From Victim to Survivor
A study of cancer patients reveals their motivations and desires, and the ways hospitals can reach them
As improvements are made in detecting and treating cancer, the number of cancer survivors across the country is rising. In 2007, there were 11.7 million cancer survivors—nearly quadruple the 3 million in 1971, according to the National Cancer Institute.
This rise in survivorship is unquestionably good news. But the increasing number of survivors also necessitates the development of communities and resources to support these patients as they transition to life post-cancer treatment.
To help the health-care community address these needs, Associate Professor Mark Clark and Assistant Professor Tracey King conducted a study of a traditionally underserved population of survivors who participate in the Women’s Fitness & Support Group at Washington Hospital Center.
Clark and King began studying the group of urban-dwelling, minority women between 50 and 70 years of age in the fall of 2009, on behalf of the hospital’s Washington Cancer Institute.
They found that the primary factors influencing participation ranged from the personal—a referral from a trusted medical source, group and instructor camaraderie, and a belief in the connection between exercise, nutrition, and recovery—to the logistical—transportation, time, and location.
Regardless of their motives, the patients’ participation had far-reaching positive results. Regular attendees reported better physical fitness, changes in eating habits and nutrition, and improved family and personal relationships.
The professors’ qualitative research went straight to the heart of the issue: asking the survivors, in their own words, about the effect the group had on their lives.
“One goal of the study is to identify what specifically has made this group successful, so that its traits can be extended to other groups in other hospitals and in other settings,” King said.
“A big part of cancer survivorship is what we’re studying here: how survivors are supported, their level of physical activity, what kind of nutrition habits they develop, what are their life changes in terms of family—things like that,” added Clark.
In October 2010, Clark and King presented their research findings to the American Institute of Cancer Research’s group on cancer survivorship.
The Women’s Fitness & Support Group initially flopped. Based on her previous research on breast cancer survivors, King theorized that this particular demographic is more accustomed to being the caregivers than to receiving support from others. Case in point: one participant had never talked openly with anyone about her cancer experience—not even her husband.
The majority of the women were also clinically obese, a condition that has been linked to an increased risk of certain cancers. The National Cancer Institute says avoiding weight gain and exercising regularly can reduce the risks of cancer recurrence, so it was vital to introduce those habits to this population.
After the original model failed, the Hospital Center’s Patient and Community Services staff sponsored a fitness group. About 10 women joined, at the encouragement of the hospital’s medical staff.
At first the group focused strictly on fitness, but gradually the women hung around after class, sharing pointers, personal accomplishments, and nutrition and fitness tips. A 45-minute discussion was added after the fitness class, moderated by a psychosocial counselor.
“These women were almost averse to the idea that they need support,” King said. “Marketing this group as a support group doesn’t work with these women. The exercise was the hook that would get them in the door.”
Clark and King stress that health-care decisions are, essentially, high-risk consumer decisions.
“Decisions about your health are complex consumer decisions,” King said. “Whether or not you choose to participate in the group, your decision has major consequences.”
Clark has previously conducted extensive research on high-performing teams, leadership, diversity, and strategic human capital. King’s work focuses on consumer attitudes, risk perceptions, and high-stakes decisions. Both have conducted research in the health-care arena: Clark examined team interactions in surgical units, and King studied the treatment decisions of breast cancer patients.
For this study, the professors asked the participants why they joined the group and what they hoped to gain from it. Their research sought to place the patients’ group experiences in a broader context. Few qualitative studies have examined the combined effects of exercise and emotional support on cancer survivorship.
“What you get from a qualitative study is that deeper, richer understanding of what goes on in people’s lives,” Clark said.
That perspective allowed them to make thorough recommendations to the hospital, which could also be applied to other fitness and support groups across the country.
These included additional space for exercise and storage. At the time of the study, the group was meeting in an auditorium without storage facilities and with limited space for mat exercises and group movement. Clark and King also recommended a second instructor to provide more individual attention and ensure safety, additional classes at varied times to accommodate cancer survivors who work during the day, and a consistent source of funding, such as a grant or budget line item, which could ensure viability or expansion.
Some of the recommendations gained traction. The group received more fitness equipment and an assistant instructor; for a while, a Wednesday night class was introduced, although budget cuts at the hospital hindered the ability to offer it.
“The group received a lot of promotion and publicity in the hospital and within the community through our presentation at AICR,” Clark said. “It gives more light to this type of program, and makes hospitals more likely to say, ‘We should offer a program like that, too.’”
Currently, a core group of eight to 10 women take part in a roughly two-hour session each Wednesday. Since October 2008, 43 female cancer survivors have participated in the program.
Many of the participants joined the group at the recommendation of a trusted health-care worker who advocated weight loss, fitness, and dietary changes.
One patient reported that she joined the group after Dr. Mark Boisvert, her surgeon, noted at a follow-up exam that she was obese.
“And I said, ‘Excuse me! I am not obese,’ but I just had not taken a good look at myself in the mirror… my weight was out of control,” the patient told the professors.
The fitness class was taught by a breast cancer survivor who, although many years younger, could relate to the survivors’ experiences. Many of the women were unsure about joining an exercise group, worried that it would be too strenuous, but they found the strength, balance, and cardiovascular endurance training manageable. The certified fitness trainer encouraged the women to go at their own pace and modify exercises if they were sore or in pain after surgeries and chemotherapy.
Outside of class, the women kept weekly exercise logs and wore pedometers to track activity levels. They also held book discussions, healthy-cooking classes, and a month-long walking contest, “Walktoberfest.” Some participants kept a food diary as well.
Regular participants said they made changes in their exercise and nutrition-related behaviors and saw improvements in their family and personal relationships.
Knowledge of participants’ lives beyond the group will give program administrators a greater understanding of the relationship between the program and future health outcomes such as quality of life and cancer recurrence.
One participant told the researchers, “I definitely changed the way I eat and where I purchase my food from.”
The women even pass on the information to their friends, family, and church groups.
“These are women who didn’t think they could do this themselves,” Clark said, “but now they are sharing what they have learned.”