Understanding cognitive and emotional illness representations of South Asian head and neck cancer survivors: a qualitative study

Objectives: Head and neck cancer (HNC) constitutes a substantial portion of the cancer burden worldwide, with over 550,000 new cases and over 300,000 deaths annually, with disproportionately high mortality rates in the developing countries. The large majority of HNCs are caused by tobacco use, and synergistic effects of tobacco and alcohol use. Using the Common-Sense Model (CSM) as a framework, this qualitative study sought to understand South Asian HNC survivors' cognitive and emotional representations of their cancer; and to assess if these representations differ by smokeless tobacco (SLT) vs. smoked tobacco use.

Design: In-depth semi-structured interviews, conducted with South Asian HNC survivors (N = 15, 80% participants were immigrants, while 20% came to the United States for treatment) to identify key themes and issues related to HNC experience and SLT vs. smoked tobacco use.

Results: The results of the study provide a deeper understanding of South Asian HNC survivor experiences with receiving a HNC diagnosis, delays in seeking treatment and related medical care, disagreement regarding smoked tobacco/SLT history as potential causes of cancer, strategies to cure the cancer or prevent recurrence, enduring physical and psycho-social consequences of treatment, and emotional impact of the cancer experience. Three key implications emerged: (a) the utility of narratives as a method of eliciting HNC survivor experience to understand patient experiences and concerns; (b) the potential for public health practitioners to harness patients' voices and the power of storytelling for developing campaigns about public awareness of SLT use, providing information and support to SLT users, and encouraging SLT quitting resources; and (c) the importance of providing clear, personalized and culturally sensitive education regarding the risks of SLT use.

Conclusions: This study underscores the significance of offering tailored tobacco cessation services to South Asian HNC survivors, and to help inform supportive models of care for others.