Stimulating Patient Engagement in Medical Device Development in Kidney Disease: A Report of a Kidney Health Initiative Workshop.

New technologies challenge current dialysis treatment paradigms as devices become smaller, more portable, and increasingly used outside the dialysis clinic. It is unclear how patients will view this care transition, and it will be important to consider patient and care partner perspectives during all aspects of development for novel dialysis therapies, from design and clinical trials to regulatory approval. To gain insight into this area, the Kidney Health Initiative, a public-private partnership between the American Society of Nephrology, the US Food and Drug Administration, and nearly 80 member organizations and companies dedicated to enhancing patient safety and fostering innovation in kidney disease, convened a workshop of patients, care partners, and other kidney community stakeholders. The workshop included background presentations followed by focused small group discussions in 3 areas (device design, clinical trials, and regulatory approval). Participants explored how to involve patients throughout the life cycle of a medical device, including discussions of how patients can influence device design, assist in the planning and implementation of clinical trials, and provide input to affect regulatory decisions. Patients were engaged in the workshop discussion and interested in sharing their perspectives, but they recommended additional efforts around education, communication, and outreach in these areas.

Standards of practice for the adult mental health workforce: meeting the needs of families where a parent has a mental illness.

This article outlines the development of practice standards for the adult mental health workforce for addressing the needs of families where a parent has a mental illness (FaPMI). The practice standards recommended here were formulated using a modified cooperative inquiry process with a group of senior clinical leaders in adult mental health services in Australia, following consultation with the available literature and policy documents. The aim of the project was to generate, align, and operationalize family-inclusive practice standards within the core activities of the adult mental health workforce and integrate into the continuum of care and recovery for service users who are parents of dependent children. As part of a modified Delphi method, the standards were also ranked by the senior clinical leaders to determine what they believe to be essential and recommended practices for the adult mental health workforce they manage. We argue that developing practice standards that provide practical and realistic expectations of the adult mental health service workforce enable services and workers to better adapt practice to respond to FaPMI.

[Taking care of outreach workers who intervene with marginal youths : Part 2]. / Des rencontres de proximité : le prendre soin de soi des intervenants au coeur de l'intervention solidaire pour joindre les jeunes en marge : Deuxième partie.

Outreach work with youths in a precarious situation raises emotions and questions in workers while confronting them with their own suffering and fragility. In order to help them help as well as counter the risk of vicarious traumatisation, spaces for talking and exchanging with a third party have been created in various intervention settings. The objective is to allow them to elaborate on what their work makes them feel and thus preserve their stability and their ability to think. Through group or individual clinical discussions, these exchanges favor distancing and allow new perspectives on their work. That is why peer support appeared as an essential element for psychologists and therapists who support not only youths but the workers who help them. The setting up of our outreach meetings-a result of our observation, allows keeping the flame alive without risking being burned. In this article, the issue of marginality in professionals working with homeless youths-as well as our own-is raised. It sometimes translates in the absence of a fixed location for a meeting symbolizing traditional stability, sometimes in the necessary flexibility of a framework to reach this population, sometimes in the openness to otherness and more precisely to a difference that disturbs when anxiety that this disaffiliated being raises, could well be our very self! Is it really marginality or a particular positioning aiming at constructive denunciation of stigmatization, unjust exclusion that youths with mental health and addiction problems sustain that place them at risk of homelessness? Neither missionaries, nor saviors are needed, but only hopeful facilitators working alongside people who want to stand up and take their place in society.

[Close team work: sharing knowledge, solidarity and hope]. / Des rencontres de proximité: apprendre de l'autre, pour tisser de la solidarité et de l'espoir. Première partie.

A proximity team was created more than eight years ago by a group of health professionals working with disaffiliated and homeless youth in the most precarious of situations. Proximity meetings have continued since that time, despite many changes within the team, including departures and new arrivals. The proximity team is a partnership project which revolves around common values and principles aimed at improving services for youth who find themselves marginalized or at risk of exclusion. Health professionals from various backgrounds explain why they believe in this approach to proximity work.