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Shalim Ali at OU conference collecting research award.

What is ‘personal impact’ in research? A spotlight on the experiences of our co-leaders and photovoice participants

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In this blog, we share some of the fantastic personal impacts experienced by our co-leaders; B, Shalim and Stuart, and our photovoice participants; M and Oliver, due to their involvement in this project.

Stuart is smiling and standing in front of the feeling at home interactive board.

Impact in research

When we discuss ‘impact’, we can separate academic impact from non-academic impact. Academic impact refers to a research project’s impact within academia, for example, by publishing research papers, and adding to the knowledge within the academic community.

Non-academic impact refers to the impact of research in broader society. Impact has been defined as an effect on, change or benefit to the economy, society, culture, public services, health, the environment, or quality of life, beyond academia. It is important that research benefits wider society, individuals, organisations, or even nations beyond the academic sphere, to achieve a meaningful and positive impact in the community.

We wanted to explore how our Feeling at Home study had improved aspects of our community, such as our skills, policies, and health.

Cartoon of a diverse group of people within a community standing together

The personal impacts of the Feeling at Home project

Here we share the positive, personal impacts that the Feeling at Home project has had for our co-leaders and photovoice participants, in their own words. These impacts have included gaining new skills, social networks, and knowledge, showing how research can impact individual people as well as communities.

B’s experience

B, who has lived experience of a learning disability, was one of the three co-leaders of our exhibitions and photovoice group. His role involved supporting people to use their cameras and facilitating the group sessions.

Has your role on the project led to any positive impact? If so, how?

B: Yes. It was the first job application I did, and my first interview. It helped me get my role as a volunteer with George Shearing Youth Club. I have more confidence with people and with helping people with learning disabilities like me. I have more confidence speaking in public (and I did this in the opening presentation at the Science Gallery). I have realised how lucky I am in my home and my support. I have met lovely new people and learned new things. I have also visited new places.

Stuart’s experience

Stuart, who has lived experience of a learning disability, was also one of the three co-leaders of our exhibitions and photovoice groups. His role involved taking photographs, supporting people with using their cameras and facilitating the group sessions.

Has your role on the project led to any positive impact? If so, how? 

Stuart: [I have learned] to take my time with the camera, sometimes my photos come out a bit blurred, so take my time a bit more. I also direct my own videos as well. Take my time with photos and figure out what to take photo wise. [It has] made me happier in myself. Used to be a bit down before but now I’m happy again. Through meeting people and having more things to do.

Shalim’s experience

Shalim is a Feeling at Home project research team member and an expert by experience, quality-checking residential living for the CQC. Shalim was also co-leader of a London photovoice group and taught individuals how to use photovoice methods to explore their ideas about home.

Has your role on the project led to any positive impact? If so, how? 

Shalim: Oh yeah, my Feeling at Home project has made so many connections with the group, the researchers, and I’m really grateful to be part of the researchers. Really handy. And I’m really, I’m really thankful that they’ve offered me to go to Finland in September. I just got my scholarship from Finland, so I’m really grateful to be part of that research and I’ve never gone to Finland.

You can keep up to date with Shalim’s activities by following Shalim’s blog.

Shalim happily collecting his award at the Open University conference.

Shalim Ali received the Alan Armstrong Memorial Prize at the Open University’s Social History of Learning Disabilities conference, 2023.

 

We also spoke to M and Oliver, who both participated in our photovoice groups. To learn more about the photovoice methodology, have a read of our blog post discussing what photovoice is.

M’s experience

Why did you join the Feeling at Home project?

I thought it would be interesting. Photography is something I didn’t really know how to do. The topic of home is interesting too. I didn’t really see this place as a home, but I suppose it is. It’s becoming a home now, but where I lived before was more of a home.

What have you got out of the project?

Loads of things! You know, I’ve learnt how to use the camera, I’ve learnt how to focus. It’s just been interesting… I didn’t like the fact my room was too small but I’m getting more organised in it now. The photography group gave me ideas about how to get the room sorted. I am getting myself a wardrobe.

Oliver’s experience

Oliver, who has lived experience of supported living got with the Feeling at Home project because he was keen to try something new and meet new people. Oliver also wanted to learn how to use a camera. He had never used a digital camera before – only on his mobile phone. He has been saving up for two years to go on holiday to Australia and is excited to use his camera and new photography skills there too.

What he got out of the project

As well as developing his photography skills, Oliver says he was interested to learn, “what helps me feel at home”. The project came at a good time for Oliver: as he plans his move into a new flat with a friend, he has been able to think about what is important to him in creating a homely place. For example, Oliver is passionate sports player and fan, and having his trophies in his room makes him feel at home – he is proud of his achievements. He also realised that he wanted to move somewhere that is close to his sporting interests and activities.

 

Visitors at the Brighton exhibition looking at photographs and chatting to Deborah and Tony.

Have you been a part of the Feeling at Home project or attended any of our exhibitions? If so, we would love to know about your experiences, and any impact the project has had for you; get in touch and let us know!

Take a look at our events page to see where the travelling Feeling at Home exhibition is next. Or to see the images online, visit our exhibitions page.

Six things we learnt from our photovoice groups

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Are you writing a proposal for a photovoice or participatory photography research project with people with learning disabilities? Or just about to begin data collection? We have now come to end of our photovoice focus groups. It has been a wonderful but, without a doubt, challenging experience…

Through the photovoice groups, our participants explored what helped them feel at home where they live, and what got in the way of that. You can read more about the background of the project on  our website. We ran three groups, two in London and one Brighton, for 9 weeks. After the third session, we had a break of two weeks in which the group leaders visited each participant in their home and supported them to take photos. Each group had a group leader who was an expert by experience.

Participant and facilitator in photovoice group using communication aid, laughing.

What did we learn about the process of collecting data for a photovoice project? We put our heads together and came up with the following key tips. We hope they are of use!

1. Think about how to make the project accessible to your participants and experts by experience from the beginning

Running the Groups

Working with our Expert by Experience group leaders was key to understanding how our groups could be structured and how the information we shared could be presented accessibly. This included checking what kind of activities people find interesting and gauging how long each activity should last.

 

For one group, we produced an Easy Read PowerPoint presentation for each session. This was as much for group leaders to remember and follow what we had planned, as it was for the participants. This group had access to a large TV which each participant could easily see, so participants followed and engaged well with what we presented. It was particularly useful for one participant who had limited sight. We used these Easy Read PowerPoints particularly in the earlier sessions to talk about language we use to talk about images, and do group work around photo dialogue.

 

The other groups were happier using printed-out resources. For each group we had a set of colour A4 photos of a whole range of subjects, which we used to explain some key words we use to talk about images. These photos were collected from online photo banks such as Unsplash.com. We were keen to reflect the diversity of the groups, so we also sourced photos from photosymbols.com. In the later sessions, we also printed the participants’ photos in this large format, which they seemed to really appreciate.

 

We spent some time thinking about how some of the words we used to describe images (visual literacy) could be explained in an easier way, and compiled a glossary with images for each group. This was not meant to act as a strict definition, but rather be useful for participants who could read but also useful for group leaders to be able to explain easily and quickly what each term meant.

 

Cameras

When it came to introducing the cameras to participants, we produced a simple Easy Read A5 pamphlet with key information about the camera. We chose a simple ‘point and click’ camera with a large viewing screen on the back. This was one of the simplest cameras on the market that we could find at the time. However, it still proved challenging for some participants. The ‘reviewing mode’ of the camera where participants could view the photos they had taken on their camera, seemed quite difficult for some participants to access. We spent some time going over this with people but sourced some bumpons from RNIB to make this button stand out on the camera and easier for people to press. Bumpons are small plastic adhesive buttons. In retrospect, it might have been a good idea to bring some sample cameras (including iPad and phone) to the first meeting with the participant where we could explore which one might be the easiest to use.

 

To reduce any work for participants and save time, we had already charged each camera, put in the memory card, added the hand strap, and changed the setting to ‘Simple Mode’. This setting was very helpful as it omitted all the extra text on the screen, which could be confusing. Although we spent some time getting used to the camera in the groups, it did take a few weeks for participants to feel comfortable taking photos, and some participants always needed support when using the camera. We gave each participant an Easy Read pamphlet to take home, where they could refer to the simplified instructions and images, perhaps with staff or family support.

2. Introduce the idea of the exhibition at the beginning

Although not all photovoice studies include an exhibition, for us, it was important to treat our participants’ work as art. As such, a key aspect of our project is the Feeling at Home exhibition, launched in Brighton in September, and then touring other venues culminating in a show in London. We see this as a fundamental way to engage the public, policymakers, housing organisations and others with the issue of homeliness in care homes and supported living accommodation – an issue which is often overlooked.

Although we lightly introduced the idea of the exhibition at the beginning, if we ran the project again, we would choose to spend longer exploring with participants what it means to exhibit work, what the goals are, and what we want exhibition visitors to think about. Many of our participants had never attended an exhibition before – something which had surprised us – and some participants were perhaps not sure by the end of the groups what an exhibition would entail. Having since spoken to other photovoice researchers about exhibitions, it seems a lack of familiarity with galleries, exhibitions, public displays is not unusual in participants. One approach to dealing with this is to have a trial exhibition within the group setting, or in a familiar environment. This allows participants to become familiar with the discourses and the cultural norms of exhibitions before faced with the real thing. And perhaps while doing so, it would provide an opportunity to think about how to make the exhibition accessible from the outset – for both visitors and the exhibitors. Producing accessible captions (this could be Braille, large print, Easy Read, audio for a combination of these), audio descriptions of images, images/works hung at a height that is accessible for wheelchair users, accessible exhibition introductory texts and images, and an array of accessible feedback mechanisms can take time and thought. Our co-facilitators, participants and advisory group members have been helpful in shaping these ideas through a continuous dialogue about what may be needed.  Shape Arts have written a very useful guide to give you ideas and resources in this area.

Related to this, is the need to consider the venue for the exhibition. Again, it was important the venue was accessible, could accommodate wheelchair users, was central and close to public transport. We also wanted to hold the exhibition in a place that already had a high footfall as encouraging people to attend an exhibition on a theme they are not already familiar with can be challenging. We are lucky enough to count Quiet Down There as creative partners, who, since the inception of the project, have been able to guide us expertly through the key issues of putting on an exhibition. This has included when, where and how to promote the exhibition, how to co-curate the exhibition (a whole new blog), how to work with local disability arts organisations and how to translate the exhibition into a travelling show to display at other venues.

 

3. Allow more time than you think!

We knew that many of our participants were putting other activities and interest groups on hold to join our Feeling at Home groups, and we were keen to retain participants’ enthusiasm for the project, so we planned the groups to be no longer than 10 sessions. We were conscious however that there was a lot to cover in sharing the photovoice method, including talking about what ‘home’ can mean, introducing visual grammar, practising camera skills, taking photos, and writing captions. I think all our group leaders felt that the groups could have gone on for longer, that participants were still keen to be involved, and that we could have facilitated further discussions around what a ‘homely’ place means.

 

Furthermore, some sessions were cancelled due to illness, train strikes, and travel disruption. Participants also missed the odd session due to GP appointments, forgetting, staffing issues. This put pressure on us to cover more in some sessions than we would have preferred to. So, our advice here would be to simply allow more weeks than you think is needed. This will also mean you have more time to build trust and get to know people’s communicative styles and access needs more. If you feel the group sessions are going well and to time, you could then have a break and spend time visiting people individually in their homes, if appropriate.

 

 4. Building trust 

We found that modelling the photovoice activities was helpful. For example, by bringing in photos of our own homes, displaying them to the groups and explaining how these photos showed things that helped us to feel at home and how they stopped us from feeling ‘at home’, in doing so expanding on what feeling at home meant to us as individuals. For example, a full shelf of cookbooks meant to one group leader that (finally) having space to cook from scratch meant that she had control over her food and nutrition, something she enjoyed. Home here meant agency and space to and time to do enjoyable activities.  Another image showed a sofa in front of a window looking onto a residential street. The facilitator explained that she was unable to fully relax as she felt exposed to onlookers unless the curtains were closed. Thus ‘home’ in this case meant being able to relax.

The group were then encouraged to respond to questions based on the SHoWed method. We had printed out some large print questions (which we had tried to simplify into an easier to read format) to prompt participants if they needed it. We then spent some time considering ‘what could we do about this situation?’. This proved effective, as participants made useful suggestions to the facilitator to make it more homely (get some nets up!). Sharing images of our homes – warts and all – enabled us to feel (to a certain extent) how it was to be a photovoice participant and to open up our home lives for inspection.

We tried to spend about ten minutes at the beginning of each session doing an ice breaker to build trust. These took a variety of different forms, from asking participants to pick a photo which told other group members how they felt that day, to simply saying what we did at the weekend, to choosing a song from Spotify – a particularly popular choice! Our sessions were then broken up into short 10–15-minute activities which helped everyone keep focused. We found that participants sometimes needed more prompting than we anticipated, perhaps due to feeling uncomfortable, so we explored working in different ways – in small groups, in pairs for example, and mixing up the groups and support staff. We also explored using written prompt question and breaking up tasks into smaller ones – so people could really focus. We tried to let people know what was planned for the group (sometimes this was shared in as an Easy Read agenda). This was helpful for both participants and group leaders and seemed to help people feel more at ease as they knew what was coming up. 

5. Good admin!

A few key administrative tasks were helpful to increase participation and avoid confusion. We found that people would sometimes forget to attend (perhaps because it was a temporary group or because breaks in the sessions understandably confused people). Group leaders got into the habit of reminding participants the evening before group sessions. We also tried to print out all the meeting dates and times on a flyer to take home, although these did change.

It is helpful to keep a record of how participants travel to the group and explore what support they will need, if any, from the facilitators. We found that some participants were independent travellers, and after a couple of sessions of travelling to the group with someone, were able to later travel on their own. Other participants had their own vehicles, while others were reliant on day service transport, which was sometimes delayed due to staff shortages, a particular issue for us due to Covid.

Often people need reminders that the group is on, will need support with taxis, directions for new staff etc.

It was also helpful to get into the habit of dealing with all data immediately after the group finished – uploading video or audio recordings, filing away any consent forms, uploading any images. Having three groups meant that we have a lot of data and information so keeping all the data together, safe, and findable has been key.

 

6. Making roles clear

We realised that spending some time at the beginning clearly explaining what role support staff should take would have been helpful. Some participants brought support staff with them, and we think initially support staff were confused by how they should interact in the group. The goal of the research is to hear from participants about their experiences: unfortunately, sometimes support staff became too involved and gave their opinion on how they thought the participant felt about home. Although that is of course also helpful to know (we also interviewed staff for the project), it was not the aim of these group sessions.

Therefore, we suggest really spending some time talking about this as group at the beginning, and perhaps adding this to the ground rules.

We hope our experiences have been helpful. It would be great to connect and hear how your research goes – feel free to get in touch!

photo of Stu at the Feeling at Home exhibition

Stu’s blog: my work with Feeling at Home

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photo of Stu at the Feeling at Home exhibition

Stuart Leaney co-led the Brighton photovoice group, together with Tony Levitan, supporting our participants with learning disabilities to explore how they feel about their homes. Stu’s role as co-leader was really varied. He and Tony introduced the topic of homeliness through creative activities, supported people to talk about and describe images, and helped people to use the cameras. Finally, they visited each participant in their home to support them to take photos of things that helped them feel at home, and things that got in the way of it. Below, Stu tells Katy about how he got involved in the project…

I got involved in the Feeling at Home project through the Aldingbourne Trust. It’s a support service that helps people with learning disabilities get into work. I saw the Feeling at Home website and found Tony’s details – I spoke to Tony to chat about the role. A few days later I had the interview, I really enjoyed it. Tony called me and offered the job. I felt delighted and a bit overwhelmed at first. But then I spoke to my family about the job, and they helped me feel less overwhelmed. Tony and I met up at a café Nero and he signed me as a King’s College London staff member.

I really enjoyed teaching the participants to use the cameras, and to work as a team. And, seeing the finished article, the photos! I made new friends through the group too, and we still meet up now. I’ve had a brilliant time working with everybody. It was sometimes hard when everyone spoke at once, so we asked people to put their hands up and be respectful of each other. We said ‘one at a time’. Sometimes we’d have a one-to-one chat with participants to help them manage how to work together. I really enjoyed the sessions working with the artists, Quiet Down There. We worked in small groups and then came back together to share ideas about how the exhibition would look. We had different ideas so had to compromise and find something we all liked.

The exhibition looks great and has a really chilled out atmosphere. I have really enjoyed invigilating the exhibition. I just want to say thank you very much the opportunity.

What is photovoice?

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Photovoice* is an important part of the Feeling at Home project. You might be wondering what it is all about.

The clue is in the name! Photovoice is a research method where people tell their stories, share their experiences and work towards improving their lives through photography.  This method was created by two researchers called Caroline Wang and Mary Ann Burris in the 1990s.  They were doing research with women in rural China and decided to use photography with their participants so that women could capture and reflect on key issues in their everyday lives.  Since then, photovoice has been used as a research method with many other groups who may struggle to get their voices heard by policy makers and in the political arena.

Photovoice — Frequently Asked Questions

Why use photography?

A key principle of photovoice is that ‘images teach’.  Photographs can show aspects of people’s everyday lives that are hidden or overlooked.  The person taking the photo can focus on what is important to them and document this for others to see and take note of.

Is photovoice suitable for people with learning disabilities?

Yes.  The approach works well with people who might otherwise struggle to use words to explain what is important to them.

Do participants get training to take photos?

Yes.  When people come together in photovoice groups the first few sessions focus on how to take photographs, understanding the ethics of taking photos in shared and public spaces and including people in photos.  We also practice ‘reading’ photographs – understanding how photographic techniques can be selected to tell a more impactful story, and reflecting on how photos can affect our thoughts, feelings, and behaviours.

What cameras do participants use?

We give each participant an easy to use ‘point and shoot’ digital camera.  This is theirs to keep.

How can people with higher support needs be involved in photovoice?

Some people might not be able to handle a camera on their own.  For them, taking photos will be more of a shared project with the person, a supporter and a researcher joining with the person, following their verbal and non-verbal indications of what they are interested in to guide decisions about what to photograph.

Photovoice is identified as ‘participatory action research’ (PAR).  What does this mean?

In our project the participants do not just take the photos and then hand them over to the academic researchers to make sense of.  The process of interpreting and making collective meaning from the photos is co-produced by the participants and the researchers in a collaborative process in the photovoice groups.  The focus is on identifying the participants’ priorities for change – deciding what elements shown in the photographs need to be improved.

How can photovoice projects influence policy and practice?

An important part of the Feeling at Home project will be a public exhibition of the participants’ photos. Participants will decide on a caption for each of their photos to help viewers understand what the photograph means.  We will invite policy makers, practitioners, and other service users and their supporters to the exhibition which will also be open to the public and will travel to other sites around the country.  The power of the exhibition will be the way it provides a view into the everyday living environments of people with learning disabilities – spaces that are usually ‘hidden’ behind closed doors. People who come to the exhibition will have the opportunity to add their own responses to what they see and think about what changes need to be made.

In our project the outputs from the photovoice groups and exhibition will be resources for residential support staff and policy makers to help them bring about the changes that our participants want to see in their lives.

How can I find out more about photovoice?

We will be completing a review of research that has used photovoice with people with learning disabilities as part of the Feeling at Home project.  You can find a list of photovoice research articles in the Resources section, but a great place to start is this article by Linda Liebenberg.  If you want to talk to us about your own photovoice project, please get in touch!

*In this blog I am talking about photovoice, which is a research method increasingly used in health and social care research.  I would like to distinguish this method from the trademarked name used by the PhotoVoice charity (www.PhotoVoice.org) which provides training and undertakes community projects using this approach.  They are a fantastic organisation and we are very grateful for the training and advice they have provided to the Feeling at Home research team.