Publications

Death literacy is now an international area of public health palliative care research spanning community development, health services research, implementation science, policy, educationand evaluation. 

Since first conceptualising death literacy through the Caring at End of Life (CAEOL) research program, our work has focused on understanding, measuring and strengthening the skills, experiences, action and knowledge resources that enable people and communities to support dying, caregiving, grief and bereavement. 

Today, death literacy research is undertaken by universities, governments and health services across Australia, Europe, North America and Asia. 

Key publications

  • Noonan et al., (2016) Developing Death Literacy

  • Noonan et al. Progressing the Death Literacy Index: DLI-R and DLI-9.Palliative Care and Social Practice (2024).  

  • Leonard et al. Developing a Death Literacy Index.Death Studies (2022).  

  • Kerrie Noonan and Niki Read, Death literacy as community practice: Learning through Skills, Experience, Action, and Knowledge

Policy & practice uptake

  • DLI adopted within Australian Government Greater Choices Program evaluation.  

  • DLI used by PHNs, Local Health Districts and community organisations.  

International reach

  • Independent translations and validations in Australia, Sweden, Belgium, Netherlands, Japan, Ireland, Canada, Türkiye, China, USA and the UK.  

  • International PhD projects and collaborative research programs.  

  • International Death Literacy Network and biennial symposiums. 

Publications

  • Noonan, K., Grindrod, A., Shrestha, S., Lee, S., Leonard, R., & Johansson, T. (2024). Progressing the Death Literacy Index: The development of a revised version (DLI-R) and a short format (DLI-9). Palliative Care andSocial Practice, 18, 1–10.https://doi.org/10.1177/26323524241274806

  • Wibisono, S., Mavandadi, P., Wilkinson, S., Amiot, C., Forbat, L., Thomas, E. F., Allen, F., Decety, J., Noonan, K., Minto, K., Breen, L., Kho, M., Crane, M., Lissio-Wilson, M., & Louis, W. (2024). “More support, less distress?”: Examining the role of social norms in alleviating practitioners’ psychological distress in the context of assisted dying services. Death Studies, 1–12. https://doi.org/10.1080/07481187.2024.2337189

  • Noonan, K. (2024). Advance care planning: Making conversations count. In R. Ng Han Lip, D. Martina, C.-P. Lin, & M. Mori (Eds.), Advance care planning in the Asia Pacific (pp. 491-499). Singapore: World Scientific Publishing Company. 

  • Rosenberg, J., & Noonan, K. (2024). Patient and public involvement in palliative care. In R. Kitchen, C. Faull, S. Russell, & J. Wilson (Eds.), Handbook of palliative care (4th ed., pp. 16-24). Wiley. 

  • Mills, J., Abel, J., Kellehear, A., Noonan, K., Bollig, G., Grindrod, A., Hamzah, E., & Haberecht, J. (2024). The role and contribution of compassionate communities. The Lancet, 404(10448), 104–106. https://doi.org/10.1016/S0140-6736(23)02269-9

  • Light, E., Kerridge, I., Skowronski, G., Venkatesha, V., Krishnamurthy, A., Kuper, S., Noonan, K., Hoyle, P., Arnold, M., Manley, S., Stedman, W., & Sheahan, L. (2023). Clinician perspectives on voluntary assisted dying and willingness to be involved: A multisite, cross-sectional survey during implementation in New South Wales, Australia. Internal Medicine Journal. Advance online publication. https://doi.org/10.1111/imj.16305

  • Johansson, T., Olsson, Å., Tishelman, C., Noonan, K., Leonard, R., Eriksson, L. E., Goliath, I., & Cohen, J. (2023). Validation of a culturally adapted Swedish-language version of the Death Literacy Index. PLOS ONE, 18(11), e0295141. https://doi.org/10.1371/journal.pone.0295141

  • Lizzio-Wilson, M., Thomas, E. F., Louis, W. R., Crane, M. F., Kho, M., Molenberghs, P., Wibisono, S., Minto, K., Amiot, C. E., Decety, J., Breen, L. J., Noonan, K., Forbat, L., & Allen, F. (2023). Using latent profile analysis to understand health practitioners’ attitudes toward voluntary assisted dying. OMEGA – Journal of Death and Dying. Advance online publication. https://doi.org/10.1177/00302228221149453

  • Noonan, K., Rumbold, B., & Aoun, S. (2023). Compassionate community connectors: A distinct form of end-of-life volunteering. Progress in Palliative Care. Advance online publication. https://doi.org/10.1080/09699260.2022.2090051

  • Wibisono, S., Minto, K., Lizzio-Wilson, M., Thomas, E. F., Crane, M., Molenberghs, P., Kho, M., Amiot, C. E., Decety, J., Breen, L. J., Noonan, K., Forbat, L., & Louis, W. (2022). Attitudes toward and experience with assisted-death services and psychological implications for health practitioners: A narrative systematic review. OMEGA – Journal of Death and Dying. Advance online publication. https://doi.org/10.1177/00302228221138997

  • Aoun, S., Richmond, R., Gunton, K., Noonan, K., Abel, J., & Rumbold, B. (2022). The compassionate communities connectors model for end-of-life care: Implementation and evaluation. Palliative Care and Social Practice. Advance online publication. https://doi.org/10.1177/26323524221139655

  • Aoun, S. M., Richmond, R., Noonan, K., Gunton, K., & Rumbold, B. (2022). “The more you give, the better it is for you. You know the reward is greater than the effort”: The Compassionate Communities Connectors’ experience. Palliative Care and Social Practice. Advance online publication. https://doi.org/10.1177/26323524221139874

  • Noonan, K. (2022). Participatory relations. In J. Abel & A. Kellehear (Eds.), Oxford textbook for public health palliative care. Oxford University Press. 

  • Patel, M., & Noonan, K. (2022). Community development: Compassionate communities. In J. Abel & A. Kellehear (Eds.), Oxford textbook for public health palliative care. Oxford University Press. 

  • Aoun, S. M., Noonan, K., Thomas, G., & Rumbold, B. (2021). Traumatised, angry, abandoned but some empowered: A national survey of experiences of family caregivers bereaved by motor neurone disease. Palliative Care and Social Practice, 15, Article 26323524211038584. https://doi.org/10.1177/26323524211038584

  • Leonard, R., Noonan, K., Horsfall, D., Kelly, M., Rosenberg, J., Grindrod, A., Rumbold, B., & Rahn, A. (2021). Developing a death literacy index. Death Studies. Advance online publication. https://doi.org/10.1080/07481187.2021.1894268

  • Noonan, K. Sallnow, L. & Richardson, H. (2020) Ten years of public health palliative care conferences: a critical reflection for the next decade, Progress in Palliative Care, 28:2, 78-82, DOI: 10.1080/09699260.2019.1705540

  • Leonard R, Horsfall D, Rosenberg J, and Noonan, K. (2020) Carer experience of end-of-life service provision: a social network analysis’, BMJ Supportive and Palliative Care, 10(2). Doi: 10.1136/bmjspcare-2017-001344. 

  • Rosenberg, J., Horsfall, D., Leonard, R. and Noonan, K. (2018), ‘Informal care networks’ views of palliative care services: help or hindrance?’, Death Studies, vol 42, no 6, pp 362 – 370. 

  • Horsfall, D., Leonard, R., Rosenberg, J., & Noonan, K. (2018). People and place: Co-creating an ecology of care at end of life. In R. McManus, J. Cornwall, & S. Raudon (Eds.), Death down under: Twenty-first century dying, death, disposal and memorialisation in the Antipodes (pp. 164–174). Cambridge Scholars Publishing. 

  • Radermacher, H., Breen, L., Stancliffe, R., Noonan, K., & Allan, A. (2018). End-of-life care and choices: Roles for psychologists. Australian Psychologist, 53(1), 51–52. 

  • Horsfall, D., Leonard, R., Rosenberg, J., & Noonan, K. (2017). Home as a place of caring and wellbeing?: A qualitative study of informal carers and caring networks’ lived experiences of providing in-home end-of-life care. Health & Place, 46, 58–64. 

  • Leonard, R., Horsfall, D., Noonan, K., & Rosenberg, J. (2017). Identity and the end-of-life story: A role for psychologists. Australian Psychologist, 52(5), 346–353. 

  • Noonan, K., Horsfall, D., Leonard, R., & Rosenberg, J. (2016). Developing death literacy. Progress in Palliative Care, 24(1), 31–35. 

  • Horsfall, D., Leonard, R., Rosenberg, J., & Noonan, K. (2016). Understanding the space of the possible, rather than the space of the usual: End of life research using participatory visual methods. International Journal of Qualitative Methods, 15(1). 

  • Horsfall, D., Leonard, R., Rosenberg, J. P., & Noonan, K. (2019). People and place: Co-creating an ecology of care at end of life. In R. McManus, J. Cornwall, & S. Raudon (Eds.), Death down under: Twenty-first century dying, death, disposal and memorialisation in the Antipodes (pp. 164–174). Cambridge Scholars Publishing. 

Chapters

Noonan, K., & Read, N. (2026). Death literacy as community practice: Action-learning through skills, experience, action and knowledge. In Emma Hodges & Manjula Patel (Eds) Compassionate Communities in Action: Global Stories of Care, Loss and Connection. United Kingdom: Routledge, Chapman & Hall, Incorporated.

Noonan, K. (2024). Advance care planning: Making conversations count. In R. Ng Han Lip, D. Martina, C.-P. Lin, & M. Mori (Eds.), Advance care planning in the Asia Pacific (pp. 491-499). Singapore: World Scientific Publishing Company.

Rosenberg, J., & Noonan, K. (2024). Patient and public involvement in palliative care. In R. Kitchen, C. Faull, S. Russell, & J. Wilson (Eds.), Handbook of Palliative Care (4th ed., pp. 16-24). Hoboken, NJ. Wiley-Blackwell.

Noonan, K. (2022). Participatory relations. In J. Abel & A. Kellehear (Eds.), Oxford Textbook of Public Health Palliative Care. (pp. 95-102) Oxford, Oxford University Press.

Patel, M., & Noonan, K. (2022). Community development: Compassionate communities. In J. Abel & A. Kellehear (Eds.), Oxford Textbook of Public Health Palliative Care. (pp. 107-115). Oxford, Oxford University Press.

Horsfall, D., Leonard, R., Rosenberg, J. P., & Noonan, K. (2019). People and place: Co-creating an ecology of care at end of life. In R. McManus, J. Cornwall, & S. Raudon (Eds.), Death down under: Twenty-first century dying, death, disposal and memorialization in the Antipodes (pp. 164–174). UK, Cambridge Scholars Publishing.

In Preparation

 J. Abel, A Kellehear, K, Kortez-Miller & K Noonan (editors) Oxford Textbook of Public Health Palliative Care. Oxford, Oxford University Press. 2nd Edition.