Older 'experts by experience' in the NHS. Version 1.
Research type
Research Study
Full title
Exploring the experience of older people contributing to NHS services as ‘experts by experience’
IRAS ID
332220
Contact name
Selina L Shaw
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
1 years, 3 months, 30 days
Research summary
Research Summary
This qualitative research project aims to explore what the experiences of older people are who contribute to service development and/or research in the NHS using a Grounded Theory approach. The study wants to explore these experiences from the viewpoint of older people who have lived experience of mental health, and what the impact of this is on their identity, wellbeing and to gain an understanding on what these experiences have meant to older people. This might help us learn more about the importance of this type of participation for older people and how to improve how we involve older people in the future.
NHS trusts value having people involved who have had first-hand experience of a problem and treatment. They understand the importance of having people having a say in how services are offered to others. However, older people, (over the age of 65), are often not included in these projects. Previous studies have found that some research includes an upper age limit. This means that older people are not asked to take part in the research and the voice of older people is not heard.
Participants are eligible if they are over the age of 65, have lived experience of mental health, and have contribute to service development and/or research in the NHS. Potential participants will be recruited from older people NHS mental health services and social media.
In this study I will interview older people over the age of 65 who have given their time to help in NHS service development or research. I will ask them to share their experiences and to find out what has worked, what has not and how helping has affected them personally. The interview will be approximately 60 minutes long, and there will be no follow up as part of this project.
Summary of Results
This research was carried out by Selina Shaw, trainee clinical psychologist, as part of their clinical psychology doctorate at the University of Manchester.
The purpose of this study was to understand the experiences of older adults who have lived experience of mental health difficulties and participate in ‘Expert by Experience’ (EbyE) roles in NHS mental health services.
This research was needed as there is a lack of understanding of older adults’ experiences in these roles.
In total, 9 participants took part in the study. There were 5 men, and 4 women, with an age range of 65-72 years that took part.
Our research found that an important part of being an older 'Expert by Experience' is feeling genuinely accepted and valued within NHS mental health services.
We identified several key themes around this that describe what it is like to be an older expert by experience:• Resources needed to perform the role - Participants identified their knowledge, personal skills and circumstances, self-awareness and the ability to contribute to NHS mental health services in a meaningful, non-tokenistic way to be important.
• Sense of togetherness with others – Many described being able to help and support others was a key motivator. Also working with service users, healthcare professionals and other experts by experience was enjoyable most of the time.
• Personal development in the role – Being an expert by experience offered opportunities to develop skills and knowledge, helping participants to feel included in the service.
• Impact of the expert by experience role – Participants shared how the work could sometimes impact their own wellbeing. Most participants enjoyed the role, and it gave them a renewed sense of purpose.
• Age and connection to age - A key finding was how participants’ relationship with their own age influenced how they experienced their role, sometimes offering unique perspectives and challenges.
This research has helped us better understand these experiences, which can guide future support and development for older experts by experience roles in mental health services.
This study has highlighted both mixed experiences to being involved in the role, and demonstrated that authenticity, feeling genuinely heard, valued and understood, was key to participants wellbeing and engagement in the role.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
24/NW/0186
Date of REC Opinion
25 Jun 2024
REC opinion
Favourable Opinion