Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers

Aronson, K. J., Cleghorn, Geoffrey J., & Goldenberg, E. (1996) Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disability and Rehabilitation, 18(7), pp. 354-361.

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A large population-based survey of persons with multiple sclerosis (MS) and their caregivers was conducted in Ontario using self-completed mailed questionnaires. The objectives included describing assistance arrangements, needs, and use of and satisfaction with services, and comparing perceptions of persons with MS and their caregivers. Response rates were 83% and 72% for those with MS and caregivers, respectively. Based on 697 respondents with MS whose mean age is 48 years, 70% are female, and 75% are married. While 24% experience no mobility restrictions, the majority require some type of aid or a wheelchair for getting around. Among 345 caregivers, who have been providing care for 9 years on average, the majority are spouses. Caregivers report providing more frequent care than do persons with MS report receiving it, particularly for the following activities of daily living: eating, meal preparation, and help with personal finances. Caregivers also report assistance of longer duration per day than do care recipients with MS. Frequency and duration of assistance are positively associated with increased MS symptom severity and reduced mobility. Generally there is no rural-urban disparity in service provision, utilization or satisfaction, and although there is a wide range of service utilization, satisfaction is consistently high. Respite care is rarely used by caregivers. Use of several services is positively associated with increased severity of MS symptoms and reduced mobility. Assistance arrangements and use of services, each from the point of view of persons with MS and their caregivers, must be taken into account in efforts to prolong home care and to postpone early institutionalization of persons with MS.

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ID Code: 90005
Item Type: Journal Article
Refereed: Yes
Additional Information: Cited By :49
Export Date: 1 September 2015
Correspondence Address: Aronson, K.J.; Community Health and Epidemiology, Queen's University, Kingston, Ont. K7L 3N6, Canada
Keywords: Caregivers, Epidemiology, Multiple sclerosis, adult, article, canada, caregiver, daily life activity, eating, female, health care delivery, health care utilization, home care, human, major clinical study, male, patient satisfaction, priority journal, questionnaire, spouse, symptom, walking aid, wheelchair, Activities of Daily Living, Aged, Cross-Sectional Studies, Demography, Home Nursing, Humans, Life Style, Middle Aged, Ontario, Questionnaires, Rural Population, Self Care, Self-Help Groups, Urban Population
DOI: 10.3109/09638289609165894
ISSN: 0963-8288
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Exercise & Nutrition Sciences
Deposited On: 13 Nov 2015 00:12
Last Modified: 13 Nov 2015 00:15

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