A qualitative study exploring experiences of treatment in paediatric rheumatology - children’s, young people’s, parents’ and carers’ perspectives
Authors' conclusion
Collectively, findings demonstrate experiences of medical treatment reflect the nature of many paediatric rheumatology conditions, oscillating between periods of positive and negative trajectories.
Study context
- Population
- Children and young people (CYP) and their PC recruited at a day-case unit for IV infusions at a tertiary paediatric rheumatology centreinterviews mean 41 min 43 s
- Participants
- 32 participants
- Comparison
- CYP vs PC
- CYPn = 15
- PCn = 17
- Outcome
- Treatment experiences of CYP and PC in a paediatric rheumatology service
Methodological detailsjoint semi-structured interviews, thematic analysis, single tertiary centre, Data transcribed, quality checked and thematically analysed using NVivo 12.4
- Joint semi-structured interviews
- Thematic analysis
- Single tertiary centre
- Data transcribed, quality checked and thematically analysed using NVivo 12.4
Main finding
As reported in the abstract
Treatment experiences
- Experiences described using infliximab, followed by tocilizumab and abatacept
- Participants experienced a wave, oscillating between positive and negative trajectories
- Experiences of medical treatments described as temporary, eventually changing and leading to treatment changes or cessation
- Behaviours influenced by somatic factors (pain, function)
- Behaviours influenced by social factors (advice from health professionals, encouragement from friends, family and teachers, practicality of treatment re school, work and finance)
- Behaviours influenced by cognitive factors (fear of needles, fear of specific medications, beliefs about necessity)
Original publication
A qualitative study exploring experiences of treatment in paediatric rheumatology - children’s, young people’s, parents’ and carers’ perspectives. Pediatr Rheumatol Online J. Published 23 January 2025. doi:10.
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