Testing content about death

Content warning: this blog post talks about providing information and people’s experiences of planning for their death and bereavement.

It’s the circle of life.

Yes, The Lion King is my favourite Disney film. But it’s also something that was said to me in a recent testing session about explaining death.

Other things that people have said when we’ve been testing content on the topic of death include:

• I am human. I will die.
• Death is inevitable. It will happen to us all.
• Everybody dies. Knowing everybody dies will make it less of a big deal.

There was an acceptance that death is an event that will happen in all our lives. But research by Marie Curie found that 51% of participants thought that, as a society, we do not talk enough about death and dying.

So, if we don’t talk about it enough, what do we do when we need to plan for our death, or somebody dies? Our analysis of emails to our helpline, posts to our online community and interviews we did with disabled people showed that people come to Scope for advice and support about:

• planning for their own death
• what to do when somebody dies

Our research found that planning for death and somebody dying can be even more challenging for disabled people.

• Communicating what you want and need when you die is important for disabled people, especially if they have had negative or traumatic experiences with the health and social care systems.
• The cost of planning for death can often be higher for disabled people and their families, both financially and emotionally. For example, the legal costs of setting up a trust and not wanting to affect the lives of other people by asking them to care for their disabled child.
• There is greater pressure on parents of disabled children to get it right. They must balance what they want to happen when they die, with what their child may need for the rest of their life. The decisions they make and the plans they leave will affect:
  - their child’s quality of life
  - who will care for their child and keep them safe
  - where their child will live
  - their child’s financial security
  - if somebody has control of, or manages, their child’s finances
• Accessing financial support after somebody has died and paying for a funeral is difficult for disabled households who already need an additional £975 a month to have the same standard of living as non-disabled households.

Keyword research also showed that lots of people look for information about death using search engines.

The information needs we identified and created content for covered a broad range of topics including:

• making a will
• setting up a trust for inheritance
• what to do when somebody dies
• explaining death and bereavement support
• benefits, financial support and housing when somebody dies

Recruiting participants

We did not know how easy or hard it would be to recruit participants to give us feedback on content about death. For the content on wills and trusts, we recruited people who used our free wills service.

For the content on what to do when somebody dies and the support pages after somebody dies, our awesome Panel Executive recruited people from Scope’s Research Panel.

Our Panel Executive said that there are far more people interested in talking about death than you think there would be and had the following advice.

• Give extra detail about what the sessions will be like.
• Give extra examples of adjustments we can make and ways that participants can take control. For example, giving people the option to meet the researchers before the session was appreciated.
• Include more death-focused signposting in pre- and post-session emails, alongside the usual! And be extra speedy sending post-research emails.
• Be aware of the balance between “Speaking to you really helps us” so they know we appreciate their time and experiences and “We won’t be worse off if you don’t fancy it” so they don’t feel guilty at the idea of saying “Actually, no thanks”. This is always needed, but especially with these sessions.
• Knowing that I’m sending them to excellent researchers who will take care of them and keep their comfort as the priority.

Recruitment has not been straightforward. We’ve struggled to find people who could give us feedback on information about benefits for people with a terminal illness.

How to talk about death in a testing session

Marie Curie’s research found that, with family and friends, most people (65%) are comfortable or very comfortable discussing death and dying in general. With even more people feeling comfortable or very comfortable talking specifically about:

• end of life wishes for treatment and care (72%)
• end of life wishes around death (74%)
• funeral arrangements (74%)
• financial affairs (75%)

As a person, I am comfortable talking about death and dying. But I’ve been told in the past that I can be quite blunt because I talk about it using ‘dead’, ‘death’ and ‘died’. So, I was expecting people to be less comfortable talking about it than they turned out to be. As a researcher, it was a new topic to me, and I knew the language would affect the experience the participant had during the session.

An important part of Scope’s house style is that we respect other people’s language choices. And as a team we are moving to a trauma-informed approach to user research, where principles of empowerment, voice and choice are central. So, this is the approach we took during testing sessions, with participants deciding and guiding what language we should use.

Before a session, we have a little bit of information about a participant’s experience. We used this information to find out how a person would like to talk about death in the session. For example, “The Panel Executive told us that your parent died. Would you prefer us to talk about when your parent died or more generally about when somebody has died?”

Most people wanted us to talk about their specific situation. But there were a couple of people who wanted to talk about ‘somebody’. We didn’t ask why participants wanted to talk more generally, but one said it ‘felt a bit morbid’ to think about their own death and another person said it was ‘too close’ to speak about the death of their parent.

Even when people asked to speak about death generally, they often spoke about their personal experience and applied the information to their situation. The important thing for us was that they did this in a way they felt comfortable.

At Scope we try to use Plain English. But when talking about death, lots of euphemisms are used. One of the first questions we asked in the sessions was for people to share a little bit about their experience. This let us find out what language people used and reflect this during the session. For example, if people said a person died, we would say ‘died’. But if they said a person ‘passed away,’ we would use ‘passed away’.

What we learned from testing sessions

1. When people are looking for information about what they need to do when somebody dies, or their rights for housing and financial support, they want their emotions to be acknowledged. Participants told us that recognising their situation is emotional and not just procedural shows that you understand. And that they were more likely to trust the information if they felt it understood them.

2. Reassuring people that there is no right or wrong response to somebody dying. Participants thought that it was important to say that people react differently when somebody dies and to reassure people that having different emotions or behaviour to somebody else is OK.

3. Language is important, but it is also personal. In testing sessions, we were able to tailor our language to each participant. But in the content we were testing, we had to find a shared language. There was a mixed opinion on some phrases.

• ‘Dead’ and ‘died’ sometimes felt jarring to participants but was also seen as clear.
• ‘Has lost someone’ and ‘passed away’ felt softer to some people but were seen as confusing to neurodivergent people and parents explaining death to children.
• ’Is no longer alive’ was seen as a clear way of saying died by people who found it emotionally hard to read ‘dead’.

4. Autonomy and choice were important in testing sessions.

• Giving people choices over how the sessions would happen and what they needed to feel safe and comfortable.
• Sharing the content in advance so people could look at it before the session if they wanted to.
• The environment. For example, who was there or if cameras should be on during videocalls.
• The language used, what we would or wouldn’t ask questions about, sharing only what participants felt comfortable with.

5. Content needs to offer autonomy and choice.

• Planning for death and dealing with somebody dying are personal. If there are options, tell people about them. Participants felt that it gave them more control in the situation and helped them to be more objective.
• Participants felt that giving options removes the pressure from people so that they do not feel like they are making the wrong decision.
• People wanted a choice of different tools they could use to help them explain death to somebody else. Parents of disabled children said that different options would help them to explain death using something that their child was already familiar with, that was appropriate for their age and abilities. Parents suggested:
  - words and phrases
  - videos
  -storybooks
• Finally, participants said that when somebody has died it can make it more mentally challenging to read information and understand what they need to do. People wanted actions to be presented in a clear way, and often requested formats that would help them to remember what they need to do. For example, a checklist. People also wanted to be able to access a human if they needed help or to check they were doing something properly. But participants wanted to be able to contact people in different ways depending on how they were feeling. For example, some people wanted a phone number so they could speak to a person and get reassurance. Whereas other people wanted an email address or text function as they did not want to get upset speaking to a person on the phone. So, providing a choice of contact methods was preferred.

I’ll leave you with the words of 2 participants who summed up my experience of testing content on death perfectly:

• “Nobody teaches you about what you need to do when somebody dies. And by the time you need to know it feels too late.”
• “Death is sad, but we need to normalise it.”