Patients With COPD Report HCPs Are a “Major Source of Stigma”

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Healthcare professionals and public health campaigns are significant sources of COPD-related stigma and can reduce patients’ motivation to stop smoking.

Healthcare professionals and public health campaigns are significant sources of COPD-related stigma, which can reduce patients’ motivation to seek care or stop smoking, according to new research published in the COPD: Journal of Chronic Obstructive Pulmonary Disease.

The systematic review included 29 English-language studies conducted across Europe (66%), Australia (14%), Asia (10%), and North America (10%). The studies included 427 participants in total, ranging in age from 42 to 90. Sixty-five participants currently smoked, 84 formerly smoked, 18 never smoked, and smoking status was unreported in 260 people.

“This review fills in a gap in the deeper analysis of what characteristics of COPD, apart from smoking behavior, lead to stigmatization, how patients react differently to stigmatization of each characteristic, and its potential impact on patients,” wrote Eleanor Rochester, MPH, and colleagues.

Stigma Dimensions

The authors analyzed patients’ experiences through six dimensions of stigma established in previous research:

1. Aesthetic qualities: Does the illness appear unpleasant or unattractive?
2. Course: What are the progression and outcomes of the illness?
3. Peril: Does the illness cause a potential threat to others?
4. Disruptiveness: How does the illness restrict the patient’s life?
5. Concealability: How visible is the illness?
6. Origin: What causes the illness?

Stigma sources were also categorized as one of the following:

• Felt/anticipated stigma, which describes a fear of discrimination that limits people from talking about themselves.
• Self-stigma or internalized stigma, which describes a person viewing themselves as devalued and ill.
• Enacted stigma, which describes the experience of discrimination from others.

Patients’ Experiences

Patients with COPD often feel embarrassed due to uncontrollable coughing, wheezing, and visible symptoms. Physical changes (weight loss, frailty, caved-in chest) also contributed to negative self-perception.

The researchers found that many patients described their condition as “disgusting,” “dirty,” and “ugly,” leading to social withdrawal. Using oxygen equipment and coughing in public intensified feelings of being an outsider. While in public, people experienced fear and embarrassment due to misconceptions about the disease’s contagiousness.

In addition, self-stigma increased as COPD progressed, with patients feeling physically restricted and some even contemplating suicide. Many patients reported feeling helpless due to COPD’s incurability, which reduced motivation for disease management.

Many patients felt ashamed, believing they caused their disease through smoking. Healthcare professionals sometimes reinforced this stigma, and patients reported feeling judged and unworthy of care.

“Five studies described patients’ experience of their healthcare professionals being inattentive to their concerns due to the preoccupation with smoking habits, which intensified feelings of guilt,” the researchers reported.

Patients also reported inadequate psychological support and feeling like “second-class people” in healthcare settings. Patients felt that public perception reduced them to a stereotype of weak character or tobacco addiction.

Of note, patients sometimes continued smoking as a coping mechanism for loneliness.

“Two studies commonly suggested these experiences of stigmatization as a ‘vicious cycle’ or ‘cycle of guilt’ as poor self-esteem and fear of being judged hindered their effort to quit smoking while avoiding healthcare services,” the researchers said.

Call to Action

The researchers determined that patients’ perception of COPD as having a self-inflicted origin, the progressive course of the disease, and disruptions to daily living were the most consequential aspects of COPD stigma.

“These led to avoidance of healthcare, increased risk of mental illnesses, and continuation of smoking. Such responses pose potential risks in the management of their physical health, which may lead to unnecessary hospitalization, more frequent exacerbations, and higher mortality,” Rochester and colleagues said.

The researchers also concluded that excessive emphasis on smoking cessation in healthcare settings exacerbated patients’ feelings of guilt and self-accusation. They called for healthcare professionals to maintain focus on patients’ concerns and expectations.

“Healthcare professionals must continuously reflect on their communication skills and empathy,” Rochester and colleagues wrote. “By exploring patients’ needs, patients can be invited as shared decision-makers and provided with personalized care.”

Studies have shown that patients receiving personalized care adhered to their treatment plans better and experienced improved outcomes.

The researchers also called for efforts to connect patients with mental health services.

“[Patients with COPD] must be informed of available mental health services to improve their prognosis and quality of life. Additionally, campaigns educating the public on different risk factors of COPD can reduce the misconception of it being a self-inflicted disease,” the researchers concluded.