Abstract Background/Aims Living with a paediatric rheumatological condition impacts upon the whole family. The aim of the IMPACT study was to design, develop and test a chatbot intervention to support parents and carers of children and young people with a paediatric rheumatological condition and their families. We wanted to understand barriers and facilitators to good care for all paediatric rheumatological diseases, but also focus on challenges to identify opportunities to create an intervention to provide further support for families in between appointments. Methods As part of the first phase of this study, we invited parents/carers and healthcare professionals to share with us their experiences in focus groups. Focus groups were offered virtually or face-to-face, depending on preferences. Parents/carers and healthcare professionals (HCPs) participated in separate focus groups. Thematic analysis was used to analyse the data. Results We held 20 focus groups to understand what additional support families would benefit from. A total of 66 parents and carers who were caring for children with a range of rheumatological conditions (50% JIA, 19.4% JDM, 4.8% SLE, 25.8%, other rarer conditions) participated, as did 83 HCPs with an average of 8 years of practice in paediatric rheumatology (ranging from HCPs who were beginning their career to 34 years of experience) from wider multi-disciplinary teams. Three main themes were identified that showed a discrepancy between parents/carers and HCPs: (1) implications of knowledge and transparency - which some felt could cause more damage than good, while some advocated for honesty about the “uncertainties of nobody actually being able to say if something is going to work” as treatments can be “kind of a guessing game”; (2) access to results - where some HCPs felt that too much information may not be appropriate for families as it may raise their anxieties as they are not able to interpret blood results; and (3) the concept of trust and knowing your role - how advocating for your child when you have concerns can come across as a pushy parent which may result in perceived repercussions for your child’s care. Conclusion Understanding families’ needs and utilising healthcare professionals’ experiences to help the development process of interventions is important to make sure the intervention is appropriate to provide additional support to families. Identifying barriers and facilitators is imperative to achieve a common shared goal of finding suitable interventions to improve wellbeing of families and improve outcomes. Disclosure K.H. Kupiec: None. P.H. Livermore: None.
Kupiec et al. (Wed,) studied this question.