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Mourning Lost Rituals

Part 1: How Covid-19 changed the way we grieve

Mourning Lost Rituals - Part 1: How Covid-19 Changed the Way We Grieve
The trauma and loss of the last year and a half have been numbing in their collective scale but remain a deeply personal and isolating experience. We take a look at the types of grief that have emerged from this pandemic.
E
ach time Mick Todd goes to the house to clear out some of his parents’ belongings, he says “hello” to them. It has been the Yorkshireman's way of saying goodbye. After losing both parents and two aunts in the space of three weeks due to Covid-19, it is no surprise that he has been “treading water” ever since the first UK lockdown in March 2020.

Todd, who owns Pontefract Squash & Leisure Club in West Yorkshire, first lost his 85-year-old mother in April of 2020. Twenty-four days later his father died due to Covid complications. They had been married for over 60 years.

To compound matters, within a week of his parents dying, he then lost his aunts in the space of a fortnight. “It has been impossible and horrendous regarding the Covid restrictions on funerals,” he says.

Todd, a well-known business figure in the market town, was present at the double funeral for his parents. In all, he has been to eight funerals during lockdowns in the UK. He says that the rule of six limit at the crematorium meant many people in the community were standing outside for his own parents’ funeral, with the speakers not allowed to be turned on. “We couldn’t really say our goodbyes,” he adds.

No-one could have imagined the isolation in which millions of people in the UK would be expected to cope with grief and bereavement through 2020 and into 2021. Even for those without recent losses, lockdown created a vacuum in which grief – new or unresolved – rose to the surface.

To put this into perspective, the six digit numbers quoted in daily press briefings, and the red line that climbed ever upwards to the right in daily graphs equate to the most excess deaths in the UK since World War Two.

Grief is deeply personal and in the isolation of lockdown it has become deeply lonely as traditions and rituals for mourning have disappeared.

We talk with two grief and bereavement specialists at ProblemShared, Joyce Howitt and Susan Cappaert, to draw on their experience and take a look at what has emerged in related areas of research and ways to move forward.

Lost Grief Rituals

In a national survey of people bereaved in 2020, 94% said they had had to restrict funeral arrangements. Simply put, Covid-19 has changed the way we have mourned and the restrictions of the pandemic have made bereavement ever more stressful and painful.

Susan Cappaert said that this had been heartbreaking for her clients: “It has caused a lot of anger, frustration and confusion." Like so much else in this pandemic, an experience that has been so restricted that it feels watered down or token in gesture cancels out some of the benefit of being able to participate at all.

Article image

What Makes This So Much Harder To Bear?

In some ways, the answer to this question seems obvious to our collective understanding of what has unfolded over 2020 and 2021.

The particular mix of suffering that has unfolded means that the grief which follows is likely to be complicated at a level that may be hard to shift.

Factors that complicate grief in this pandemic are myriad and have trauma, shock, a void of control or self-directed choices, and a lack of resolution in the mix.

As Susan Cappaert says, “For many bereaved, there is constant worry about someone dying alone and the only connection they had to their loved one was a daily phone call to the hospital for an update."

As Joyce Howitt says,

"Even the most basic action - touch - has been lost."

Contact with those who are ill in hospital has not been possible; it is impersonal - often reduced to as little as the sharing by healthcare workers of a patient's stats and numbers - the "obs" of interval monitoring in a hospital ward (the observations of a patient's vital signs), and as reiterated in various research, this is partly because of the time pressures on hospital staff and care providers, partly because of the pressure on resources, but also because there is little other means of contact available to gauge matters given the physical impediments of PPE gear and ventilators. This means that there has been no opportunity for those bereaved to bear witness themselves and prepare for the inevitable, nor has there been an opportunity to give comfort to the loved one or resolve any unresolved aspects to that relationship.

Article image

The associations the bereaved may have with their loved one's physical struggle with Covid-19 can also play a role in exacerbating grief and other responses - for example the worries about a patient not breathing peacefully or dying while intubated.

"Bereavement care fell to a wide range of staff members, including some with limited experience or training in supporting bereaved people who had to rapidly develop the required communication skills," a survey of bereavement care found this year.

And then there is the added weight of conscience in accepting that there are limitations for those working the back-breaking hours in hospitals to deliver care in order to save lives in the face of what were mounting death tolls. It is a situation in which it can be hard to find an appropriate target or place to direct the anger, confusion, and lack of control that follows bereavement in these circumstances since everyone is trying their hardest.

Setting this against the backdrop of millions of people isolating at home for so much of last year and into this year, with limited social contact and restricted physical engagement with the outside world, it is a very particular context that gives rise to such intense grief.

Grief Can Be Different The World Over And That World Is Right Next Door

Although first-hand accounts of bereavement and the restrictions to our grief rituals have been played out in the media on an almost daily basis, the impact of varying cultural & religious sensitivities to bereavement is less talked about. There can be different cultural & religious emphases with regard to how to honour the departed, the number of mourners, the duration of the proper mourning period, traditions in the displays of grief and outpouring of emotion, and the rituals of the attendant physical bodily rites. Lockdown has been ever more compromising of the mourners' perceptions and hopes for the departed's journey onwards.

Another aspect to the cultural context is that the community in the U.K. which has suffered most disproportionately in terms of rate of bereavement has been the BAME communities. That these communities' share of loss is higher is in part due to the close-knit settings of extended family life in such communities which underlines the further fracturing of this community.

These communities are also broadly more likely to be involved in frontline "key worker" roles which cannot be done from home, especially with respect to healthcare. As reported in a study last year "One country, two crises", BAME groups number 44% of medical staff and 20% of nursing staff and it is these jobs where risk of infection was greatest. The first 11 doctors to die in the UK were from BAME communities.

A wider number of kin can also be affected by bereavement, due to the larger family size of BAME communities, as attested to by a study out of the United States. Those undertaking the national UK study on bereavement have also pointed out that one of their primary goals is to understand better bereavement across all population groups in order to provide more equitable bereavement support to those groups.

Understanding Different Types Of Grief As A Roadmap For Healing

The human ripple effect of bereavement means that there were at a minimum close to 4 million people bereaved in the UK on the anniversary of the first lockdown earlier this year in March, regardless of cause. The same bereavement study out of the United States that looked at differentiated weighting for different population groups put the multiplier for bereaved as high as 8 - 9 kin for every death based on factors specific to the ages of those who have died during the pandemic, being on average older and leaving behind several generations of family. This is well north of the usual bereavement multiplier of 5 kin, putting the number of bereaved well in excess of 4 million.

Article image

“Grief is an extremely powerful emotion; it is painful and exhausting in ‘normal times’, let alone this last year", says Susan Cappaert.

There are various psychological models of grief and schools of thought about processes that someone goes through in order to heal. Even usual uncomplicated grief cannot be easily boxed into a tick box of symptoms or experience. There is "wide diversity in the timing, expression and intensity across population groups and within families".

One of the biggest barriers for neurodivergent people entering the workforce is non-inclusive interviews.Interviews typically place an emphasis on conversational ability, social skills and body language. neurodivergent candidates often show differences in these areas and so reasonable adjustments need to be considered to give them a fair chance so reasonable adjustments need to be considered to give them a fair chance.

Organisations can get ahead of the curve by adopting an inclusive approach to neurodiversity from the beginning. Here are some tips to help your company to conduct more inclusive interviews to support the neurodiverse workforce.

Before the interview

To help candidates prepare and set themselves up for success before the interview starts, here are some things to consider:

  • Provide clear directions to the interview, including photographs of streets and transport stations.
  • Provide clear instructions on how to get into the building and where they need to go when they arrive.
  • Share any interview questions in advance and allow them to bring reminder notes.
  • Allow adequate time for replies during the interview.
  • Let them know the name and job role of anyone they’ll be meeting during the interview beforehand.
  • Provide a timetable for what will happen in the interview. For example, ‘we’ll spend the first ten minutes talking about you, then spend ten minutes talking about your technical experience’.
  • If possible, provide access to a quiet space where your candidate can avoid auditory, visual, or social stimulation before and after the interview if required.
  • Ask your candidate if they’d like to be accompanied by someone they know during the interview.
  • Ask about communication preferences. Some people might prefer to support their spoken language with the option to write for example.

The right environment

Neurodivergent people often experience sensory issues. They may be distracted by noise, lights, and the surrounding environment, so if you’re hosting an in-person interview, it may be beneficial to ensure the interview room is as distraction-free as possible.

Here are some suggestions for getting the setting right:

  • Provide a notebook in case your candidate wants to make notes. This can help them organise their thoughts when giving detailed answers.
  • Invite them to move around during the interview, or factor in short breaks, if your candidate finds it difficult to sit still for periods of time.
  • Don’t expect eye contact. Neurodivergent individuals may find this uncomfortable, or it may impact their concentration.
  • If possible, provide fidget toys or stress balls to reassure your candidate by making them feel more comfortable and to reassure them that you are neuro-inclusive company.

Fair Questions

Neurodivergent candidates may struggle with open-ended and hypothetical questions, and with switching between formal and informal tones. It may also take them longer to process questions. Quick thinkers can talk rapidly and get distracted, so they may stray off topic.  

Here are some suggestions when preparing interview questions for neurodivergent candidates:

  • Be specific with your questions. For example, ‘what information governance processes did you use in your last job?’ may elicit a better response than, ‘what would you do to look after people’s data?’
  • Consider asking focused questions rather than generalised ones. For example, ask for specific examples instead of saying ‘can you give more detail?’  
  • Be prepared to accept literal responses. For example, if you ask, ‘how did you approach your last role?’ you may get a literal answer like, ‘by bus and then I walked.’
  • Try to avoid long questions that contain multiple clauses. Your candidate may have difficulty focusing and waiting for the question to be finished, especially if they struggle with processing information.
  • Multiple choice and psychometric tests can be discriminatory. It’s much more beneficial to provide an alternative style of assessment.
  • For written tasks at interview, 25% extra time is a reasonable accommodation to allow for processing and answering questions.
  • Be prepared to prompt your candidate or repeat your question if you need more information, and let them know when you have enough information.
  • Ask the candidate if they would like any reasonable adjustments for their interview.  

Considering neurodivergent jobseekers is a shift away from old-fashioned thinking, where the interview process was mainly designed with ‘neurotypical’ candidates in mind. It’s important to understand bias and be aware that we can all function in different ways, and that performance in an interview does not necessarily reflect on how a person will perform in the role.

To make sure you retain your neurodivergent talent it will be necessary to apply these principles throughout the onboarding and retainment process too. Make sure your workplace is neuro-inclusive by offering continued support from the beginning of their contracted time with you, as well as beforehand during the interview process. This should include additional support for the individual through any required assistive technology, workplace adjustments, and by making sure that all your staff are aware of and understandneurodiversity and have inclusive attitudes from the start.

Sensory Sensitivities

Autistic children may have varying degrees of sensory sensitivities to their environment especially when it comes to structured environments such as school or college. Loud noises, unpleasant smells and bright lights can be over whelming for them, often leading to exhaustion which can trigger further anxious feelings about their performance in the classroom.

Changes in routine

There are multiple transitions in a child’s day that could bring on anxiety, examples can include changing out of pyjamas into school uniform, changing classrooms frequently throughout the day and transitioning from work to leisure mode at break times and home-time.

Socialising

The pressures of fitting-in and being socially accepted can be challenging for a young autistic individual. Lack of structure in the playground and pressure to join in with small talk can make breaktimes the most dreaded part of the day.    

Autistic children are more vulnerable to bullying, often learning to mask at an early age in order to appear ‘normal’. This can cause extreme anxiety for anticipation of bullying and can in turn take its toll on mental health and well-being.  

Self esteem

Feelings of failure about not reaching expected norms and potential can have a very detrimental effect on an autistic child’s self-esteem and exasperate performance anxiety. Being told to ‘concentrate’, ‘try harder’ and ‘overcome challenges’, that are part of a child’s autistic identity can be a burden and effect feelings of self-worth.  

Todd, who owns Pontefract Squash & Leisure Club in West Yorkshire, first lost his 85-year-old mother in April of 2020. Twenty-four days later his father died due to Covid complications. They had been married for over 60 years.

To compound matters, within a week of his parents dying, he then lost his aunts in the space of a fortnight. “It has been impossible and horrendous regarding the Covid restrictions on funerals,” he says.

Todd, a well-known business figure in the market town, was present at the double funeral for his parents. In all, he has been to eight funerals during lockdowns in the UK. He says that the rule of six limit at the crematorium meant many people in the community were standing outside for his own parents’ funeral, with the speakers not allowed to be turned on. “We couldn’t really say our goodbyes,” he adds.

No-one could have imagined the isolation in which millions of people in the UK would be expected to cope with grief and bereavement through 2020 and into 2021. Even for those without recent losses, lockdown created a vacuum in which grief – new or unresolved – rose to the surface.

To put this into perspective, the six digit numbers quoted in daily press briefings, and the red line that climbed ever upwards to the right in daily graphs equate to the most excess deaths in the UK since World War Two.

Grief is deeply personal and in the isolation of lockdown it has become deeply lonely as traditions and rituals for mourning have disappeared.

We talk with two grief and bereavement specialists at ProblemShared, Joyce Howitt and Susan Cappaert, to draw on their experience and take a look at what has emerged in related areas of research and ways to move forward.

Lost Grief Rituals

In a national survey of people bereaved in 2020, 94% said they had had to restrict funeral arrangements. Simply put, Covid-19 has changed the way we have mourned and the restrictions of the pandemic have made bereavement ever more stressful and painful.

Susan Cappaert said that this had been heartbreaking for her clients: “It has caused a lot of anger, frustration and confusion." Like so much else in this pandemic, an experience that has been so restricted that it feels watered down or token in gesture cancels out some of the benefit of being able to participate at all.

Article image

What Makes This So Much Harder To Bear?

In some ways, the answer to this question seems obvious to our collective understanding of what has unfolded over 2020 and 2021.

The particular mix of suffering that has unfolded means that the grief which follows is likely to be complicated at a level that may be hard to shift.

Factors that complicate grief in this pandemic are myriad and have trauma, shock, a void of control or self-directed choices, and a lack of resolution in the mix.

As Susan Cappaert says, “For many bereaved, there is constant worry about someone dying alone and the only connection they had to their loved one was a daily phone call to the hospital for an update."

As Joyce Howitt says,

"Even the most basic action - touch - has been lost."

Contact with those who are ill in hospital has not been possible; it is impersonal - often reduced to as little as the sharing by healthcare workers of a patient's stats and numbers - the "obs" of interval monitoring in a hospital ward (the observations of a patient's vital signs), and as reiterated in various research, this is partly because of the time pressures on hospital staff and care providers, partly because of the pressure on resources, but also because there is little other means of contact available to gauge matters given the physical impediments of PPE gear and ventilators. This means that there has been no opportunity for those bereaved to bear witness themselves and prepare for the inevitable, nor has there been an opportunity to give comfort to the loved one or resolve any unresolved aspects to that relationship.

Article image

The associations the bereaved may have with their loved one's physical struggle with Covid-19 can also play a role in exacerbating grief and other responses - for example the worries about a patient not breathing peacefully or dying while intubated.

"Bereavement care fell to a wide range of staff members, including some with limited experience or training in supporting bereaved people who had to rapidly develop the required communication skills," a survey of bereavement care found this year.

And then there is the added weight of conscience in accepting that there are limitations for those working the back-breaking hours in hospitals to deliver care in order to save lives in the face of what were mounting death tolls. It is a situation in which it can be hard to find an appropriate target or place to direct the anger, confusion, and lack of control that follows bereavement in these circumstances since everyone is trying their hardest.

Setting this against the backdrop of millions of people isolating at home for so much of last year and into this year, with limited social contact and restricted physical engagement with the outside world, it is a very particular context that gives rise to such intense grief.

Grief Can Be Different The World Over And That World Is Right Next Door

Although first-hand accounts of bereavement and the restrictions to our grief rituals have been played out in the media on an almost daily basis, the impact of varying cultural & religious sensitivities to bereavement is less talked about. There can be different cultural & religious emphases with regard to how to honour the departed, the number of mourners, the duration of the proper mourning period, traditions in the displays of grief and outpouring of emotion, and the rituals of the attendant physical bodily rites. Lockdown has been ever more compromising of the mourners' perceptions and hopes for the departed's journey onwards.

Another aspect to the cultural context is that the community in the U.K. which has suffered most disproportionately in terms of rate of bereavement has been the BAME communities. That these communities' share of loss is higher is in part due to the close-knit settings of extended family life in such communities which underlines the further fracturing of this community.

These communities are also broadly more likely to be involved in frontline "key worker" roles which cannot be done from home, especially with respect to healthcare. As reported in a study last year "One country, two crises", BAME groups number 44% of medical staff and 20% of nursing staff and it is these jobs where risk of infection was greatest. The first 11 doctors to die in the UK were from BAME communities.

A wider number of kin can also be affected by bereavement, due to the larger family size of BAME communities, as attested to by a study out of the United States. Those undertaking the national UK study on bereavement have also pointed out that one of their primary goals is to understand better bereavement across all population groups in order to provide more equitable bereavement support to those groups.

Understanding Different Types Of Grief As A Roadmap For Healing

The human ripple effect of bereavement means that there were at a minimum close to 4 million people bereaved in the UK on the anniversary of the first lockdown earlier this year in March, regardless of cause. The same bereavement study out of the United States that looked at differentiated weighting for different population groups put the multiplier for bereaved as high as 8 - 9 kin for every death based on factors specific to the ages of those who have died during the pandemic, being on average older and leaving behind several generations of family. This is well north of the usual bereavement multiplier of 5 kin, putting the number of bereaved well in excess of 4 million.

Article image

“Grief is an extremely powerful emotion; it is painful and exhausting in ‘normal times’, let alone this last year", says Susan Cappaert.

There are various psychological models of grief and schools of thought about processes that someone goes through in order to heal. Even usual uncomplicated grief cannot be easily boxed into a tick box of symptoms or experience. There is "wide diversity in the timing, expression and intensity across population groups and within families".

Prolonged Grief Disorder

However, the particular environment of 2020 and 2021 with its associated shocks and trauma makes for a different type of grief to the norm. Joyce Howitt says that although Prolonged Grief Disorder (PGD) (previously known as Complicated Grief) was already more common than most people might expect, it is likely to predominate now. Dozens of research papers over the last year have certainly anticipated a "surge" in this as a result of the pandemic" (Boelen et al., 2020; Eisma et al., 2020; Gesi et al. 2020; Goveas & Shear, 2020; Johns et al., 2020; Kokou-Kpolou et al., 2020; Masiero et al., 2020; Mortazavi et al., 2020; Wallace et al., 2020; Zhai & Du, 2020)

PGD is a form of grief that is distinct from the normal grieving process. Without treatment, the condition can persist indefinitely. According to the ICD, PGD persists beyond six months after bereavement or beyond the social, cultural or religious norms of grieving that might fit that person's profile. It involves pervasive thoughts of the departed, is accompanied by intense emotional pain and causes significant impairment in personal, family, social, occupational or educational settings, that may have complicating factors & trauma at its core but which is distinct from PTSD. It may also involve heightened emotions as compared with the more muted emotions of depression.

It was recently included as a diagnosis in the World Health Organization International Classification of Diseases, 11th edition (ICD-11) and is now proposed for inclusion in the USA's Diagnostic and Statistical Manual of Mental Disorder, 5th edition (DSM-5); these are the two main clinical catalogues of mental disorders. The descriptors for diagnosis in the ICD-11 have been much simplified and this implies a more flexible and sensitive approach to diagnosing this debilitating form of grief.

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Rise Of Wider Mental Health Conditions

There is also broader grief over other losses or "endings" in this pandemic. Life stressors abound - an end to social interaction as we knew it; financial stresses of redundancy, furlough or failed businesses; social and educational disruption for children and students and an end to school as we knew it with the new multitasking required by home schooling; disruption in living arrangements during relocations to form bubbles or where one member of a family needs to shield from the rest within the same house; strictest isolation for some individuals. This has triggered the parallel widespread rise of mental health conditions such as PTSD, anxiety, depression, loneliness, and anger. This has been compounded by the constant exposure to grim news. And compromised sleep and lack of proper exercise over the last year and a half have meant there has been no relief or other outlet for recharge.

These factors only serve to compound grief and also negatively impact the network of family and friends that might ordinarily be a source of support to the bereaved.

Depression, anxiety, and trauma-related disorders can arise with bereavement too even without the presence of PGD.

Unresolved Or Buried Grief

There is also unresolved grief which can become buried. "This can manifest itself later as physical or emotional illness" says Joyce Howitt. "Many of us have spent a lot of time on our own, with less to do than usual,” she adds, “and this can be the time that negative thoughts and memories including unresolved grief come to the fore.”

The Accelerating Factor

That grief can divide as often as it unites is something that at times is only understood by learning it the hard way through first-hand experience of it.

And with families divided physically and isolating in separate configurations, there has been the dissonant combination of remoteness that comes with physical distance on the one hand, and the hothouse environment on the other of isolating alone or with the smaller immediate family. This can risk accelerating division and isolation.

Disenfranchised Grief

Disenfranchised grief taps into another hurdle facing the bereaved in this pandemic - the risk of thinking that one's grief is dwarfed by the collective grief - "because during lockdown, people are conscious of having to get on with things. Well, I say get on with things, in fact you can't do all that much. And there is the tendency to think that others have it worse than you", as Joyce Howitt says.

For someone whose loved one died from a cause that is not Covid-19, there can be a misguided perception on the part of the bereaved or other people that this other cause of death somehow sidelines their grief - that they are excluded from the community of those who lost someone to Covid-19. Such disenfranchisement was reinforced in certain instances in the delivery of bereavement support - "In some cases, funding was allocated only for those who had been bereaved by COVID-19, which ‘could create inequality of service provision’."

Net Effect

This multiplication of stressors makes for a very particular grief landscape. The pandemic and the grief that it generates will continue to be a source of stress even when life finally does normalise.

M. Katherine Shear, whose pioneering research has contributed to the recognition of grief as a disorder in its own right, recently noted the difficulties of this pandemic: "Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much."

As Stroebe and Schut, jointly responsible for one of the most widely accepted bereavement models currently used in therapy, the Dual Coping Model, state in their most recent research on the impact of the pandemic: "Finding a place for the deceased in ongoing life, relinquishing the old ties and moving on may not be tasks that can yet be dealt with".

So even if we were permitted to observe our usual grief rituals or adopt more usual coping strategies, their value may be compromised in any case because of the complexity here. They would not be without value, of course, but having access to our usual rituals would not necessarily stave off the tidal effects of grief in this pandemic.

Recognising these factors and their impact on shaping grief is key. It allows us some space to be gentle on ourselves, our families and our communities as we start to normalise after July 19 2021, and it lays the foundations for considering how to move forward.

In Part 2 we talk about how to cope with grief through different lenses - what can be done day to day on a personal level, what can be done on a therapy footing, and more broadly as a society. As the tides of this pandemic recede a little and we make our way out, we must also shore up our ways to grieve and heal.