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      Decision making and support available to individuals considering and undertaking electroconvulsive therapy (ECT): a qualitative, consumer-led study

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          Abstract

          Background

          Electroconvulsive therapy (ECT) is one of the most controversial treatments in psychiatry. This controversy and diverse and often strongly held opinions can make decision making processes around ECT more complex.

          Method

          This consumer-led project explored the experiences of individuals who had received ECT in terms of the information they received, their experience of ECT and suggestions for ways that decision making processes and experiences of ECT can be improved. Interviews were conducted by consumer researchers who had also received ECT and transcripts were analysed using constant comparative techniques.

          Results

          Seventeen individuals participated. Four overarching categories were identified from participant interviews : Information matters; Preparation and decisions before ECT; Experience of ECT; and Suggestions for improvement. Most participants suggested that more information was required and that this information should be made available more regularly to support decision making. Additional suggestions included greater involvement of family and friends (including having a family member or friend present during the ECT procedure), opportunities to gain information from individuals who had received ECT and more support for managing memory and cognitive side effects.

          Conclusion

          This study provides valuable consumer-provided insights and recommendations for psychiatrists and mental health clinicians working within ECT clinics and with consumers considering or preparing for ECT.

          Electronic supplementary material

          The online version of this article (10.1186/s12888-018-1813-9) contains supplementary material, which is available to authorized users.

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          Most cited references20

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          Patients' perspectives on electroconvulsive therapy: systematic review.

          To ascertain patients' views on the benefits of and possible memory loss from electroconvulsive therapy. Descriptive systematic review. Psychinfo, Medline, Web of Science, and Social Science Citation Index databases, and bibliographies. Articles with patients' views after treatment with electroconvulsive therapy. 26 studies carried out by clinicians and nine reports of work undertaken by patients or with the collaboration of patients were identified; 16 studies investigated the perceived benefit of electroconvulsive therapy and seven met criteria for investigating memory loss. The studies showed heterogeneity. The methods used were associated with levels of perceived benefit. At least one third of patients reported persistent memory loss. The current statement for patients from the Royal College of Psychiatrists that over 80% of patients are satisfied with electroconvulsive therapy and that memory loss is not clinically important is unfounded.
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            Peer support in adult mental health services: a metasynthesis of qualitative findings.

            Peer support involves people in recovery from psychiatric disability offering support to others in the same situation. It is based on the belief that people who have endured and overcome a psychiatric disability can offer useful support, encouragement, and hope to their peers. Although several quantitative reviews on the effectiveness of peer support have been conducted, qualitative studies were excluded. This study aimed to synthesize findings from these studies.
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              Consumer participation in mental health research: articulating a model to guide practice.

              Consumer involvement in mental health research is considered both a right and a benefit, despite the identified barriers to forming effective collaborative relationships. The purpose of this paper is to examine the literature relating to consumer involvement in mental health research with a view to articulating a model to guide this process. A qualitative review of the relevant literature was undertaken. Literature referring to consumer roles in research was accessed and reviewed with the aim of articulating the benefits of, and barriers to, consumer participation in research. The literature has identified a number of important benefits and some significant barriers to consumer involvement in mental health research. However, a clear model to articulate definitions of involvement is lacking. Four distinct levels of involvement were articulated. The identification of clearly defined models for consumer involvement in mental health research is important in order to facilitate collaboration and avoid tokenism. Research is required in order to determine the applicability of these models within actual research projects.
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                Author and article information

                Contributors
                +61 490 768 363 , kwel8554@uni.sydney.edu.au
                justin.scanlan@sydney.edu.au
                lis.g173@gmail.com
                scott.rutter@bigpond.com
                nicola.hancock@sydney.edu.au
                anthony.tuite@hnehealth.nsw.gov.au
                Joanna.Ho@health.nsw.gov.au
                Sarah.Jacek@health.nsw.gov.au
                Andrew.Jones1@health.nsw.gov.au
                Hassan.Mehdi@health.nsw.gov.au
                Megan.Still@health.nsw.gov.au
                Graeme.Halliday@health.nsw.gov.au
                Journal
                BMC Psychiatry
                BMC Psychiatry
                BMC Psychiatry
                BioMed Central (London )
                1471-244X
                24 July 2018
                24 July 2018
                2018
                : 18
                : 236
                Affiliations
                [1 ]New Horizons Inc, Ashfield, Australia
                [2 ]ISNI 0000 0004 1936 834X, GRID grid.1013.3, The University of Sydney, Faculty of Health Sciences, ; PO Box 170, Lidcombe, NSW 1825 Australia
                [3 ]Sydney Local Health District, Mental Health Services, Concord, Australia
                Author information
                http://orcid.org/0000-0001-8042-533X
                Article
                1813
                10.1186/s12888-018-1813-9
                6056939
                30041602
                84472cca-f847-4345-8068-69acbdc8d6b0
                © The Author(s). 2018

                Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.

                History
                : 13 March 2018
                : 10 July 2018
                Funding
                Funded by: Inner West Sydney Partners in Recovery Innovative Grant Program
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Clinical Psychology & Psychiatry
                electroconvulsive therapy,consumer-led research,service user research,qualitative methods,patient experience

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