A Support Group Alternative for Rural and Isolated Women

Institution: Stanford University
Investigator(s): Cheryl Koopman, Ph.D. - Mary Anne Kreshka, M.A. -
Award Cycle: 1999 (Cycle V) Grant #: 5BB-1801 Award: $588,328
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

Initial Award Abstract (1999)

Women diagnosed with breast cancer require immediate and continuing education and psychosocial support. Support groups, the most common forum for providing these services, are unavailable to women in rural communities and are difficult to access for women in certain isolating circumstances. The Sierra-Stanford Partnership has developed and pilot-tested an alternative form of education and psychosocial support: a Workbook-Journal. This intervention: 1) is accessible to all women with breast cancer, particularly underserved, isolated and minority women; 2) is inexpensive, for women with limited resources; 3) provides a guide to breast cancer information and support sources; 4) offers a variety of active coping strategies for women isolated by geography, age, disability, or minority status; and 5) communicates emotional support to women newly diagnosed with primary breast cancer.

Based on the findings from a BCRP-funded pilot study, in this three-year study we aim to: 1) evaluate the short and long-term effectiveness of the Workbook-Journal for improving psychosocial adjustment, increasing active coping, and improving emotional support in women newly diagnosed with primary breast cancer and receiving their treatment in an HMO; 2) improve breast cancer knowledge in women newly diagnosed with primary breast cancer in an HMO; 3) explore possible predictors of rural and isolated women who would benefit most from the Workbook-Journal; and 4) assess the effects of this intervention on the number of medical care phone calls and office visits.

We will recruit 200 women from the Breast Health Center in Kaiser, Sacramento, to participate in a randomized clinical intervention trial. Particular efforts will be made to recruit underserved, isolated, and minority women. Women will be randomly assigned to one of two conditions after a baseline assessment: Education (EDUC) or Workbook-Journal + EDUC (WKBK). Women will receive follow-ups at 3-, 6-, and 12-months. Use of psychosocial services will be tracked and frequency of medical phone calls and medical visits will be determined by chart review.

We hypothesize that women in the WKBK condition will show better psychological adjustment (lower post-traumatic stress disorder symptoms, less depression), more active coping (higher fighting spirit, less fatalism), and higher emotional support than women in the EDUC condition. We hypothesize that women in the WKBK condition will have more knowledge about breast cancer and treatment than women in the EDUC condition. We also hypothesize that women who have higher levels of post-traumatic stress disorder, depression and life stress and lower levels of social support at baseline, will show more improvement after receiving the Workbook-Journal than women with lower baseline levels of post-traumatic stress disorder, depression and life stress, and higher levels of social support. And, finally, we hypothesize that women in the WKBK condition will make fewer phone calls to their oncology providers and have fewer medical office visits than women in the EDUC condition.

Final Report (2004)

Women who have recently been diagnosed with breast cancer often experience posttraumatic stress disorder (PTSD) symptoms, depression, and difficulty with coping in response to this knowledge and to medical treatment. Many women diagnosed with breast cancer may also experience additional challenges and may be at risk for social isolation due to characteristics such as being older, of an ethnic minority background, unemployed, physically handicapped, less educated, or living at a considerable distance from their health care providers.

The intervention that we have developed, in response to the psychosocial needs of these women, and evaluated for this study is called One in Eight: Women Speaking to Women, a Breast Cancer Workbook-Journal. Our participants were newly diagnosed breast cancer patients whom we recruited through a health maintenance organization (HMO), Kaiser Permanente.

We enrolled 150 participants from three Kaiser Permanente facilities in the greater Sacramento area. The participants were randomly assigned to one of two conditions: receiving the workbook-journal "One in Eight" in addition to receiving educational materials or receiving educational materials alone. One hundred and thirty-four women (89%) completed the 3-month follow-up, and 129 women (86%) completed the 6-month follow-up assessment. At baseline, we found 39.3% (59/150) of the women met criteria for likely clinical depression (indicated by scoring at or above 16 on the Center for Epidemiologic Studies – Depression scale). Furthermore, 16.7% (25/150) of the women met criteria for likely PTSD in response to their breast cancer diagnosis at baseline, scoring at or above the cut-off score of 44 on the PTSD Checklist-Specific.

We found that women randomized to receive the One in Eight workbook-journal reported greater reductions in depression symptoms at the 6-month follow-up assessment than women who received usual care. Furthermore, among women who met criteria for likely depression at baseline, those who were assigned to receive One in Eight reported greater reductions in their depression symptoms at both the 3- and 6-month follow-ups. Also, among women who met criteria for likely PTSD at baseline, those who received One in Eight reported greater reductions in PTSD at the 3-month follow-up. While receiving the Workbook-Journal did not appear to be associated with greater use of active coping skills, women who received the One in Eight intervention reported significantly greater improved knowledge of how to cope emotionally with breast cancer at both the 3- and 6-month follow-ups. Also, we found that women who lived at a greater distance from their primary care providers, who were older, who were hearing impaired, and who were of an ethnic background were more likely to benefit from receiving the Workbook-Journal.

The contribution of this research to CBCRP's mission to help reduce the human and economic costs of breast cancer is that the use of a workbook-journal intervention that addresses possible concerns underlying PTSD symptoms and depression and that can be disseminated through health care providers such as HMOs serving many newly diagnosed women who may be at risk for social isolation.

Symposium Abstract (2003)

This study was initiated by women survivors of breast cancer living in a rural community in California who formed a partnership with academic researchers to develop and evaluate the effects of “One in Eight,” a community-based workbook-journal for geographically and economically isolated women diagnosed with primary breast cancer. After a pilot study demonstrated that this psychoeducational invention was effective in reducing traumatic distress and improving coping among subgroups of rural women living with breast cancer, this larger study was implemented. Our partnership was joined by Dr. Bodai, head of the Kaiser Foundation Research Institute.

This current study was conducted to evaluate the short-term and longer-term effectiveness of “One in Eight” in helping women who are newly diagnosed with breast cancer to psychologically adjust to their diagnosis, cope with their cancer diagnosis and its treatment, and feel emotionally supported. We also wanted to examine the psychological needs of this HMO population of women newly diagnosed with primary breast cancer. The recruitment sites included three Kaiser facilities in the greater Sacramento area. The sample included 151 participants who were enrolled into the study, assessed at baseline, randomized to intervention condition (workbook-journal plus educational materials/ educational materials alone) provided with the intervention, and then reassessed at 3- and 6-month follow-ups. The sample was predominantly comprised of women from groups that tend to be socially isolated and underserved, including age 65 or older (32%), living over 20 miles from their health care facility (35%), disabled with a hearing loss (17%) or other physical impairment (18%), having a high school education or less (17%), and being unemployed (40%). Participants also included 13% of ethnic minority background (3% Native American, 3% Asian American, 1% African American, and 3% Latina/Chicana) and 2% lesbian. Follow-up rates for the 3-month and 6-month assessments, respectively, were 89% and 85%. At baseline 64% of the women met screening criteria for clinical depression on the Center for Epidemiologic Studies–Depression scale. Furthermore, 15% of the women at baseline met screening criteria on the Posttraumatic Stress Disorder Checklist–Specific scale for posttraumatic stress disorder in reaction to their diagnosis and treatment for breast cancer. Both depressive symptoms and traumatic stress symptoms are found to be far higher in this population than in previous studies of women diagnosed with breast cancer. This underscores the importance of evaluating interventions such as “One in Eight” to reduce these depressive and traumatic stress symptoms.

Psychosocial Intervention for Rural Women with Breast Cancer
Periodical:Journal of General Internal Medicine
Index Medicus: J Gen Intern Med
Authors: Angell KL, Kreshka MA, McCoy R, Donnelly P, Turner-Cobb JM, Graddy K, Kraemer HC, et al
Yr: 2003 Vol: 18 Nbr: 7 Abs: Pg:499-507

Distress, coping, and social support among rural women recently diagnosed with primary breast cancer
Periodical:The Breast Journal
Index Medicus:
Authors: Koopman C, Angell K, Turner-Cobb J, Kreshka MA, Donnelly P, McCoy R, Turkseven A, Graddy K
Yr: 2001 Vol: 7 Nbr: 1 Abs: Pg:25-33