From early detection to rehabilitation in the community: reading beyond the blog testimonies of survivors’ quality of life and prostate cancer representation

摘要

Survivors' testimonies can reveal much about men's experiences of prostate cancer and impacts on their quality of life (QOL) during the clinical trajectory of the disease. These survivors' shared thoughts and views were hypothesized to reflect salient features of their lived social representation of prostate cancer. We explored the content of testimonies posted by men to a public blog hosted by a French national prostate cancer patients' association. The study question, "What do French bloggers' testimonies reveal about their lived experiences with prostate cancer, especially regarding their quality of life in community settings, that underpin their social representation of prostate cancer?" guided the exploration and analysis of the textual data. The aims were to better understand men's experiences and predominant thoughts and views, to elucidate patients' behaviours, and to enlighten medical policy and practice. Explore issues of QOL as reported by French prostate cancer survivors in a public blog by: (a) identifying the salient aspects and issues of the experience of living with prostate cancer from the perspective of survivors; and (b) analyzing the content in the posted testimonies regarding perceived and lived impacts of prostate cancer on QOL. A critical ethnographic study guided the selection of textual data from 196 male bloggers' testimonies about prostate cancer posted in the period from 2008 to 2013. Media content analysis method was undertaken on blog testimonies, framed by a multidimensional conceptual framework of QOL. Testimonies focused mainly on medical care and rehabilitation, recovery, health education and self-care, as well as on a global vision of prostate cancer and its impacts on personal views of manhood and masculinity. The language used indicated that political, educative and compassionate discourses were intertwined to create a complex representation of the experience and effects of prostate cancer; this multi-faceted representation can inform the public and professional debate about men's capacity to provide emotional support and problem-solve within a community of interest. Findings, while based on data limited to mostly one-time entries to a French blog, contribute to understanding a unique, collective expression of men's lived experiences of prostate cancer. These anonymous survivors shared their varied reactions, ways of coping, and thoughts on needed change.