Exploring parents’ attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study

Abstract

Background Burn injuries affect more than 60,000 children every year in the UK, with many experiencing scarring as a result. Scarring can be highly variable, and research is required to explore the factors that may influence variability, as well as the psychosocial impact of these injuries on children and their caregivers. A multicentre burns cohort study is being planned to investigate genetic determinants of scarring and long-term psychosocial outcomes. Public involvement (PI) is an essential element of the design and feasibility stages of this planning. As part of this work, this study aimed to gain an in-depth understanding of parents’ attitudes towards participation in burns research, specifically a longitudinal cohort study of children with small burns (<10% total body surface area [TBSA]). Methods In total, 16 parents of children with burns took part in semi-structured interviews regarding their experiences of taking part in research and their attitudes towards the potential future cohort study. Interviews were audio-recorded, transcribed verbatim and analysed using Reflexive Thematic Analysis. Results Four themes were identified: ‘Acknowledging trauma’; ‘Aligning research with experience’; ‘Research as a reciprocal relationship’; and ‘Contributing to change’. Discussion These four themes represent factors that parents suggested were important for acceptability, relevance, recruitment and retention of participants into a longitudinal multicentre cohort study of children with a burn injury and their caregivers. Conclusion The findings of this study will be incorporated into the design of such a study, as well as having wide reaching relevance for research in the field of paediatric burn injuries. Lay Summary Background to this subject More than 60,000 children experience a burn injury every year in the UK and many of these injuries lead to scarring. We know that the extent of this scarring can vary, and we know that some children and their parents/caregivers manage well but others struggle with the challenges they face after having a burn. Researchers would like to carry out research on these topics, including asking participants to take part in research over several years to find out how genetics might influence scarring, as well as their psychological experiences over this time. Before they conduct this study, it is very important that researchers understand parents' attitudes towards this kind of research. The current study aimed to find out parents' opinions and ask what issues were important to them when taking part in burns research. Details of how the work was conducted Parents of children who had experienced a scald (a type of burn injury) were asked to take part in a research interview. In total, 16 parents took part in this study. We recorded these interviews and analysed them, looking for patterns and shared experiences in participants' interviews. What we did and did not learn from this study We found four themes in the interview data: ‘Acknowledging trauma', ‘Aligning research with experience', ‘Research as a reciprocal relationship', and ‘Contributing to change'. Overall, these themes suggest that parents were mostly supportive of a ‘burns cohort study’, but they have also highlighted some important considerations for this research and other future burns research studies.