‘You can’t feel what we feel’: Multifaceted dyspnoea invisibility in advanced chronic obstructive pulmonary disease examined through interpretative phenomenological analysis

Abstract

Background: More than a symptom, dyspnoea is an existential experience shaping the lives of those afflicted, particularly when its persistence despite maximal pathophysiological treatments makes it pervasive. It is, however, insufficiently appreciated by concerned people themselves, family members, healthcare professionals and the public (dyspnoea invisibility), limiting access to appropriate care and support. Aim: To provide a better understanding of dyspnoea experiences and its invisibility. Design: Interpretative phenomenological analysis of data collected prospectively through in-depth semi-structured interviews. Setting/Participants: Pulmonary rehabilitation facility of a tertiary care university hospital; 11 people (six men, five women) with severe chronic obstructive pulmonary disease (stages 3 and 4 of the 4-stage international GOLD classification) admitted for immediate post-exacerbation rehabilitation. Results: We identified several types of dyspnoea invisibility depending on temporality and interlocutors: (1) invisibility as a symptom to oneself; (2) invisibility as a symptom to others; (3) invisibility as an experience that cannot be shared; (4) invisibility as an experience detached from objective measurements; (5) invisibility as an experience that does not generate empathic concern. The notion of invisibility was present in all the identified experiential dimensions of dyspnoea. It was seen as worsening the burden of the disease and as self-aggravating through self-isolation and self-censorship. Conclusions: The study confirmed that dyspnoea invisibility is a reality for people with advanced chronic obstructive pulmonary disease. It shows dyspnoea invisibility to be a multifaceted burden. Future research should aim at identifying individual and collective measures to overcome dyspnoea invisibility.

Exploring the Experience of Breathlessness with the Common-Sense Model of Self-Regulation (CSM)

“…Most participants (15/21, 71%) did not recall words or phrases related to breathlessness that they found helpful or unhelpful. This absence may suggest the experience of invisibility of breathlessness [ 37 ] (“invisible” also evident in our findings about identity representations, Table S2 ), and may have indicated a reluctance to have clinical conversations about breathlessness by patients and health professionals [ 38 ]. Where recalled, participants in this study preferred words and phrases that reflected their experience of breathlessness and offered hope.…”

‘Involve me and I learn’: an experiential teaching approach to improve dyspnea awareness in medical residents

“…In conclusion, the results of this pilot study support the pedagogical interest of dyspnea-targeted teaching programs incorporating an experiential element. This approach could help healthcare professionals better address the currently largely unmet patients’ dyspnea-related expectations [ 34 ].…”

"In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis

“…To better understand the characteristics and the determinants of the invisibility of persistent dyspnea, we previously conducted a study in patients with severe chronic obstructive pulmonary disease (COPD). This study identified dyspnea invisibility as pleiomorphic, depending on temporality and interlocutors [13] and as an integral part of the patients' lived experience and burden. We reached these conclusions after applying an interpretative phenomenological analysis [14] approach to the content of semistructured patient interviews [13].…”

“…This study identified dyspnea invisibility as pleiomorphic, depending on temporality and interlocutors [13] and as an integral part of the patients' lived experience and burden. We reached these conclusions after applying an interpretative phenomenological analysis [14] approach to the content of semistructured patient interviews [13]. Indeed, we identified four themes relating to COPD-related dyspnea in itself: (1) envisioning one's death by suffocation; (2) losing autonomy and hope;…”

“…It can be complemented by quantitative discourse analysis for corroboration [15] or to make missed themes emerge. In the present study, ancillary to a previous study [13], we employed advanced lexicometric approaches (such as correspondence analysis and descending hierarchical classification) to analyze the content of the semistructured interviews conducted previously [13] and explore the patients' experience of dyspnea with a different methodology. This lexicometric analysis was conducted independently of the previously described interpretative phenomenological analysis [13].…”