Rewriting content for carers - what we found out

Most people, at some point in their lives, will spend a lot of their time looking after someone. Whether it’s a mum or a dad, an aunt or an uncle, or a friend down the road, looking after someone is something a growing number of people have as part of their routines.

In council-speak, and in many other contexts, these people are called ‘carers’. Like many councils, Essex provides several services that are intended to support carers. These are generally fulfilled either directly or through arms length bodies or charities funded by the council.

One of the several statutory duties of councils relating to carers - under the 2014 Care Act - is to provide them with information, advice and guidance. This was one of our priority areas when we began the content redesign process of the material on Living Well Essex. There’s also an organisational need to help people self-serve and prevent their care needs escalating.

After reviewing the existing content, we then tried to build up a picture of the types of users we were catering to. As well as drawing on existing research and talking to user-facing people within Essex County Council (ECC), we also visited some carer’s support groups, both to do initial user research, then subsequently to test draft pages.

Here’s a quick summary of some of the issues we found in our discovery period, together with the action points they prompted. We have tried to use these to inform our content redesign, which is now live:

The everyday life of a carer can be very hard.

It’s tiring, stressful and emotionally draining. Pressures on the social care system have made what was an already difficult job harder. We need to:

  • Make content clear, easy to understand at speed
  • Improve navigation so content is easy to find

‘Carers’ are not a homogenous lump

There’s a big variety and contrast in needs. Someone looking after an adult with learning difficulties has a very different set of needs to someone caring for a parent with a terminal illness in palliative care. We need to:

  • Further refine different personas to get a better picture of our users

Their familiarity with the adult social care landscape varies

Some people have been interacting with council services of some sort for decades. Some are calling on the state for the first time in their life. Often when they are at breaking point or at a time of crisis.We need to:

  • Help ‘translate’ council terminology. Don’t assume knowledge.

People who look after someone don’t necessarily identify as ‘carers’.

They will say: “I’m a wife”, ”I’m a sister”, “I’m a son”. They see caring as merely part of being a good spouse, son or daughter and it may not occur to them there is external help available. We need to:

  • Continue to use language like ‘looking after someone’
  • Make it clearer what help is available

Lots of carers have their own complex emotional and mental health needs

They also may have their own long term illnesses or age-related conditions to manage. Dementia is a big associated condition with this group and can be particularly harrowing for carers. We need to:

  • Acknowledge mental health as an issue for carers and signpost or deliver tools where they can self-serve

They may have become very accomplished at navigating the social care landscape…

Carers often have to engage with many different local, national and non-governmental services to get what they need, becoming skilled navigators along the way.

...though there is a high administrative overhead associated with the role

One carer we spoke to managed 8 separate paid carers to help look after his child. This was just one small detail of his everyday: “I need a secretary to keep up with all the appointments”. We need to:

  • Log opportunities for other service design improvements which are out of scope of this project

Respite, and peer support, are highly prized

People want to be able to get a break from caring. And they want to share their problems with people going through similar things in a non-judgemental forum. Lots of information is shared and gained through happenstance, informal networks and interacting with people in similar situations. We need to:

  • Direct people to support networks
  • Be aware that online is just one aspect of how people find information

Large amount of carers are computer literate

Many people who use the site are either professionals or middle-aged people caring for their parents. And smartphone adoption among 55 to 75 year olds has now reached 71%, surpassing the penetration rate across all UK adults in 2014. We need to:

  • Make sure the content is optimised for mobile

Carers who don’t like computers often use a proxy

Often when we spoke to carers who didn’t use a computer to access information themselves, they did via a proxy: their children or friend would do so on their behalf. The demographic contacting the call centre was skewed toward people in the 75 to 95 age bracket. We need to:

  • Be mindful that some people will always prefer telephone contact over online
  • Make it possible for proxies to use online services

The issues carers face aren’t going to be solved by one website rewrite.

This is possibly one of the most important things to be mindful of. As well as the emotional complexities of looking after someone - which realistically, the council can be of limited help - the needs of carers involve interactions with many different organisations and involve close coordination (or otherwise) between adult social care, hospitals, GPs and others. It’s a complex service design issue for many parties. This content redesign is just one piece of the jigsaw. A website rewrite is clearly not going to be transformative to carers lives, but it has the potential to make a few interactions they have to make a little bit smoother.

Since the discovery, we’ve redrafted the content, tested it with users and published it. We’re now monitoring it, and within a few months should have some meaningful data against which we can measure its performance.

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