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Staff and service users' views on a 'Consent for Contact' research register within psychosis services: a qualitative study

Papoulias, C; Robotham, D; Drake, GF; Rose, D; Wykes, T; (2014) Staff and service users' views on a 'Consent for Contact' research register within psychosis services: a qualitative study. BMC Psychiatry , 14 , Article 377. 10.1186/s12888-014-0377-6. Green open access

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Abstract

Background: Recruitment to mental health research can be challenging. ‘Consent for Contact’ (C4C) is a novel framework which may expedite recruitment and contribute to equitable access to research. This paper discusses stakeholder perspectives on using a C4C model in services for people with psychosis. / Method: This is a cross sectional study investigating the views of service users and staff using qualitative methods. Eight focus groups were recruited: five with service users (n = 26) and three with clinicians (n = 17). Purposive sampling was applied in order to reflect the local population in terms of ethnicity, experience of psychiatric services and attitudes towards research. / Results: Staff and service users alike associated the principle of ‘consent for contact’ with greater service user autonomy and favourable conditions for research recruitment. Fears around coercion and inappropriate uses of clinical records were common and most marked in service users identifying as having a negative view to research participation. Staff working in inpatient services reported that consenting for future contact might contribute to paranoid ideation. All groups agreed that implementation should highlight safeguards and the opt-in nature of the register. / Conclusions: Informed consent Staff and service users responded positively to C4C. Clinicians explaining C4C to service users should allay anxieties around coercion, degree of commitment, and use of records. For some service users, researcher access to records is likely to be the most challenging aspect of the consultation.

Type: Article
Title: Staff and service users' views on a 'Consent for Contact' research register within psychosis services: a qualitative study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12888-014-0377-6
Publisher version: http://dx.doi.org/10.1186/s12888-014-0377-6
Language: English
Additional information: Copyright © Papoulias et al.; licensee BioMed Central. 2014. This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://​creativecommons.​org/​licenses/​by/​4.​0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://​creativecommons.​org/​publicdomain/​zero/​1.​0/​) applies to the data made available in this article, unless otherwise stated.
Keywords: Informed consent, Health records, Research register, Recruitment, Service user involvement, Psychosis
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/1478370
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