Consumer Perspectives

1
Consumer Perspectives

• Excerpted from the DVD Ethical Dialogues in
  Behavioral Health Research,
• Cultural Competence

2
Goals of Cultural Competence

• Promote awareness of differences between
  cultural/ethnic/racial/linguistic groups
• Restore trust in research
• Enable inclusion of members of diverse groups
• Researchers need to ask how do the principles of
  the Belmont Report apply to diverse groups
• What benefits diverse groups?
• What harms diverse groups?
• How do diverse groups exercise their autonomy?

3
Risks in Cultural Competence

• Process of raising awareness of diverse groups
  can contribute to the stereotyping of these
  groups
• Research is part of a historically racist society
• Perpetuated stereotypes
• Exploited disempowered groups
• The lives of members of certain culturally
  diverse groups not valued as much as others
• Exclusion of diverse groups from research led to
  health disparities

4
Consumers As a Subculture

• Many mental health consumers view themselves as
  part of an unique cultural community
• Developed terms to refer to themselves (e.g.,
  crazy folk, consumers/survivors, people with)
• Developed unique forms of art, music, comedy,
  theater, dance
• Have coherent political agenda
• Hold the values of choice, autonomy, recovery,
  and recognition of the whole person as primary
• Have a unique personal history that they share
  with other consumers
• Provide peer support to each other

5
Stereotyping of Consumers

• People with psychiatric problems discriminated
  against in society at large and in research
• Particular forms of biomedical research viewed as
  negative stereotyping by consumers
• Studies focus on violence among people with
  mental illness dangerous, unpredictable
• Studies focus on deficits in persons with mental
  illness hopeless, helpless
• Studies focus on psychiatric diagnosis or illness
  rather than personhood (wholeness of the
  individual)
• Refer to persons by their disease

6
Consumers and Family Members

• Values differ between mental health consumers and
  their family members
• Consumers value autonomy
• Family members promote promote protection,
  classification of consumers as a vulnerable
  population
• Bound by a shared desire
• Well-being of mental health consumers
• Redressing ethical issues

7
Consumer Discussion Group 1

• Consumers are aware of past research abuse of
  diverse cultural/ethnic/racial groups
• Tuskegee
• Researchers didnt value the existence of African
  Americans as much as others in society
• In segregated society racial prejudice came
  through the research
• Nazi Doctors
• Have a fundamental mistrust of research
  (especially mental health consumers of color)
• Im afraid of researchers am on the defensive
  because I dont want to be taken advantage of.

8
Consumer Discussion Group 1

• Researchers not aware of culture of diverse
  groups
• Researchers need to compensate for their lack of
  knowing
• Researchers need to do research on diverse group
  culture before conducting a study with culturally
  diverse participants
• They need to learn more about the Black
  population How we live and how we are.

9
Consumer Discussion Group 2

• How can researchers restore trust?
• Cultural competence training for researchers
• Inclusion of minority researchers in studies
• I had a dream to get a government grant to do
  research and study African Americans in high
  school. As a Black man I think I could do better
  research for African Americans.

10
Participatory Research Models

• Inclusion of members of diverse populations as
  co-investigators
• Use of collaborative social processes in
  production of research
• Problems in participatory models
• Collaboration requires more time/planning
• Lack of community resources
• Technical assistance, transportation support,
  access to computers and other technology required
  so can be research partners

11
Other Inclusive Models

• Input from members of the community through
  community meetings, focus groups, and Advisory
  Board participation
• Beneficial study designs
• Reliable research
• Researcher concerns about community member
  inclusion
• Participants lack research knowledge
• Participants try to control dissemination of
  findings when study results are perceived as
  culturally threatening
• Participants battle for research resources

12
Other Inclusive Models

• Community Member Responsibilities
• Learn about research
• Follow responsible work practices
• Be deferential to others knowledge