How to Care: Support Groups/Self Care: Print It Summary

Things You Should Know

Support group participation

The more actively support group members participate in the group:

The higher their levels of satisfaction

The greater their coping skills

The more positive their attitude toward the problem or issue

Barriers to participation in support groups

reluctance to disclose personal problems to strangers

perception of joining a group as a sign of weakness

fear of becoming overwhelmed by other people's problems

lack of information on availability of groups

lack of support from family and friends

lack of information on how to start a group

geographic distance

age — older adults are less likely to seek outside help

ethno-cultural background

mobility restrictions

Traditional support groups and self-help groups
These are usually informal groups of individuals with similar concerns who meet, on a regular basis, to exchange information and provide peer support. The group leader may be a peer or a professional facilitator. The group may be self-organized or part of a larger organization.

Telephone networks
Telephone networks can be particularly effective for people who need one-on-one support but are unable to attend regular support group meetings.

Self-help networks
Self-help networks consist of support groups that have banded together to form a larger organization. This usually provides a strong base for fundraising initiatives and advocacy and lobbying activities. Self-help networks usually have a single focus or cover a specific geographic location.

Self-advocacy groups
Self-advocacy groups focus on educating the public about the group's priority issues and lobbying decision-makers to bring about legislative, policy and program changes and initiatives.

Online support and self-help groups
- E-mail mailing lists
  Subscribers to a specific e-mail account share ideas, feelings and information.

Successful support groups

provide a safe, secure, welcoming environment

respect the confidentiality of members' discussions

encourage members to be respectful towards each other

emphasize emotional support and practical coping skills and strategies

encourage active participation and active listening on the part of all members

encourage members to give and receive help

are open to all members of the public who share a common experience

hold meetings on a regular basis, preferably free of charge

have an organizational framework

are run by and for group members

use peer members as facilitators and educators

invite professionals to participate as guest speakers and to play a consultative role

have strong community links

share their collective knowledge about a wide range of resources

How to Care: Locating a Support Group

Questions to ask

Is this the right group for you? Does it address your concerns?

Do you need to meet face to face with others?

Will telephone or online support suffice?

Are you comfortable sharing your intimate feelings with others?

Are you willing to listen to other people's difficulties?

Are you deriving benefit from the group?

Does the group leader maintain control or do meetings lose focus, leaving you frustrated?

Note: Too many caregivers claim they don't have the time to attend support groups. Please make the time; it's critical for your survival.

Steps to take

Determine what you need from a support group.

Find out if there is an existing group that meets your needs.

Discover sources of information about support groups

self-help clearinghouses and resource centres

social service agencies

volunteer bureaus

community agencies

health, disease and disability associations

seniors' centres

churches and other religious institutions

hospitals, clinics and healthcare facilities

professional therapists

newspaper listings

community services directories

community services listings

the Internet

Visit support groups with similar concerns

Join the group that best meets your needs

Start your own support group, if necessary.

Starting a Support Group

Questions to ask

Is there an existing support group that addresses your concerns?

Do you have the time and energy to start a support group?

Do you have the support of family members and friends?

Can you handle the extra demands of organizing a support group?

Are there other organizations that the new support group can align with?

Are there other caregivers willing to share responsibilities?

Are there professionals you can call on to help with start-up?

Are there professionals you can call on to provide topical advice and information?

How will you publicize the formation of the group?

What community resources are available?

What are possible sources of financial support?

Where will the group meet? When? How often?

How will the group be led — by peer leadership, professional facilitation, shared leadership?

How will group responsibilities be shared?

How will the group be structured — as a stand-alone group or as part of a larger organization?

Will it be an informal group or legally registered?

Steps to take

Visit support groups with similar concerns

Talk with experienced group leaders

Find out what they have found to be most effective

Obtain how-to packages from established groups

Contact a self-help clearinghouse for information on how to start a support group

Find out about available community resources

Seek out opportunities to create strategic partnerships

Find out about potential funding sources

Service clubs

Community and social service agencies

Businesses

Grant-awarding agencies and foundations

Professional associations

Gifts in kind

Donations from individuals, families, bequests

Form an organizing committee

Arrange a planning meeting

Establish the group's focus

Define the aims and objectives of the group

Decide who can join the group

Define the group's relationship with professionals

Establish the purpose of the first meeting

Arrange a meeting to launch the group

Publicize the launch meeting. Target potential members

Collect resource information and materials to display or exchange at the launch

Running a Support Group

Questions to ask

Is the meeting content relevant to the members' needs?

Is the meeting location convenient and accessible to the majority of members?

Is the meeting schedule adequate for members?

Are members satisfied with the conduct of the group?

Are members satisfied with their level of participation in the group?

Have the members' needs changed?

How will the group publicize its availability to potential new members?

Steps to take

Select a group leader or rotating schedule of leaders and/or facilitators

Establish clear ground rules:

Confidentiality — Keep discussions between group members only.

Respect — Let each person speak without interruption.

Guest speakers — Keep introductions short; let guest speakers present their topics.

Patience — Be patient towards group members, especially those in need.

Constructive discussion — Confine group discussions to issues and coping strategies specific to the group. Deal with external matters privately.

Group ownership — It's your group. Speak out, be respectful, stay on track.

Finish meetings on time but let attendees arrive as they can.

Select a meeting place, schedule and meeting format

Hold regular meetings

Solicit feedback from members on the effectiveness of the group

Make group decisions about changes, as necessary.

Sample discussion topics for caregiver support groups

Responsibilities and rewards of caregiving

How to handle day-to-day problems

Information on community and support services

Self-advocacy

Advocating for the care recipient

Effects of change and loss on marital and family relationships

Learning about health boundaries

Warning signs of caregiver stress

Ways to relieve caregiver stress

Taking care of yourself

What to say and do when you can no longer be a full-time or part-time caregiver

Long distance caregiving

Coping with your feelings

Dealing with grief and moving on

Facing the day when placement in long term care is a necessity