The Challenge

Stroke is the leading cause of adult neurological disability in Ontario. Up to 87% of stroke survivors face some form of neurological disability that restricts their daily living activities.

Upon completion of their treatment, stroke survivors are discharged into their communities with minimal amounts of support. This places enormous stress on the both the stroke survivor and caregiver. To help ease the burden on survivors and caregivers, the Ontario Self-Help Network (OSHNET) received funding to develop self-help groups for stroke survivors and caregivers as they cope with daily living in their communities. The project focused on northern and rural communities where there are limited resources and services.

Action Taken

During the first phase of the project, a booklet titled “Self-Help Groups for Stroke Victims” was produced. Written in an easy-to-read format, the booklet provided tips for common challenges faced by stroke survivors as well as information on starting a self-help group.

A consultant hired for the second phase of the project used the booklets, along with supplementary resources and training, to support three existing self-help groups and to establish three new groups. The type of support provided to the groups included:

meeting with community support service staff or stroke survivors to plan the establishment of a new group or identify areas where existing groups require assistance
establishing group email lists that enabled the group participants to network and share ideas
providing training, consultation and support to groups as needed
sponsoring community support services staff to attend a training session on self-help groups
distributing information on aphasia

The approach taken made optimal use of limited resources while building on the strengths and capacities of stroke survivors and caregivers. Informal feedback from group participants was positive; they felt that the groups were an effective means of support that helped them to realize they were not alone and that others were living with stroke in the community.

Implications for Practice

The process of establishing self-help groups for stroke survivors and their caregivers generated a number of lessons and insights common to self-help groups.

While self-help groups are run for, and by, group members (as opposed to groups facilitated by a professional change agent), an outside facilitator or consultant is often helpful for establishing a new group.

Each self-help group is unique; the support provided to self-help groups therefore needs to be sensitive to the diversity of group needs and experiences.

Most of the ‘work’ required takes place during the start-up phase; the amount of support needed to sustain groups beyond this phase is minimal.

Linking self-help groups to larger ‘umbrella’ agencies such as Community Support Service agencies is important for ensuring long-term sustainability.