The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review

Primary objective: To appraise recent studies regarding the needs and experiences of caregivers of individuals with multiple sclerosis (MS). Design: The following computerized databases were searched: CINAHL, BIDS IBSS, ASSIA, MEDLINE, PSYCHINFO, British Nursing Index, ISI Web of Science, Zetoc, AMED (1990-April 2002). The computer-based search was supplemented by manual searches of the reference lists of all retrieved studies and review articles. Inclusion and exclusion criteria were formulated. Results: Twenty-four studies from across the world that met the inclusion criteria were reviewed. The majority of studies were descriptive in nature. The studies covered a variety of topics, including how carers assist people with MS, the effect of providing care on a carer's physical and psychological wellbeing, social life, financial situation and overall quality of life, and how carers cope with the stresses of providing care. Conclusions: Providing care for a person with MS has a major impact on all areas of the caregiver's life. Perceived social support has been shown to have a beneficial impact on the caregiver. Limitations in design and variation in methodology of studies limits the generalizability of findings. There is a need for further research, in particular the development of reliable and valid disease-specific caregiver assessment instruments.