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"Stepping Stones" an instant
success
From its very first meeting in October 1990, "Stepping Stones,"
the support group for BMT survivors at the Dana-Farber Cancer Institute in
Boston, Mass., was a success. Initiated by two young women BMT survivors who
wanted help "getting on with their lives," the group is facilitated by
transplant nurse Mary McCauley and social worker Phyllis Truesdell. It meets
monthly for about 1-1/2 hours in the evening.
"It is the most inspiring and uplifting part of my job,"
says Truesdell. Knowing that others share their experience "makes people more
honest and open."
Emotions expressed at meetings include fear, sadness, anger, hope,
happiness and humor. Humor always compensates for the heaviness and tears,
Truesdell says. According to Truesdell, "People talk about how the experience
has changed their relationships and what they think is important. There seems
to be an emphasis on being more caring and loving."
Twenty-one people attended the first meeting. "We sent a letter to
all people who had gone through a transplant at our institution," recalls
Truesdell. Letters were also sent to major hospitals in the area to recruit
people who had been transplanted elsewhere.
"We wanted to serve the population, and it didn't make any
difference to us where people were transplanted. We figured everyone had
similar issues," Truesdell says.
People find out about the group mostly through word of mouth.
Patients are usually told of it when they come back for a six-month checkup.
"We are working now on a better way to systematically offer this to people,"
Truesdell says. "Sometimes it gets skewed. Those who are doing better may be
less likely to be told the group exists."
Initially, the Institute planned the group for adult BMT patients
who had been out of the hospital for at least six months and were in remission.
But the members decided they wanted to invite loved ones. More than 30 people
attended the next meeting. Although they discussed dividing up, "nobody wanted
to miss out. There's something about strength in numbers," says Truesdell.
Although Truesdell says the Institute has had difficulty getting
groups off the ground, she thinks this one is successful because it is
"consumer initiated and consumer driven." She adds, "It became clear to us very
quickly that they could speak for themselves and decide what was best for
them."
In addition to providing emotional support, the group has been
able to affect the medical system. For example, members often complained about
the discomfort and occasional complications resulting from the placement of
Hickman chest catheters, which was done on an out-patient basis.
"Everyone was told this was a relatively easy procedure, but for
some it was more complicated," Truesdell says. As a result of feedback the
group gave to doctors, patients now may have the procedure performed in an
operating room, where they can receive anesthesia and where complications can
be handled more easily. Group members also provided mutual support in asking
for more medication before getting bone marrow aspirations.
To facilitate communication between doctors and transplant
survivors, the group has invited doctors to two meetings. Four doctors attended
the first time, and seven came the second time. "I hope the benefit to the
doctors is to see people in their whole lives_not just their medical concerns
but their life concerns. It helps them learn about the psycho-social
consequences of transplant, something they don't necessarily ask about during
medical checkups. They also can see how resilient and articulate these people
are," Truesdell says.
After about a year the first person in the group relapsed. The
members decided she shouldn't be excluded. "That set a new norm. People could
come back if they were in relapse. Now, people can come at any time, bring
anyone they want and stay as long as they want."
Although there are good reasons for operating this way, Truesdell
says it has also created problems. The group has had to cope with the death and
relapse of members. "A lot of doctors feel this is the down side of a group. My
feeling is that it's better to deal with grieving and sadness as a community,
where one can give and get support."
Nevertheless, Truesdell says, "We have lost people who can't deal
with the sadness. We have scared off some who were new members. The issues are
quite different for those out two to three years."
Consequently, the Institute is considering offering a set of six
psycho-educational meetings that would address specific issues for those newly
out of transplant. Members would be invited to meet weekly for six weeks and
sessions would be offered a few times a year. People could then move on to the
other group if they choose.
In addition, a spin-off group of BMT survivors and breast cancer
survivors has formed a volunteer network, in which members meet one-on-one with
people about to go through a transplant.
For some people, the group is the only place where they are
comfortable expressing their feelings. "It's a safe place to feel the gamut of
intense human emotion," Truesdell says. "They help each other. They never
minimize what someone puts forth as a problem. But they give each other ideas
for coping. The group gives members a way to discover and share their
collective wisdom."
For more, call Phyllis Truesdell at the Dana-Farber Cancer
Institute, 617-632-3634. |
