Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups

Abstract

OBJECTIVE. There is little evidence of the gain in illness-related knowledge obtained in breast cancer self-help groups. This paper seeks to explore whether participants in self-help groups know more about breast cancer than non-participants and to examine the level of knowledge of leaders of self-help groups in comparison to the other two groups. METHODS. A sample of 727 women affected by breast cancer was interviewed with a self-administered questionnaire assessing knowledge on disease, prevention, and aftercare. The interviewing took place during three different surveys conducted between 2005 and 2009. The data of the second and third survey were used in order to create a larger data base and to include self-help group leaders. RESULTS. Participants in self-help groups knew significantly more than non-participants, although only in the subtests lymph edema and breast-examination. Leaders of support groups scored highest in all subtests. Involvement in a support group was most decisive for respondents' knowledge, but other factors such as age, education, and medical history also had effects. CONCLUSION. Self-help groups provide a considerable potential for acquiring illness-related knowledge. As the participation rate in German breast cancer self-help groups is still quite low, it seems reasonable to generate more interest in this kind of support.

Empowerment in cancer patients: Does peer support make a difference? A systematic review

“…The quality of the studies was assessed using the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies (EPHPP) 46 as it applies to a wide range of quantitative 50,52,53,58,60,64,65,71,[74][75][76] The peer support interventions were mainly held in group settings (17 studies), of which 11 were face-to-face group interventions 48,51,54,55,58,59,61,63,67,68,72 and seven were delivered online. [56][57][58]66,69,70,73 Twelve peer interventions were one-on-one, mostly conducted face-to-face, but also by telephone, or-in two cases-via e-mail.…”

“…The included studies used diverse instruments to measure different dimensions of empowerment (Table 1). Twelve assessed coping (using mini-Mental Adjustment to Cancer (mini-MAC) scale, Brief Coping Orientation to Problems Experienced (COPE), Dealing with Illness Inventory-German Revised (DWI-GR), Functional Assessment of Cancer Therapy (FACT), Electronic Cancer Coping Scale (ECCS)), 49,51,54,56,57,[60][61][62]67,69,70,74 nine assessed self-efficacy (Cancer Behavior Inventory (CBI), Stanford Inventory of Cancer Patient Adjustment (SICPA), General Self-Efficacy Scale (GSE), Stanford Emotional Self-Efficacy Scale-Cancer (SESES-C), Self-Efficacy Scale for Self-Management of Breast Cancer (SESSM-B), Selbstwirksamkeitserwartung (SWE) scale, Cancer Management Self-Efficacy Scale)), 48,52,53,60,[64][65][66]75,76 nine assessed knowledge (Breast Cancer Resources Questionnaire (BCRQ) and newly developed questionnaires), 52,53,55,58,59,[61][62][63]71 two assessed empowerment (Cancer Empowerment Questionnaire (CEQ) and modified own items), 72,73 four assessed self-management skills, 55,58,64,71 two assessed health behaviour outcomes 50,68 and one assessed control. 58 No study assessed health literacy explicitly.…”

“…Study quality was deemed as 'weak' for nine studies, 54,58,59,61,63,69,70,72,73 moderate for 11 studies, 48,50,55,56,62,[64][65][66]68,71,74 and 'strong' for nine studies 49,[51][52][53]57,60,67,75,76 (Table S2).…”

“…Thirteen studies examined outcomes of the interactional component of PE, of which 10 found positive effects consisting of small to medium effect sizes and perceived improvements. 52,55,58,59,[61][62][63][64]71 Three studies did not find any associations between participating in peer support and interactional empowerment. 53,55,62 Selected findings are described in the following.…”

Sharing experiences in a support group: men's talk during the radiotherapy period for prostate cancer

“…Effective leadership is crucial for group stability (Oliffe et al, 2008) and the group should have a professional facilitator and meetings should focus on sharing experiences (Swedish National Board of Health and Welfare, 2007). Participants of conversational support groups had significantly better illness-related knowledge than did a control group (Noeres et al, 2011). Women with breast cancer benefited psychologically from conversational support groups; they experienced friendship, safety, understanding, and a strong feeling of belonging.…”