For maximum effectiveness, carefully design structure for support group
Provide consistent evaluation to determine if outcomes are achieved
Numerous studies have proved support groups to be an effective tool for helping people learn to cope with serious illness and chronic disease. Yet groups must be structured appropriately to achieve maximum effectiveness.
"There is consistent agreement that just bringing people together for the sake of emotional support is not nearly as beneficial as bringing people together and teaching various skills they can use in relationship to their illness," says James Zabora, ScD, associate director for community research at Johns Hopkins Oncology Center in Baltimore. When a skill-building format is combined with the emotional support that develops by virtue of bringing people together, you maximize the group’s effectiveness, he explains.
It is important for patient education managers to spend time up front determining structure, format, goals, and outcome measurements before starting a support group, says Zabora.
The first step to creating an effective support group is to determine whether or not there is a need, says Patrice Rancour, MS, RN, psychiatric mental health clinical nurse specialist at the Arthur James Cancer Hospital and Research Institute in Columbus, OH. Rancour tracks requests for support groups to determine if there is enough interest.
Yet patient interest is not the only indicator for a support group. It is important to see if there already are similar support groups within the community. "Find out what everyone else is doing and identify where the service gaps are in the community," advises Rancour.
Surveys also can be used to determine a need. While studying the feasibility of developing a bereavement support group, Rancour conducted a telephone survey of families connected with the cancer center’s hospice. The surveyors found that people interested in such a group had made connections through their church and other community organizations. This discovery prevented the hospital from duplicating existing services.
To determine if there was a need for a cancer support group at the Riverside campus of Grant/ Riverside Methodist Hospitals in Columbus, staff conducted a written survey of cancer patients in the radiation department and on the oncology unit.
Although most participants wrote that a support group was a good idea, they put question marks when asked what day and time would work best. This indicated that people would not be able to fit a support group into their schedules, says Andrea Bedway, PhD, RN, CS, psychiatric mental health clinical nurse specialist at Grant/ Riverside. As a result, the hospital did not add to its existing offerings
Structure group for success
Although people may be attending a support group, that doesn’t necessarily prove it is effective. There are many factors that make a group successful; the facilitator is crucial. The person who leads the group needs to be knowledgeable about the disease and have experience as a group facilitator, says Susan Bunevich, RN, oncology educator/ breast health specialist at Grant/Riverside and facilitator of three support groups.
Many cancer support groups at Riverside are currently being facilitated by a master’s-prepared social worker and an oncology-certified nurse. "What that combination allows is the social worker to deal with the psychological issues and social consequences of groups, and the nurse to deal with questions related to cancer treatment symptoms," says Zabora.
Co-facilitators also can be more responsive to the group, says Rancour. "I find that in a support group, there is a lot happening in the room, and one person can be responsive to the content of the group discussion while the other facilitator is scanning the room for process," she explains. With two facilitators, it is easier to keep track of how people in the group are reacting to what is being said. If a participant gets upset and leaves the room, one facilitator can go with him or her.
The facilitator isn’t the only vital member of the group; each participant is important too. Therefore, patients should be screened to determine if they are appropriate candidates for a support group. People with high levels of stress and anxiety or severe depression and other psychological issues should be referred to a counselor.
At the Johns Hopkins Oncology Center, patients are asked to complete a psychological profile before they are enrolled in a support group. The standardized questionnaire has 18 brief items. It takes a minute to complete the questionnaire and about a minute of staff time to score it, says Zabora.
For example, patients are asked to rate feelings of loneliness, worthlessness, and hopelessness about the future. Questions also cover the extent to which patients feel nervous or shaky inside, or how tense or keyed-up they are.
Size also can affect the group’s effectiveness. While many people insist that groups larger than 15 people can’t be successful, Bunevich has not found that to be true. She has facilitated a cancer support group for 10 years that usually has 25 to 30 participants. To manage the group, she makes the objectives of the group clear in the beginning and establishes rules. For example, she lets people know they are to share what has worked for them but not to try to force their beliefs on others.
Provide tools for growth
To help people learn how to cope with their disease, education and skill building must accompany the emotional support provided by a group. People need to be given skills to deal with the issues they face, says Zabora. For example, many people lack problem-solving skills. They don’t know how to evaluate options for solving the problem, implement a plan to address the issue, or evaluate the solution’s success. In addition to problem solving, people might be taught skills to reduce anxiety or pain.
Bedway addresses the educational needs of her breast cancer support group by holding two meetings a month. The first meeting features a speaker, and the second meeting is for general discussion and emotional support. She selects topics by interviewing group participants and arranges the lectures for the whole year. That way, Bedway can give the group a calendar of featured speakers and each member can come when a topic of interest is covered, she says.
Make sure information is helpful
In one closed support group (meaning no new participants are added after initial enrollment and the group disbands after a certain number of weeks), Rancour taught stress management techniques, such as guided imagery, at the beginning of the group before the discussion. Yet you must be sensitive to the needs of the group, warns Rancour. The participants in the next group did not find the exercises helpful, so she stopped teaching them.
After the group’s structure is carefully designed, the best way to determine if it is working is to evaluate the group. The evaluation should be designed to determine if you are achieving your outcomes, says Zabora. For example, if you want to measure whether the group is reducing anxiety, design a tool to measure participants’ anxiety levels. Administer the tool before they enter the group, and again after they have been coming to group for a few weeks.
It’s best to take a couple of pre-group measurements to ensure the anxiety level is accurate and the person wasn’t just having a bad day when the test was administered, says Zabora. In an ongoing group, measurements can be taken periodically to see if interventions are working. For example, if one of the group’s goals is to improve quality of life, the measurement might be taken every three months to allow adequate time for the intervention to work.
Another technique used to evaluate group interventions at Johns Hopkins is the immediate delayed treatment design. With this method, 10 patients are selected at random to enroll in a support group, and 10 patients are selected as a control group. The patients are compared to see if such interventions as problem solving are effective. Those patients in the control group are eventually enrolled in a support group after the interventions prove to be effective. "The immediate delay design allows you to look at the effect of a particular intervention," explains Zabora.
Sources
For more information on how to maximize the effec tiveness of a support group, contact:
• Andrea Bedway, PhD, RN, CS, Psychiatric Mental Health Clinical Nurse Specialist, Grant/Riverside Methodist Hospitals, 3535 Olentangy River Road, Columbus, OH 43214. Telephone: (614) 566-5721. E-mail: [email protected].
• Susan Bunevich, RN, Oncology Educator/Breast Health Specialist, Grant/Riverside Methodist Hospitals, 111 South Grant Ave., Columbus, OH 43215. Telephone: (614) 566-9654. Fax: (614) 566-8233. E-mail: [email protected].
• Patrice Rancour, MS, RN, Psychiatric Mental Health Clinical Nurse Specialist, Arthur James Cancer Hospital and Research Institute, 300 West 10th Ave., Room 004, Columbus, OH 43210. Telephone: (614) 293-3237. Fax: (614) 293-6037. E-mail: [email protected].
• James Zabora, ScD, Associate Director for Community Research, Johns Hopkins Oncology Center, 600 N. Wolfe St., Baltimore, MD 21287. Telephone: (410) 955-5670. Fax: (410) 614-1210. E-mail: [email protected].
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