Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy

Abstract

The purpose of this study was to acquire a deeper understanding of head and neck cancer patients' lived experiences of daily life during the trajectory of care, with a focus on eating problems. Nine patients were interviewed in an open dialogue approximately 6 to 8 weeks after completion of radiotherapy. The data analysis was carried out using interpretative phenomenology, inspired by Colaizzi (Existential Phenomenological Alternatives for Psychology; 1978:48-71). The essential structure emerged as "Needing a hand to hold" and consists of 3 interrelated themes, "Disruption of daily life," "Waiting in suspense," and "Left to one's own devices." The findings show that these patients experience a profound disruption in daily life due to eating problems and associated problems caused by the cancer and its treatment before, during, and after treatment. The treatment period was mostly experienced as safe and secure, but there were also experiences of insufficient information and lack of time to ask questions. Before and during pauses in radiotherapy and after completion of treatment, the informants were, to a large extent, left alone with their problems, questions, and worries about the future. To meet these patients' needs, the care must provide greater consistency and continuity throughout the whole trajectory of care.