Evidence map›Paper›PMID 36935620›Full record

ArticlePsychiatric services (Washington, D.C.)2023

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

Nev Jones, Linda Callejas, Marie Brown, Michelle Colder Carras, Bevin Croft, Shannon Pagdon, Lindsay Sheehan, Oladunni Oluwoye, Yaara Zisman-Ilani

Abstract read
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In one paragraph

Article in Psychiatric services (Washington, D.C.), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
16citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

16 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  6. Increasing participation of people with thought disorder in clinical research.European psychiatry : the journal of the Association of European Psychiatrists · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Nev JonesSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Linda CallejasSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Marie BrownSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Michelle Colder CarrasSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Bevin CroftSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Shannon PagdonSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Lindsay SheehanSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Oladunni OluwoyeSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).
Yaara Zisman-IlaniSchool of Social Work, University of Pittsburgh, Pittsburgh (Jones, Pagdon); Child and Family Studies, University of South Florida, Tampa (Callejas); Department of Psychiatry, New York University, New York City (Brown); Bloomberg School of Public Health, Johns Hopkins University, Baltimore (Carras); Human Services Research Institute, Cambridge, Massachusetts (Croft); New York State Psychiatric Institute, New York City (Pagdon); Department of Psychology, Illinois Institute of Technology, Chicago (Sheehan); Department of Community and Behavioral Health, School of Medicine, Washington State University, Spokane (Oluwoye); Department of Social and Behavioral Sciences, Temple University, Philadelphia, and Department of Clinical, Educational and Health Psychology, Division of Psychology and Language Sciences, University College London, London (Zisman-Ilani).

Funding

Improving Engagement among Families Experiencing First-Episode PsychosisK01MH117457 · NIMH · WASHINGTON STATE UNIVERSITY · PI OLUWOYE, OLADUNNI · 2019 to 2022
$667k
NIMH NIH HHS K01 MH117457
6 · The paper itself

Abstract

objectiveA 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.

methodsEight 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.

resultsThe 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%).

conclusionsThese 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.

Indexed as

Mental Health ServicesFocus GroupsHealth Services ResearchHumansReferral and ConsultationSurveys and QuestionnairesCommunity mental health servicesMental health services researchParticipatory methodsPatient advocacyResearch design and methodologyService user involvement in research

Identifiers

PMID36935620
PMCPMC11022526

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.