'We knew it was a totally random thing': parents' experiences of being part of a trial

Harvey, M.E. and Nongena, Phumza and Edwards, David and Redshaw, Maggie (2017) 'We knew it was a totally random thing': parents' experiences of being part of a trial. Trials, 18 (361). pp. 1-9. ISSN 1745-6215

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Studies exploring parents’ trial experiences generally relate to their understanding of the consent process and the development of researcher strategies to facilitate recruitment and retention. The aim was to better understand parents’ experience of being part of a trial at the time and their perceptions of trial participation in retrospect.

Data were collected in a number of ways: from recorded discussions between parents and clinicians about the MRI or ultrasound, in open-text responses to questionnaires and in qualitative interviews at 1 and 2 years after participation. Thematic analysis was undertaken using NVivo10.

Key themes identified were ‘deciding to take part’, with subthemes associated with ‘benefitting self’, ‘benefitting others’ and ‘being prepared’; ‘the randomisation process’ with subthemes relating to ‘acceptance’ and ‘understanding’ and ‘actual engagement’ with subthemes of ‘practicalities’ and ‘care from responsive staff’.

Parents’ perspectives on the trial and the processes and information received reflect their understanding and experience of the trial and the value of parent-friendly information-giving about participation, randomisation and follow-up. The practical and logistical points raised confirm the key issues and parents’ need for sensitive care and support in the course of a trial. Looking back, almost all parents were positive about their experience and felt that the family had benefitted from participation in the trial and follow-up studies, even when the developmental outcomes were poor.

Item Type: Article
Identification Number: https://doi.org/10.1186/s13063-017-2112-3
1 August 2017Published
18 July 2017Accepted
Subjects: CAH01 - medicine and dentistry > CAH01-01 - medicine and dentistry > CAH01-01-01 - medical sciences (non-specific)
CAH02 - subjects allied to medicine > CAH02-04 - nursing and midwifery > CAH02-04-01 - nursing (non-specific)
Divisions: Faculty of Health, Education and Life Sciences > Centre for Social Care, Health and Related Research (C-SHARR)
Depositing User: Merryl Harvey
Date Deposited: 12 Oct 2017 21:39
Last Modified: 03 Mar 2022 17:15
URI: https://www.open-access.bcu.ac.uk/id/eprint/5214

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