Comparative Analysis of Quality of Life of Family Caregivers of Patients With Heart Failure and Cancer Who Receive Palliative Care.

BACKGROUND: Quality of life (QoL) is the criterion-standard outcome in palliative care for patients with various illnesses and their family caregivers. There is a need to determine the factors affecting caregivers' QoL in each population and the differences between groups to design differentiated intervention strategies. PURPOSE: The aims of this study were to compare the role adoption, social support, and QoL of family caregivers of patients with heart failure and cancer in palliative care and to examine the determinants of QoL. METHODS: A comparative study was conducted with the family caregivers of patients with cancer (n = 81) and heart failure (n = 80) in palliative care. Quality of life in life-limiting situations, role adoption, and social support questionnaires were also administered. A χ2 test, Student t test, and Mann-Whitney U test were used for between-group comparisons. Multiple linear regression was used to examine the effects of the correlated variables on caregivers' QoL. RESULTS: Caregivers of patients with heart failure had better QoL (P = .006) and lower tangible social support (P = .007) than caregivers of patients with heart failure. No differences were found in caregiver role adoption between the groups. Linear regression indicated that for caregivers of patients with cancer, social support, role adoption, caregiver age, and patient functional status affect caregiver QoL. For caregivers of patients with heart failure, role adoption and patient functional status are predictors of QoL. CONCLUSIONS: Overall, healthcare professionals should focus on improving social support and caregiver role adoption and provide greater attention to the QoL of caregivers of patients with cancer.

From Relational Uncertainty to Interpersonal Sensitivity: A Substantive Grounded Theory for Nursing Education.

AIM: The aim of our study was to understand how nursing students develop interpersonal competencies during a faculty-supervised practicum. BACKGROUND: Researchers have studied the interpersonal competencies of nursing students in a fragmented way. METHOD: A constructivist grounded theory approach was used for the study. RESULTS: Four categories emerged from the data: Coping With Practicum-Related Challenges and Insecurities, Learning to Identify the Interpersonal Dimension of Nursing Care, Pedagogical Influence: Promoting (De)constructive Processes for Learning and Care, and Transforming the Self as a Nurse Through Interpersonal Relationships. A core category, From Relational Uncertainty to Interpersonal Sensitivity: A Transition of the Nursing Self Within Reflective Environments of Practice, also emerged. CONCLUSION: The interpersonal competencies of nursing students develop in reflective environments within practicums because of interactions with patients and under the influence and modeling of the educator. Acknowledging the importance of interactions with the educator and patients within practicums can contribute to promoting more thoughtful follow-up processes from educators.

Seeking an Adjustment from the Unnatural to the Supernatural: The Experience of Losing a Child from Cancer in Colombia.

AIMS: The death of a child with cancer can be devastating for his or her parents. This study sought to understand the way in which the process of parental grief develops after the death of a child with cancer. METHODS: The research used a grounded theory approach, in which 18 participants were enrolled including parents whose child died from cancer 5 months to 5 years before. In-depth interviews were conducted, which were analyzed using constant comparisons until theoretical saturation was reached. RESULTS: Fifteen subcategories were identified and grouped into three categories that explain what the grieving process represents to the parents over time (a) crossing a desert, (b) dying while alive, and (c) coming back to life. From the emerging relationships among the categories, the core category "seeking adjustment from the unnatural to the supernatural" arises. The results show that grief begins from the moment of diagnosis until long after the child's death. For parents, it entails understanding the disruption in the natural course of life, going through indescribable pain, and being spiritually reconnected with their child. CONCLUSIONS: These results enable nurses to design comprehensive interventions that meet the described needs of these parents.

Conspiracy of Silence in Palliative Care: A Concept Analysis.

BACKGROUND AND AIM: With chronic diseases on the rise, there is a growing demand for palliative care. The global landscape of the integration of palliative care into health-care systems is incipient, which leads to a lack of social awareness of this reality and consequently, to communication failures, particularly a conspiracy of silence. The aim of this study was to analyze the concept of conspiracy of silence in palliative care. MATERIALS AND METHODS: Walker and Avant method of concept analysis was used. Review and synthesis of literature supported the analysis process. Forty-seven articles were analyzed. RESULTS: Results showed that the conspiracy of silence in palliative care is a communication failure, typical of limited life expectancy prognosis, and involves patients, their families, and health-care teams. Lack of autonomy, overburden, family malfunctioning and coping, and health-care dehumanization are consequences of the conspiracy of silence in palliative care. CONCLUSIONS: The present study had found that scales to measure this concept as well as interventions that consider important factors in the communication process in palliative care identified in this analysis are needed.

Role adoption, anxiety, depression and loneliness in family caregivers of patients with chronic diseases.

OBJECTIVE: to describe and explore the relationship of loneliness, anxiety and depression with adoption of the caregiver role among individuals caring for people with chronic diseases in Colombia. METHODS: this was an exploratory and cross-sectional study involving 960 primary caregivers of individuals with chronic diseases. We applied the Caregiver Role Adoption Scale, the University of California at Los Angeles Loneliness Scale, and the Anxiety and Depression Scale. Principal component and multiple correspondence analyses were performed for clustering. RESULTS: among the participating caregivers, 40.8% reported experiencing depression, 59% reported anxiety, 54.6% reported moderate to severe loneliness, and 88.6% reported satisfactory adoption of the caregiver role. Caregivers who presented basic or insufficient role adoption levels tended to have higher scores for anxiety, depression and loneliness. CONCLUSION: adoption of the caregiver role is a mediator in the anxiety, depression and loneliness levels among caregivers. Strategies aimed at supporting caregivers should include training for the caregiver role to mitigate the negative impacts of anxiety, depression and loneliness. (1) More than half of the caregivers reported moderate or severe anxiety and loneliness. (2) Caregivers with low role adoption levels presented more anxiety, depression and loneliness. (3) Satisfactory adoption of the caregiver role reduces anxiety, depression and loneliness. (4) Role adoption should be intervened to reduce the impact on caregivers' mental health.

Perceptions of an educational intervention for family caregivers of palliative care patients.

BACKGROUND: Nursing interventions aimed at family caregivers of palliative cancer patients require not only an objective evaluation, but also subjective consideration of their contributions, and a qualitative evaluation that provides an in-depth understanding of these interventions. AIMS: This study aimed to explore the perceptions that family caregivers of palliative cancer patients had of the nursing intervention, PalliActive Caregivers, in reducing the uncertainty associated with illness and improving the caregiver's quality of life. METHODS: A qualitative approach with content analysis was used. Telephone interviews were conducted with 23 caregivers who participated in the intervention. FINDINGS: Five themes emerged from the content analysis: consolidating physical care, adopting a positive attitude, strengthening the support available to the caregiver, strengthening spirituality and strengthening relationships. CONCLUSION: The themes showed a positive impact of the intervention on aspects such as the caregiver's ability to cope, spirituality and social support of caregivers. The results also indicated the possibility of conducting this type of study to identify other assessment variables for future interventions.

Development and content validation of an NOC-based instrument for measuring knowledge and self-care behaviors in hypertensive disorders of pregnancy: CoNOCiTHE.

PURPOSE: The aim of this study is to design and validate the content of an instrument based on the Nursing Outcomes Classification (NOC) "Knowledge: disease process" and "Risk control: hypertension" to measure pregnant women's knowledge and self-care behaviors about hypertensive disorders. METHODS: The study was carried out in three phases: (a) content validity of the indicators, (b) construction, and (c) content validity of the instrument. FINDINGS: The instrument contains 72 items with an average content validity ratio and representativeness of 0.92. The items that did not reach the established values were eliminated or reformulated according to the observations made by the experts. CONCLUSIONS: This study provides the first instrument for perinatal maternal care designed from the NOC that has demonstrated adequate content validity and representativeness of the NOCs on which it is based. The next phase in the development of the instrument is to test its validity and reliability. IMPLICATIONS FOR NURSING PRACTICE: CoNOCiTHE is a tool that can be useful in assessing pregnant women's knowledge and self-care behaviors about hypertensive disorders, contributing to the documentation and quality of maternal perinatal nursing care.

Validation of the Latin American-Spanish version of the scale 'Quality of Life in Life-Threatening Illness-Family Caregiver Version' (QOLLTI-F).

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American-Spanish version of the QOLLTI-F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n = 17), face and content validity (n = 21), construct validity, internal consistency (n = 208) and test-retest reliability (n = 35). Main family caregivers of stage-IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven-factor structure did not show appropriate model fit indices. The data revealed instead a new 3-factor structure related to (1) impact of care-giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test-retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American-Spanish version of the QOLLTI-F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study.

Quality of life of family caregivers of people with cancer in palliative care. / Calidad de vida de cuidadores familiares de personas con cáncer que reciben atención de cuidados paliativos.

OBJECTIVE: To describe quality of life and related factors in a sample of Colombian caregivers of people with cancer in palliative care. METHOD: A correlational, descriptive and cross-sectional study conducted with 208 family caregivers of people with cancer in outpatient palliative care in Medellín, Colombia. The Quality of Life in Life-Threatening Illness - Family Caregiver Version (QOLLTI-F) instrument was used. RESULTS: Quality of life obtained scores between 116.36 and 122.35 (95%CI). The dimensions with the lowest scores were Patient condition (2.4-3.2, 95%CI), Caregiver's own state (36.2-39.9, 95% CI) and Environment (14.4-15.7, 95%CI). The patient's and caregiver's ages and the Karnofsky index presented a positive correlation, from weak to moderate and significant with the caregiver's quality of life. The daily hours devoted to care presented a weak correlation, negative and significant, with the overall quality of life and with the Caregiver's own state dimension. CONCLUSION: It is necessary to develop interventions to improve quality of life in caregivers of people with advanced cancer in the palliative phase, considering the importance of relief actions and the management of the patient's functional dependence.

Relationship Between Quality of Life of Children With Cancer and Caregiving Competence of Main Family Caregivers.

OBJECTIVE: The purpose of this study was to describe the caregiver's proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver's competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. METHOD: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). RESULTS: The mean of the children's QoL was 102.0 points, and the caregivers' competence score was 211.24. Caregiver's competence (t = 5.814, p < .01), marital status (t = 1.925, p < .05), time as a caregiver (t = 2.087, p < .05), number of hours spent caring for the child (t = 2.621, p < .05), and caregiver's previous caring experiences (t = 2.068, p < .05) were found to influence caregiver's proxy-report of the QoL of children with cancer. CONCLUSIONS: High competence in main family caregivers positively influence caregiver's proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers' sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver's previous experiences because those aspects influence main family caregivers' proxy-report about their children's QoL.

Palliative Care and Oncology in Colombia: The Potential of Integrated Care Delivery.

Palliative care is on the global health agenda, as only approximately 14% of people who require palliative care receive it [...].

The "PalliActive Caregivers" Intervention for Caregivers of Patients With Cancer in Palliative Care: A Feasibility Pilot Study.

This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care.

Uncertainty in illness in family caregivers of palliative care patients and associated factors. / Incerteza dos cuidadores familiares na doença de pacientes sob cuidados paliativos e fatores associados.

OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty. METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations. RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050). CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.

¿Cuál es la evidencia actual sobre cuidadores familiares de niños con cáncer?: Una revisión umbrella / What is the current evidence on family caregivers of children with cancer? An umbrella review / Qual é a evidência atual sobre cuidadores familiares de crianças com câncer?: Uma revisão geral

Introducción: El cáncer infantil causa un gran impacto no sólo para los niños sino para sus cuidadores familiares. Objetivo: Determinar el estado actual de la evidencia acerca de los cuidadores familiares de niños con cáncer, a partir de revisiones de literatura publicadas entre el 2010 y 2020. Materiales y métodos: Se realizó una revisión tipo "Umbrella", incluyendo revisiones de literatura, sistemáticas y metaanálisis sobre el cuidador familiar del niño con cáncer como tema principal. Se buscó en las bases de datos Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar y Scielo. Se incluyeron 21 artículos en la revisión. Resultados: Se determinaron 6 temas de investigación prevalentes: 1) Síntomas psicosociales: Impacto del cáncer en el cuidador familiar, 2) Necesidades del cuidador familiar en la transición del rol de cuidador, 3) Comunicación parental en el contexto de cáncer infantil, 4) Afrontamiento del cuidador ante la enfermedad del niño, 5) Sobrecarga del cuidador familiar, 6) Duelo del cuidador familiar al final de la vida del niño con cáncer. Conclusiones: Se describe las necesidades, el impacto de tipo psicosocial y emocional derivados de la enfermedad, el duelo y la comunicación. Se requiere mayor investigación sobre las estrategias de afrontamiento para estos cuidadores.

Introduction: Childhood cancer has a large impact not only on children but also on their family caregivers. Objective: To determine the current state of the evidence on family caregivers of children with cancer through literature reviews conducted between 2010 and 2020. Materials and methods: An umbrella-type review was carried out, including literature and systematic reviews as well as meta-analysis, which had as a main topic family caregivers of children with cancer. The Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar and Scielo databases were searched, finding 21 relevant articles. Results: 6 prevalent research topics were determined: 1) Psychosocial symptoms: impact of cancer on the family caregiver; 2) Needs of the caregiver in the transition of the role of caregiver; 3) Parental communication in the context of childhood cancer; 4) Coping with the child's disease; 5) Overload of the family caregiver; 6) Grief of the family caregiver at the moment of the child's death. Conclusions: The evidence mostly describes the needs of caregivers, the psychosocial- and emotional-type impacts derived from the disease, grief, and communication. More research is required on the coping strategies of these caregivers.

Introdução: O câncer infantil causa grande impacto não só para as crianças, mas também para seus cuidadores familiares. Objetivo: Determinar o estado atual das evidências sobre cuidadores familiares de crianças com câncer a partir de revisões de literatura realizadas entre 2010 e 2020. Materiais e métodos: Foi realizada uma revisão "Umbrela", incluindo revisões de literatura, revisões sistemáticas e meta-análise sobre o cuidador familiar de crianças com câncer como tema principal. Foram pesquisadas as bases de dados Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar e Scielo. Vinte e um artigos foram incluídos na revisão. Resultados: Foram determinados seis temas de investigação prevalentes: 1) Sintomas psicossociais: impacto do câncer no cuidador familiar, 2) Necessidades do cuidador familiar na transição do papel de cuidador, 3) Comunicação parental no contexto do câncer infantil, 4) Enfretamento do cuidador perante o adoecimento da criança, 5) Sobrecarga do cuidador familiar, 6) Luto do cuidador familiar no final da vida da criança com câncer. Conclusões: A evidência descreve principalmente as suas necessidades, o impacto psicossocial e emocional derivado da doença, luto e comunicação. Mais pesquisas são necessárias sobre estratégias de enfrentamento para esses cuidadores.

Role adoption, anxiety, depression and loneliness in family caregivers of patients with chronic diseases / Adopción del rol, ansiedad, depresión y soledad en cuidadores familiares de pacientes con enfermedades crónicas / Adoção do papel, ansiedade, depressão e solidão em cuidadores familiares de pacientes com doenças crônicas

Objective: to describe and explore the relationship of loneliness, anxiety and depression with adoption of the caregiver role among individuals caring for people with chronic diseases in Colombia. Methods: this was an exploratory and cross-sectional study involving 960 primary caregivers of individuals with chronic diseases. We applied the Caregiver Role Adoption Scale, the University of California at Los Angeles Loneliness Scale, and the Anxiety and Depression Scale. Principal component and multiple correspondence analyses were performed for clustering. Results: among the participating caregivers, 40.8% reported experiencing depression, 59% reported anxiety, 54.6% reported moderate to severe loneliness, and 88.6% reported satisfactory adoption of the caregiver role. Caregivers who presented basic or insufficient role adoption levels tended to have higher scores for anxiety, depression and loneliness. Conclusion: adoption of the caregiver role is a mediator in the anxiety, depression and loneliness levels among caregivers. Strategies aimed at supporting caregivers should include training for the caregiver role to mitigate the negative impacts of anxiety, depression and loneliness.

Objetivo: describir y explorar la relación de la soledad, la ansiedad y la depresión con la adopción del rol de cuidador entre personas que se ocupan de cuidar pacientes con enfermedades crónicas en Colombia. Métodos: se trató de un estudio exploratorio y transversal con la participación de 960 cuidadores principales de personas con enfermedades crónicas. Aplicamos la Escala de Adopción del Rol de Cuidador, la Escala de Soledad de la Universidad de California de Los Ángeles y la Escala de Ansiedad y Depresión. Se realizaron análisis de componentes principales y de correspondencia múltiple para el clustering . Resultados: el 40,8% de los cuidadores que participaron en el estudio informó padecer depresión, el 59% informó ansiedad, el 54,6% indicó soledad de moderada a grave y el 88,6% presentó adopción satisfactoria del rol de cuidador. Los cuidadores que presentaron los niveles básico o insuficiente en términos de adopción del rol tendieron a obtener puntuaciones de ansiedad, depresión y soledad más elevadas. Conclusión: adoptar el rol de cuidador es un mediador de los niveles de ansiedad, depresión y soledad entre los cuidadores. Las estrategias dirigidas a apoyar a los cuidadores deberían incluir preparación para dicho rol a fin de mitigar los efectos negativos de la ansiedad, la depresión y la soledad.

Objetivo: descrever e explorar a relação entre a solidão, a ansiedade e a depressão com a adoção do papel de cuidador entre os indivíduos que cuidam de pessoas com doenças crônicas na Colômbia. Método: trata-se de um estudo exploratório e transversal que envolveu 960 cuidadores primários de indivíduos com doenças crônicas. Foi aplicada a Escala de Adoção do Papel de Cuidador, a Escala de Solidão da Universidade da Califórnia em Los Angeles e a Escala de Ansiedade e Depressão. Foram realizadas análises de componentes principais e de correspondência múltipla para o agrupamento. Resultados: entre os cuidadores participantes, 40,8% relataram ter depressão, 59% relataram ansiedade, 54,6% relataram solidão moderada a grave e 88,6% relataram uma adoção satisfatória do papel de cuidador. Os cuidadores que apresentaram níveis básicos ou insuficientes de adoção do papel tenderam a ter pontuações mais elevadas de ansiedade, depressão e solidão. Conclusão: a adoção do papel de cuidador é um mediador nos níveis de ansiedade, depressão e solidão entre os cuidadores. As estratégias destinadas a apoiar os cuidadores devem incluir o treinamento para o papel de cuidador, a fim de atenuar os impactos negativos da ansiedade, da depressão e da solidão.

Escalas en español para valoración de personas en cuidados paliativos y sus familias: revisión sistemática psicométrica / Scales in Spanish for Assessing People in Palliative Care and their Families: Psychometric Systematic Review / Escalas en español para valoración de personas en cuidados paliativos y sus familias: revisão sistemática psicométrica

Introducción: una de las bases de la atención en cuidados paliativos es la valoración regular e integral de síntomas en pacientes y familias. Al respecto, es importante reconocer las escalas usadas en cuidados paliativos en idioma español y sus propiedades psicométricas. Objetivo: identificar las escalas en español para la valoración del paciente en cuidados paliativos y su familia, evaluar sus propiedades psicométricas y calidad metodológica de sus propiedades basados en los estándares Cosmin. Método: revisión sistemática psicométrica. Se realizó una búsqueda de literatura de las escalas de valoración en cuidados paliativos en español y sus propiedades psicométricas de acuerdo con la propuesta Prisma. Se utilizaron los estándares propuestos por Cosmin para la evaluación de propiedades psicométricas. Resultados: se evaluaron 21 escalas de valoración. La escala de calidad de vida EORTC-QLQ fue la que mayor número de propiedades reportó. La consistencia interna, validez de constructo, contenido y fiabilidad fueron las pruebas más reportadas. Ningún estudio reportó pruebas de validez transcultural. Conclusión: los resultados de este estudio indican una gran variedad de instrumentos disponibles en español para valorar al paciente y al cuidador familiar en cuidados paliativos. Sin embargo, un gran número de propiedades psicométricas de los instrumentos aún se encuentran incompletas. Los resultados muestran la necesidad de seguir investigando las propiedades psicométricas de dichas escalas para garantizar la confiabilidad de estos instrumentos, así como su uso en la práctica e investigación.

Introduction: One of the bases of palliative care is the regular and comprehensive assessment of symptoms in patients and families. In this regard, it is important to recognize the scales used in palliative care in Spanish and their psychometric properties. Objective: Identify the scales in Spanish for the assessment of palliative care patients and their families, evaluate their psychometric properties, and the methodological quality of their properties based on the Cosmin standards. Method: Psychometric systematic review. A literature search of the assessment scales in palliative care in Spanish and its psychometric properties was carried out according to the Prisma proposal. The standards proposed by Cosmin for the evaluation of psychometric properties were used. Results: 21 rating scales were evaluated. The EORTC-QLQ quality of life scale was the one that reported the highest number of properties. Internal consistency, construct validity, content and reliability were the most reported tests. No study reported evidence of cross-cultural validity. Conclusion: The results of this study indicate a wide variety of instruments available in Spanish to assess the patient and the family caregiver in palliative care. However, a large number of psychometric properties of the instruments are still incomplete. The results show the need to continue investigating the psychometric properties of these scales to guarantee the reliability of these instruments, as well as their use in practice and research.

Introdução: uma das bases dos cuidados paliativos é a avaliação regular e abrangente dos sicomet em pacientes e familiares. Nesse sentido, é importante reconhecer as escalas utilizadas em cuidados paliativos em sicome e suas propriedades psicométricas. Objectivo: identificar as escalas em sicome para a avaliação de pacientes em cuidados paliativos e suas famílias, avaliar suas propriedades psicométricas e a qualidade metodológica de suas propriedades com base nos sicom Cosmin. Método: revisão sistemática psicométrica. Foi realizada uma pesquisa bibliográfica para escalas de avaliação de cuidados paliativos em sicome e as suas propriedades psicométricas de sicom com a proposta do Prisma. Foram utilizadas as normas propostas pelo Cosmin para a avaliação das propriedades psicométricas. Resultados: Vinte e uma escalas de classificação foram avaliadas. A escala de qualidade de vida EORTC-QLQ relatou o maior número de propriedades. A sicometría interna, validade da construção, conteúdo e fiabilidade foram os testes mais relatados. Nenhum estudo relatou provas de validade transcultural. Conclusão: os resultados deste estudo sicome uma grande variedade de instrumentos disponíveis em sicome para avaliar o paciente e o cuidador familiar em cuidados paliativos. No entanto, um grande número de propriedades psicométricas dos instrumentos estão ainda incompletas. Os resultados mostram a necessidade de mais investigação sobre as propriedades psicométricas destas escalas para sicomet a fiabilidade destes instrumentos, bem como a sua utilização na prática e na investigação.

Looking for Control at the End of Life Through the Bond: A Grounded Theory on the Hospital Discharge Process in Palliative Care.

The hospital-to-home transition in palliative care is a vital process that requires continuity of care through the discharge process. However, little is known about the perceptions of patients with cancer and their family caregivers during this important palliative care transition in the Colombian health care context. The purpose of this study was to explore the experiences of the patient-family caregiver dyad in palliative care during the transition process between hospital and home in a health care institution in Bogota, Colombia. Using a grounded constructivist theory design, 30 patients with cancer receiving palliative care and 30 family caregivers participated in this study. The data were collected through 36 dyad interviews conducted in either the hospital or home of the participants. For the analysis, the constructivist analytical method was used. Findings revealed that "Looking for control at the end of life through the bond" was the main category of the study. This category could be further elaborated into 4 categories: (1) yearning for home; (2) recognizing burden; (3) experiencing uncertainty, a lack of control; and (4) achieving control. By understanding the patient and family caregiver perspective of care during the hospital-to-home transition, health care systems have the possibility to implement care programs in palliative care with an innovative educational component for health care professionals.

Eficacia de la intervención “Cuidadores PaliActivos” en personas cuidadoras de pacientes con cáncer en cuidados paliativos / Efficacy of the “Cuidadores PaliActivos” (“PaliActive Caregivers”) intervention in caregivers for patients with cancer on palliative care

Objetivo: determinar el efecto de la intervención educativa de Enfermería “Cuidadores PaliActivos” en la mejora de la calidad de vida, la adopción del rol y el aumento de la percepción de soporte social de personas cuidadoras familiares de pacientes con cáncer en cuidados paliativos en un hospital de alta complejidad en Medellín, Colombia. Método: proyecto de ensayo clínico controlado y aleatorizado que se realizará durante el año 2022. Se incluirán personas adultas cuidadoras de pacientes con cáncer en cuidados paliativos con más de tres meses de expectativa vital (tamaño muestral n= 151). Se efectuará una aleatorización 1:1. El grupo experimental recibirá dos sesiones individuales con cartilla educativa y aplicación móvil de apoyo (15 y 75 mín. aprox.). El grupo control educación grupal (2 h) y encuentro individual (25 min). Se medirán variables sociodemográficas, calidad de vida, adopción del rol y percepción de soporte social, antes de la intervención, a la semana y a los dos meses. Se realizarán comparaciones intra e intergrupos. Conclusiones: se espera demostrar la eficacia de la intervención de Enfermería “Cuidadores PaliActivos” en las variables estudiadas y de esta manera aportar una herramienta que pueda ser útil para mejorar la atención de personas cuidadoras.(AU)

Objective: to determine the effect of the educational Nursing intervention “Cuidadores PaliActivos” (“PaliActive Caregivers”) on the improvement of quality of life, role adoption and perception of social support among caregiver relatives of patients with cancer on palliative care in a high-complexity hospital from Medellín, Colombia. Method: a project for a controlled and randomized clinical trial to be conducted during 2022. The study will include adult persons who are caregivers for patients with cancer on palliative care with over three months of life expectancy (sample size n= 151). There will be 1:1 randomization. The experimental arm will receive two individual sessions with educational booklet and mobile application for support (15 and 75 minutes approximately). The control arm will receive group education (2 hours) and individual meeting (25 minutes). Sociodemographic variables will be measured, as well as quality of life, role adoption and perception of social support, before the intervention, at one week and at two months. Intra and inter-arm comparisons will be conducted. Conclusions: it is expected that the efficacy of the “Cuidadores PaliActivos” (“PaliActive Caregivers”) Nursing intervention will be demonstrated in the variables studied; and thus, a tool will be provided that can be useful to improve the care of caregivers.(AU)

Cuidando en el hogar a una persona con enfermedad cerebrovascular:del desconocimiento a la satisfacción / Cuidando de uma pessoa com doença cerebrovascular em casa: da ignorância àsatisfação / Caring a Person with Cerebrovascular disease at home: from the lack knowledge to satisfaction

Introduction: cerebrovascular diseases generate disability and dependence. It is the familycaregiver who assumes responsibility for the daily care of the patient with sequelae of this disease.Assuming this new role is not an easy activity and requires preparation and accompaniment.295Cultura de los Cuidados. 1º Cuatrimestre 2022. Año XXVI. nº 62Objective: to know the experience of the family caregiver when they first take care of a personwith sequelae of a stroke at home. Methodology: qualitative study with a grounded theoryapproach. 16 family caregivers participated. The information was collected through semistructured interviews. The data analysis was done with initial, focused, axial and theoreticalcoding. Results: five categories were identified: Taking care of my family: a new experience,Changing the environment: making the experience easier, Support from others: feeling companyin care, Feeling satisfaction: the result of care well done and Living care: between fear, faith andlove. The central category was called Caring at home: from lack of knowledge to satisfaction.Conclusions: the experience of caring for the first time represents a challenge for the familycaregiver to create new strategies that favor caring for the person. Nursing professionals have theresponsibility of designing nursing interventions that meet the specific needs of this population.

Introducción: las enfermedades cerebrovasculares generan discapacidad y dependencia. Es elcuidador familiar quien asume la responsabilidad del cuidado diario de la persona con secuelasde esta enfermedad. El asumir este nuevo rol no es una actividad sencilla y requiere de preparacióny acompañamiento. Objetivo: comprender la experiencia del cuidador familiar cuando asume porprimera vez el cuidado en el hogar de una persona con secuelas de un accidente cerebrovascular.Metodología: estudio cualitativo con enfoque de teoría fundamentada. Participaron 16 cuidadoresfamiliares. Se recolectó la información por entrevistas semiestructuradas. El análisis de los datosse hizo con codificación inicial, focalizada, axial y teórica. Resultados: se identificaron cincocategorías: Asumiendo el cuidado de mi familiar: una nueva experiencia, Cambiando el entorno:haciendo más fácil la experiencia, El apoyo de otros: sintiendo compañía en el cuidado, Sintiendosatisfacción: el resultado de un cuidado bien hecho y Viviendo el cuidado: entre el miedo, la fe yel amor. La categoría central se denominó Cuidando en el hogar: desde la falta de conocimientoa la satisfacción. Conclusiones: la experiencia de cuidar por primera vez representa para elcuidador familiar un reto para crear nuevas estrategias que favorezcan el cuidado de la persona.Los profesionales de enfermería tienen la responsabilidad de diseñar intervenciones de enfermeríaque atiendan las necesidades específicas de esta población.

Introdução: as doenças cerebrovasculares geram incapacidade e dependência. É ocuidador familiar que assume a responsabilidade pelo cuidado diário ao pessoa comsequelas desta doença. Assumir este novo papel não é uma atividade fácil e requerpreparação e acompanhamento. Objetivo: conhecer a vivência do cuidador familiar aocuidar pela primeira vez de uma pessoa com sequela de AVE no domicílio. Metodologia:estudo qualitativo com abordagem teórica fundamentada. Participaram 16 cuidadoresfamiliares. As informações foram coletadas por meio de entrevistas semiestruturadas. A análisedos dados foi realizada com codificação inicial, focada, axial e teórica. Resultados: foramidentificadas cinco categorias: Cuidar do meu familiar: uma nova experiência, Mudar o ambiente:296Cultura de los Cuidados. 1º Cuatrimestre 2022. Año XXVI. nº 62tornar a experiência mais fácil, O apoio dos outros: sentir-se companhia no cuidado, Sentir-sesatisfeito: o resultado de um cuidado bem feito , Viver o cuidado: entre o medo, a fé e o amor.Conclusões: a experiência de cuidar pela primeira vez representa um desafio para o cuidadorfamiliar criar novas estratégias que favoreçam o cuidar da pessoa. Os profissionais deenfermagem têm a responsabilidade de projetar intervenções de enfermagem que atendam àsnecessidades específicas desta população.

Impacto de una estrategia educativa para la enseñanza en línea del cuidado paliativo: mediante el análisis de métodos mixtos / Impact of an educational strategy for online teaching of palliative care through mixed methods analysis / Impacto de uma estratégia educativa para capacitação online do cuidado paliativo: mediante a análise de métodos mistos

Resumen Objetivo: medir la aceptabilidad de un curso virtual de cuidados paliativos y el impacto en los conocimientos sobre cuidados paliativos, confort y nivel de tanatofobia en estudiantes de enfermería. Metodología: se utilizó un diseño de métodos mixtos, en el que se incluyeron 39 participantes estudiantes de enfermería de una universidad pública. Para la información cuantitativa, se aplicaron las escalas Palliative Care Quiz for Nursing, confort en cuidados paliativos y la escala de tanatofobia, antes y después de tomar el curso virtual. Para la información cualitativa, se realizaron cinco grupos focales, tres antes de iniciar el curso y dos al terminarlo. Resultados: se encontró que el curso aumentó significativamente el nivel de conocimiento en cuidados paliativos (p = 0,000), el confort en la atención de cuidados paliativos (p = 0,000) y disminuyó los niveles de tanatofobia (p = 0,005). Además, se identificaron cuatro temas que complementaron los resultados cuantitativos: (a) Entender y conectar con las TIC: oportunidades y limitaciones; (b) vivir el proceso de enseñanza de aprendizaje virtual; (c) Percepciones sobre el cuidado paliativo; y (d) Afrontamiento al final de la vida: persona, familia y enfermera. Conclusiones: este curso fue aceptado por los estudiantes y demostró aumentar los conocimientos frente al cuidado paliativo y el confort, además que contribuyó a disminuir la tanatofobia en los participantes. Los resultados evidencian que estrategias como los cursos virtuales, con plataformas y herramientas innovadoras, pueden llenar los vacíos existentes en los currículos frente a la formación en cuidados paliativos en Colombia.

Abstract Objective: to measure the acceptability of a virtual course on palliative care and the impact on knowledge about palliative care, comfort and level of thanatophobia in nursing students. Methodology: a mixed methods design was used in which 39 participating nursing students from a public university were included. For quantitative information, the Palliative Care Quiz for Nursing scales, the Comfort in palliative care and the Thanatophobia scale were applied before and after taking the virtual course. For qualitative information, five focus groups were held, three before starting the course and two after finishing it. Results: It was found that the course significantly increased the level of knowledge in palliative care (p = 0.000), comfort in palliative care (p = 0.000) and decreased levels of thanatophobia (p = 0.005). In addition, four themes were identified that complemented the quantitative results: (a) Understanding and connecting with ICTs: opportunities and limitations; (b) experience the virtual learning teaching process; (c) Perceptions about palliative care; and (d) confrontation at the end of life: person, family and nurse. Conclusions: this course was accepted by the students and proved to increase knowledge about palliative care and comfort, in addition to contributing to reduce thanatophobia in the participants. The results show that strategies such as virtual courses, with innovative platforms and tools, can fill the existing gaps in the curricula regarding training in palliative care in Colombia.

Resumo Objetivo: medir a aceitabilidade de um curso virtual de cuidados paliativos e o impacto nos conhecimentos sobre cuidados paliativos, conforto e nível de tanatofobia em estudantes de enfermagem. Metodologia: Utilizou-se um desenho de métodos mistos, no que se incluíram 39 participantes estudantes de enfermagem de uma universidade pública. Para a informação quantitativa, aplicaram-se as escalas Palliative Care Quiz for Nursing, conforto em cuidados paliativos e a escala de tanatofobia, antes e depois de tomar o curso online. Para a informação qualitativa, realizaram-se cinco grupos focais, três antes de iniciar o curso e dois ao terminá-lo. Resultados: Encontrou-se que o curso aumentou significativamente o nível de conhecimento em cuidados paliativos (p = 0,000), o conforto na atenção de cuidados paliativos (p = 0,000) e diminuiu os níveis de tanatofobia (p = 0,005). Além, se identificaram quatro temas que complementaram os resultados quantitativos: (a) Entender e conectar com as TIC: oportunidades e limitações; (b) viver o processo de ensino de aprendizagem virtual; (c) Percepções sobre o cuidado paliativo; e (d) Afrontamento ao final da vida: pessoa, família e enfermeira. Conclusões: este curso foi aceitado pelos estudantes e demostrou aumentar os conhecimentos frente ao cuidado paliativo e o conforto, além que contribuiu a diminuir a tanatofobia nos participantes. Os resultados evidenciam que estratégias como os cursos online, com plataformas e ferramentas inovadoras, podem encher os vazios existentes nos currículos frente à formação em cuidados paliativos na Colômbia.