Illness Identity in Encountering New Information Networks: A Case Study of Women with Breast Cancer

The women suffering from breast cancer can narrate their life experiences of the disease in cyberspace. They can also turn it into a platform on which they can express and reveal their identity, in addition to reading and writing about the disease. For women, cyberspace has been transformed into a place where they discover their new identity through interaction and giving it a new meaning. They use stories of the disease to rebuild the world of shattered daily life in order to show who they were and who they are. Due to the wide spread of breast cancer among Iranian women especially for the decreasing age of cancer incidents in our country, this illness has received considerable attention. The purpose of the present study is to find out how women with breast cancer use new information networks in the process of understanding and experiencing their disease, and in particular how the patients explain and interpret themselves, their own relationships, and post-illness issues by using these tools.

After a preliminary study, the research was conducted at two hospitals, Shahid Ghazi and Tabriz International Hospital. We visited women suffering from breast cancer, while at the same time they used the new electronic media to cope with their problem, to define their own identity after illness, to create new relationships and social participation, and to receive information. For this purpose, we conducted qualitative interviews based on Grounded Theory with 20 patients about the understanding and experience of the disease and about how they use the virtual world. To analyze these interviews, the basic research codes which actually constitute the main concepts of the study, were identified and named by coding method in the first stage. The following categories were extracted in the second stage: 1- experiencing and defining the disease, 2- identifying aware and empowered patients, 3- contrasting information networks, and 4- signifying thier own identity in virtual space.

By analyzing and describing these categories, we find out that the patients experience major mental and psychological changes that lead to their deep distress. Thus, it creates the new needs for them after the illness and especially after amputation. One of the most important tools that can meet these needs today is an electronic network or cyberspace. Cyberspace is a place where a world of relationships and information on any subject is accessible at any moment. Among the issues available in this space, there are issues related to the body, diseases and the medical field. Information is very essential in order to empower patients. Researchers believe that along with technology advances, we are witnessing the emergence of a new consumer health identity which is called online self-helper. These new identities having access to information, especially through the internet and new technologies, are big steps towards taking responsibility for their own health. By exploring and being active in this space, patients show that they have become active, aware, and empowered actors in this field and wanted to gain control and power over their bodies, not merely being passive observers. The social networks, on the other hand, have the potential to bring people together and create new individual and collective identities through interaction and dialogue. When a patient's reflective writings about herself are digitally discussed in a program, self-expression, self-disclosure, and the relationships created in a social group greatly help a patient to manage her health and accept and cope with the new identity. In sum, the results show that the new information technology is increasingly becoming an area where women with breast cancer not only receive information about their illness but also create narratives about breast cancer. Women with breast cancer are deeply interested in defining their identity and empowerment; therefore, they use cyberspace as an area to create new forms of knowledge, awareness, and functionality in relation to the disease.