K Coy1, P Brock2, S Pomeroy3, J Cadogan4, K Beckett5. 1. Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, United Kingdom. Electronic address: Karen.coy@uhbristol.nhs.uk. 2. Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, United Kingdom. Electronic address: Paula.brock@nbt.nhs.uk. 3. Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, United Kingdom. Electronic address: Shirin.pomeroy@uhbristol.nhs.uk. 4. Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, United Kingdom. Electronic address: Julia.cadogan@uhbristol.nhs.uk. 5. University of the West of England, Bristol, United Kingdom. Electronic address: Kate2.Becket@uwe.ac.uk.
Abstract
BACKGROUND: The emotional impact after a child's burn injury is poorly understood. Greater insight into the emotional journey can aid services' ability to meet patients/families' needs. To bridge the gap, this study employed an abbreviated form of Experience Based Co-Design (EBCD) to explore the emotional/experiential aspects of moderate to severe burn injuries in children. METHOD: Following EBCD, parents and health professionals were invited to share their experiences. Interviews were analysed and a short film was produced and shown at a focus group event for health professionals and families. Both positive and negative aspects of the journey were identified along with potential service improvements. RESULTS: Families' journeys could be described by the following five distinct phases: life overturned, dawning reality, riding the emotional roller-coaster, aftershocks and, adapting to a new normal. Key areas for improvements were: communication, isolation, dressing changes and managing expectations. DISCUSSION: EBCD facilitated collaborative discussion between researchers, families and health professionals. Families felt empowered to shape the future of burn care and health professionals felt included. Study challenges were mainly in participant engagement and the scheduling of interviews and the focus event. Overall the study outcome was successful in generating ideas for service improvements, and the production of a training video for healthcare professionals.
BACKGROUND: The emotional impact after a child's burn injury is poorly understood. Greater insight into the emotional journey can aid services' ability to meet patients/families' needs. To bridge the gap, this study employed an abbreviated form of Experience Based Co-Design (EBCD) to explore the emotional/experiential aspects of moderate to severe burn injuries in children. METHOD: Following EBCD, parents and health professionals were invited to share their experiences. Interviews were analysed and a short film was produced and shown at a focus group event for health professionals and families. Both positive and negative aspects of the journey were identified along with potential service improvements. RESULTS: Families' journeys could be described by the following five distinct phases: life overturned, dawning reality, riding the emotional roller-coaster, aftershocks and, adapting to a new normal. Key areas for improvements were: communication, isolation, dressing changes and managing expectations. DISCUSSION: EBCD facilitated collaborative discussion between researchers, families and health professionals. Families felt empowered to shape the future of burn care and health professionals felt included. Study challenges were mainly in participant engagement and the scheduling of interviews and the focus event. Overall the study outcome was successful in generating ideas for service improvements, and the production of a training video for healthcare professionals.
Authors: Jane Chudleigh; Lynette Shakespeare; Pru Holder; Holly Chinnery; Gemma Hack; Tanya Gill; Rachel Gould; Kevin W Southern; Ellinor K Olander; Stephen Morris; James R Bonham; Alan Simpson; Louise Moody Journal: J Particip Med Date: 2022-07-27