title: Of Guinea pigs and gratitude: the difficult discourse of clinical trials from the cancer patient perspective.
abstract: In an ongoing longitudinal qualitative cohort study of cancer patients' needs and preferences across the cancer journey, we harvested a subset of accounts pertaining to conversations between patients and their clinicians around clinical trials. Recognising these conversations as a departure from the more routine discourses of clinical care, in that they enter into new dimensions of investment and motivation on the part of clinicians, we engaged in both secondary analysis of banked data and focussed interviewing of cancer patients to better understand how cancer patients describe communications in relation to decisions pertaining to clinical trials participation. Using constant comparative techniques informed by the interpretive description approach to applied qualitative methodology to guide a systematic analysis of this set of data, we documented patterns and themes across patient accounts. The resulting thematic depiction of clinical trials discourses from a patient perspective contrasts with assumptions apparent in the professional literature relating to the clinical advantage of trials participation, and illuminates aspects of patient-clinician interaction that are particularly amenable to disruption within this delicate and nuanced discourse. Findings from this study have implications for our understanding of the complexities of cancer communication at the delicate intersection of patient care and knowledge generation.
authors.affiliation: School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada. sally.thorne@nursing.ubc.ca
authors.forename: S
authors.initials: S
authors.lastname: Thorne
authors.forename: K
authors.initials: K
authors.lastname: Taylor
authors.forename: J M L
authors.initials: JM
authors.lastname: Stephens
authors.forename: C
authors.initials: C
authors.lastname: Kim-Sing
authors.forename: T G
authors.initials: TG
authors.lastname: Hislop
mesh_terms: D000328:Adult; D000368:Aged; D002986:Clinical Trials as Topic / Q000523:psychology*; D003142:Communication; D003463:Cues; D003657:Decision Making; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010358:Patient Participation; D057240:Patient Preference; D018802:Patient-Centered Care / Q000458:organization & administration; D010817:Physician-Patient Relations
keywords: cancer journey; clinical trial; communication; interpretive description; patient-centred care; psychosocial oncology