SIGNIFICANCE: Head and neck cancers (HNCs) present numerous threats to occupational performance, function, overall quality of life, health, and well-being. The high-stakes nature of HNCs allies them to intervention from occupational therapy. Despite the rich opportunity for occupational therapy within the HNC population, very little research and evidence are available to support and guide the work of occupational therapy with HNC patients. Findings from this study can be used to increase awareness of patient fears, worries, and opportunities for effective occupational therapy within this underserved population. Recognizing and meeting the needs of this population through occupational therapy will improve quality of life, patient satisfaction, and patient outcomes. In this study, we sought to examine what fears and worries patients had about their diagnosis, its treatment, and life after cancer.

METHOD: We used a qualitative design with in-depth interviews. Participants (N = 41) completed two in-depth interviews: one within 2 wk of the initial HNC diagnosis and the second after completing or terminating treatment. We recruited patients from the ear, nose, and throat clinic of a major teaching hospital in Lexington, Kentucky, using purposive sampling. Interviews were conducted by the principal investigator. Interviews took place in a quiet and private interview room on the hospital campus.

Patients were given information about the study by clinic staff or the primary investigator. Patients could also access recruitment information from the clinic waiting area, examination rooms, or the hospital research recruitment information board. Written informed consent was obtained after interested participants were screened for eligibility. Patients were eligible to participate in the study if they (1) had received a primary, recent diagnosis of a squamous cell carcinoma of the head and neck; (2) could speak English; (3) were deemed cognitively competent by the treating physician; and (4) were more than 18 yr of age.

Interviews were transcribed and coded with the constant comparative method. Data were then organized into broad categories around each question and each topical area from the interview guide. Continuous clusters of emergent codes were then organized into themes. The credibility of the coding and emergent model was established by examining the codes, themes, and conclusions with a subsample of study participants after study completion and also through ongoing discussion of coding with a study key informant.

RESULTS: Participants cited negative changes in appearance, resources, or relationships as well as pain, suffering, and the development or exacerbations of other health concerns as the most feared or worrisome aspect of treatment. Patients reported feeling surprised and/or unprepared in coping with these fears and/or their actualization. Treatment and therapy did not adequately address patient fears and worries.

CONCLUSION: Occupational therapy has the potential to meet patient needs, reducing fear and anxiety through coping and adaptation strategies. Such interventions are largely missing from the patient experience and are desired. Limitations of this study include that the study population may not be representative of the larger HNC population and that we did not specifically investigate opportunities unique to occupational therapy intervention.