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Table 1 Characteristics and results of qualitative studies on stigma and nihilism in lung cancer

From: A systematic review of the impact of stigma and nihilism on lung cancer outcomes

Study Design (Level of evidence) Participants Aim of interview Study factor Results
Chapple 2004a & b, UK Home interview (Level III) Lung cancer patients Lung cancer patients’ experience of lung cancer including their perceptions, how others reacted to the diagnosis and financial issues Stigma Some participants perceived lung cancer as being viewed in the broader society as a self-inflicted disease resulting from smoking and leading to a horrible death. One participant noted that the stigma applied to all lung cancer patients; smokers and non-smokers. As a result of the smoking related stigma it was thought that lung cancer research and screening was neglected.
N = 45 The press was criticised for blaming lung cancer patients in particular for their disease.
NSCLC, SCLC and mesothelioma; All stages. Medical and treatment outcomes
Recruited through general practices, nurses, oncologists, chest physicians and support groups and through study website. Smoking related stigma was thought to be a reason for lung cancer symptoms not being taken as seriously as those for other cancers leading to delays in diagnosis.
Psychosocial outcomes
Stigma was perceived to result in social isolation, and deterred support group participation (1 participant) and seeking financial relief (1 participant).
Conlon 2010, USA Interview, (Level III) Oncology social workers Social workers’ perceptions of the lung cancer experience Stigma Smoking stigma
N = 18 Lung cancer was always associated with smoking and patients often reported stigma, guilt, blame and shame. Smoking stigma was seen as a reason why support, funding and advocacy for lung cancer were lower.
Recruited from 17 cancer hospitals in 13 states with experience with approximately 25,000 lung cancer patients. Division between lung cancer patient smokers and non-smokers.
Poor prognosis stigma
Patient reported lung cancer stigmatised as being mostly fatal.
Psychosocial outcomes
Patients reported smoking stigma sometimes resulted in reluctance to tell others that they have lung cancer.
Psychosocial outcomes
Poor prognosis stigma potentially led to difficulties attending support groups.
Corner 2005 & 2006, UK Semi-structured interviews with a time-line prompt mostly in home and often with a relative present (Level III) Patients recently (<3 months) diagnosed with lung cancer To explore delays in lung cancer diagnosis Stigma Medical and treatment outcomes
All experienced symptoms for 4 months or more prior to visiting doctor Factors potentially leading to delay in seeking medical treatment included expectation and fear that smokers would be denied treatment (reported by 1 participant who was a smoker)
N = 22; 12 men, 10 women
Median age = 68 years
15/22 inoperable disease
1/22 never smoker
Recruited from 2 hospital outpatient clinics.
Leydon 2003, UK Telephone and face-to-face semi-structured interviews (Level IV) Cancer patients diagnosed < 2 years ago with a focus on those of lower SES Perceptions of cancer diagnostic process Lung cancer specific fear Medical and treatment outcomes
N = 17; 5 men, 12 women Lung cancer viewed as fatal (by 1 participant). This theme was reported as arising in the context of potential barriers to seeing a doctor
Included 2 lung cancer patients; a 67 year old male and a 59 year old female.
Recruited through cancer support community organisations.
Sharf 2005 USA, Texas Interview with guiding questions (Level III) Patients with NSCLC or a suspicious pulmonary mass who refused or did not follow-up for physician-recommended treatment (N = 7) or invasive investigation (N = 2). Reasons for declining physician-recommended treatment or follow–up options Nihilism Medical and treatment outcomes
100% male, 89% white Reasons reported included the view that lung cancer treatments were futile (5 participants).
Identified at multidisciplinary pulmonary conferences and review of pathology reports at a university affiliated Veterans Affairs hospital.
9/31 eligible patients interviewed
2 with history of depression
Tod 2008, UK Semi-structured home interviews with partner or a friend participating at the request of 12 participants (Level III) Lung cancer patients Factors influencing delay in reporting symptoms (patient delay) Stigma Medical and treatment outcomes
N = 20; 12 men, 8 women. Nihilism Factors identified that might result in patient delay in consulting a doctor about their symptoms included the stigma that it was caused by smoking and fear.
18 diagnosed in past 6 months
3 non smokers; 9 previous smokers.
Recruited from deprived health district by a respiratory physician and lung cancer nurse specialists.
Tod 2010 UK 3 focus groups, (Level III) Focus group 1; 6 community pharmacists (50% female) Factors influencing delay in reporting symptoms (patient delay) Stigma Medical and treatment outcomes
Focus group 2: 6 clinical nurse specialists (100% female) Factors identified that might result in lung cancer patient delay in consulting a doctor about their symptoms included fear of negative evaluation and expectation of denial of treatment especially for smokers.
Focus group 3: 2 practice nurses (100% female)
Recruited an area with high levels of lung cancer and smoking and a history of heavy industry
  1. NSCLC = Non small cell lung cancer; SCLC = Small cell lung cancer.