The art of supporting grief: have we lost it?

Grief support is core business: don’t outsource it as it is critical to effective holistic care.

• SVA Quarterly
• Organisational effectiveness

Listen to the podcast of SVA’s Emily Adams talk to Dr Kerrie Noonan from the Death Literacy Institute about the concept of disenfranchised grief and grief literacy.

Support for people experiencing loss and grief is often thought of as separate from other social services, but in reality, understanding grief and how best to support people through loss is critical to effective holistic care.

Grief is a universal human experience, but for people and communities already experiencing disadvantage, we see the ramifications of grief deepening social and economic disadvantage.

In this article, SVA’s Emily Adams and Dr Kerrie Noonan, Director of the Death Literacy Institute explore the impacts of grief, invite us to consider opportunities we might have to support those dealing with loss, and provide practical considerations and tips for delivering this support.

What is grief?

Grief is defined as the natural response to a loss. It is a deeply individual experience, and there is no right way to grieve. As such, it is widely accepted that grief does not follow an expected series of linear stages.

Grief also doesn’t happen in a vacuum. It is embedded in our unique personality, our past loss experiences, our family, culture and society. Though often thought of in relation to death, we can experience grief as a result of losing anything that is precious to us – a job, a relationship, or even a way of life.

The Covid-19 crisis has brought this into focus like never before. So many of us are working and living with fatigue and distress while being physically disconnected and socially isolated from support and care. It’s important to acknowledge that in the wake of Covid-19, we are seeing collective grief experienced across society, not only due to the direct loss of life, but also from the loss of opportunity, connection, intimacy and control. All of these experiences are losses.

… grief is universal, but the ramifications can be more severe for those already experiencing disadvantage.

Important to the conversation about grief is the concept of disenfranchised grief, or grief that is unacknowledged (see ‘Disenfranchised grief: when grief and grievers are unrecognised’). When losses are not acknowledged, perhaps because they are not viewed as legitimate by society, or because the loss experience is minimised through cultural norms, there is a risk that grief will be experienced as invalid and undervalued. Examples of disenfranchised grief can include death by suicide or the loss of a same-sex partner if the partnership was never made public. As these examples highlight, disenfranchised grief comes from loss that cannot be openly acknowledged or publicly mourned.

This begs the question – for those of us working in the social sector with people who have multiple loss experiences, how can we make sure we acknowledge grief appropriately?

First, it is important to acknowledge that grief is universal, but the ramifications can be more severe for those already experiencing disadvantage.

… the experience of being bereaved appears to contribute to structural vulnerability.

In the social sector, we are frequently working with people who are living with the consequences of loss and death. Though there is no way to anticipate how someone will process their grief, the ramifications of grief are often more severe for those already experiencing disadvantage, leading them to worse social, emotional, and financial outcomes.

For example, a single mum living in affordable housing, Dawn*, may be reliant on her mother for support in caring for her children while she is at work. When her mother dies, not only is she dealing with the loss of her mother, she is also faced with the prospect of unemployment and the subsequent inability to pay rent.

Next, we must acknowledge that the experience of being bereaved appears to contribute to structural vulnerability.

This article focuses on the concept and experiences of grief and will not seek to explicitly explore the complex topic of trauma.

Consider this – what is it like for a bereaved person trying to access social services after a death? What if this person was also trying to work, single parent three small children and re-negotiate the lease on their home? How many obstacles would they face trying to navigate burdensome processes, and would their grief be recognised by others as a contributing factor to their increasingly vulnerable state?

Bereavism: encountering social and structural inequity after a death

Recent research led by Western Sydney bereavement counsellor and researcher Kristin Bindley uses the term ‘bereavism’ to describe experiences of inequity that arise for bereaved individuals due to biases about grief and grieving that are embedded in social networks, organisations and formal institutions.

In practice, this may involve bereaved people encountering burdensome processes that are not responsive to their grief. For people who already experience disadvantage, there is also a risk that bereavement may not be identified as a significant period of the life course which can amplify existing issues, with providers not fully acknowledging the interrelated nature of vulnerabilities.¹

For instance, a bereaved carer with pre-existing mental health concerns is transitioned from a Bereavement Payment to JobSeeker in early bereavement. Not only is there a significant drop in the rate of payment, but this person may need to navigate exemptions from active participation in job seeking amid their grieving process. The systems this person is navigating are often blind to their grief and its implications. Interactions with providers may be solely focused on addressing practical consequences after caring (e.g. unemployment). This can lead to an isolating experience of disenfranchised grief which can amplify psychological distress and undermine mental health, as well as contributing to financial disadvantage and other forms of inequity.

As the above example highlights, vulnerability and disadvantage are layered, and grief is one of those layers that needs to be attended to.

We all have a role to play in grief support

All of us across the social sector have a role to play in providing grief support to our clients, our colleagues, and in our communities. Service providers across the sector have a unique opportunity to provide this support alongside their core services given their existing relationships with individuals and communities experiencing vulnerabilities that can amplify the ramifications of grief. Research on effective bereavement support emphasizes this point – informal networks and ‘everyday assets’, individuals with whom the bereaved are already in contact with, are often most impactful when it comes to grief support.^2 3

It’s important to acknowledge that in many cases this support is already happening – some aged care providers acknowledge the loss of older individuals when they lose their independence and/or their social connections to their communities; financial counsellors are supporting individuals through the loss of financial stability; and community housing providers acknowledge the loss associated with homelessness and housing instability.

Improving our grief literacy enables us to more fully address the complexity and uniqueness of living with grief.

Though this grief support is taking place both consciously and unconsciously in pockets across the sector, it is not yet universal practice. There are a number of reasons for this – some are system-level drivers, such as the systemic underfunding of aged care services, where organisations aren’t funded to adequately staff facilities. Other drivers relate to individuals’ belief in their ability to provide such support. In this article, we attempt to address the latter.

Improving grief literacy across the sector

Grief literacy has been defined as having the capacity to access, process, and use knowledge regarding the experience of loss.⁴ Improving our grief literacy enables us to more fully address the complexity and uniqueness of living with grief. Fundamental to grief literacy is a balanced understanding of both the protective and risk factors for an individual, enabling a practical approach to support.

The table below outlines some of the factors that have been identified:

Protective / helpful factors	Risk / vulnerability factors
Access to social and family support	Isolation from family/community
Open, non-judgmental, listening. No expectations around time frames for the grieving process	Expecting grief to follow a certain pattern. Providing support that isn’t flexible or acknowledges an individual’s unique process
Having a trauma informed service/approach: – Safe environment – Predictable	Loss not being acknowledged as a grieving process. Services repeating loss experiences through repeated referrals/inconsistent care or treating grief and normal grieving with medication
Staff are trauma informed and supported in a psychologically safe working environment. Staff feel able to report concerns. Loss and grief is normalised and supported	Staff feel unsafe. Staff are unable to speak up about their concerns. Staff have their own loss, grief and trauma that is not acknowledged or normalised

Increased grief literacy and support will improve holistic care

An increased understanding of how to support an individual or groups of individuals through loss is key to holistic care. The following two scenarios highlight the different approaches a service provider can take when engaging with someone who has experienced a loss:

Dawn*, the single mother of three children, has been living in an affordable housing complex for the last several years. Since Dawn’s divorce, her mother has helped care for the younger two children while Dawn works at a retail chain in the city.

Unexpectedly, her mum dies of a heart attack, leaving Dawn reeling from the loss. Not only is Dawn grieving the sudden loss of her mother, she is also forced to quit her casual role in retail to care for her two children. Quite quickly, Dawn finds herself in financial distress and is unable to make rent payments. Dawn approaches the housing provider, sharing that she has recently lost her mother and is facing increased financial distress.

Scenario 1 – An example of disenfranchised grief: Rather than acknowledge Dawn’s grief, the housing worker she speaks with focuses solely on her inability to pay the rent and highlights the risk of termination if she is in breach of their tenancy agreement.

Scenario 2 – An example of providing grief support alongside ‘business as usual’ services: The housing worker she’s put in touch with expresses how sorry she is that Dawn has experienced this loss. She asks her how she is doing, listens as Dawn shares her frustration and sadness at her current situation, and offers to put Dawn in touch with free financial counselling services that might be able to support her through this especially trying period.

Referral to a specialist bereavement service is often not needed and should not be the default approach.

The above scenarios highlight how service providers have an opportunity to provide grief support as part of their core services and the difference that change in approach can make. This support doesn’t have to be anything complex – in fact, it can often be quite simple. This includes ‘being there”, providing emotional support through conversation, listening, and supporting the appropriate connections.

Referral to a specialist bereavement service is often not needed and should not be the default approach. (Noting some situations require specialist support, such as those where symptoms interfere with a person’s functioning or cause significant emotional distress i.e. nightmares and panic symptoms).

Frontline workers should not minimise the role they have in providing holistic support. From our experience, people are often referred to a psychologist for concerns related to loss and grief, but many of these clients benefit greatly from their existing relationships – family, friends, work colleagues and care workers. It might feel daunting sometimes to support someone who is grieving. It is easy to feel inadequate or ill equipped for the task. But we would like to suggest that many of us already have what it takes to be a support or act as a companion to someone who is grieving. Listen deeply, invite people to share their stories, seek to understand their loss and why it mattered.

Key considerations and tips for those offering support

Firstly, it is important to note that there is no fix for grief. This can be challenging to those of us who are used to being solution oriented. Although there is no one solution when supporting someone experiencing loss, here we share some ideas that might help. These tips and considerations don’t just apply to front-line workers. It is equally important for boards, executive teams and organisation management to consider their roles in supporting employees, their organisations as a whole and clients (or the people they work with) through experiences of grief.

When supporting an individual or group of individuals:

• Consider your work through a lens of loss: It is important to first recognise that loss and grief might accompany the services that you provide. For example, if you’re working in an aged care context, consider the loss experienced by residents. They may be experiencing physical or cognitive losses that contributed to the move into residential care, but also have lost their home, their pets and perhaps even their long- standing social connections with family, friends and neighbours. There is also loss around privacy and intimate relationships.
• It’s ok to lean into the conversation about grief: When someone has experienced a loss, particularly a death, it is normal to feel worried that talking about the loss might make things worse. Avoidance can actually make isolation worse and increase discomfort. If in doubt, check. Acknowledge that you feel awkward or uncomfortable but that you have good intentions and are available if they ever want to speak.
• Challenge assumptions – for example don’t assume loss and grief equate only to sadness: There are a wide range of emotions and experiences related to loss and grief. It is often easier for us to acknowledge and notice the difficult ones that cause despair and pain. We rarely, however, talk about experiences that might be associated with relief or positive emotion. It is not uncommon, after the death of a partner, or someone they have cared for, for people to go on a long hoped for trip, reconnect with old friends or do things they had put aside while caring. Not all relationships are positive; some people experience freedom after a loss/death. Be open to all the emotions that may come up, even the positive ones. Be curious, and remember grief is more than the ‘5 stages’.
• Be prepared for delayed grief: Grief is a deeply vulnerable experience. Very often the emotions of grief are put on hold while people sort out practical issues like organising the funeral or dealing with the move to a care home. This is a common response, but it can be surprising and distressing when such strong emotions are experienced long after the initial losses or death. This is especially true for multiple losses. Consider a person who is concurrently living with the death of a spouse, dealing with an eviction, and job loss. It may not be until they are back in a stable housing situation that they begin to process the depth of change and loss. For service providers, this can mean initial feelings of relief may be followed by unexpected waves of grief and stress. This is often the time people will say ‘I was doing so well’ or ‘I have a house now, why am I feeling so terrible?’

When providing support at the organisation level:

• Consider your policies and procedures: Are there ways you can reduce the burden on bereaved people who are using your service? Can frontline workers use discretion? For example, information about benefits or financial support can be provided incrementally. Shorter and more frequent appointments can provide time and space when people are overwhelmed and grieving. The best case, of course, is when frontline workers can slow down and go at the pace people need, rather than the one the service prescribes.
• Prioritise your own loss and grief strategies for staff: Does your organisation have a strategy in place to address the loss and grief experiences of your staff? Do you have a bereavement leave policy? What about a carer policy? Can employees take time to care for a dying family member? While employee assistance programs (‘EAPs’) can be helpful in processing grief at the individual level, it’s important that there be strategies in place for an organisation to consider the role of loss and grief across the team. One example of this includes identifying peer supports in the workplace, someone or a group of individuals who can organise supportive actions and relay information between team members. This can normalise the collective support that occurs in a team environment.
• Consider death and grief literacy training: Depending on the services you and your organisation provide, it may be worth investing in professional development aimed at your team’s death and grief literacy. Being able to acknowledge our own losses, normalise the grief of others and act as a good listener are key to providing grief support. Training should bring to life existing knowledge and help develop practices that support grief within the context of the services you already deliver. We would argue that most of us in the social sector are ‘doing’ grief support, we just rarely call it that. Training can strengthen this in organisations.
• Consider how you might support/enable a communal grieving process: Grieving is a process rather than a moment in time, and a meaningful ritual or a group activity can be supportive for individuals, teams and the wider community. It does not need to be an elaborate or expensive activity; it can be as simple as lighting a candle together at a certain time. A collective ritual can be an important way to acknowledge and witness someone’s grieving process, helping them to feel connected to other people feeling the same way.

Final thoughts

At the end of the day, grief is a human experience that we all face at some stage, but for individuals and communities already experiencing disadvantage, the impacts can create a ripple effect of loss. All of us across the social sector, particularly service providers, have a unique opportunity to embed grief support in the delivery of our services, leading to better wellbeing outcomes and a more compassionate approach to care.

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Podcast: Listen to SVA’s Emily Adams talk to Dr Kerrie Noonan from the Death Literacy Institute about the concept of disenfranchised grief and grief literacy. They also explore some of the ways that employers and managers can support their staff to grieve.

Listen to the podcast

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For more information on grief and how to support yourself or others through the grieving process:

Death Literacy Institute – for information on grief and death literacy training

Australian Centre for Grief and Bereavement – for information about grief and loss, workshops and training.

Authors: Emily Adams and Dr Kerrie Noonan
Consultant: Kristin Bindley

Kerrie Noonan

Dr Kerrie Noonan is the director of the Death Literacy Institute. She is a clinical psychologist and an adjunct social researcher with the Caring at End of Life Research Group at Western Sydney University. Kerrie was the founding executive director of The GroundSwell Project and national initiatives such as Dying to Know Day, FilmLife Project, and ComComHub. Kerrie is working on initiatives that build grief and death literacy nationally and internationally. Contact: [email protected]

Kristin Bindley

Kristin Bindley possesses a background in social work with experience in practice, project management and research. She currently coordinates the bereavement service within Supportive & Palliative Care in Western Sydney Local Health District. Kristin is also completing PhD research at the University of Technology Sydney, on experiences of bereaved carers with social welfare needs related to income support and housing.

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Notes

*Based on client experiences

1 Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death, Bindley et al., 2019

2 Matching response to need: What makes social networks fit for providing bereavement support? Aoun et al., 2019,

3 Harnessing social support for bereavement now and beyond the Covid-19 pandemic, Breen, 2021

4 Grief literacy: A call to action for compassionate communities, Breen, et. al., 2020

5 Matching response to need: What makes social networks fit for providing bereavement support? Aoun et al., 2019

6 Harnessing social support for bereavement now and beyond the Covid-19 pandemic, Breen, 2021

7 End of Life at Home: Co-Creating an Ecology of Care, Horsfall, et al., 2015

8 How do employers respond to employees who return to the workplace after experiencing the death of a loved one? A review of the literature, Flux et al., 2019