PaEdiatric Rheumatology FramEworK for Technology enabled care: A mixed methods study to investigate current practices, experiences and perspectives. (PERFEKT)

Research summary

Children and young people (CYP) with problems with sore joints called Juvenile idiopathic Arthritis (JIA) or problems with their immune system (rheumatological issues) have a range of complaints, such as painful, stiff joints. These problems come and go and can stop CYP attending school. In adulthood, symptoms may affect what job they are able to do. CYP often need to take medications with severe side effects. CYP are usually watched closely to ensure that their medications are working and side effects are not too severe. CYP’s rheumatology teams therefore need to talk regularly with families. Historically, CYP and their parents regularly attended outpatient departments, sometimes travelling long distances, and taking time off school and work. However, Technology Enabled Care (TEC) may be able to support some families just as well when they are cared for from home. This study is important because the use of TEC was rushed into practice during Covid-19 with few studies to provide guidance. Lack of thorough research has resulted in varying practices across the UK. The study aim is to investigate current practices, experiences, and views related to TEC adoption within CYP’s rheumatology UK services. The study design will adopt a few approaches: an online survey to find out which healthcare technologies are being used, where, and how. Participants will be asked if they would like to take part in an interview or focus group to understand how their views on how TEC can be used to support and improve their care. All results will be brought together to fully address the aim. Participants will complete an online survey then asked to provide contact details if they would like to take part in an interview or focus group. The study is funded by the NIHR (Doctoral Fellowship 302999) and will be recruiting patients, parents, and staff across CYP's UK rheumatology departments.

Principal Investigator

Ruth Finch

Contact us

Email: emergency.research@oxnet.nhs.uk

IRAS number

330883