“What's the point?” exploring rehabilitation for people with 1° CNS tumours using ethnography: Patients' perspectives

Abstract

Background and Purpose. Primary central nervous system (1° CNS) tumours represent 2% of cancers. They record the third highest mortality from cancer in the 18–35 age group in the UK today. Despite improving medical treatments, prognosis remains poor, with more patients experiencing residual complex functional deficits. Rehabilitation for these patients is scantily researched. Observational studies demonstrate improved function following inpatient and some outpatient multi-professional rehabilitation. Comparative recovery and functional improvement between patients with 1° CNS tumours and differing oncological and other neurological diagnoses is shown. Qualitative papers explore patient's values of medical treatment, demonstrating themes of hope and improved quality of life (QOL). No studies explore the significance of rehabilitation for these patients. The aim of this study was to discover the meaning of rehabilitation for people with this life-limiting illness through ethnographic enquiry. Methods. Fieldwork data, primarily written narratives, field notes and interviews, were collected from 10 patients with 1° CNS tumours receiving physiotherapy at a UK specialist cancer hospital. They were asked what they thought the purpose of rehabilitation was in the context of their disease. Thematic analysis explored this data. Results. Patient experience provided insightful perception of the beneficial role of rehabilitation in the context of their incurable disease. Main emergent themes included independence, confidence, ‘professional talk’ (the broader sense of communication through talk, touch and therapeutic handling) and hope. An analogy presents an analytical model of the themes. Incidental findings identified difficulty accessing services. Conclusion. Rehabilitation intervention offers positive contributions to patients with 1° CNS tumours improving QOL irrespective of the stage of their disease. With equal access to cancer services, a key aim advocated in national directives in health-care today, it is essential that patients receiving treatment for this life-limiting disease have timely access to rehabilitation services in conjunction with holistic medical management. Copyright © 2010 John Wiley & Sons, Ltd.

Ethics

The Royal Marsden Hospital Committee for Clinical Research (CCR)

The Royal Marsden Hospital Research Ethics Committee (LREC)

Central Office of Research Ethics Committee (COREC) COREC 05/Q0801/130 superseded by The National Research Ethics Service University of Surrey Ethics Committee.