How to respectfully involve unpaid carers in your work

Nia Campbell, 31 May 2023, User research, Inclusive design

We believe that everyone is an expert based on their own lived experience, and that we all have unique and brilliant contributions to bring to a design process.

Principle 6 of the Design Justice principles.

Like many other content designers, my own unique experience is a big part of who I am, both professionally and personally.

My professional life is centred around making sure that what we design recognises and works for the unique experiences we all have.

I have also been through cancer. And cared for my mum who died of the same disease. And in between those two life events, I worked at end-of-life charity, Marie Curie to design content for unpaid carers.

Unpaid carers’ experiences

In England and Wales alone, unpaid carers save the government an estimated £162 billion each year. Yet research shows that carers are still largely ignored and undervalued.

An annual survey by carers’ rights organisation, Carers UK continues to show that unpaid carers are facing the same challenges year on year:

isolation and loneliness,
money problems,
physical and emotional strain,
giving up work and their social life,
unable to look after their own needs or plan their own future.

My time at Marie Curie was a steep learning curve in how to involve people with lived experience in my work. I was hearing first-hand from people who had been caring for others for months, sometimes years.

A lot of the things I heard, I then went on to experience for myself. It turns out that researching and writing about caring for someone who is dying doesn't really prepare you for it.

So, how do you involve people in work that’s about them when they have little time and energy? How do you learn about their life experiences in a considerate and ethical way? How do you stay true to the mantra of ‘nothing about you, without you’ when you know that their participation is asking a lot?

How to involve unpaid carers in your work

People are the heart of content design. But when they’re isolated, and unable to plan even a day ahead, how can we involve them in our research and work?

Make the most of existing research

There’s a lot of research out there already. Carers have given up their valuable time and energy to contribute to research and tell us what they need. It's important to make the most of the research that's already there, and act on it. Of course, their needs can change over time, but desk research and looking at what's already been done is a good starting point.

Try:

Pay for their time and expertise

Carers are the experts in their own world, a Marie Curie nurse once told me. It’s essential that we pay them for their time and expertise, like we would any other expert.

As inclusive communications specialist, Ettie Bailey-King explains in this Twitter thread, “we are experts in our own life experiences. And experts get paid. Because we have unique and valuable contributions to make.”

And for context, unpaid carers get just £76.75 a week in Carer’s Allowance for providing at least 35 hours a week — roughly the same hours as full-time employment.

Be considerate of their time and energy

‘Juggling’ is a word often used to describe the day-to-day life of an unpaid carer. They can care emotionally, physically and financially, and often have a never-ending to-do list. Be considerate in what you’re asking of them — they’re already busy and tired. Let them know exactly what you expect of them, and allow for breaks.

Provide different ways to participate

Sometimes unpaid carers cannot leave the person they care for, even for half an hour. They might be sat with the person they care for, which may affect what they feel they can tell you.

Try to meet them where they are, and work out if there are different ways they can participate that are not time-limited, too. For example, diary studies or surveys.

Let them know that it’s okay if they need to cancel

Life is unpredictable and things can change quickly when you’re caring for someone. Let them know in advance that it’s okay if they need to cancel, even at the last minute. And make sure they have a main point of contact so they feel comfortable doing so.

Avoid making assumptions

It’s important to remember that not everyone likes or gets on with the person they care for, and sometimes people are carers for life.

As the We Care Campaign teaches us, no one chooses to be in this position. Leave your assumptions at the door and be prepared to listen.

Help them know where they can get support

Talking about personal experiences can be emotional and traumatic. Feelings may show or they may not.

“We all express our feelings differently. It is important not to make assumptions about how someone is feeling based on how they “seem” to us,” says researcher, Grace, in a blog post about Scope’s approach to participant wellbeing.

Almost a third of carers surveyed by Carers UK in 2022 said that their mental health was bad or very bad. And over a third said that not knowing what services were available was a barrier to accessing support.

While we cannot act as counsellors in user research, we can:

listen actively to what they’re saying,
take their experiences forward through our research,
sign-post to other organisations if they need support.

Remember they might be grieving

Most importantly, if you’re working with an unpaid carer, remember that they can be grieving. Anticipatory grief is a very real and complex thing, and carers can be grieving while they care.

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Carers Week 2023 runs from 5 to 11 June. Find out more about Carers Week.

Thank you to Rachel and Clare for help in writing this piece.