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Measures used to assess burden among caregivers of stroke patients: a review

Rehabilitation Centre De Hoogstraat and Rudolf Magnus Institute of Neuroscience, University Medical Center, Utrecht, The Netherlands

Marcel W M Post

Rehabilitation Centre De Hoogstraat and Rudolf Magnus Institute of Neuroscience, University Medical Center, Utrecht; iRv, Institute for Rehabilitation Research, Hoensbroek, The Netherlands

Ingrid I Riphagen

Vrije University, Medical Library, Amsterdam, The Netherlands

Eline Lindeman

Rehabilitation Centre De Hoogstraat and Rudolf Magnus Institute of Neuroscience, University Medical Center, Utrecht, The Netherlands

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties.

Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness.

Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures.

Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.

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