A qualitative study on the challenges associated with accepting familial support from the perspective of transition-age youth with eating disorders.

The aim of this study was to identify types of family support desired by young adults with eating disorders during the transfer of care from paediatric to adult eating disorders programs. Using constant comparative analysis, two salient themes from qualitative interviews with 15 young adults were identified: (a) uncertainty about the role of parents in maintaining recovery during the transfer; and (b) the need for parental support, defined as assistance with eating and maintenance of recovery. Young adults voiced that parental emotional involvement and assistance with navigating adult care services is critical to their successful transfer between the two systems of care.

A qualitative study on the experiences of young adults with eating disorders transferring from pediatric to adult care.

The study's objective was to identify systemic facilitators and barriers of transferring young adults (ages 17-21) with eating disorders from pediatric to adult health and mental health services. Qualitative interviews were conducted and three themes emerged: (a) difficulties navigating care during the transfer period; (b) challenges achieving and maintaining recovery due to systemic barriers after the transfer of care;and (c) recommendations for facilitating the transfer between systems of care. From the perspective of young adults with eating disorders our study shows that the transition to adult care services may be improved with increased coordination, communication, and collaborative partnerships between pediatric and adult providers.

Development of a smartphone app for adolescents with lupus: a collaborative meeting-based methodology inclusive of a wide range of stakeholders.

Traditional challenges of creating a medical app include hearing the voices of various stakeholders as a collective rather than in a consultative process that is sequential. This report describes the development of a mobile (smartphone) app for adolescents with lupus as well as the process that was used to overcome the challenge described above. The development of the smartphone app addressed optimal ways to incorporate information about 1) lupus, including the effects of both the disease and the medications used to treat it; 2) how life choices can affect lupus patients' condition; and 3) ways to increase self-management and communication. The collaborative concept-generating and requirements-gathering methodology was used during a two-day workshop with a range of stakeholders (ages 16 - 59 years) that focused on leveraging user-centered design methods to generate guidance to mobile app developers. The app development process conducted during the workshop included the following steps: 1) recruiting a goal-focused collaborative group, 2) defining app objectives, 3) evaluating potential needs of users, 4) brainstorming app features and use-case modeling, 5) reviewing existing app features and prototypes, 6) refining functionalities, 7) writing user narratives, 8) visualizing navigation and feature design, and 9) identifying content. The use of creative devices such as drawing interfaces fostered fun, engagement, and sustained energy, and the use of a brainstorming technique leveraged methods that ensured an inclusive process so that even participants who were shy, quiet, or easily intimidated by "professionals" felt confident to contribute. In addition to a name change for the app, project outcomes included the selection of the following app features: symptom tracking; appointment and medication reminders; a social media component; a medical summary; easy navigation; informational content; gamification; and personalization (options for customization).

Honoring the Voice of the Client in Clinical Social Work Practice: Negotiating with Epistemic Injustice.

Epistemic injustice occurs when therapists implicitly and explicitly impose professional and institutional power onto clients. When clients have a diagnosis of schizophrenia, this very fact further complicates and highlights the power disparity within the helping relationship. Inspired by the work of critical philosopher Miranda Fricker on epistemic injustice, and using critical theories of language and knowledge, this article analyzes audiotaped session transcripts between a client with a history of psychosis and a social worker in an outpatient mental health agency. Findings illustrate two main discursive interactional patterns in everyday clinical social work encounters: (1) how the therapist's utterances claim disciplinary power and construct the client's testimony in alignment with an institutional agenda, while pre-empting the client's lived experience; and (2) how the client, though actively resisting, is managed to perform the identity of being a mentally ill person. The authors close with suggestions of how to avoid these mishaps and work toward epistemic justice in mental health practice.

Development of a smartphone app for adolescents with lupus: a collaborative meeting-based methodology inclusive of a wide range of stakeholders / Desarrollo de una aplicación para teléfonos móviles inteligentes dirigida a los adolescentes con lupus: un método colaborativo basado en reuniones con una amplia gama de interesados directos

Traditional challenges of creating a medical app include hearing the voices of various stakeholders as a collective rather than in a consultative process that is sequential. This report describes the development of a mobile (smartphone) app for adolescents with lupus as well as the process that was used to overcome the challenge described above. The development of the smartphone app addressed optimal ways to incorporate information about 1) lupus, including the effects of both the disease and the medications used to treat it; 2) how life choices can affect lupus patients' condition; and 3) ways to increase self-management and communication. The collaborative concept-generating and requirements-gathering methodology was used during a two-day workshop with a range of stakeholders (ages 16 - 59 years) that focused on leveraging user-centered design methods to generate guidance to mobile app developers. The app development process conducted during the workshop included the following steps: 1) recruiting a goal-focused collaborative group, 2) defining app objectives, 3) evaluating potential needs of users, 4) brainstorming app features and use-case modeling, 5) reviewing existing app features and prototypes, 6) refining functionalities, 7) writing user narratives, 8) visualizing navigation and feature design, and 9) identifying content. The use of creative devices such as drawing interfaces fostered fun, engagement, and sustained energy, and the use of a brainstorming technique leveraged methods that ensured an inclusive process so that even participants who were shy, quiet, or easily intimidated by "professionals" felt confident to contribute. In addition to a name change for the app, project outcomes included the selection of the following app features: symptom tracking; appointment and medication reminders; a social media component; a medical summary; easy navigation; informational content; gamification; and personalization (options for customization).

Uno de los desafíos tradicionales durante el desarrollo de una aplicación médica es considerar las opiniones de los diversos interesados directos como colectivo, en lugar de emplear un proceso de consulta de tipo secuencial. En este informe se describe el desarrollo de una aplicación para teléfonos móviles inteligentes dirigida a adolescentes con lupus, así como el procedimiento empleado para superar este tipo de dificultades. En el desarrollo de esta aplicación se buscó la mejor manera de incorporar información acerca de: 1) el lupus, incluidos los efectos tanto de la enfermedad como de los medicamentos utilizados para su tratamiento; 2) cómo las opciones de vida pueden afectar a la situación de los pacientes con lupus; y 3) los procedimientos para aumentar el autotratamiento y la comunicación. En un taller de dos días, en el que participaron diversos interesados directos (de 16 a 59 años de edad), se empleó una metodología colaborativa de generación de conceptos y recopilación de requisitos con el propósito de aprovechar los métodos de diseño centrados en el usuario para que sirvan de guía a los productores de aplicaciones para telefonía móvil. El proceso de desarrollo de la aplicación que se llevó a cabo durante el taller utilizó los siguientes pasos: 1) captar un grupo colaborativo centrado en las metas, 2) definir los objetivos de la aplicación, 3) evaluar las posibles necesidades de los usuarios, 4) hacer una lluvia de ideas sobre las características de la aplicación y elaborar modelos de casos de uso, 5) analizar las características y los prototipos de las aplicaciones existentes, 6) perfeccionar las funcionalidades, 7) redactar distintas experiencias de los usuarios, 8) visualizar el diseño de la navegación y las funcionalidades, y 9) determinar el contenido. El uso de recursos creativos como las interfaces para dibujar fomentó la diversión, la participación y la energía sostenida; y el empleo de una técnica de lluvia de ideas permitió aprovechar algunos métodos que garantizaban un proceso inclusivo, de manera que aun los participantes tímidos, callados o fácilmente intimidables por los "profesionales" se sintieran cómodos para participar. Además del cambio de nombre de la aplicación, otro resultado del proyecto fue que se seleccionaron las siguientes características de la aplicación: seguimiento de síntomas; recordatorio de citas y medicación; un componente de redes sociales; un resumen del historial médico; navegación sencilla; contenido informativo; ludificación; y personalización (opciones de adaptación individualizada).