Participatory Health Research with Older People in the Netherlands: Navigating Power Imbalances Towards Mutually Transforming Power

  • Barbara C. GrootEmail author
  • Tineke A. Abma


Recently, policymakers intend to transform the welfare state to a ‘participation society’ in the Netherlands. This neo-liberal orientation is legitimized by the notion of ‘self-sufficiency’. Against this backdrop we sketch participatory health research (PHR) and its history, followed by the description of our own approach to PHR and principles of PHR encompassing three steps: (1) collecting experiences of the those whose life (or work) is the subject of the study as a starting point for mutual learning, (2) ongoing dialogue with different stakeholders which is strength-based and extending their horizons, and (3) collaborative action and monitoring outcomes. We focus on older people and historical/cultural differences between different generations which have implications for PHR and for addressing specific groups of older people. We present two examples: one concerning a group of older people in a residential setting and the other concerning a group of baby boomers in a WHO Age-Friendly City project.


Dialogue Relational empowerment Facilitation Power Older people Participatory health research 



We thank all co-researchers and other stakeholders who participated in the initiatives. We would also like to thank our co-facilitators and colleagues Vivianne Baur, Elena Bendien and Maaike Muntinga.


  1. Abma, T. A. (1998). Storytelling as inquiry in a mental hospital. Qualitative Health Research, 8(6), 821–838.CrossRefPubMedCentralGoogle Scholar
  2. Abma, T. A. (2003). Learning by telling storytelling workshops as an organizational learning intervention. Management Learning, 34(2), 221–240.CrossRefGoogle Scholar
  3. Abma, T. A. (2005a). Responsive evaluation in health promotion: Its value for ambiguous contexts. Health Promotion International, 20(4), 391–397.CrossRefPubMedCentralGoogle Scholar
  4. Abma, T. A. (2005b). Patient participation in health research: Research with and for people with spinal cord injuries. Qualitative Health Research, 15(10), 1310–1328.CrossRefPubMedCentralGoogle Scholar
  5. Abma, T. A., & Broerse, J. E. (2010). Patient participation as dialogue: Setting research agendas. Health Expectations, 13(2), 160–173.CrossRefPubMedCentralGoogle Scholar
  6. Abma, T. A., & Stake, R. E. (2001). Stake’s responsive evaluation: Core ideas and evolution. New Directions for Evaluation, 2001(92), 7–22.CrossRefGoogle Scholar
  7. Abma, T. A., & Widdershoven, G. A. (2005). Sharing stories narrative and dialogue in responsive nursing evaluation. Evaluation & the Health Professions, 28(1), 90–109.CrossRefGoogle Scholar
  8. Abma, T. A., & Widdershoven, G. A. (2006). Responsieve methodologie: Interactief onderzoek in de praktijk. Amsterdam: Lemma.Google Scholar
  9. Abma, T. A., Greene, J. C., Karlsson, O., et al. (2001). Dialogue on dialogue. Evaluation, 7(2), 164–180.CrossRefGoogle Scholar
  10. Baur, V. E. (2012). Participation & partnership: Developing the influence of older people in residential care homes. Doctoral dissertation, Free University.Google Scholar
  11. Baur, V., & Abma, T. (2012). ‘The Taste Buddies’: Participation and empowerment in a residential home for older people. Ageing and Society, 32(06), 1055–1078.CrossRefGoogle Scholar
  12. Baur, V. E., Abma, T. A., & Widdershoven, G. A. (2010). Participation of marginalized groups in evaluation: Mission impossible? Evaluation and Program Planning, 33(3), 238–245.CrossRefPubMedCentralGoogle Scholar
  13. Baur, V. E., Abma, T. A., Boelsma, F., & Woelders, S. (2013). Pioneering partnerships: Resident involvement from multiple perspectives. Journal of Aging Studies, 27(4), 358–367.CrossRefPubMedCentralGoogle Scholar
  14. Becker, H. A. (1992). Generaties en hun kansen. Amsterdam: Meulenhoff.Google Scholar
  15. Bindels, J., Baur, V., Cox, K., et al. (2014). Older people as co-researchers: A collaborative journey. Ageing and Society, 34(06), 951–973.CrossRefGoogle Scholar
  16. Boog, B. (2007). Handelingsonderzoek of action research. KWALON. Tijdschrift voor Kwalitatief Onderzoek, 12(1), 13–20.Google Scholar
  17. Bos, G. F. (2016). Antwoorden op andersheid: Over ontmoetingen tussen mensen met en zonder verstandelijke beperking in omgekeerde-integratiesettingen. Doctoral dissertation, Free University.Google Scholar
  18. Caron-Flinterman, J. F. (2005). A new voice in science: Patient participation in decision-making on biomedical research. Doctoral dissertation, Free University.Google Scholar
  19. Cooperrider, D. L., & Srivastva, S. (1987). Appreciative inquiry in organizational life. Research in Organizational Change and Development, 1(1), 129–169.Google Scholar
  20. Cooperrider, D., Whitney, D. D., & Stavros, J. M. (2008). The appreciative inquiry handbook: For leaders of change. Oakland: Berrett-Koehler Publishers.Google Scholar
  21. Dedding, C. (2009). Delen in mahct en onmacht, Kinderparticipatie in de (alledaagse) diabeteszorg. Doctoral dissertation, Free University.Google Scholar
  22. Diepstraten, I., Ester, P., & Vinken, H. (1999). Talkin’bout my generation. Netherlands Journal of Social Sciences, 35(2), 91–109.Google Scholar
  23. Elberse, J. E. (2012). Changing the health research system. Patient participation in health research. Doctoral dissertation, Free University.Google Scholar
  24. European Commission. (2014). National reform programme 2014 the Netherlands. Brussels: European Commission.Google Scholar
  25. European Commission. (2016). Stability programme of the Netherlands. Brussels: European Commission.Google Scholar
  26. Fortuyn, P. (1998). Babyboomers Autobiografie van een generatie. Houten: Bruna.Google Scholar
  27. Fricker, M. (2013). Epistemic justice as a condition of political freedom? Synthese 190(7), 1317–1332.Google Scholar
  28. Gergen, M. M., & Gergen, K. J. (2016). Playing with purpose: Adventures in performative social science. Abingdon: Routledge.CrossRefGoogle Scholar
  29. Groot, B. C. & Abma, T. A. (2018) Partnership, collaboration and power. In S. Banks & M. Brydon-Miller (2018) Ethics in participatory research for health and social well-being. Abingdon: Routledge.Google Scholar
  30. Grootegoed, E. M. (2013). Dignity of dependence: welfare state reform and the struggle for respect. Doctoral dissertation, University of Amsterdam.Google Scholar
  31. Guba, E. G., & Lincoln, Y. S. (1987) The countenances of fourth-generation evaluation: Description, judgment, and negotiation. In The politics of program evaluation (pp. 202–234) 15Google Scholar
  32. Haber, D. (2009). Gerontology: Adding an empowerment paradigm. Journal of Applied Gerontology, 28(3), 283–297.CrossRefGoogle Scholar
  33. Howe, N., & Strauss, W. (2007). The next 20 years. Harvard Business Review, 85, 41–52.PubMedPubMedCentralGoogle Scholar
  34. International Collaboration for Participatory Health Research (ICPHR). (2013a). Position paper 1: What is participatory health research? Version: May 2013. Berlin: International Collaboration for Participatory Health Research.Google Scholar
  35. International Collaboration for Participatory Health Research (ICPHR). (2013b). Position paper 2: Participatory health research: A guide to ethical principals and practice, Version: October 2013. Berlin: International Collaboration for Participatory Health Research.Google Scholar
  36. Jacobs, G. C. (2001). De paradox van kracht en kwetsbaarheid. Empowerment in feministische hulpverlening en humanistisch raadswerk. Doctoral dissertation, University of Humanistic.Google Scholar
  37. van Lieshout, F.. (2013). Taking action for action: A study of the interplay between contextual and facilitator characteristics in developing an effective workplace culture in a Dutch hospital setting, through action research. Doctoral dissertation, University of Ulster.Google Scholar
  38. van Lieshout, F., & Cardiff, S. (2011). Innovative ways of analysing data with practitioners as co-researchers. In D. Bridges, D. Horsfall, Higgs, et al. (Eds.)., (2011) Creative spaces for qualitative researching (pp. 223–234). Dordrecht: Sense Publishers.CrossRefGoogle Scholar
  39. Maarse, J. H., & Jeurissen, P. P. (2016). The policy and politics of the 2015 long-term care reform in the Netherlands. Health Policy, 120(3), 241–245.CrossRefPubMedCentralGoogle Scholar
  40. Melucci, A. (1996). Challenging codes: Collective action in the information age. New York: Cambridge University Press.CrossRefGoogle Scholar
  41. Nierse, C. J., & Abma, T. A. (2011). Developing voice and empowerment: The first step towards a broad consultation in research agenda setting. Journal of Intellectual Disability Research, 55(4), 411–421.CrossRefPubMedCentralGoogle Scholar
  42. Oguz, N. B., Gulru, Z. G., & Erme, K. (2015). Symbiosis of action research and deliberative democracy in the context of participatory constitution making. In Bradbury (Ed.), The SAGE handbook of action research. Los Angeles: SAGE.Google Scholar
  43. Rooke, D., & Torbert, W. R. (1998). Organizational transformation as a function of CEO's developmental stage. Organization Development Journal, 16(1), 11.Google Scholar
  44. Rooke, D., & Torbert, W. R. (2005). Seven transformations of leadership. Harvard Business Review, 83(4), 66–76.PubMedPubMedCentralGoogle Scholar
  45. Schipper, K. (2012). Patient participation & knowledge. Doctoral dissertation, Free University.Google Scholar
  46. Snoeren, M. (2015). Working= learning. Doctoral dissertation, Free University.Google Scholar
  47. Stake, R. E. (1975). To evaluate an arts program. In R. E. Stake (Ed.), Evaluating the arts in education: A responsive approach (pp. 13–31). Columbus: Merrill.Google Scholar
  48. Stake, R. E. (2004). Standards-based and responsive evaluation. Thousand Oaks: Sage.CrossRefGoogle Scholar
  49. Teunissen, G.J. (2014). Values and criteria of people with a chronic illness or disability: Strengthening the voice of their representatives in the health debate and the decision making process. Doctoral dissertation, Free University.Google Scholar
  50. Torbert, W. R. (2003). Personal and organisational transformations through action inquiry. London: The Cromwell Press.Google Scholar
  51. Torbert, W. R. (2004). Action inquiry: The secret of timely and transforming leadership. Oakland: Berrett-Koehler Publishers.Google Scholar
  52. Torbert, W. R., & Taylor, S. S. (2008). Action inquiry: Interweaving multiple qualities of attention for timely action. In Reason, P., & Bradbury, H. (Eds.). Handbook of action research: Participative inquiry and practice. Second edition. Sage: London.Google Scholar
  53. Torbert, W. R. (2013). Listening into the dark: An essay testing the validity and efficacy of collaborative developmental action inquiry for describing and encouraging transformations of self, society, and scientific inquiry. Integral Review: A Transdisciplinary & Transcultural Journal for New Thought, Research, & Praxis, 9(2).Google Scholar
  54. Van der Donk, C., & Van Lanen, B. (2012). Praktijkonderzoek in de school. Bussum: Coutinho.Google Scholar
  55. Vander Plaat, M. (1999). Locating the feminist scholar: Relational empowerment and social activism. Qualitative Health Research, 9(6), 773–785.CrossRefGoogle Scholar
  56. Weerman, A. (2016). Ervaringsdeskundige zorg- en dienstverleners: Stigma, verslaving & existentiële transformatie. Doctoral dissertation, Free University.Google Scholar
  57. Widdershoven, G. A. (2001). Dialogue in evaluation: A hermeneutic perspective. Evaluation, 7(2), 253–263.CrossRefGoogle Scholar
  58. Wiles, J. L., Leibing, A., Guberman, N., et al. (2012). The meaning of “aging in place” to older people. The Gerontologist, 52(3), 357–366.CrossRefPubMedCentralGoogle Scholar
  59. de Wit, M. P. T. (2014). Patient participation in rheumatology research: A four level responsive evaluation. Doctoral dissertation, Free University.Google Scholar
  60. de Wit, M., Abma, T. A., & Koelewijn-van Loon, M. (2013). Involving patient research partners has a significant impact on outcomes research: A responsive evaluation of the international OMERACT conferences. BMJ Open, 3(5), e002241.CrossRefPubMedCentralGoogle Scholar
  61. World Health Organization. (2007). Global age-friendly cities: A guide. Geneva: World Health Organization.Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Department Medical HumanitiesVU University Medical Centre, Amsterdam Public Health InstituteAmsterdamThe Netherlands

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