The largest conversation around #griefliteracy is in the context of public health and the concept of “compassionate communities”.
The Public Health Model for Bereavement Support (Australia, 2012-2018)
Samar M. Aoun, Lauren J. Breen, Bruce Rumbold, Denise Howting,
Reported experiences of bereavement support in Western Australia: a pilot study, Australian and New Zealand Journal of Public Health, Volume 38, Issue 5, 2014, Pages 473-479, ISSN 1326-0200,
https://doi.org/10.1111/1753-6405.12177. (https://www.sciencedirect.com/science/article/pii/S1326020023022446)
Abstract:
Objective
This article describes the pilot testing of a community survey to ascertain the experiences and needs of people who were bereaved 6–24 months before the survey. The pilot study aimed to assess the feasibility and acceptability of the survey and test the theoretical public health model for bereavement support.
Methods
A postal survey was used to collect information from clients of three funeral providers in Western Australia in 2012.
Results
The findings confirmed the feasibility and acceptability of the survey questions. The analysis of the demographic characteristics, experience of bereavement and satisfaction with support revealed differential needs that align with the expectation of low, moderate and high risk, as articulated in the public health model.
Conclusions
The data provided tentative empirical support for the public health model of bereavement support. This is the first empirical test of this model nationally and internationally.
Implications
Considering the lack of evidence to guide development and allocation of bereavement programs in Australia, a larger survey will enable us to determine how the support needs of each of the three groups of bereaved people should be serviced. This is important for cost‐effective and equitable resource allocation.
Keywords: bereavement care; palliative care; family carers; health services; public health
Aoun SM, Breen LJ, Howting DA, Rumbold B, McNamara B, Hegney D. Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One. 2015 Mar 26;10(3):e0121101. doi: 10.1371/journal.pone.0121101. PMID: 25811912; PMCID: PMC4374848.
Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliative Medicine. 2018;32(8):1378-1388. doi:10.1177/0269216318774995
Aoun SM, Rumbold B, Howting D, Bolleter A, Breen LJ. Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. PLoS One. 2017 Oct 4;12(10):e0184750. doi: 10.1371/journal.pone.0184750. PMID: 28977013; PMCID: PMC5627900.
Followup studies to the 2014 Australian study
Serra E. Ivynian, Fiona Maccallum, Sungwon Chang, Lauren J. Breen, Jane L. Phillips, Meera Agar, Annmarie Hosie, Jennifer Tieman, Michelle DiGiacomo, Tim Luckett, Jennifer Philip, Ann Dadich, Christopher Grossman, Imelda Gilmore, Janeane Harlum, Irina Kinchin, Nicholas Glasgow & Elizabeth A. Lobb. (2024) Support needs of Australians bereaved during the COVID-19 pandemic: A cross-sectional survey study. PLOS ONE 19:6, pages e0304025.
#Griefliteracy – The call to action
Breen LJ, Kawashima D, Joy K, Cadell S, Roth D, Chow A, Macdonald ME. Grief literacy: A call to action for compassionate communities. Death Stud. 2022;46(2):425-433. doi: 10.1080/07481187.2020.1739780. Epub 2020 Mar 19. PMID: 32189580.
This is THE article where, “We develop the concept of Grief Literacy and present vignettes to illustrate a grief literate society. Grief literacy augments the concept of death literacy, thereby further enhancing the potential of the compassionate communities approach.”
Barros-Lane, L., Alvarez-Rodriguez, V., Cornelius, V. E., & Smith, V. D. (2024). “Grief Lasts Longer Than Sympathy”: Qualitatively Examining Disenfranchised Grief in Young Widowhood. Journal of Loss and Trauma, 1–22. https://doi.org/10.1080/15325024.2024.2324273
Bereavement care and public health
Lichtenthal WG, Roberts KE, Donovan LA, Breen LJ, Aoun SM, Connor SR, Rosa WE. Investing in bereavement care as a public health priority. Lancet Public Health. 2024 Apr;9(4):e270-e274. doi: 10.1016/S2468-2667(24)00030-6. Epub 2024 Mar 13. Erratum in: Lancet Public Health. 2024 May;9(5):e281. doi: 10.1016/S2468-2667(24)00077-X. PMID: 38492580; PMCID: PMC11110717.
Recently, Wendy Lichtenthal and others have argued that bereavement care is a public health issue (2024). They write, “Bereaved individuals are at increased risk for numerous adverse outcomes, including prolonged grief disorder, mood and anxiety disorders, existential distress, decreased work productivity, adverse health behaviors, neglect of health care, cancer, heart disease, suicide, and death.” (1).
They propose both institutional and community action. Institutions, particularly hospitals, who have provided support all the way up to the time of death have the opportunity to provide support of the bereaved after death as a way to mitigate the health implications of grief. Communities, as the places where people live, have the opportunity to provide support in a thoughtful, evidence-based, sustained way.
They cast a vision for “a bereavement-conscious workforce; grief-literate, compassionate communities; and health and social care systems that center bereavement as an inherent element of the duty to care.” WCL, et al. Lancet, 4.
Their opinion ends with this call: “The time is right to invest research and practice resources in both institutional and community-based models that re-humanize care and, ultimately, create safe and supportive settings for those who care.”
+++
Grief is a public health issue. Macdonald ME.Can J Public Health. 2024 Jun;115(3):367-370. doi: 10.17269/s41997-024-00898-2.PMID: 38727997 No abstract available.
Assessment tools
Sawyer, J. S., Wilner, L. L., & Ertl, M. M. (2021). Grief and bereavement beliefs among U. S. mental health professionals and the general public. Death Studies, 46(10), 2346–2353. https://doi.org/10.1080/07481187.2021.1944399
This team developed a questionnaire asking people what they believed about grief. Then they surveyed US mental health professionals and the general public.
Sawyer then used the same questionnaire in a study of college students.
Sawyer, J. S. (2024). Grief and bereavement beliefs and their associations with death anxiety and complicated grief in a U.S. college student sample. Death Studies, 1–12. https://doi.org/10.1080/07481187.2024.2349933
Religion and bereavement
Christian, K. M., Aoun, S. M., & Breen, L. J. (2018). How religious and spiritual beliefs explain prolonged grief disorder symptoms. Death Studies, 43(5), 316–323. https://doi.org/10.1080/07481187.2018.1469054
Sawyer, J. S., & Brewster, M. E. (2018). Assessing posttraumatic growth, complicated grief, and psychological distress in bereaved atheists and believers. Death Studies, 43(4), 224–234. https://doi.org/10.1080/07481187.2018.1446061
Cacciatore J, Thieleman K, Fretts R, Jackson LB. What is good grief support? Exploring the actors and actions in social support after traumatic grief. PLoS One. 2021 May 27;16(5):e0252324. doi: 10.1371/journal.pone.0252324. PMID: 34043716; PMCID: PMC8158955.
“There are four categories of social support defined in the literature that have been widely used over the past four decades. Structures and processes of social support, broadly speaking, include: 1) informational, 2) instrumental, 3) appraisal, and 4) emotional, all of which contribute to a sense of perceived and actual connection to a caring social system”
“Despite findings that perceived social support mitigates risk in bereaved individuals [47], a dearth of qualitative research exists in understanding the specifics of this supportive care [28]. This study seeks to more specifically define good grief support and related actions and actors in this process.”
“This cross sectional, qualitative descriptive (QD) study explored ways in which grieving individuals interpret and define social support and its actions and actors after the death of a child, parent, partner, or sibling in adults over the age of 18.”
372 respondants
“Findings highlight that many grievers experience dissatisfaction with social support from a variety of actors despite the increased need for support in bereavement and the high risk for poor emotional, mental, and physical outcomes. Just over one-third of the sample rated the level of social support they received post-loss as excellent or good, with 38% rating it as poor or very poor. Specific actors who provided good or excellent social support in more than 50% of the sample included animals, support groups, counselors or therapists, and friends, while the percentage was below 50% for family, faith leaders, colleagues, and community members.”
Working bibliography
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Reflections and Essays
Becoming Grief Literate, One Post at a Time — Grief Matters
When Grief Is Monetized: The Unauthorized Republishing of Obituaries — Grief Matters
Workplace Bereavement & People Leadership Blog | Bereave
https://www.linkedin.com/pulse/new-math-american-family-life-neal-k-shah-qqefe/
Harris, D. (2022). Political Grief. Illness, Crisis & Loss, 30(3), 572-589.
“Grief is usually understood as the personal response to loss. Thus, there is a tendency to consider grief as an individual experience, most typically related to the death of a loved one. However, recent research and theory have provided a much more complex picture of grief as a broad, interdimensional experience that can be both generated and experienced at micro, mezzo, and macro levels. In this context, consideration is given to grief that occurs as a result of events that take place at the sociopolitical level, which can be experienced both individually and collectively.”
Joanne Cacciatore, Joyal Mulheron. Small Acts of Compassion: What Current Evidence Does Not Measure. Ann Intern Med. [Epub 3 February 2026]. doi:10.7326/ANNALS-25-05352
Sangeeta Ahluwalia, Julia Bandini, Margaret Maglione, et al. Care of Bereaved Persons: A Systematic Review. Ann Intern Med. [Epub 3 February 2026]. doi:10.7326/ANNALS-24-03679
“Psychotherapy can improve key outcomes in bereaved adults, and expert-facilitated support groups and enhanced provider contact may also provide benefits. Evidence for other bereavement interventions, approaches for children, and outcomes beyond general grief or grieving, grief disorder, and depression symptoms is limited.”
1.
Aoun S, Ng YH, Auret K, Brose JM, Rumbold B. Shifting the aged care culture from caring “for” residents to caring “about” residents: Advocating for a compassionate communities approach to care. Palliative Care and Social Practice. 2026;20. doi:10.1177/26323524251413627
“This study makes three contributions to ageing policy discourse. First, it provides empirical evidence that despite policy directives towards person-centred care, residential aged care continues operating through institutional “caring for” rather than relational “caring about” frameworks. Second, it reveals implementation gaps in palliative care policies, particularly in bereavement support and family involvement in care decisions. Third, it proposes a compassionate communities approach to care as a social practice and policy framework addressing both quality concerns and sustainability challenges.”
Grief literacy helps us all. 