“You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer

Purpose: Individuals with lung cancer experience significant stigma regarding their diagnosis due to its association with smoking behaviours. To our knowledge, lung cancer sigma has yet to be explored from the perspective of family members. Family members are often the primary caregiver for individuals with lung cancer and as a result may witness firsthand stigmatising behaviours towards their loved ones. Additionally, family members may experience stigma regarding their loved one’s diagnosis due to stigma by association. Thus, the current study sought to investigate their experiences and perspectives of lung cancer stigma. Methods: Eight participants were recruited using purposive and snowball sampling. A qualitative, cross-sectional design was implemented using both virtual and in-person semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Five themes were identified: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. Conclusion: Family members perceived their loved ones to have experienced stigma related to their diagnosis through externalised and internalised stigma. Externalised stigma was perceived through stereotypical questioning, blame, judgements, discrimination and unfair treatment. Family members stated that this led to internalised feelings of guilt and shame. Importantly, family members stated they have also experienced stigma by association through external judgements from family and society and a loss of friendships. Implications for Cancer Survivors and Family Members: Interventions need to be put in place focusing on empathic communication skills for healthcare providers, communication training for family members and interventions focused on helping both survivors and family members cope with the impact of lung cancer stigma. Future research should focus on further examining the experiences and perspectives of family members in order to gain a broader understanding.