Library of Lived Experience
Aims
This study explored living libraries – a model for sharing personal experiences - as a strategy to support mental health. It aimed to develop a theoretical explanation and implementation guide.
Overview
Project Lead, Professor Fiona Lobban explains:
A Library of Lived Experience for Mental Health involves people that have experienced mental health difficulties being ‘living books’, trained and supported to share their experiences in one-to-one conversations. Readers are people seeking to learn about mental health to help themselves or a loved one. They choose a book based on a short author summary and have a conversation with the author.
This study involved two linked workstreams. This first reviewed previous living libraries to find out what worked and the effects that they have on the Books and Readers who use them. In the second workstream, co-designed workshops were held with those who have personal or professional experience of mental health issues, living libraries or peer support. Sessions were well attended and included participants from the local NHS trust and mental health charities. Workshops focused on key issues for hosting an event, such as how to train people to share their stories safely. Creative methods were used to engage participants, including story writing activities and participatory art.
This resulted in the development of a framework to support others setting up Libraries of Lived Experience, including an implementation guide, community of practice and theory-informed evaluation framework.
Results and Outcomes
Tab Content: For Partners and Engagement
This study involved a partnership between Lancaster University and Lancashire and South Cumbria NHS Foundation Trust. For the Trust, this project represented an opportunity to develop the evidence base in mental health and explore a new model of support. For the University, it provided a way for researchers to collaborate with people who work in and use mental health support services, which is essential to ensuring that academic work translates into meaningful societal impact.
'Working with Lancaster University to develop the library of lived experience was a true partnership approach and real co-production across a sphere of backgrounds and interests, the leads really had people at the heart of the decisions making and utilised the lived experience of people to share their stories and educate others whilst breaking down stigma relating to mental health.’
Paul Jebb, Associate Chief Nurse, Patient Experience, Engagement & Safeguarding, Lancashire and South Cumbria NHS.
Lesley Whittaker, Senior Matron, Lancashire and South Cumbria NHS.
Tab Content: For Academics
Key learning from this study may be helpful for academics planning co-design research:
Embedding public and patient involvement (PPI) from the start of the project was key to its success. PPI advisors helped shape the funding application, were involved in co-designing the outputs, and helped with disseminating findings to the local community at a pilot library in Lancaster. This helped to ensure the project reflected the views of people with a wide range of mental health experiences and helped to create a network of people interested in carrying the work forward.
Making sure that there is a robust system for paying PPI advisors before a project starts is essential. Feedback from participants noted that prompt payment, at a level consistent with their contribution to the project, demonstrated that their contribution was valued by the study team. This also helped to create an atmosphere of genuine collaboration with PPI advisors and participants, whose expertise was valued equally to the expertise of academics and clinicians.
Planning for co-design should account for the reality that it takes time to build a team, generate trusting relationships, and engage in meaningful collaboration on research outputs. We found that this was made possible by monthly, two-hour meetings across the year long study.
While the study involved the collaboration of a large team involving academics, clinicians and experts by experience, having a members of staff work across the study and act as a single point of contact, able to provide information and support, helped draw the project together.
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