Abstract
Background
There is limited literature in paediatric rheumatology describing holistic lived experiences of children and young people (CYP) and their parents or carers (PC).Improving our understanding in this area is important as they could have implications including treatment adherence. This study aimed to explore treatment experiences of CYP and PC in a paediatric rheumatology service.
Methods
Participants attending day-case ward for various intravenous infusions at a tertiary paediatric rheumatology centre were recruited. Qualitative semi-structured interviews with CYP and PC, were used to collect data. Data were transcribed, quality checked and thematically analysed using NVivo 12.4 to identify findings.
Results
Thirty-two participants (15 CYP between the ages of 6 and 16 years, 17 PC).) took part in interviews lasting 41 minutes and 43 seconds on average. Participants most commonly described experiences using infliximab, followed by tocilizumab and abatacept. Participants described their disease as a wave, oscillating between symptoms and treatment. Experiences of treatments were temporary, which eventually and inevitably failed. Treatment adherence behaviours were influenced through somatic factors (pain, function) and social factors (advice from health professionals, encouragement from friends, family and teachers, practicality of using treatment in relation to school, work and finance) and cognitive factors (fear of needles and fear of specific medication).
Conclusions
Collectively, findings demonstrate experiences of treatment reflect the nature of many paediatric rheumatology conditions oscillating between periods of time when their condition is well-managed, and they are symptom-free and treatment-failure with symptom return. A limitation of the study is interviews were conducted jointly with patients and carers, which may have influenced what participants were willing to say in front of one another. Further work should seek to identify somatic, social and cognitive targets for interventions to improve experiences of treatment in everyday life.