RESUMO
BACKGROUND: Systemic juvenile idiopathic arthritis (sJIA) is a diagnosis of exclusion. The complex nature and clinical variety of the disease, as well as the vast clinical variation of disease presentation, may lead to difficulties in disease detection and subsequent delays in treatment. AIM: To provide a consensus guidance on the management of newly diagnosed sJIA patients among pediatric rheumatologists in Arab countries. METHODS: This work was conducted in two phases. The first phase utilized an electronic survey sent through an email invitation to all pediatric rheumatologists in Arab countries. In the second phase, a Task Force of ten expert pediatric rheumatologists from Arab countries met through a series of virtual meetings. Results obtained in phase one were prioritized using a nominal group and Delphi-like techniques in phase two. RESULTS: Seven overarching principles and a set of recommendations were approved by the Task Force to form the final consensus. CONCLUSION: This is the first consensus on a clinical approach for pediatric rheumatic diseases among Arab pediatric rheumatologists. It is presented as a guidance on the clinical approach to sJIA that requires further evidence, and future updates are anticipated.
RESUMO
BACKGROUND: Suicide is the leading cause of avoidable death in prisons worldwide and suicide prevention is an international priority. Consequently, there is an urgent need to develop evidence-based treatments. We conducted a randomized controlled trial of a novel suicide prevention psychological therapy for male prisoners. To promote ecological validity by addressing the "real-world" situation of suicidal prisoners, we involved a consultant group of ex-offenders with past experience of being suicidal during imprisonment. Service user involvement in prison research is challenging and underdeveloped. OBJECTIVE: We aimed to investigate the ex-offender service user consultants' experiences of being involved in the research. DESIGN: Individual qualitative interviews were conducted and analysed using an Interpretative Phenomenology Analysis (IPA) framework. SETTING/PARTICIPANTS: The study was conducted at a university in North England, UK, comprising four ex-offenders with experience of being suicidal during past imprisonments. RESULTS: Two superordinate themes were identified: "Working Together" depicted participants' perceptions of the pivotal role of good relationships with researchers, and "Journey of Change" outlined how participants' involvement in the research impacted on their personal lives. DISCUSSION: Little is known about how to successfully involve ex-offender service users in research. Our results indicate the conditions necessary for successfully engaging ex-offender service users in research and have important implications for improving the quality of prison research. CONCLUSIONS: Involving forensic service users in research is feasible and should be encouraged, as despite certain challenges, it is highly rewarding both for the research and the ex-offender service users.
