Understanding Diverse Caregiver Experiences and Their Impact on Caregiver Burden in Multiple Sclerosis.

Abstract

BACKGROUND: For 80% of people living with multiple sclerosis (MS), informal care is provided by a caregiver. Caregivers spend an average of 6.5 hours a day providing care, which equates to nearly full-time, unpaid work. Although it is widely accepted that informal caregivers play an essential support role in the lives of people with MS, there is a general paucity of MS caregiver research. The findings of the few available research studies are often interpreted from a clinical perspective, without consideration of the many sociocultural aspects that produce a widely heterogeneous population of caregivers and care recipients. For many caregivers, caregiving can be accompanied by considerable burden, which can have a negative impact on their mental and physical health. However, with the lack of diverse caregiver research available, the full extent of the caregiver experience, burdens, and unmet needs is still relatively unknown. In this review, we discuss the key contributing factors to caregiver burden in MS across diverse caregiving groups, identify gaps in our understanding of caregiving responsibilities as they contribute to caregiver burden, and discuss potential strategies and interventions to reduce caregiver burden. We examine these topics from the clinician, caregiver, and care recipient perspectives.