A narrative ethnographic exploration of the presence, absence, and impact of meaningfulness in day-to-day life when living with palliative care needs arising from Chronic Obstructive Pulmonary Disease (COPD)

Chronic Obstructive Pulmonary Disease (COPD) is a progressive respiratory disorder characterised by persistent airflow limitations within the lungs. The condition is currently the third leading cause of death worldwide. Living with COPD involves navigating day-to-day life with a relentless and overwhelming symptom burden of breathlessness, chronic cough and sputum production, fatigue and anxiety and depression. This symptom burden inevitably leads to the need for palliative care alongside active treatment for those living with COPD.

The true philosophy of palliative care extends beyond conventional medical interventions and physical symptom management, requiring holistic consideration of the physical, emotional, social, and existential elements of suffering. For those living with COPD, the impact of the condition upon individual’s existential situation is evidenced, with the presence of life meaning being of importance to those living with the condition. The presence of meaningfulness within day-to-day life is of significance within the context of palliative care, through its ability to enable coping with changing life circumstances, and the facilitation of inner peace for an individual. Understanding how meaningfulness is manifest within the day-to-day lives of those living with palliative care needs arising from COPD, alongside the impact of the absence of life meaning is necessary to gain a novel insight into the palliative care needs of this population. By understanding how individuals identify meaning in day-to-day life, this can inform the support required to be delivered by health professionals to maintain this, or for those experiencing an absence of life meaning, to be supported to identify its presence.

The aim of this doctoral study was to explore, through a narrative ethnographic approach, the presence, absence, and impact of meaningfulness within the day-to-day lives of those living with palliative care needs arising from COPD. A narrative ethnographic methodology was used to facilitate a multi-dimensional and deep insight into the existential situations of participants. A set of six specifically designed objects, cultural probes, were used by participants for a two-month period. These included a disposable camera, a journal, and a set of thought-provoking postcards. Each participant then gave a narrative interview within which the completed cultural probes were used to scaffold the discussion. Six individuals from England (United Kingdom) participated within this study. Data was analysed using a structural narrative analysis approach. Data interpretation was facilitated using the triangulation protocol to integrate multiple data sources.
A conceptual framework was developed to illustrate the study’s findings, incorporating both the presence of and interruption to meaningfulness within day-to-day life for those living with palliative care needs arising from COPD. The study findings are presented in three themes: meaningfulness through personal value congruence, meaningfulness through taking control of personal dignity and barriers to identifying meaning through personal value incongruence. The use of cultural probes as a research method with palliative care populations was found to reveal unique insights into the day-to-day lives of the study population. Recommendations are made suggesting possible content to develop an intervention to support those living with COPD to identify meaning within day-to-day life. The study findings will inform healthcare professionals, educators, and policy developers.