Abrindo espaços : grupo de apoio online para mulheres com câncer de mama

Abstract

Breast cancer has high prevalence among women and major effects on the body and on the psychological and psychosocial domains. The participation in support groups and in self-help groups is a traditional coping strategy to deal with problems associated to diseases and its treatments. With technological innovations, especially the internet and the virtual communities, new forms of seeking help through group participation appear. The objective of the present research was to understand the meanings attributed by women with breast cancer diagnosis to the experience of participating in a breast cancer-related online support group. In order to achieve that goal, we investigated an online support group based on Facebook. The method included two procedures to gather data: a) a compilation of a number of publications on the website (Facebook timeline) made by women who participated in the online support group and of the answers to those publications. We collected 200 publications and 660 answers; b) semi structured interviews based on an open set of questions conducted with four women participants in the online group, including the founder of the group and one of its administrators. We analyzed the publications and the answers collected on the website with the software IRAMUTEQ, and the answers to the semi-structured interviews with Thematic Content Analysis. The results obtained with the publications show two major axes: on one hand, the participants formulated “requests of information and of experiences descriptions” about surgeries, effects of the treatment on the body, diagnostic, and about the cancer as an “unknown element”. On the other hand, they requested encouragement with messages related to religious beliefs. Regarding the answers to the publications, the main axes were “the knowledge and the actors of the treatment”, highlighting the physician and the chemotherapy, and “beliefs and motivation”, highlighting religiousness and the motivation to deal with the cancer. The analysis of the interviews revealed that the following meanings (Themes) were relevant to the motivation to join the group and to keep participating in it: the “emotional condition” that the women experience when they find out about the cancer, described as a “shock”; the need to receive information and to exchange experiences which allow to cope better with side effects of treatment and with anxiety; the inexistence or the inadequacy of the face-to-face support groups; the insufficiency of the information transmitted by physicians and by other health professionals, and the need of emotional support from people who were living the same experience. We discuss that those factors allow the participant to elaborate the beliefs and the feelings that they are not alone, that they are not the only ones to face cancer and that the cancer is not necessarily a “death sentence”, but rather a disease that can be treated. The participants perceived the medical knowledge to be important and “true” but also “insufficient” to cope with the experience of cancer and its treatment. They perceived the knowledge of the other participants about cancer to be very important and to be a knowledge validated by experience. We conclude that the online support group was able to provide constant help and constitutes a valuable complementary tool for the treatment of breast cancer