This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.

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BackgroundThis study reports long‐term head and neck cancer (HNC) patient‐reported symptoms using the MD Anderson Symptom Inventory Head and Neck Cancer Module (MDASI‐HN) in a large cohort of HNC survivors.MethodsMDASI‐HN results were prospectively collected from an institutional survivorship database. Associations with clinicopathologic data were analyzed using χ2, Mann‐Whitney, and univariate regression.ResultsNine hundred and twenty‐eight patients were included. Forty‐six percent had oropharyngeal primary tumors. Eighty‐two percent had squamous cell carcinoma. Fifty‐six percent of patients had ablative surgery and 81% had radiation therapy as a component of treatment. The most severe symptoms were xerostomia and dysphagia. Symptom scores were worst for hypopharynx and varied by subsite. Patients treated with chemoradiation or surgery followed by radiation ± chemotherapy reported the worst symptoms while patient treated with surgery plus radiation ± chemotherapy reported the worst interference.ConclusionHNC survivors describe their long‐term symptom burden and inform efforts to improve care many years into survivorship.

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