‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study

Rapley, Tim, May, Carl R., Smith, Nicola and Foster, Helen E. (2021) ‘Snakes & Ladders’: factors influencing access to appropriate care for children and young people with suspected juvenile idiopathic arthritis – a qualitative study. Pediatric Rheumatology, 19 (1). p. 43. ISSN 1546-0096

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Official URL: https://doi.org/10.1186/s12969-021-00531-3


Background: Many children and young people with Juvenile Idiopathic Arthritis (JIA) experience delay in diagnosis and access to right care. The reasons for delay are multi-factorial and influenced by patient and family, clinician and organisational factors. Our aim was to explore the experiences of care, from initial symptoms to initial referral to paediatric rheumatology.
Methods: We analysed one-to-one and joint qualitative interviews with families of children with JIA (n=36) presenting to a regional paediatric rheumatology service in the UK. We interviewed 51 family members (including mothers, fathers, patients, grandmothers and an aunt) and 10 health professionals (including orthopaedic surgeons, paediatricians, paediatric immunologist, General Practitioner and nurse) and a teacher involved in the care pathway of these JIA patients. Interviews were audio-recorded and analysed according to the standard procedures of rigorous qualitative analysis - coding, constant comparison, memoing and deviant case analysis.
Results: The median age of the children was 6 years old (range 1-17), with a spread of JIA subtypes. The median reported time to first PRh MDT visit from symptom onset was 22 weeks (range 4-364 weeks). Three key factors emerged in the pathways to appropriate care: i) the persistence of symptoms (e.g ‘change’ such as limp or avoidance of previously enjoyed activities); ii) the persistence of parents help-seeking actions (e.g repeat visits to primary and hospital care with concern that their child is not ‘normal’; iii) the experience and skills of health professionals resulting in different trajectories (e.g no-real-concern-at-this-point or further-investigation-is-required). JIA was more likely to be considered amongst health practitioner if they had prior experiences of a child with JIA (moreso with a ‘protracted pathway’) or exposure to paediatric rheumatology in their training. Conversely JIA was more likely to be overlooked if the child had comorbidity such as learning disability or a chronic illness.
Conclusions: Care pathways are often ‘turbulent’ prior to a diagnosis of JIA with physical and emotional distress for families. There is need for greater awareness about JIA amongst health care professionals and observations of change (from family and non-health care professionals such as teachers) are key to trigger referral for paediatric rheumatology opinion.

Item Type: Article
Additional Information: Funding information: This article presents independent research funded by Arthritis Research UK (17738).
Uncontrolled Keywords: Access to care, delayed diagnosis, juvenile idiopathic arthritis, help-seeking behaviour, outcome; primary care, pathways of care
Subjects: B900 Others in Subjects allied to Medicine
L400 Social Policy
L500 Social Work
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: John Coen
Date Deposited: 04 Jan 2021 15:00
Last Modified: 31 Jul 2021 15:32
URI: http://nrl.northumbria.ac.uk/id/eprint/45081

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