Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/23251
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Identifying components in consent information needed to support informed decision making about trial participation: an interview study with women managing cancer
Authors: Abhyankar, Purva
Velikova, Galina
Summers, Barbara A
Bekker, Hilary L
Contact Email: purva.abhyankar@stir.ac.uk
Keywords: shared decision making
informed consent
trial participation
cancer treatment
decision aids
Issue Date: Jul-2016
Publisher: Elsevier
Citation: Abhyankar P, Velikova G, Summers BA & Bekker HL (2016) Identifying components in consent information needed to support informed decision making about trial participation: an interview study with women managing cancer, Social Science and Medicine, 161, pp. 83-91.
Abstract: Background: Research governance requires patients give informed consent to participate in clinical trials. However, there are concerns that consent information may not support patient participation decisions. This study investigates the utility of consent information in supporting women's trial participation decisions when receiving treatment for cancer.  Design: An interview study with women receiving cancer treatments at a medical oncology outpatient clinic in Yorkshire (UK). All women over 18 years, not admitted to a hospital ward and who had currently or previously been invited to take part in a trial were invited to take part in the study over a three month period. Interviews were audio-tape recorded, transcribed and analysed using thematic analysis.  Results: 21/41 eligible women with breast (n=11), ovarian (n=8) and endometrial (n=2) cancer participated; mean age 57 years. Eighteen had made at least one trial decision and three were considering taking part in a trial. Findings are synthesised under two analytical themes: 1) Influence of the cancer and cancer treatment context on decision making for trial participation and 2) Experiences of the consenting process and their influence on decision making.  Conclusions: Designing trial information to represent explicitly the trial participation decision as being between standard care and study-related care options is more likely to effectively support patients in making informed decisions between standard care treatments and taking part in a trial.
Type: Journal Article
URI: http://hdl.handle.net/1893/23251
DOI Link: http://dx.doi.org/10.1016/j.socscimed.2016.05.040
Rights: This item has been embargoed for a period. During the embargo please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study. Accepted refereed manuscript of: Abhyankar P, Velikova G, Summers BA & Bekker HL (2016) Identifying components in consent information needed to support informed decision making about trial participation: an interview study with women managing cancer, Social Science and Medicine, 161, pp. 83-91. DOI: 10.1016/j.socscimed.2016.05.040 © 2016, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International http://creativecommons.org/licenses/by-nc-nd/4.0/
Affiliation: HS - Management and Support
University of Leeds
University of Leeds
University of Leeds

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