Effectiveness of Internet vs. Face to Face Support Groups

Institution: Cancer Support Community - National
Investigator(s): Mitch Golant, Ph.D. - Mitch Golant, Ph.D. - Morton Lieberman, Ph.D. - Morton Lieberman, Ph.D. - Morton Lieberman, Ph.D. -
Award Cycle: 2001 (Cycle VII) Grant #: 7BB-1101 Award: $316,851
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 7BB-1100 -

Initial Award Abstract (2001)
The use of the Internet for delivering health services has seen explosive growth in the past several years. Based on current research we know that 56,000,000 adult Americans go online for help with health problems. Recent surveys indicate that many are from minority communities and the socio-economically deprived. Such growth has not been matched by quality empirical research to understand the implications and potential uses of such internet use.

The study is a collaborative effort investigative teams in two universities, UCSF and Stanford, and a community organization The Wellness Community (TWC) who have worked successfully together for 5 years. We propose a randomized study comparing online (ESG) Wellness Community groups and face-to-face (FTF) support groups to a TWC usual care educational activities group. This will enable us to evaluate the true effects of systematic psychological support delivered in two modalities. Patients will be recruited regardless of their computer skills and after randomization will be offered training and provided E Boxes (Web TV). SeniorNet will provide computer training.

Since TWC is in a position to implement this service quickly and effectively, this study has far-reaching implications. A cost analysis found that TWC FTF is 5 times the cost of their ESG groups. TWC has 20 facilities nationwide serving cancer patients. If found effective, online support groups would be made available to many more women than are served currently, particularly underserved rural populations. As the first random trial of Internet intervention, we believe that the findings may enable increased use of support services for a variety of health problems. The manual for leading online support groups, although based on breast cancer, could be a significant starting point in other health-related Internet support groups.

The CBCRP IDEA I Pilot found: a) women with breast cancer can be successfully recruited and retained for ESG’s; b) two-thirds of the women reside in rural areas or small towns; c) participants showed significant decreases in depression, expressed more zest for life, saw more new possibilities for their future, deepened their spiritual lives and substantially decreased their negative reactions to their cancer pain; and d) critical group processes were isolated that help identify characteristics associated with successful groups.

Three broad questions are asked in this research: 1) Do online TWC support groups improve quality of life? 2) What are the psychological characteristics of women who benefit? and 3) What are the processes of online groups that facilitate beneficial changes?

To answer these broad questions a series of hypotheses will be tested, the primary one being that participation in both TWC support settings will improve their attitudes and beliefs about their illness, quality of life, decreased marital strain and levels of depression compared to the usual-care group. We will recruit 240 primary (stages 1-3) breast cancer patients to participate in this randomized trial for 20 weeks. Measures will include: Efficacy: Depression, Self-Efficacy, Quality of Life, Marital Strain, Personal Growth. Mediators: Personality traits. Moderators: Cancer-Related Coping, Emotional Control, Repression, and Illness Level. Process measures: Leader Behavior, Group Norms, Cohesiveness, Helpful Experiences, Group Content, Analysis of Group Interaction using two computer linguistic dictionaries.

Final Report (2006)
The overall aims of this randomized study were to: I. Evaluate efficacy of face-to-face (F2F) and Online Internet support groups (OSG). We hypothesize that participation in both TWC’s F2F and OSG support will improve attitudes and beliefs about their illness, and quality of life, decrease marital strain and levels of depression. II. To test mediators of group support in both the FTF and OSG.

We were not able to recruit a sufficient number of women to accomplish both of these aims. Details of our recruit efforts and statistics on the sample we studied are provided in the scientific report. An analysis of the OSG vs. F2F groups using the FACTB scale to measure quality of life, the CESD scale to measure depression, PTGI scale to measure emotional growth, and MINIMAC to meassure coping and pain. No significant differences were found in changes over time for both groups or the groups (F2F vs. OSG) on the FACTB, CESD AND MINIMAC measures. The sample size did not permit an analysis for Aim 2. During the course of our work, we soon realized that recruitment was a serious problem and made a number of changes in how we recruited. We also set out, using some of the resources of the BCRP grant (not the field staff) to embark on a series of studies that would broadly expand our knowledge about OSG, particularly peer-facilitated BC groups. These studies are summarized below.

First in importance was the finding that peer facilitated large internet groups for women with breast cancer result in substantial positive improvement in quality of life and lowered depression. Our analysis of peer led cancer OSG suggested that one possible mechanism for this success is the ability of women to search among such groupsfor one that they believe matches their needs through the mechanism of “lurking” before posting a message. Much of our effort during the BCRP grant has been directed towards isolating characteristics of the participants and the group conditions or processes that lead to positive outcomes of the group members. We found that the expression of specific negative emotions in the group is associated with positive change and that professionally facilitated OSGs are more likely to enhance the frequency of such expressions. We found that certain therapeutic factors (helpful group experiences) are linked to positive change. We also found that the norms of the groups (the regulatory group culture) enhanced these HGEs. Leader behavior made a difference and certain types of behavior are more successful in creating a group where participants make positive change. This leader behavior works by enhancing the group’s cohesiveness. When we compared F2F and OSG we found that by and large they are more similar than different in both processes and content of discussion. In a study of those who drop out of OSG, we found that they experience at the outset of the group more fear and anxiety about the group. Finally, in looking at various non-gender related cancers, we found that men rarely gave expression to the critical negative emotion compared to women with the same cancers.

These studies have provided invaluable information on how OSG can be improved to maximize their effectiveness.

Symposium Abstract (2003)
Investigators have linked repression or suppression of negative affect with the incidence and progression of cancer. Implied is that the expression of negative emotions is beneficial. The empirical evidence that the frequency of negative emotions in women with BC is linked to their well being has been studied in a variety of ways. The direct exploitation of this finding in psychotherapy lacks important research, since the studies are based on input-output information. Needed are studies that go beyond the “black box” and generate data on the behaviors of patients in the therapeutic setting itself.

The current studies central question, the comparisons between professional and lay led internet support groups. Eleven groups were examined, 7 led by professionals and 4 by lay leaders. The 11 groups were composed of 4 TWC, 3 Bosom Buddies, 1 CHESS and 3 bulletin boards. The first three groups had closed group membership. The professionally moderated groups included The Wellness Community chat rooms and an asynchronous newsgroup, Bosom Buddies. The lay led groups included CHESS and 3 open participation (“bulletin board”) lay-led asynchronous support groups (Yahoo, IVillage, and WebMD).

The expression of negative emotions in participants’ interaction was scored using the PCAD, a computer text program. Extensive empirical research has established the validity and reliability of scales measuring a variety of emotional states including Anxiety, Hostility-Anger, and Depression.

Professionally led and lay led internet groups were compared using three multivariate analysis of variance. All 3 were highly significant. (Anxiety F=7.1) (DF, 6,166) P=.00; Hostility F=20.5) (DF, 5,167) P=.00; Depression F=19.7) (DF, 7,165) P=.00. Members in the professionally led groups expressed on Anxiety, significantly more death, mutilation, guilt, shame and diffuse anxiety. On the Hostility scales they expressed more overt hostility as wells as higher covert, inwardly directed and ambivalent hostility. On the Depression scales members of professionally led groups expressed more hopelessness, self accusation, psychomotor retardation, somatic, separation and hostile depression.

Groups conducted by professional leaders express significantly more negative emotions than those led by lay leaders. Our analysis of positive emotions indicates that this difference is not simply the product of amount of emotional expression. A review of the interventions by leaders points to a glaring difference in how professional and lay leaders respond to members when they bring up such negative feelings. The professional leaders encourage the further expression of such emotions, believing that such expressions are therapeutic. The lay leaders clearly do not signal that such feelings are illegitimate, but they are more likely to offer support and suggest fighting the cause of these feelings.

Leader behaviors as perceived by cancer patients in professionally directed support groups and outcomes
Periodical:Group Dynamics: Theory, Research and Practice
Index Medicus:
Authors: Lieberman M, Golant M
Yr: 2002 Vol: 6 Nbr: 4 Abs: Pg:267-276

An evaluation of a web-based support group for women with primary breast cancer
Index Medicus: Cancer
Authors: Winzelberg A, Classen C, Roberts H, Alpers G, Dev G, Koopman C, et al
Yr: 2003 Vol: 97 Nbr: 5 Abs: Pg:1164-1173

The launch of the virtual wellness community
Periodical:The Los Angeles Psychologist
Index Medicus:
Authors: Golant M
Yr: 2003 Vol: March/Apri Nbr: Abs: Pg:5-7

Electronic support groups for breast carcinoma: A clinical trial of effectiveness
Index Medicus: Cancer
Authors: Lieberman D, Golant M, Giese-Davis J, Winzelberg A, et al
Yr: 2003 Vol: 97 Nbr: 4 Abs: Pg:920-925

Managing cancer side effects to improve quality of life: A cancer psychoeducation program
Periodical:Cancer Nursing
Index Medicus: Cancer Nurs
Authors: Golant M, Altman T, Martin C
Yr: 2003 Vol: 26 Nbr: 1 Abs: Pg:37-46