For the penultimate blog in our Palliative Care and Public Health series, Samar Aoun asks what do we know about bereavement as it is lived out in everyday life?
Until fairly recently, we knew about the minority who sought support from professional services but not about the majority who did not seek such services, and therefore we paid less attention to the experience and resources the majority used to learn to live with their loss. Even mourning, which traditionally had been managed by shared social rituals, became regulated through interventions with professionals.
In 2015, we developed a Public Health Model for Bereavement Support (Figure 1), with a three-tiered approach which challenged some of this ‘received wisdom’ in the field and exposed the limitations of clinical services and validated community-based approaches to bereavement support (1). The population-based survey underpinning the model showed that, for most people, the bulk of the support that is effective comes from their informal networks, and that many have an ambivalent response to the professional support offered. The research we published in 2018 showed that the sources of informal support were most used by the bereaved and deemed most helpful because of the emotional bonds (attachment), the practical assistance (tangible alliance) and the perceived sense of belonging (social integration) (2).
The clear inference is that professional services need to work collaboratively in support of these informal networks if their contribution is to be appropriate and effective. Therefore, I can share some key learnings to ensure that families receive the support they need after a bereavement.
- The community needs to own its central role in end of life and bereavement care, with formal professionals advising, supporting and contributing as required.
- We need to support the ‘everyday assets’ in the community who care for the bereaved and who are already involved in the everyday lives of those who were caring and recently bereaved. These assets are family, friends, neighbours, work colleagues and funeral providers to name a few.
- Formal professionals may focus on emotional support, not understanding that emotional support is largely in place, and what clients need is strategic support to help them negotiate their changed world, not merely to adjust their emotions.
- Formal professionals need to remember that they are being consulted not to deal with grief as a separate event, but as one aspect of a tangible, multi-dimensional loss with which that bereaved person has to live.
In summary, informal bereavement support is the “bedrock” with formal services supplementing this support.
Even during the COVID-19 pandemic, public health strategies like Compassionate Communities retained their value and developed new approaches when face-to-face encounters were minimal and physical means for support were limited. Somewhat paradoxically, the loss of opportunities to say farewell itself became a different source of social connection as people posted their accounts on social media and supported each other in sharing their wishes about what might have been (3). Therefore, many of the projections of increased complicated grief may over-estimate the importance of professional support, and correspondingly under-estimate what family, friends and neighbours can provide.
Overall, empirical indicators and directions encourage a Compassionate Community approach to future bereavement support practice and policy, and these findings are now influencing practice and policy in several countries (Figure 1). The task for both formal and informal services is to be alert to the operational narrative of a family or social network and to support them, if needs be, to expand or enrich that narrative. This can be undertaken by enhancing a social network in a Compassionate Community model of care, by introducing additional members who can offer different perspectives and approaches. Improving grief literacy, in terms of skills and knowledge to support the bereaved, is vital for informal networks to be effective: recognising grief, knowing how to find quality information, being cognisant of warning signs of more complex matters, careful listening that supports comments and questions with the potential to broaden perspective, knowing how to ask questions in a sensitive manner and how to help the bereaved find resources.
With COVID-19’s sharp focus on death, dying, loss and grief, there is an opportunity to improve death literacy within the community enabling more preparedness and ability to die at home, if it is in line with people’s wishes, and also to improve grief literacy, meaning supporting better community understanding, recognition of grief and help-seeking to support the bereaved.
References
1.Aoun SM, Breen L, Howting D, Rumbold B, McNamara B, Hegney D (2015). Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One; 10(3): e0121101.
2.Aoun SM. Breen LJ, White I, Rumbold B, Kellehear A. (2018). What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the Compassionate Communities approach. Palliative Medicine 32(8) 1378–1388 DOI: 10.1177/0269216318774995
3.Lowe J, Rumbold B, Aoun SM (2020). Memorialisation during COVID-19: implications for the bereaved, service providers and policy makers. Palliative Care and Social Practice. DOI: 10.1177/ 2632352420980456
Links and resources
- Find out more about the EAPC Reference Group on Public Health and Palliative Care.
- Read more about Public Health and Palliative Care on the EAPC blog.
- The End-Of-Life Care research group is hosting the 7th international Public Health Palliative Care International conference ‘Democratizing caring, dying and grieving: participation, action, understanding and evaluation’. Bruges, Belgium, 20 – 23 September 2022. Find out more here.
- The End-Of-Life Care research group Public Health & Palliative Care Research Summer School is taking place on 14 to 17 September 2022, in Ghent, Belgium.
About the author
Professor Samar Aoun is Perron Institute Research Chair in Palliative Care at the University of Western Australia and Perron Institute and Adjunct Professor, La Trobe University. She is also Chair of the South West Compassionate Communities Network. Orcid no: 0000-0002-4073-4805.
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