Juvenile Idiopathic Arthritis
Conditions
Keywords
qualitative research, access to care, time to referral, health literacy
Brief summary
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.
Interventions
OTHERsemi-structured interview
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.
Sponsors
Research on Healthcare Performance Lab U1290
University Hospital, Clermont-Ferrand
Study design
Observational model
OTHER
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
11 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Experience and views of barriers and solutions to the referral to pediatric rheumatology center for JIA patients | About 1 hour | 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. |
Countries
France
Contacts
Primary ContactLise LACLAUTRE
Outcome results
None listed