Expanding Rural Access: Distance Delivery of Support Groups

Institution: Stanford University
Investigator(s): Cheryl Koopman, Ph.D. - Mary Anne Kreshka, M.A. - Jim Perkins, DrPH - Susan Ferrier, R.N. -
Award Cycle: 2007 (Cycle 13) Grant #: 13BB-2400 Award: $290,337
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 13BB-2401 -

Initial Award Abstract (2007)

Strong research evidence demonstrates that professionally led support groups can significantly improve quality of life for women with breast cancer. However, women with breast cancer who live in rural areas have little or no access to professionally led support groups. Northern Sierra Rural Health Network (NSRHN) serves a nine-county region of NE California covering 33,000 square miles with an average of fourteen residents per square mile (compared to two hundred thirty-two for the state as a whole). The primary sources of medical care are community health centers and small rural hospitals. Residents have to travel great distances over two-lane roads to access specialty care.

In our CBCRP-CRC pilot study conducted collaboratively by NSRHN and Stanford University in 2003-05, we tested the feasibility of offering professionally led support groups to women with breast cancer using the workbook journal “One in Eight” by videoconferencing. A small group of women can be together in one location that is familiar to them (their local clinic), while they participate interactively with a facilitator and other women at other sites by video. Using a split-screen, the women in each site see the women in all the other sites and the facilitator. Based on the success of that project, we are proposing a controlled study to assess the general acceptability and therapeutic value of this support group format on a larger sample of women.

The study will answer two questions about women with breast cancer in rural communities: 1) Will they find this support group format utilizing videoconferencing acceptable and rewarding?; and 2) Will they report a greater sense of emotional and informational support, and less depression and traumatic stress, than the control groups of women who wait to participate until after the first groups have ended?

A total of 100 women with breast cancer in the north state will participate in the study. They will be randomly assigned either to an immediate eight-week support group using videoconferencing and the workbook journal, or an eight-week group that will begin after the first group ends (“wait-listed”). The women who are wait-listed will serve as the control for the women receiving the support group. The women in both groups will complete questionnaires before and after the first group. Results of the women who participated in the group will be compared with those who did not. Thirty of the women in the groups will also be interviewed afterwards to get their direct feedback on the support groups. The wait-listed women will receive the support group after their data have been collected.

Videoconferencing technology allows multiple sites to connect into real-time interactive meetings. Thus, women isolated by distance, weather and cost can experience the benefits of interpersonal support without leaving their home communities. NSRHN is the largest rural telemedicine network in California, with equipment in 31 rural/frontier healthcare facilities. It has been used primarily for specialty medical consults (over 5,000 since 2000). This technology is increasingly available in rural communities throughout the state and the nation. We are proposing an innovative use of this already existing network to fill a need for professionally led support groups for women with breast cancer. Over 2.5 million women live in rural California statewide, over 33 million in rural areas across the United States. These figures suggest that over 312,000 women in California, and over 4 million women nationwide, could potentially benefit from support groups by videoconferencing. This project will also suggest the effectiveness of videoconferencing support groups for other conditions (e.g., rural residents with HIV/AIDS; family caregivers of individuals with dementia).

Final Report (2012)

Many women who live in rural areas lack access to support groups to help them to better cope with having been diagnosed with breast cancer. This community-based participatory research examined the acceptability and efficacy of a novel intervention for women diagnosed with breast cancer who live in rural communities. Video conferencing was used to deliver breast cancer support groups led by a professional support group facilitator and guided by a workbook-journal entitled One in Eight: Women Speaking to Women, to educate women about other women’s experiences and alternative approaches for coping and to provide women with emotional support. This innovative treatment is based on supportive-expressive group therapy--whose goals are to facilitate emotional expression, bolster social support and encourage active coping when feasible.

Sixty nine women were screened, recruited, assessed, and randomly assigned to either immediately receive the eight weekly sessions of the support group intervention or to receive it after the three month follow-up assessment that followed the immediate support group condition. A qualitative analysis was conducted based on the interviews of 24 women drawn from a stratified random sample of the participants. The results indicated that women found this intervention highly acceptable, satisfactory, and helpful. Although the quantitative findings did not find a greater significant decrease in overall depression and PTSD symptoms among women randomized to the support group compared to those in the waitlist group, there were overall decreases in these symptoms in the follow-up; in secondary analyses the CES-D somatic subscale showed a significantly greater decline among those receiving the support group compared to those who were waitlisted. Women receiving immediate support group also showed a greater increase in satisfaction with social support, although this difference did not reach statistical significance. Data on the women's access to healthcare identified several problems, such as that 72% of women lived more than 30 miles distance from health specialists in breast cancer--a distance considered to be a barrier to access. Although our intensive recruitment efforts in the local communities fell short of the 100 women that we tried to recruit, a number of women participated and were willing to travel weekly to their videoconferencing sites. We learned a number of lessons about recruitment strategies, which are now published. We established strong and trusting relationships with people in many local communities in Northern California, which we are now building on by developing a follow-up pilot study application to the BCRCP. Hopefully the knowledge gained from these results can provide a basis for using this intervention throughout rural California and beyond to better meet the psychosocial needs of women who live in rural communities who have been diagnosed with breast cancer.

Symposium Abstract (2010)

Cheryl Koopman, Ph.D., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA; Mary Anne Kreshka, M.A., Sierra College, Rocklin, CA; Tyson H. Holmes, Ph.D., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA; Marlene von Friederichs-Fitzwater, Ph.D., M.P.H., Department of Internal Medicine, University of California, Davis, School of Medicine, Sacramento, CA; Rebecca Parsons, LCSW, Sierra Nevada Memorial Hospital Comprehensive Community Cancer Center, Grass Valley, CA; Susan Ferrier, B.S.N., The Sierra Fund, Grass Valley, CA; Alexandra Aylward, B.A., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA; Adelaida Castillo, M.A., Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA; and Kathy Graddy, A.S., Graddy Graphic Design, San Francisco, CA

In 2004, the Institute of  Medicine identified the support group as the most common and useful intervention for women with breast cancer. Breast cancer support groups are described as meetings of patients/survivors led by a professionally trained facilitator, often a counselor or social worker, where there is an exchange of information and learning among the participants.  Unfortunately, women in rural areas often do not have access to such support groups. This community-based participatory study reports on the quantitative and qualitative outcomes of a video conference breast cancer support group led by a professional support group facilitator using a workbook-journal entitled One in Eight: Women Speaking to Women, created for women who live in rural areas and have been diagnosed with breast cancer. One in Eight was developed to educate women about other women’s experiences and alternative approaches for coping with breast cancer and to provide women with a sense of emotional support through a printed medium.  It draws from supportive-expressive group therapy, which encourages expression of distressing emotions, improving social support and encouraging active coping when feasible. Over the course of this study, participants were assigned to eight groups conducted via videoconferencing, with each group comprised of eight weekly 90-minute sessions. The group facilitator was based in Grass Valley, CA, and women participated from the rural counties of northern California at four videoconferencing sites. For the qualitative arm of the study, the tapes were transcribed for coding and analyses; two independent coders developed a coding manual, coded the tapes, tested for inter-coder reliability and analyzed the results. A random selection of participants was also surveyed in telephone interviews. Common themes and patterns were then identified and included categories of Diagnosis, Fears, Doctor/Patient Communication, Coping, Survivorship, and Benefits of the Support Group. In addition to increasing our knowledge about the breast cancer experiences of women who are more isolated, the women reported the benefits they gained from participating in the video conference support group ranging from “reduced anxiety and fear,” and “ease of use and comfort level with the process of videoconferencing,” to “learning from each other what our doctors did not tell us.”The findings will be shared with the participating communities and used to inform services and resources for rural women diagnosed with breast cancer.