Purpose: The purpose of this qualitative study was to better understand the lived experience of head and neck cancer (HNC) survivors between 6 months to 9 years post-radiation. Quality of life, coping strategies, concerns for the future, and preferences for supportive care were explored.
Methods: Semi-structured interviews were conducted in 31 HNC survivors from a Midwestern hospital. Interviews were recorded, transcribed verbatim and analyzed using qualitative thematic analysis.
Results: Survivors described restrictions on daily living, social eating, and financial concerns. Despite these restrictions, survivors reported an overall high mentality and enjoyment of life. Coping considerations included adapting to a new normal and increased involvement in cancer support and faith groups. Preferences for supportive care included receiving more information about and being more involved in the treatment care plan, referrals to therapy and support groups, and more comprehensive follow-up in survivorship.
Conclusions: While long-term HNC survivors adapt to daily living restrictions, a high proportion continue to have unmet needs. This data can guide the development of HNC survivorship interventions to inform optimal clinical guidelines based on patients' perceived needs. This qualitative study uncovered distinct perceived needs of HNC survivors which can inform future service development. Incorporating referrals to supportive care services including speech language pathologist, physical therapists, and dietitians into the standard of care before, during, and after treatment would assist survivors in adapting to life after treatment and managing long-term health consequences of their disease.
Keywords: Diet; Eating problems; Information; Survivorship; Symptoms; Unmet needs.