The impact of involvement in mental health research on views about mental health services and service use: findings from a UK survey

Article

Patterson, S., Trite, J. and Weaver, T. 2016. The impact of involvement in mental health research on views about mental health services and service use: findings from a UK survey. Mental Health and Addiction Research. 1 (2), pp. 47-51. https://doi.org/10.15761/MHAR.1000112
TypeArticle
TitleThe impact of involvement in mental health research on views about mental health services and service use: findings from a UK survey
AuthorsPatterson, S., Trite, J. and Weaver, T.
Abstract

Background: Involvement of service users in mental health research, whether predicated on rights-based or instrumentalist arguments, is appropriately understood as a purposive social action likely to have both intended and unintended consequences. Despite rhetoric and some evidence that involvement is a good thing and confers benefits on the people involved, the impact on involved individuals remain underexplored.
Aims: To describe the impact of involvement in research on views about mental health services and service use.
Method: A cross-sectional survey of service users involved in mental health research across the UK. Data collected from 166 respondents using an online questionnaire were analysed using the framework approach and narratively synthesised.
Results: Involvement, through enabling ‘behind the scenes’ access shaped views of service users about services and service use. Increased awareness of challenges and shortcomings of service delivery shifted expectations, commonly empowering service users to proactively engage in treatment. However, for some respondents, disillusionment led to discontinuation of services.
Conclusions: Empowerment is a common outcome of involvement but a minority of service users may become critical and drop out of services. People considering involvement in research should be informed about the potential impact on their views and service use and be appropriately supported during involvement. The theory of user involvement needed to support robust examination of process and outcomes must encompass unintended consequences.

Keywordsuser involvement, research, mental health, impact, survey, qualitative
PublisherOpen Access Text
JournalMental Health and Addiction Research
ISSN
Electronic2398-5380
Publication dates
Online31 Aug 2016
Publication process dates
Deposited28 Nov 2019
Accepted29 Aug 2016
Output statusPublished
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Copyright Statement

Copyright: ©2016 Patterson S. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Digital Object Identifier (DOI)https://doi.org/10.15761/MHAR.1000112
LanguageEnglish
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A randomised controlled trial of the clinical and cost-effectiveness of a contingency management intervention for reduction of cannabis use and of relapse in early psychosis (CIRCLE): a study protocol for a randomised controlled trial
Johnson, S., Rains, L., Marwaha, S., Strang, J., Craig, T., Weaver, T., McCrone, P., King, M., Fowler, D., Pilling, S., Marston, L., Omar, R., Craig, M. and Hinton, M. 2016. A randomised controlled trial of the clinical and cost-effectiveness of a contingency management intervention for reduction of cannabis use and of relapse in early psychosis (CIRCLE): a study protocol for a randomised controlled trial. Trials. 17 (1). https://doi.org/10.1186/s13063-016-1620-x
Improving GHB withdrawal with baclofen: study protocol for a feasibility study for a randomised controlled trial
Lingford-Hughes, A., Patel, Y., Bowden-Jones, O., Crawford, M., Dargan, P., Gordon, F., Parrott, S., Weaver, T. and Wood, D. 2016. Improving GHB withdrawal with baclofen: study protocol for a feasibility study for a randomised controlled trial. Trials. 17. https://doi.org/10.1186/s13063-016-1593-9
Mind how you cross the gap! Outcomes for young people who failed to make the transition from child to adult services: the TRACK study
Islam, Z., Ford, T., Kramer, T., Paul, M., Parsons, H., Harley, K., Weaver, T., McLaren, S. and Singh, S. 2016. Mind how you cross the gap! Outcomes for young people who failed to make the transition from child to adult services: the TRACK study. BJPsych Bulletin. 40 (3), pp. 142-148. https://doi.org/10.1192/pb.bp.115.050690
An economic evaluation of contingency management for completion of hepatitis B vaccination in those on treatment for opiate dependence
Rafia, R., Dodd, P., Brennan, A., Meier, P., Hope, V., Ncube, F., Byford, S., Tie, H., Metrebian, N., Hellier, J., Weaver, T. and Strang, J. 2016. An economic evaluation of contingency management for completion of hepatitis B vaccination in those on treatment for opiate dependence. Addiction. 111 (9), pp. 1616-1627. https://doi.org/10.1111/add.13385
Hearing voices simulation: Process and outcomes of training
Patterson, S., Goulter, N. and Weaver, T. 2014. Hearing voices simulation: Process and outcomes of training. Journal of Mental Health Training, Education and Practice. 9 (1), pp. 46-58. https://doi.org/10.1108/JMHTEP-01-2013-0003
Use of contingency management incentives to improve completion of hepatitis B vaccination in people undergoing treatment for heroin dependence: a cluster randomised trial
Weaver, T., Metrebian, N., Hellier, J., Pilling, S., Charles, V., Little, N., Poovendran, D., Mitcheson, L., Ryan, F., Bowden-Jones, O., Dunn, J., Glasper, A., Finch, E. and Strang, J. 2014. Use of contingency management incentives to improve completion of hepatitis B vaccination in people undergoing treatment for heroin dependence: a cluster randomised trial. The Lancet. 384 (9938), pp. 153-163. https://doi.org/10.1016/S0140-6736(14)60196-3
Activity and views of service users involved in mental health research: UK survey
Patterson, S., Trite, J. and Weaver, T. 2014. Activity and views of service users involved in mental health research: UK survey. The British Journal of Psychiatry. 205 (1), pp. 68-75. https://doi.org/10.1192/bjp.bp.113.128637
Influences on recruitment to randomised controlled trials in mental health settings in England: a national cross-sectional survey of researchers working for the Mental Health Research Network
Borschmann, R., Patterson, S., Poovendran, D., Wilson, D. and Weaver, T. 2014. Influences on recruitment to randomised controlled trials in mental health settings in England: a national cross-sectional survey of researchers working for the Mental Health Research Network. BMC Medical Research Methodology. 14 (1), p. 23. https://doi.org/10.1186/1471-2288-14-23
Monitoring and management of metabolic abnormalities: mixed-method evaluation of a successful intervention
Wilson, E., Randall, C., Patterson, S., Emmerson, B., Moudgil, V. and Weaver, T. 2014. Monitoring and management of metabolic abnormalities: mixed-method evaluation of a successful intervention. Australasian Psychiatry. 22 (3), pp. 248-253. https://doi.org/10.1177/1039856214529000
The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services
Belling, R., McLaren, S., Paul, M., Ford, T., Kramer, T., Weaver, T., Hovish, K., Islam, Z., White, S. and Singh, S. 2014. The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services. Journal of Health Services Research & Policy. 19 (3), pp. 169-176. https://doi.org/10.1177/1355819614527439
Multi-method Evaluation of the Management, Organisation and Staffing (MEMOS) in high security treatment services for people with Dangerous and Severe Personality Disorder (DSPD)
Trebilcock, J. and Weaver, T. 2010. Multi-method Evaluation of the Management, Organisation and Staffing (MEMOS) in high security treatment services for people with Dangerous and Severe Personality Disorder (DSPD). Personality Disorder Team.
Everybody knows that the prisoner is going nowhere: Parole Board members’ views about dangerous and severe personality disorder in England and Wales
Trebilcock, J. and Weaver, T. 2012. Everybody knows that the prisoner is going nowhere: Parole Board members’ views about dangerous and severe personality disorder in England and Wales. International Journal of Criminology and Sociology. 1, pp. 141-150. https://doi.org/10.6000/1929-4409.2012.01.14
‘Talking a different language’: an exploration of the influence of organizational cultures and working practices on transition from child to adult mental health services
McLaren, S., Belling, R., Paul, M., Ford, T., Kramer, T., Weaver, T., Hovish, K., Islam, Z., White, S. and Singh, S. 2013. ‘Talking a different language’: an exploration of the influence of organizational cultures and working practices on transition from child to adult mental health services. BMC Health Services Research. 13. https://doi.org/10.1186/1472-6963-13-254
The commissioning and provision of advocacy for problem drug users in English DATS; a cross sectional survey
Cargill, T., Weaver, T. and Patterson, S. 2012. The commissioning and provision of advocacy for problem drug users in English DATS; a cross sectional survey. Drugs: Education, Prevention, and Policy. 19 (2), pp. 163-170. https://doi.org/10.3109/09687637.2011.609204
Changing legal characteristics of dangerous and severe personality disorder (DSPD) patients and prisoners
Trebilcock, J. and Weaver, T. 2012. Changing legal characteristics of dangerous and severe personality disorder (DSPD) patients and prisoners. The Journal of Forensic Psychiatry & Psychology. 23 (2), pp. 237-243. https://doi.org/10.1080/14789949.2012.668212
‘It doesn't have to be treatable’: Mental Health Review Tribunal (MHRT) members’ views about Dangerous and Severe Personality Disorder (DSPD)
Trebilcock, J. and Weaver, T. 2012. ‘It doesn't have to be treatable’: Mental Health Review Tribunal (MHRT) members’ views about Dangerous and Severe Personality Disorder (DSPD). The Journal of Forensic Psychiatry & Psychology. 23 (2), pp. 244-260. https://doi.org/10.1080/14789949.2012.668208
Residents’ perceptions of water quality improvements following remediation work in the Pymme’s Brook catchment, north London, UK
Faulkner, H., Green, A., Pellaumail, K. and Weaver, T. 2001. Residents’ perceptions of water quality improvements following remediation work in the Pymme’s Brook catchment, north London, UK. Journal of Environmental Management. 62 (3), pp. 239-254. https://doi.org/10.1006/jema.2001.0435
Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study
Singh, S., Paul, M., Ford, T., Kramer, T., Weaver, T., McLaren, S., Hovish, K., Islam, Z., Belling, R. and White, S. 2010. Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. The British Journal of Psychiatry. 197 (4), pp. 305-312. https://doi.org/10.1192/bjp.bp.109.075135
The Bentham unit: a pilot remand and assessment service for male mentally disordered remand prisoners. II: Report of an independent evaluation
Weaver, T., Taylor, F., Cunningham, B. and Maden, A. 1997. The Bentham unit: a pilot remand and assessment service for male mentally disordered remand prisoners. II: Report of an independent evaluation. The British Journal of Psychiatry. 170 (5), pp. 462-466. https://doi.org/10.1192/bjp.170.5.462