Gathering Insights: what we’ve learned from carers
Here at the Carers’ Centre, our vision is of a community where carers of today and tomorrow are fully recognised, valued and supported. With the number of carers set to increase by 60% by 2030, how can we sustainably achieve this? We believe we must work to ensure support for carers is improved and embedded within the communities that surround them.
Thanks to funding from the National Lottery Digital Fund, we have begun to look at the relationship between carers and their communities, to understand what action we can take to make this a reality. This blog looks at what we’ve learned so far in our conversations and insight gathering.
What did we do?
When we sat down to consider the problem we were trying to solve there were lots of questions and very few answers. Who are the communities around carers? Do they understand what they can do to support carers? Do we know what they could do to support carers? Do carers want this help? The list went on (and on). It was clear our first step had to be talking to carers themselves. How did they feel about community support and what could we hear about the needs they had that weren’t currently being met.
We did consider if asking these questions in a pandemic would muddle things somewhat. But the needs of unpaid carers haven’t changed over the last year. Instead they have been amplified by the isolation, stress and challenge of looking after a loved one through lockdowns and beyond. Information we gathered during the pandemic would still have long term relevance.
At first, we looked to gather quick insights from carers through the regular calls we were making. Talking to hundreds of carers a week meant we were able to capture large amounts of data about whether they felt they were getting any support from their community, and what that looked like. Overall, a significant proportion of young and adult carers felt they do get some support — but a large chunk clearly feel isolated and alone.
When we delved a little deeper, we found that support comes from a variety of sources. Predominantly friends and family but also neighbours, work colleagues and professionals such as GP’s. We also asked what type of things carers got help with, and the answers were as you might expect, with a large proportion getting practical help with tasks or emotional support to cope with the stresses and strains of caring.
So far so good — lots of quantative results and ideas of who we could begin talking to in the community about carers. This would enable us to come up with some ideas to trial which would improve the support carers get. Right? Unfortunately, not quite. When we looked more closely at what we knew, we realised there were still things we didn’t understand. Whilst it had been good to get a snapshot understanding from a large sample, we realised we needed to have more in depth conversations with carers to understand what was going on. Working with the DOT-Project, we created a user research canvas to help us understand what we still needed to know. Through the course of 20 initial, in-depth conversations with carers we gained so much valuable insight to add to what we’d already found out. If you’re like me, it was frustrating not to just act, get to the solution, make a difference. But stopping to really understand the user, and the problem, was eye opening in terms of what we learned and how this will influence what we do next.
What did we learn?
- The word ‘Community’ isn’t helpful!
A lot of the carers we spoke to initially said they had no support from their community. But further digging revealed they did have help, they just hadn’t initially identified it as such. Why? It seemed the word community was the stumbling block. Everyone had different perceptions as to what this meant. Your geographic area. Your friendship circle. Your online world. We were viewing a ‘community’ as everyone you might come in to contact with who could help you — both informally (friends; neighbours; the local pub etc) and formally (health and social care provision; third sector organisations). How might we help carers understand who their community is (without using the word community!)? - Carers don’t feel seen by those who could form their support network.
Time and time again we heard that carers feel invisible. People don’t want to ask how things are, or do ask, but are more than happy to accept an ‘it’s ok’ answer, when it’s clearly not ok at all. Particularly within the world of professionals, they can feel pushed aside or ignored. If they don’t feel seen, how could they possibly feel like they can ask for support. How might we help them feel seen and acknowledged by those around them? - Carers don’t feel heard by those who could form their support network.
We heard stories of carers who felt they were fighting to try and get the right help for their loved one, but that what they said wasn’t listened to, meaning the support that was put in place wasn’t appropriate. And other stories of carers who just felt people weren’t hearing what they were saying, meaning the advice offered just wasn’t helpful. In fact in some cases it was the exact opposite of helpful. Overall, regardless of the caring situation, having someone who just listened, without judgement, was seen by many as one of the best forms of support. Carers go through so many conflicting emotions on their journey that having a space in which to just be open and honest about this can take a huge burden away. How might we find this space for them and enable them to feel listened to? - Carers don’t have time to seek out support.
They have so many challenges to juggle, particularly in the current climate. Their focus is so wholly on the person they care for that when stretched for time, their needs often come in second. “I haven’t had a break for a year. How can I think about what I need when I don’t have any time to myself?” How might we guide carers through the steps to build support given the challenges on their time? - Support from other can be a lifeline for carers
As well as the challenges they face we also heard some powerful examples of when support works well. A carer whose brother in law refused to take no for an answer, making sure he took her to a worrying health appointment. A carer who for the first time was seen and heard by a mental health worker, who listened to his concerns and took the time to explain what was going on. Carers who were able to talk to siblings, who could share in the challenges they faced without judgment and recognise when ‘it’s ok’ wasn’t really ok. How might we emulate this for more carers? - You can’t overestimate the value of conversations
Whilst we had gained a lot of data through our quick questions over the summer, we gained just as much (if not more) from the smaller number of in depth conversations we had with carers. Although we had a number of set questions we wanted to answer through these conversations, we also found the most valuable insights came when we just talked. When conversations went in their own direction. Each interview did take time (usually 30–50 minutes) but when split between the group of staff gathering the insights it was a small amount of resource well spent.
What’s next?
Our conversations with carers certainly generated some interesting ‘how might we’ thoughts… ways that we might be able to help empower carers to ask for help and empower those around carers to be able to give the help carers need. Our next steps are to explore these in more depth! We want to have more conversations with carers, to confirm what we’ve found out, nuance our understanding and add new insights. We want to have conversations with those around carers — do their insights match with those of carers or are their other things we need to explore? Other ideas we need to develop? Finally, we already have the sparks of ideas that might make a difference. So we want to look at what others are doing. Talk to other organisations who have similar ideas. We’d love to look at partnerships and shared learning so we can maximise the difference we make to carers.
So, we’re still not (quite) at a stage of testing our ideas, but we believe this time researching and discovering is time well spent to make sure when we do start to test, the ideas have more chance of success. Patience is a virtue we are learning! And this learning is something we’re also looking to cascade throughout the organisation. Using both qualitative and quantitative insights in service design is definitely something we want to do more of moving forwards!
