Research. The experience of dysphagia and its effect on the quality of life of patients with oesophageal cancer

Abstract

This qualitative study was designed to explore the experience of dysphagia in oesophageal cancer and how this impacts on quality of life. The aim of the study was to add to the knowledge and comprehension of this poorly understood symptom. Data was collected through in-depth interview and administration of the EORTC QLQ-C30 and EORTC QLQ-OES24 quality of life tools with six people with incurable oesophageal cancer who had dysphagia. The interviews were tape-recorded and then transcribed verbatim for each participant. Through a thematic analysis of the interview data and a descriptive analysis of the questionnaires a detailed description of the experience of dysphagia and its impact on quality of life was obtained. Five basic themes emerged from the participant's accounts and these were recognizing dysphagia, the physical experience, the emotions evoked, the impact on social life and dysphagia and treatment. In conclusion dysphagia is a troublesome symptom which affects all aspects of quality of life.

Patients' experiences of supportive care from a long-term perspective after oesophageal cancer surgery – A focus group study

“…Meeting patient's needs after this extensive surgery is a complex task for the healthcare professionals (HCP) and it is realistic to state that the need of supportive care is extensively based on a poor prognosis (Anderson et al, 2011) reduced QOL (Blazeby et al, 2000;Djarv et al, 2008;Lagergren et al, 2007;Olsson et al, 2007;Viklund et al, 2006a) and the fact that the new life situation is affected both from a physical and psychological/emotional perspective (Clarke et al, 2011;Malmström et al, 2013;McCorry et al, 2009;Olsson et al, 2002;Wainwright et al, 2007;Watt and Whyte, 2003). Gender, emotional functioning (Ernstmann et al, 2009), age and time since diagnosis (Sanson-Fisher et al, 2000) are factors that earlier have been associated with enhanced psychosocial or supportive care needs for patients with cancer.…”

Patient, nursing and medical staff experiences and perceptions of the care of people with palliative esophagogastric cancer: a systematic review of the qualitative evidence

“…20,21 Participants in these studies were not specifically asked about their perceptions or experiences of care or how care should be delivered. Participants in Missel and Birkelund's study 20 had incurable EG cancer but it was not outlined how they were recruited to the study.…”

“…21 The Ricoeur analysis is an analytical approach that holds that patient stories are not empirical data but about reality, bringing real understanding and intersubjective knowledge 20 . Colaizzi analysis involves examining each individual phrase and formulating thematic senetences which are then arranged into themes.…”

“…Participants were asked to talk broadly about their lives using a narrative approach. The Watt and Whyte study 21 asked EG cancer patients undergoing palliation of their experience of dysphagia and how it affected their quality of life. This mixed methods study comprised a concurrent quantitative and qualitative study design using quality of life questionnaires and semi-structured interviews to uncover the phenomena of interest.…”

“…Dysphagia -more than a physical problem Dysphagia in curative and palliative EG cancer has been found to have a significant impact on quality of life. 21 This review found that patients became more aware of their body and specifically swallowing as a result of their illness and that eating became a chore. The management of dysphagia and the physical experience of dysphagia in EG cancer have been extensively studied 22,25,31,32,35,38,39 and it was not the purpose of this study to specifically investigate the impact and management of dysphagia.…”