Stigma Experiences in People with Chronic Obstructive Pulmonary Disease: An Integrative Review

Figures & data

Figure 1 Flow diagram of integrative review.

Abbreviation: COPD, chronic obstructive pulmonary disease.

Table 1 Characteristics of Included Studies

Author, Year, Location	Research Aim	Study Design	Sample Characteristics	Main Findings	Methodological Quality
Arne, Emtner, Janson and Wilde-Larsson,^Citation30 2007, Sweden	To gain an understanding of patients´ perspectives and perceptions of COPD at the time of diagnosis	Qualitative study using grounded theory	People who were newly diagnosed with COPD or with suspected COPD (N = 10) Age (mean) = 63 yrs Smoking status: former (n = 6); current (n = 4)	Becoming physically restricted is a key indicator of developing disease and getting a diagnosis was crucial for the patient. Shame was apparent throughout the interviews and impeded study participants’ taking action.	80.0%
Berger, Kapella and Larson,^Citation31 2011, United States	To describe social changes and experiences of stigma from the perspective of people with moderate to severe COPD	Descriptive, qualitative study	People with moderate or severe COPD (N = 16) ● Age (mean) = 70 yrs ● Smoking status: former or current (n = 16)	Study participants were aware of the potential for stigma related to COPD. Noted themes included the prevalence of blame related to smoking, both from others, including health care providers, and from themselves.	80.0%
Bragadottir, Halldorsdottir, Ingadottir and Jonsdottir,^Citation32 2018, Iceland	To gain a better understanding of having COPD from the lived experience of patients and their families	Qualitative, phenomenological study	i) People with COPD (n = 22) Age (range) = 51–68 yrs Smoking status: never (n = 1); former (n = 17); current (n = 4) ii) Families (n = 15)	Learning about and becoming diagnosed with COPD was a long and arduous process. Study participants did not realize the imminent threat of COPD to their life.	66.7%
Earnest,^Citation33 2002, United States	To describe and explain the patterns of adherence to supplemental oxygen	Descriptive, qualitative study of a case series	People with COPD who use long-term supplemental oxygen (N = 27) Age (mean) = 67 yrs Smoking status: not reported	Three distinct patterns of adherence to supplemental oxygen theory were as-needed use, part-item use, and full-time use. Adherence to oxygen tended to increase with time and was often associated with significant personal compromises.	83.3%
Fusi-Schmidhauser, Froggatt and Preston,^Citation34 2020, Switzerland	To explore the experiences of patients and informal carers in living with advanced COPD as well as their awareness about palliative care provision in advanced COPD	Qualitative, descriptive study	i) People with COPD (Stages III and IV) (n = 20) Age (mean) = 69 yrs (range: 63–76 yrs) Smoking status: former (n = 9); current (n = 11) ii) Informal carers (n = 20)	Daily activities were highly influenced by COPD symptoms. A range of psychological challenges along the disease trajectory, with feelings of guilt, discrimination and blame, were reported. Most of the participants had no knowledge of palliative care.	83.3%
Gysels and Higginson,^Citation35 2008, United Kingdom	To explore the experience of breathlessness through patients’ accounts of their interactions with services	Qualitative study using grounded theory	People with moderate or severe COPD (N = 18) Age (range) = 52–78 yrs Smoking status: not reported	Slow and surreptitious onset of breathlessness, social stigma toward breathlessness, and the way breathlessness is addressed by institutions influenced the low access to services by people with COPD.	90.0%
Halding, Heggdal and Wahl,^Citation36 2011, Norway	To understand how patients with COPD experience daily life in a society with a heavy emphasis on tobacco control	Qualitative, descriptive, longitudinal study	People with COPD (N = 18) Age (range) = 52–81 yrs Smoking status: never (n = 2); former (n = 11); current (n = 5)	Because of self-blame and society’s stigmatization, study participants experienced feelings of disgrace through subtle blame and a lack of support from their social network, health care encounters, and the larger society.	73.3%
Harrison, Robertson, Apps, C. Steiner, Morgan and Singh,^Citation37 2015, United Kingdom	To explore how patients who refuse a referral to Pulmonary Rehabilitation (PR) appraise acute exacerbations of COPD	Qualitative, descriptive study	People recently hospitalized with an acute exacerbation of COPD (N = 6) Age (mean) = 75.8 yrs Smoking status: former (n = 5); current (n = 1)	Perceived personal culpability caused people with COPD to feel unworthy of dedicated care and to be sensitized to their interactions with health care professionals.	80.0%
Harrison, Robertson, Goldstein and Brooks,^Citation28 2017, Canada	To gain an understanding of the extent to which self-conscious emotions are expressed To examine any associations between self-conscious emotions and adverse health outcomes To compare self-conscious emotions in people with COPD to healthy controls	Mixed methods: sequential exploratory design	Quantitative Phase ● COPD only (n = 15) ● Age (mean) = 73 yrs ● Smoking status: former (n = 13); current (n = 2) Quantitative Phase I) COPD (n = 70) Age (mean) = 70.8 yrs Smoking status: former (n = 66); current (n = 4) ii) Healthy controls (n = 63) Age (mean) = 66.2 yrs Smoking status: never (n = 47); former (n = 11); current (n = 3)	Self-conscious emotions were associated with reduced mastery, heightened emotions, and elevated anxiety and depression (all p < 0.001). Individuals with COPD reported lower self-compassion, higher shame, and less pride than healthy controls (all p ≤ 0.01).	Qualitative phase: 70.0% Quantitative phase: 95.0%
Jonsdottir and Jonsdottir,^Citation38 2007, Iceland	To illuminate the experience of repeatedly relapsing to smoking	Qualitative, phenomenological study	Females with COPD who had relapsed to smoking three or more times (N = 7) ● Age (mean) = 55 yrs ● Smoking status: current (n = 7)	Smoking-related lung disease (ie, COPD) controls the life of study participants on a very fundamental level. Their capacity to refrain from smoking was limited and they vacillated between wanting and not wanting to stop.	66.7%
Kim, Ko and Choi,^Citation39 2020, Korea	To qualitatively explore the perceptions and experiences of disease among Korean male older adults with COPD	Qualitative, descriptive study	Male with COPD (n = 6) Age (mean) = 67.5 yrs (range 65–71 yrs) Smoking status: former (n = 4); current (n = 2)	This study discussed that social stigma (related to preconceptions about COPD regarded as pulmonary tuberculosis) and smoking-related issues (eg, smoking cessation) could inhibit study participants from adapting and managing COPD.	76.7%
Kosteli, Heneghan, Roskell, Williams, Adab, Dickens, Enocson, Fitzmaurice, Jolly and Jordan,^Citation40 2017, United Kingdom	To identify barriers and enablers of physical activity (PA) engagement for people with COPD	Qualitative, descriptive study	People with COPD (N = 26) Age (range) = 50–89 yrs Smoking status: not reported	This study discussed health related issues (fatigue, mobility problems, breathing issues), the psychological impact of the physical limitations associated with their COPD (embarrassment, fear, frustration/disappointment), attitudinal (feeling in control of their condition, PA perception, older age perception), and motivational issues as the main barriers to physical activity engagement. Motivation, attitudes, self-regulation, and performance accomplishments were identified as the main enabling factors.	76.7%
Lindgren, Storli and Wiklund-Gustin,^Citation41 2014, Sweden	To illuminate patients’ lived experiences of going through the process of being diagnosed with COPD	Qualitative, phenomenological study	People with mild to moderate COPD (N = 8) ● Age (range) = 60–74 yrs ● Smoking status: former (n = 7); current (n = 1)	The process of being diagnosed with COPD was confusing for study participants. Shame and guilt related to the diagnosis and the idea of a chronic disease interfered with the acceptance of being diagnosed with COPD.	80.0%
Lundell, Wadell, Wiklund and Tistad,^Citation42 2020, Sweden	To explore how people with COPD experience COPD-related interactions with healthcare professionals in primary care and how it influences their self-management	Qualitative study using grounded theory	People with COPD (n = 13) Age (mean) = 69 yrs (range 48–80 yrs) Smoking status: former (n = 7); current (n = 6)	Positive view of life and mutually respectful relationship of people with COPD with healthcare professionals empowered and facilitated acceptance and management of their COPD. Experiences of being deprioritized, fear, and stigma disempowered and inhibited people with COPD from seeking appropriate medical help as well as made them pass up a chance to get sufficient support from their healthcare professionals.	83.3%
Svedsater, Roberts, Patel, Macey, Hilton and Bradshaw,^Citation43 2017, United Kingdom	To understand patients’ perspectives on asthma or COPD and identify factors that can determine treatment benefits	Qualitative, descriptive study	Patient group i) Asthma (n = 39) Age (mean) = 35.5 yrs Smoking status: never (n = 26); former (n = 8); current (n = 5) ii) COPD (n = 33) Age (mean) = 60.2 yrs Smoking status: never (n = 15); former (n = 13); current (n = 5) Clinical experts (n = 4)	Individuals with asthma or COPD tended to focus on substantial quality of life limitations due to their condition, rather than symptoms per se. Improved sleep, speed of action, and length of relief were the most frequently reported factors for the ideal treatment.	76.7%

Abbreviation: COPD, chronic obstructive pulmonary disease.

Arne M, Emtner M, Janson S, Wilde-Larsson B. COPD patients’ perspectives at the time of diagnosis: a qualitative study. Prim Care Respir J. 2007;16(4):215–221. doi:10.3132/pcrj.2007.00033

 PubMedGoogle Scholar

Berger BE, Kapella MC, Larson JL. The experience of stigma in chronic obstructive pulmonary disease. West J Nurs Res. 2011;33(7):916–932. doi:10.1177/0193945910384602

 PubMed Web of Science ®Google Scholar

Bragadottir GH, Halldorsdottir BS, Ingadottir TS, Jonsdottir H. Patients and families realising their future with chronic obstructive pulmonary disease-A qualitative study. J Clin Nurs. 2018;27(1/2):57–64. doi:10.1111/jocn.13843

 PubMed Web of Science ®Google Scholar

Earnest MA. Explaining adherence to supplemental oxygen therapy. J Gen Intern Med. 2002;17(10):749–755. doi:10.1046/j.1525-1497.2002.20218.x

 PubMed Web of Science ®Google Scholar

Fusi-Schmidhauser T, Froggatt K, Preston N. Living with advanced chronic obstructive pulmonary disease: a qualitative interview study with patients and informal carers. COPD. 2020;17(4):410–418. doi:10.1080/15412555.2020.1782867

 PubMedGoogle Scholar

Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. J Pain Symptom Manage. 2008;36(5):451–460. doi:10.1016/j.jpainsymman.2007.11.008

 PubMed Web of Science ®Google Scholar

Halding AG, Heggdal K, Wahl A. Experiences of self‐blame and stigmatisation for self‐infliction among individuals living with COPD. Scand J Caring Sci. 2011;25(1):100–107. doi:10.1111/j.1471-6712.2010.00796.x

 PubMed Web of Science ®Google Scholar

Harrison SL, Robertson N, Apps LC, Steiner M, Morgan MD, Singh SJ. “We are not worthy”–understanding why patients decline pulmonary rehabilitation following an acute exacerbation of COPD. Disabil Rehabil. 2015;37(9):750–756. doi:10.3109/09638288.2014.939770

 PubMed Web of Science ®Google Scholar

Harrison SL, Robertson N, Goldstein RS, Brooks D. Exploring self-conscious emotions in individuals with chronic obstructive pulmonary disease: a mixed-methods study. Chron Respir Dis. 2017;14(1):22–32. doi:10.1177/1479972316654284

 PubMed Web of Science ®Google Scholar

Jonsdottir R, Jonsdottir H. The experience of women with advanced chronic obstructive pulmonary disease of repeatedly relapsing to smoking. Scand J Caring Sci. 2007;21(3):297–304. doi:10.1111/j.1471-6712.2007.00472.x

 PubMed Web of Science ®Google Scholar

Kim K, Ko JW, Choi S. Qualitative analysis of the disease experience of korean older men with chronic obstructive pulmonary disease. J Gerontol Nurs. 2020;46(2):49–56. doi:10.3928/00989134-20200108-02

 PubMed Web of Science ®Google Scholar

Kosteli M-C, Heneghan NR, Roskell C, et al. Barriers and enablers of physical activity engagement for patients with COPD in primary care. Int J Chron Obstruct Pulmon Dis. 2017;12:1019. doi:10.2147/COPD.S119806

 PubMed Web of Science ®Google Scholar

Lindgren S, Storli SL, Wiklund-Gustin L. Living in negotiation: patients’ experiences of being in the diagnostic process of COPD. Int J Chron Obstruct Pulmon Dis. 2014;9:441. doi:10.2147/COPD.S60182

 PubMed Web of Science ®Google Scholar

Lundell S, Wadell K, Wiklund M, Tistad M. Enhancing confidence or coping with stigma in an ambiguous interaction with primary care: a qualitative study of people with COPD. COPD. 2020;17:533–542.

 PubMedGoogle Scholar

Svedsater H, Roberts J, Patel C, Macey J, Hilton E, Bradshaw L. Life impact and treatment preferences of individuals with asthma and chronic obstructive pulmonary disease: results from Qualitative Interviews and Focus Groups. Adv Ther. 2017:1–16.

 Web of Science ®Google Scholar