. The project also has a State Advisory Panel whose membership includes those individuals involved in determining, or with the potential to influence, policy and planning in regard to services for these groups.
