A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care.

Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design: Post hoc secondary analysis of data from a qualitative cross-sectional study. Setting/Subjects: Semistructured interviews conducted between August 2019 and February 2020 with parents of children with SNI and interprofessional clinicians at a single tertiary children's hospital in the United States. Measurement: Data from codes pertaining to strategies to promote therapeutic alliance were extracted for inductive thematic analysis and to collate ideas for tools suggested by participants. The research team iteratively discussed each proposed tool, developed an example representative depiction, and expanded upon potential opportunities and limitations of the tools' practical implementation. Results: Twenty-five parents/legal guardians and 25 interprofessional clinicians participated. The median age of parents/legal guardians was 38 [interquartile range 35,48]. Sixty-eight percent (n = 17) identified as mothers and 68% (n = 17) identified as white. Clinicians were predominantly female (84%, n = 21) and represented 8 professions and 15 specialties. Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts.

Family Integrated Care for Preterm Infants.

Parent-infant separation is a major source of stress for parents of hospitalized preterm infants and has negative consequences for infant health and development. Family Integrated Care (FICare) uses a strengths-based approach, based on family-centered care principles to promote parental empowerment, learning, shared decision making, and positive parent-infant caregiving experiences. Outcomes of FICare include increased self-efficacy upon discharge and improved parent-infant relationships and infant developmental outcomes. In this article, the authors describe the FICare model and emerging evidence regarding outcomes of FICare for infants and families and discuss challenges and opportunities in implementing and maintaining high-quality FICare.

Child and family health nursing: A workforce profile.

AIMS AND OBJECTIVES: To develop a profile of registered nurses working in Child and Family Health services across the Northern Sydney Local Health District to inform workforce strategic planning. BACKGROUND: Child and family health nurses (CFHNs) are registered nurses holding recognized qualifications in child and family health. To date, information regarding Child and family health nurses has been very limited. METHODS: The survey was conducted using a self-administrated online questionnaire between March-June 2017. RESULTS: Just over 75% of the respondents were aged over 50 years. Job satisfaction and feeling valued are enablers for remaining in current positions and not feeling valued can contribute to leaving employment. Nearly, one-third of respondents are currently a carer. CONCLUSION: This study provides an insight into the demographics of Child and family health nurses in Northern Sydney Local Health District, including roles as carers. It also examines factors influencing Child and family health nurses to remain or leave current positions. IMPLICATION FOR NURSING MANAGEMENT: This survey has drawn attention to the need for managers to urgently develop strategies, for example succession planning, to ensure that shortages of these experienced Child and family health nurses do not occur. The inability to staff Child and Family Health could potentially impact on the ability to provide services and meet key performance indicators.

Práticas educativas em enfermagem de saúde familiar: contributo para o desenvolvimento das competências clínicas dos enfermeiros / Educational practices in family health nursing: contribution to the development of nurses' clinical skills

Introduction: Internationally, research on educational practices in family health nursing has been limited, especially on their impact on clinical practice. This research is part of the project on the Dynamic Model of Family Assessment and Intervention integrated in the Center for Health Technology and Services Research. Objective: to describe the perception of family nurses about the contribution of teaching-learning strategies in the development of skills in family health nursing. Methods: quantitative, exploratory-descriptive study. A questionnaire was designed to evaluate the perception of the contribution of teaching-learning strategies based on a Portuguese classification. Perception was assessed on a Likert scale. The convenience sample consisted of 112 nurses who trained on the Dynamic Model of Family Assessment and Intervention after informed consent. Descriptive statistics was used for data treatment and analysis. Results and discussion: On average, mostly all strategies were perceived as having a moderate to high contribution (3.58, SD: 0.6), with a slight emphasis on the "reality simulation" teaching-learning strategies group. The "Case Study" stood out as the strategy perceived with the highest average contribution. It is suggestive that there is greater importance given to experiential learning as a promoter of knowledge and competence development, based on reflexivity about action. Conclusion: The identification of the contribution of the teaching-learning strategies is relevant for the improvement of the training design on the nursing model, as an intentional action promoting a competent acting knowledge, aiming the articulation of the theory with the clinical practice

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The experience of being a couple during an intensive care unit admission.

BACKGROUND: In critical care nursing, a trend has been seen towards growing attention to the family experience of critical illness. Despite trends moving towards care of the family as a unit, previous research has focused on individual family members' experience of critical illness. Exploring the life world of the family, especially that of spouses and their interaction, is essential to providing family-centred critical care and has not previously been described. AIM: To explore the lived experience of being a couple during admission to an intensive care unit. DESIGN: Data were collected through dyadic semi-structured interviews with four couples who had experienced admission to an intensive care unit. Interviews were audio-taped and transcribed verbatim. METHOD: Grounded in the phenomenological-hermeneutic tradition, data were analysed using Ricoeur's theory of interpretation, using a method described by Dreyer and Pedersen. RESULTS: By way of analysis, the life world of being a couple during admission to an intensive care unit was disclosed and divided into themes: For better and for worse; The meaningful proximity; and Being a couple. CONCLUSION: Although critical illness brings a sudden disruption of a couple's twosomeness, the need to remain, act as and be seen and cared for as a couple persists during admission to an intensive care unit. Therefore, couples need to be cared for as individuals and as a unit, underlining the need to follow trends towards family-centred critical care.

Bridging the Child and Family Centered Care Gap: Therapeutic Conversations with Children and Families.

Professor Linda Shields and Dr Mandie Foster from Charles Sturt University and Edith Cowan University in Australia discuss several models of care for children and families that exist and the prospect of using conversations with children and families as an intervention within healthcare to facilitate a child and family centered care approach.

Enfermería Familiar y Comunitaria: claves de presente, retos de futuro / Community and family nurse: Present keys, future challenges

El/la enfermero/a de familia y comunitaria es el profesional que a través de una mirada integral y holística asume la misión de acompañar a las personas desde su nacimiento hasta la muerte para desarrollar su potencial de salud, promocionando los diferentes entornos familiares, laborales y sociales para facilitar dicho desarrollo. A lo largo de la historia, diversos organismos de ámbito internacional, europeo y nacional, han ido regulando la figura de estos profesionales de enfermería de familia y comunitaria, hasta la fecha actual, donde existe normativa que regula de pleno derecho sus funciones, atribuciones y desempeño profesional. El personal de enfermería de familia y comunitaria puede dar respuestas a las necesidades de una población cambiante, y que asume nuevas responsabilidades en la gestión y la investigación. Sus amplias competencias básicas y avanzadas recogidas en un riguroso programa formativo suponen una mejora para el sistema sanitario, la profesión enfermera y la ciudadanía y la comunidad en la que vive. Aún existen muchos retos para que cada Consejería de Salud de cada comunidad haga posible que esta especialidad desarrolle todo su potencial de mejora de los cuidados

It is the mission of the Community and Family Nurse through an integral and holistic approach to accompany people from cradle to death in developing their health potential, and promote different family, work and social environments to facilitate this development. Throughout history, various international, European and national organizations have regulated the figure of the Community and Family Nurse, and now their functions, powers and professional performance are fully regulated. The Community and Family Nurse can respond to the needs of a changing population and take on new responsibilities in management and research. Their extensive basic and advanced skills gathered under a rigorous training programme, benefit the health system, the nursing profession, citizenry and its communities. Many challenges remain for the Health Departments of each Autonomous Region to make it possible for this specialty to develop its full potential for improving care

Community and family nurse: Present keys, future challenges. / Enfermería Familiar y Comunitaria: claves de presente, retos de futuro.

It is the mission of the Community and Family Nurse through an integral and holistic approach to accompany people from cradle to death in developing their health potential, and promote different family, work and social environments to facilitate this development. Throughout history, various international, European and national organizations have regulated the figure of the Community and Family Nurse, and now their functions, powers and professional performance are fully regulated. The Community and Family Nurse can respond to the needs of a changing population and take on new responsibilities in management and research. Their extensive basic and advanced skills gathered under a rigorous training programme, benefit the health system, the nursing profession, citizenry and its communities. Many challenges remain for the Health Departments of each Autonomous Region to make it possible for this specialty to develop its full potential for improving care.

Family and community nursing, chronology of a specialty. / Enfermería familiar y comunitaria, cronología de una especialidad.

More the 30 years have passed since the first Royal Decree that regulated nursing specialties was published in 1987. It is the Royal Decree published in 2005 that really allowed the training development of part of the specialties recognized in it (family and community nursing, paediatric nursing, geriatric nursing and occupational health nursing) since the obstetric-gynaecological specialist nurses (midwives) and mental health specialists had long since already started their training processes through the resident internal nurse model, today, training in the specialty of family and community nursing has been implemented in all the autonomous communities, but has not had the same development in terms of the incorporation of specialists in the health institutions of the respective health services of the autonomous communities This circumstance is generating a great lack of motivation among community nurses, both specialists and those who hope to obtain the qualification through a specialty exam. Many of the objectives achieved to date have been made possible thanks to the work of the scientific societies of community nursing (Association of Community Nursing [AEC] and Federation of Associations of Community Nursing and Primary Care [FAECAP]), which have allowed progress to be made and the process not to be halted, although there are still many achievements to be made on which the aforementioned scientific societies continue to work. In a society in which nursing care is increasingly necessary and demanded, it must have greater consideration and position in health policies, since it has demonstrated its effectiveness and can be the model that allows the health system to be sustainable. Therefore, nurses who specialize in family and community nursing must cease constituting an opportunity and become a reality.

La resiliencia familiar como activo en salud / Family resilience as a health asset

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Necessidades de familiares de pacientes internados em unidade de terapia intensiva / Necesidades de familiares de pacientes internados en unidad de terapia intensiva / Needs of the relatives of patients hospitalized in an intensive therapy unit

Objective: The study's goal has been to identify the needs of the relatives of people hospitalized in an Intensive Care Unit from the interior of the Paraná State. Methods: Data were collected from May to September 2017, through the application of the Critical Care Family Needs Inventory (CCFNI) to 55 patients' family members. It was performed a descriptive and inferential analysis. Results: The most valued needs were those related to information, safety in knowing that the family member is receiving the best treatment and having access/ possibility of being able to talk with the physician at the visit time. Conclusion: Knowing the needs of family members is an important tool to assess the aspects related to the delivered care, and also provides subsidies for implementing actions that guarantee better quality of care for the patients and their families

Objetivo: Identificar as necessidades dos familiares de pessoas internadas em uma Unidade de Terapia Intensiva (UTI) no interior do Estado do Paraná. Método: Os dados foram coletados no período de maio à setembro de 2017, por meio da aplicação do Inventário de Necessidades e Estressores de Familiares em Terapia Intensiva (INEFTI) a 55 familiares. Realizado análise descritiva e inferencial. Resultados: As necessidades mais valorizadas foram as relacionadas com informação, segurança em saber que o familiar está recebendo o melhor tratamento e de ter acesso/possibilidade de poder conversar com o médico no momento da visita. Conclusão: Conhecer as necessidades dos familiares se faz como uma importante ferramenta de avaliação dos aspectos relacionados ao cuidado prestado e fornece subsídios para implementação de ações que garantam melhor qualidade da assistência ao paciente e a família

Objetivo: Identificar las necesidades de los familiares de personas internadas en una Unidad de Terapia Intensiva (UTI) en el interior del Estado de Paraná. Método: Los datos fueron recolectados en el período de mayo a septiembre de 2017, por medio de la aplicación del Inventario de Necesidades y Estresores de Familiares en Terapia Intensiva (INEFTI) a 55 familiares. Realizado análisis descriptivo e inferencial. Resultados: Las necesidades más valoradas fueron las relacionadas con información, seguridad en saber que el familiar está recibiendo el mejor tratamiento y de tener acceso/posibilidad de poder conversar con el médico en el momento de la visita. Conclusión: Conocer las necesidades de los familiares se hace como una importante herramienta de evaluación de los aspectos relacionados al cuidado prestado y proporciona subsidios para implementación de acciones que garanticen mejor calidad de la asistencia al paciente y la familia

Enfermería familiar y comunitaria: ¿Qué enseñar? ¿Qué sabemos y hacemos? ¿Qué sabemos y no hacemos?: Un análisis desde la perspectiva del desarrollo de competencias / Community and family health nursing: what to teach? What do we know and do? What do we know and not do? an analysis from the perspective of competency development

Las competencias en la especialidad de enfermería familiar y comunitaria las establece la ley, tanto en términos de formación como del ejercicio de la especialidad. Son de adquisición progresiva y plantean tres cuestiones: qué debemos enseñar cada año, qué no podemos enseñar porque no lo sabemos y qué no podemos enseñar porque no lo hacemos. Se describe una línea de investigación con metodología mixta que responde a dos objetivos: facilitar el aprendizaje de residentes y una guía a los tutores; y, de otra parte, conocer la autopercepción de conocimientos y necesidades de formación de las enfermeras de Atención Primaria en sus perfiles y lugares de trabajo. Se diferencian estilos de práctica enfermera entre práctica técnica, controladora y metodóloga. Esta propuesta se basa en cruzar el proceso de resolución de problemas con la actitud resolutiva de la enfermera y su requerimiento de información para documentar el proceso. El número de especialistas es importante y va a aumentar a corto plazo. Son un recurso humano con un alto nivel de competencia avalado por la ley y disponible para desplegar un arsenal de competencias que mejorarán sin duda la calidad del sistema sanitario, público y privado. Sin embargo, en la actualidad, no se les utiliza como prestadores de servicios avanzados. La ley abre la posibilidad de seguir avanzando en la acreditación de competencias y para ello se dispone de dos caminos aún inexplorados por las enfermeras. Uno dentro de la especialidad, las áreas de capacitación, y otro fuera, los diplomas de acreditación y acreditación avanzada. El enfoque de competencias abre oportunidades para todo el sistema: pacientes, usuarios y cuidadoras; enfermeras y otros profesionales de la salud. El reto es llevar a la práctica las ventajas que ofrece la especialidad con la visión de enfermería de práctica avanzada, en la gestión clínica, la mesogestión y la política sanitaria. Tal vez, la participación de las enfermeras en la política sanitaria marcará el camino para ello

In terms of training and practice, the competencies required for community and family health nursing are established by law. They are acquired progressively and raise three educative issues: what should we teach each year; what we cannot teach because we do not know; and what we cannot teach because we do not do. The following article describes a line of research based on a mixed methodology that responds to two objectives: to facilitate residents' learning process and to provide a guide for tutors; while at the same time to learn about the self-perception of knowledge and training needs of primary healthcare nurses, consistent with their profiles and workplaces. Nursing practice styles can be classified as technical, controlling and methodological. This proposal aims at crossing nurses' problem-solving process and problem-solving attitude, together with their need for information in order to document the nursing process. The number of nursing specialists is significant and will increase in the short term. These specialists are a human resource with a high level of competency guaranteed by law, and are readily available to deploy an arsenal of skills that will undoubtedly improve the quality of the public and private healthcare system. Unfortunately, they are currently not being harnessed as advanced service providers. The current law opens up the possibility for further progress in the accreditation of competencies, opening two paths that still remain unexplored. One relies within the specialty, in the area of training; and the other one can be found outside, among the accreditation diplomas and advanced accreditation. The competency-approach opens up opportunities for the entire healthcare system: patients, users and caretakers, together with nurses and other health professionals. The challenge is to put into practice the advantages offered by nursing specialties, consistent with the vision of advanced practice nursing in clinical management, meso-management and health policy. Perhaps the involvement of nurses in health policy will pave the way for the desired outcome

Competencias adquiridas en investigación y Salud Pública en la especialidad de Enfermería Familiar y Comunitaria en la Comunidad Valenciana / Skills acquired in research and public health in the specialty of family and community nursing in the Valencian Community

Objetivo: Valorar la adquisición de competencias en investigación y Salud Pública de los especialistas en Enfermería Familiar y Comunitaria. Método: Estudio descriptivo y analítico sobre población de enfermeros especialistas asociados a la Sociedad Enfermera Valenciana de Atención Primaria. Medido con cuestionario anónimo y autoadministrado sobre actividades implementadas y tiempo de rotación en el periodo de formación. Cuestionario realizado y revisado en base al programa formativo de la especialidad. Resultados: Responden 16 de los 41 especialistas. Existe representación de las cuatro promociones que han acabado su formación y siete unidades docentes nacionales. Los resultados muestran alta heterogeneidad en las actividades desarrolladas en la formación. La estancia media en Salud Pública es de 7,07 semanas, con rango de 0 a 16 semanas. El número de sesiones educativas medio es de 2,69 en los dos años. La media de proyectos de investigación es de 1,19. Conclusión: El resultado muestra un proceso de especialización con carencias formativas en las competencias de investigación y Salud Pública que podrían subsanarse. Algunos profesionales afirman que acaban la especialización sin desarrollar actividades de investigación y con rotatorios que no alcanzan los mínimos propuestos. No se observa proceso de mejora en las cuatro promociones estudiadas (AU)

Objective: To evaluate the acquisition of skills in research and public health specialists in family and community nursing. Method: Descriptive and analytical study on a population of specialist nurse members of with the Valencian Primary Nurse Society. Measured with anonymous self-administered questionnaire on activities implemented and turnaround time in the training period. The questionnaire was conducted and reviewed based on the training programme of the specialty. Results: Sixteen of the 41 specialists responded. The four year groups of nurses who had finished their training were represented as well as seven national teaching units. The results show high heterogeneity in the activities developed in the training. The average rotation in public health is 7.07 weeks, with range of 0 to 16 weeks. The mean number of educational sessions is 2.69 in the two years. The average number of research projects is 1.19. Conclusion: The result shows a specialisation process with training gaps in the skills of research and public health that could be remedied. Some practitioners claim that they finish their specialisation without undertaking research activities or completing the minimum proposed shifts. There is no process of improvement in the four year groups studied (AU)

A vivência da familia no cuidado domiciliar à criança com necessidades especiais de saúde / Family experience in household care for children with special needs of health / La vivencia de la familia en el cuidado domiciliar al niño con necesidades especiales de salud

RESUMO Objetivo: Analisar a vivência da família no cuidado domiciliar às crianças com necessidades especiais de saúde (CRIANES). Material e método: Trata-se de um estudo qualitativo, onde foram analisados 134 prontuários em uma instituição filantrópica em um município de Minas Gerais e realizadas dez entrevistas semi-estruturadas com famílias de CRIANES. A análise dos dados foi realizada por meio da análise de conteúdo proposta por Bar-din. Resultados: Os resultados sinalizam a complexidade presente nos cuidados realizados com a CRIANES e foi possível identificar uma sobrecarga do cuidador principal. Conclusão: Evidencia-se a importância da efetivação de políticas públicas para esse grupo infantil e a necessidade de uma consolidação da rede social e de apoio para favorecer o acesso e utilização oportuna aos serviços e para melhorias na qualidade de vida das CRIANES e suas famílias.

ABSTRACT Objective: The objective of the research is to analyze the family's experience with home care for children with special health needs (CRIANES). Method: This is a qualitative study, which analyzed 134 records at a philan thropic institution in a district of Minas Gerais and ten semi-structured interviews were performed to fam ilies of children with special health needs. Data analysis was performed using the content analysis proposed by Bardin. Results: The results indicate the complexity underlying the care provided to children with special health needs and it was also possible to identify an overload that falls on the primary caregiver. Conclusion: The importance of effective implementation of public policies for this group of children is evident and the need for the strengthening of the social and support networks to facilitate access and timely use of the services in order to improve the quality of life of the children with special health needs and their families.

RESUMEN Objetivo: Analizar la vivencia de la familia en el cuidado domiciliar a los niños con necesidades especiales de salud. Método: Se trata de un estudio cualitativo, donde se analizaron 134 registros en una institución filan trópica en un municipio de Minas Gerais y se realizaron diez entrevistas con familias de niños con necesidades especiales de salud. El análisis de los datos fue realizado por medio del análisis de contenido propuesto por Bardin. Resultados: Los resultados señalan la complejidad presente en los cuidados realizados con los niños con necesidades especiales de salud y fue posible identificar una sobrecarga del cuidador principal. Conclusión: Se evidencia la importancia de la aplicación efectiva de políticas públicas para ese grupo de niños y la necesidad de una consolidación de la red social y de apoyo para favorecer el acceso y utilización oportuna de los servicios y para mejoras en la calidad de vida de los niños y sus familias.