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Informal carer activities, carer burden and health status in multiple sclerosis

King's College London, The Florence Nightingale School of Nursing & Midwifery, London, UK, angus.forbes{at}kcl.ac.uk

Alison While

King's College London, The Florence Nightingale School of Nursing & Midwifery, London, UK

Lucia Mathes

King's College London, The Florence Nightingale School of Nursing & Midwifery, London, UK

Objective : To explore the contribution of carer characteristics, activities and disease impact to care burden and health in the multiple sclerosis caregiver population.

Design : A prospective postal survey (24 months).

Setting : The study was conducted in seven treatment centres within England.

Subjects : Two hundred and fifty-seven caregivers of people with multiple sclerosis.

Measures : Carer activity, the Caregivers Reaction Assessment Scale (CRA), the Short Form General Health Survey (SF-36), version 2, and care-related health problems. The carer data were linked to a comprehensive patient data set which permitted dyadic variables to be created measuring shared health.

Results : Carers were engaged in a wide spectrum of physical care activities; lifting was the most frequent, 74% (n = 192). Patient disease impact scores were positively correlated (P < 0.01) with higher carer activity levels (r = 0.66). The carer activity level increased over time (P < 0.001 ) by around 5% with a mean increase of 0.22 (95% confidence interval (CI) 0.12—0.3) in the carer activity summary score (scale 0—4). Disease impact was negatively correlated (P < 0.01) with carer burden r = — 0.44 (CRA composite scale), physical health status r = —0.27 (SF-36 physical component score) and mental health status r = — 0.21 (SF-36 mental component score); and positively correlated with care-related health problems r = 0.44. Hierarchical regression models explaining 39% and 49% of the variance in care burden and health problem respectively showed that disease impact and dyadic health explained most of the variance, with carer activity contributing an additional 2% to 4% of the variance (P < 0.001).

Conclusion : The analysis demonstrated that greater disease impact, lower dyadic health, high carer activity and greater carer burden are related to the level of carer-related health problems. The data suggested the need to develop interventions for assessing carers and reducing their activity levels and care burden (objective and subjective).

Clinical Rehabilitation, Vol. 21, No. 6, 563-575 (2007)
DOI: 10.1177/0269215507075035


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