Support and Advocacy Groups

Mufty describes how to locate support.

Support groups can be one of the most valuable tools in the Caregiver’s Survival Kit. Support groups provide caregivers and/or their loved ones with a place to meet and share information, experiences and feelings with people who are either in similar circumstances or who have “been there.” Research has shown that support groups can improve coping skills and reduce stress for caregivers and for those with chronic disabilities.

A support group usually consists of a small number of individuals with a common interest who meet at a specific location on a regular basis. Although, traditionally, these meetings have been face-to-face, the Internet and social media now permit virtual meetings through chat rooms, online member forums and video conferencing or similar technology. These virtual support groups are a boon to people who live in rural areas or who are housebound due to disability or weather conditions.

Caregiver support groups

• Provide information and advice
• Provide social and emotional support
• Reduce feelings of isolation
• Allow caregivers to vent feelings and frustrations safely
• Renew strength to cope with stressful experiences
• Provide hope
• Reduce depression and anxiety

Self-help groups for individuals with a chronic disability

• Provide information and advice about the condition
• Explore the psychological and social impacts of the condition
• Allow individuals to exchange information about resources and support services
• Help individuals learn new self-care skills
• Create a social network for mutual aid and support
• May also unite for advocacy around critical issues

Some individuals resist attending a support group and/or find it difficult to participate because:

• They are not comfortable disclosing their difficulties or feelings to strangers or are afraid of becoming overwhelmed with other people’s problems.
• There may be age-related or cultural barriers to talking about disability, and needing support may be seen as a sign of weakness.
• Other barriers include lack of local support groups or being unaware of existing groups, transportation problems and limited respite support.

Telephone and online networks can be particularly effective for people who need support but are unable to attend regular group meetings for various reasons.

The Environment

Support groups should provide a safe, respectful and welcoming environment, emphasize emotional support and practical coping strategies, and encourage members to both give and receive help freely. They should hold regularly scheduled meetings and have an organizational framework. A support group may be facilitated by the members, or there may be a specially trained facilitator. Some groups invite professionals to give advice or be guest speakers as needed.