PAR: Barriers and Ethical Considerations

Jonathan Pickens

What is PAR?

• Participatory Action Research (PAR),
  • Community Based Participatory Research (CBPR)  

• PAR is NOT a specific method  (1)

• Inclusive form of inquiry to enhance existing methodologies (2)

• Inquiry as a means to social change

• Concern for the kind of knowledge produced and how it is produced (3)

  • Knowledge isn't neutral! An Incomplete list of missing data-sets

1. Pain, R., & Francis, P. (2003). Area, 35(1), 46-54.

2. Khanlou, N., & Peter, E. (2005). Science & Medicine, 60(10), 2333–2340.

3. Gustafson, D. L., & Brunger, F. (2014) Qual Health Research, 24(7), 997–1005

Ok, but what is PAR?

• Participant-Researcher relationship re-framed as an exchange

• PAR is characterized by being:  (1)

  1. Participatory

  2. Cooperative

  3. A co-learning process

  4. supportive of systems development and capacity building

  5. Empowering to participants

  6. Balanced between research and action

 

1. Israel, et al (1998). Annual review of public health, 19(1), 173-202

 

History of PAR

Action Research

"Northern Tradition"

• Clinical & Social Psychology traditions
• 1946- Kurt Lewin coined approach in which combined generation of theory with changing the social system

Participation Research

"Southern Tradition"

• Early 1970s-  Many traditions develop in global south, often independently (e.g. Friere)
• 1981- Budd L. Hall defines the practice as a structural change for exploited/oppressed groups to steer research.

 

PAR popularized in adult education, cross-cultural, and health research

1. Khanlou, N., & Peter, E. (2005). Science & Medicine, 60(10), 2333–2340.

Why bother?

1. Gustafson, D. L., & Brunger, F. (2014) Qual Health Research, 24(7), 997–1005

 

Ethics of PAR

In line with Principals of APA Ethics Code

• A) Beneficence and Nonmaleficence
  • Priotitizing participant needs
• B) Fidelity and Responsibility
• E) Respect for People's Rights and Dignity
  • Maximizes participant self-determination
• D) Justice
  • Acknowledges researcher bias and boundaries of competence
  • Fair and equal research process
  • Serves the interests of participants

Ethics of PAR

• Other Ethical benefits:
  • Distribution of research benefits/risks
  • Focus on education
    • (8.08) Debriefing as a form of knowledge transfer
    • Including skills (e.g. spotting deception)   (1)

  • Chabot et al. (2012) collaboration and informed consent in youth research.  (2)

  • Critical epistemological paradigms

    • participant-entered,  prioritizing "useful" knowledge.

1. McShane, et al (2015). Canadian Psychology; Ottawa, 56(1), 80–87.

2. Chabot, et al. (2012). J of Empirical Research on Human Research Ethics, 7(2), 20–33.

 

Ethical issues with PAR

Deviation from APA Standards

• 3.05 Multiple Relationships
• 8.01 Institutional Approval

  • “obtain approval prior to conducting the research. They conduct the research in accordance with the approved research protocol.”

• 8.02 Informed consent to Research

  • (1) the purpose of the research, expected duration, and procedures;
• 8.12 Publication Credit
• 8.13 Duplicate Publication of Data

Other Considerations

• Oppositional nature may increase risk (Principle A & E)
• PAR sometimes viewed dubiously by academia
• Structural obstacle: PAR protocals may be difficult to evaluate in ethical review process (catch-22s)

• Social dynamics and conventions surrounding research, policy making, and P-R  relationship.  (2)

• Proposed guidelines after review of ethical review frameworks:  (1a)

1. Khanlou, N., & Peter, E. (2005). Science & Medicine, 60(10), 2333–2340.

   • A) Emanuel Wendler and Grady (2000))

2. Chabot, et al. (2012). J of Empirical Research on Human Research Ethics, 7(2), 20–33.

• independent review
• informed consent
• respect for participant

• social or scientific value
• scientific validity
• fair subject/participant selection
• favorable risk–benefit ratio

Example: "Vulnerable" peoples

• 1979 The Belmont Report  defined concept of "vulnerable subject" in response to unethical research
  • Label conceptualizes all members of the group as ineffective, often tying it to biology
• PAR with disabled populations
  • Highlights "differently abled" understanding

Gustafson, D. L., & Brunger, F. (2014) Qual Health Research, 24(7), 997–1005

Proposed Solutions

• Improve understanding of PAR among peers (esp IRB members)

• Integrate least problematic aspects of PAR

  • Be receptive to participants – include feedback by design

  • Acknowledging different forms of knowledge present in population of interest

  • Research as an exchange

• Delphi Method to mitigate issues with catch-22s

• IoR in addition to consent forms

• Iterative designs

 

Gustafson, D. L., & Brunger, F. (2014) Qual Health Research, 24(7), 997–1005

Pain, R., & Francis, P. (2003). Reflections on participatory research. Area, 35(1), 46-54.

References

Chabot, C., Shoveller, J. A., Spencer, G., & Johnson, J. L. (2012). Ethical and epistemological insights: A case study of participatory action research with young people. Journal of Empirical Research on Human Research Ethics, 7(2), 20–33.

 

Gustafson, D. L., & Brunger, F. (2014). Ethics,“vulnerability,” and feminist participatory action research with a disability community. Qualitative Health Research, 24(7), 997–1005.

 

Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). REVIEW OF COMMUNITY-BASED RESEARCH: Assessing Partnership Approaches to Improve Public Health. Annual Review of Public Health, 19(1), 173–202.

 

Khanlou, N., & Peter, E. (2005). Participatory action research: considerations for ethical review. Social Science & Medicine, 60(10), 2333–2340.

 

L’Etang, S., & Theron, L. (2012). A critical reflection on the participatory action process involved in the development of a cognitive-behavioural-based counselling intervention programme for youth living with HIV/AIDS in a rural South African town. Action Research, 10(1), 5–21.

 

McShane, K. E., Davey, C. J., Rouse, J., Usher, A. M., & Sullivan, S. (2015). Beyond Ethical Obligation to Research Dissemination: Conceptualizing Debriefing as a Form of Knowledge Transfer. Canadian Psychology; Ottawa, 56(1), 80–87.

 

Nicolaidis, C., Wahab, S., Trimble, J., Mejia, A., Mitchell, S. R., Raymaker, D., … Waters, A. S. (2013). The Interconnections Project: development and evaluation of a community-based depression program for African American violence survivors. Journal of General Internal Medicine, 28(4), 530–538.

 

Noorani, T., Charlesworth, A., Kite, A., & McDermont, M. (2017). Participatory Research and the Medicalization of Research Ethics Processes. Social & Legal Studies, 26(3), 378–400.