Research Issues for Mental Health Consumers:

Making a Connection Between Research and Advocacy

Boston University Center for Psychiatric Rehabilitation. Innovative Knowledge Dissemination & Utilization

Project for Disability & Professional Stakeholder Organizations/ NIDRR Grant # (H133A050006)

Lesson 1. What is the value of research?

What is the connection between research and advocacy?

What is the connection between research and recovery?

Lesson 2.Purposes of ResearchSome examples….

Discover what is more likely to promote recovery and a better life

Learn what influences recovery in a negative way

Learn what can be done to promote healthy lifestyles

Lesson 3.Types of Research Historical

Descriptive

Developmental

Case and Field Study

Types of Research Relational

Causal – comparative

Quasi Experimental

Experimental

Participatory Action ResearchThose who are being studied:a) select and refine the topic b) select and refine the designc) conduct the studyd) analyze findingse) shape the use of the findings

Quantitative Research Uses numbered responses, scales or

other measures

Design and use of data collection is key

Scientific principles are essential

Qualitative Research Look for new and deeper

understanding of complex issues and trends or themes

Tend to be smaller number of participants

More open ended questions

Lesson IV. Principles of Good Quantitative Research Use the right type of research to

answer the research question

Measure the same thing each time a measure is used

Measure what it is supposed to measure

Principles of Good Qualitative Research Bring new understanding to

complex problems

Find common themes, strategies and challenges and describe them in new ways

Lesson V. Rights and Ethics Absolute commitment to “do no harm”. All participants should be voluntary and fully

informed.

Ensure that participants receive something of value that is not sub-standard.

All information about participants should be

guarded and considered highly confidential.

Lesson VI.Using the ResultsThe two main standards for the usefulnessof the results:

Rigor - is there strong scientific evidence?

Meaning – can it be used to improve lives?

Use of ResultsBe aware, when interpreting or using theresults of factors which may influence

theirbroad use: Who funded it? What benefit might result to the

funders – or others- if the results are used in a particular way?

Use of Results Results of Research can be used to

design or improve treatment or rehabilitation services

Results of Research can be used to fuel advocacy work (Example: if you are advocating peer run respite and have research to show good outcomes, your job is easier.)

Lesson VII. The Past and the Future of Consumer Involvement The old view: consumer is only one

to be studied The new view: involve consumers in

every aspect of the research…Their lived experience can offer a deeper or more subtle understanding that enhances the research and would otherwise be missing.

Connect the Dots……………. Research which is done well can support the efforts of Advocates……

Advocates can support the work of good research

Honor: Just a Few of the Many Pioneers Peter Beresford, Brunel University, London, UK Gayle Bluebird, Independent Consultant, Gainesville, FLA. Jean Campbell, University of Missouri School of Medicine Judi Chamberlin, National Empowerment Center, Lawrence,

MA. Patrick Corrigan, Illinois Institute of Technology, Chicago, IL. Larry Davidson, Yale University, New Haven, CT. Pat Deegan, Pat Deegan & Associates, Byfield, MA. Jonathan Delman, Consumer Quality Initiatives, Boston, MA. Ed Knight, Value Options, CO. Steve Onken, University of Hawai’i, Honolulu, HA. Ruth Ralph, Muskie School of Public Health, Portland, ME. Priscilla Ridgeway, Yale University, New Haven, CT.