"Caregiver Support Groups: Is One Right for You?"
By Lisa M. Petsche
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As a caregiver, you may have read articles about preventing burnout that include the suggestion to join a support group. Perhaps you’re reluctant, though, wondering whatcaregiver groupsare all aboutand whether one would be of benefit to you. If so, read on.
The overall goal of caregiver groups is to enhance caregivers’ coping skills, through mutual support and information-sharing.
Objectives may include: validating the important role of family caregivers; exploring the challenges and rewards involved in caregiving; acknowledging the emotional impact of a family member’s illness and exploring coping strategies; engaging in group problem solving regarding practical issues; providing education about disease processes, behavioral issues and management strategies; identifying and addressing barriers that seniors and their caregivers encounter in the community; promoting effective use of community resources; and recognizing caregivers’ needs and supporting them in balancing these needs with those of their relative.
Benefits and limitations
Benefits of group involvement include: realizing you are not alone in your situation and feeling understood;having an opportunity to express thoughts and feelings in an empathic, non-judgmental environment; learning from the experiences of other caregivers; gaining satisfaction from helping others on the caregiving journey; making new friends; keeping current on caregiving issues and resources; and recognizing the importance of self-care.
Some people worry that hearing about other people’s difficulties will only make them feel worse; however, after attending a couple of group sessions, most find them beneficial.
A group setting is not suited to everyone, though, including people who are very shy or private in nature; those who are self-focused, either as a longstanding personality trait or due to extreme stress; and those who have significant, often longstanding personal issues (for example, a psychiatric illness or a conflicted relationship with the care recipient). In such cases, individual counseling is usually recommended.
Practical reasons why attending a group may not be feasible include severe hearing impairment, and being unable to obtain respite care or transportation. Caregivers in these situations may wish to explore alternatives to traditional support groups, such as telephone support networks, or online message boards, chat rooms, e-mail mailing lists or discussion forums that address caregiving issues. These have the convenience of being accessible from home 24 hours a day, seven days a week. Internet communities also offer anonymity for those who wish to keep their identity private.
Types of groups
Caregiver groups may be general—that is, open to all caregivers--or specific to certain populations (for example, caregivers of older adults) or illnesses (such as Alzheimer’s disease).
Some groups are structured, with set agendas, and time-limited (typically 4-6 weekly or biweekly sessions). Led by health care professionals, such as a social worker or nurse, they are primarily educational in nature, and often include guest speakers. Pre-registration is usually requested.
Informal groups focus primarily on emotional support; member sharing of thoughts, feelings and experiences is key. Facilitators may be experienced caregivers or professionals who work with caregivers. Meetings are usually held monthly, and new members are welcomed on an ongoing basis.
Some groups may be a combination of the above two types, alternating between educational and support sessions, or scheduling time for both during each meeting.
Factors to consider when choosing a group
- Convenience: Time of day offered; frequency and location of meetings; availability of concurrent care for your relative.
- Commitment required: Time-limited groups require regular attendance, whereas informal groups usually operate on a come-when-you-can basis. (Keep in mind that the more regularly you attend, the greater your comfort level will be and the more you’re likely to get out of the experience.)
- Purpose: Do the group’s stated goals and objectives coincide with what you’re looking for in terms of support and/or information?
- Facilitator’s background and experience with caregiving issues and leading groups.
Tips for first-timers
- Make contact with the facilitator in advance, or prior to the start of the meeting, to introduce yourself and share a bit about your situation (e.g. the nature of your relative’s illness, your relationship to him/her, how long you’ve been caregiving).
- Bring a friend along with you.
- If there’s a social time at the end of the meeting, stick around and mingle with other caregivers to get to know them better.
- Attend more than one meeting before deciding if a particular group is right for you—some people require a few sessions to feel comfortable.
Evaluating the support group experience
- Is the physical setting comfortable and distraction-free?
- Are group norms—such as taking turns, respecting differing viewpoints and maintaining confidentiality with the group—clearly articulated and adhered to?
- Can you relate to other members’ experiences, perceiving a common bond with them? Is the environment one of understanding and acceptance, such that you feel comfortable sharing with the group?
- Does the facilitator appear knowledgeable about caregiving issues and relevant community resources? Is he/she a good leader–confident, articulate, sensitive, empathic, flexible, and skilled in maintaining focus, generating discussion, preventing individuals from dominating, gently drawing out less vocal members, and recognizing when someone needs more help than the group can provide?
Highly rated groups also emphasize caregiver strengths, incorporate humor, and include a social time where caregivers can build relationships that eventually may extend beyond the group.
If your experience turns out to be unsatisfactory, consider trying a different group before concluding that support groups aren’t for you.
Where to find information on caregiver groups
- Hospital or community social worker
- Non-profit organization associated with your relative’s disease
- Local area agency on aging office
- Community calendar of your local newspaper
- Seniors’ center bulletin board
- Community information service
- Local public health department or mental health association.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.