Head and Neck Cancer Survivors’ Experiences with Chronic Nutrition Impact Symptom Burden after Radiation: A Qualitative Study



      Head and neck cancer (HNC) survivors may face an array of nutrition impact symptoms (NIS), including dysphagia, xerostomia, taste alterations, and difficulty chewing, which occur as a result of tumor location and treatment with radiation. Few qualitative studies have assessed the chronic impact of NIS on everyday life.


      The aim of this study was to obtain a comprehensive understanding of the lived experience of chronic NIS burden on HNC survivors.

      Design and participants

      Semi-structured, face-to-face interviews were conducted with 31 HNC survivors to address the research aims and objectives. An interview guide was utilized to consider themes that had been generated through the review of literature and through the researchers’ clinical experience within the field. There were probes within the interview for participants to raise unanticipated issues and flexibility to follow such leads. Interviews were conducted between March 2018 and May 2019.


      A single researcher conducted the interviews to maintain consistency in data collection. Interviews lasted approximately 1 hour and were audio-recorded. All interview transcripts were professionally transcribed verbatim and checked for accuracy to ensure a complete account of participants’ responses. Two researchers applied qualitative thematic content analysis to identify major themes.


      The following 4 major thematic categories emerged from the interview data: symptom presence, dietary preferences, eating adjustments, and addressing symptoms. The most common symptoms were dysphagia, xerostomia, taste alterations, and bothered chewing. As a result of dietary preferences, survivors avoided citrus fruits, dry foods, raw vegetables, sweets, and meats. Survivors preferred soft and moist foods, spices or seasonings, and sauces or gravies. Eating adjustments were described as increased time to consume meals, cutting food into smaller pieces, consuming less food, and consuming more fluid. As a result of food preference changes and eating adjustments, survivors reported dietary pattern changes from pre to post treatment. All survivors experienced 1 or more chronic NIS, yet nearly 40% were unaware before treatment that NIS had the potential to persist chronically.


      The results of this study provide unique qualitative insight into the lived experience of chronic NIS burden on HNC survivors. By recognizing the daily challenges, health care team members can better support HNC survivors in the transition from active treatment to follow-up care.


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      S. L. Crowder is a doctoral candidate, Department of Food Science and Human Nutrition, University of Illinois at Urbana-Champaign.


      N. Najam is an undergraduate research assistant, Department of Food Science and Human Nutrition, University of Illinois at Urbana-Champaign.


      A. E. Arthur is an assistant professor, Department of Food Science and Human Nutrition, University of Illinois at Urbana-Champaign.


      B. H. Fiese is director of the Family Resiliency Center, and a professor, Department of Human Development and Family Studies, University of Illinois at Urbana-Champaign.


      K. P. Sarma is a radiation oncologist, Carle Cancer Center, Carle Foundation Hospital, Urbana, IL.