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dc.creatorGysels, Marjoleinen
dc.creatorShipman, Cathyen
dc.creatorHigginson, Irene J.en
dc.date.accessioned2016-01-08T23:15:15Zen
dc.date.available2016-01-08T23:15:15Zen
dc.date.created2008-04-24en
dc.date.issued2008-04-24en
dc.identifierdoi:10.1186/1472-6939-9-7en
dc.identifier.bibliographicCitationBMC Medical Ethics [electronic] 2008 April 24; 9:7. 6 p. Accessed: http://www.biomedcentral.com/1472-6939/9/7 [2008 May 24]en
dc.identifier.urihttp://worldcatlibraries.org/registry/gateway?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Is+the+qualitative+research+interview+an+acceptable+medium+for+research+with+palliative+care+patients+and+carers?&title=BMC+Medical+Ethics+&volume=&issue=&date=2008-04&au=Gysels,+Marjolein;+Shipman,+Cathy;+Higginson,+Irene+J.en
dc.identifier.urihttp://dx.doi.org/10.1186/1472-6939-9-7en
dc.identifier.urihttp://timetravel.mementoweb.org/memento/2008/http://www.biomedcentral.com/1472-6939/9/7en
dc.identifier.urihttp://hdl.handle.net/10822/957580en
dc.description.abstractBackground: Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods: A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results: The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion: The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.en
dc.formatArticleen
dc.languageenen
dc.sourceeweb:316091en
dc.subjectConsent Formsen
dc.subjectConsenten
dc.subjectFormsen
dc.subjectInformed Consenten
dc.subjectInterviewsen
dc.subjectMethodsen
dc.subjectPalliative Careen
dc.subjectPatientsen
dc.subjectQualitative Researchen
dc.subjectResearchen
dc.subject.classificationHuman Experimentation Policy Guidelines / Institutional Review Boardsen
dc.subject.classificationResearch on Elderly and Terminally Ill Personsen
dc.titleIs the Qualitative Research Interview an Acceptable Medium for Research With Palliative Care Patients and Carers?en
dc.provenanceCitation prepared by the Library and Information Services group of the Kennedy Institute of Ethics, Georgetown University for the ETHXWeb database.en
dc.provenanceCitation migrated from OpenText LiveLink Discovery Server database named EWEB hosted by the Bioethics Research Library to the DSpace collection EthxWeb hosted by DigitalGeorgetown.en


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