Parental Self-Efficacy and Personal Time Help Explain Impact of Parent-Staff Interactions on Parental Distress and Bonding in the Neonatal Intensive Care Unit.

OBJECTIVES: To identify factors that help explain associations between parent-staff interactions and: (1) parental depression, anxiety, and post-traumatic stress; and (2) parent-child bonding in the neonatal intensive care unit. STUDY DESIGN: Our cross-sectional mixed methods survey investigated the ways in which parental-staff interactions relate to parental distress and parent-child bonding. Parents with babies in the neonatal intensive care unit (n = 165) completed validated measures and open-ended questions about their experiences with staff. Using a sequential explanatory approach, we examined: (1) whether and how parental self-efficacy and personal time mediated parent-staff interactions on distress and bonding; and (2) parental written accounts of experiences with staff. RESULTS: Multiple mediation analyses revealed that parent-staff interactions exhibited an: (1) indirect effect on parental depression (b = -0.05, SE = 0.02, CI [-0.10, -0.01]), anxiety (b = -0.08, SE = 0.04, CI [-0.16, -0.02]), and parent-child bonding (b = -0.26, SE = 0.08, CI [-0.43, -0.11]) through parental self-efficacy; and (2) indirect effect on parental post-traumatic stress (b = -0.08, SE = 0.04, CI [-0.17, -0.00], completely standardized indirect effect = -0.06) through parental personal time. Thematic analyses revealed that emotional and instructional support from staff helped build parental self-efficacy. Trust with staff helped parents feel comfortable leaving the bedside and engage in basic needs (eg, eat, sleep). CONCLUSIONS: Family-staff dynamics are the foundation for high quality family-centered care. Staff who empower parents to participate in care, engage in parenting tasks, and take care of themselves may reduce their distress and improve relationships among staff, parents, and babies.

Percepción de los familiares de pacientes críticos en relación a la comunicación que le brinda el profesional de enfermería de la unidad de cuidados intensivos / Perception of the relatives of critically ill patients in relation to the communication pro-vided by the nursing professional of the intensive care unit

Introducción: cuando un individuo es hospitalizado en UCI para control y monitorización permanente de su salud, su cuidado está orientado específicamente a la asistencia plena de médicos y personal de enfermería. La complejidad de estos cuidados genera una crisis situacional y emocional en la familia que causa ansiedad, estrés, miedo y duda. La forma en la que el enfermero intervenga con el familiar en situaciones críticas es lo que va a determinar la percepción de los mismos hacia el cuidado de enfermería, en tanto la comunicación y el apoyo emocional forma parte de la competencia profesional y contribuye al cuidado holístico del paciente y familia. Objetivo: Determinar la percepción de los familiares de pacientes, respecto a la comunicación que le brinda el profesional de enfermería en la unidad de cuidados críticos. Materiales y método: Se realizó un estudio de tipo cuantitativo, descriptivo y de corte transversal. La muestra estuvo constituida por 40 familiares adultos responsables del paciente hospitalizado en la unidad de terapia intensiva, durante los meses Junio - septiembre del 2023. El instrumento de recolección de información fue un cuestionario de "Percepción de los familiares de los Pacientes Críticos, respecto a la intervención de Enfermería durante su Crisis Situacional"; el mismo fue utilizado y validado por la autora Franco Canales Rosa aplicado en el Hospital Nacional Edgardo Rebagliati, Abril de 2003. Resultados:Los resultados muestran que la percepción global de los familiares, es favorable, respecto a la comunicación verbal, comunicación no verbal y el apoyo emocional[AU]

Introduction: health is the condition in which every living being enjoys absolute well-being both physically and mentally and socially, when it is affected either by a pathology or by general accidents; Given the physical condition of the individual, he or she is often hospitalized in the ICU for permanent control and monitoring. Your care is specifically oriented towards the full assistance of Doctors and Nurses. The complexity of this care generates a situational and emotional crisis in the immediate family that causes anxiety, stress, fear and doubt. The way in which the nurse supports the family member in critical or distressing situations is what will determine the perception of the family members towards the nurses, since communication and emotional support are part of the professional competence and contribute to the holistic care of the patient. patient and family. It is a care that is reflected in the feeling that the nurses have that when they do it, the families are very grateful and that, without a doubt, it is their job. Objective: Determine the perception of the patient's relatives regarding the communication provided by the nursing professional in the critical care unit of a private institution. Materials and Methods: A quantitative, descriptive and cross-sectional study was carried out. The sample was made up of 40 adult relatives responsible for the patient hospitalized in the Adult intensive care unit, during the months of June - September 2023. The information collection instrument was a questionnaire on "Perception of relatives of Critical Patients, regarding to Nursing intervention during their Situational Crisis"; It was used and validated by the author Franco Canales Rosa applied at the Edgardo Rebagliati National Hospital, April 2003. Results:The results show that the overall perception of family members is favorable, regarding verbal communication, non-verbal communication and emotional support[AU]

Introdução: saúde é a condição em que todo ser vivo goza de absoluto bem-estar tanto físico quanto mental e social, quando é acometido por alguma patologia ou por acidentes gerais; Dada a condição física do indivíduo, muitas vezes ele é internado em UTI para controle e monitoramento permanente. O seu atendimento é especificamente orientado para a assistência integral de Médicos e Enfermeiros. A complexidade desse cuidado gera uma crise situacional e emocional na família imediata que causa ansiedade, estresse, medo e dúvidas. A forma como o enfermeiro apoia o familiar em situações críticas ou angustiantes é o que determinará a percepção dos familiares em relação aos enfermeiros, uma vez que a comunicação e o apoio emocional fazem parte da competência profissional e contribuem para o cuidado holístico do paciente. paciente e família. É um cuidado que se reflete no sentimento que os enfermeiros têm de que quando o fazem as famílias ficam muito gratas e que, sem dúvida, é o seu trabalho. Objetivo: Determinar a percepção dos familiares do paciente quanto à comunicação prestada pelo profissional de enfermagem na unidade de terapia intensiva de uma instituição privada. Materiais e Métodos: Foi realizado um estudo quantitativo, descritivo e transversal. A amostra foi composta por 40 familiares adultos responsáveis pelo paciente internado na Unidade de Terapia Intensiva Adulto, durante os meses de junho a setembro de 2023. O instrumento de coleta de informações foi um questionário sobre "Percepção dos familiares de Pacientes Críticos, quanto à intervenção de Enfermagem durante a sua crise situacional"; Foi utilizado e validado pelo autor Franco Os resultados mostram que a percepção geral dos familiares é favorável, no que diz respeito à comunicação verbal, à comunicação não verbal e ao apoio emocional.Canales Rosa apl i c a d o n o Hospital Nacional Edgardo Rebagliati, abril de 2003. Resultados: Os resultados mostram que a percepção geral dos familiares é favorável, no que diz respeito à comunicação verbal, à comunicação não verbal e ao apoio emocional.

Multidisciplinary care for children with cleft lip and palate and their families: Family-Centered Care.

OBJECTIVE: To understand the multidisciplinary care provided to children with cleft lip and palate and their families. METHOD: Descriptive, exploratory and qualitative study, based on the theoretical-philosophical framework of Family-Centered Care, conducted with professionals from the multidisciplinary team of an association supporting individuals with cleft lip and palate. The data were processed using the Iramuteq® software and systematized using Similarity Analysis. The study was approved by the Ethics Committee under opinion no. 4,095,950. RESULTS: Twelve professionals participated, in which the guiding thread for the construction of the classes was the link between the words: Child, Family, Treatment and Difficulty and the alignment with the principles of the Family-Centered Care philosophy, resulting in the following classes: 1. Portrait of assistance from the multidisciplinary team in caring for children and their families (Assistance and Monitoring); 2. Challenges experienced by the team in caring for children and their families (Barriers); and 3. Exercising their (essential) role as a member of the multidisciplinary team (Impact). CONCLUSION: Professionals who care for children with cleft lip and palate and their families encounter barriers during care. However, they provide support to family members and work collaboratively, from the perspective of family-centered care involving participation, dignity, respect, and information sharing.

Confronting Adversity: How the COVID-19 Pandemic Impacted Receiving Difficult News in Neonatal Intensive Care Units.

BACKGROUND AND SIGNIFICANCE: In neonatal intensive care, the communication of difficult news can have lingering repercussions throughout the lives of those receiving such information. Uncertainty and stress associated with the COVID-19 pandemic may negatively influence this sensitive yet essential communication process. PURPOSE: To analyze the communication of difficult news during the COVID-19 pandemic from the perspective of parents of newborns admitted to a neonatal intensive care unit. METHODS: A qualitative, descriptive research study was completed in a hospital in Brazil. Individual and semistructured interviews were conducted with 21 parents of newborns hospitalized in an intensive care unit and submitted to thematic analysis. RESULTS: Three themes were built: "Tools and strategies to manage difficult news," "What makes difficult news hard to listen," and "The importance of being prepared to receive difficult news." When comparing these findings with prepandemic literature, the COVID-19 period changed communication dynamics, including coping tools and altered family dynamics. Additionally, assessing healthcare providers' positive and negative behaviors by parents could clarify essential skills to support the family's hospitalization process during a crisis. IMPLICATIONS FOR PRACTICE AND RESEARCH: Applying and investing in skills training such as spirituality assessment, providing clear and straightforward information, and empathy can reduce the impact of difficult news and, thus, requires both recognition and action from healthcare professionals. Knowing some of the effects COVID-19 had on the communication process for parents with critically ill infants, healthcare providers can better prepare themselves for communication in several scenarios and establish successful interactions.

A critical perspective on institutional violence against hospitalized children: Testimonies by health professionals and family members.

The purpose of this study is to understand institutional violence (IV) in the relationships between health professionals, hospitalized children, and family members. This is a qualitative study developed at the pediatric inpatient unit of a university hospital in the city of Salvador, Bahia, Brazil. The research participants consisted of 39 health professionals who specialized in pediatrics and 10 family members of hospitalized children. Semi-structured interviews were the method used for data collection. Using discourse analysis as a basis and taking a Foucauldian perspective, the researchers observed that the expressions of IV could be traced to abusive power relations within the system. We found four discursive forms within the data set: communication problems as IV, violence through inattention and neglect, violence as an action and consequent materialization on the body, and psychological violence as a submission mechanism. Based on these findings, we argue that professionals, managers, the scientific community, and users might be able to better guarantee the safety of children by recognizing IV and effectively intervening in it.

'Humility, Concern, Respect': A Qualitative Study Exploring Parent Perspectives on a Pediatrician's Role in Addressing Racism.

OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.

Parent-provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study.

BACKGROUND: Effective communication is founded on bidirectional participation from families and healthcare providers. In adult medicine, bidirectional communication promotes treatment adherence and builds the family-provider relationship. However, the relationship between communication styles in pediatrics remains poorly understood, particularly in culturally diverse settings. This study aims to investigate parent-provider communication dynamics and parental involvement during diagnostic cancer communication in Guatemala. PROCEDURE: This qualitative study included 20 families of children with cancer and 10 providers at Unidad Nacional de Oncología Pediátrica in Guatemala. Psychoeducation and diagnostic conversations between parents, psychologists, and oncologists were recorded and thematically analyzed using a priori and novel codes exploring communication behaviors, parental engagement, and interpersonal dynamics. RESULTS: Participating parents had children with various diagnoses. Only 15% of fathers and 5% of mothers reported education beyond primary school. Providers spoke 68% of words during psychoeducation and 85% of words during diagnosis conversations. Providers used supportive communication behaviors providing explanations, demonstrating verbal attentiveness, and soliciting questions and non-supportive behaviors including paternalistic talk. Parental participation was considered active when they asked questions, expressed hopes or concerns, or asserted their opinions, and non-active when participation was limited to brief responses to closed-ended questions. Supportive provider communication often encouraged active participation; non-supportive communication did not. Furthermore, active parental participation prompted supportive communication from providers, while non-active participation did not. CONCLUSIONS: Our findings highlight the bidirectional nature of effective communication, establishing that provider communication styles both influence and are influenced by parental participation, and emphasizing the importance of supportive provider communication for patient-centered care.

Percepção de mães sobre a visitação aberta na unidade de terapia intensiva neonatal / Mothers' perception of open visitation in the neonatal intensive care unit / Percepción de las madres sobre las visitas abiertas en la unidad de cuidados intensivos neonatales

Objetivo: compreender a percepção de mães sobre a visitação aberta na unidade de terapia intensiva neonatal. Métodos: estudo descritivo, qualitativo, realizado por meio de entrevista semiestruturada e individualizada, em uma maternidade pública situada no interior de São Paulo, Brasil, em 2019. A amostra foi definida pelo método de saturação de dados e constou de 14 mães. Os dados foram submetidos a Análise de Conteúdo Temática. Resultados: elencaram-se duas categorias: evidenciando os benefícios da visitação aberta e desafios a serem superados. Os benefícios incluíram a satisfação em permanecer com o filho, participar dos cuidados, fortalecer o vínculo maternal, acompanhar a evolução do bebê, evidenciar a qualidade do cuidado e o envolvimento afetivo, redução de sentimentos negativos e visitação do pai no período noturno. Em contrapartida, os desafios incluíram a impossibilidade de permanecer com o filho, estar presente somente em horários pré-estabelecidos para receber informações de médicos, prioriza-las em relação as fornecidas pela enfermagem, receber informações parciais, ter receio em expressar as dúvidas e vivenciar sentimentos negativos. Conclusão: os achados deste estudo fornecem subsídios para que a equipe de saúde e os gestores promovam a adesão de mães à visitação aberta em unidades de terapia intensiva neonatais. (AU)

Objective: understand the perception of mothers about open visitation in the neonatal intensive care unit. Methods: descriptive, qualitative study, carried out through semi-structured and individualized interviews, in a public maternity hospital located in the interior of São Paulo, Brazil, in 2019. The sample was defined by the data saturation method and consisted of 14 mothers. Data were submitted to Thematic Content Analysis. Results: two categories were listed: showing the benefits of open visitation and challenges to be overcome. The benefits included the satisfaction of staying with the child, participating in care, strengthening the maternal bond, monitoring the baby's evolution, showing the quality of care and affective involvement, reducing negative feelings and visiting the father at night. On the other hand, the challenges included the impossibility of staying with the child, being present only at preestablished times to receive information from doctors, prioritizing it in relation to that provided by nurses, receiving partial information, being afraid to express doubts and experience negative feelings. Conclusion: the findings of this study provide support for the health team and managers to promote the adherence of mothers to open visitation in neonatal intensive care units. (AU)

Objetivo: comprender la percepción de las madres sobre la visita abierta en la unidad de cuidados intensivos neonatales. Métodos: estudio descriptivo, cualitativo, realizado a través de entrevistas semiestructuradas e individualizadas, en una maternidad pública ubicada en el interior de São Paulo, Brasil, en 2019. La muestra fue definida por el método de saturación de datos y estuvo conformada por 14 madres. Los datos se enviaron a Análisis de contenido temático. Resultados: se enumeraron dos categorías: mostrando los beneficios de la visita abierta y los desafíos a superar. Los beneficios incluyeron la satisfacción de quedarse con el niño, participar en los cuidados, fortalecer el vínculo materno, monitorear la evolución del bebé, mostrar la calidad del cuidado y el involucramiento afectivo, reducir los sentimientos negativos y visitar al padre por la noche. Por otro lado, los desafíos incluían la imposibilidad de quedarse con el niño, estar presente solo en horarios preestablecidos para recibir información de los médicos, priorizarla en relación a la brindada por enfermeras, recibir información parcial, tener miedo a expresar dudas y experimentar sentimientos negativos. Conclusión: los hallazgos de este estudio brindan apoyo al equipo de salud y gerentes para promover la adherencia de las madres a la visita abierta en las unidades de cuidados intensivos neonatales. básico sobre las conductas frente a los accidentes, a pesar de desconocieren el flujo de atención del servicio. (AU)

Acerca de la construcción de envoltorios subjetivantes y del armado de una historia: el caso Agustina / De la construction d'enveloppes subjectivantes et du montage d'un histoire: le cas Agustina / About the construction of subjectivizing envelopes and the assembly of a story: the Agustina case / Sobre a construção de envelopes subjetivantes e a montagem de uma história: o caso Agustina

En este trabajo se presentan recortes del caso clínico de una joven de 14 años, en tratamiento durante dos años y medio, encuadrado en el consultorio privado. Se abordan los acontecimientos que generaron quiebres en la continuidad de su historia, y cómo, a través del trabajo con los adultos referentes y con la joven, se habilitaron las posibilidades de un rearmado psíquico que apuntó a la subjetivación de su historia, y a posibilitar las condiciones psíquicas para el ingreso a la adolescencia AU

Cet ouvrage présente des coupures d'un cas clinique d'une jeune fille de 14 ans, en traitement depuis deux ans et demi, cadré dans le cabinet privé. Les événements qui ont généré des ruptures dans la continuité de son histoire sont abordés et comment, à travers le travail avec les références adultes et avec la jeune femme, les possibilités d'un réarmement psychique visant à la subjectivation de son histoire ont été activées et ont permis au conditions psychologiques d'entrée à l'adolescence AU

This work presents clippings of a clinical case of a 14-year-old girl, during twoand a half years of treatment, framed in the private office. The events that generated breaks in the continuity of her story are addressed, and how, through work with the adult references and with the young woman, the possibilities of a psychic rearming that aimed at the subjectivation of her story were enabled, and to enable the psychological conditions for entering adolescence AU

Este trabalho apresenta recortes do caso clínico de uma jovem de 14 anos, durante doisanos e meio de tratamento, enquadrado em consultório particular. São abordados os acontecimentos que geraram rupturas na continuidade de sua história e como, por meio do trabalho com as referências adultas e com a jovem, foram viabilizadas as possibilidades de um rearmamento psíquico que visava à subjetivação de sua história, e possibilitar a condições psicológicas para entrar na adolescencia AU

The processes and outcomes related to 'family-centred care' in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review.

OBJECTIVE: The aim of this study is to identify the main processes and outcomes related to family-centred care (FCC) in neuromotor and functional rehabilitation of preschool children with cerebral palsy (CP). BACKGROUND: FCC is considered a reference for best practices in child rehabilitation. CP is the most common cause of physical disability in childhood with repercussions on functionality. There is a gap in knowledge of the practical principles of FCC, and it is necessary to develop a reference model for the practice of child rehabilitation professionals. METHODS: In this scoping review, the main databases selected were as follows: LILACS; Pubmed; Embase; The Cochrane Library; CINAHL (EBSCO); Scopus; Web of Science; PEDro (Physiotherapy Evidence Database); Open Gray and other banks of thesis. The terms combined in the search strategy were as follows: 'Family-centered', 'Family-centred' and 'CP'. Inclusion criteria are as follows: studies on preschool-aged children with CP, undergoing family-centred functional therapeutic interventions (FCFTI) with outcomes on bodily structures and functions and/or activities and/or participation. RESULTS: The main participatory care methods identified were home intervention, environmental enrichment, collaborative realistic goal setting, planning of home-based activities and routine, child assessment feedback, family education/training, family coaching, encouraging discussion, observation of therapist and supervised practice. The main relational care qualities identified were as follows: respect, active listening, treat parents as equals, clear language, respect parents' ability to collaborate, demonstrate genuine care for the family, appreciate parents' knowledge and skills, demonstrate competence, experience and commitment. The main outcomes identified in children were improvement in motor and cognitive function and the child's functional ability. The main parentaloutcomes identified were empowerment, feeling of competence, self-confidence, motivation and engagement. CONCLUSION: The main differences in FCFTI programs refer to the parental education/guidance component and the amount of intervention carried out by parents. It is possible that the elements chosen by the therapist in a FCFTI depend on characteristics of the child and caregivers.

Grasping the meaning of perinatal palliative care for the multiprofessional team.

OBJECTIVE: To grasp the meaning of perinatal palliative care for the multidisciplinary team. METHODS: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public university hospital. A semi-structured interview was conducted, which was recorded and subsequently fully transcribed. The collection took place from June 2018 to May 2019. Data were entered and exported to Atlas ti: The Qualitative Date Analysis & Research Software, version 23.1.1.0. RESULTS: Four thematic categories emerged from the data analysis: palliative care and eligible public in the view of professionals; communication between family and team in decision-making; assistance in palliative care; humanized care. CONCLUSIONS: The professionals think of palliative care in Perinatology in a similar way and perceive the difficulties of communication with the family and decision-making. They agree that it is necessary to provide greater support to the family, and to provide comfort measures, either for the non-viable fetus or for the baby eligible for palliative care.

Family-professional collaborative intervention via telehealth with an infant with Down syndrome and visual impairment: a case report.

BACKGROUND: Collaborative interventions, involving partnerships between professionals and families, make it possible to actively engage families in the rehabilitation process. However, no study was found that used a physiotherapy intervention via telehealth for infants with Down syndrome (DS). OBJECTIVE: Describe the case report of a family-professional collaborative intervention via telehealth for an infant with Down syndrome and visual impairment during the COVID-19 pandemic. CASE DESCRIPTION: A male infant five months old participated in a collaborative intervention for a period of eight weeks. Three goals were set with the family, and a goal-oriented home program, involving visual stimulation strategies, was organized. OUTCOMES: Two goals were achieved. The family scored changes in performance and satisfaction with the infant's performance according to the adapted Canadian Occupational Performance Measure. Improvement of motor skills was verified by Alberta Infant Motor Scale and changes in mobility and daily activities performance were measured by the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test. CONCLUSION: The use of family-professional collaborative intervention via telehealth during the COVID-19 pandemic shows promising results for achieving the goals established by the family collaboratively with the physical therapists.

Modifications in family centered developmental care and in neonatal intensive care during the COVID-19 pandemic in a hospital in Spain: A qualitative study.

INTRODUCTION: Family centered developmental care (FCDC) are a philosophy of care in the neonatal care units (NICU), based on the control of sensory stimulation the adequate position and of newborn and the family involvement of cares. Nursing staff are the main providers of this care. Sanitary measure to control of the COVID-19, such as the use of masks, isolation of positive cases and capacity limit, conditioned the implementation of FCDC. OBJECTIVES: To understand the meaning of the experience of the nursing staff of a neonatal intensive care unit (NICU) on the implementation of the FCDC, under the sanitary measures imposed for the containment of COVID-19. METHODS: A qualitative study was conducted from the descriptive phenomenological paradigm in which NICU nurses were recruited. The qualitative data collection was carried out through open-ended and semi-structured interviews. These were analyzed respectively through a preliminary narrative analysis and a thematic analysis of the informant nurses' narratives and discourses. RESULTS: Three open-ended and 7 semi-structured interviews were conducted from which three main topics emerged: 1) changes in the FCDC derived from the sanitary restrictions implemented for the containment of COVID-19; 2) changes in interpersonal relationships in the context of a pandemic, and 3) transition to normality. CONCLUSIONS: The nurses of NICU perceived changes in the implementation of the FCDC due to the containment of COVID-19, that modified the relationship with the parents of NB, accelerating their training as caregivers, and involved the implementation of new measures such as video calls.

Applying the Generalizability Theory to Identify the Sources of Validity Evidence for the Quality of Communication Questionnaire.

Effective doctor-patient-family communication is an integral and sensitive part of health care, assessing its quality is essential to identify aspects needing disclosure and, if necessary, improvement. Cross-sectional study aimed to analyze the sources of evidence of validity and the number of participants needed to reliably apply the Quality of Communication Questionnaire (QoC) through Generalizability Theory (GT). The mean age of the 150 patients hospitalized at the end of life was 50.5 (SD = 13.8) years, the mean hospital length of stay was 7.5 (SD = 10.2) days, 56.9% were male. Regarding the 105 patients' family members of patients whose mean length of hospital stay was 9.5 (SD = 9.1) days, their mean age was 42.2 (SD = 14.7) years, 69.5% were female. GT was used to quantify the minimum number of questionnaires needed, with the aim of reaching a reliable estimate of QoC with G-coefficients. To reach a reliability of .90, there is a need for 25 for the Eρ2 questionnaires and 35 for the Φ. The exact estimation identified the minimum number of questionnaires required for the evaluation of physicians by patients. To obtain a reliability of .90, there is a need for 30 and 40 questionnaires for the G-coefficients. A practical and fast application makes it possible to use QoC in its entirety or alone to evaluate general communication or communication about palliative care. Furthermore, based on these results, it was possible to identify which aspects were effective or ineffective in these contexts.

Percepção de profissionais de enfermagem sobre o cuidado prestado ao neonato com estomia de eliminação intestinal / Percepción de profesionales de enfermería sobre el cuidado prestado al neonato con ostomía de eliminación intestinal / Nursing professionals' perceptions of the care provided to the neonate with intestinal elimination ostomy

Resumo Objetivos Conhecer a percepção da equipe de enfermagem da unidade neonatal sobre os cuidados prestados ao recém-nascido hospitalizado com estomia intestinal e discutir os fatores que interferem na assistência de enfermagem. Método Estudo exploratório, descritivo, com abordagem qualitativa. Participaram oito enfermeiros e oito técnicos de enfermagem que trabalham em uma Unidade Neonatal do Rio de Janeiro. Os dados foram coletados entre abril e junho de 2022, através de entrevista semiestruturada e análise de conteúdo. Resultados Emergiram duas categorias: "percepções da equipe de enfermagem quanto ao cuidar de recém-nascidos hospitalizados com estomias intestinais e a educação em saúde da família"; e "aspectos facilitadores e dificultadores da assistência de enfermagem ao recém-nascido com estomia intestinal e a importância da educação permanente no cenário da Unidade Neonatal". Conclusão e implicações para prática O manejo de neonatos com estomias intestinais é atual e implica em cuidados de enfermagem com o estoma e pele do recém-nascido, estendendo-se para a prática da educação em saúde dos familiares. É desafiador o manejo de complicações, a indisponibilidade de materiais e o cuidado fragmentado. Tal achado pode subsidiar o desenvolvimento de intervenções de enfermagem sistematizada para os recém-nascidos e seus pais na unidade neonatal.

Resumen Objetivos Conocer la percepción del equipo de enfermería de la unidad neonatal sobre el cuidado prestado al neonato hospitalizado con ostomías intestinales y discutir los factores que interfieren en el cuidado de enfermería. Método Estudio exploratorio, descriptivo, con abordaje cualitativo. Participaron ocho enfermeros y ocho técnicos de enfermería que actúan en una Unidad Neonatal de Rio de Janeiro. Datos colectados entre abril y junio de 2022, por entrevistas semiestructuradas y análisis de contenido. Resultados Emergieron dos categorías: "percepciones del equipo de enfermería sobre el cuidado al recién nacido hospitalizado con ostomías intestinales y la educación en salud de la familia"; y "aspectos que facilitan y dificultan el cuidado de enfermería al recién nacido con ostomía intestinal y la importancia de la educación continua en el ámbito de la Unidad Neonatal". Conclusión e implicaciones para la práctica El manejo de neonatos con ostomías intestinales es actual e implica cuidados de enfermería con el estoma y la piel del recién nacido, extendiéndose a la práctica de educación en salud para familiares. El manejo de complicaciones, la falta de materiales y la atención fragmentada son desafíos. Este hallazgo puede apoyar el desarrollo de intervenciones de enfermería sistematizadas para los recién nacidos y sus padres en la unidad neonatal.

Abstract Objectives To understand the perception of the nursing team of the neonatal unit about the care provided to hospitalized newborns with intestinal ostomy and to discuss the factors that interfere in nursing care. Method Exploratory and descriptive study, with a qualitative approach. Eight nurses and eight nursing technicians who work in a Neonatal Unit in Rio de Janeiro took part. Data were collected between April and June 2022, through semi-structured interviews and content analysis. Results Two categories emerged: "perceptions of the nursing team regarding the care of hospitalized newborns with intestinal ostomies and family health education"; and "facilitating and hindering aspects of nursing care for newborns with intestinal ostomy and the importance of continuing education in the setting of the Neonatal Unit". Conclusion and implications for practice The management of newborns with intestinal ostomies is current and involves nursing care with the stoma and skin of the newborn, extending to the practice of health education for family members. The management of complications, the unavailability of materials and fragmented care are challenging. This finding can support the development of systematized nursing interventions for newborns and their parents in the neonatal unit.

Parental presence during invasive pediatric procedures: what does it depend on? / A presença dos pais durante procedimentos pediátricos invasivos: depende de quê? / Presencia de los padres durante procedimientos pediátricos invasivos: ¿De qué depende?

Abstract Objective: family-centered care during invasive procedures has been endorsed by many professional health care organizations. The aim of this study was to evaluate the health professionals' attitudes towards parental presence during their child's invasive procedure. Method: pediatric healthcare providers (divided in professional categories and range of ages) from one of the Spain's largest hospitals were asked to complete a questionnaire and write free-text comments. Results: 227 responded the survey. Most (72%) participants, in their answers, reported that parents are sometimes present during interventions, although there were differences between professional categories in this respect. The procedures in which the parents were present were those considered "less invasive" (96% of cases), while only 4% were present in those considered "more invasive". The older the professional, the less necessary parental presence was considered. Conclusion: the attitudes towards parental presence during pediatric invasive procedure are influenced by the professional category, the age of the healthcare provider and the invasiveness of the procedure.

Resumo Objetivo: o atendimento centrado na família durante procedimentos invasivos tem sido endossado por muitas organizações profissionais de saúde. O objetivo deste estudo foi avaliar as atitudes dos profissionais de saúde em relação à presença dos pais durante o procedimento invasivo realizado em seus filhos. Método: os prestadores de serviços de saúde pediátricos (divididos em categorias profissionais e faixa etária) de um dos maiores hospitais da Espanha foram solicitados a preencher um questionário e escrever comentários de texto livre. Resultados: a pesquisa foi respondida por 227 pessoas. A maioria (72%) dos participantes, em suas respostas, relatou que os pais algumas vezes estão presentes durante as intervenções, embora houvesse diferenças entre as categorias profissionais a esse respeito. Os procedimentos em que os pais estavam presentes eram aqueles considerados "menos invasivos" (96% dos casos), enquanto apenas 4% estavam presentes naqueles considerados "mais invasivos". Quanto mais velho o profissional, a presença dos pais foi considerada menos necessária. Conclusão: as atitudes em relação à presença dos pais durante o procedimento pediátrico invasivo são influenciadas pela categoria profissional, a idade do prestador de serviço de saúde e a invasividade do procedimento.

Resumen Objetivo: la atención centrada en la familia durante procedimientos invasivos ha sido respaldada por muchas organizaciones profesionales dedicadas al cuidado de la salud. El objetivo de este estudio fue evaluar las actitudes de los profesionales de la salud con respecto a la presencia de los padres durante los procedimientos invasivos realizados en niños. Método: a los prestadores de atención médica en Pediatría (divididos en categorías profesionales y rangos de edad) de uno de los hospitales más importantes de España se les solicitó que respondieran un cuestionario y redactaran comentarios de texto libre. Resultados: un total de 227 profesionales respondieron la encuesta. En sus respuestas, la mayoría (72%) de los participantes informó que, en ocasiones, los padres están presentes durante las intervenciones, aunque se registraron diferencias entre las distintas categorías profesionales al respecto. Los procedimientos en los que los padres estuvieron presentes se consideraron como "menos invasivos" (96% de los casos), mientras que solamente el 4% estuvo presente en los considerados "más invasivos". A mayor edad de los profesionales, menos necesaria se consideró la presencia de los padres. Conclusión: las actitudes con respecto a la presencia de los padres durante procedimientos pediátricos invasivos se vieron influenciadas por la categoría profesional, la edad del prestador de salud y la invasividad de los procedimientos.

Percepções das mães que são profissionais de saúde sobre as relações na unidade neonatal / Health professionals mothers' perceptions about relationships in the neonatal unit / Percepciones de las madres profesionales de la salud sobre las relaciones en la unidad neonatal

Objetivo: discutir as percepções das mães que são profissionais de saúde sobre as relações na unidade neonatal. Método: estudo qualitativo, apoiado no Interacionismo Simbólico, com 11 mães de recém-nascidos pré-termo que são profissionais da saúde. Após aprovação pelo Comitê de Ética em Pesquisa, os dados foram coletados de maio a outubro de 2021, por meio de entrevistas individuais, e submetidos à análise de conteúdo temática. Resultados: apesar de as mães serem profissionais da saúde, as relações na unidade neonatal foram difíceis, sofridas, desconfortantes e restritivas ao processo de 'ser e tornar-se mãe'. Estas desvelaram sentimentos de não pertencimento ao cuidado e de afastamento de suas crianças. Conclusão: as relações entre mães e profissionais da saúde atuantes na unidade neonatal estiveram marcadas por sofrimentos, limitações e desconfortos, sendo lacunares em processos colaborativos, na contramão do Cuidado Centrado na Família(AU)

Objective: to discuss the perceptions of mothers who are health professionals about relationships in the neonatal unit. Method: a qualitative study, based on Symbolic Interactionism, with 11 mothers of preterm newborns who are health professionals. After approval by the Research Ethics Committee, data was collected from May yo October 2021, through individual interviews, and subjected to thematic content analysis. Results: despite the mothers being health professionals, relationships in the neonatal unit were difficult, painful, uncomfortable, and restrictive to the process of 'being and becoming a mother'. They revealed feelings of not belonging to care and of being away from their children. Conclusion: the relationships between mothers and health professionals working in the neonatal unit were marked by suffering, limitations, and discomfort, and were lacking in collaborative process, going against Family-Centered Care(AU)

Objetivo: discutir las percepciones de las madres profesionales de salud sobre las relaciones en la unidad neonatal. Método: estudio cualitativo, basado en el Interaccionismo Simbólico, con 11 madres de recién nacidos prematuros que son profesionales de la salud. Previa aprobación del Comité de Ética en Investigación, se recolectaron los datos de mayo a octubre de 2021, mediante entrevistas individuales y los sometieron a análisis temático de contenido. Resultados: aunque las madres eran profesionales de salud, las relaciones en la unidad neonatal fueron difíciles, dolorosas, incómodas y restrictivas al proceso de 'ser y volverse madre'. Revelaron sentimientos de no pertenencia a los cuidados y de alejamiento de sus hijos. Conclusión: las relaciones entre las madres y los profesionales sanitarios que trabajan en la unidad neonatal estaban marcadas por el sufrimiento, las limitaciones y la incomodidad, y carecían de procesos de colaboración, lo que iba en contra de la Atención Centrada en la Familia(AU)

Una revisión acerca del cuidado de la salud mental en las familias de la Unidad de Cuidados Intensivos Neonatales / A Review of the Mental Health Care of Families in the Neonatal Intensive Care Unit

Introducción: el presente trabajo es una revisión de las prácticas que abordan la salud mental perinatal de las familias que atraviesan una internación en Unidades de Cuidados Intensivos Neonatales (UCIN). Los logros en la mayor sobrevida de recién nacidos de alto riesgo implican internaciones prolongadas y el cuidado emocional de sus familias. Estado del arte: el marco conceptual se refiere al cuidado centrado en las personas y su expresión perinatal en el modelo de Maternidades Seguras y Centradas en la Familia (MSCF). Se incluyen experiencias de referentes locales e internacionales que orientan las intervenciones en el campo. Conclusiones: se destaca la importancia del cuidado emocional en escenarios altamente estresantes, dado su impacto en el cuidado y la construcción de los vínculos tempranos entre los recién nacidos (RN) internados y sus referentes primarios. Se mencionan factores psicológicos de riesgo y posibles modos de abordaje. Se plantean acciones de promoción, prevención y asistencia en este contexto. (AU)

Introduction: This paper reviews practices addressing the perinatal mental health of families hospitalized in Neonatal Intensive Care Units (NICU). Achievements in increased survival of high-risk newborns involve prolonged hospitalization and emotional care of their families. State of the art:the conceptual framework refers to person-centered care and its perinatal expression in the Safe and Family-Centered Maternity Model (SFCMM). It includes experiences of local and international referents that guide interventions in the field. Conclusions:the importance of emotional care in highly stressful scenarios is highlighted, given its impact on the care and construction of early bonds between hospitalized newborns (NB) and their primary referents. It mentions psychological risk factors and possible approaches. We propose actions for promotion, prevention, and assistance in this context. (AU)

Representaciones sociales sobre la autonomía en la relación clínica de niños y niñas de 6 a 12 años de los y las profesionales de la salud en Uruguay / Social representations on the autonomy in the clinical relationship of children from 6 to 12 years and health professionals of the first level of care / Representações sociais sobre a autonomia na relação clínica de crianças de 6 a 12 anos dos profissionais de saúde do primeiro nível de atenção

El presente trabajo tiene como objetivo presentar la producción científica identificada en relación a las representaciones sociales de los profesionales de la salud acerca de la autonomía de niños y niñas para la toma de decisiones en la relación clínica. Se realiza desde una revisión integrativa, y la búsqueda se realiza en las bases Scientific Electronic Library Online (SciELO), Literatura Latinoamericana y del Caribe en Ciencias de la Salud (LILACS) y PubMed en el período de mayo a julio de 2022. A partir de la búsqueda realizada en las 3 bases de datos seleccionadas muestran un total de 10181 artículos consultados en una primera etapa, con una pre-selección de 79 artículos, atendiendo a la correlación de las temáticas abordadas por los títulos y los resúmenes de los artículos, de acuerdo a los objetivos generales y específicos de la revisión integrativa. A partir de una lectura completa de los artículos se seleccionan 35, y luego de eliminar los artículos que se reiteran en diferentes bases de datos, se seleccionan finalmente 24. La búsqueda realizada no identifica producción científica específica acerca de las representaciones de los y las profesionales de la salud respecto a la autonomía de niños y niñas para la toma de decisiones en salud. Se reafirma la importancia de producir conocimiento en esta área como forma de visibilizar aristas de los discursos y las prácticas en salud que no se explicitan, no obstante, podrían incidir en los modos de habilitar el ejercicio de la autonomía en la atención a la salud de niños y niñas.

This paper aims to present the scientific production identified in relation to the social representations of health teams about the autonomy of children for decision making in the clinical relationship. The integrative review was based on the publication from Scientific Electronic Library Online (SciELO), Latin American and Caribbean Literature in Ciências da Saúde (LILACS) and PubMed bases, during May and July,202. The final results, from the search carried out in the 3 selected databases show: i) a total of 10181 articles consulted in a first stage, ii) a pre-selection of 79, based on the correlation of the topics addressed by the titles and summaries of the articles with the general and specific objectives of the integrative review, iii) from a complete reading of the articles are selected 35, iv) after eliminating the articles that are repeated in different databases, finally selected 24. The search does not identify specific scientific production about the representations of health workers regarding the autonomy of children for health decision making. The importance of producing knowledge in this area is reaffirmed as a way to make visible the edges of the discourses and health practices that are not explained; however, they could influence the ways of enabling the exercise of autonomy in the health care of children.

Este artigo tem como objetivo apresentar a produção científica identificada em relação às representações sociais dos profissionais de saúde sobre a autonomia da criança para toma da de decisão na relação clínica. É realizado a partir de uma revisão integrativa, e a pesquisa é realizada nas bases da Scientific Electronic Library Online (SciELO), da América Latina e do Caribe em Ciências da Saúde (LILACS) e PubMed y PubMed no período de maio a julho de 2022.Os resultados finais, a partir da busca realizada nas 3bases de dados selecionadas, mostram: i) um total de 10181 artigos consultados em uma primeira etapa; ii) uma pré-seleção de 79, com base na correlação dos tópicos abordados por os títulos e resumos dos artigos com os objetivos gerais e específicos da revisão integrativa; iii) a partir de uma leitura completa dos artigos, são selecionados 35; iv)após a eliminação dos artigos repetidos em diferentes bases de dados; finalmente selecionado 24. A busca não identificou ou produção científica específica sobre as representações dos trabalhadores da saúde em relação à autonomia das crianças para a toma da de decisões em saúde. A importância de produzir conhecimento nessa área é reafirmada como forma de tornar visíveis as arestas dos discursos e práticas de saúde que não são explicadas, no entanto, podem influenciar as formas de viabilizar o exercício da autonomia no cuidado à saúde da criança.

Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care.

OBJECTIVE: To explore the perspectives of parents of undiagnosed children enrolled in genomic diagnosis research regarding their motivations for enrolling their children, their understanding of the potential burdens and benefits, and the extent to which their experiences ultimately aligned with or diverged from their original expectations. STUDY DESIGN: In-depth interviews were conducted with parents, audio-recorded and transcribed. A structured codebook was applied to each transcript, after which iterative memoing was used to identify themes. RESULTS: Fifty-four parents participated, including 17 (31.5%) whose child received a diagnosis through research. Themes describing parents' expectations and experiences of genomic diagnosis research included (1) the extent to which parents' motivations for participation focused on their hope that it would directly benefit their child, (2) the ways in which parents' frustrations regarding the research process confused the dual clinical and research goals of their participation, and (3) the limited clinical benefits parents ultimately experienced for their children. CONCLUSIONS: Our results suggest that parents of undiagnosed children seeking enrollment in genomic diagnosis research are at risk of a form of therapeutic misconception-in this case, diagnostic misconception. These findings indicate the need to examine the processes and procedures associated with this research to communicate appropriately and balance the potential burdens and benefits of study participation.