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Service User Participation Within the Mental Health System: Deepening Engagement

Brown, Marie; Jones, Nev
Over the past decade, there has been a marked uptick in interest in increasing service user participation in the U.S. mental health care system, including clinical practice, research, and policy. Too often, however, these efforts remain superficial and unlikely to bring about the deeper transformation of systems long called for by grassroots activists. This Open Forum-addressed to mental health administrators, researchers, and clinicians-highlights the importance of considering diverse, critical perspectives and engaging in ways that move beyond purely intellectual rapprochement.
PMID: 33657837
ISSN: 1557-9700
CID: 4836172

Lived Experience, Research Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline

Jones, Nev; Atterbury, Kendall; Byrne, Louise; Carras, Michelle; Brown, Marie; Phalen, Peter
In recent years, investment in participatory research methods within mental health services research has grown. Participatory efforts are often limited in scope, however, and attention to research leadership is largely absent from discourse about stakeholder involvement in the United States. This Open Forum calls for investment in building a pipeline of researchers with significant psychiatric disabilities and intersecting lived experiences frequently studied in public sector services research, including homelessness, incarceration, comorbid health problems, structural racism, and poverty. A series of concrete steps are described that faculty and research leadership can take now.
PMID: 33691492
ISSN: 1557-9700
CID: 4836182

Barriers to Meaningful Participatory Mental Health Services Research and Priority Next Steps: Findings From a National Survey

Jones, Nev; Callejas, Linda; Brown, Marie; Colder Carras, Michelle; Croft, Bevin; Pagdon, Shannon; Sheehan, Lindsay; Oluwoye, Oladunni; Zisman-Ilani, Yaara
OBJECTIVE/UNASSIGNED:A growing consensus has emerged regarding the importance of stakeholder involvement in mental health services research. To identify barriers to and the extent of stakeholder involvement in participatory research, the authors undertook a mixed-methods study of researchers and community members who reported participation in such research. METHODS/UNASSIGNED:Eight consultative focus groups were conducted with diverse groups of stakeholders in mental health services research (N=51 unique participants, mostly service users), followed by a survey of service users, family members, community providers, and researchers (N=98) with participatory research experience. Focus groups helped identify facilitators and barriers to meaningful research collaboration, which were operationalized in the national survey. Participants were also asked about high-priority next steps. RESULTS/UNASSIGNED:The barrier most strongly endorsed as a large or very large problem in the field was lack of funding for stakeholder-led mental health services research (76%), followed by lack of researcher training in participatory methods (74%) and insufficiently diverse backgrounds among stakeholders (69%). The two most frequently identified high-priority next steps were ensuring training and continuing education for researchers and stakeholders (33%) and authentically centering lived experience and reducing tokenism in research (26%). CONCLUSIONS/UNASSIGNED:These findings suggest a need for increased attention to and investment in the development, implementation, and sustainment of participatory methods that prioritize collaboration with direct stakeholders, particularly service users, in U.S. mental health services research. The findings also underscore the presence and potentially important role of researchers who dually identify as service users and actively contribute a broader orientation from the service user-survivor movement.
PMID: 36935620
ISSN: 1557-9700
CID: 5456802

Strengthening Review and Publication of Participatory Mental Health Research to Promote Empowerment and Prevent Co-optation

Colder Carras, Michelle; Machin, Karen; Brown, Marie; Marttinen, Terry-Lee; Maxwell, Charlotte; Frampton, Barbara; Jackman, Matthew; Jones, Nev
As reviewers, editors, and researchers with lived experience of mental health challenges, addiction, and/or psychosocial distress/disability, the authors have struggled to find an adequate way to address inappropriate or misleading use of the term "participatory methods" to describe research that involves people with lived experience in only a superficial or tokenistic manner. The authors of this article have found that, in their experience, editors or other reviewers often appear to give authors extensive leeway on claims of participatory methods that more accurately reflect tokenism or superficial involvement. The problem of co-optation is described, examples from the authors' experiences are given, the potential harms arising from co-optation are articulated, and a series of concrete actions that journal editors, reviewers, and authors can take to preserve the core intent of participatory approaches are offered. The authors conclude with a call to action: the mental health field must ensure that power imbalances that sustain epistemic injustice against people with lived experience are not worsened by poorly conducted or reported studies or by tokenistic participatory methods.
PMID: 35983659
ISSN: 1557-9700
CID: 5300262

Assessing metamotivation in schizophrenia: A pilot study of the Brief Regulation of Motivation Scale (BRoMS)

Lynch, David A; Brown, Marie; Saperstein, Alice; Stefancic, Ana; Medalia, Alice
Metamotivation is defined as the ability to identify, monitor, and self-regulate motivation in service of goal attainment. As metamotivation is becoming an area of increased interest for intervention among people with psychiatric disorders, there is a need for valid and reliable self-report measures. The current pilot study adapted the Brief Regulation of Motivation Scale (BRoMS; Kim et al., 2018), a self-report measure validated among college students, for use with individuals with schizophrenia spectrum disorders, as a first step towards identifying a metamotivation measure. Thirty-four participants diagnosed with schizophrenia or schizoaffective disorder completed the adapted BRoMS measure and a measure of community functioning. The BRoMS was found to be acceptable, feasible and internally consistent. Higher BRoMs scores were associated with better work related skills. Concurrent and predictive validity were further evaluated among a subsample (n = 21), with comparisons between the BRoMS and participant responses on a semi-structured interview, and measures of self-motivation, and quality of life. The BRoMS demonstrated limited concurrent validity with the interview responses and motivation-related subscales; however, there was modest predictive validity regarding quality of life. This pilot data informs the need for continued efforts to develop and validate metamotivation scales.
PMID: 36037743
ISSN: 1872-7123
CID: 5332032

Metamotivation in people diagnosed with schizophrenia: A conceptual introduction and qualitative study

Hansen, Marie C; Lynch, David A; Stefancic, Ana; Medalia, Alice
Negative symptoms, such as avolition, are considered to be some of the most debilitating symptoms of schizophrenia, yet the mechanisms that contribute to their formation and persistence are poorly understood. In this article, we introduce a novel concept, metamotivation, as having potential implications for avolition, a core negative symptom. Metamotivation is defined as the ability to identify, monitor, and self-regulate motivation in service of goal attainment. In order to explore the potential applicability of metamotivation to schizophrenia spectrum populations, qualitative data from semi-structured interviews were thematically analyzed from 21 people diagnosed with schizophrenia or schizoaffective disorder. Four core themes emerged from the analysis: motivation as unmalleable, motivation as self- regulated primarily through rewards and/or a focus on task outcome, motivation as effortless actions, and motivation as a pleasurable feeling. We discuss these findings with respect to potential inadequacies/errors in motivational knowledge that may occur in people with schizophrenia, which may in turn be implicated in the development and maintenance of avolition. We conclude that metamotivation is a valuable concept for understanding schizophrenia with important research and clinical implications.
PMID: 34325963
ISSN: 1573-2509
CID: 4950012

Validation of the MUSIC Model of Motivation Inventory for use with cognitive training for schizophrenia spectrum disorders: A multinational study

Hansen, Marie C; Jones, Brett D; Eack, Shaun M; Glenthøj, Louise Birkedal; Ikezawa, Satoru; Iwane, Tatsuro; Kidd, Sean A; Lepage, Martin; Lindenmayer, Jean-Pierre; Ljuri, Isidora; Maida, Keiko; Matsuda, Yasuhiro; Nakagome, Kazuyuki; Nordentoft, Merete; Ozog, Veronica; Penney, Danielle; Saperstein, Alice M; Sunaga, Atsuko; Vinogradov, Sophia; Virdee, Gursharan; Wojtalik, Jessica A; Medalia, Alice
AIM/OBJECTIVE:Low motivation is a core symptom of schizophrenia which significantly impacts successful engagement in and benefit from psychosocial treatments. Therefore, it is important for clinicians to design psychosocial treatments to effectively motivate and engage patients during the treatment. The MUSIC® Model of Academic Motivation Inventory (MMI) is an 18-item instrument with five scales that assess students' motivation during academic tasks. The objective of the current study was to validate the MMI for use with schizophrenia-spectrum patients undergoing cognitive training. METHODS:Participants included 181 people with schizophrenia spectrum disorders enrolled in cognitive training in four countries. A confirmatory factor analysis (CFA) assessed construct validity. Quality of fit was determined using the Comparative Fit Index (CFI), the Standardized Root Mean Square Residual (SRMR), and the Root Mean Square Error of Approximation (RMSEA). Pearson's correlation coefficients assessed construct validity and Cronbach's alphas assessed reliability. Furthermore, we examined factor loadings for each inventory item and assessed predictive validity by analyzing MMI scales with attendance outcomes. RESULTS:Consistent with the original MMI validation studies used in academic settings, we found CFI values indicated a good fit, as did the SRMR and RMSEA values. The scales were correlated yet distinct. Cronbach's alpha values ranged from good to excellent and factor loadings showed that all items loaded very well onto their intended factors. The MMI had a positive relationship to treatment intensity. CONCLUSION/CONCLUSIONS:The MMI is a valid and reliable tool to use with individuals with schizophrenia spectrum disorders undergoing a cognitive training intervention.
PMID: 30580895
ISSN: 1573-2509
CID: 3680252

Hallucinations Beyond Voices: A Conceptual Review of the Phenomenology of Altered Perception in Psychosis

Pienkos, Elizabeth; Giersch, Anne; Hansen, Marie; Humpston, Clara; McCarthy-Jones, Simon; Mishara, Aaron; Nelson, Barnaby; Park, Sohee; Raballo, Andrea; Sharma, Rajiv; Thomas, Neil; Rosen, Cherise
Recent psychiatric research and treatment initiatives have tended to move away from traditional diagnostic categories and have focused instead on transdiagnostic phenomena, such as hallucinations. However, this emphasis on isolated experiences may artificially limit the definition of such phenomena and ignore the rich, complex, and dynamic changes occurring simultaneously in other domains of experience. This article reviews the literature on a range of experiential features associated with psychosis, with a focus on their relevance for hallucinations. Phenomenological research on changes in cognition, perception, selfhood and reality, temporality, interpersonal experience, and embodiment are discussed, along with their implications for traditional conceptualizations of hallucinations. We then discuss several phenomenological and neurocognitive theories, as well as the potential impact of trauma on these phenomena. Hallucinations are suggested to be an equifinal outcome of multiple genetic, neurocognitive, subjective, and social processes; by grouping them together under a single, operationalizable definition, meaningful differences in etiology and phenomenology may be ignored. It is suggested that future research efforts strive to incorporate a broader range of experiential alterations, potentially expanding on traditional definitions of hallucinations. Relevance for clinical practice, including emphasizing phenomenologically responsive techniques and developing targeted new therapies, is discussed.
PMCID:6357976
PMID: 30715544
ISSN: 1745-1701
CID: 5286112

Phenomenology of Voice-Hearing in Psychosis Spectrum Disorders: a Review of Neural Mechanisms

Cruz, Lisa N.; Del Pozzo, Jill; Zar, Taylor; Hansen, Marie
ISI:000671997700013
ISSN: 2196-2979
CID: 5286102

Personalised treatment for cognitive dysfunction in individuals with schizophrenia spectrum disorders

Medalia, Alice; Saperstein, Alice M; Hansen, Marie C; Lee, Seonjoo
Cognitive deficits are a well-recognised issue for individuals diagnosed with schizophrenia spectrum disorders. Despite positive group findings for the use of cognitive remediation (CR) interventions, there are substantial individual differences in response to treatment. In addition, the aggregate CR literature reports low moderate effect sizes for cognitive and functional outcomes. Based on personalised medicine theory, this paper uses extant CR literature to examine the individual characteristics determined to predict treatment response. These characteristics, which fall into the broad categories of cognitive, psychological, and biological can be used as tailoring variables to personalise CR to an individual's unique profile. Personalisation through the use of these tailoring variables has the potential to improve the delivery of CR to maximise treatment outcomes.
PMCID:5951177
PMID: 27219068
ISSN: 1464-0694
CID: 5286162