Managing not mending: navigating end of life dysphagia care in adults with head and neck cancer – speech & language therapists’ experiences

Abstract

To date there has been minimal published investigation into the experiences of Speech and Language Therapists in providing end of life dysphagia (swallowing) care to adults with head and neck cancer. In addition, the question of how Speech & Language Therapists are prepared to carry out this role and what they consider to be necessary in order to do this effectively has not been fully considered. This study aimed to make a contribution towards addressing this issue by adopting a qualitative approach, interviewing practising SLTs and providing an opportunity for them to discuss their experiences of working in this field. The research area aligned with a phenomenological methodology which was felt to be the most suitable approach to facilitate a detailed and rich description of their experiences. The intention was that the findings may inform future practice and professional education. Eleven participants consisting of two pilot participants, a focus group of three participants and six individual, main participants from across four health boards in Scotland took part in semi-structured interviews. Interview topics were identified from a broad initial literature search. An Interpretative Phenomenological Analysis approach was taken. The study revealed a wealth of rich data and four super-ordinate themes: 'A risk worth taking' 'Under your skin', 'Communication isn't always wonderful' and 'Trained and equipped'. The findings suggest that there is a considerable emotional impact on SLTs engaged in this type of work and that multi-disciplinary communication is not always effective. Finally, the findings suggest that there is currently a gap in professional training and support.