README_CALLUS_2023.txt 1. ABOUT THE DATASET ------------ Title: Decision-making in intensive care: the role of relatives Creator(s): Thérèse Callus [1] (Orcid: 0000-0003-1422-5553), Chris Danbury [2] (Orcid: 0000-0001-7807-0541) Organisation(s): 1. University of Reading. 2. Southampton General Hospital Rights-holder(s): University of Reading; University Hospital Southampton NHS Foundation Trust Publication Year: 2023 Description: A pilot project with responses to an anonymous questionnaires by relatives of patients in intensive care units at Southampton General Hospital on their perception and understanding of their role in decision-making for the patient, and identifying what the patient’s wishes were. Questionnaires administered and returned in hard copy at the hospital. A selection of semi-structured and open questions. Cite as: Callus, Thérèse and Danbury, Chris (2023): Decision-making in intensive care: the role of relatives. University of Reading. Dataset. https://doi.org/10.17864/1947.000502 Related publication: Callus, T; Danbury, C. Relatives’ perceptions of their involvement in decision-making for patients in ICU: a pilot study article submitted to British Medical Journal (open), under review - October 2023. Contact: Thérèse Callus, m.t.callus@reading.ac.uk Acknowledgements: The data was collected by research nurse, Norma Diaper, University Hospital Southampton R & D department. 2. TERMS OF USE ------------ Copyright 2023, University of Reading; University Hospital Southampton NHS Foundation Trust. This dataset is licensed under a Creative Commons Attribution 4.0 International Licence: https://creativecommons.org/licenses/by/4.0/. 3. PROJECT AND FUNDING INFORMATION ------------ Title: Decision-making in intensive care: the role of relatives Dates: September 2022-March 2023 Funding organisation: School of Law, University of Reading (strategic funding) 4. CONTENTS ------------ File listing Anonymous Questionnaire (Questionnaire_dataset.docx) Questionnaire answers (Relatives_questionnaire_responses.xlxs) Explanation of data and variables used in the spreadsheet: The columns in the spreadsheet represent each question in the order asked in the questionnaire starting with column B referring to question A1, up to column S representing the free answer under section C of the questionnaire asking if the respondent would be happy to be contacted for follow-up studies. The rows represent each response – numbered 1-60 reflecting the return of 60 questionnaires. X indicates no response was recorded. Column H and O are deliberately left blank to delineate between the different sections. Column I –the respondent’s role so far with the following attributes: A. To listen and be told what the clinical team have decided? B. To say what you believe is the best for the patient? For example, your personal opinion on what you would want for the patient. C. To say what you think the patient would want? For example, you think the patient would or would not want a particular treatment because of what they have said / how they have acted in the past (even though you may not agree with it). D. To say to the clinical team what you know the patient wanted in the circumstances? For example, you know there is an Advance Directive or the patient has told you explicitly in the past. Column J - the respondent’s opinion on what their role should be with the following attributes: A. To say to the clinical team what you know the patient wanted in the circumstances? B. To say what you think the patient would want (the patient’s opinion)? C. To say what you believe is the best for the patient (your opinion)? D. To listen and be told what the clinical team have decided? Column Q – Age-range of respondent with the following attributes: A. 18-34 years B. 35-54 years C. 55-74 years D. 75+ years Column R – Employment status of respondent with the following attributes: A. Employed B. Retired C. Unemployed D. Unpaid carer E. Other 5. METHODS ----------- The questionnaires were administered in hard copy form by a research nurse between September – December 2022. They were then transferred securely to one of the investigators, C.Danbury at Southampton General Hospital who transcribed the responses onto an Excel worksheet. This spreadsheet was then shared with the Chief Investigator, T.Callus through the University of Reading secure, password protected one-drive. Further details on the methodology are described in the article referred to in Section 1, currently under review by the BMJ.