We have shared information about our project on this website and in earlier blogs. As we move into the new year we wanted to bring you a little update about what we have done up until now with the project and our next steps.
The aim of our research is to find out more about the support that people with learning disabilities need to live in the community after moving out of hospital. We want to know about the things people find helpful, things they find difficult, and about changes over time. To do this, we’ve been interviewing people with learning disabilities themselves. However, we don’t just speak to people once, we do 4 interviews in total; two when we first meet them, and two more interviews one year later. We also meet participants at least once or twice before we even start interviewing. This is because we want to help participants to understand what taking part involves, so that they can make an informed decision about whether they want to take part in the research at all.
Our Interview Process
We’re currently interviewing participants both online and in-person, depending on the participant’s preferences and COVID rules. This process involves meeting with the participant at least 3 times, and it’s usually 4. In the first meeting, we go through some information about the research. The participant then has around a week to think about whether they would like to be involved, and they might discuss it with a family member, friend, or a member of staff. The next week, we meet to see if they would like to take part, and if yes, we plan for the interviews. At this point, we also discuss whether they would like a ‘key support person’ to be there for the second interview. We then meet one week later for the first interview, and the following week for the second interview. The whole process usually takes around 4 weeks as a minimum(!).
In the first interview, we ask participants questions about their daily routine, about what they like doing, people they live with, friends, family, choice, freedom, the community, and the impact of COVID. We also ask people to reflect on the process of moving out of hospital, and on things that they find helpful or difficult. However, if they’re not sure about how to answer a question, we just move on. In the second interview, we ask similar questions, but this time there is usually a key support person (KSP) present. We ask the questions to both the participant and the KSP, and the KSP answers as if they are the participant. For example, if we asked a question about what they like doing, they would say, ‘I like to play football’, instead of ‘he/she likes to play football’. After every question answered by the KSP, we check in with the participant to ask what they think. It’s very important to us that the interview is still about the participant, and they are still central to the process. We then ask the participant if it’s OK to contact them again one year later.
Where we’re at now
Fourteen people have been through the interview process described above. We’ve done 28 interviews in total! We’ve also started to contact people 1-year on, so that they can do 2 interviews again if they choose. For these interviews, we ask similar questions, but will also ask people about changes they’ve experienced over the past year.
A little about data analysis
As well as doing the interviews, we’re also analysing them to try and work out the things that help people with learning disabilities to stay living in the community after moving out of hospital. One thing we’ve noticed from the interviews is that people find it important for staff to really listen, so that they feel heard, understood, and believed. However, we will need to do more interviews and analysis to find out more about this, and about other things that people find helpful. We will keep you updated, thanks for reading!
If you have any feedback or want to get in touch please do! You can contact us using either the email address below or through any of our social media links.
