Using creative approaches to enable patient and public involvement in a realist review: lessons from the SHADOW study

Dr Tamsin Fisher (Researcher), Anna Hough (User Support Worker), Jane Southam (Public contributor), Dr Tom Kingstone (Researcher) at Keele University

An overview of your project

Around one in every four-to-five people experience anxiety and depression, regardless of age. However, older adults (defined here as people over 60 years of age) are less likely to seek advice about their mental health from a healthcare professional.

Through the SHADOW study, we set out to understand more about interventions designed to support older adults to seek help for anxiety and depression. We wanted to know who these interventions work for, how and why they work. To answer these questions, we assessed the published evidence using a realist review approach.

The study was informed by public members - with lived experience of mental health problems in older age - and other expert advisors working in the voluntary and community sector (inc. Beth Johnson Foundation, Age UK, National Forum for Health and Wellbeing). We used the NIHR standards for public involvement to inform our practices.

Who was involved and how

We established a Public Partnership Group (PPG) of six people with lived experience. Jane was the lead PPG member and co-applicant on the grant. Anna helped identify relevant public members, coordinated all meetings, processed reimbursements, and provided all-round support to members. The PPG met four times over the course of the study with meetings held online and facilitated by Tom and Tamsin.

To help the team develop initial candidate theories - ways to explain help-seeking behaviours in this population – we created a storyboard activity. The activity involved members working together to develop fictitious older adult characters and stories to demonstrate help-seeking challenges and potential solutions. The activity was structured as follows:

1. Create a diverse range of characters and stories to reflect varied lived experiences and contextual factors (e.g. names, ages, living situations, access to resources)
2. Describe character-specific barriers to help-seeking (e.g. access to services, mobility concerns, mental health literacy)
3. Identify “tipping points” - These are the points at which each character would decide (or have it decided for them) that help was needed
4. Imagine preferred sources of help - informal or formal support that would seem to match the individual character and their situation
5. Describe outcomes - Public contributors felt it was important to establish ‘stories of hope’ for each character and to focus on positive outcomes of help-seeking.

Information was captured by Tamsin using the online whiteboard in MS Teams.

What you hoped to achieve through this approach

Realist review methods include several tricky concepts and processes. It was hoped that the storyboard technique would support explanation and understanding of review methods, promote inclusion and a sense of meaningful contribution among public contributors, and enable collaboration through creativity.

The outcomes and impact of the involvement activity

Our approach to patient and public involvement in this research was strengthened by creative methods. The storyboard technique informed the development of candidate theories and context-mechanism-outcome configurations – two key parts of the analytic process in realist reviews. The storyboards also promoted equity, diversity and inclusion principles by ensuring that each public contributor had a character they could identify with, at least at some level. Public members enjoyed the meetings and developing stories of hope (as suggested by the members); this gave meetings a positive and uplifting feel.

The characters have since been used in dissemination and wider engagement activities. It was suggested by the public members that one of the fictitious characters (Tilly) should be used in academic presentations. The team agreed and so “Tilly on Tour” became a running theme in our dissemination – Tilly made an appearance at the Society for Academic Primary Care (SAPC) Mental Health conference (Keele, May 2024) and SAPC Annual Scientific Meeting (Bristol, July 2024). Another character, Henry provided the basis for a video animation, created with a digital design company. Here is a link to the video (Linked here).[HJ1] 

Jane shared the following reflection:

“I believe that this project was a success as researchers included PPG members at every stage. This enabled the findings and analysis of the evidence carried out by the researchers to be married together with the lived experience of the PPG members.  The use of the storyboard animation allowed PPG members to ensure inclusivity of under-served communities and satisfied their need for a visual, engaging, uplifting and accessible way of sharing the project findings. Everyone knows a Tilly so her character was so relatable and so she was ideal to take on tour.”

Any advice you would offer to others 

Creative approaches like storyboarding can be an effective way of enabling patient and public involvement in research, particularly where study methods are complex (e.g. realist reviews). Creative approaches are not for everyone and may not suit specific topics or contexts. Where they feel appropriate, be brave and give these a go!

Next steps for your project

We have completed the SHADOW study and are in the process of writing up for publication. We aim to take our study findings further with a future grant that looks at intervention development to promote help-seeking for mental health problems in older adults.

Acknowledgements

This project was funded by the NIHR [School for Primary care Research. Ref: 642]. The views expressed are those of the researchers and not necessarily those of the NIHR or the Department of Health and Social Care.

SHADOW co-investigators Professor Carolyn Chew-Graham, Professor Sam Hider and Dr Nadia Corp from Keele University, and Professor Geoff Wong from University of Oxford

The SHADOW study Public Partnership Group (PPG) members

The Keele Public Partnership team for support in coordinating the PPG