title: Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life.
abstract: Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.
authors.affiliation: Macmillan Research Unit, University of Southampton, Highfield, UK. jbh@soton.ac.uk
authors.forename: Jane B
authors.initials: JB
authors.lastname: Hopkinson
authors.forename: David N M
authors.initials: DN
authors.lastname: Wright
authors.forename: Jessica L
authors.initials: JL
authors.lastname: Corner
mesh_terms: D032984:Ethics, Research; D005260:Female; D006801:Humans; D008297:Male; D010166:Palliative Care; D018579:Patient Selection; D015397:Program Evaluation; D012107:Research Design / Q000592:standards*; D011795:Surveys and Questionnaires / Q000592:standards; D013727:Terminal Care