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Review Article | DOI: https://doi.org/10.31579/2692-9406/063
*Corresponding Author: Iqbal Akhtar Khan, Independent Scholar, Lahore, Pakistan.
Citation: Iqbal A Khan, Hamza I Malik. (2021) Stigma towards Patients with Chronic Obstructive Pulmonary Disease: To Help or To Judge?. Biomedical Research and Clinical Reviews. 4(3); DOI: 10.31579/2692-9406/063
Copyright: © 2021 Iqbal Akhtar Khan, This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Received: 19 April 2021 | Accepted: 15 July 2021 | Published: 19 July 2021
Keywords: chronic obstructive lung disease; social discrimination; stigma; self- management; patient engagement; empowerment
Chronic Obstructive Pulmonary Disease (COPD), the third leading cause of mortality worldwide, is a highly incapacitating irrevocable health problem, with pulmonary and extra-pulmonary manifestations. According to Suzanne Hurd and Claude Lenfant, it is “the only chronic disease for which the finger of blame can be pointed to a single risk factor – tobacco smoking”. However, only 15-20% of smokers are afflicted. Whereas smoking is far from being the only cause, substantial proportion of COPD cases cannot be explained by smoking alone. The visibility of distressing and frightening physical manifestations of symptoms leads to serious ‘‘observable’’ consequences, such as disability or lack of control, public use of oxygen and rescue inhalers. As a result “they are disqualified from full social acceptance”. However, the stigma is not the only factor responsible for the miseries of those with COPD. In fact, there are many misconceptions in this scenario which have been discussed. The need of a huge awareness campaign for the public to improve their understanding of lung diseases (notably COPD) has been highlighted. The patient, healthcare professionals and the health services should be prepared to play their new role in the management of a chronic disease like COPD “requiring “ongoing management over a period of years or decades”. The importance of a self-management strategy has been emphasised.
“If a lung disease takes someone’s breath away, he or she should be given the same treatment – both socially and medically – as anyone else dealing with any kind of disease. Sadly, stigma plays a significant part in the physical and mental well-being of Canadians with lung disease”.
Terry Dean—President and CEO-Canadian Lung Association [1].
Chronic Obstructive Pulmonary Disease (COPD), the third leading cause of mortality worldwide is a complex, multifaceted, highly incapacitating irrevocable health problem, with pulmonary and extra-pulmonary manifestations. It is usually associated with significant concomitant chronic diseases and is an important public health challenge, throughout the world.
In the recent past, numerous reports, from different spots on the globe, have been published regarding stigmatisation of patients with COPD, by general public and healthcare providers.This is based on their impression that “it is a self-inflicted disease caused by smoking and the sufferers deserve no sympathy”. Canadian Lung Association [1] and British Lung Foundation [2] have expressed their concern and have urged to stop this prejudice. The seriousness of the issue necessitates that it should be discussed in detail.
What is Stigma? And its triggers? And impact?
“Lung disease is not a sentence that people should serve in a prison of isolation. And imposed solitude is just one of the results of stigma”.
Terry Dean —President and CEO Canadian Lung Association [1].
Top of Form
Stigma, a mark of disgrace associated with a particular situation, attribute or individual, has a long and venerable history. In ancient cultures, both Greek and Roman, the word stigma described tattoos and burn marks inflicted into the flesh of criminals and slaves. In medieval Europe, clipped ears were also added to these marks. By the 18th century, stigma extended to signs of disease or physical degeneration.
Erving Goffman, Canadian sociologist, states that stigma is “an attribute that is deeply discrediting” that reduces someone “from a whole and usual person to a tainted, discounted one”. The stigmatized, perceived as having a “spoiled identity”, is disqualified from full social acceptance’. [3].
Dudley describes stigma as “stereotypes or negative views attributed to a person or groups of people when their characteristics or behaviors are viewed as different from or inferior to societal norms” [4].
(a) Inciting Factors
—Visibility of physical manifestations of symptoms that lead to serious ‘‘observable’’ consequences, such as disability or lack of control, public use of oxygen and rescue inhaler. [5]
— The current tobacco control campaigns seem to have a stigmatising effect on the smoker, not only the act of smoking [6].
—In a population-based study using a sample of current and former smokers in New York City, aimed at investigating the determinants of stigma, it was found that apprehension about the health outcomes of smoking, discriminatory attitude towards the smokers and former smokers and social norms and practices were related to smoker-related stigma [7].
(b) Attitude of the On-lookers
A survey was conducted in 2018, by the Canadian Lung Association, to investigate the depth and extent of stigma surrounding lung diseases in Canada [1]. The key findings were as following:
• 29% of the respondents admitted that they felt uncomfortable on seeing someone with an oxygen tank.
• 11% of the respondents said those who smoke deserve COPD.
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“Nature caused us all to be born equal; if fate is pleased to disturb this plan of the general law, it is our responsibility to correct its caprice, and to repair by our attention the usurpations of the stronger”.
—Maurice Blanchot (1907-2003)—French Literary Theorist.
Alison Cook, Director of External Affairs at the Asthma UK and British Lung Foundation Partnership, and Terry Dean, President and CEO Canadian Lung Association, have highlighted the need of a huge awareness campaign for the public to improve their understanding of lung diseases ( notably COPD). However, only this much is not sufficient. The patient, healthcare professionals and the health services should be prepared to play their new role in the management of a life-long disease like COPD.
COPD is a chronic condition. Whereas the WHO defines chronic diseases as requiring “ongoing management over a period of years or decades” [35], Holman and Lorig [36] suggest a patient-healthcare provider partnership as a key in their management. This is a team approach, with protocol of shared decisions, aimed at providing meaningful and high-quality lifelong contact within the existing healthcare system. How to proceed with this partnership agenda?
As a part of a wider UK program "Improving Breathlessness”, a study was conducted which had a qualitative design based on Grounded Theory. The results showed that the low access to services by COPD patients is due to the nature of breathlessness itself, and the way the symptom is addressed by institutions, such as health care services, which discredit the patient's experience [11]. To enhance utility of the existing health system, we need to organize a high-quality healthcare team, adequately trained in understanding the depth of the problem and the required management protocol.
The technical head should be the physician with COPD nurse and respiratory physiotherapist as associates. In the present setup the “Lifestyle Medicine Physician” comes close to WHO’s Five Star Doctor (Care Provider, Decision Maker, Communicator, Community Leader and Manager). Additionally, when equipped with the tools of motivational competency and a well-defined health-behavior change skill, he is able to introduce meaningful, measurable and attainable lifestyle interventions which are acceptable, doable and enjoyable for the target group.[ 37]. In self-management conceptualization, the patient is responsible for his own care, with Empowerment, a process meant to enable patient to gain control over his health. The physician, on the other hand, would be taking the responsibility of a mentor, technical adviser and professional guide. His role is a strong determinant of the level of “Patient Engagement” which is defined as “actions individuals must take to obtain the greatest benefit from the health care services available to them” [38]. The fitting closing sentence would be inspiring and instructive message from Terry Dean: “No matter how or who gets lung disease, everyone deserves positive outcomes……We are there to help, not to judge”.
Funding
This research did not receive any grant from funding agencies in the public, commercial, or not-for-profit sectors.
Conflicts of interest
The authors have no conflicts of interest to disclose.
Acknowledgment
The authors are highly grateful to Prof. Nicolino Ambrosino, Respirologist (Italy), for his scholarly advice to improve the manuscript.
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