Support groups offer help, hope

What do BMT patients and survivors do when they feel frightened, angry, depressed, confused or need to talk with someone who understands what they're going through? Many turn to support groups. According to these patients and survivors, support groups provide vital information that helps them cope with their disease, face the challenges of their treatment and improve their quality of life.

"Medical technology is far ahead of our understanding of how to cope with a BMT psychologically and spiritually," said one BMT survivor who responded to the March 1993 BMT Newsletter survey on support groups. "In my opinion, gaining strength in all three areas is necessary for a cure. A support group should be a standard part of every BMT program."

"I live 300 miles away from my transplant center," said another BMT survivor who was transplanted for acute myelogenous leukemia in 1990. "I find their support group so helpful that I schedule my check-ups to coincide with support group meetings."

Support groups for people with life-threatening diseases have been in existence since the early 1970s. Only recently, however, have the benefits of support groups been studied and widely publicized. A 1981 study of breast cancer patients, for example, found a better quality of life and better pain management reported by patients who had participated in a weekly support group than by those who had not. A ten-year followup study of the same group published in 1989 showed significantly increased survival rates for those who had participated in the support group over those who had not.

Fifty-three percent of the 120 BMT patients and survivors who responded to the BMT Newsletter survey said they attend a support group. Another 10 percent said they had attended a group at some time following their diagnosis and treatment. Of those not participating in support groups, 54 percent cited the lack of a group in their area as the reason for non-attendance. Thirty percent said they did not currently feel the need for a support group, and 11 percent said they were afraid it might be too upsetting.

Despite a growing public awareness of the usefulness of support groups, not all BMT centers offer support groups to their patients or survivors. There are at least four reasons for this, suggests David Cella, Ph.D., who heads the Rush-Presbyterian St. Luke's Medical Center Psychosocial Oncology Program in Chicago.

"First, traditional medical training has focused on the importance of one-on-one treatment of a patient by the doctor or nurse. Few medical professionals have been trained to understand the value of group support for patients. Second, there is a mistaken perception that the value of support groups has not been proven. In fact, more than a dozen studies of cancer support groups have shown a definite correlation between support group attendance and an improved quality of life. Then there is the cost factor. Organizing an effective support group, staffing it with a professional facilitator and advertising its existence costs money. If dollars are short, a support group is likely to be one of the first items cut from a budget. Finally, many BMT programs are small and/or treat patients who live far away from the transplant center. Maintaining a critical mass of participants under these circumstances can be difficult."

Nonetheless, more than 40 BMT programs throughout the U.S. and Canada have organized support groups for patients, their families and/or survivors. Nearly all patients/survivors surveyed by BMT Newsletter who participated in a support group at their BMT center said the experience was very helpful. Seventy-five percent of those who did not attend a support group offered by their BMT center cited the distance from their center as the primary reason. Ninety percent of those whose BMT center did not offer a support group said they would have attended had a group been available.

"The support group has been invaluable in preparing me for the transplant experience," wrote one BMT candidate scheduled for transplant at Memorial Sloan Kettering Cancer Center in New York. "Having talked with other patients who've been through a BMT, it no longer feels like the end of the world but a chance to be cured and live a happy, healthy life."

"The support group taught me how to talk about life's most difficult problems," said a 2 1/2 year BMT survivor transplanted at Hahneman University Hospital in Philadelphia. "The people in the group share the bond of an incredibly traumatic journey, and we're not afraid to help each other."

While more than 40 BMT centers offer support groups, not all address the full range of BMT patient, family and survivor needs. Some offer support programs for in-patients only. Others provide support programs for spouses or parents of in-patients, but not the patients themselves. Less than half offer programs for BMT survivors.

How They Work

Support groups bring together people with a common experience or problem, who best understand each others' questions and fears because they've all "been there." Support groups offer a sympathetic ear, emotional support, an exchange of information, tips on how to cope with emotional, physical and financial problems based on personal experience, and friendship or a sense of community with others who've "been in your shoes." Said one prospective BMT patient, "It's nice to be able to 'talk turkey' with people who know exactly what you're talking about and really 'hear' what you're saying." "It means a whole lot more to me to hear another survivor say 'that's normal' or 'that phase will pass' than some well-meaning member of my family who really doesn't know whether what I'm going through is typical," said another BMT survivor. Most groups have a trained "facilitator"_a nurse, social worker or mental health professional with experience in group dynamics, who's responsible for keeping the discussion moving and focused. Groups may also periodically invite guest speakers to provide information on topics of concern to the group.

What do participants talk about at support group meetings? Whatever's on their minds. Psychological difficulties such as anger, fear of dying, pain, loss, denial, guilt, and depression are discussed. Social worries such as changes in sexuality, dependency, job loss, loneliness, marital problems, and changing lifestyles are also common themes. Group members usually exchange information about coping with the side effects of treatment, pain, relationships with health care providers, and new treatments. These topics can be discussed openly in a support group without members feeling stigmatized for having these questions or feelings, or feeling like they're burdening their family members and friends with their concerns.

For many, support groups help develop a sense of optimism and hope.

"It was great to see people who had already been through a BMT looking so healthy and alive," said a BMT survivor patient transplanted for Hodgkin's disease at St. Joseph's Hospital of Orange County, California in 1992. Hope, however, is often tempered by the reality of a group member's relapse or death. "It's important that people go into support groups with their eyes open," says Patsy Winicour, Co-Director of the Cancer Wellness Center in Skokie, Illinois. "Support groups provide participants with hope, encouragement, information, skills, and a network of friends that can help them cope with their disease, but sometimes you must cope with unhappy realities as well. At the Cancer Wellness Center, our emphasis is on helping each other cope both optimistically and realistically with each situation."

Successful Groups

The success of a support group depends on how well it meets the participants' needs. Some groups are an overnight success, while others struggle along for months or years. While it's often unclear why some groups succeed and others fail, respondents to the BMT Newsletter survey provided some clues.

In general, respondents reported greatest satisfaction with groups that were designed specifically for BMT patients. Support groups for persons with the same diagnosis ranked second.

"I attend a general cancer support group and have met some very wonderful, loving and caring people," reported one BMT survivor transplanted for myelodysplasia in 1990. "Although we share a common bond of having had a severe illness, I wish could share more with people who have had a BMT or a blood disorder _the level of understanding and closeness with people who haven't been through a BMT just isn't the same."

Several respondents noted that a good group facilitator is important. "The person facilitating our support group was inexperienced in working with groups," commented one survivor. "As a result, the meetings sometimes became chaotic." "A facilitator needs to prevent one or two negative people from dominating the meeting or letting the discussion get into a rut," said another survivor.

A good group leader will create a climate that encourages constructive discussions, discourages destructive processes, uses consensus to make decisions, helps group members accept their differences, and protects members' right to privacy. Leaders don't need to be the experts with all the answers. Often, the best ideas and answers evolve from the group discussions.

The size of the group and routine attendance are also important, say BMT survivors. The larger the number of participants in a group, the more likely it is that a person will find others with a similar diagnosis and treatment history, and the greater the pool of experience on which to draw. However big groups can also have their drawbacks, cautions David Cella, Ph.D. "It can be difficult in groups of more than 10-12 people to address everyone's individual concerns in a 1-2 hour timespan, and some may come away feeling that their needs were not met." Some support groups have found that a commitment to attend a specified number of meetings, and closing the group to new participants after the first or second meeting, improves the cohesiveness and quality of the group.

Where the group meets can impact attendance. Many former BMT patients are uncomfortable returning to their treatment center, and find meetings held elsewhere more appealing.

Finding A Group

Finding a support group in your area that meets your needs may be difficult, but not impossible. Here are a few places to start: First, ask if your BMT center conducts a support group for patients and/or family members. If they did not have a support program when you were transplanted, they may have started once since that time that you can attend. If they do not have in-house support programs, the doctor, nurse or social worker may be able to refer you to one in the community.

If you don't live near your BMT center, check with hospitals in your area that perform bone marrow transplants to see if they sponsor BMT support groups. Even if you were not transplanted at that center, some programs will still allow you to participate in their support groups. Alternatively, they may be able to refer you to a support group that is not affiliated with the hospital. If you don't know which hospitals perform BMTs in your area, ask your local doctor or the center where you were transplanted for guidance.

If no BMT support group is available in your area, try locating a support group for people with your specific or a similar disease. Although not everyone in the group will be BMT patients or survivors, you'll likely find at least one person who's been through a BMT and understands your concerns. The box at left lists some national organizations that can help direct you to disease-specific support groups in your area. A local cancer treatment center may also be able to provide suggestions.

Some people find that a general cancer support group suits their needs. Try calling the Cancer Information Service, the American Cancer Society, your local hospital or your physician for the help in locating cancer support groups in your area. The Candlelighters Childhood Cancer Foundation sponsors support programs throughout the US for families of children with cancer. See the box on page 3 for how to contact these groups.

People who don't live near a major cancer center or have an unusual disease may have difficulty finding a suitable support group. Groups that provide support to spouses and children of BMT patients and survivors may also be hard to find.

"We have not been involved in support groups because my son had a very rare disease," wrote the mother of a child who was transplanted for Evans Syndrome in 1992. "Because it was not cancer, we were not invited to join Candlelighters or other cancer support groups. We just didn't fit in. Our BMT center had a support group for in-patients, but once you were out you were on your own."

Some patients have tackled this dilemma by starting a group of their own. Others have found phone-links or pen-pal systems a good way to network with other people with similar problems who do not live in their area.

Phone-Links

Many BMT centers routinely put prospective patients in phone contact with survivors who have been transplanted for the same disease or have undergone a similar type of transplant. Some people prefer talking one-on-one with another patient or survivor rather than attending a support group.

If your BMT center is unable to match you up with a person who has had undergone a BMT for your disease or has experienced similar problems, try contacting one of the Phone-Links listed in the box on page 1 for help.

Are Support Groups Right For You?

Not everyone feels the need for a support group. Some people find that family and friends provide all the support they need. Others steer clear of support groups to avoid things that might upset or depress them. Whether or not a support group is right for you is a personal decision.

Since support groups differ and can change over time, relying on someone else's experience or impression of a group can be misleading. It's best to attend a group meeting and form your own opinion on whether the group is helpful.

Many people find that their interest in or need for a support group changes with time. Discussions that may have been upsetting when a person was first diagnosed may be less disturbing and even helpful after someone has gone through a BMT.

Support groups are not just forums for getting help and support_they're a vehicle for giving advice and support as well. Some BMT survivors remain in groups long after their own need for support has diminished, in a effort to help other people facing the same difficulties they once tackled. Said one BMT survivor, "Helping new BMT patients through the many challenges they face before and after transplant has been one of the most rewarding experiences of my life."

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