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,30 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)
|
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,31 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,32 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)
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,33 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)
|
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,34 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)
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,35 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)
|
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,36 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)
|
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,37 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)
|
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,28 2017, Canada |
|
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)
ii) Healthy controls (n = 63)
|
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). |
|
| Jonsdottir and Jonsdottir,38 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,39 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)
|
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,40 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)
|
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,41 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,42 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)
|
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,43 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)
ii) COPD (n = 33)
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.