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

Purpose \u2013 The meanings attributed to the quality of a person's illness experience result from important processes of co\u2010construction not only between healthcare professionals and patients but also among patients and caregivers. In the case of advanced cancer, new treatments extend patients\u2019 lives but they raise the problem of the quality of this \u201crenewed time\u201d. 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\u2010 and practice\u2010construction among advanced cancer patients and caregivers, and to explore the suitability of online forums for analysis of these processes.Design/methodology/approach \u2013 The paper discusses the results of a qualitative study based on one online forum for long\u2010term 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 \u2013 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 \u2013 The study examines the experiences of a particular subset of patients/caregivers who were internet\u2010literate and might be considered more \u201cactive\u201d in their coping with the disease over a fairly limited time span. These potential limitations are being remedied in continuing research projects.Practical implications \u2013 The authors\u2019 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 \u2013 These findings may orient therapeutic interventions to be more closely attuned to the needs of long\u2010term cancer patients and their caregivers. Online forums enable participants to disclose experiences, share knowledge, and co\u2010construct \u201cgood practices\u201d for illness managemen