Group Work with Caregivers
By Holly Mathers, BA, MTS
Caregivers for people who are chronically ill or who require palliative care face a variety of challenges and have unique needs. Unfortunately, due to their caregiving demands caregivers often do not access support. This can compromise their physical, emotional and psychological wellbeing. As well, barriers to accessing support for caregivers can be viewed as insurmountable by professionals. The trend of improved medical interventions means that people are living longer with chronic illnesses that previously would have been terminal or more limiting. Because of this shift, the number of people who are providing care to family members is increasing.
Caregiver Isolation
Caregivers are often isolated. In most cases they gradually take on more caregiving tasks as the health of the person being cared for declines. Because it happens so gradually, they adjust to the increased demands and take longer than is ideal to access support and community resources. By the time caregivers receive support they can be overwhelmed and potentially close to burnout. When caregiver support groups are available intervention can happen earlier and lead to better outcomes for caregivers and, by extension, the person they are caring for.
How to Run Support Groups
Caregiver support groups can provide a place to receive care instead of giving care. This is a factor that is often minimized but is significant for people who are constantly focused on the needs of another person.
Having a comfortable, relaxed meeting place for caregiver groups is essential. It helps create an atmosphere where sharing can take place. Lighting a candle can be a positive addition to the room. Leaving tissues in an accessible place is also important, available if people need them but not pushed on anyone who shows emotion.
A team that includes the main group facilitator and a cofacilitator works well to address the group needs. The cofacilitator’s main role is to greet group members warmly as they arrive and bring them a beverage (usually coffee or tea). This act of service is meaningful to caregivers and allows them to relax and be looked after during the group. After the first group session the effort of the cofacilitator to remember each person’s drink preference is appreciated. The cofacilitator can keep a list to refer to if they are concerned about forgetting this information. The cofacilitator also looks after providing different treats for the group’s refreshment each week.
Another role of the cofacilitator is to be a second set of eyes and ears in the group. He or she can pay attention to issues that come up and the reactions of group members. During a short debrief time after each meeting the facilitator and cofacilitator discuss that day’s events, any concerns or questions about the discussion or group members, and plans for upcoming groups.
The group size is an important factor. A group of six to eight people is best in order for there to be enough time for each person to participate fully. The group meets for one and a half hours weekly for ten weeks. After that many groups continue to meet for a monthly social hour to stay in contact and continue to support each other.
Once the tone is addressed with the setting, care, food, and group leadership, the approach and structure of the group are considered. Group facilitators are creating a place to reduce caregiver isolation, provide support, explore relevant topics, discover resources, and share coping strategies and learn new ones. For this to happen, the facilitator needs to use an approach of guided discussion.
It is important for members to feel the group is useful to them. This factor needs to stay at the forefront of the facilitator’s mind. This may mean letting go of the scheduled discussion topic to pursue a conversation that is naturally taking precedence. Other times it may mean bringing a group member back to relevant topics. It is a gentle guiding approach that fits for caregivers. The order the topics are covered works best when it is adjusted based on what matters most to each particular group.
Groups begin with a check-in time where members can share any updates from their week, issues of concern, or thoughts and feelings they are experiencing. At the first session this time is used for introductions and to discuss the group guidelines. Caregivers are always given an opportunity to share during this time and they are free to pass when they do not want to share. This section is not limited to a certain amount of time. It often leads to relevant group discussions.
The topic for that week is explored after the check-in time concludes. Topics include:
- Living with the unknown
- Self-care
- Stress
- Mourning losses
- Saying no
- Religious communities
- Other topics as they are raised.
A handout can be provided that includes information to think about regarding the topic, discussion questions, and further resources. The focus is on exploring the topic together rather than telling members how to approach the issue.
What often happens in groups is caregivers and group facilitators share about community resources and options that others might not know about. They also have a place to voice their true feelings and concerns which allows them to begin addressing what is most relevant to them. Group members can begin to make plans in their own lives they may have been putting aside. Some may realize more care and community support are needed and take steps to access this and improve their support systems. The group members develop friendships with each other and become less isolated as a result.
Caregiver guilt is a major issue. Many caregivers feel guilty for enjoying aspects of life the person being cared for is no longer able to participate in. Hearing from other caregivers who have been able to give themselves permission to live their own lives while still being a caregiver is incredibly powerful for someone who has been feeling overwhelmed and constrained as a caregiver. These conversations lead to caregivers who are looking after their own needs as well as the needs of the person they care for.
Often people who are being cared for have deteriorating health and at some point they die or go into a long-term care facility. This is where the importance of caregivers also living their own lives becomes central. Being a caregiver can be a temporary role. The life of the caregiver hopefully will extend past that time. The guilt experienced by caregivers highlights the grief involved in caring for someone whose condition continues to worsen.
- Barriers to Accessing Support
It also accounts for one of the barriers to caregivers accessing support which is leaving the person they care for at home while they come to the group. This can be a challenge but there are services available to have someone come in to provide care while the caregiver is away. Family members and friends can often help for these brief periods of time and some people are able to stay on their own while their caregiver is at the group. It is an initial barrier but once caregivers take the step of coming to the group, they are glad they did and see the time away as worthwhile.
Each group session ends with a meditation or relaxation exercise. When people are living with ongoing stress, tension and uncertainty, these are tools that can provide physical relaxation, a mental break and feelings of refreshment and renewed energy. This is a time group members look forward to and enjoy. There are many written and recorded relaxation exercises available. Trying different styles in the group gives people a chance to discover if this is a useful strategy for them and which exercises they prefer. This is an aspect of the group the cofacilitator can look after.
The last group session has a different format and includes time for check-in, completing feedback forms, setting dates for the monthly social hour, and sharing contact information (if desired). Group members also write and address a letter that is mailed to them two months after the group ends. The letter contains words of encouragement, advice and anything else they want to remind themselves about. Cards are also passed around, one for each caregiver, and participants write a short message to each. The card is then taken with the caregivers at the end of the meeting. The session concludes with a potluck meal.
Funding
The way groups are funded and offered is another important area of discussion. Caregiver groups so far have been offered through churches. Churches contract with facilitators to offer the group and they pay the facilitator for providing this service. The group is offered to church members and people in the surrounding community at no charge to participants. The cofacilitators are often university level students who work on a volunteer basis to gain experience. Groups can also be offered through other organizations that offer support services for people dealing with specific illnesses. They can be offered to participants on a fee for service basis although that might create a financial barrier for some people.
What the Groups Mean to Participants
Comments from participants include the following:
“The group was accepting and nonjudgmental. It reminded me that I am not alone, and of the need to take the opportunity to open up to others.”
“A wonderful comfort level was achieved among the group; a very gentle atmosphere.”
“I enjoyed all of the topics and how it was led.”
“Being able to share openly was helpful to me and I really appreciated the support and input I received from the others in the group.”
Conclusion
In conclusion, support groups can empower, connect, and support caregivers in valuable ways when facilitated well.
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