A Needs Assessment to Inform the Development of a Dyadic Physical Activity Intervention for Caregiver Care Recipient Dyads with Moderate-to-Severe Multiple Sclerosis Disability

Abstract

The impact of multiple sclerosis (MS) extends beyond the person who has the disease to his/her family caregivers. One of the rehabilitation strategies to manage some of the disease impact on the health of both partners is increasing participation in physical activity. Yet, physical activity interventions in MS rarely focus on people with moderate-to-severe MS disability or target dyads. The overall purpose of this dissertation was to determine if there is sufficient evidence to support the development of a dyadic physical activity intervention for people with moderate-to-severe MS disability and their family caregivers. Guided by the Developmental Contextual Coping Model and the Concerns Report Methodology, three studies were conducted as part of this dissertation. First, a qualitative focus group study was conducted to explore the shared perspectives of the dyads about physical activity. Next, a cross-sectional accelerometry study was conducted to determine physical activity pattern interdependence within the dyads. Finally, a cross-sectional survey study was conducted to determine the needs, issues and concerns for community resources to support physical activity participation, factors associated with perceived need and barriers to sole- versus co-participation in physical activity among the target groups. The results indicate that structured and unstructured physical activity are not perceived as mutually exclusive and each partner can go back and forth along the continuum depending on current circumstances. Physical activity was described an interpersonal experience with caregivers and care-recipients sharing similar struggles, frustrations and adjustments when trying to be physically active. The results also show that both people with moderate-to-severe MS disability and their caregivers are far below the public health recommendations for physical activity. Findings highlight the critical need for a multilevel resource that incorporates affordable options for exercising together and innovative methods of outreach to people with moderate-to-severe MS disability and the caregivers who support them. A broad range of predisposing, enabling and health need factors were associated with perceived need for community resources. The variability in barriers to sole- versus co-participation in physical activity among people with MS and their caregivers suggest that the success of dyadic physical activity interventions in MS may be contingent upon adequate diminution of care-recipients and caregivers unique barriers.