Elsevier

Burns

Volume 45, Issue 8, December 2019, Pages 1848-1855
Burns

A Road Less Travelled: using Experience Based Co-Design to map children’s and families’ emotional journey following burn injury and identify service improvements

https://doi.org/10.1016/j.burns.2019.07.024Get rights and content

Highlights

  • Emotional rollercoaster plus 4 other key themes identified following burn injury.

  • Improvements highlighted as dressing changes and managing expectations.

  • Families felt empowered to shape the future of burn care.

  • Successful health professional and families collaboration.

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.

Section snippets

Experience Based Co-Design (EBCD)

EBCD is an established method for identifying areas for improvements in NHS services [15]. It was developed by the NHS Institute for Innovation and Improvement, Patient-Centred Care Project as a means for patients and practitioners to work together to enhance the patient experience and co-design service improvements. It has been widely used in diverse NHS settings and the Kings Fund (KF) developed and until recently hosted an online toolkit to aid its wider use as a service improvement

Results

Whilst each child’s burn injury and family had a unique cause and course, there were many unexpected similarities which arose in their accounts and in the factors or experiences which affected these families most. Five overarching stages in the emotional journey following burn injury emerged: (1) life overturned; (2) dawning reality; (3) riding the emotional roller coaster; (4) aftershocks; (5) adapting to a new normal.

Discussion

The aim of this study was to comprehensively explore and map families’ emotional journeys after a child’s burn injury, and use this insight to identify service improvements and develop an educational tool. Three parent semi-structured interviews were conducted and videoed. The separate videos were thematically analysed, merged together and edited to produce a short film illustrating their experiences. Four burn care staff were interviewed separately and the findings from these were shown as

Dissemination

Although each families/child’s experience is unique, our study revealed universal challenges which all participants felt it was useful to share. The film produced from parent interviews has been shown at several events, including a national Burns Conference and two local research events at the NHS Trust and University with positive feedback from burn professionals regarding the use of the film as an educational tool.

“Very powerful. Will be great resource for clinical staff and also parents to

Conclusion

The use of EBCD to conduct this study was new and stimulating for the team; it provided a framework for collaboration between service providers and users and was extremely effective in identifying and prioritising service improvements. Telling the patient story provides rich and powerful service feedback at many levels; it keeps the patients and their families at the centre and heart of care delivery and has led to the identification of key implementable improvements. By telling the whole

Acknowledgements

We would like to thank all those who took part in the is project, including practitioners, filming support at both UWE and UHB and Roald Dahl Marvellous Children’s Charity for allowing us the opportunity, but most importantly the families who gave their time to participate in the is study.

The work was funded by The Marvellous Nurse Inventing Room, Roald Dahl Marvellous Children’s Charity.

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