Becoming experts in their own treatment: How children and caregivers engage with non-invasive burn scar treatments

Jessica Killey¹, Megan Simons^1,2, Sarah Prescott³, Roy Kimble¹, Zephanie Tyack^1,4,
¹Centre for Children’s Burns and Trauma Research, The University Of Queensland, South Brisbane, QLD, Australia
²Occupational Therapy Department, Queensland Children’s Hospital, Children’s Health Queensland Hospital and Health Service, South Brisbane, Queensland, Australia
³School of Health and Rehabilitation Sciences, The University of Queensland , Brisbane, Queensland, Australia
⁴Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health and Social Work, Queensland University of Technology, Kelvin Grove, Queensland, Australia

Abstract

Background: Children with, or at risk of developing, hypertrophic scarring following a burn injury may be required to use non-invasive burn scar treatments (e.g., pressure garments, silicone gels, exercises, moisturisers and splints) for many months or even years. While these non-invasive scar treatments can pose challenges for children and their caregivers, previous research from the perspective of children themselves is limited. Therefore, the aim of this study was to develop a grounded theory of how children and their caregivers engage with non-invasive burn scar treatments.

Methods: Using a constructivist grounded theory approach, a total of 27 interviews were conducted, involving children 8 years and older (n = 7) and caregivers of children all ages (n = 20). Interviews were transcribed verbatim and coded line-by-line. As per theoretical sampling, simultaneous data collection and analysis was carried out. Initial codes were refined to develop focussed codes and theoretical categories. Data collection and analysis continued until theoretical saturation was achieved.

Results: A theory of children and their caregivers becoming experts in the use of non-invasive burn scar treatments was established. Theoretical categories included ‘making it work’, ‘finding the balance’ and ‘seeking reassurance’ and highlighted children and caregivers’ flexibility and persistence with scar treatments. By developing their own individual strategies for engaging with scar treatments, children and caregivers further developed their expertise over time.

Discussion: These results may inform the development of future interventions to support children and caregivers and guide recommendations for health professionals providing non-invasive scar treatments to children with burns.

Biography

Jessica Killey is an occupational therapist with experience working with adults with burn injuries during the acute hospital and rehabilitation phases. She has recently submitted her PhD which utilised grounded theory methodology to explore how children with burns, and their caregivers, engage with non-invasive burn scar treatments and to better understand how health professionals can support children and families’ engagement with these treatments.