BSPED2023 Poster Presentations Miscellaneous/other 2 (7 abstracts)
Patient and public involvement: Techniques used to engage with children and young people about research in congenital adrenal hyperplasia
Joseph Tonge 1 , Irina Bacila 1 , Nicki Barker 2 , Muniba Aslam 2 , Eliza Salim 3 , James Walsh 4 , Bob Phillips 5,6 , Nils Krone 1,2 & Neil Lawrence 1,2
1The University of Sheffield, Sheffield, UK; 2Sheffield Children’s Hospital, Sheffield, UK; 3Oasis Academy Don Valley, Sheffield, UK; 4Notre Dame High School, Sheffield, UK; 5The University of York, York, UK; 6Leeds Children’s Hospital, Leeds, UK
Background: Incorporating the ideas and views of children and young people (CYP) with endocrine conditions from early stages in the research life cycle will increase the benefit for patients and contribute to high impact research.
Methods: We conducted two days of patient and public involvement (PPI) sessions with patients from a tertiary endocrine centre who are living with Congenital Adrenal Hypoplasia (CAH). We explored our shared understanding of the important areas of research in CAH, and the barriers CYP experience when engaging with research and aspects of their treatment. We used games and exercises to help the CYP relax dependent upon their age and preferences on the day. Funding was obtained via a PPI grant from the National Institute for Health and Social Care Research via the Sheffield Research and Design Service.
Results: Eleven CYP between seven and 22 years old took part, accompanied by carers where appropriate. Each was given a £50 shopping voucher and travel costs to compensate for a two-hour event. The most successful activities in those aged seven to ten years was a group guess-the-drawing game and construction of ‘ideal hospitals’ from plastic construction blocks. Those aged 13 to 16 years enjoyed engaging with a ‘guess the soft drink’ game, as well as a spaghetti and marshmallow construction challenge. Although engagement in this group was variable, participants responded well to a relaxed environment with minimal pressure to engage. These activities provided ice-breaking opportunities and the ability to open up discussion about CAH and the different aspects of research that are carried out in our centre. Older participants between 17 and 22 years were happy to engage in a focus group about the challenges of CAH and research into the condition, as well as discussion about ways to engage and put younger participants at ease.
Conclusions: Patient and public involvement is best conducted in children and young people with the help of games and activities to help participants to relax and engage. We present here some basic techniques and activities that have worked well to help advise on the direction of research into a rare disease.
Article tools
My recent searches
My recently viewed abstracts
Authors
Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
© Bioscientifica 2024 |
Privacy policy |
Cookie settings
BiosciAbstracts
Bioscientifica Abstracts is the gateway to a series of products that provide a permanent, citable record of abstracts for biomedical and life science conferences.
Find out more