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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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.P. 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
Selecting outcome measures in mental health: the views of service users
Crawford, M.J., Robotham, D., Thana, L., Patterson, S., Weaver, T., Barber, R., Wykes, T. and Rose, D. 2011. Selecting outcome measures in mental health: the views of service users. Journal of Mental Health. 20 (4), pp. 336-346. https://doi.org/10.3109/09638237.2011.577114
Siblings of young people with Duchenne muscular dystrophy -- a qualitative study of impact and coping
Read, J., Kinali, M., Muntoni, F., Weaver, T. and Garralda, M.E. 2011. Siblings of young people with Duchenne muscular dystrophy -- a qualitative study of impact and coping. European Journal of Paediatric Neurology. 15 (1), pp. 21-28. https://doi.org/10.1016/j.ejpn.2010.07.006
Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study
Singh, S.P., 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
Drug service user groups: only a partial solution to the problem of developing user involvement
Patterson, S., Weaver, T. and Crawford, M. 2010. Drug service user groups: only a partial solution to the problem of developing user involvement. Drugs: Education, Prevention, and Policy. 17 (1), pp. 84-97. https://doi.org/10.3109/09687630802225495
The prevalence of personality disorder, its comorbidity with mental state disorders, and its clinical significance in community mental health teams
Newton-Howes, G., Tyrer, P., Anagnostakis, K., Cooper, S., Bowden-Jones, O. and Weaver, T. 2010. The prevalence of personality disorder, its comorbidity with mental state disorders, and its clinical significance in community mental health teams. Social Psychiatry and Psychiatric Epidemiology. 45 (4), pp. 453-460. https://doi.org/10.1007/s00127-009-0084-7
A qualitative study of illicit and non-prescribed drug use amongst people with psychotic disorders
Charles, V. and Weaver, T. 2010. A qualitative study of illicit and non-prescribed drug use amongst people with psychotic disorders. Journal of Mental Health. 19 (1), pp. 99-106. https://doi.org/10.3109/09638230802523039
Child involvement in the paediatric consultation: a qualitative study of children and carers' views
Taylor, S., Haase-Casanovas, S., Weaver, T., Kidd, J. and Garralda, E.M. 2010. Child involvement in the paediatric consultation: a qualitative study of children and carers' views. Child: Care, Health and Development. 36 (5), pp. 678-685. https://doi.org/10.1111/j.1365-2214.2010.01076.x
Delusions and qualitative confusions: a dialogic collaborative exploration
Patterson, S., Hart, J. and Weaver, T. 2010. Delusions and qualitative confusions: a dialogic collaborative exploration. Qualitative Health Research. 20 (7), pp. 1008-1018. https://doi.org/10.1177/1049732310363805
Assessment of adverse effects in clinical studies of antipsychotic medication: survey of methods used
Pope, A., Adams, C., Paton, C., Weaver, T. and Barnes, T.R.E. 2010. Assessment of adverse effects in clinical studies of antipsychotic medication: survey of methods used. The British Journal of Psychiatry. 197 (1), pp. 67-72. https://doi.org/10.1192/bjp.bp.109.070961
User involvement in efforts to improve the quality of drug misuse services in England: a national survey
Patterson, S., Weaver, T., Agath, K., Rutter, D., Albert, E. and Crawford, M.J. 2009. User involvement in efforts to improve the quality of drug misuse services in England: a national survey. Drugs: Education, Prevention, and Policy. 16 (4), pp. 364-377. https://doi.org/10.1080/09687630802061544
Dedicated personality disorder services: a qualitative analysis of service structure and treatment process
Price, K., Gillespie, S., Rutter, D., Dhillon, K., Gibson, S., Faulkner, A., Weaver, T. and Crawford, M.J. 2009. Dedicated personality disorder services: a qualitative analysis of service structure and treatment process. Journal of Mental Health. 18 (6), pp. 467-475. https://doi.org/10.3109/09638230902968191
'They can't solve the problem without us': a qualitative study of stakeholder perspectives on user involvement in drug treatment services in England
Patterson, S., Weaver, T., Agath, K., Albert, E., Rhodes, T., Rutter, D. and Crawford, M. 2009. 'They can't solve the problem without us': a qualitative study of stakeholder perspectives on user involvement in drug treatment services in England. Health and Social Care in the Community. 17 (1), pp. 54-62. https://doi.org/10.1111/j.1365-2524.2008.00797.x
Use and perceived utility of structured violence risk assessments in English medium secure forensic units
Khiroya, R., Weaver, T. and Maden, A. 2009. Use and perceived utility of structured violence risk assessments in English medium secure forensic units. Psychiatric Bulletin. 33 (4), pp. 129-132. https://doi.org/10.1192/pb.bp.108.019810
Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): a study of protocols in Greater London
Singh, S.P., Paul, M., Ford, T., Kramer, T. and Weaver, T. 2008. Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): a study of protocols in Greater London. BMC Health Services Research. 8 (1), pp. 1-7. https://doi.org/10.1186/1472-6963-8-135
Attitudes of staff towards patients with personality disorder in community mental health teams
Newton-Howes, G., Weaver, T. and Tyrer, P. 2008. Attitudes of staff towards patients with personality disorder in community mental health teams. Australian & New Zealand Journal of Psychiatry. 42 (7), pp. 572-577. https://doi.org/10.1080/00048670802119739
Social functioning of patients with personality disorder in secondary care
Newton-Howes, G., Tyrer, P. and Weaver, T. 2008. Social functioning of patients with personality disorder in secondary care. Psychiatric Services. 59 (9), pp. 1033-1037. https://doi.org/10.1176/ps.2008.59.9.1033
Dedicated community-based services for adults with personality disorder: Delphi study
Crawford, M.J., Price, K., Rutter, D., Moran, P., Tyrer, P., Bateman, A., Fonagy, P. and Weaver, T. 2008. Dedicated community-based services for adults with personality disorder: Delphi study. The British Journal of Psychiatry. 193 (4), pp. 342-343. https://doi.org/10.1192/bjp.bp.107.043042
Role of qualitative research to inform design of epidemiological studies: a cohort study of mental health of migrants from the former Yugoslavia
Djuretic, T., Crawford, M.J. and Weaver, T. 2007. Role of qualitative research to inform design of epidemiological studies: a cohort study of mental health of migrants from the former Yugoslavia. Journal of Mental Health. 16 (6), pp. 743-755. https://doi.org/10.1080/09638230701496394
Prevalence of personality disorder in alcohol and drug services and associated comorbidity
Bowden-Jones, O., Iqbal, M., Tyrer, P., Seivewright, N., Cooper, S., Judd, A., Weaver, T. and the COSMIC study team 2004. Prevalence of personality disorder in alcohol and drug services and associated comorbidity. Addiction. 99 (10), pp. 1306-1314. https://doi.org/10.1111/j.1360-0443.2004.00813.x
User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers
Crawford, M.J., Aldridge, T., Bhui, K., Rutter, D., Manley, C., Weaver, T., Tyrer, P. and Fulop, N. 2003. User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers. Acta Psychiatrica Scandinavica. 107 (6), pp. 410-414. https://doi.org/10.1034/j.1600-0447.2003.00049.x
Assessing the value of assertive outreach: Qualitative study of process and outcome generation in the UK700 trial
Weaver, T., Tyrer, P., Ritchie, J. and Renton, A. 2003. Assessing the value of assertive outreach: Qualitative study of process and outcome generation in the UK700 trial. The British Journal of Psychiatry. 183 (5), pp. 437-435. https://doi.org/10.1192/bjp.183.5.437
Results of a screening survey for co-morbid substance misuse amongst patients in treatment for psychotic disorders: prevalence and service needs in an inner London borough
Weaver, T., Rutter, D., Madden, P., Ward, J., Stimson, G. and Renton, A. 2001. Results of a screening survey for co-morbid substance misuse amongst patients in treatment for psychotic disorders: prevalence and service needs in an inner London borough. Social Psychiatry and Psychiatric Epidemiology. 36 (8), pp. 399-406. https://doi.org/10.1007/s001270170030
The prevalence and management of co-morbid substance misuse and mental illness: results of a screening survey in substance misuse and mental health treatment populations
Weaver, T., Hickman, M., Rutter, D., Ward, J., Stimson, G. and Renton, A. 2001. The prevalence and management of co-morbid substance misuse and mental illness: results of a screening survey in substance misuse and mental health treatment populations. Drug and Alcohol Review. 20 (4), pp. 407-416. https://doi.org/10.1080/09595230120092724
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
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