Objective The objective is to explore the journey to diagnosis and referral pathway from the onset of symptoms to the initial assessments at paediatric rheumatology (PR) centres, based on the experience of children with juvenile idiopathic arthritis (JIA) and their parents.

Design We conducted a qualitative study with semistructured interviews. Our qualitative and phenomenological procedure applied interpretative phenomenological analysis.

Participants 19 families of children diagnosed with JIA 4–24 months before the study began (22 parents, 12 children>11 years), across 4 PR centres.

Main outcome measures The results highlight the contrasting feelings of children and their parents on the referral pathway and interactions with primary care physicians (PCPs).

Results Four superordinate themes emerged: (1) the journey undertaken by families from initially trivialising the first symptoms to a growing sense of urgency, (2) the perception gap between the families’ growing disquiet and first medical interventions, (3) the lack of guidance from physicians prompting parents to initiate action and (4) the various elements of the care pathway that influenced the way the diagnosis was experienced and its impact.

Conclusion The psychosocial consequences of delayed diagnosis in JIA should not be underestimated, especially for adolescents. The views and experiences of children and their parents on the diagnostic journey should be implemented in training programmes and guidelines for PCPs. The development of online supports, integrating the latest medical knowledge with testimonials from families about their experiences, with a common language for physicians and the general population, can facilitate communication and empower families to navigate the healthcare system.

Trial registration number NCT05696340.Cite Now