Suggested Meeting Activities:
- Hold sessions for caregivers to discuss their concerns, issues, frustrations and share ideas for rest, relaxation and coping with stress.
- Organize a respite day for caregivers.
- Arrange for volunteers or fellow caregivers who are willing to share caregiving responsibilities in order to relieve others.
- Discuss available resources — government programs, transportation, respite programs, community hospices, life insurance, travel insurance.
- Discuss the fear of dying and coping with what lies ahead both for the patient and his/her family.
- Discuss research updates (invite a hematologist, researcher or drug company representative). (Note: Caution the speaker not to recommend a certain therapy or drug to individual/s.)
- Hold a video/book review evening. Ask participants to review a book or video and present to the group.
Support Groups Evaluation
Ongoing evaluation of a Support Group is imperative to keep it fresh and up-to-date.
When you pick a speaker and topic for a meeting discuss the objective with the speaker then set some goals for what information is to be imparted. From those goals, develop a quick evaluation form to be completed at the end of the meeting.
This feedback will help to set the agenda for the next meeting, which covers this topic.
Remember . . .
The Support Group is there to support those living with MDS and their families.
Don’t be afraid to survey them to find out what they would like to discuss or learn during a meeting.
It is worth noting that not all of the following topics will be appropriate for all participants. For instance, talking about death and dying may upset newly diagnosed individuals.