Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study

• Published in: Disability and rehabilitation Vol. 25; no. 18; p. 1057
• Main Authors: Rivera-Navarro, Jesús, Morales-González, José Manuel, Benito-León, Julián
• Format: Journal Article
• Language: English
• Published: England 16.09.2003
• Subjects: Activities of Daily Living; Adult; Caregivers - psychology; Caregivers - statistics & numerical data; Employment - statistics & numerical data; Female; Humans; Logistic Models; Longitudinal Studies; Male; Multiple Sclerosis - psychology; Multiple Sclerosis - rehabilitation; Quality of Life; Sex Distribution; Social Support; Spain; Spouses - statistics & numerical data; Surveys and Questionnaires; Time Factors; Spain
• ISSN: 0963-8288
• DOI: 10.1080/0963828031000137766

To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.