Beyond MS: A Workshop for Families Living With MS

Background: In MSQLP’s case management work with MS client’s plus family members, we have observed a lack of understanding about what it is actually like to live with MS. With the newly diagnosed, the MS client and their family members experience anxiety and unanswered questions. As time passes, there is almost a reverse phenomenon: MS touches everyone’s lives but over time empathetic feelings are stretched, putting all family members at risk. Families often become vulnerable and marginalized. The chronic and unpredictable nature of MS results in tremendous demands on the coping skills of individuals with MS as well as their families. The impact on the partnership includes high risk of marital discord, separation and divorce. The impact on the children includes high risk for social and academic difficulties, feelings of isolation, and depression.

Objectives: To increase resilience and to decrease the distress and potential fragmentation of families, the individual with MS and their family members were offered the opportunity to participate in workshops that will increase their understanding of what it is to be a "family with MS", gaining a healthy understanding in order to move forward with improved coping skills, thus improving their quality of life.

Methods: A biopsychosocial educational workshop addressing the concerns and needs of clients and their families was offered in August 2012 and January 2013. Over 20 families participated. A Modified Social Support Survey & Mental Health Inventory was filled out by people with MS at the start of the workshop and 4 weeks post-workshop. A Modified Caregiver Strain Index was completed by family members, friends, and caregivers at the start of the workshop and 4 weeks after. A program evaluation was completed by all at the end of each workshop.

Results: Analysis of pre- and post-workshop indices will be presented as well as the overall evaluation by participants. Positive feedback has been received. Comments made by the first group of participants were used in the presentation of the second workshop.

Conclusions: A workshop providing lecture, literature, resources, experiential exercises, group discussion and Q&A can be valuable in increasing the family’s knowledge of types of MS, symptom management, risks and benefits of DMTs, how to communicate with HCPs, ways to increase psychosocial coping skills, the promotion of health and wellness strategies, and ways to improve family functioning and resilience.

Supported by: Biogen Idec Inc and the Multiple Sclerosis Foundation