Online exchanges among cancer patients and caregivers: constructing and sharing health knowledge about time

Purpose – The meanings attributed to the quality of a person's illness experience result from important processes of co‐construction not only between healthcare professionals and patients but also among patients and caregivers. In the case of advanced cancer, new treatments extend patients’ lives but they raise the problem of the quality of this “renewed time”. Lay contexts of exchanges appear crucial for orienting the attribution of meaning to the time with cancer and for sharing practices to manage it. Furthermore, the internet is becoming an important space in which cancer patients meet and construct knowledge regarding their illness. The aim of this paper is to study knowledge‐ and practice‐construction among advanced cancer patients and caregivers, and to explore the suitability of online forums for analysis of these processes.Design/methodology/approach – The paper discusses the results of a qualitative study based on one online forum for long‐term cancer patients (second relapse) and one for caregivers. The discussions explored show how patients and caregivers attribute meanings to their time with cancer. Verbatim transcripts of the discussions were analyzed according to the Interpretative Phenomenological Analysis (IPA) procedure.Findings – The findings suggest the system of medical representations regarding health and illness should take greater account of other (lay) systems of representations and that the internet could be a valuable resource to support the development of spontaneous networks of patient and caregivers through which to organize health interventions and to involve patients and caregivers more closely in the care and cure process.Research limitations/implications – The study examines the experiences of a particular subset of patients/caregivers who were internet‐literate and might be considered more “active” in their coping with the disease over a fairly limited time span. These potential limitations are being remedied in continuing research projects.Practical implications – The authors’ experience with this research design suggests qualitative research may be particularly valuable in casting light on emergent phenomena such as spontaneous social networks on the internet, and in encouraging more participative forms of research engagement.Originality/value – These findings may orient therapeutic interventions to be more closely attuned to the needs of long‐term cancer patients and their caregivers. Online forums enable participants to disclose experiences, share knowledge, and co‐construct “good practices” for illness management