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Forming a Support Group
If you are thinking of forming a support group, one of the first questions you will ask yourself is the type of group that you wish to form. Not surprisingly, you will want to form the group that works best with your particular personality. There are several different types of groups and you need to know what is most likely to fit you and the needs of the people with whom you will be working. The broad categories of groups include: Support Groups –These groups generally center on sharing common experience and often vent long pent up frustrations. Participants are not there to be judged for their feelings, experiences, or how they have handled them. Effective support groups depend on consistent participation since support for and between members is crucial. This fosters the ability for members to understand each other and their views. Support groups do often have other activities but these should be agreed on by the majority of the membership. It is not unheard of for support group members to have holiday parties or picnics or other outings.
Benefits of a support group: Participants learn that they are not alone; their experience with the disease is shared by others; That their feelings and emotions are normal reactions to their situations; They can express themselves and their fears without being labeled or given unwanted advice and most importantly they can simply express themselves.
Disadvantage: Most Fibromyalgia patients have classic, type-A personalities and want to make things better; this is a tendency that has to be curbed in a traditional support group, or there will be a lot of unsolicited advice being given.
Self Help Groups- In self-help groups, all members interact equally and are asked to join with the idea that they will become knowledgeable about Fibromyalgia, and the key parts of CFIDS (IBS, interstitial cystitis, insomnia, chronic fatigue, and migraines). The group will not have a leader but several facilitators who will coordinate planning of the meetings and help integrate new members into the group. The idea of this group is to have the membership move from passive patient into more active participant in their health care team. In this type of group, patients may be encouraged to research one aspect of the disease and talk about it in meetings. Sometimes patients work in pairs or in small groups to do this.
Benefits of self-help group: Participants learn positive coping strategies; Members keep in touch with recent research; Treatment developments are discussed; Legal issues may be discussed as they pertain to FMS/CFIDS; Pacing techniques and how other patients with Fibromyalgia or CFIDS s around the country are surviving with our disorder may be topics; Patients often improve their communication skills when they are able to research and talk about and aspect of FMS.
Disadvantage: This type of group puts a strong demand on the facilitator and demands that at least two other people develop the skills to make this a team effort.
Patient Advocacy Groups These groups deal least with individuals needs’ and concentrate on educating members as to the history of the Fibromyalgia/CFIDS advocacy movement. Instead, they focus their time advancing the issue (s) most important to People with Fibromyalgia/CFIDS (PWFs or PWCs) and how these issues can be dealt with local, state and national level. Most patient advocacy groups are involved in research. Some concentrate on social service related issues, others concentrate on national advocacy issues. The advantages and disadvantages of these groups are harder to identify. Over the years, some of these groups have spent so much time on internal arguments as to completely remove themselves from the patient community.
Combination Groups It is possible to have a Support/Advocacy group or a Self-help/Advocacy group and combine aspects of both types of groups. This gives group leaders and member some flexibility in their style of meeting and allows them to alternate support and advocacy meetings or to have just two or three advocacy meetings a year. In this way the needs of the individual are not lost and there is little chance that the advocacy issues will be come so theoretical as to have lost their meaning to patients.
Practical advice: Several Support group leaders have recommended the following: To start a group: Advertise widely, put flyers in doctors’ offices or write doctors and let them know the group is starting. Place advertisements in community papers or in the community calendars, advertise in church bulletins, signs at local health centers, hospitals, health fairs and anywhere people are likely to go for health care or health products. Many local cable companies have free community service announcements Most all radios have free listing of local support info/community service announcements. Find out and make use of these. Write a letter to the editor of the local paper stating your intention to start a group and where it might meet.
Finding a Meeting Room: 1. Local libraries often have rooms that they will let community groups use for meetings. Check to see if this is the case in your area. 2. Churches often will allow community groups to use one of their rooms for meetings. 3. Local hospitals often have space for education classes and many have community rooms and are required to allow many non-profit organizations to use them--even without the formal papers identifying you as a not for profit. 4. Community colleges often let the community use their facilities—ask to see if they will make a room available for a support group. 5. If the Chamber of Commerce has their own offices in your area, they may also allow the community to the rooms for meetings.
Speakers: If your group is not strictly self-help or a support group, you may want to bring in speakers such as social workers, chiropractors, doctors, nurses, physiotherapists, massage therapists or anyone who has worked with people with chronic illnesses on occasion. Speakers should be announced in advanced and advertised so that group members will know when they will be present. Try not to have the speaker use the entire meeting time.
Guidelines: Some group leaders/facilitators use the term system; others prefer guidelines. In any case some policies generally have to be set regarding behavior.
Finances: Few support/self help groups have dues since most members have financial problems. Some groups pass the hat to offset the cost of copying shared literature. Others have 1 or two members who donate as much as they can to cover the document reproduction—this is not recommended. Passing the hat to share expenses is an acceptable way to reduce the burden of copying expenses. However, an accounting of how much money is raised and spent should be kept in case group members would like to know. It is not recommended that meetings begin with a prayer or any other religious activity. Not all members will be people of the same faith or beliefs and it is best to stay away from religious topics. However, you can use inspirational material, are meditation books if members are inclined to discuss nondenominational spiritual material. The difficulty in this will be not making the assumption that all members are Christian.
Meeting Schedule: You will need to pick a day such as the third Tuesday of every month or the second Saturday and keep to that day for meetings. Meeting dates and times should be consistent. Groups can be strengthened if members keep in touch in between meetings. This should not mean that the group leader calls all members but rather a telephone tree should be set up. This makes it easier for members to call each other if they have a need to talk or have an emergency.
Compiled and written by: Anne-Marie Vidal,
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Copyright©2005 Our FM/CFIDS World, Organization. All rights reserved. The ongoing business of Chronic Fatigue Research France, Inc. is possible by the public in monetary donations and website sponsorship. Our bills are very few, therefore most of our donations will be sent to aide in the awareness, and research for Fibromyalgia and CFIDS cause, treatment and cure. |
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