Designing for death and bereavement

Our content designer, Nia Campbell reflects on an event about what we can do to better support people through death and bereavement.

I was delighted to speak at Content TeaTime's death and bereavement event, and share my experiences of working with Marie Curie during the pandemic. The line-up was stellar, and included:

  • Lisa Forde, Senior Content Designer at Nationwide Building Society​,
  • ​Jane McFadyen and James Orange, content designers for the Department for Work and Pensions (DWP),
  • Jamie Kane, User Researcher at Co-op​,
  • Sarah Key, Lead Content Designer at NHS Blood and Transplant​.

Between us, we covered:

  • user research with people in vulnerable or stressful situations,
  • content challenges with sensitive topics,
  • the difference between empathy and sympathy,
  • the language we use around dying, death and bereavement,
  • what you learn when you become the user.

Designing for emotion

Since the event, one question has stuck in my mind. How do we design for people whose emotions and experiences we may not fully understand?

Do your research

"Without research, design is guesswork", said Jamie from Co-op. He suggested making sure that you have enough time and the right resources before carrying out research with people in vulnerable situations. Research participants need plenty of time and a calm environment to fully share their story.

If you do not, he suggested learning from the wealth of experts and information already available. On the topic of death and bereavement, look at work by organisations like:

Give plenty of options

Lisa spoke about how Nationwide were working to make it faster and simpler for someone to notify the bank that someone had died. Interestingly, they found that even the most digitally-active people were not always drawn to a digital process.

"Paper is critical to organisation”, Lisa said. “Not everything has to be digital. In fact, what they wanted was physical pieces of paper to keep organised. These physical copies were helping the user feel that we were being more transparent, so it was building trust."

A similar theme came from the research Jane and James had done out at DWP.

"Like many major life events, there's a lot of paperwork and things to do following a bereavement. And this often needs to be done while juggling a load of different tasks with multiple organisations", James said.

Their research found that people might do these tasks at different times — for example, when they're unable to sleep, or at night when the home is quiet and there are fewer distractions.

Giving plenty of options is therefore important. For example, online and offline channels, and making sure that services are available at all times.

Manage expectations

Designers can help people through difficult tasks by making processes less overwhelming.

The DWP uses a range of methods to help manage people’s expectations of using services, including:

  • saying how long the process will take,
  • explaining what questions will be asked in each section to avoid surprises,
  • letting people know what information they’ll need before starting,
  • breaking up the service to allow people to take breaks,
  • providing confirmation when things are completed.

Use empathy, not sympathy

It’s natural to want to sympathise with people when they’re going through a difficult time. Yet messages of sympathy may not be appropriate.

Not everyone is upset in the same way by a death.

“The bereavement could come after a long illness", James told us. “They may be well-prepared for it. Or the person who died may not be someone they liked. It's not one-size-fits-all, so we can't assume and make those kinds of statements."

On the point of being considerate with our messaging and language, Sarah described how they honour their users’ language in NHS case studies.

“Case studies are incredibly helpful when it comes to helping people work out what decision they want to make, and promoting the work that we do. But the language in those case studies differs from what we want to use as an organisation."

It’s important to do what’s comfortable for users, especially in times of emotional turbulence. If they use euphemisms like ‘gone’ or ‘passed away’, we should respect and reflect that. It may be best practice to use clear and concrete words like ‘dying’, ‘died’ and ‘death’, but sometimes it’s more important to show empathy and care for people’s stories.

Crossing the experiential boundary

The speakers at the event spoke powerfully about their work with bereaved people, and the importance of doing user research.

I made the point in my own talk that there will always be things you do not understand until you experience them yourself. It's important to remember that people find their own ways of coping; they are the experts in their world.

As content designers, we do not always need to have the answers or the direct experience to help people. It's important to remember that our work has its limits and content can only take users so far.

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