A blessing and a curse: Head and neck cancer survivors' experiences

Background: Head and neck cancer (HNC) survivors often exhibit late symptoms or adverse effects of treatment that may severely disrupt their ability to speak, eat, breathe, and associate with others. Research has focused on survival and quality of life associated with treatment and/or stage of cancer. Although research shows communication problems in 50% of survivors, few studies have assessed functional speech, and none describe HNC survivor perspectives on speech or communication more broadly. Objective: The purpose of this study was to describe survivors' experience of communication during and after treatment. Methods: A phenomenological, descriptive, and interpretive research method was used to study 39 HNC survivors. Interviews included open-ended questions about their communication experiences. Researchers conducted line-by-line coding, identified theme labels, and compared themes in all interviews. Procedures to ensure scientific rigor included data validation and consensus. Results: Intertwined positive/negative aspects of communication were described. Two major themes were identified: "change in communication," which included functional aspects of communication, and "going deeper into life," which included the positive aspects of the process. Conclusions: This study is the first to describe day-to-day communication experiences from the perspective of HNC survivors. The deeply personal aspects of communication included functional and existential themes far beyond the ability to speak. For these participants, deeper change came from their experience and was carried forward in their lives. Implications for Practice: Survivors benefited from support and understanding offered by family, friends, and healthcare professionals. This difficult situation served as a catalyst for deeper human change.