The Experience of Stigma in Chronic Obstructive Pulmonary Disease

Abstract

People with chronic obstructive pulmonary disease (COPD) can experience severe dyspnea, tenacious secretions, and a disruptive cough. They often struggle with daily activities and over time tend to decrease the amount of time they spend outside the home. The functional decline accompanying these changes is not adequately explained by physical changes alone. This descriptive, qualitative study describes social changes and experiences of stigma from the perspective of people with moderate to severe COPD. A total of 16 participants (11 men, 5 women) participated in individual interviews regarding effects of COPD on social relationships and experiences with COPD-related stigma. Participants were aware of the potential for stigma related to COPD. Emerging themes included the prevalence of blame related to smoking, both from others, including health care providers, and from themselves. Although many decreases in social activities appear to be pragmatic adaptations to functional limitations, these decisions may also be attempts to avoid potentially stigmatizing situations.

Acceptability and feasibility of pulmonary rehabilitation for COPD: a community qualitative study

“…15,23 One of the underlying themes behind fears of criticism and a feeling of unworthiness may lie in the sense of stigmatisation of COPD sufferers and the feelings of self-blame and disgrace described by Halding et al 26 Such stigmatisation becomes more powerfully experienced in interactions with strangers and may augment resistance to participation in PR. 27 Other patients with COPD are likely to have such an acceptance of their disease and the slowly changing state of their health that they may not expect therapeutic interventions such as PR to offer hope of symptom improvement. 28 Implications for future research, policy and practice…”

Emotional Intelligence: A Novel Outcome Associated with Wellbeing and Self-Management in Chronic Obstructive Pulmonary Disease

“…Negative emotions are prevalent among individuals with COPD (45)(46)(47), to the extent that many feel unworthy of treatment, owing to their shame about being smokers and the stigma of COPD as a self-inflicted disease ORIGINAL RESEARCH (3,48,49). These negative emotions or feelings of inadequacy may cause some individuals to delay seeking help (50), thereby impairing self-management and further facilitating mounting symptom severity.…”

What is Your Understanding of Your Illness? A Communication Tool to Explore Patients’ Perspectives of Living with Advanced Illness

“…These finding are concerning as previous research shows that patients who smoke often struggle with issues of stigma and regret. [31][32][33] Physicians may note the reference to causality and use it as an opportunity to explore unmet emotional needs. Rather than pursue the logic of causality, clinicians may attend to underlying emotions with statements like "It sounds like you've been thinking about choices you've made.…”