Stigma among patients with lung cancer

A patient-reported measurement model

Heidi A. Hamann, Jamie S. Ostroff, Emily G. Marks, David E. Gerber, Joan H. Schiller, Simon J Craddock Lee

Research output: Contribution to journalArticle

47 Citations (Scopus)

Abstract

Background Although stigma may have negative psychosocial and behavioral outcomes for patients with lung cancer, its measurement has been limited. A conceptual model of lung cancer stigma and a patient-reported outcome measure are needed to mitigate these sequelae. This study identified key stigma-related themes to provide a blueprint for item development through a thematic analysis of semi-structured interviews and focus groups with lung cancer patients. Methods Participants were recruited from two outpatient oncology clinics and included (i) 42 lung cancer patients who participated in individual interviews and (ii) 5 focus groups (inclusive of 23 new lung cancer patients). Never smokers, long-term quitters, recent quitters, and current smokers participated. Individual interviews facilitated theme development and a conceptual model of lung cancer stigma, whereas subsequent focus groups provided feedback on the conceptual model. Qualitative data analyses included iterative coding and validation with existing theory. Results Two main thematic elements emerged from interviews with lung cancer patients: perceived (felt) stigma and internalized (self) stigma. Discussions of perceived stigma were pervasive, whereas those of internalized stigma were more commonly endorsed among current and recently quit smokers. Participants also discussed maladaptive (e.g., decreased disclosure) and adaptive (e.g., increased advocacy) stigma-related consequences. Conclusions Results indicate widespread acknowledgment of perceived stigma among lung cancer patients but varying degrees of internalized stigma and associated consequences. Next steps for patient-reported outcome measure development are item consolidation, item development, expert input, and cognitive interviews before field testing and psychometric analysis. Future work should address stigma-related consequences and interventions for reducing lung cancer stigma.

Original languageEnglish (US)
Pages (from-to)81-92
Number of pages12
JournalPsycho-Oncology
Volume23
Issue number1
DOIs
StatePublished - Jan 2014

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Lung Neoplasms
Interviews
Focus Groups
Disclosure
Ambulatory Care Facilities
Psychometrics

Keywords

  • cancer
  • lung cancer
  • oncology
  • patient-reported outcomes
  • stigma

ASJC Scopus subject areas

  • Oncology
  • Psychiatry and Mental health
  • Experimental and Cognitive Psychology

Cite this

Stigma among patients with lung cancer : A patient-reported measurement model. / Hamann, Heidi A.; Ostroff, Jamie S.; Marks, Emily G.; Gerber, David E.; Schiller, Joan H.; Lee, Simon J Craddock.

In: Psycho-Oncology, Vol. 23, No. 1, 01.2014, p. 81-92.

Research output: Contribution to journalArticle

Hamann, Heidi A. ; Ostroff, Jamie S. ; Marks, Emily G. ; Gerber, David E. ; Schiller, Joan H. ; Lee, Simon J Craddock. / Stigma among patients with lung cancer : A patient-reported measurement model. In: Psycho-Oncology. 2014 ; Vol. 23, No. 1. pp. 81-92.
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abstract = "Background Although stigma may have negative psychosocial and behavioral outcomes for patients with lung cancer, its measurement has been limited. A conceptual model of lung cancer stigma and a patient-reported outcome measure are needed to mitigate these sequelae. This study identified key stigma-related themes to provide a blueprint for item development through a thematic analysis of semi-structured interviews and focus groups with lung cancer patients. Methods Participants were recruited from two outpatient oncology clinics and included (i) 42 lung cancer patients who participated in individual interviews and (ii) 5 focus groups (inclusive of 23 new lung cancer patients). Never smokers, long-term quitters, recent quitters, and current smokers participated. Individual interviews facilitated theme development and a conceptual model of lung cancer stigma, whereas subsequent focus groups provided feedback on the conceptual model. Qualitative data analyses included iterative coding and validation with existing theory. Results Two main thematic elements emerged from interviews with lung cancer patients: perceived (felt) stigma and internalized (self) stigma. Discussions of perceived stigma were pervasive, whereas those of internalized stigma were more commonly endorsed among current and recently quit smokers. Participants also discussed maladaptive (e.g., decreased disclosure) and adaptive (e.g., increased advocacy) stigma-related consequences. Conclusions Results indicate widespread acknowledgment of perceived stigma among lung cancer patients but varying degrees of internalized stigma and associated consequences. Next steps for patient-reported outcome measure development are item consolidation, item development, expert input, and cognitive interviews before field testing and psychometric analysis. Future work should address stigma-related consequences and interventions for reducing lung cancer stigma.",
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