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

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