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
Disparities>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).


Progress Report 1 (2008)
In the sparsely populated rural Intermountain Region of northeast California (Modoc, Plumas, Siskiyou, Shasta, Lassen, Trinity, Sierra, Nevada, and Tehama Counties), women lack adequate psychosocial support for coping with a diagnosis of breast cancer. However, our partnership has successfully pilot-tested an intervention that holds promise for providing psychosocial support to this population--the use of video-conferencing as a modality for providing professionally led breast cancer support groups that are guided by the content of our "One In Eight" workbook-journal. We are now in our first year of a follow-up study--a randomized clinical trial (comparing women wait-listed to receive the support groups after other women receive them).

This study addresses the 2 aims we proposed in our grant, plus an additional 3rd aim:
  1. Demonstrate that professionally-led support groups using videoconferencing and “One in Eight” are an acceptable and satisfactory form of psychosocial support for women living with breast cancer in nine rural counties in the Intermountain Region of northeastern CA.
  2. Evaluate the efficacy of this support group intervention for meeting the psychosocial support needs of women with breast cancer in these counties.
  3. Describe the types of primary care and breast cancer care for which women in these counties lack adequate access. We added this aim to provide further context and justification for the need for identifying effective sources of psychosocial support for this population.

To address these three aims, we have achieved the following milestones: 1) refined the questionnaires, recruitment materials, and "One In Eight" to better meet the needs of this population; 2) with Marlene Von Friederichs-Fitzwater, Ph.D. our new qualitative researcher, refined this study's qualitative research methods; 3) with Tyson Holmes, Ph.D., our new biostatistician, revised the recruitment and randomization procedures to facilitate recruitment and reduce the threat of "contamination;" 4) hired eight local coordinators to recruit in the nine counties of the Intermountain Region; 5) conducted extensive two-day face-to-face training of the local coordinators in the research protocol on methodological and ethical issues; 6) helped local coordinators complete IRB training; 7) expanded the Community Advisory Board and prepared to meet via videoconferencing; 8) created the quantitative data base for this study; and 9) began recruitment and enrolled the first four participants.

Next year's research goals are to: 1) recruit and assess approximately 60 more participants; 2) randomize and provide support groups to three cohorts of participants (N=60); and 3) conduct followup questionnaire assessments of 60 participants and interviews of 18 participants.


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.