‘Inspiring Stories’ with Kate Hough

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‘Inspiring Stories’ with Kate Hough

Research Fellow in Clinical and Experimental Sciences

This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine. 

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Using community engagement to raise awareness of better hearing and brain health. 

My name is Kate and I’m a research fellow. My research involves investigating the biological mechanisms of hearing loss and how the body interacts with hearing devices called cochlear implants.

Hearing loss can be acquired through our lifetime. Around 65% of people over the age of 60 experience some degree of hearing loss. Unaddressed hearing loss is associated with an increased risk of dementia, social isolation, and depression. Many people with hearing loss will face barriers when accessing information, community groups and services as often the space and content is not suitable for them. Understanding the barriers people with hearing loss face when accessing hearing healthcare is important for our research.

Nearly two years ago, in our research group, we set out to build an enduring and active patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. PPIE is about involving patients and members of the public in the conversations, and decisions we make, about research. You can read about our group on our website https://generic.wordpress.soton.ac.uk/all-ears/. As we started to build the group, we realised the need to increase the diversity of the group. We also identified a need to raise local awareness of hearing health among members of our community. Southampton has high measures of city-wide social deprivation which are associated with health disparities meaning people don’t have equal access to information, resources, and services to maintain their health. This is leading to more people living with hearing loss and dementia, a disease of the brain.

We designed a project to go into our local community and to explore and raise awareness of hearing loss, the benefits of hearing treatments such as hearing aids and cochlear implants in improving people’s overall health and wellbeing, and the links between hearing and dementia. The project was called SO-Together health: Working together in Southampton for better hearing and brain health. Our aim was to bring older members of the community together and start a conversation about hearing and brain health.

The project had three phases:

1. Building trust and relationships with local community groups.
2. Co-designing activities to take into the community groups to start a conversation.
3. Running the activities. 

To build links with local community groups, we planned to use networks and connections we already had so there was a baseline level of trust. We wanted to work with existing community groups in their environment where they felt most comfortable. I spent time visiting the groups on several occasions over a year and got involved with different activities. This helped to build trust with members of the groups. Activities included games, quizzes, crafts and even singing! As the community groups felt more comfortable with me, I started to talk about my research and initiate conversations to understand their thoughts on hearing and brain health.

To co-design the activities, I organised steering group meetings with community group leads and members of our PPIE group. Working together, we came up with activities to encourage discussion around hearing and brain health. This included a quiz and arts and crafts. Once the activities were designed, the final stage was to run the activities in the community groups. One activity was a clay modelling session at a local hard of hearing group called Let’s Communicate. We asked members to make a clay model to represent their experience of hearing loss. Many meaningful and thought-provoking models were made, and each person described the story behind their model to the group. The craft activity was an excellent way to encourage people to share their own experiences of hearing loss and the impact it was having on their lives.

A success of the project has been building new partnerships with members of our community. Through our shared passion, I have linked up with a hearing advocate called Steve Beal who has been supporting people who are hard of hearing, in and around Southampton, for the last 17 years. We will now work together on projects going forward. Another success has been bridging the gap between the university and the local community. Through taking the time to build trust and relationships, we now have 23 members from local community groups who have joined our PPIE group. This has broadened the membership and diversity of the group which is key to ensuring that the research we do is relevant for people from across the community. Over one year, we engaged with 303 members of our local community in conversations about hearing and brain health. We hope that through these conversations, we will have enabled people to make positive behaviour changes to improve their health.

A challenge of this work is the considerable time and effort required to build trust with members of the community. Trust can only be built gradually which requires visiting groups on multiple occasions and being open to get involved with different activities. For academics, this might mean coming out of your ‘research comfort zone’ and embracing a more creative and fun side.

My one piece of advice for community engagement is to be open-minded, compassionate and enter community groups as a friend or volunteer who is there to get to know the people and find out their story, not as a researcher who might need something from the group.  

We are gathering momentum and building upon this work so watch this space.

Thank you to the University of Southampton Public and Community Development Fund 2022/2023 for funding this project.