Guide to setting up a Stroke Support Group

 
Stroke support groups provide help, information and a social outlet for stroke survivors, their families and friends.  They also enable survivors to share experiences that can be vital in dealing with the effects of stroke.
 
The Irish Heart Foundation has produced this guide to help you create and grow a support group in your area.  It aims to give you a format for planning, developing, staffing and facilitating a stroke support group. 
 
 

Objectives of a Support Group

Each group may have different aims e.g. information providers or a social club, but here are some common objectives to focus on:
  • Promote a positive outlook to rehabilitation;
  • Encourage survivors and their families to create realistic expectations of self care;
  • Provide a supportive environment that helps members to accept their changed life;
  • Provide information on stroke, dispel myths around stroke and where possible provide professional guidance;
  • Allow members to share their experiences and coping strategies with others;
  • Provide a simple, informal format to the meetings;
  • Provide a mix of physical, mental and emotional stimulation that fosters adaptation.

Support Group Settings

Acute setting - Some support groups will meet in the acute environment, i.e. the hospital or rehabilitation centre.  The organiser is usually an employee of the facility.  There are advantages to this as you have direct access to in-patients and their families. 

Community setting - Support groups best serve those that have gone through acute rehabilitation and are back home facing new challenges of life after stroke.  Ideally, organisers would collaborate with a healthcare institution but hold the group in a community setting.  While people are hospitalised they can then be referred on to the support group in their community avoid any relapse in support to them upon discharge.

Starting Out

Steering committee – whether you are working with an existing group or setting up a new group a steering committee can help in testing ideas and sharing the work of developing the group.  The group can share the workload because starting a new group may take considerable time and leadership.  While dedicated volunteers are essential it is also important to have the input of a healthcare professional.  This person could be the key organiser, but the committee could have other rehabilitation specialists or other people who work with stroke survivors like social workers. 

This committee will have responsibility for all the organisational and administrative functions for the group such as;
  • Secure a meeting location for the group;
  • Develop a referral base from hospitals and rehab centres;
  • Recruiting and selecting facilitators and volunteers;
  • Marketing the concept within the community through local media channels, letters to local newspapers, through the IHF stroke.ie website and social media pages;
  • Ensuring members are kept up-to-date with meeting times and topics.

Potential Members

It is important to understand the number of stroke survivors in the community to evaluate the necessity of a new support group.  The following questions need to be asked about these potential stroke survivors;
  • How many of them have returned to the community?
  • What are the demographics (rough estimate where exact figures are not available)?
  • Do most people live near the hospitals or do they travel long distances?
  • Where do most of them receive their rehabilitation?  In the NRH or locally?
A consultation with the nearest acute hospital and/or rehabilitation facility/long term care ward would answer most of these questions.   This is a necessary step to determine that there is a base of stroke survivors in the community.  The focus groups will also help to determine if this base of individuals has an interest in participating in a new group. Read the full guide for more information on holding focus groups or a public meeting. 

Promotion 

Support groups promotion should be incorporated into the overall strategy from the very beginning and key to this is finding more than one method to get the message out.  Repeated reminders keep the message fresh in people’s memory.  This needs to be discussed at the first meeting of the steering committee, each member should come up with a way that they can promote the group.  Remember that you have several audiences to hit with your promotional efforts; healthcare professionals, stroke survivors and their families, and other member of the community.

Some publicity suggestions;
Posters – in GP surgeries, primary care centres, pharmacies, libraries, local shops, community centres, sports clubs and citizen information centres.
Flyers - distribute these in the waiting areas in hospitals and at the above locations.
Press releases – for local newspapers and newsletters and church bulletins.
Letters to the editor of your local newspapers.
Feature articles – raising awareness to stroke and the importance of support groups as cost – effective rehabilitation.
Speak at other local organisations’ meetings like Active retirement groups or the Rotary Club.

Regardless of the how you promote the group, frequency is important to remind people of its existence. 

Facilitators

All persons chosen as facilitators should have a general knowledge of stroke and its potential complications, both physical and emotional. 
The facilitators role is group development and to provide and maintain structure for every group session, and for the group as a whole. 

Some Ground Rules for the Group

Although norms will develop over time, these are some standard ground rules that could be presented to the group at the beginning of the meeting by the facilitator;

  1. Groups always begin and end on time, this provides a safe boundary for members so they can plan   transport accordingly;
  2. Confidentiality is imperative;
  3. Freedom to pass, no member should feel pressure to speak;
  4. No monopolising of the conversation, this is a natural hazard of a group process.  The facilitator needs to handle these individuals but this ground rule will make it easier;
  5. Non-judgemental acceptance of others, members must be willing to treat one another with respect, regardless of whether they agree with one another.