Care as collective work: Transforming public response to family caregiving through Participatory Action Research
Main Article Content
Abstract
This paper examines how public institutions, supported by university researchers in a facilitative role, can develop innovative responses to family caregivers’ needs through participatory action research. The experience led to the creation of the Caregiver Lab, not merely as a network connecting caregivers and the diverse organizations involved in their support, but as a reflective governance device and co-design arena. Through iterative cycles of listening, dialogue, and collective inquiry, the Lab enabled shared meaning-making, institutional learning, and the co-construction of concrete actions. The study highlights how collaborative infrastructures can address care-related complexity and strengthen democratic participation in welfare systems.
Keywords: family caregivers, participatory action research, local welfare, co-design
El cuidado como trabajo colectivo: transformar la respuesta pública a los cuidados familiares mediante la investigación-acción participativa
Este artículo examina cómo las instituciones públicas, con el apoyo de investigadores universitarios en un rol facilitador, pueden desarrollar respuestas innovadoras a las necesidades de los cuidadores familiares mediante la investigación-acción participativa. La experiencia dio lugar a la creación del Caregiver Lab, no solo como una red que conecta a los cuidadores con las diversas organizaciones implicadas en su apoyo, sino como un dispositivo de gobernanza reflexiva y un espacio de co-diseño. A través de ciclos iterativos de escucha, diálogo e indagación colectiva, el Lab favoreció la construcción compartida de significados, el aprendizaje institucional y la co-construcción de acciones concretas. El estudio pone de relieve cómo las infraestructuras colaborativas pueden afrontar la complejidad asociada al cuidado y fortalecer la participación democrática en los sistemas de bienestar.
Palabras clave: cuidadores familiares, investigación-acción participativa, bienestar local, co-diseño
Bibliography: Gambirasio, Maddalena/Scaratti, Giuseppe/Ruggeri, Giosuè: Care as collective work: Transforming public response to family caregiving through Participatory Action Research, IJAR – International Journal of Action Research, No. 3-2025, pp. 264-282.
Article Details
Literature
Addati, L., Cattaneo, U., Esquivel, V., & Valarino, I. (2018). Care Work and Care Jobs for the Future of Decent Work. International Labour Office. https://www.ilo.org/sites/default/files/wcmsp5/groups/public/%40dgreports/%40dcomm/%40publ/documents/publication/wcms_633135.pdf
Bongelli, R., Busilacchi, G., Pacifico, A., Fabiani, M., Guarascio, C., Sofritti, F., Lamura, G., & Santini, S. (2024). Caregiving burden, social support, and psychological well-being among family caregivers of older Italians: A cross-sectional study. Frontiers in Public Health, 12, 1474967. https://doi.org/10.3389/fpsyg.2024.1474967.
Bradbury, H. (Ed.). (2015). The SAGE handbook of action research (3rd ed.). SAGE Publication Ltd.
Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. (2011). Help wanted? Providing and paying for long-term care (OECD Health Policy Studies). OECD Publishing. https://doi.org/10.1787/9789264097759-en.
Costa, S., Leite, Â., Pinheiro, M., Pedras, S., & Pereira, M. G. (2020). Burden and quality of life in caregivers of patients with amputated diabetic foot. Psychology Journal, 9(5), 707 - 715. https://doi.org/10.1002/pchj.341.
Cunliffe, A. L. (2004). On becoming a critically reflexive practitioner. Journal of Management Education, 28(4), 407 - 426. https://doi.org/10.1177/1052562904264440.
Cunliffe, A. L. (2016). On becoming a critically reflexive practitioner redux: What does it mean to be reflexive? Journal of Management Education, 40(6), 740 - 746. https://doi.org/10.1177/1052562916668919.
Degiuli, F. (2010). The burden of long-term care: How Italian family caregivers become employers. Ageing & Society, 30, 755 - 777. https://doi.org/10.1017/S0144686X10000439.
Fricke, W., Greenwood, D.J., Larrea, M. & Streck, D. (2022). On Social Productivity and Future Perspectives on Action Research. International Journal of Action Research, 18(1), 8 - 27. https:// doi.org/10.3224/ijar.vl8il.03.
Fricker, M. (2007). Epistemic Injustice. Oxford University Press.
Frimann, S., Hersted, L., & Søbye, A. (2019). Action research in the perspective of becoming: The significance of reflexive dialogue. In L. Hersted, O. Ness, & S. Frimann (Eds.), Action research in a relational perspective: Dialogue, reflexivity, power and ethics (pp. 34 - 51). Routledge. https://doi. org/10.4324/9780429289408 - 3.
Gagliardi, C., Piccinini, F., Lamura, G., Casanova, G., Fabbietti, P., & Socci, M. (2022). The burden of caring for dependent older people and the resultant risk of depression in family primary caregivers in Italy. Sustainability, 14(6), 3375. https://doi.org/10.3390/su14063375.
Gambirasio, M., Toscano, A., Ivaldi, S., Scaratti, G. (2025). Toward beautiful and good research: crossing the production of generative knowledge. Qualitative Research in Organizations and Management.
Gergen, K. J. (2015). From mirroring to world-making: Research as future forming. Journal for the Theory of Social Behaviour, 45(3), 287 - 310. https://doi.org/10.1111/jtsb.12075.
Godrie, B., & Dos Santos M. (Eds.). (2017). Injustices épistémiques. Sociologie et Sociétés, 49(1). https://doi.org/10.7202/1042804ar.
Grundy, S. (1987). Curriculum: Product or praxis? The Falmer Press.
Hall, B. L., Tandon, R., & Tremblay, C. (2015). Strengthening community–university research partnerships: Global perspectives. University of Victoria & PRIA.
Heck, I. (2024). From Participatory Research to the Co-construction of Actions–Reflections on how to Reinforce Action Research for Social Inclusion. IJAR–International Journal of Action Research, 20(1), 50 - 68. https://doi.org/10.3224/ijar.v20i1.05?utm_source=chatgpt.com.
Holter, I. M., & Schwartz-Barcott, D. (1993). Action research: What is it? How has it been used and how can it be used in nursing? Journal of Advanced Nursing, 18(2), 298 - 304. https://doi.org/10.1046/j.1365-2648.1993.18020298.x.
Howard, M. (2024). Insider action research in palliative care – The challenges of implementing digital health in a hospice organisation in the UK. International Journal of Action Research, 20(1), 11 - 26. https://doi.org/10.3224/ijar.v20i1.03.
Israel, B. A., Schultz, 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, 173 - 202. https://doi.org/10.1146/annurev.publhealth.19.1.173.
Kjellström, S., & Mitchell, A. (2019). Health and healthcare as the context for participatory action research. Action Research, 17(4), 419 - 428. https://doi.org/10.1177/1476750319891468.
Kemmis, S., & McTaggart, R. (1988). The action research planner (3rd ed.). Deakin University Press.
Lamura, G., Mnich, E., Nolan, M., Wojszel, B., Krevers, B., Mestheneos, L., & Döhner, H. (2008). Family carers’ experiences using support services in Europe: Empirical evidence from the EUROFAMCARE study. The Gerontologist, 48(6), 752 - 771. https://doi.org/10.1093/geront/48.6.752.
Livne-Tarandach, R., & Bartunek, J. M. (2009). A new horizon for organizational change and development scholarship: Connecting planned and emergent change. In W. A. Pasmore, A. B. (Rami) Shani & R. W. Woodman (Eds.), Research in organizational change and development (Vol. 17, pp. 1 - 35). Emerald Group Publishing Limited. https://doi.org/10.1108/S0897-3016(2009)0000017005.
Noddings, N. (1984). Caring: A feminine approach to ethics and moral education. University of California Press.
Noddings, N. (2012). The language of care ethics. Knowledge Quest, 40(5), 52 - 56. https://www.proquest.com/scholarly-journals/language-care-ethics/docview/1032543737/se-2.
Olshansky, E., Sacco, D., Braxter, B., Dodge, P., Hughes, E., Ondeck, M., & Upvall, M. J. (2005). Participatory action research to understand and reduce health disparities. Nursing Outlook, 53(3), 121 - 126. https://doi.org/10.1016/j.outlook.2005.03.002.
Reason, P., & Bradbury, H. (2008). Concluding reflections: Whither action research. In P. Reason & H. Bradbury (Eds.), The SAGE handbook of action research: Participative inquiry and practice (2nd ed., pp. 695 - 707). SAGE.
Scaratti, G. (2009). The power of professionally situated practice analysis in redesigning organisations: A psychosociological approach. Journal of Workplace Learning, 21(7), 538 - 554. https://doi.org/10.1108/13665620910997685.
Scaratti, G. (Ed.). (2021). La ricerca qualitativa nelle organizzazioni: Pratiche di conoscenza situata e trasformativa. Raffaello Cortina Editore.
Schein, E. H. (2013). Humble inquiry: The gentle art of asking instead of telling. Berrett-Koehler Publishers.
Schön, D. A. (1983). The reflective practitioner: How professionals think in action. Basic Books.
Seymour-Rolls, K., & Hughes, I. (2000). Participatory action research: Getting the job done. Action Research E-Reports. http://www.fhs.usyd.edu.au/arow/arer/004.htm.
Shotter, J. (2010). Situated dialogic action research: Disclosing “beginnings” for innovative change in organizations. Organizational Research Methods, 13(2), 268 - 285. https://doi.org/10.1177/1094428109340347.
Speziale, H. J. S., & Carpenter, D. R. (Eds.). (2003). Qualitative research in nursing: Advancing the humanistic imperative (3rd ed.). Lippincott Williams & Wilkins.
Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge.
Tronto, J. C. (2013). Caring democracy: Markets, equality, and justice. NYU Press.
Varik, M., Medar, M., & Saks, K. (2021). Launching support groups for informal caregivers of people living with dementia within participatory action research. Action Research, 22(3), 205 - 222. https://doi.org/10.1177/1476750320903252.
Viscogliosi, C. (2024). Accompany caregivers to optimize learning with people living with a major neurocognitive disorder: A participatory action research. Educational Gerontology, 50(11), 1029 - 1044. https://doi.org/10.21203/rs.3.rs-2570515/v1.
Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(S1), S40–S46. https://doi.org/10.2105/AJPH.2009.184036.
Waterman, H., Tillen, D., Dickson, R., & de Koning, K. (2001). Action research: A systematic review and guidance for assessment. Health Technology Assessment, 5(23), 3 - 157. https://doi.org/10.3310/hta5230.
World Health Organization (WHO). (1978). Declaration of Alma-Ata. International Conference on Primary Health Care, Alma-Ata, USSR, 6 - 12 September 1978.