Our research team shared the stories people offered on their experience of living with COPD, particularly how the progression of the illness can lead to disconnection to ones’ community, friends and healthcare services.
Abstract: To have successful public engagement requires citizens who are willing to share their experiences. However, people living with the greatest burdens of illness may also be the most difficult to locate and engage. Chronic obstructive pulmonary disease (COPD) is an illness that exemplifies unique challenges for public engagement. According to the literature, COPD is underdiagnosed and, compared to other fatal conditions, has fewer dedicated research, community, and palliative care resources. With smoking viewed as the most common risk factor for COPD, the resulting shame and victim blaming may further discourage self-identification and sharing of illness experiences and compound social isolation. Within the context of a large narrative study, this presentation will focus on how social isolation is experienced by people living with COPD and their family members. Twenty-two participants were interviewed up to 3 times over 18 months, six of which were dyads. Shared narratives revealed a shrinking physical world and limited connections to friends, families, advocates, and other individuals living with COPD. Participants described the signage that warned visitors on entry and the visibility and vulnerability of being “out in community” with their oxygen support. People often lived alone and spoke of the physical fatigue related to COPD and the “scary” experience of acute breathing difficulties. During these events, they were hesitant in connecting with others, especially health-care practitioners. The findings from this narrative study will further illuminate the importance of listening to the voices within an illness population that experiences increasing frailty, isolation, and potential stigmatization.
Reference: Antonio, M.G., Sheilds, L., Bruce, A. (2017). Narratives of living with chronic obstructive pulmonary disease (COPD): Engaging the voices of people experiencing social isolation. Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.