Completed Research Project
Assessing supportive care delivery to those affected by neurodegenerative diseases and their families
Investigators: Kristjanson
L, White
K, Toye C, Yates P, Wollin J, Hudson P, Oldham
L,
Dawson, S.
Funding: National Health and Medical Research
Council ($150,000)
Abstract: This study was conducted in three states in Australia to assess the extent to which existing models of supportive care service delivery met the needs of people living with Multiple Sclerosis, Motor Neurone Disease, Huntington’s disease and Parkinson’s disease, and their families. This study was coordinated from Edith Cowan University by Professor Linda Kristjanson. The objective was to determine the factors considered important at the end of life by patients, their families, physicians and other care providers. The results have implications for extending palliative care services to families of people with degenerative neurological conditions. The study comprised two phases: Phase 1 was a qualitative study involving interviews with 130 patients, carers and service providers. Phase 2 consisted of a large national survey with a total of 503 patients and 373 carers responding from three states, Western Australia, Victoria and Queensland. This study has provided the first empirical evidence on the needs and service use of these special groups and will form the basis for future developments of palliative and supportive care services for people with these four neurological conditions. It has also laid the foundations for subsequent evaluation of service provision to this community. The results highlighted the need for novel, tailored and flexible models of care for these groups with unique care requirements.
