The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.

BACKGROUND: Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called "Teens Taking Charge: Managing OI Online," hereafter named "Teens OI." This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. OBJECTIVE: The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. METHODS: A user-centered design is presently in progress to design and develop Teens OI. A "Website Design and Development Council" (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. RESULTS: As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. CONCLUSIONS: The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths' openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47524.

Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.

Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.

The moral experiences of pediatric nurses in Brazil: Engagement and relationships.

BACKGROUND: Pediatric nursing care involves many significant ethical challenges. Although nurses are broadly recognized as professionals with relevant knowledge about children and families, little is known about how nurses experience ethical concerns in their everyday practice. OBJECTIVE: The objective of this study was to better understand the moral experiences and related moral distress experiences of nurses working in pediatric settings in Brazil. DESIGN: Interpretative phenomenological study conducted through narrative interviews. PARTICIPANTS AND RESEARCH CONTEXT: Nine nurses working in three pediatric settings of a teaching hospital in a city of Southern Brazil. ETHICAL CONSIDERATIONS: The study was approved by the Research Ethics Committee of the research site, and research ethics principles were respected throughout the study. FINDINGS: This investigation illuminated a broader dimension of nurses' moral distress, which was recognized as moral experience. In advancing our understanding of nurses' moral experiences, engagement was identified as a central phenomenon that is present in the understandings and actions of nurses within their relationships in their daily practice and lived experiences. Three themes were described with regard to nurses' relationships and their moral experiences: (a) relationship with the healthcare team; (b) relationship with the family; and (c) relationship with the child. DISCUSSION: The findings of this study are congruent with emerging health literature that demonstrated the focus on moral distress as limiting for bioethical inquiry. Moreover, it is important to better understand and recognize nurses' relational environment and engagements to advance understandings of the ethical dimensions of pediatric nursing practice. CONCLUSION: This study provides a better understanding on how engagement affects moral experiences, demonstrating how nurses can experience distress but also satisfaction, gratification, rewarding feelings, and a sense of responsibility for the care they provide.

Trajetória de familiares cuidadores de crianças ao pronto atendimento / Trajectory of relative caregivers of children to emergency unit / Camino de familiares cuidadores de niños hasta un servicio de urgencia

Trata-se de uma pesquisa qualitativa bicêntrica que objetivou descrever a trajetória de familiares de crianças menores de cinco anos atendidas em pronto-atendimento infantil. Os sujeitos desta pesquisa foram os familiares cuidadores das crianças atendidas em dois pronto-atendimentos (PA) no ano de 2010 em dois municípios do sul do Brasil. Os resultados apontaram três categorias: a busca pelo pronto-atendimento como a primeira escolha; as dificuldades de acesso ao atendimento em unidades básicas de saúde; as facilidades e dificuldades para o atendimento a essas crianças no pronto atendimento. Concluiu-se que a dificuldade de acesso aos serviços de atenção primária faz com que os familiares optem pelo PA como primeira escolha. Também, que a trajetória destes familiares não segue a lógica preconizada pelas políticas públicas em que a porta de entrada deveria ser na atenção primária. Recomenda-se a formulação de estratégias para reorganização dos serviços de atenção primária, viabilizando o acesso e a qualificação da atenção à saúde da criança.

This is a double centric qualitative research that aimed to describe the trajectory of relative caregivers of children younger than five years of age treated in emergency care for children. The subjects of this research were relative caregivers of children seen in two emergency units in 2010 in two municipalities in the south of Brazil. As technique for data collection it was conducted semi-structured interviews with 10 caregivers in domiciliary visits. The results showed three categories: the search for emergency care as the first choice, the difficulties of access to care in primary health care units, advantages and difficulties for the care of these children in the emergency department. It was concluded that the difficulty of access to primary care services makes the family to opt for emergency units as first choice.

Se trata de una investigación cualitativa becéntrica, que objetivó describir la trayectoria de los familiares de niños menores de cinco años, atendidos en un servicio de urgencia pediátrica. Los sujetos fueron los familiares cuidadores de niños atendidos en dos servicios de urgencias, en el año 2010, en dos municipios del sur de de Brasil. Para la recolecta de datos se utilizó la entrevista semiestructurada con 10 familiares cuidadores durante las visitas domiciliarias. Los resultados permitieron establecer tres categorías: la búsqueda por la atención de emergencia como primera opción; las dificultades de acceso a los servicios de atención primaria de la salud; facilidades y dificultades para la atención a esos niños en los servicios de urgencias. Se concluye que, la dificultad de acceso a los servicios de atención primaria, hace con que los familiares opten por los servicios de urgencias como primera opción. Se recomienda la reorganización de estrategias de los servicios de atención primaria, viabilizando el acceso y la cualificación de la atención de la salud para el niño.