Category: COPD / Lung Disease

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Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members.

Our research team has published an article in the International Journal of Qualitative Studies on Health and Well-being

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family 

Abstract:

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death.

Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017-18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3-4 months apart, with a telephone follow-up 2-3 months later. Thematic analysis was conducted including analysis within and across participants.

Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare.

Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a “good death.”

Reference:  Molzahn, A. E., Sheilds, L., Antonio, M.,, Bruce, A., Schick-Makaroff, K., & Wiebe,R. (2021). Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members. International Journal of Qualitative Studies on Health and Well-being, https://doi.org/10.1080/17482631.2021.1893146

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Stories of Living with COPD

Our team is currently working on the results from our interviews with people living with COPD.  If you would like to receive updates on our progress, please feel free to email us at story@uvic.ca.

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Narratives of Living With Chronic Obstructive Pulmonary Disease (COPD): Engaging the Voices of People Experiencing Social Isolation

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.

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Poster Presentation at the Canadian Lung Association Conference

Our research team presented at the Canadian Lung Association in Vancouver.  The poster provided the photos and narratives  that people shared about their experiences of living with COPD,

Abstract: Chronic obstructive pulmonary disease (COPD) is a fatal chronic illness characterized by decreased breathing function and acute events (exacerbations) that can contribute to increased pain, fear, anxiety and depression. When people with COPD have social supports in place, exacerbations are less severe and hospitalization rates are reduced, thereby, overall quality of life is improved.  The number of COPD individuals living alone is increasing, and thus exacerbations are more likely to be an unsupported, solitary experience.  Further, people with COPD are at risk of becoming more socially isolated as their illness progresses, compounding the incidence of depression and anxiety.  Digital technologies (DTs), such as social media and SkypeÔ, have been proposed as a strategy for chronic disease management and social connectedness.  Yet, there is dearth of research examining DTs specific for people living with COPD.

Within the context of a large qualitative, narrative study, the poster presentation will provide an examination of social connectedness/isolation experienced by people living with COPD.  This Canadian Institutes of Health Research (CIHR) funded, longitudinal study involved two in-depth, in-person interviews and one follow-up phone interview over a period of 18 months. Purposeful recruitment was used to connect with 16   people living with COPD and 7 family members. Informed by Reissman’s (2007) narrative inquiry methods,  analysis involved team-based discussions and repeated, close reading of the transcribed interviews.  Narrative analysis revealed the isolating experience of living with COPD was compounded by increased frailty, oxygen therapy and fear of influenza.  Shared narratives included the challenge of sustaining friendships, while other participants referenced DTs significance in remaining socially connected.

Building upon the findings,  possible considerations for DTs to address the multiple layers of social isolation for people living with COPD will be proposed.  This will include a review as to how DTs can support social connectedness and illness experience through information/education, emotional support, peer support, engagement/participation, narration, and personal contact.

Reference: Antonio, M.G, and Sheilds, L. (2018). Digital Technologies’ Potential in Addressing the Social Isolation Experienced with COPD.  Canadian Respiratory Conference, Vancouver, BC. April 12-14, 2018.