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The Perspectives Study: From Evidence to Guidance on Patient Recruitment to Clinical Research in Intensive Care Units, 2016-2019
Creator
Young, B, University of Liverpool
Woolfall, K, University of Liverpool
Frith, L, University of Liverpool
Gamble, C, University of Liverpool
Welters, I, University of Liverpool
Paddock, K, Manchester Metropolitan University
Study number / PID
854286 (UKDA)
10.5255/UKDA-SN-854286 (DOI)
Data access
Restricted
Series
Not available
Abstract
Data collection was conducted across three workstreams.
In workstream (WS) 1, 17 ICU clinicians/researchers, and eight patient and public involvement (PPI) contributors with experience of working on ICU studies, took part in semi-structured telephone interviews about the problems and potential solutions in recruitment and consent to ICU studies. This informed the development of the survey for WS2.
In WS2, 1453 participants from 14 ICUs in England took part in the survey, which explored experiences and views of ICU research recruitment and consent process. Forty-four surveys were either duplicates or had substantial missing data so 1409 surveys were included in the analysis. Of these, 333 surveys were from ICU patients, 488 from family members (of whom 63 were bereaved) and 588 were from healthcare practitioners. Thirty five percent (115/333) of patient surveys and 32% (157/488) of family member surveys were from individuals who reported having been approached about research in the ICU, while 44% (260/588) of healthcare practitioner surveys were from those who indicated they had a role in research.
For WS3, a purposive sample of 60 participants, 54 of whom had completed the WS2 survey, took part in semi-structured interviews to explore their survey responses and their wider perspectives on ICU research in more depth. This included 13 patients, 30 family members (of whom 4 were bereaved before completing the survey, and 5 were bereaved since they or another family member completed the survey), and 17 healthcare practitioners. Of interviewed patients and family members, 25 had been approached about a study while in the ICU. Of healthcare practitioners, 12 had research roles at the time of their interview (3 doctors, 7 research nurses and 2 pharmacists).
The six additional interviewees comprised: four family members of surveyed patients where the family member had visited the patient’s during their ICU stay; two ICU patients whose family members had completed a...
Terminology used is generally based on DDI controlled vocabularies: Time Method, Analysis Unit, Sampling Procedure and Mode of Collection, available at CESSDA Vocabulary Service.
Methodology
Data collection period
01/12/2016 - 30/06/2019
Country
United Kingdom
Time dimension
Not available
Analysis unit
Group
Universe
Not available
Sampling procedure
Not available
Kind of data
Numeric
Text
Data collection mode
Workstream (WS) 1 was a qualitative interview study that described the problems and potential solutions in recruitment and consent to ICU studies. Participants were a purposive sample of ICU clinician-researchers and PPI advocates involved in the design and implementation of studies. Data comprise anonymised transcripts of semi-structured telephone interviews. WS2 was a survey conducted in 14 English hospitals to quantify perspectives on i) ICU recruitment and consent and ii) problems and solutions identified in WS1. This also informed purposive sampling for WS3. Sampling at most sites was opportunistic and respondents were ICU frontline clinicians, patients and their relatives. WS3 was a qualitative interview study that described accounts of: i) views and experiences of ICU recruitment and consent and ii) reasons for responses to the WS2 survey. Participants largely comprised a purposely sampled sub-set of the WS2 survey respondents and included frontline ICU clinicians, patients and their relatives. Data comprise anonymised transcripts of semi-structured telephone and face-to-face interviews. An integrative analysis of workstreams 2 and 3 took place giving rise to WS4, an ethical analysis which lead to the development of good practice guidance to enhance recruitment and consent processes for research in ICUs.
Funding information
Grant number
ES/N006372/1
Access
Publisher
UK Data Service
Publication year
2021
Terms of data access
The Data Collection is available for download to users registered with the UK Data Service. All requests are subject to the permission of the data owner or his/her nominee. Please email the contact person for this data collection to request permission to access the data, explaining your reason for wanting access to the data, then contact our Access Helpdesk.