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      Harnessing the potential of community-based participatory research approaches in bipolar disorder

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          Abstract

          Background

          Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)—research that is conducted as a partnership between researchers and community members—has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research.

          Methods

          This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom.

          Results and discussion

          We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research.

          Conclusions

          We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

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          Most cited references42

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          Bipolar disorder and quality of life: a patient-centered perspective.

          Several quantitative studies have now examined the relationship between quality of life (QoL) and bipolar disorder (BD) and have generally indicated that QoL is markedly impaired in patients with BD. However, little qualitative research has been conducted to better describe patients' own experiences of how BD impacts upon life quality. We report here on a series of in-depth qualitative interviews we conducted as part of the item generation phase for a disease-specific scale to assess QoL in BD. We conducted 52 interviews with people with BD (n=35), their caregivers (n=5) and health care professionals (n=12) identified by both convenience and purposive sampling. Clinical characteristics of the affected sample ranged widely between individuals who had been clinically stable for several years through to inpatients who were recovering from a severe episode of depression or mania. Interviews were tape recorded, transcribed verbatim and analyzed thematically. Although several interwoven themes emerged from the data, we chose to focus on 6 for the purposes of this paper: routine, independence, stigma and disclosure, identity, social support and spirituality. When asked to prioritize the areas they thought were most important in determining QoL, the majority of participants ranked social support as most important, followed by mental health. Findings indicate that there is a complex, multifaceted relationship between BD and QoL. Most of the affected individuals we interviewed reported that BD had a profoundly negative effect upon their life quality, particularly in the areas of education, vocation, financial functioning, and social and intimate relationships. However, some people also reported that having BD opened up new doors of opportunity.
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            Development of the QoL.BD: a disorder-specific scale to assess quality of life in bipolar disorder.

            There is wide recognition that symptom ratings alone are inadequate to measure outcomes in bipolar disorder (BD), and quality of life (QoL) has been proposed as an important separable construct. Although a literature on QoL in BD exists, there is no disorder-specific measure of QoL in BD. In 2004, we embarked upon a four-year mixed-method program of research to develop such a measure that could function as an outcome tool in clinical trials of pharmacological or psychosocial treatment interventions, longitudinal monitoring, or routine clinical care. The project was informed by standard protocols for the development of disorder-specific QoL measures. Two phases of scale development were pursued across four empirical studies. Item generation involved a qualitative investigation of individuals with BD, family members, and field experts (Study 1), as well as a literature review. Item reduction analyses were conducted using an intensive small-N design with affected individuals (Study 2), a large field sample (Study 3), and a final small-N item reduction study, again involving individuals with the disorder and field experts (Study 4). Initial field testing of the Quality of Life in Bipolar Disorder (QoL.BD) scale supports use of the instrument as a feasible, reliable and valid disorder-specific QoL measure for BD. Internal reliability of the QoL.BD is impressive, test-retest reliability is appropriate, and the direction and magnitude of correlations with external measures are as expected. As a new instrument, the QoL.BD must be compared against existing options for measuring QoL in this population. Significantly, data suggest that the greater specificity of the QoL.BD relative to the Quality of Life Enjoyment and Satisfaction Questionnaire renders the new instrument more sensitive to clinical change in BD. Quality of life scales can provide important information additional to that provided by traditional assessments of outcome in BD. Our intensive, mixed-method development of the QoL.BD has produced a useful additional measure of well-being for this complex and often disabling condition. © 2010 John Wiley and Sons A/S.
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              Dissemination of results in community-based participatory research.

              Community-based participatory research (CBPR) has been promoted as an approach to understanding complex health problems not amenable to research conducted solely by outside investigators. Although broad dissemination of research results is a key element of the CBPR approach, existing dissemination efforts have not been assessed. In this systematic review, researchers evaluated studies utilizing the CBPR approach to characterize dissemination of research results beyond scientific publication. Specifically, the focus was on dissemination to community participants and the general public. The literature search encompassed articles published between January 1, 2005, and December 31, 2009. Corresponding authors were also invited to complete a web-based survey. Data were collected and analyzed between July 1, 2008, and March 8, 2010. In all, 101 articles met inclusion criteria. All articles were assessed for the quality of community involvement in research. Scores ranged from 1.4 to 3.0 (on a 3-point scale), with a mean of 2.3. The 21 articles in which an intervention was evaluated were scored for the rigor of research methods. Scores ranged from 2.0 to 2.9 (on a 3-point scale), with a mean of 2.4. Dissemination beyond scientific publication was reported in 48% of publications with varying levels of detail. However, among survey respondents, 98% reported dissemination of results to community participants and 84% reported dissemination to the general public. Among research meeting strict criteria for inclusion as CBPR, dissemination beyond scientific publication is largely occurring. However, myriad challenges to timely and widespread dissemination remain, and current dissemination to community participants and the general public is variable. Copyright © 2010 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.
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                Author and article information

                Contributors
                +1-604-827-3393 , erin.michalak@ubc.ca
                s.jones7@lancaster.ac.uk
                f.lobban@lancaster.ac.uk
                g.perezalgorta@lancaster.ac.uk
                sjb@psych.ubc.ca
                l.berk@deakin.edu.au
                mikebe@barwonhealth.org.au
                rachelle.hole@ubc.ca
                saralapsley@hotmail.com
                victoria@victoriamaxwell.com
                roumen.milev@queensu.ca
                themcman@me.com
                gwm@swin.edu.au
                mtohen@gmail.com
                samsont@hku.hk
                msanchezdecarmona@mac.com
                sljohnson@berkeley.edu
                Journal
                Int J Bipolar Disord
                Int J Bipolar Disord
                International Journal of Bipolar Disorders
                Springer Berlin Heidelberg (Berlin/Heidelberg )
                2194-7511
                9 February 2016
                9 February 2016
                2016
                : 4
                : 4
                Affiliations
                [ ]Mood Disorders Centre, Department of Psychiatry, University of British Columbia, 2255 Wesbrook Mall, Vancouver, BC V6T 2A1 Canada
                [ ]Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK
                [ ]Department of Psychology, University of British Columbia, Vancouver, Canada
                [ ]IMPACT Strategic Research Centre, Faculty of Health, Deakin University, Geelong, Australia
                [ ]Department of Psychiatry, University of Melbourne, Melbourne, VIC Australia
                [ ]IMPACT Strategic Research Centre, Deakin University, Melbourne, Australia
                [ ]Department of Psychiatry, Orygen Research Centre, and the Florey Institute for Neuroscience and Mental Health, University of Melbourne, Melbourne, VIC Australia
                [ ]Centre for Inclusion and Citizenship, School of Social Work, The University of British Columbia, Vancouver, Canada
                [ ]Department of Education, University of British Columbia, Vancouver, Canada
                [ ]Crazy for Life Co., Sechelt, BC Canada
                [ ]Departments of Psychiatry and Psychology, Queen’s University, Kingston, ON Canada
                [ ]The Bipolar Expert Series, Alpine, CA USA
                [ ]Faculty of Life and Social Sciences, Swinburne University of Technology, Hawthorn, Australia
                [ ]Department of Psychiatry, Health Sciences Center, University of New Mexico, Albuquerque, NM USA
                [ ]Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, China
                [ ]Bipolar Connection Clinic, Mexico City, Mexico
                [ ]Department of Psychology, University of California, Berkeley, CA USA
                Article
                45
                10.1186/s40345-016-0045-5
                4746206
                26856996
                4d06302b-dc77-40da-9e95-f8fe6382d684
                © Michalak et al. 2016

                Open AccessThis 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.

                History
                : 3 November 2015
                : 20 January 2016
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                © The Author(s) 2016

                bipolar disorder,community-based participatory research,research methods,knowledge translation

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