Skip to main content
SpringerLink
Log in

Ethics and Participatory Health Research

  • Reference work entry
  • First Online:
Handbook of Social Inclusion

  • 88 Accesses

Abstract

Participatory Health Research (PHR) and related participatory action research approaches share the normative ideals of transformation, social justice, and inclusion. PHR researchers seek, together with people who are involved in an issue, to make a difference and improve local situations. Ethics is at the core of this type of inclusive research. This means not simply “doing ethics” by submitting a proposal to an Ethics Commission Board, but is an integral part of what participatory researchers do. It means practicing research in an inclusive and democratic way and fostering mutual learning and collective action (process), with the aim to bring about social justice and social inclusion (outcome). PHR involves people who are not usually involved in research, which creates daily situations in which ethical issues may arise, such as who decides, who participates, who is excluded, what does it mean to share power equally, or whose knowledge counts. Ethics is, therefore, more than following procedures about informed consent and privacy and relates to everyday ethical issues, and relational and moral complexity. This chapter introduces the context of ethics in PHR, ethical guidelines for PHR, and the concept of ethics work in PHR. Ethics work entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethical issues often relate to power differentials, partnership, and collaboration in inclusive research. Reflection on ethics in PHR, in collaboration with those who are subject of the ethical issue, is a pathway towards ethical PHR.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 1,099.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 1,199.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Abma, T. A. (1998). Storytelling as inquiry in a mental hospital. Qualitative Health Research, 8(6), 821–838.

    Google Scholar 

  • Abma, T. A. (2020). Ethics work for good participatory action research. Beleidsonderzoek Online. https://doi.org/10.5553/BO/221335502020000006001.

  • Abma, T. A., Banks, S., Cook, T., Dias, S., Madson, W., Springett, J., & Wright, M. (2019a). Participatory research for health and social Well-being. Cham: Springer Nature.

    Book  Google Scholar 

  • Abma, T. A., Groot, B. C., & Widdershoven, G. (2019b). The ethics of public and service user involvement in health research: The need for participatory reflection on everyday ethical issues. The American Journal of Bioethics, 19(8), 23–25.

    Article  Google Scholar 

  • Banks, S. (2016). Everyday ethics in professional life: Social work as ethics work. Ethics and Social Welfare, 10(1), 35–52.

    Article  Google Scholar 

  • Banks, S., & Brydon-Miller, M. (2019). Ethics in participatory research for health and social well-being: Cases and commentaries. Abingdon: Routledge.

    Google Scholar 

  • Banks, S., Armstrong, A., Carter, K., Graham, H., Hayward, P., Henry, A., Holland, T., Holmes, C., Lee, A., McNulty, A., Moore, N., Nayling, N., Stokoe, A., & Strachan, A. (2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8(3), 263–277.

    Article  Google Scholar 

  • Bendien, E., Groot, B., & Abma, T. (2020). Circles of impacts within and beyond participatory action research with older people. Ageing and Society, 1–21. https://doi.org/10.1017/S0144686X20001336.

  • Bradbury, H. (Ed.). (2015). The Sage handbook of action research. London: Sage.

    Google Scholar 

  • Brannelly, T. (2018). An ethics of care research manifesto. International Journal of Care and Caring, 2(3), 367–378.

    Article  Google Scholar 

  • Brydon-Miller, M. (2008). Ethics and action research: Deepening our commitment to principles of social justice and redefining systems of democratic practice. In P. Reason & H. Bradbury (Eds.), The SAGE handbook of action research: Participative inquiry and practice (Vol. 2, pp. 199–210). New York: SAGE.

    Chapter  Google Scholar 

  • Carel, H. H., & Kidd, I. J. (2014). Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy, 17(4), 529–540.

    Article  Google Scholar 

  • Centrum voor Cliëntervaringen. (2020). Website. http://www.centrumvoorclientervaringen.com. Accessed on 12 Nov 2020.

  • Crichton, P., Carel, H., & Kidd, I. J. (2017). Epistemic injustice in psychiatry. BJPsych Bulletin, 41(2), 65–70.

    Article  Google Scholar 

  • CSJCA (Centre for Social Justice and Community Action). (2015). Dilemmas Cafés: A guide for facilitators. Retrieved from https://ukprn.weebly.com/uploads/5/7/5/1/57517787/dilemmas_cafes__a_guide_for_facilitators.pdf on 01 Jan 2020.

  • Fisher, B., & Tronto, J. (1990). Toward a feminist theory of caring. Circles of care: Work and identity in women’s lives. In E. K. Abel, M. K. Nelson, & M. K. Nelson (Eds.), Circles of care: Work and identity in women's lives (pp. 35–62). New York: SUNY Press.

    Google Scholar 

  • Fouché, C. B., & Chubb, L. A. (2017). Action researchers encountering ethical review: A literature synthesis on challenges and strategies. Educational Action Research, 25(1), 23–34.

    Article  Google Scholar 

  • Fricker, M. (2009). Epistemic injustice: Power and the ethics of knowing. New York: Oxford University Press.

    Google Scholar 

  • Fricker, M. (2013). Epistemic justice as a condition of political freedom? Synthese, 190(7), 1317–1332.

    Article  Google Scholar 

  • Groot, B. C. (2021). Ethics of Participatory Health Research: reflections on roles and responsibilities. Insights from a reflective journey. Dissertation, VU University.

    Google Scholar 

  • Groot, B. C., & Abma, T. A. (2020). Participatory Health Research with mothers living in poverty in the Netherlands: Pathways and challenges to strengthen empowerment. FQS / Forum: Qualitative Social Research, 21(1), 8.

    Google Scholar 

  • Groot, B. C., Vink, M., Haveman, A., Huberts, M., Schout, G., & Abma, T. A. (2019a). Ethics of care in participatory health research: Mutual responsibility in collaboration with co-researchers. Educational Action Research, 27(2), 286–302.

    Google Scholar 

  • Groot, B., Vink, M., Schout, G., & Abma, T. (2019b). Pathways for improvement of care in psychiatric crisis: A plea for the co-creation with service users and ethics of care. Archives Of Psychology, 3(3). Retrieved from https://archivesofpsychology.org/index.php/aop/article/view/99

  • Groot, B. C., Weerman, A., Overbeek, F., & Abma, T. A. (2020a). Making a difference: Participatory health research with unemployed citizens and policymakers. International Review of Qualitative Research, 13(2), 200–218.

    Google Scholar 

  • Groot, B., Haveman, A., & Abma, T. (2020b). Relational, ethically sound co-production in mental health care research: Epistemic injustice and the need for an ethics of care. Critical Public Health, 1–11. https://doi.org/10.1080/09581596.2020.1770694.

  • Guillemin, M., & Gillam, L. (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 10(2), 261–280.

    Article  Google Scholar 

  • Guta, A. (2019). Institutional ethical review processes. In S. Banks & M. Brydon-Miller (Eds.), Ethics in participatory research for health and social wellbeing (pp. 179–204). Abingdon: Routledge.

    Google Scholar 

  • ICPHR (International Collaboration for Participatory Health Research). (2013). Position paper 2: Participatory health research: A guide to ethical principals and practice (Version October 2013). Berlin: ICPHR.

    Google Scholar 

  • Kemmis, S. (2008). Critical theory and participatory action research. In P. Reason & H. Bradbury (Eds.), The SAGE handbook of action research: Participative inquiry and practice (Vol. 2, p. xx). New York: SAGE.

    Google Scholar 

  • Reason, P., & Bradbury, H. (Eds.). (2001). The SAGE handbook of action research: Participative inquiry and practice (Vol. 2). New York: SAGE.

    Google Scholar 

  • Sennett, R. (2008). The craftsman. Yale: Yale University Press.

    Google Scholar 

  • Tronto, J. C. (2013). Caring democracy: Markets, equality, and justice. New York: New York University Press.

    Google Scholar 

  • Wallerstein, N., Duran, B., Oetzel, J. G., & Minkler, M. (Eds.). (2017). Community-based participatory research for health: Advancing social and health equity. Hoboken: Wiley.

    Google Scholar 

  • Woelders, S. (2020). Power-full patient participation. Opening spaces for silenced knowledge. Disseration, VU University.

    Google Scholar 

  • Wright, M., & Kongrats, K. (Eds.). (2018). Participatory health research: Voices from around the world. Puducherry: Springer.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Amsterdam UMC, Amsterdam Institute of Public Health, Amsterdam & Leyden Academy on Vitality & Ageing, Leiden, The Netherlands

    Barbara C. Groot & Tineke A. Abma

Authors
  1. Barbara C. Groot
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Tineke A. Abma
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Barbara C. Groot .

Editor information

Editors and Affiliations

  1. College of Health Sciences, VinUniversity, Hanoi, Vietnam

    Pranee Liamputtong

Rights and permissions

Reprints and permissions

Copyright information

© 2022 Springer Nature Switzerland AG

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

Groot, B.C., Abma, T.A. (2022). Ethics and Participatory Health Research. In: Liamputtong, P. (eds) Handbook of Social Inclusion. Springer, Cham. https://doi.org/10.1007/978-3-030-89594-5_30

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-89594-5_30

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-89593-8

  • Online ISBN: 978-3-030-89594-5

  • eBook Packages: MedicineReference Module Medicine

Publish with us

Policies and ethics

Search

Navigation