Dr Jennifer Heath1, Dr Heidi Williamson1, Dr Lisa Williams2, Prof Diana Harcourt1
1University of the West of England (UWE Bristol), Bristol, United Kingdom, 2Chelsea and Westminster Hospital Burns Service, London, United Kingdom
Dr Lisa Williams from Chelsea and Westminster Hospital.
British Burn Association Burn Care Standards (2018) recommend that peer-support and websites should be available for patients and families. These can be important in addressing the impact of children’s burn-injuries on the wider family. Research preceding the development of SupportingChildrenWithBurns.com identified barriers perceived by parents/carers that can hinder access to professionally-led face-to-face support, and the potential value of peer and online support was recognised.
Following mixed-method research, a prototype website was developed and tested with parents, professionals, and members of support organisations using concurrent think aloud methodology. Participants also completed the eHealth Impact Questionnaire (eHIQ) and questions regarding user satisfaction. Following the public release of SupportingChildrenWithBurns.com, these measures continued to be used to gather feedback.
Nine parents and 22 professionals provided feedback on the prototype website. Content analysis of qualitative feedback formed seven topic areas (need, structure/navigation, trust/relevance, language/comprehension, therapeutic content, mode of delivery, & suggested improvements), which informed the website’s development and name. For each domain of the eHIQ, parents rated the prototype website more highly than professionals did. All participants reported that they would recommend the website to others. Within the first 4 months, SupportingChildrenWithBurns.com was visited 965 times by 762 users from 21 countries, with Australia ranking third. It received positive feedback and this data continues to be collected.
Practical and psychological barriers can prevent parents from accessing psychosocial support, contributing to feelings of isolation. An online resource allows staff to signpost parents to information/support, which can be accessed when they feel ready. This could help to normalise parents’ experience of their child’s
Jennifer Heath, a Clinical Psychologist with experience working within UK burns services, conducted her PhD Research at the Centre for Appearance Research (UWE Bristol). Her desire to become more involved in applied research and interest in peer support led to a PhD that explored the experiences and support needs of parents of burn-injured children and, ultimately, the development of an online peer-informed support resource for parents. In 2017, Jennifer received two awards from the British Burn Association; the Laing Essay Prize for her paper considering new technologies in burn care from a clinical psychologist’s perspective, and an oral presentation prize for her presentation of novel ideas in the development of support for parents. Her PhD supervisors are Prof Diana Harcourt and Dr Heidi Williamson from the University of the West of England, and Dr Lisa Williams from Chelsea and Westminster Hospital.