Behind the label: a qualitative study of the self-perceptions of individuals with advanced lung cancer receiving immunotherapy or targeted therapy.

Abstract

Objectives: Individuals with lung cancer are living longer due to recent treatment advances such as immunotherapy and targeted therapy. The preferred label(s) of this new population are unknown. This is important as personal/advocacy benefits have been reported by using "survivor" or "thriver" by some groups; however, these same labels have been rejected by others. The goal of the present study was to explore the meaning of different labels and reasons given for preferred label(s) among people diagnosed with advanced lung cancer receiving these treatments.

Methods: The study is part of a larger project conducted in partnership with Lung Cancer Canada to identify the supportive care needs of individuals with advanced lung cancer receiving immunotherapy or targeted therapy. Participants (n = 24) were recruited across Canada. In-depth qualitative interviews were coded using reflexive thematic analysis.

Results: Labels are important and serve four functions: meaning-making, acceptance, maintaining a positive outlook, and shaping how people in participants' circle understand and react to them. Participants felt their experience did not fit traditional labels. While "survivor" was associated with maintaining a positive outlook by some, it was strongly rejected by others as it implied a cure. Some felt "patient" conveyed realism, but others found it deprived them of empowerment. "Person living with cancer" was perceived as reflecting the ongoing nature of the disease while not overly centring cancer within a person's identity.

Conclusion: Participants identified with various labels and emphasized how the label reflected their identity and psychological experiences of the disease. Thus, it is important that clinicians elicit and use individuals' preferred terms, and default to person-first language if unknown.