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Original Article

How do Lung Cancer Patients Experience Stigma?: A Meta-synthesis of Qualitative Studies

Ji Yeon Jeong1, Gyeonghui Jeong2, Hyang Sook So3
Korean Journal of Adult Nursing 2016;28(1):116-126.
Published online: February 29, 2016

1Chonnam National University Hospital, Gwangju

2Dream CIS, Seoul

3College of Nursing, Chonnam National University, Gwangju, Korea

Corresponding author: Jeong, Gyeonghui Dream CIS, 130 Sajik-ro, Jongno-gu, Seoul 03170, Korea. Tel: +82-2-2010-4493, Fax: +82-2-2010-4593, E-mail: gyeonghui.jeong@gmail.com
• Received: January 10, 2016   • Accepted: February 13, 2016

Copyright © 2016 Korean Society of Adult Nursing

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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  • Purpose
    Lung cancer patients are often stigmatized since lung cancer is closely associated with smoking, which is a self-administered life style. The stigma of lung cancer has been examined in some qualitative studies; however, their findings were diverse and not yet synthesized. Therefore, this meta-synthesis study aimed to explore how lung cancer patients experience stigma.
  • Methods
    A meta-synthesis method, as suggested by Sandelowski and Barroso in 2007, was applied by aggregating the findings after an evaluation according to consolidated criteria for reporting qualitative research (COREQ).
  • Results
    By synthesizing the findings of the selected seven papers, a synthesized theme was emerged as “experiencing external and internal distances, which mandates authentic and consistent supports.” The four sub-themes included ‘experiencing some distance from the surrounded world,’ ‘experiencing self-made distance between the disease and oneself,’ ‘the disease experience causes social isolation and loneliness,’ and ‘there is lack of supportive care for myself.’
  • Conclusion
    Health care providers should be more attentive to supporting lung cancer patients by providing more effective advocacy programs that improve patients’ quality of life.
  • Key Words: Lung cancer; Stigma; Qualitative study; Meta-synthesis
Figure 1.
Flowchart of the search process.
kjan-28-116f1.jpg
Table 1.
Searching Terms AND “Stigma” (MeSH)
“Lung cancer” (MeSH)    
OR    
Lung cancer    
OR    
Pulmonary cancer   “Stigma”: (MeSH)
OR   OR
Lung tumo?r AND Stigma∗
OR    
Pulmonary tumo?r    
OR    
Lung carcinoma    
OR    
Pulmonary carcinoma    
Table 2.
Summary of the Included Studies
Author (year) Title Nation Method Analysis method Participants Findings
Brown & Cataldo (2013) Explorations of lung cancer stigma for female long-term survivors USA One-on-one and group interview Gee's discourse analysis methodology, Fairclough's critical discourse theory, integrates thematic analysis, linguistic analysis, discourse analysis and critical discourse analysis N=8 Unvoiced precursors-tobacco industry and addiction influence
․ Perception of LCS-diagnosis and interaction with healthcare providers
․ Perception of stigma-shifting entities
․ Responses to stigma-information control, advocacy
․ Conflicting responses to stigma-simultaneous rejection and assumption of stigma
Chapple et al (2004) Stigma, shame, and blame experienced by patients with lung cancer qualitative study United Kingdom Narrative interview Not mentioned N=45 ․ Patient's experience and fear of stigma
․ Resistance to blame and stigmatization
․ Fear about lack of access to medical care
Hamann et al (2014) Stigma among patients with lung cancer: A patient-reported measurement model USA Semi-structured interviews and focus groups d Thematic analysis ․ Interview group (n=42) ․ Perceived/felt stigma
․ Internalized stigma: self-blame, guilt, shame, anger, regret
․ Five focus groups (n=23) ․ Consequences
Lehto (2014) Patient views on smoking, lung cancer, and stigma: A focus group perspective USA A focus group Thematic analysis ․ Four focus groups (n=11) ․ Societal attitudes
․ Institutional practices and experiences
․ Negative thoughts and emotions
․ Actual stigmatization experiences
․ Smoking cessation: personal choice versus addiction
․ Causal attributions
Rowland et al (2014) Quality of life, support and smoking in advanced lung cancer patients: a qualitative study United Kingdom Semi-structured interviews Interpretative phenomenological analysis N=9 ․ Effects of illness on quality of life ․ Family support ․ Coping strategies ․ Medical support ․ Smoking
 
Scott et al (2015) Stigma as a barrier to diagnosis of lung cancer: patient and general practitioner perspectives Australia Semi-structured in-depth interview Thematic analysis N=20 ․ Experience of blame and stigma
․ Patient (n=10), GP (n=10) ․ GPs preconceptions of lung cancer risk
․ Anti-smoking messaging
Tod et al (2008) Diagnostic delay in lung cancer United Kingdom Semi-structured individual interviews Framework analysis N=20 ․ Symptom experience
․ Knowledge
․ Fear
․ Blame and stigma
․ Culture
Table 3.
Quality Appraisal Tool (COREQ)
Item a1 a2 a3 a4 a5 a6 a7
Domain 1: Research team and reflexivity
1. Interviewer/Facilitator Which author/s conducted the interview or focus group? nc ✓ nc ✓ nc nc ✓
2. Credentials What were the researcher's credentials? ✓ ✓ nc ✓ ✓ X ✓
3. Occupations What was their occupation at the time of the study? ✓ ✓ ✓ ✓ nc ✓ ✓
4. Gender Was the researcher male or female? nc nc nc nc nc nc nc
5. Experience and training What experience or training did the researcher have? nc nc ✓ ✓ X nc X
6. Relationship established Was a relationship established prior to study commencement? X X ✓ ✓ X X X
7. Participant knowledge of interviewer What did the participants know about the researcher? X X ✓ ✓ X X X
8. Interviewer characteristics What characteristics were reported about the interviewer/facilitator? X ✓ ✓ ✓ X nc X
Domain 2: Study design
9. Methodological orientation and Theory What methodological orientation was stated to underpin the study? ✓ X ✓ v ✓ ✓ ✓
10. Sampling How were participants selected? ✓ ✓ ✓ ✓ ✓ ✓ ✓
11. Method of approach How were participants approached? ✓ ✓ ✓ ✓ ✓ ✓ ✓
12. Sample size How many participants were in study? ✓ ✓ ✓ ✓ ✓ ✓ ✓
13. Non-participation How many people refused to participate or dropped out? Reasons? X X ✓ ✓ ✓ X X
14. Setting of data collection Where was the data collected? nc ✓ ✓ ✓ ✓ X ✓
15. Presence of non-participants Was anyone else present besides the participants and researchers? X X ✓ X X X ✓
16. Description of sample What are the important characteristics of the sample? ✓ ✓ ✓ ✓ ✓ nc ✓
17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot tested? ✓ X ✓ X ✓ X X
18. Repeat Interviews Were repeat interviews carried out? If yes, how many? X X X X X X X
19. Audio/visual recording Did the research use audio or visual recording to collect the data? ✓ ✓ ✓ ✓ ✓ ✓ ✓
20. Field notes Were field notes made during and/or after the interview or focus group? X X X X X X ✓
21. Duration What was the duration of the interviews or focus group? ✓ ✓ X nc ✓ X ✓
22. Data saturation Was data saturation discussed? X ✓ ✓ X ✓ X X
23. Transcripts returned Were transcripts returned to participants for comment and/or correction? X ✓ X X X X X
Domain 3: Analysis and findings
24. Number of data coders How many data coders coded the data? X ✓ ✓ ✓ ✓ X ✓
25. Description of the coding tree Did authors provide a description of the coding tree? X X nc X ✓ X X
26. Derivation of themes Were themes identified in advance or derived from the data? ✓ ✓ ✓ ✓ ✓ ✓ ✓
27. Software What software, if applicable, was used to manage the data? X ✓ ✓ X X ✓ ✓
28. Participant checking Did participants provide feedback on the findings? X X ✓ X X X X
29. Quotations presented Were participant quotations presented to illustrate the themes/findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
30. Data and findings consistent Was there consistency between the data presented and the findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
31. Clarity of major themes Were major themes clearly presented in the findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
32. Clarity of minor themes Is there a description of diverse cases or discussion of minor themes? nc nc ✓ ✓ ✓ nc nc

Key: ✓=Information was provided and described; X=Information was not provided; nc=Information was not clear or sufficient.

Table 4.
Meta-aggregation Process
Findings (Extraction) ➡ Categories (Categorization) ➡ Sub-themes (Categorization) ➡ Synthesis (Synthesization)
53 findings from 7 papers Perceived stigma by public Perceived stigma by family and friends Perceived stigma by health care providers Experiencing some distance from the surrounded world Experiencing external and internal distances, which mandates authentic and consistent supports
Blame, guilt, shame, and frustration Regret, anger, and fear Shifting of identities Social isolation and loneliness Experiencing self-made distance between the disease and oneself The disease experience causes social isolation and loneliness
Lack of supportive care There is lack of supportive care for myself
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  • 8.American Cancer Society. Cancer Facts & Figures 2012. Atlanta GA: American Cancer Society; 2012. [cited 2015 December 18]. Available from:.http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf.
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  • 11.Gonzalez BD, Jacobsen PB. Depression in lung cancer patients: the role of perceived stigma. Psycho-Oncology. 2012;21(3):239-46. http://dx.doi.org/10.1002/pon.1882.
  • 12.Conlon A, Gilbert D, Jones B, Aldredge P. Stacked stigma: oncology social workers' perceptions of the lung cancer experience. Journal of Psychosocial Oncology. 2010;28(1):98-115. http://dx.doi.org/10.1080/07347330903438982.
  • 13.Lee JL, Kim KS. The Relationships between stigma, distress, and quality of life in patients with lung cancer. Asian Oncology Nursing. 2011;11(3):237-46. http://dx.doi.org/10.5388/jkon.2011.11.3.237.
  • 14.Byun HS, Kim EK, Kim GD. Impacts of stigma and distress on the quality of Life in patients with lung cancer. Journal of safety and crisis management. 2015;11(8):223-40.
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  • 16.Kim MA, Yi J. Life after cancer: How does public stigma increase psychological distress of childhood cancer survivors? International journal of nursing studies. 2014;51(12):1605-14. http://dx.doi.org/10.1016/j.ijnurstu.2014.04.005.
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  • 24.LeBel TP. Perceptions of and responses to stigma. Sociology Compass. 2008;2(2):409-32. http://dx.doi.org/10.1111/j.1751-9020.2007.00081.x.
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    Citations

    Citations to this article as recorded by  
    • Stigma in Early-Stage Lung Cancer
      Sarah Bédard, Hannah Sasewich, Jessica Culling, Simon R Turner, Janelle Pellizzari, Scott Johnson, Eric L R Bédard
      Annals of Behavioral Medicine.2022; 56(12): 1272.     CrossRef
    • Social isolation in adults with cancer: An evolutionary concept analysis
      Yanjing Liang, Guihua Hao, Mei Wu, Lili Hou
      Frontiers in Psychology.2022;[Epub]     CrossRef

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    How do Lung Cancer Patients Experience Stigma?: A Meta-synthesis of Qualitative Studies
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    DOI: https://doi.org/10.7475/kjan.2016.28.1.116
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    How do Lung Cancer Patients Experience Stigma?: A Meta-synthesis of Qualitative Studies
    Korean J Adult Nurs. 2016;28(1):116-126.   Published online February 29, 2016
    DOI: https://doi.org/10.7475/kjan.2016.28.1.116
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    How do Lung Cancer Patients Experience Stigma?: A Meta-synthesis of Qualitative Studies
    Image
    Figure 1. Flowchart of the search process.

    Figure 1.

    How do Lung Cancer Patients Experience Stigma?: A Meta-synthesis of Qualitative Studies

    Searching Terms AND “Stigma” (MeSH)

    “Lung cancer” (MeSH)    
    OR    
    Lung cancer    
    OR    
    Pulmonary cancer   “Stigma”: (MeSH)
    OR   OR
    Lung tumo?r AND Stigma∗
    OR    
    Pulmonary tumo?r    
    OR    
    Lung carcinoma    
    OR    
    Pulmonary carcinoma    

    Summary of the Included Studies

    Author (year) Title Nation Method Analysis method Participants Findings
    Brown & Cataldo (2013) Explorations of lung cancer stigma for female long-term survivors USA One-on-one and group interview Gee's discourse analysis methodology, Fairclough's critical discourse theory, integrates thematic analysis, linguistic analysis, discourse analysis and critical discourse analysis N=8 Unvoiced precursors-tobacco industry and addiction influence
    ․ Perception of LCS-diagnosis and interaction with healthcare providers
    ․ Perception of stigma-shifting entities
    ․ Responses to stigma-information control, advocacy
    ․ Conflicting responses to stigma-simultaneous rejection and assumption of stigma
    Chapple et al (2004) Stigma, shame, and blame experienced by patients with lung cancer qualitative study United Kingdom Narrative interview Not mentioned N=45 ․ Patient's experience and fear of stigma
    ․ Resistance to blame and stigmatization
    ․ Fear about lack of access to medical care
    Hamann et al (2014) Stigma among patients with lung cancer: A patient-reported measurement model USA Semi-structured interviews and focus groups d Thematic analysis ․ Interview group (n=42) ․ Perceived/felt stigma
    ․ Internalized stigma: self-blame, guilt, shame, anger, regret
    ․ Five focus groups (n=23) ․ Consequences
    Lehto (2014) Patient views on smoking, lung cancer, and stigma: A focus group perspective USA A focus group Thematic analysis ․ Four focus groups (n=11) ․ Societal attitudes
    ․ Institutional practices and experiences
    ․ Negative thoughts and emotions
    ․ Actual stigmatization experiences
    ․ Smoking cessation: personal choice versus addiction
    ․ Causal attributions
    Rowland et al (2014) Quality of life, support and smoking in advanced lung cancer patients: a qualitative study United Kingdom Semi-structured interviews Interpretative phenomenological analysis N=9 ․ Effects of illness on quality of life ․ Family support ․ Coping strategies ․ Medical support ․ Smoking
     
    Scott et al (2015) Stigma as a barrier to diagnosis of lung cancer: patient and general practitioner perspectives Australia Semi-structured in-depth interview Thematic analysis N=20 ․ Experience of blame and stigma
    ․ Patient (n=10), GP (n=10) ․ GPs preconceptions of lung cancer risk
    ․ Anti-smoking messaging
    Tod et al (2008) Diagnostic delay in lung cancer United Kingdom Semi-structured individual interviews Framework analysis N=20 ․ Symptom experience
    ․ Knowledge
    ․ Fear
    ․ Blame and stigma
    ․ Culture

    Quality Appraisal Tool (COREQ)

    Item a1 a2 a3 a4 a5 a6 a7
    Domain 1: Research team and reflexivity
    1. Interviewer/Facilitator Which author/s conducted the interview or focus group? nc ✓ nc ✓ nc nc ✓
    2. Credentials What were the researcher's credentials? ✓ ✓ nc ✓ ✓ X ✓
    3. Occupations What was their occupation at the time of the study? ✓ ✓ ✓ ✓ nc ✓ ✓
    4. Gender Was the researcher male or female? nc nc nc nc nc nc nc
    5. Experience and training What experience or training did the researcher have? nc nc ✓ ✓ X nc X
    6. Relationship established Was a relationship established prior to study commencement? X X ✓ ✓ X X X
    7. Participant knowledge of interviewer What did the participants know about the researcher? X X ✓ ✓ X X X
    8. Interviewer characteristics What characteristics were reported about the interviewer/facilitator? X ✓ ✓ ✓ X nc X
    Domain 2: Study design
    9. Methodological orientation and Theory What methodological orientation was stated to underpin the study? ✓ X ✓ v ✓ ✓ ✓
    10. Sampling How were participants selected? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    11. Method of approach How were participants approached? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    12. Sample size How many participants were in study? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    13. Non-participation How many people refused to participate or dropped out? Reasons? X X ✓ ✓ ✓ X X
    14. Setting of data collection Where was the data collected? nc ✓ ✓ ✓ ✓ X ✓
    15. Presence of non-participants Was anyone else present besides the participants and researchers? X X ✓ X X X ✓
    16. Description of sample What are the important characteristics of the sample? ✓ ✓ ✓ ✓ ✓ nc ✓
    17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot tested? ✓ X ✓ X ✓ X X
    18. Repeat Interviews Were repeat interviews carried out? If yes, how many? X X X X X X X
    19. Audio/visual recording Did the research use audio or visual recording to collect the data? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    20. Field notes Were field notes made during and/or after the interview or focus group? X X X X X X ✓
    21. Duration What was the duration of the interviews or focus group? ✓ ✓ X nc ✓ X ✓
    22. Data saturation Was data saturation discussed? X ✓ ✓ X ✓ X X
    23. Transcripts returned Were transcripts returned to participants for comment and/or correction? X ✓ X X X X X
    Domain 3: Analysis and findings
    24. Number of data coders How many data coders coded the data? X ✓ ✓ ✓ ✓ X ✓
    25. Description of the coding tree Did authors provide a description of the coding tree? X X nc X ✓ X X
    26. Derivation of themes Were themes identified in advance or derived from the data? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    27. Software What software, if applicable, was used to manage the data? X ✓ ✓ X X ✓ ✓
    28. Participant checking Did participants provide feedback on the findings? X X ✓ X X X X
    29. Quotations presented Were participant quotations presented to illustrate the themes/findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    30. Data and findings consistent Was there consistency between the data presented and the findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    31. Clarity of major themes Were major themes clearly presented in the findings? ✓ ✓ ✓ ✓ ✓ ✓ ✓
    32. Clarity of minor themes Is there a description of diverse cases or discussion of minor themes? nc nc ✓ ✓ ✓ nc nc

    Key: ✓=Information was provided and described; X=Information was not provided; nc=Information was not clear or sufficient.

    Meta-aggregation Process

    Findings (Extraction) ➡ Categories (Categorization) ➡ Sub-themes (Categorization) ➡ Synthesis (Synthesization)
    53 findings from 7 papers Perceived stigma by public Perceived stigma by family and friends Perceived stigma by health care providers Experiencing some distance from the surrounded world Experiencing external and internal distances, which mandates authentic and consistent supports
    Blame, guilt, shame, and frustration Regret, anger, and fear Shifting of identities Social isolation and loneliness Experiencing self-made distance between the disease and oneself The disease experience causes social isolation and loneliness
    Lack of supportive care There is lack of supportive care for myself
    Table 1. Searching Terms AND “Stigma” (MeSH)

    Table 2. Summary of the Included Studies

    Table 3. Quality Appraisal Tool (COREQ)

    Key: ✓=Information was provided and described; X=Information was not provided; nc=Information was not clear or sufficient.

    Table 4. Meta-aggregation Process

    Table 1.

    Table 2.

    Table 3.

    Table 4.

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