Staff experiences of working with patients with prolonged disorders of consciousness: a focus group analysis

Abstract

Background/Aims: UK national clinical guidelines recommend assessment of patients in prolonged disorders of consciousness in specialist centres. Working in these centres can be challenging, but little is currently published about what staff experience or how best to support them. We explored the views of health care professionals working with prolonged disorders of consciousness patients in one specialist rehabilitation unit. Methods: Six focus groups were run with allied health professionals, medical and nursing staff in discipline-specific groups to explore the rewards and challenges of working with patients in prolonged disorders of consciousness, and what staff felt they needed to assist them. Transcribed data were analysed using thematic analysis. Findings: Five positive themes emerged: seeing change, supporting families, quality of the team and clinical input, work complexity and its personal impact. Three negative themes were identified: dealing with death and ‘living death’, dealing with family expectations and distress, and the negative professional and personal impact on staff. In terms of what would assist staff, three themes emerged: greater support with family communication, additional prolonged disorders of consciousness-specific training and further development of assessments of awareness. Conclusions: Staff recommendations on what would assist them could be used to inform the development of high-quality approaches to assessment and care in prolonged disorders of consciousness.