title: Researching experiences of terminal cancer: a systematic review of methodological issues and approaches.
abstract: The objectives of this review were to assess the methods and approaches applied to end-of-life cancer research based on papers focusing on approaches or methodological issues related to seeking the views of people affected by terminal cancer. A comprehensive search of 10 databases (January 1980-February 2004) was undertaken. References were screened, quality assessed and data extracted by two reviewers. Analysis followed a meta-narrative approach. Fifteen papers were included. They discussed 'traditional' approaches, such as focus groups, interviews, surveys, as well as innovative approaches allied to the arts. They reveal that mixed methods are gaining popularity. The emotional demands placed on researchers and the ethical issues involved in this research area were also discussed. We concluded that researchers should embrace innovative approaches from other areas of social science, such as the use of arts-based techniques. This may facilitate recruitment of the hard-to-reach groups and engage with experiences that may be otherwise difficult to verbalize. Although researching the needs of the dying carries challenges, these are not the exclusive domain of the cancer field. This study reveals that diverse methods, from research-based drama to postal questionnaires, can enhance end-of-life research. However, this review reveals the need for more methodological work to be undertaken and disseminated.
authors.affiliation: Division of Community Health Sciences: General Practice Section, University of Edinburgh, Edinburgh, Scotland, UK. Fiona.Harris@ed.ac.uk
authors.forename: F M
authors.initials: FM
authors.lastname: Harris
authors.forename: M
authors.initials: M
authors.lastname: Kendall
authors.forename: A
authors.initials: A
authors.lastname: Bentley
authors.forename: R
authors.initials: R
authors.lastname: Maguire
authors.forename: A
authors.initials: A
authors.lastname: Worth
authors.forename: S
authors.initials: S
authors.lastname: Murray
authors.forename: K
authors.initials: K
authors.lastname: Boyd
authors.forename: D
authors.initials: D
authors.lastname: Brown
authors.forename: N
authors.initials: N
authors.lastname: Kearney
authors.forename: A
authors.initials: A
authors.lastname: Sheikh
mesh_terms: D005260:Female; D006302:Health Services Research; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010358:Patient Participation; D012107:Research Design; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000941:ethics / Q000592:standards*; D019452:Terminally Ill / Q000523:psychology*