Expert by experience activity by people with chronic health conditions
Research type
Research Study
Full title
The Impact of Involving Young People with Chronic Health Conditions as ‘Experts by Experience’: An Exploration
IRAS ID
266383
Contact name
Rose Stewart
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
0 years, 6 months, 29 days
Research summary
What is the Personal Impact of Expert by Experience Activity for Young People with Chronic Health Conditions?
The proposed study seeks to explore the personal impact of involving young people with chronic health conditions, such as Type 1 diabetes, in expert by experience (EBE) activity. EBE activity may involve public speaking about their condition, staff training, or service development. Existent research typically focuses on benefits of EBE activity for services/organisations, whilst the impact of the work on EBEs themselves appears largely overlooked. The involvement of young people with chronic health conditions as EBE in services in Wales is a relatively novel concept and is not routinely used. Anecdotally, such involvement appears to positively impact on self-perception and condition management. Consequently, the proposed study seeks to answer this research question:
‘How does involving young people with chronic health conditions in EBE activity within their services impact on their self-perception and management of their condition?’
This is an important research area given the investment required from EBEs by services. It may inform the evidence base regarding how EBE involvement could be beneficial for EBEs themselves. The study proposes to recruit six to ten young adults who have been involved in EBE activity with chronic physical health services. Data will be gathered via semi-structured interviews, lasting approximately one hour. Interviews will explore participants’ experiences of being involved as EBE, how this may have impacted on their sense of identity as a person with a chronic condition, and how it may have impacted on how their condition management. Interviews will take place on NHS property (e.g. the North Wales Clinical Research Centre, GP surgeries, diabetes centres), or home visits could be offered subject to risk assessment. Alternatively, interviews could be conducted over the telephone or video call according to participant preference.REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
19/NE/0304
Date of REC Opinion
2 Oct 2019
REC opinion
Favourable Opinion