[Family guidance for the elderly: a family group care at home]. / La guidance familiale en psychiatrie de la personne âgée : un soin groupal familial à domicile.

The Elderly Psychiatry Family Guidance Centre, set up in 2009 in the French Rhône department, is a hospital-based team working at the request of professionals in the network. It is aimed at families in which a member over the age of 65 is experiencing a loss of autonomy that is beyond the family's resources. Combining psychodynamic and systemic tools, this group treatment focuses on psychological aspects and elements of everyday reality. It encourages family communication in order to restore balance. It activates specific levers: intervention during the crisis, modularity of the framework, work on the environment and the network. It offers six renewable sessions, at home, and summaries with partners. The system has temporal and geographical limitations. This experiment shows that it is possible to offer family care that can be linked to individual care, can be identified in the professional network, and is accessible to families who are not initially interested. This finding opens up the possibility of spreading the scheme.

Digital ethical reflection in home nursing care: Nurse leaders' and nurses' experiences.

BACKGROUND: Nurse leaders increasingly need effective tools that facilitate the prioritisation of ethics and help staff navigate ethical challenges and prevent moral distress. This study examined experiences with a new digital tool for ethical reflection, tailored to improve the capabilities of both leaders and employees in the context of municipal long-term care. AIM: The aim was to explore the experiences of nurse leaders and nurses in using Digital Ethical Reflection as a tool for ethics work in home nursing care. RESEARCH DESIGN: The study employed a qualitative design, incorporating individual and focus group interviews for data collection. Qualitative content analysis was used to analyse the data. PARTICIPANTS AND RESEARCH CONTEXT: The participants comprised six nurse leaders and 13 nurses, representing six home care zones across two Norwegian municipalities. ETHICAL CONSIDERATIONS: The study involved informed, voluntary participation and was approved by the Norwegian Agency for Shared Services in Education and Research. FINDINGS: Four themes were developed: a constant walk on the edge between engagement and discouragement and lost in translation describe the process, while tuning in to the ethical dimension and navigating ethical uncertainties illuminate the experienced significance of Digital Ethical Reflection. CONCLUSION: Success with Digital Ethical Reflection in home nursing care depends on clear leadership planning, nurses' understanding of the tool's purpose, and active use of digital registrations. Support from ethically interested nurses enhances overall engagement. Further research is needed to explore the potential of Digital Ethical Reflection as an additional tool in long-term care ethics work.

Experiencias de las enfermeras en primera línea contagiadas con COVID-19 que recibieron atención domiciliaria / Experiências de enfermeiros da linha de frente infectados com COVID-19 que receberam atendimento domiciliar / Experiences of frontline nurses infected with COVID-19 who received home care

Introducción: Las enfermeras han brindado cuidados a lospacientes con COVID-19, y muchas tuvieron que lidiar coneste virus al ser infectadas.Objetivo: Describir las experiencias de las enfermeras enprimera línea contagiadas con COVID-19 que recibieronatención domiciliaria.Método: Investigación cualitativa descriptiva, el tamaño dela muestra fue con 12 enfermeras infectadas con COVID-19que recibieron tratamiento domiciliario en Chiclayo, Perú. Elmuestreo fue por la técnica de bola de nieve. Para recolectarlos datos se utilizó la entrevista semiestructurada a travésde los medios virtuales previo consentimiento informado.Resultados: Surgieron tres categorías: a) Incertidumbre antemodo de contagio, medios de diagnóstico, sintomatología yevolución por la COVID-19, b) Cuidados recuperativos enel hogar: tratamiento médico, uso de medicina tradicional ymedidas de bioseguridad, y c) Impacto en la vida familiar,laboral, social, emocional y espiritual al sufrir de la COVID-19.Conclusiones: Las enfermeras presentaron síntomas leves dela COVID-19 y se recuperaron en su domicilio, cumplieroncon el tratamiento médico, algunas usaron remedios caseros.Practicaron estrictamente las medidas de bioseguridad paraevitar que su familia se contagie. Utilizaron la tecnologíadigital y reforzaron su fe para afrontar el impacto familiar,emocional y social.(AU)

Introduction: Nurses have provided care to patients with COVID-19,and many have had to deal with this virus when infected.Objective: To describe the experiences of frontline nursesinfected with COVID-19 who received home care.Method: Descriptive qualitative research, the sample sizewas 12 nurses infected with COVID-19 who received hometreatment in Chiclayo, Peru. Sampling was by snowballtechnique. To collect the data, the semi-structured interviewwas used through virtual media with prior informed consent.Results: Three categories emerged: a) Uncertainty regardingthe mode of transmission, means of diagnosis, symptomatologyand evolution due to COVID-19, b) Recuperative care athome: medical treatment, use of traditional medicine andbiosafety measures, and c) Impact on the family, work, social,emotional and spiritual life when suffering from COVID-19.Conclusions: The nurses presented mild symptoms ofCOVID-19 and recovered at home, complied with medicaltreatment, some used home remedies. They strictly practicedbiosecurity measures to prevent their family from gettinginfected. They used digital technology and strengthened theirfaith to cope with the family, emotional and social impact.(AU)

Introdução: Enfermeiras têm prestado atendimento a pacientescom COVID-19, e muitos tiveram que lidar com esse vírusquando infectados.Objetivo: Descrever as experiências de enfermeiros dalinha de frente infectados com COVID-19 que receberamatendimento domiciliar.Método: Emergiram três categorias: a) Incerteza quanto aomodo de contágio, meios de diagnóstico, sintomatologiae evolução da COVID-19, b) Cuidados de recuperação nodomicílio: tratamento médico, uso da medicina tradicional emedidas de biossegurança, e c) Impacto na saúde vida familiar,laboral, social, emocional e espiritual ao sofrer de COVID-19. Resultados: a) Participação do pessoal de saúde na atenção domiciliar: Consulta médica,administração de medicamentos e educação em saúde, b) Participação da família na atençãodomiciliar: Satisfação das necessidades básicas, apoio emocional e espiritual, c) Anedotas familiaressobre oferta de oxigênio, cuidados com oxigenoterapia e pós -Terapia respiratória COVID-19, d)Controvérsias para aplicação de protocolos de biossegurança durante o atendimento domiciliar.Conclusões: As enfermeiras apresentaram sintomas leves de COVID-19 e se recuperaram em casa,cumpriram tratamento médico, alguns usaram remédios caseiros. Eles praticavam rigorosamenteas medidas de biossegurança para evitar que sua família fosse infectada. Eles usaram a tecnologiadigital e fortaleceram sua fé para lidar com o impacto familiar, emocional e social.(AU)

Nursing care in patients with dependency-related skin injuries in the community: a scoping review.

PURPOSE: Dependency-related skin injuries (DRSI) occur in people who need a high level of support to carry out day-to-day activities. Owing to the ageing population, the number of people at risk of DRSI is increasing. Most wound care is performed by nurses in the community. This scoping review aimed to identify the extent of literature on nursing care for patients with or at risk of developing DRSI living in their own home. MATERIALS AND METHODS: A scoping review was conducted. RESULTS: A total of 28 studies met the inclusion criteria and four main themes emerged: features of the community setting; wound types, causes and management; prevention strategies around aetiology and holistic care; care management and local wound care. CONCLUSION: Although most wounds occur in and are treated in the community, there is a paucity of research on wounds in this setting. The care of patients with DRSI in the community is complex and prevention according to the individual aetiology of each lesion is the key factor in wound care.

Adapting to home care in Norway: A longitudinal case study of older Adults' experiences.

This study aimed to describe how older adults with complex health problems manage their everyday lives in their own homes and how they interact with given home care. In this multiple-case study, a total of 14 individual interviews were conducted with five older adults over the course of one year. Deductive and inductive content analyses were performed. Three descriptive categories were each identified in the deductive ('home care as interpersonal continuity', 'home care as information continuity' and 'home care as management continuity') and inductive analyses ('Lack of social contact with carers', 'Desire to be heard throughout the care process' and 'Carers are short on time'). Quality home care services are difficult to realize if interpersonal interaction is subordinated to effective task-solving.

[People in need of care at home: the relevance of incontinence and falls]. / Inkontinenz und Stürze erschweren die Pflege zu Hause.

The geriatric syndromes of incontinence and falls not only affect patients living in care homes, but increasingly also patients in their own homes. This particularly affects patients with cognitive impairments. A high nursing home admission age in an ageing population means that these geriatric syndromes are part of everyday care in the home. It is recommended to educate patients in particular about ways to prevent falls and incontinence - promoting mobility and exercise play a key role here.

The Clinical and Cost-Effectiveness of an Individualized Nutritional CAre (INCA) Bundle versus Standard Care for Adults with Pressure Injuries Receiving Home Nursing Services: A Protocol for a Cluster Randomized and Pragmatic Clinical Trial with an Economic Evaluation.

BACKGROUND: Pressure injuries (PIs) represent a significant healthcare challenge in Singapore among the aging population. These injuries contribute to increased morbidity, mortality, and healthcare expenditure. Existing research predominantly explores single-component interventions in hospital environments, often yielding limited success. The INCA Trial aims to address this research gap by conducting a comprehensive, cluster randomized controlled trial that integrates education, individualized nutritional support, and community nursing care. This study is designed to evaluate clinical and cost-effectiveness outcomes, focusing on PI wound area reduction and incremental costs associated with the intervention. METHODS: The INCA Trial employs a two-group, non-blinded, cluster randomized, and pragmatic clinical trial design, recruiting 380 adult individuals (age ≥ 21 years) living in the community with stage II, III, IV, and unstageable PI(s) who are receiving home nursing service in Singapore. Cluster randomization is stratified by postal codes to minimize treatment contamination. The intervention arm will receive an individualized nutrition and nursing care bundle (dietary education with nutritional supplementation), while the control arm will receive standard care. The 90-day intervention will be followed by outcome assessments extending over one year. Primary outcomes include changes in PI wound area and the proportion of participants achieving a ≥40% area reduction. Secondary outcomes include health-related quality of life (HRQOL), nutritional status, and hospitalization rates. Data analysis will be conducted on an intention-to-treat (ITT) basis, supplemented by interim analyses for efficacy and futility and pre-specified sensitivity and subgroup analyses. The primary outcome for the cost-effectiveness analysis will be based on the change to total costs compared to the change to health benefits, as measured by quality-adjusted life years (QALYs). DISCUSSION: The INCA Trial serves as a pioneering effort in its approach to PI management in community settings. This study uniquely emphasizes both clinical and economic outcomes and melds education, intensive dietetic support, and community nursing care for a holistic approach to enhancing PI management.

The Impact of Continuous Use of Home Health Care Resources on End-of-Life Care at Home in Older Patients with Cancer: A Retrospective Cohort Study in Fukuoka, Japan.

This study aimed at examining the effect of continued use of home health care resources on end-of-life care at home in older patients with cancer. This retrospective cohort study was conducted using medical and long-term care claims data of 6435 older patients with cancer who died between April 2016 and March 2019 in Fukuoka Prefecture. The main explanatory variables were enhanced home care support clinics and hospitals (HCSCs), enhanced HCSCs with beds, conventional HCSCs, other HCSCs, and home visit nursing care. The covariates were sex, age, required level of care, and the Charlson Comorbidity Index. A logistic regression model was used. The results of the multilevel logistic regression analysis showed that the following were significantly associated with end-of-life care at home: use of enhanced HCSCs with beds (odds ratio, OR: 8.66; 95% confidence interval, CI: [4.31-17.40]), conventional HCSCs (OR: 5.78; 95% CI: [1.86-17.94]), enhanced HCSCs (OR: 4.44; 95% CI: [1.47-13.42]), home-visit nursing care (OR: 1.86; 95% CI: [1.42-2.44]), and a severe need for care (OR: 3.89; 95% CI: [2.92-5.18]). The results suggest that the continued use of home health care resources in older patients with cancer who require out-of-hospital care may lead to increased end-of-life care at home. Particularly, use of enhanced HCSCs with beds is most strongly associated with end-of-life care at home.

Cuidado domiciliar da criança em uso de traqueostomia: perspectiva dos cuidadores no contexto amazônico / Home care for children using a tracheostomy: caregivers' perspective in the amazon context / Atención domiciliaria a niños con traqueostomía: la perspectiva de los cuidadores en el contexto amazónico

RESUMO Objetivo: descrever a percepção dos cuidadores de crianças traqueostomizadas sobre os desafios no processo de alta para o domicílio no contexto amazônico. Método: estudo descritivo, qualitativo, realizado com 16 cuidadores de crianças traqueostomizadas que vivenciaram a desospitalização, em um Hospital Infantil de Rio Branco - Acre - Brasil. Amostragem definida por saturação, dados coletados com roteiro semiestruturado de agosto a dezembro de 2021, submetidos à Análise de Conteúdo de Bardin. Resultados: a análise resultou em quatro categorias: (1) sentimentos vivenciados com o uso do dispositivo traqueal; (2) cuidados rotineiros com a traqueostomia que os cuidadores julgam importantes; (3) dúvidas e relatos sobre a aspiração traqueal; e (4) condutas diante de intercorrências nas crianças em uso de traqueostomia. Considerações finais: o temor em aprender a técnica de aspiração traqueal e da alta hospitalar reforça a necessidade de educação precoce e contínua dos cuidadores, com foco no atendimento de rotina e de emergência para as crianças traqueostomizadas.

ABSTRACT Objective: To describe caregivers' perception of tracheostomized children about the challenges in discharge to their homes in the Amazonian context. Method: A descriptive, qualitative study was conducted with 16 caregivers of tracheostomized children who experienced dehospitalization in a children's hospital in Rio Branco - Acre - Brazil. Saturation-defined sampling, data collected with a semi-structured script from August to December 2021, submitted to Bardin Content Analysis. Results: the analysis resulted in four categories: (1) feelings experienced with the use of the tracheal device; (2) routine tracheostomy care that caregivers consider important; (3) questions and reports about tracheal aspiration; and (4) conduct in the face of complications in children using tracheostomy. Final remarks: the fear of learning the tracheal aspiration technique and of being discharged from the hospital reinforces the need for early and continuous education for caregivers, focusing on routine and emergency care for tracheostomized children.

RESUMEN Objetivo: describir la percepción de los cuidadores de niños traqueostomizados sobre los desafíos del alta domiciliaria en el contexto amazónico. Material y método: estudio descriptivo, cualitativo, realizado con 16 cuidadores de niños traqueostomizados que pasaron por la experiencia de des-hospitalización en un Hospital Infantil de Rio Branco - Acre - Brasil. Muestreo definido por saturación, datos recogidos mediante guion semiestructurado de agosto a diciembre de 2021, sometidos al Análisis de Contenido de Bardin. Resultados: el análisis dio lugar a cuatro categorías: (1) sentimientos experimentados con el uso del dispositivo traqueal; (2) cuidados rutinarios con la traqueostomía que los cuidadores consideran importantes; (3) dudas e informes sobre la aspiración traqueal; y (4) comportamiento en caso de complicaciones en niños que utilizan una traqueostomía. Consideraciones finales: el miedo a aprender la técnica de aspiración traqueal y a recibir el alta hospitalaria refuerza la necesidad de una formación precoz y continuada de los cuidadores, centrada en los cuidados rutinarios y de urgencia de los niños traqueostomizados.

Quality and Safety of Proximity Care Centered on the Person and Their Domiciliation: Systematic Literature Review.

The quality and safety of health care are a priority for health organizations and social institutions to progressively provide people with a higher level of health and well-being. It is in the development of this path that home care currently represents an area of gradual investment and where health care services and the scientific community have shown interest in building circuits and instruments that can respond to needs. The purpose of this article is to identify areas and criteria for quality and safety in home care. The method used was a systematic review registered in PROSPERO (CRD42022380989). The search was systematically carried out in CINAHL Plus with Full Text, MEDLINE with Full Text and Psychology and Behavioral Sciences Collection, using the following criteria: articles published in Portuguese and English, from January 2017 to November 2022. The results of the analysis of the articles showed areas of quality and safety in home care with their respective dimensions and operational criteria. We concluded that there are three areas: the intervention with the patient, with proximity and patient-centered care, which integrates the individual care plan and the proximity of professionals to the patient and family; the intervention of care and service management, with care management and clinical governance that includes the integrated model of health care, goal management, and context management; and the intervention related to training and professional development, where we have the skills and training of professionals.

Condiciones de trabajo y el cuidado de sí en profesionales de enfermería en la atención domiciliaria de adultos mayores dependientes / Condições de trabalho e autocuidado dos profissionais de enfermagem na assistência domiciliar a idosos dependentes / Working conditions and self-care of nursing professionals in home care of dependent older adults

Introducción: La atención a domicilio de adultos mayores dependientes es una tarea compleja que requiere de profesionales de enfermería altamente capacitados. Sin embargo, las condiciones laborales adversas y la falta de atención al cuidado de sí mismo ponen en riesgo su salud y bienestar, así como la calidad del cuidado que brindan. Objetivo: Describir las condiciones de trabajo y el cuidado de sí en profesionales de enfermería en la atención domiciliaria de adultos mayores dependientes. Metodología: Investigación cualitativa de diseño narrativo utilizando la teoría del cuidado de sí de Michel Foucault. Muestreo por bola de nieve. Criterios de selección: ser enfermero(a) de atención domiciliaria, tener bajo su cuidado a adultos mayores dependientes y firmar el consentimiento informado. Recolección de datos mediante entrevistas semiestructuradas, grabadas y transcritas textualmente para ser analizadas con ayuda del software ATLAS.ti. Participantes: 9 profesionales de enfermería domiciliaria independiente. Resultados: Emergieron 2 categorías: 1) La familia en el cuidado y 2) El lado doloroso del cuidado. Conclusiones: Además de las habilidades de comunicación eficaz para solicitar las adaptaciones arquitectónicas de la vivienda y la colaboración de los familiares, se hace evidente que cuando se usan las tecnologías de la teoría de Michel Foucault, se promueve el cuidado de sí de la enfermera. Discusión: La capacidad para tomar conciencia sumado al pensamiento crítico, son necesarios para tener el poder y autonomía sobre las decisiones que se llevan a cabo en el trabajo, reduciendo riesgos e injusticias en el ámbito que se encuentre y promover el cuidado de sí.

Introduction: Home care of dependent older adults is a complex task that requires highly trained nursing professionals. However, adverse working conditions and lack of attention to self-care jeopardize their health and well-being, as well as the quality of care they provide. Objective: To describe the working conditions and self-care of nursing professionals in the home care of dependent older adults. Methodology: Qualitative research of narrative design using Michel Foucault's theory of self-care. Snowball sampling. Selection criteria: to be a home care nurse, to have dependent older adults under his/her care and to sign the informed consent form. Data collection through semi-structured interviews, recorded and transcribed verbatim for analysis using ATLAS.ti software. Participants: 9 independent home nursing professionals. Results: 2 categories emerged: 1) The family in caregiving and 2) The painful side of caregiving. Conclusions: In addition to effective communication skills to request architectural adaptations of the home and the collaboration of family members, it is evident that when the technologies of Michel Foucault's theory are used, the nurse's self-care is promoted. Discussion: The ability to be aware and critical thinking are necessary to have power and autonomy over the decisions that are carried out at work, reducing risks and injustices in the field and promoting self-care.

Introdução: O atendimento domiciliar de idosos dependentes é uma tarefa complexa que exige profissionais de enfermagem altamente treinados. No entanto, as condições de trabalho adversas e a falta de atenção ao autocuidado prejudicam sua saúde e bem-estar, bem como a qualidade do atendimento que prestam. Objetivo: descrever as condições de trabalho e o autocuidado dos profissionais de enfermagem na assistência domiciliar a idosos dependentes. Metodologia: Pesquisa qualitativa com um projeto narrativo usando a teoria do autocuidado de Michel Foucault. Amostragem em bola de neve. Critérios de seleção: ser enfermeiro de atendimento domiciliar, estar cuidando de idosos dependentes e assinar o termo de consentimento livre e esclarecido. Coleta de dados por meio de entrevistas semiestruturadas, gravadas e transcritas literalmente para análise usando o software ATLAS.ti. Participantes: 9 profissionais independentes de enfermagem domiciliar. Resultados: Surgiram duas categorias: 1) A família no cuidado e 2) O lado doloroso do cuidado. Conclusões: Além de habilidades de comunicação eficazes para solicitar adaptações arquitetônicas na residência e a colaboração dos familiares, fica evidente que, quando as tecnologias da teoria de Michel Foucault são utilizadas, o autocuidado do enfermeiro é promovido. Discussão: A capacidade de conscientização e o pensamento crítico são necessários para ter poder e autonomia sobre as decisões tomadas no trabalho, reduzindo os riscos e as injustiças no campo e promovendo o autocuidado.

Contributing factors involved in the safety of elderly people with chronic illness in home healthcare: a qualitative study.

INTRODUCTION: Patients receiving home care are often elderly people with chronic illnesses that increasingly experience patient safety barriers due to special care needs. OBJECTIVE: The present study was conducted to determine the factors involved in the safety of elderly patients with chronic illnesses receiving home care. METHODS: A qualitative study with a conventional content analysis method was conducted in home care agencies of Tehran, Iran from August 2020 to July 2022. For data generation, semistructured interviews were conducted with 11 nurses, 2 nurse assistants, 1 home care inspector (an expert working at the deputy of treatment) and 3 family caregivers. Moreover, four observational sessions were also held. Data analysis was done using the five-step Graneheim and Lundman method. RESULTS: According to the results, the facilitators of the safety of the elderly patients with chronic illnesses included the family's participation, nurse's competence, efficiency of the home care agency management and patient's participation in patient safety. The barriers to patient safety included problems created by the family, nurse's incompetence, inefficiency of the home care agency, patient's prevention of patient safety, home care setting limitations and health system limitations. CONCLUSION: The majority of the factors involved in the safety of elderly patients with chronic diseases receiving home care had dual roles and could serve as a double-edged sword to guarantee or hinder patient safety. Identification of the facilitators and barriers can assist nurses and the healthcare system in planning and implementing patient safety improvement programmes for elderly patients with chronic illnesses.

Caring for a home-dwelling older parent with mental health problems: a narrative analysis of family caregivers' experiences.

PURPOSE: To gain knowledge regarding family caregivers of home-dwelling older adults with mental health problems and the meaning-making of the caregiver's role. DESIGN: An explorative qualitative study involving narrative analysis. METHODS: Semi-structured individual interviews were conducted among eight adult children. Interview data were analysed using narrative analysis. The reporting adhered to consolidated criteria for reporting qualitative studies. RESULTS: Each participant narrated unique and nuanced stories of the caregiver role, but their stories also revealed prominent themes across participants' experiences and meaning-making. The analysis revealed three themes: family relationships through a long life, a demanding and difficult caregiver role, and reconstructing the caregiver's role by leaving the responsibility to healthcare services. CONCLUSION: Family caregivers experienced the role as purposeful and demanding. Mostly, psychological reactions to behaviour symptoms and duration of caregiving were considered difficult and demanding. They described that they lacked knowledge of the illness and how to perform care. Sharing care responsibility with healthcare services had the potential to ease family caregivers' burden. However, based on a long life as caregivers, some experienced difficulties when reconstructing and adjusting the role to their life situation.

Avaliação das Instituições de Longa Permanência para Idosos no Brasil: um panorama das desigualdades regionais / Evaluation of Long-Term Institutions for Older People in Brazil: an overview of regional inequalities

Resumo O objetivo deste artigo é avaliar as Instituições de Longa Permanência para Idosos (ILPI) brasileiras, segundo o Modelo Teórico Multidimensional Integrado de Qualidade e Atendimento (MIQA), e comparar o desempenho alcançado entre as regiões do país. Estudo ecológico descritivo realizado com dados secundários públicos das ILPI participantes do Censo do Sistema Único da Assistência Social de 2018. Uma Matriz de Avaliação foi construída a partir das variáveis do Censo e do Modelo Teórico MIQA. Parâmetros de qualidade foram empregados para classificar o desempenho das instituições para cada indicador em "incipiente", "em desenvolvimento" ou "desejável. O índice de disparidade foi obtido para cada indicador. Foram analisadas 1.665 instituições. Observaram-se diferenças nos percentuais de ILPI com desempenho "desejável" entre as regiões brasileiras, e a necessidade de aprimoramento na maioria das ILPI em relação à proporção de cuidadores de pessoas idosas, a composição da equipe multiprofissional, a acessibilidade e a oferta de ações de promoção de saúde. Verificou-se a necessidade de apoio governamental para a supressão dos critérios de diferenciações excludentes e para a expansão dos serviços para superar as superlotações.

Abstract This article aims to evaluate the Brazilian Long-Term Institutions for Older People (LTIE), according to the Integrated Multidimensional Theoretical Model of Quality and Service (MIQA), and compare the performance achieved between the regions of the country. Descriptive ecological study carried out with public secondary data from the LTIE participating in the 2018 Census of the Unified Social Assistance System. An Evaluation Matrix was constructed from the Census variables and the MIQA Theoretical Model. Quality parameters were used to classify the institutions' performance for each indicator as "incipient", "developing" or "desirable". The disparity index was obtained for each indicator. 1,665 institutions were analyzed. Differences were observed in the percentages of LTIE with "desirable" performance between Brazilian regions, and the need for improvement in most LTIE in relation to the proportion of caregivers of older people, the composition of the multidisciplinary team, accessibility and supply of health promotion actions. There was a need for government support for the suppression of exclusionary differentiation criteria and for the expansion of services to overcome overcrowding.

Teoria fundamentada sobre o tornar-se cuidador de um familiar em cuidado paliativo pela atenção domiciliar / Grounded theory about becoming a caregiver of a family member under palliative care at home

Introdução: O Cuidado Paliativo domiciliar, aliado ao trabalho multiprofissional e à presença de um cuidador familiar, possibilita a produção de autonomia e de alternativas criativas no cuidado. Objetivo: Compreender as condições relacionadas ao tornar-se cuidador familiar principal de um membro da família que recebe cuidados paliativos por serviço de Atenção Domiciliar. Metodologia: Pesquisa qualitativa, explicativa, utilizando a perspectiva metodológica de Strauss e Corbin da Teoria Fundamentada nos Dados. Realizamos entrevistas em profundidade com 18 participantes, sendo nove cuidadores familiares e nove profissionais de enfermagem de um Serviço de Atenção Domiciliar e as analisamos pelas codificações aberta, axial e seletiva. Posteriormente, apresentamos as categorias construídas em uma roda de conversa com 15 cuidadores familiares e nove profissionais para a validação teórica. Resultados: O processo de tornar-se cuidador familiar relaciona-se a três subcategorias analíticas: ''Assumindo o cuidado domiciliar do familiar dependente''; ''(Des) conhecendo a condição de saúde do familiar e o significado de cuidados paliativos''e ''Vivenciando os cuidados paliativos e lidando com a possibilidade de morte''. Destaca-se que os familiares tornaram-se cuidadores pela imperativa necessidade do cuidado de um parente. A compreensão sobre o significado de cuidado paliativo foi se instituindo pela vivência deste familiar e pelo lidar diário com a condição e possibilidades de morte, mediada pela equipe de Atenção Domiciliar, destacando-se os profissionais de enfermagem. Os profissionais atuantes no serviço mostraram dificuldades para abordarem o tema da morte e de cuidado paliativo com paciente e cuidador. Conclusão: Tornar-se cuidador familiar mostra-se um processo complexo, permeado por diversas interações entre pacientes, cuidadores familiares e profissionais da saúde. Identificou-se que as dificuldades nesse processo podem ser amenizadas por meio de estratégias adotadas pelos profissionais para ampliar a comunicação e o apoio frente às singularidades das famílias e, também, através da implementação de políticas públicas que favoreçam o cuidador.

Introducción: El cuidado paliativo en el hogar, aliado al trabajo multiprofesional y a la presencia de una persona familiar cuidadora, posibilita la obtención de autonomía y de alternativas creativas en el cuidado. Objetivo: Comprender las condiciones relacionadas al convertirse en la persona cuidadora principal de un miembro de la familia que recibe cuidados paliativos en el hogar. Método: Investigación cualitativa, utilizando la perspectiva metodológica de Strauss y Corbin de la teoría fundamentada en los datos. Se realizaron entrevistas exhaustivas a 18 participantes, 9 familiares cuidadores y 9 profesionales de enfermería de un Servicio de Atención en el Hogar. Estas entrevistas fueron analizadas por codificación abierta, axial y selectiva. Posteriormente, se presentan las categorías identificadas en una rueda de conversación con 15 familiares cuidadores y 9 profesionales para su validación teórica. Resultados: El proceso de convertirse en una persona cuidadora familiar está relacionado a tres subcategorías analíticas: ''Comprometiéndose con la asistencia en el hogar de la persona familiar dependiente.''; ''(Des) conociendo la condición de salud de la persona familiar y el significado de los cuidados paliativos''y ''Vivenciando los cuidados paliativos y lidiando con la posibilidad de muerte''. Se destaca que familiares se convierten en cuidadores por la imperativa necesidad de cuidados de un pariente. La comprensión del significado de los cuidados paliativos fue instituida por la experiencia de esta persona integrante de la familia y por el tratamiento diario de la condición y posibilidades de muerte, mediada por el equipo de asistencia en el hogar, especialmente las personas profesionales de enfermería. Las personas profesionales de enfermería que actúan en el servicio mostraron dificultades para abordar el tema de la muerte y los cuidados paliativos con pacientes y cuidador. Conclusión: Convertirse en persona cuidadora familiar es un proceso complejo, permeado por diferentes interacciones entre pacientes, cuidadores familiares y profesionales de la salud. Se identificó que las dificultades en ese proceso pueden ser paliadas a través de estrategias adoptadas por las personas profesionales para ampliar la comunicación y el apoyo frente a las singularidades de las familias y, también, a través de la implementación de políticas públicas que favorezcan a quien realiza el cuidado.

Introduction: Palliative care at home, combined with multiprofessional work and the presence of a family caregiver, enables the achievement of autonomy and creative alternatives in caregiving. Objective: To understand the conditions related to becoming the main caregiver of a family member receiving palliative care at home. Method: Qualitative research, using Strauss and Corbin's methodological perspective of Grounded Data Theory. In-depth interviews were conducted, with 18 participants: nine family caregivers and nine nursing professionals from a Home Care Service, and were analyzed them by open, axial and selective coding. Subsequently, the categories identified in a conversation with fifteen family caregivers and nine professionals are presented for theoretical validation. Results: The process of becoming a family caregiver is related to three analytical subcategories: "Engaging in the home care of the dependent family member"; " (Un) knowing the health condition of the family member and the meaning of palliative care," and "Experiencing palliative care and coping with the possibility of death". It is emphasized that family members became caregivers due to the imperative need for care of a relative. The understanding of the meaning of palliative care was instituted by the experience of this family member, by the daily treatment of the condition, and the possibilities of death, mediated by the Home Care team, especially the nursing professionals. The professionals working in the service showed difficulties in addressing the theme of death and palliative care with patients and caregivers. Conclusion: Becoming a family caregiver is a complex process, permeated by different interactions between patients, family caregivers and health professionals. It was identified that the difficulties in this process can be mitigated through strategies adopted by professionals to expand the communication and the support for the specific needs of families and, also, through the implementation of public policies that favor the caregiver.

Necesidades de atención domiciliaria en el paciente paliativo pediátrico percibidas por los profesionales: Una teoría fundamentada / Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

Objetivo: Explorar los elementos que intervienen en el proceso de los cuidados paliativos pediátricos domiciliarios en el contexto de España según la opinión de los profesionales. Método: Estudio cualitativo sustentado en la Teoría Fundamentada, ajustado a normas COREQ, mediante muestreo teórico con entrevistas en profundidad (junio 2021 - febrero 2022) a pediatras, enfermeras pediátricas y trabajadores sociales de unidades de cuidados paliativos infantiles en España, excluyendo profesionales con experiencia inferior a 1 año. Las entrevistas han sido grabadas y transcritas literalmente para su codificación y categorización mediante un proceso comparativo constante a través de coocurrencias de códigos hasta la saturación de datos usando Atlas-Ti®. Se ha garantizado el anonimato de los informantes empleando pseudónimos tras la aprobación por el Comité de Ética de la Investigación del Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Islas Canarias) con número de registro 2021-403-1. Resultados: Se realizaron 18 entrevistas que expusieron 990 citas agrupadas en 22 categorías de análisis y estructuradas en cuatro grupos temáticos (cuidados, entorno, paciente y familia y profesionales). Los hallazgos mostraron una visión holística que enfatiza la necesidad de organizar e integrar los factores que intervienen en el abordaje domiciliario a los cuidados paliativos domiciliarios en pediatría. Conclusiones: En nuestro contexto, el entorno domiciliario reúne unas condiciones apropiadas para desarrollar los cuidados paliativos pediátricos. Las categorías de análisis identificadas establecen un punto de partida para seguir profundizando en el abordaje desde las esferas temáticas implicadas: los cuidados, el entorno, el paciente y la familia y los profesionales.(AU)

Objective: To explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals. Method: Qualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical sampling with in-depth interviews (June 2021 - February 2022) with paediatricians, paediatric nurses and social workers from paediatric palliative care units in Spain, excluding professionals with less than 1 year's experience. Interviews were recorded and transcribed literally for coding and categorisation through a constant comparative process of code co-occurrence until data saturation using Atlas-Ti®. The anonymity of the informants has been guaranteed by using pseudonyms after approval by the Research Ethics Committee of the Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Canary Islands) with registration number 2021-403-1. Results: 18 interviews were conducted and 990 quotes were grouped into 22 categories of analysis and structured into four thematic groups (care, environment, patient and family, and professionals). The findings showed a holistic view emphasising the need to organise and integrate the factors involved in the home-based approach to paediatric palliative home care. Conclusions: In our context, the home environment meets appropriate conditions for the development of paediatric palliative care. The categories of analysis identified establish a starting point for further deepening the approach from the thematic areas involved: care, the environment, the patient and family, and professionals.(AU)

Registered nurses' exposure to high stress of conscience in long-term care.

BACKGROUND: In long-term care, registered nurses and other care providers often experience tensions between ideals and realities in the delivery of services, which can result in stress of conscience. Burnout, low quality of care and a tendency to leave the profession are perceived as consequences. OBJECTIVES: This study aimed to identify the socio-demographic and work-related factors associated with a high level of stress of conscience, particularly between nursing occupations. RESEARCH DESIGN: A cross-sectional survey was conducted among care providers who worked in Norwegian nursing homes and home care services in the spring of 2021. The sample consisted of 950 registered nurses and 1143 other care providers. Data were collected online using the Stress of Conscience Questionnaire (SCQ). ETHICAL CONSIDERATIONS: Participation was voluntary and based on consent. The study was approved by the Norwegian Center for Research Data. RESULTS: Registered nurses were nearly twice as likely to report high levels of stress of conscience compared to other care providers in long-term care. In addition, being a female, living alone, caring for their own children, working in an institution (versus home based), working >75% time, working shifts, not having scheduled meetings for ethical reflection and working in municipalities with a higher population density were factors associated with a high level of SCQ score. DISCUSSION: Knowledge of factors that increase the risk of high SCQ scores in registered nurses provides opportunities for prevention. Managers in long-term care should pay more attention to how work is distributed between the occupational groups and should facilitate real opportunities for ethical reflection. CONCLUSIONS: The results of this study show that registered nurses have particular exposure to high levels of stress of conscience compared to other care providers in long-term care. Particular attention should be paid to registered nurses working in nursing homes.

Home care needs of paediatric palliative patients perceived by professionals: A grounded theory.

OBJECTIVE: To explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals. METHOD: Qualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical sampling with in-depth interviews (June 2021-February 2022) with paediatricians, paediatric nurses and social workers from paediatric palliative care units in Spain, excluding professionals with less than 1 years' experience. Interviews were recorded and transcribed literally for coding and categorisation through a constant comparative process of code co-occurrence until data saturation using Atlas-Ti®. The anonymity of the informants has been guaranteed by using pseudonyms after approval by the Research Ethics Committee of the Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Canary Islands) with registration number 2021-403-1. RESULTS: 18 interviews were conducted and 990 quotes were grouped into 22 categories of analysis and structured into four thematic groups (care, environment, patient and family, and professionals). The findings showed a holistic view emphasising the need to organise and integrate the factors involved in the home-based approach to paediatric palliative home care. CONCLUSIONS: In our context, the home environment meets appropriate conditions for the development of paediatric palliative care. The categories of analysis identified establish a starting point for further deepening the approach from the thematic areas involved: care, the environment, the patient and family, and professionals.

Longing for normalcy in couple relationships: How chronic illness and care dependency change the relationship of long-married couples.

Introduction: Coping with chronic illness and care dependency in a marital dyad challenges many older couples. In our qualitative research study, we are interested in how long-married spouses in Germany experience their couple relationship while dealing with long-term care and adapting everyday life to the care situation. Methods: We conducted problem-centered interviews with 17 spouses according to the interpretive-reconstructive documentary method. Results: We derived four thematic areas: (1) partner(ship) disappears behind the disease; (2) partners struggle with changing tasks and roles; (3) caring partners mourn the loss of intimacy; and (4) partners strive to rebalance the partnership. Discussion: When chronic illness and care dependency enter couples' lives, the self-image as husband or wife is affected. Primary health care professionals should be sensitive to the specific constellation of care in couple relationships and recognize the significance of this dyadic relationship as living in a satisfying couple relationship is essential for the health and wellbeing of both partners.

Conocimientos de los cuidadores informales acerca de la prevención de lesiones por presión en pacientes domiciliarios dependientes de Tunja, Colombia. Estudio transversal con fase psicométrica / Informal caregivers' knowledge about the prevention of pressure injuries in dependent homebound patients. Cross-sectional study with a psychometric phase / Conhecimento de cuidadores informais sobre a prevenção de lesões por pressão em pacientes dependentes domiciliares em Tunja, Colômbia. Estudo transversal com fase psicométrica

Introducción: Las lesiones de piel asociadas a la dependencia de cuidado, afectan la calidad de vida de los pacientes y tienen repercusiones negativas en los cuidadores informales. Objetivo: Determinar los conocimientos de los cuidadores informales acerca de la prevención de lesiones por presión en pacientes domiciliarios dependientes de Tunja, Colombia. Materiales y métodos: Estudio descriptivo de corte transversal y con fase psicométrica. La validación facial por juicio de expertos del COCU-LCRD 23 valoró la coherencia, relevancia y pertinencia de cada ítem. La aplicación del instrumento se hizo en muestra censal domiciliaria, tras la cual se calculó su confiabilidad. Resultados: La validación facial obtuvo concordancia moderada requiriendo mejoras en redacción de los ítems Kappa de Fleiss: 0,4582 (p=0,000). De los 30 cuidadores, la mayoría eran mujeres (83,3%) con edad promedio de 40 años (DS ±13,39), el 43,3% tienen un índice de conocimiento de 83,33, que incluye aspectos como hidratación, cambios de posición, entre otros. La versión ajustada del cuestionario obtuvo un alfa de Cronbach de 0,6322. Conclusiones: Los cuidadores informales presentan grados de escolaridad bajos, además de desconocimiento y poca experiencia en campo del cuidado preventivo en personas dependiente con riesgo de úlceras por presión.

Introduction: Skin lesions associated with home care affect patient quality of life and have negative effects on informal caregivers. Objective: To determine informal caregivers' knowledge regarding the prevention of pressure injuries in dependent homebound patients in Tunja, Colombia. Materials and methods: Descriptive cross-sectional study with a psychometric phase. Experts from the COCU-LCRD 23 performed facial validation, which assessed coherence, relevance, and pertinence of each item. The application of the instrument was carried out on population samples based on household census, after which its reliability was calculated. Results: Facial validation showed moderate concordance, requiring improvements in the wording of the Kappa de Fleiss items: 0.4582 (p=0.000). Most of caregivers were women (83.3%), with an average age of 40 years (SD±13.39) and 43.3% of them have a knowledge index of 83.33, which includes aspects such as hydration, position changes, among others. The adjusted version of the questionnaire reached a Cronbach's alpha of 0.6322. Conclusions: Informal caregivers have low education levels. Also, they are not knowledgeable and have limited experience regarding preventive care of dependent people at risk of pressure ulcers.

Introdução: As lesões de pele associadas à dependência de cuidados afetam a qualidade de vida dos pacientes e repercutem negativamente nos cuidadores informais. Objetivo: Determinar o conhecimento dos cuidadores informais sobre a prevenção de lesões por pressão em pacientes dependentes domiciliares em Tunja, Colômbia. Materiais e métodos: Estudo transversal descritivo com fase psicométrica. A validação facial por julgamento de especialistas do COCU-LCRD 23 avaliou a coerência, relevância e pertinência de cada item. O instrumento foi aplicado a uma amostra de censo domiciliar, após o que foi calculada sua confiabilidade. Resultados: A validação facial obteve concordância moderada, necessitando de melhorias na redação dos itens - Kappa de Fleiss: 0,4582 (p=0,000). Dos 30 cuidadores, a maioria eram mulheres (83,3%) com média de idade de 40 anos (DS±13,39), 43,3% possuem índice de conhecimento de 83,33, que inclui aspectos como hidratação, mudanças de decúbito, entre outros. A versão ajustada do questionário obteve alfa de Cronbach de 0,6322. Conclusões: Os cuidadores informais apresentam baixa escolaridade, além de desconhecimento e pouca experiência na área de cuidados preventivos em pessoas dependentes com risco de úlcera por pressão.