Understanding the bereavement landscape
From years of primary research with bereaved people, synthesised with a wide range of sources, has resulted in a strong understanding of the complexity and individuality of bereavement and the bereavement landscape.
Here are some highlights and simple design recommendations when desiging for bereaved people, to simplify their experiences.
Released: March 2024
Last Update: October 2024
Individual, complex but similar
Bereavement journeys
Each person's bereavement journey is individual and complex, emotionally and financially. However, all bereavement journeys have similar components, from the people, professionals involved or the actions that need to be taken.
Stepping aside for the emotional impact of the death of someone you know. The complexity of dealing with the death of someone financially and their affairs can be aggravated by a number of universal barriers and situational factors.
The 11 universal barriers, have been established by Government Digital Services, analysing the main reasons individuals require support interacting with government.
Situational factors aggravate the complexity for the person(s) dealing with a death.
Non-legally recognised relationships, is a common situational factor.
Common law marriage is no longer applicable in England and Wales.
Meaning a partner who is not married or civil partnered, cannot rely on their relationship alone, to be considered the legal next of kin, or to have the legal right to make medical, financial or custody decisions.
They may also be liable to Inheritance Tax where those with legally recognised relationships would not, placing an additional financial burden on the bereaved partner.
Stepping back to consider the emotional impact.
Bereavement significantly impacts cognitive ability.
Even when planning has taken place in preparation for a death, and no universal barriers or situational factors exist. Those preparatory actions, do not result in being emotionally prepared to deal with the death. With bereaved people still experiencing substantial barriers to complete the wide range of complex tasks, that are required to deal with a death.
Bereavement journeys
Each person's bereavemend journey is inidvidual. However, there are similar activities across these journeys, which can be easily grouped. The order, regularity and who takes action will dependant on the circumstances of the person who has died and of the bereaved person(s).
Death
Being present for the death or finding out the person has died.
Police or social services
Being notified, being asked to formally identify. Being supported or having interaction with social services.
Medical or Coroner
Being issued certificates from the hospice, hospital or coroner. Understanding process of review or autopsy.
Notifying others
Telling friends, family, employers, organisations, school, Government and others.
Financial activities
Dealing with finances and affairs or the person who has died, your own and that of other bereaved people.
Including preparation for a death.
Memorial acitvity
Any activity, rites, committal or ceremonies being arranged and taking place for the person that has died.
Registration
Registering the death, or joint registration of birth and death.
Emotional activity
Getting support for youself or others, or giving support to others. As well as dealing with the aftermath of the death.
Universal barriers and situational factors
Government Digital Services identified and grouped the top 11 barriers for people trying to engage in government services. They are awareness, interface & interaction skills, time, enthusiasm, access, comprehension skills, evidence, self-confidence, finance, trust and emotional state. To read more about the 11 Universal Barriers check out this blog for more information.
It can be assumed for all people dealing with a death, even when they are faced with no other Universal Barriers, that emotional state will impact their engagement with informaiton and impede their ability to complete tasks. This may be as a steady state, but is more usual a fluctuating state, that at some time bereaved people are more able to engage in information and complete tasks.
But what are situational factors, I use this term to describe other factors that relate to either the situation of the death, bereaved person(s) and their supporter.
I mainly talk about situational factors as aggravators to dealing with the death, due to added complexity or intersectionality in their situation. However they can be considered the opposite as well dependant on the situation, any beneficial factors tend to be financial and acquired after a period of time, this does not mean that aggravating situational factors where not present at the time of death.
Situational factors may affect specific user groups more than others, some with be affected by multiple situational factors, being explicit in their context is important when presenting this information related to research you have synthesised or carried out.
For example.
Zara's partner dies after a short illness. Zara's cognitive ability is significantly impacted by the death. Their partner was their unofficial carrier, helping them with everyday care needs, supporting them to work from home, and being their accessibility support to enable Zara to access support services.
The person who dies was the carer of the bereaved person, this is an aggravating situational factor in this situation.
The fact that Zara's partner removed universal barriers when they were caring for them, means that since their death, Zara is likely to be impacted by both aggravating situational factors and multiple universal barriers.
Common situation factors
Legally recognised relationships
A co-habiting long term partnership.
Their relationship is not legally recognised. Based on their relationship alone they have no legal rights to make medical decisions, organise memorial activities, manage their financial affairs or property, or have any custodial decision across children they do not have parental responsibility for.
They may also be liable to pay inheritance tax, where their married or civil partnered counterpart would not.
Relationship with the person who died
A grandparent in their 90s dies.
The loss of a family member can be devastating. Their age, quality of life or death usually does not reduce the emotional impact of the death. However, the societal expectation of how publicly, how long you grief for that person, and how significantly that grief will impact your day to day life, can vary, in the example here society may expect the death to have a less significant impact and result in short lived grief, which is unlikely to match the reality of the situation.
Cause of death
A person dies by suicide
A person dies by an unintentional overdose
The cause of death can bring in additional complexities, the shock, trauma and unexpected nature, police and/or coroner involvement, blame can be attributed to bereaved people, loss of support network, lack of openness to talk about what has happened and exclusion from religious rites and communities, creates additional layers of isolation during traumatic times.
Desiging for bereaved people
Keeping in mind that bereaved people interact with organisations driven by a number of factors, including find-ability, familiarity and confidence, when that interaction is driven by a bereavement. This means that intended bereavement services are not always the first point of contact for a bereaved person.
All business and organisations should be prepared to be contacted because of a bereavement, this should be considered separately to other changes for both the bereaved person and the person that has died, dealt with respectfully and ethically. Part of that respect is recognising that a change of circumstances due to a bereavement is different to a standard change of circumstances. This can involve both closure of an account of the person that has died, or transfer to, or creating a new account for the bereaved person.
Past negative experience with an organisation or others due to a bereavement increases the vulnerability a bereaved person feels in the situation and can lead them to avoiding contact with certain organisations.
Let's look at some simple design guidance for designing for bereaved people.
Planned does not mean prepared
Many people do not want to think or plan for their death. Some are triggered to plan once, of those a proportion will update that plan, when they feel it is needed.
A plan may cover their financial affairs, their wishes or funeral or rites, or both.
No or unclear plans for wishes place a heavy emotional burden on bereaved people.
Plans do not tend to be complete or up to date.
Planning for a death financially or otherwise, does not emotionally prepare a person to go through the process.
Don’t expect me to know
Awareness of what support is available and what tasks need to be done, when, how and the consequence of doing or not doing them when someone dies is low. There is no singular place to find out this information in general or for their personal situation.
They expect that organisations will tell them everything they need to know positive and negative, this is not met.
Giving bereaved people realistic expectation and signposting is hard for the organisation to communicate, but that avoidance creates long term negative impact on the bereaved person.
We do not all feel the same
Dealing with a death is a personal experience.
Even when someone close to them has died, they may not feel the same as others in that situation, at that time or at all.
Empathy is appropriate and more sincere than sympathy, which can be triggering in some situations.
In telephony settings there is more freedom to mimic the bereaved persons language, unlike online or paper, where we have to encapsulate all situations, in a respectful way.
Being patient and empathetic is so important across all channels.
Support matters
Support is essential when dealing with a death, both emotionally and financially.
Having someone to help can be the bereaved person’s only way of accessing support and understanding what they need to do because someone has died.
Depending on the type of death, or relationship with the person that has died, support is not always available. Or is only available for a short period of time, making it harder to deal with a death.
Bereavered people need to know how to access support in a way that is accessible for them during this time.
Adapt with my needs
Cognitive processing is affected by a bereavement.
People may not understand their needs, which may fluctuate day to day.
People need to be guided to and offered cross channel services.
Enabling them to find and complete tasks in the most accessible way for them at that time.
If the bereaved person is unable to interact enable their supporter to do it for them in a legally safe way.
Expect that bereaved people need follow up communication to confirm what has been discussed or actioned, due to impact on working memory.
Be upfront and direct
Being upfront and direct enables the person to quickly and clearly understand the benefit or consequence of timely action.
Difficult messages need to be clear to understand and effective signposting to more appropriate support or information must be in place.
Reducing time, money and effort spent to get the answer 'no' especially if that answer cannot be changed.
This is important across all interactions and channels, giving consistency. And further explanation may be needed to be provided through a secondary channel to support their understanding.
Bereavement is not a standard change of circumstance
People contact organisations in different ways when they need to update their information or tell them about a change, this could be online, by phone or by post.
The method they choose can be driven from a range of reasons, the change they are making, their access, access needs, preference or the preference of a supporter.
Bereaved people mostly do not consider contacting organisations due to a bereavement as a change of circumstances. Where a support network exists for that bereaved person(s), it is common to share out tasks. This adds complexity to predictive trend analysis, as the behaviours, knowledge and awareness of the supporter will impact the channel and point of contact.
These external factors such as access, availability of support and ability to communciate through channels influence the behaviour of the bereaved person(s) and their supports. Find-ability of method and information are also key factors that influence behaviour.
Due to this several conflicting findings are established when researching with a wide range of bereaved people and their supports.
For example,
The person carrying out the task, either the bereaved person(s), their support individually or together:
- will contact organisations in the way they are use to
- will contact organisations in the way they have been signposted to, rather than their usual contact method
- will contact organisations in the way their supporter is more comfortable with, so that they can lead the communication (the reverse is less common)
- will contact organisations online, so they have confirmation and evidence that the action has taken place
- will avoid talking to a person so they do not have to repeat what has happened again
- will choose to talk to a person so they are confident the action has taken place.
- will contact through a less preferred route due to the person that died being their supporter
Overall bereaved peoples' method of communication is driven by a variety of reasons including find-ability, their or their supporters familiarity, confidence and access.
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As an organisation thinking about the journey of a bereaved person it makes us aware that intended bereavement services (if they exist) are not always the first point of contact with the organisation.
A service design approach should be considered when mapping how bereaved people and their supporters interact with organisations. When that intended bereavement service is not the first point of contact, smoothing and joining a bereaved person(s) or their supporters journey is important, and enables effective management of that information from all possible points of contact.
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The aims of that journey will depend on their situation. In the case of a monitored alarm contract, this could include:
- closing down a bereaved person's account, understanding if any monies are owed or owing
- changing the main person on an account and removing the bereaved person's name from the account
- transferring an account, replacing the named account holder
- creating a new account.
Bereaved people consider all of these journeys (and other journeys triggered because of the bereavement) as a change because of a bereavement. That these interactions will be dealt with respectfully, part of that respect is recognising that these changes due to a bereavement are different to standard changes. Expecting to receive a higher level of understanding (especially if they are upset during a call), to be dealt with ethically and that processes are clear, simple and completed with ease.
Some organisations have bereavement teams, specially trained staff, or show high levels of recognition without those structures in place. When things work well and are smooth respectful and understanding then preference to these organisations are high and impacts future interactions and organisation choice.
However other organisation do not deal with bereavement in the same way. Putting the onus on the bereaved person to find out how to make changes, transferring them from department to department. Bereaved people talk about the substantial negative emotional impact from these interactions. They feel vulnerable, out of control and for some lead to avoiding further contact with organisations beyond that they had a negative experience with incase it happens again.
Confidence is also impacted when organisations force bereaved people to communicate through a method they feel uncomfortable with, even when bereaved people have understood why the process may be that way for example, sending bank details through the post, it increases their anxiety and worry about completing the task.
Be warned bereaved people remember, share their experience and change their future choices of which organisations to interact with based on these experiences, even when every other transaction may have been satisfactory with the organisation.
More coming soon
Updates will be coming on a regular basis.
More to come on:
- understanding the bereavement landscape
- researching with bereaved people, ethics and the psychological impact of trauma informed research.
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