Advancing the Clubhouse Mission and Model with Participatory Research

Summer M. Berman, Lori D’Angelo, Jessica A. Wojtalik

Michigan Clubhouse Conference

Monday, July 29, 2024 | 9:00am-10:15am

Workshop Objectives

• Objective 1:
• Outline four (4) reasons Clubhouses should consider participating in formal research.
• Objective 2:
• Use the Center for Clubhouse Research’s “Recommended Procedures for Research in Clubhouse Programs” to guide best practices in Clubhouse Research.
• Objective 3:
• Understand how to develop mutually beneficial partnerships with university researchers.
• Objective 4:
• Use Clubhouse International’s Transforming Lives: Clubhouse Impact Report in your Clubhouse’s community awareness efforts.

Agenda

• Overview of research
• Why Clubhouses should engage in research
• How to do research at your Clubhouse
• How to use and share your research results
• Recent research and other tools

What is research?

• “Research involves activities specially designed to develop or contribute to knowledge. A research project is usually described in a formal protocol or plan that sets forth an objective or a set of procedures designed to reach that objective.” (Johnsen & McKay, 2002, Recommended Procedures for Research in Clubhouse Programs)

Now’s the time to get involved in research!

https://www.nimh.nih.gov/about/strategic-planning-reports

https://www.pcori.org/

Four reasons for Clubhouse Participation in Research

• Reason 1: Increases the Clubhouse Evidence-Base
• Reason 2: Improved Clubhouse Outcomes
• Reason 3: Member and Staff Empowerment
• Reason 4: Contribution to the Field of Community-Based Mental Health Care

Four reasons for Clubhouse Participation in Research

Bonus Reason: Alex’s Story

saved my life

How the Scientific Method

How to get involved in research

• Start your own research project

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• Partner with University Researcher
• Reach out to a University partner
• Engage with a University partner that reaches out to you

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Don’t be intimidated by research!

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Start your own research project

Question to be answered + standardized procedures/protocols

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What should we eat for lunch?

How can we recruit more young adults?

Is our application/referral process effective at helping eligible prospective members join the Clubhouse?

complexity & specificity

Does the number of Clubhouse engagements in a day/week/month have any impact on a member’s self-confidence?

Tips for Success With Internal Research Projects

1. Find out if other colleagues in your Clubhouse are interested in the same question.
2. A small group can propose the idea at a House Meeting
3. Put together a team to organize the project
4. Review similar research projects
5. Seek guidance from experienced researchers
6. Ensure there are a variety of ways to involve colleagues: planning, implementing, collecting data, providing data, analyzing data
7. Incorporate ways to keep the internal and external community apprised of progress as appropriate
8. Take advantage of guidance from the UMass Program for Clubhouse Research: Research Procedures for Clubhouse Programs

Recommended Procedures for Research in Clubhouse Programs

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Section 1. Procedures for All Clubhouse Research

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Section 2. Procedures for Internally-Directed Research Within a Clubhouse

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Section 3. Procedures for Externally-based research

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Section 4. Multisite Research Studies

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Tips for Success When Working with a University Partner

• Be persistent
• Discuss early how the research process will work with your partner (it will evolve overtime)
• Advocate for yourself (mutually beneficial partnership)
• Meet regularly
• Reach out to other Clubhouses that have worked with a University partner
• Fountain House
• Magnolia Clubhouse
• Utilize Clubhouse research resources
• Fountain House’s research unit
• Program for Clubhouse Research [Colleen McKay]
• Data Collection and Research Subcommittee
• Not all engagements will be a success or lead to anything
• Be patient, research moves very slow
• Be aware that University's have lots of research policies and documentation

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Elements that go into a formal partnership

• Any research conducted with a University partner needs Institutional Review Board (IRB approval)
• Lots of questions, emails, and meetings
• Sharing data
• Letters of support
• Other research-related documents
• HIPPA exemption
• Data use agreements
• Informed consent
• Memorandum of Understanding (MOU)
• An MOU outlines the terms of the collaboration, including goals, timelines, roles, and responsibilities.
• Manuscript authorship (if interested and agreed upon with researcher)
• Ethical guidelines for authorship
• Acknowledgment sections

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Share the Research Findings

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Research and Return on Investment

• Higher rates of employment
• Better quality of life
• Reduced isolation
• Lower rates of hospitalization
• Lower rates of incarceration

A year at the Clubhouse costs less than a week in the hospital!

Transforming Lives: Clubhouse Impact Report

https://clubhouse-intl.org/impact-report/

Transforming Lives:

CLUBHOUSE IMPACT REPORT

Joy Agner, PhD, OTR/L, Yongshi Wang, Elizabeth Bau

Last Updated:

Clubhouse Impact Theory of Change

Social Functioning

Employment

Belief in Oneself

Physical Health

Psychiatric Symptoms

Stigma

Hospitalizations

& Cost of Care

Quality of Life

Belief in Oneself

(Bouvet et al., 2021)

Over an 18-month period, Clubhouse members reported improved confidence in their ability to complete projects, face daily tasks, and establish social relationships.

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Confidence

Customizable Slide:

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Add a custom slide on belief in oneself

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(Insert Images Here)

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• Tell a personal story (especially whoever is presenting the slide) about a member increasing self-esteem, self-determination, and self-confidence

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• Image Ideas: member leading a meeting

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Beyond Treatment: How Clubhouses for People Living with Serious Mental Illness Transform Lives and Save Money

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https://fountainhouse.org/reports/beyond-treatment

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Estimated cost savings that could be expected by increasing access to Clubhouses

Clubhouse Economic Model Whitepaper

Research and Data Subcommittee

Purpose:   The Clubhouse International Coalitions and Associations Committee is established for the following purposes.

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• To provide a forum for ongoing discussion, support and education for Clubhouse Coalitions.
• To provide Clubhouse Coalitions with the opportunity to provide advice and feedback to Clubhouse International about strategic priorities, activities and programs
• Promote and coordinate local Clubhouse participation in Clubhouse International initiatives. (e.g. new Clubhouse expansion, training, accreditation, advocacy and research)

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DATA COLLECTION and RESEARCH The committee will focus on establishing uniformity of what we collect around the world, and how we analyze and report on it

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Research and Data Subcommittee

• Meets monthly to review current research projects, provide guidance to prospective research studies, and work to improve systems for data collection for all Clubhouses
• Chaired by Clubhouse Michigan. Reachout to Tara or Leasa from Sheldon Clubhouse or Summer
• Worked with Colleen McKay at UMass to update CPQ
• Working with the Strengthening Coalitions Subcommittee to write a Data & Research chapter for Strengthening Coalitions Toolkit
• Working on an expanded Data & Research Toolkit
• Working with Colleen McKay to update the Recommended Research Procedure

Other Clubhouse Research Resources

Clubhouse International Research Highlights

https://clubhouse-intl.org/what-we-do/research/

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Clubhouse International Research Hub

https://clubhouse-intl.org/recent-research/

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Program for Clubhouse Research

https://www.umassmed.edu/sparc/isparccenters/program-for-clubhouse-research/

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Clubhouse Michigan Microsite Resource Page

https://sites.google.com/clubhousemichigan.org/clubhousemichigan/resources

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Thank you!

Q&A