||multiple sclerosis, MS, psychological well-being, financial situation, social support, caregiver experiences, stresses, physical well-being, social life, quality of life
Background: A number of people with multiple sclerosis (MS) may need to receive some type of assistance from a caregiver (e.g., family member). In spite of the fact that caregivers for individuals with MS may experience distress, only a few studies have focused on the issue.
Objectives: To review studies on the needs and experiences of caregivers of people with MS.
Search strategy: Electronic searches were conducted by using the following databases: CINAHL, BIDS, IBSS, ASSIA, MEDLINE, PSYCHINFO, British Nursing Index, ISI Web of Science Citation Index, Zetox, & allied AMED. Keywords used include the combinations of multiple sclerosis and the following terms: carer, carers, informal carer, informal carers, caregivers, caregiver, informal caregiver, informal caregivers, support systems, carers needs, caregiver burden, and caregiver support.
Selection criteria: The authors included studies on caregivers of people with MS published in English between 1990 and April 2002.
Data collection and analysis: The authors conducted a qualitative review and assessed the methodological quality of each study.
Main results: Of 24 studies included in the review, 13 studies used surveys; 9 conducted individual interviews; and employed focus group interviews. A number of studies identified a significant amount of time spent by carers in assisting individuals with MS. It was noted that providing care affects the caregivers’ physical well-being, psychological well-being, social life, and financial situation. In addition, the authors reported carers’ strategies for coping with the impacts and support systems for caregivers.
Conclusions: The findings suggest caregivers’ need for support to manage the demands of their roles. More rigorous and scientific research on interventions for caregivers is needed. In addition, the authors noted the need for the development of disease-specific assessment instruments, which are valid and reliable for caregivers.