Stefano Occhipinti1, Jeff Dunn2, Dianne L O'Connell3, Gail Garvey4, Patricia C Valery5, David Ball6, Kwun M Fong7, Shalini Vinod8, Suzanne Chambers9. 1. Menzies Health Institute Queensland, Griffith University, Queensland, Australia. 2. Menzies Health Institute Queensland, Griffith University, Queensland, Australia; Institute for Resilient Regions, University of Southern Queensland, Queensland, Australia; Cancer Council Queensland, Queensland, Australia; School of Social Science, The University of Queensland, Queensland, Australia. 3. Cancer Research Division, Cancer Council New South Wales, New South Wales, Australia; School of Public Health, University of Sydney, New South Wales, Australia; School of Medicine and Public Health, University of Newcastle, New South Wales, Australia. 4. Menzies School of Health Research, Charles Darwin University, Queensland, Australia. 5. QIMR Berghofer Medical Research Institute, Queensland, Australia. 6. Division of Radiation Oncology, Peter MacCallum Cancer Centre, Victoria, Australia; Sir Peter MacCallum Department of Oncology, The University of Melbourne, Victoria, Australia. 7. Thoracic Research Centre, The University of Queensland, Queensland, Australia; The Prince Charles Hospital, Queensland, Australia. 8. South Western Sydney Clinical School, University of New South Wales, New South Wales, Australia. 9. Menzies Health Institute Queensland, Griffith University, Queensland, Australia; Institute for Resilient Regions, University of Southern Queensland, Queensland, Australia; Cancer Council Queensland, Queensland, Australia; Faculty of Health, University of Technology Sydney, New South Wales, Australia. Electronic address: suzanne.chambers@griffith.edu.au.
Abstract
OBJECTIVE: To examine the personal experiences of people with lung cancer and their caregivers and how stigma is manifested throughout a patient's social network. METHODS: A qualitative thematic analysis of interviews with 28 patients with lung cancer and their caregivers was conducted. Telephone interviews were conducted and transcribed verbatim. Data analysis was guided by contemporary stigma theory. RESULTS: Patients and caregivers reported feeling high levels of felt stigma and concomitant psychological distress in response to the diagnosis of lung cancer. Three overarching themes emerged: the nexus of lung cancer and smoking, moralization, and attacking the link between lung cancer and smoking. Stigma was inevitably linked to smoking, and this formed the hub around which the other themes were organized. Caregivers reported feeling invisible and noted a lack of support systems for families and caregivers. In addition, there was evidence that caregivers experienced stigma by association as members of the patients' close networks. Both groups responded ambivalently to stigmatizing antismoking advertisements. CONCLUSIONS: The qualitative analysis demonstrated the complex interplay of the social and personal domains in the experience and outcomes of stigma in lung cancer. There is a significant potential for caregivers of patients with lung cancer to experience exacerbations of psychosocial distress as a consequence of widely shared negative views about lung cancer and its prognosis. It remains for researchers and practitioners to incorporate such complexity in addressing stigma and psychosocial distress in both patients and caregivers.
OBJECTIVE: To examine the personal experiences of people with lung cancer and their caregivers and how stigma is manifested throughout a patient's social network. METHODS: A qualitative thematic analysis of interviews with 28 patients with lung cancer and their caregivers was conducted. Telephone interviews were conducted and transcribed verbatim. Data analysis was guided by contemporary stigma theory. RESULTS:Patients and caregivers reported feeling high levels of felt stigma and concomitant psychological distress in response to the diagnosis of lung cancer. Three overarching themes emerged: the nexus of lung cancer and smoking, moralization, and attacking the link between lung cancer and smoking. Stigma was inevitably linked to smoking, and this formed the hub around which the other themes were organized. Caregivers reported feeling invisible and noted a lack of support systems for families and caregivers. In addition, there was evidence that caregivers experienced stigma by association as members of the patients' close networks. Both groups responded ambivalently to stigmatizing antismoking advertisements. CONCLUSIONS: The qualitative analysis demonstrated the complex interplay of the social and personal domains in the experience and outcomes of stigma in lung cancer. There is a significant potential for caregivers of patients with lung cancer to experience exacerbations of psychosocial distress as a consequence of widely shared negative views about lung cancer and its prognosis. It remains for researchers and practitioners to incorporate such complexity in addressing stigma and psychosocial distress in both patients and caregivers.
Authors: Chandylen L Nightingale; Laurie E Steffen; Janet A Tooze; William Petty; Suzanne C Danhauer; Hoda Badr; Kathryn E Weaver Journal: Glob Adv Health Med Date: 2019-07-17