Gathering Insights: What we learned from the wider community
The final blog in our ‘insights’ series looks at what we learned from the general public about their views on support for unpaid carers. Figures vary, but at least 1 in 8 adults help to look after someone. So, chances are, if you know more than 8 people, you know a carer. But is this something we all recognise? And do we all feel equipped and able to reach out and help the carers we know?
With some help from ClearlyPR; Community First and Digital Wonderlab, we spent the summer talking to the general public about carers and caring. We have engaged with over 200 people as part of this work. There’s still more work to do, but here’s the highlights of what we’ve found so far. If you want to read in to the detail, a full report from our Community First work can also be downloaded here.
Carers are part of the the general public too
Our research was primarily focussed on the wider community around carers, but also enabled people who care and are not part of The Carers’ Centre, to have their say. The results revealed that carers find it very difficult to do so, and sometimes never do.
Quite often they feel the community around them are too busy; or they don’t have time to think about how they could help; or they don’t want to be a burden or don’t want people to think they can’t cope. This goes to the very heart of the work we’re trying to do — it’s heart-breaking that carers are in situations where they need help but feel they can’t ask for it.
This is compounded by another key theme — carers not recognising that they are playing a caring role. This can mean they hide the full extent of the work they do behind closed doors, away from those who could support them. Alex and Katrina from Community First were really struck by how much they heard this when they were meeting people.
“A clear barrier [for support] after our discussion that comes up for me is knowing whether they are even a carer. I didn’t know I was one…”
This was mirrored in some user testing we undertook with Digital Wonderlab for our new website. They were able to arrange for several people with caring responsibilities (not known to us) to test the site. They all said they weren’t carers, yet acknowledged they do care for someone. They much preferred language on the site which spoke about looking after someone, but not being a carer. It seems it’s definitely a label some people don’t like or recognise.
So, how might we empower those who care to recognise they can ask for help? To overcome those feelings of guilt for reaching out? Or how might we empower those around them to be more proactive in offering help and showing they have the time and space to care?
The community have some understanding of the role unpaid carers play
From a poll we undertook on Twitter, 50% of those who weren’t caring themselves knew a carer. Just 35% didn’t think that they knew a carer. Now — given that 1 in 8 of us do care, it’s possible that they do know someone, but haven’t them as a carer. Some of the people we spoke to said:
“I haven’t really thought about it. It seems to be something we can put out of mind. If it isn’t in our home, we don’t have to deal with it.”
“I can’t say I have ever thought about it. Honestly never, but now that you raise it, I suppose it’s something you never consider but then could happen to you at any time. Out of nowhere. I haven’t thought about it before until now.”
Additionally, regardless of whether they know a carer or not, most recognise the multi-faceted role that carers play. Most saw that carers weren’t just responsible for personal care, or medication or household chores. They saw it as all of these things as well as emotional support; shopping; errands; support with travel and getting to appointments and more.
Given that previous research we’ve undertaken, albeit less widespread and more anecdotal, has always suggested people really don’t understand the caring role, maybe the tide is turning. The pandemic has helped to shine more of a light on the role of unpaid carers, and this knowledge is, possibly, permeating more fully into our social fabric. However as yet, carers are not feeling the benefit. They still feel unsupported, unseen and undervalued — often in spite of the increased community spirit and response through the pandemic.
So, given that the vast majority of us will care, how might we build on this, and find ways to bring the issue of caring into everyone’s perception? How might we then enable the wider community to recognise the vital role carers play and ensure carers feel seen, valued and supported by those around them?
The wider community are not confident of how to spot a carer in need of help.
Interestingly, despite the high level of knowledge of carers, few felt they could recognise if that person needed help. I think you could get into a discussion here about whether carers need help all the time, or just when things are tough, and what help really means.
But for me the important point is that the research showed more than a third of people are really not confident to spot a caring needing help. Almost half are only somewhat confident. That’s over 55% of people who aren’t confident when a carer might need help or how to spot that.
How might we work with the wider community to give people the confidence they need to offer help when carers need it? How might we work with carers to empower them to be open about the role they play and the help they might need?
Most people feel they could help carers in some way
When given a choice, most people felt there was something they could offer to support unpaid carers. From a smaller online survey we ran, this includes 50% who would offer practical support in terms of stepping in for a few hours or running errands, doing shopping, financial support etc. And over two thirds who would offer emotional support and keep in touch to ensure carers don’t feel alone.
Only 15% were worried they didn’t have the time — and this was mirrored in the results on a Twitter poll answered by 1115 respondents. This is interesting when compared to our carer responses. The impression carers are being given is that the wider community are too busy, yet the wider community feel they do want to offer help. How might we bridge this gap? How might we provide both carers and the community with the information they require to connect and get or give support?
The wider community don’t feel carers get enough support
Which definitely mirrors our experience and what we hear from carers. It’s great to see the wider community recognise carers need help and support with the often challenging role that they play. The conversations around this varied, and carers would definitely like support from the wider community, but there were also conversations about the role that The Carers’ Centre has to play in improving support — or maybe making support more accessible. This wasn’t necessarily answering the questions we were asking. Or rather, it wasn’t answering them in the way we expected. But it was the way people interpreted the question and that shows this is a key concern for them. It doesn’t matter if it’s not what we want to hear. It’s what we should hear.
Many carers we spoke to who weren’t engaged with our services felt signposting to support was poor. This couldn’t be more telling that the fact that only 1 carer who was spoken to by Community First had heard of The Carers’ Centre.
“We have information everywhere but it is the carer that has to go and get it. We don’t get offered it and that is fine for someone stubborn like me who will hunt it down but lots of people wouldn’t even consider that there was support for them. There needs to be more proactive work into getting information to them”
How might we better communicate with people who we are and how we help? How might we link this to what we’ve heard from professionals to build more proactive support for carers?
As well as accessibility of information, physical accessibility was seen as an issue. Transport for rural, older carers was raised as a barrier to support. This is compounded by the fact that many older carers feel digitally excluded — so the answer is not necessarily to push services online. How might we ensure that rural, older carers feel able to access the services we provide? This is possibly outside the scope of the current digital project, but an important thing for us as an organisation to engage with.
Finally, we heard that the community feel primary care has a bigger role to play in supporting carers. There were a number of negative experiences with GP’s noted.
“Doctors aren’t supportive, they don’t signpost and they aren’t good at recognising when the patient/carer is struggling.”
On a more positive note, looking back to our research with health and social care staff, we know that there are things we can do to improve this. We also know GP’s are under immense strain at the moment. So how might we work with primary care to improve knowledge and information, ensuring carers are getting the proactive support they need within the limited time resources practices can offer?
There was much more we learned from our research this summer — in particular some great ideas from carers themselves about things that would help. More can be read in the Community First report. But what now? There’s no point in having insights that don’t go anywhere. Our next steps are to take this knowledge and test the things we might be able to do to make a difference. Design and prototype. Some of those ideas might not work. But some, we believe, will stick, and can help us make a difference for carers. We’ll post what we do and what we learn as we go!
