Development of an educational programme for caregivers of people aging with multiple sclerosis

This article describes a three-phase project to identify and develop an occupational therapy response to the challenges experienced by caregivers of middle-aged and older adults with multiple sclerosis (MS). In Phase 1 302 caregivers of middle-aged and older adults with MS were interviewed by telephone to identify the care-giving challenges they experienced. A total of eight challenges were identified, with the four most prevalent ones including finding and using formal support services, managing the emotional aspects of caregiving, doing the physical aspects of care-giving and dealing with informal supports. In Phase 2 a comprehensive literature review was conducted to identify existing caregiver education programmes that could be used to address these challenges. None of the 21 programmes that were located addressed all of the challenges identified through the Phase 1 interviews. In response, a new five-session psycho-educational group programme entitled 'Meeting the Challenges of MS' was developed in Phase 3. The programme was empirically grounded in Phase 1 findings, and drew on theory to guide group process and sequencing. The findings from Phases 1 and 2 and the resulting programme cannot be generalized to caregivers of younger adults with MS, although the steps taken to develop this programme have the potential for replication with other populations served by occupational therapists.