a man on a laptop in a Zoom meeting

Let’s speak about feeling at home – a webinar on homeliness in group homes, Andy Power

It’s the familiar smells and sounds that get me when I return home after being away. The sense of ‘feeling at home’ where we live is something most people cherish. For some, this feeling comes from the enjoyment of pets or the collection of old photos under the stairs.

What does home mean?

Home is more than a place. It is an idea and an imaginary that is imbued with feelings. So begins the book simply titled ‘Home’ by Alison Blunt and Robyn Dowling about the meaning of home. For many of us, home is imbued with feelings of belonging, comfort, and safety.  However, for some people, including those with learning disabilities in residential care or ‘group home’ settings, these feelings can be entirely absent. Indeed, for some, the home can be imbued with a sense of fear, alienation, and violence.

Despite change toward more individualised support, ‘group homes’ remain one of the main forms of accommodation for people with severe and profound learning disability. Despite looking no different to other houses in the street, the group home is defined as accommodation for between four and six people, where extensive or pervasive paid staff support is provided to the residents, both in the home, and when leaving it to use community-based settings.

For this reason, the group home is a ‘workplace’ with its own workplace culture and regulations. Consequently, group home staff and residents face complex tensions over professional and personal boundaries and group and individual demands.

While the sector faces an array of quality standards, sadly the sense of ‘feeling at home’ is not an outcome that is measured or spoken about. Once basic needs are met, there is no certainty that feeling at home is an experience that is cultivated.

Sharing what we have learnt

To help kickstart this conversation, and get people speaking about it, our collaborative project hosted a webinar on the subject, where we shared insights from research and policy. In attendance was an array of group home managers, NHS staff, and local authorities.

Christine Bigby, a leading guru in group home research, provided our opening address, reflecting on what has changed over the last 10 years since her seminal book on Group Homes for Adults with Learning Disabilities. Christine’s presentation served to highlight the building blocks of a service culture which can determine residents’ positive experiences.

Drawing on the insights of social geography, I shared some of the ways that people can cultivate a sense of home, through everyday routines, objects, and home-making practices. Home does not simply exist, but is made. In response, many delegates shared their own accounts of what practices and objects made them feel at home.

In helping to shape the sector, the policy landscape remains crucial. Deborah Chinn highlighted how the long-held policy aspiration of an ordinary life on an ordinary street remains hollow and perhaps co-opted. In its wake, policy has continually failed to create accountability for group homes providers being ‘homely’.

Sadly, one of the most recalcitrant issues is the high turnover by staff in the sector, a point highlighted by Tony Levitan in his presentation about evidence-based frameworks for improving quality in residential support. Indeed, for a quarter of group home providers, this can be as many as losing 6 out of 20 staff per year.

One glimmer of hope has been the growing acceptance of the role of experts by experience, in this case, people with learning disabilities, who serve as ‘quality checkers’ of group home settings. While in its infancy, the growth of user-led models of quality checking has been an important development in creating a more empowering culture for residents. As part of our study, Shalim Ali and Katy Brickley explored the many different variations that have emerged and sought to distil the important factors in shaping this practice.

We also heard from our expert panel, which included experts from the field, academics, our Advisory Group members, service providers and CQC staff.

The webinar took a small step along our journey, by getting people speaking about feeling at home in the context of group homes – an important message to take home.

How we made our research participant information more accessible

How can people who are asked to take part in a research project find out if it’s right for them?

Making sure people understand what a research project is about is really important. If people don’t understand what we want them to do, then they cannot decide if they want to take part.

In this blog post, we tell you what we have done to make information about the Feeling at Home research project more accessible for the people taking part. We hope that it will help other researchers to make their information more accessible, too.

In our Feeling at Home project, we want to find out what helps people with learning disabilities who live in a group home feel ‘more at home’. We know that many of the people taking part in our project have learning disabilities and might find reading difficult.

To help our participants understand our information, we made our leaflets in Easy Read. But we thought some participants might also have sensory impairments, too. For example, being sight or hearing impaired. Or perhaps they cannot access written information at all.

With the help of two King’s College London interns and the brilliant OpenStoryTellers team, we decided to make a participant information video to tell people what they need to know. This is what we asked ourselves…

How can we structure the video to make it more accessible?

We decided to write the script as a conversation between the researcher and someone thinking about taking part.

This means the audience can listen in on the questions someone might have about the project.

Making it a conversation also means that the information is organised in smaller sections – a question and a simple answer.

We also split our original script into three smaller sections to make three ‘mini’ videos. This should make it easier for the listener to understand. If they want to rewind the video, it should also make it easier to find the information they want.

We asked a member of the OpenStoryTellers team to voice the participant’s side of the conversation to learn from their expertise. It also helped us know if the script was easy to understand.

Finally, we included a researcher in the video so participants can meet one of the project team.

How can we use more accessible language?

Next, we thought about the language we wanted to use. We tried to write the script in accessible and easy language, similar to how Easy Read is written. We have used shorter sentences, simple grammar and tried to use an ‘active’ voice. This means making it clear who is doing the action in a sentence. We also tried to avoid using difficult words and abbreviations. When we have used them, we have explained what they mean in simple language.

What images would help people to understand our project?

We were very keen to show people exactly what taking part in the research project would look like. For example, we wanted to video someone taking photos in their home. Or someone joining in a group conversation about what home means to them.

However, we did not want to put the people in the videos in any danger of getting Covid and decided it would be better not to take this approach. Instead, the interns came up with a good alternative. They put Photosymbol images together in a creative way to help visually explain the words spoken in the video. We think this has worked well.

How can we make our videos accessible for people who are hearing impaired?

We added subtitles to our video to make the information more accessible for people who cannot hear. We did this using YouTube’s automatic subtitle function, which automatically detects the speech in the videos and creates the subtitles. Although this cuts down a lot of the work, it’s important to check through the subtitle text. YouTube explains how to do this on its help page about editing and removing captions. For example, we changed incorrectly spelled names, added question marks and punctuation to make it easier to read, and checked contact details.

So what do you think?

Video 1 What is the research about?

Video 2 What happens if I take part in the research?

Video 3 Should I take part in the research?

What do you think about our ideas? Perhaps there are other things we can do to make it more accessible? We would love to have your feedback. Let us know in the comments section below.

If you want to find out about other research projects the are looking at ways of making information more accessible to participants, visit the Capacity, Consent and Autonomy project by Dr Amy Russell.