Access to Pediatric Rheumatology Centers for JIA Patients: Factors Associated With Time to Access Pediatric Rheumatology Centers

University Hospital, Clermont-Ferrand45 enrolled

Overview

JIA patients, their parents, and the health care professionals experience the complexity of the initial care pathway. The aim of the study is to explore the referral pathway to access pediatric rheumatology centers for JIA patients. The exploration will aim to identify the barriers and facilitators of referral, based on the conceptual framework of the health literacy. The investigators will conduct a qualitative study using semi-structured interviews. The perspectives of parents/children/health care professionals will be crossed to enrich the data.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Juvenile Idiopathic Arthritis

Interventions

semi-structured interviewOTHER

Subjects will be recruited in a purposive, non-randomized manner. Data will be collected to obtain a sufficient diversity of perspectives on the topic, while maintaining sufficient homogeneity for analysis. The number of participants cannot be determined in advance; it will be determined after data saturation.

Medical Language ↔ Plain English

Inclusion Criteria: Children: * age \> 11 years * JIA diagnosed between 4 and 24 months prior to the start of the study Parents: \- parent of a child with JIA diagnosed between 4 and 24 months prior to the start of the study Health care professional: * Physician with experience in the initial management of children with JIA (between symptom onset and first visit with a pediatric rheumatologist). Exclusion Criteria: For all participants: * Refusal to participate in interviews * Presenting a health condition incompatible with an interview * Participants with inadequate French to take part in semi-structured interviews

Locations (4)

CHU de Clermont-Ferrand

Clermont-Ferrand, France

RECRUITING

Hospices Civils de Lyon

Lyon, France

NOT_YET_RECRUITING

APHP

Paris, France

NOT_YET_RECRUITING

Hopital Nord Franche-Comté

Trévenans, France

RECRUITING

Outcomes

Primary Outcomes

Experience and views of barriers and solutions to the referral to pediatric rheumatology center for JIA patients

Through semi-structured interviews, the study will reconstruct the referral pathway to the pediatric rheumatology center for JIA patients. * For patients and their parents, the interviews will focus on their experiences of the health care system, their feelings about interactions with health professional, their expectations and the elements that led to the parents' decision regarding their child's health. * For health care professionals, the interviews will focus on their experience in managing children with JIA (from the symptom onset to the first visit with the pediatric rheumatologist), the difficulties they encountered, and the improvements to be made in training and communication.

Time frame: About 1 hour