Blog by Flora Death, Information Development Manager, Independent Age.
Independent Age is a charity supporting older people. We produce a wide range of information to help people live well and stay independent as they get older.
Involving older people
Part of our plan for this year was to create new content to support older people living with long-term health conditions. We’re not a charity with a medical focus, so the aim was to provide information to help people self-manage conditions and find out where to look for support and information, rather than provide medical advice. We wanted to involve older people from the start, to make sure we were creating information that would be valuable to them and address the questions they really cared about. We ran three focus groups in different parts of England with over-60s living with one or more long-term health conditions and asked them about:
- what they found particularly challenging about living with a long-term condition
- what help they’d been offered to cope with these challenges
- whether they felt well-informed about their condition and what information they’d been given
- what their main sources of information were
- whether they had researched their condition themselves and what methods they’d used for that
- anything they wished they had known when they were first diagnosed.
We also surveyed our Readers’ Panel – a group of people who volunteer to review our draft information (via email and post). We set this up two years ago and it has been very successful. We have over 500 members and they provide us with very thoughtful feedback.
Responses were wide-ranging and, while many weren’t surprising, it definitely helped us to hear people talk about these matters in a personal way. A few key points:
- Wording is critical, particularly around emotional impact of health conditions. When we asked focus group participants about their mental health or emotional wellbeing, many responded that that wasn’t a concern for them. However, when we changed the wording of the questions and asked them whether they were worried, anxious or concerned about how they were feeling, they were much more open about the emotional impact of health problems. This led us to call our information on emotional wellbeing ‘How you might be feeling’.
I’d like to understand what’s going on with me. Why I tend to take life so seriously and I’m a bit of a worrier. I don’t let it out. I don’t know. Is it just me? A man thing?
- It’s important to provide information in print as well as digital format. When we asked focus group participants whether they used online information, there was around a 50/50 split. Even among those who were using online information, many preferred print information. We produce print guides, also available to download and in other formats, and this seems to fit with what our audience wants.
I prefer a physical guide to online. I can use a computer but it’s not the same. I prefer hard copies.
- The amount of information available can be overwhelming. Most people we spoke to had done at least some research into their own condition but found it difficult to process. Getting conflicting information from different healthcare professionals and not getting information at the right time were also problems. People who were researching their condition online didn’t always know where to find reliable information or were worried by what they had read. We developed a webpage on finding reliable health information online to try to assist with this.
I know there’s a lot of information out there, but boy, trying to get all your ducks in a row is blooming difficult.
The problem with doing your own research is you can frighten yourself to death. You don’t read the good bits, you read the bad bits! And you can come up with the wrong diagnosis.
- A focus on living well and getting on with things is appreciated. We called our guide Living well with long-term health conditions, a title our Readers’ Panel helped us to choose. It’s easy to focus on problems, but the idea of getting on with your life and staying positive came up a lot.
I know what help I can get but to be honest I’d just rather get on with things myself. You’ve got to take it with a bit of a sense of humour.
Feedback from professionals
To ensure accuracy and understand the perspective of healthcare professionals, we had draft content reviewed by two GPs and the PIF Sounding Board, as well as our in-house-technical advisers.
The GPs checked our content plan, which they both found comprehensive, and also provided specific feedback on draft content. It was incredibly useful to get their perspective on how things work in practice, particularly as a number of concerns around medical appointments were raised by the focus group participants.
We hadn’t used the PIF Sounding Board before and found this to be a rewarding process. Our draft content was reviewed by three health information specialists, who each provided very detailed feedback. They covered a number of aspects, including structure, tone, readability and content. We found comments on how some information might be perceived by patients particularly useful – this helped us to rework some content to strike a more positive, practical tone in the guide. They also gave feedback on whether supplementary resources that we were thinking of creating would be useful – the idea of downloadable planners to prepare for medical appointments received positive feedback so we developed these.
The finished guide has information on:
- how your condition might affect you
- coping with challenges
- how you might be feeling
- getting the most out of medical appointments
- where to get support
- ways to help yourself.
You can order copies free from our website or by calling 0800 319 6789, or download them.
Let us know what you think!
Posted on Friday, 30th November 2018