Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge

Area of Science:

• Neurology
• Caregiver Support
• Health Services Research

Background:

• Unpaid caregivers, often family and friends, provide essential support to individuals with multiple sclerosis (MS).
• Understanding caregiver experiences, needs, and challenges is vital for effective support systems.
• Current knowledge gaps hinder the development of adequate support for MS caregivers.

Purpose of the Study:

• To map the existing body of knowledge on unpaid caregivers of people with MS.
• To identify gaps in research and practice concerning MS caregiver support.
• To guide future research and interventions for this population.

Main Methods:

• A scoping review methodology was employed.
• Searches were conducted across MEDLINE, CINAHL, and APA Psychinfo databases.
• Peer-reviewed articles on primary studies of unpaid MS caregivers were selected and analyzed.

Main Results:

• 108 studies published between 1992 and 2021 met the inclusion criteria, with spousal caregivers being the most studied group.
• Research predominantly focused on caregiver burden and negative consequences, with limited exploration of positive aspects (13 studies).
• Few studies detailed specific caregiver tasks (16 studies), outcomes of support interventions (7 studies), or addressed diversity issues.

Conclusions:

• Knowledge regarding unpaid caregivers of people with MS is limited.
• Further research is needed on caregiver tasks, diversity impacts, and effective interventions to alleviate caregiver burden.
• Addressing these gaps is critical for developing better support strategies for MS caregivers.