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.

Effectiveness of a case management model for people with multimorbidity: Mixed methods study.

AIMS: The aim was to determine the impact of a case management model on indicators of health service utilization, polypharmacy, quality of life and dependency of patients with multimorbidity, and family caregiver overload in a group of patients insured with two insurance companies in the city of Bogotá (Colombia). DESIGN: This was a mixed methods study, which integrated a quantitative and qualitative component. METHODS: The study was conducted between July 2019 and March 2020. A quantitative component is based on a pre-experimental study with a single group and pre- and post-test measurements. Patients with multimorbidity with a medium or high level of complexity were included in the study. A sample of 317 patients and their caregivers was estimated. Following the completion of the intervention, a descriptive study that explored the perspective of nurses, patients and caregivers was developed to better understand the process and results from their own words and experience. A total of 17 dyads of patients and caregivers were interviewed, as well as six nurse managers. The integration strategy was developed based on a comparison made from the perspective of multiple stakeholders. RESULTS: The model's impact on quality of life, particularly in terms of social functioning and mental health, has been documented. Caregiver overload was reduced and an improvement in the adoption of the role was observed, aspects that converge with the experience of the dyads and the caregivers in the support and backing provided by the model. CONCLUSION: The intervention was structured in five modules: case detection, complexity screening, comprehensive assessment with various instruments, individualized care and follow-up plan, and plan assessment. The nurse manager role is confirmed as that of a professional with the leadership capacity to articulate disciplines and actors, whilst also dealing with the day-to-day needs of people with complex health conditions. IMPACT: A comprehensive and integrated approach to patients with multiple diseases in a health insurance context marked by access barriers and fragmentation of health services. The study provides quantitative and qualitative evidence of the benefits of the case management model in Colombia for patients with multiple diseases and their family caregivers, particularly in terms of the psychosocial dimensions of health-related quality of life and dependence assessment. A significant impact on the caregiver role, as well as an improvement in perception and trust in the health system, was observed as a result of the overcoming of administrative barriers achieved by the nurse case manager. The findings are considered to be extremely useful for decision-makers and insurers in developing a case management model focused on comprehensive and individualized care plans, as well as for individuals with multiple diseases and their caregivers.

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.

Effectiveness of a case management model for the comprehensive provision of health services to multi-pathological people.

AIM: To determine the effectiveness of a case management model for approaching multi-pathological people in a health promoting entity of the contributory healthcare scheme in Bogotá, Colombia between 2018 - . DESIGN: Mixed methods research. METHOD: The study contemplates two components: a quantitative component using a quasi-experimental analytical design before and after longitudinal intervention to determine the effectiveness of the case management model and a qualitative descriptive design to understand the experience of the participants about the model. The Administrative Department of Science, Technology and Innovation of Colombia (Colciencias) funded this project by means of call 777-November 2017, under the financing agreement No. 848-December 2017. DISCUSSION: Addressing problems deriving from the structure of the Colombian healthcare system is crucial for implementing case management models. Furthermore, the effectiveness of such models may be affected by power relations and market failures, but the proved potential of a model may represent a generalized benefit for the Colombian health system. IMPACT: In Colombia, considering complications and management of chronic non-communicable diseases as isolated cases is considered as the highest cost events in healthcare provision, since an average of 12.8 million pesos is invested in each patient. This has led to rethink the management in these patients by means of a comprehensive model that guarantees the effectiveness of healthcare delivery, in the framework of a healthcare system heavily affected by payment capacity, where the market has a strong predominance, such as the case of Colombia. TRIAL REGISTRATION NUMBER: RPCEC00000293.

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.

Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America.

In Latin America (LA), 40-50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.

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.

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.

Fear, Stress, and Knowledge regarding COVID-19 in Nursing Students and Recent Graduates in Mexico.

OBJECTIVES: The study sought to correlate fear, stress, knowledge regarding COVID-19 in Nursing students and recent graduates in Mexico. METHODS: Correlational design, sample comprising 912 nursing students and graduates during the last 18 months from public and private universities of Mexico. To measure the variables, the study applied the instrument Fear of COVID-19 Scale, knowledge subscale of the scale Knowledge, attitudes, and practices towards COVID-19, and the instrument COVID Stress Scale. RESULTS: Relationship was found of the age variable with fear, danger of contamination, traumatic stress, knowledge and minor socioeconomic consequences (p<0.05). Likewise, relationship was observed of fear with stress regarding COVID-19, danger of contamination, socioeconomic consequences, xenophobia, traumatic stress, and compulsive checking (p<0.05). Stress and knowledge explain the presence of fear regarding COVID-19 in 50.3%, and fear and knowledge explain stress regarding COVID-19 in 50.4%. CONCLUSIONS: Nursing students and recent graduates have high levels of stress and fear, besides low level of knowledge. The presence of high stress and low knowledge predict fear regarding COVID-19. Interventions are required on knowledge, stress, and fear regarding COVID-19 in the population studied.

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.

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.

PALLIATIVE CARE AND END OF LIFE CARE IN LATIN AMERICA: SCOPING REVIEW

INTRODUCTION: Populational aging and improved treatments for chronic non-communicable diseases extend life expectancy but not always quality of life. By 2060, 48 million people are expected to die of serious illnesses, and 83% of these deaths will occur in developing countries. Only 14% of those who needed palliative care receive it. AIM: To describe the methodological trends, thematic areas, populations studied, and future challenges in Latin American regions with respect to adult palliative care. METHODS: A scoping review of 60 articles from 2010 to 2019 in indexed journals in English, Spanish, and Portuguese was conducted. RESULTS: Most articles were from Brazil, Colombia, and Mexico. Patients, caregivers, healthcare professionals, and students constituted the primary study population. Quality of Life, knowledge, and costs of attention were also assessed. It appears that early palliative care improves the outcomes of patients, caregivers, and health care professionals, however, the disparity in palliative care services between Latin America, US, UK, Canada, and Spain is concerning. CONCLUSIONS: Globally, more palliative care is needed, especially in Latin America. However, there are not enough graduate palliative care programs. Academic palliative care education must be promoted. Communication between the interdisciplinary team, the patient, and the caregiver is critical. While the region's scientific literature output has improved, many knowledge gaps remain. For patients' sake, governments should regulate, create, and facilitate palliative care services.

Soledad, ansiedad, depresión y adopción del rol del cuidador de personas con enfermedad crónica en San Gil, Colombia

Introducción: Los cuidadores de personas con enfermedad crónica adoptan un nuevo rol que puede implicar respuestas como ansiedad, depresión y soledad. Objetivo: Describir y correlacionar las variables de adopción del rol del cuidador, depresión, ansiedad y soledad en cuidadores familiares de personas con enfermedad crónica en la provincia de Guanentina, en San Gil, Santander (Colombia), durante el año 2021. Método: Estudio descriptivo, analítico de corte transversal realizado con 112 cuidadores familiares de personas con enfermedades crónicas. Se utilizó una ficha de caracterización y los instrumentos: Escala adopción del rol del cuidador ROL, escala de soledad de UCLA (University of California at Los Ángeles) y Escala Hospitalaria de Ansiedad y Depresión HADS. Resultados: El perfil de los cuidadores fue predominantemente mujer; de 49 años en promedio; casadas, solteras o en unión libre; grado máximo de escolaridad bachiller; de ocupación hogar y nivel socioeconómico medio bajo y bajo. Se encontraron niveles altos de ansiedad en el 18,3 % de ellas, depresión en el 4,3 % y soledad en el 0,9 %, además, se evidenciaron niveles de adopción del rol del cuidador satisfactorios en el 100 %. Se encontró una correlación débil entre ansiedad, depresión y soledad y una correlación inversa entre estas variables con la adopción del rol del cuidador. De igual manera, se encontró una correlación directa entre la edad del paciente y los meses de diagnóstico con las horas de cuidado al día. Por último, se halló carácter predictivo de la ansiedad y la depresión sobre la adopción del rol, de la ansiedad y la adopción del rol sobre la depresión, y de la soledad y la depresión sobre la ansiedad. Conclusiones: los cuidadores tenían niveles de ansiedad, depresión y soledad normales que, al correlacionarse entre sí y con la adopción del rol del cuidador, validan la idea de que, si se interviene a los cuidadores en su trayectoria con orientaciones sobre su rol en cuanto a las labores, la organización y las respuestas se puede contribuir en la disminución de la ansiedad, depresión y soledad. Discusión: la correlación directa observada entre la soledad, depresión y ansiedad es coherente con lo reportado en estudios previos con cuidadores. Acorde con lo reportado por la literatura el desempeño satisfactorio del rol facilita los desenlaces en los cuidadores, en este caso, la moderación de la ansiedad, depresión y soledad.

Introduction: Caregivers of people with chronic disease adopt a new role that may involve responses such as anxiety, depression, and loneliness. Objective: To describe and correlate the variables of adoption of the role of caregiver, depression, anxiety and loneliness in family caregivers of people with chronic disease in the Guanentina province in San Gil, Santander (Colombia), during the year 2021. Methods: Descriptive study, cross-sectional analysis carried out with 112 family caregivers of people with chronic diseases. A characterization sheet and the ROL, UCLA and HADS instruments were used. Results: the profile of the caregivers was predominantly female and average age of 49 years; married, single or in civil union; maximum degree of high school education; of household occupation and low and low-middle socioeconomic level. High levels of anxiety were found in 18,3% of them, depression in 4,3% and loneliness in 0,9%, in addition, satisfactory levels of adoption of the caregiver role were evidenced in 100%. A weak correlation was found between anxiety, depression and loneliness and an inverse correlation between these variables with the adoption of the caregiver role. Similarly, a direct correlation was found between the patient's age and the months of diagnosis with the hours of care per day. Finally, anxiety and depression were found to be predictive of role adoption, of anxiety and role adoption on depression, and of loneliness and depression on anxiety. Conclusions: the caregivers had normal levels of anxiety, depression and loneliness that, when correlated with each other and with the adoption of the caregiver role, validate the idea that, if caregivers are intervened in their trajectory with guidance on their role in terms of the tasks, the organization and the answers can contribute in the reduction of anxiety, depression and loneliness. Discussion: The direct connection observed between loneliness, depression and anxiety is consistent with what has been reported in previous studies with caregivers. In accordance with what has been reported in the literature, satisfactory performance of the role facilitates the outcomes in caregivers, in this case, the moderation of anxiety, depression and loneliness.

Instrumentos para la medición de sobrecarga del cuidador en pacientes con enfermedad crónica: revisión psicométrica / Instruments for the measurement of informal caregiver burden in patients with chronic disease: Psychometric review

Introducción: Los cuidadores de pacientes con enfermedad crónica experimentan sobrecarga en actividades de cuidado. Existen diferentes instrumentos que miden la sobrecarga, en Latinoamérica se han validado diferentes instrumentos. Objetivo: Evaluar la calidad metodológica de las propiedades psicométricas de los instrumentos que miden la sobrecarga del cuidador en el contexto latinoamericano. Metodología: Revisión sistemática psicométrica. La búsqueda incluyó la combinación de 3 aspectos: estudios de validación; idioma: español, portugués o inglés, lugar de validación: Latinoamérica. Resultados: Un total de 24 artículos se identificaron e incluían 10 instrumentos. El idioma de los artículos con mayor representación fue el español (n = 15). El país con mayor número de estudios de validación fue Brasil (n = 15). El instrumento con mayor número de validaciones fue la Encuesta de Zarit (n = 11). Conclusión: Los instrumentos identificados cuentan con buena calidad metodológica, sin embargo, se requieren futuros estudios que evalúen las propiedades psicométricas faltantes, en especial la validez de contenido.

Introduction: Caregivers of patients with chronic disease experience overload when carrying out continuous care tasks. In the world there are different instruments that measure this overload, in the Latin American context different instruments have been validated. Objetive: To evaluate the methodological quality of the psychometric properties of the instruments that measure caregiver burden in the Latin American. Methodology: Systematic psychometric review. The search included the combination of 3 aspects: validation studies; language: Spanish, Portuguese or English, and place of validation: Latin American. Results: A total of 24 articles were identified and included 10 instruments. The language of the articles with the highest representation was Spanish (n = 15). The country with the highest number of validation studies was Brazil (n = 15). The instrument with the highest number of validations was the Zarit Survey (n = 11). Conclusion: The identified instruments have methodological quality; however, future research is necessary to evaluate the missing psychometric properties, especially content validity

Validez y confiabilidad del instrumento Adopción del rol de cuidador con uso de medicamentos / Validade e confiabilidade do instrumento Adoção do papel de cuidador com uso de medicamentos / Validity and reliability of the instrument Adoption of the caregiver role under medication use

Objetivo: realizar la validación de constructo, convergente y discriminante del instrumento Adopción del rol del cuidador con uso de medicamentos (ROL-M) y evaluar la consistencia interna de este. Materiales y método: estudio de validación psicométrica realizado entre agosto de 2020 y febrero de 2022, con una muestra de 321 cuidadores familiares. Resultados: escala con 32 ítems originales, que luego del análisis del constructo teórico y de los resultados iniciales condujo a la eliminación de 12 ítems y la realización de un nuevo análisis factorial exploratorio forzado a tres factores con los ítems restantes. Los 20 ítems definitivos fueron ajustados a los factores con adecuadas cargas y son congruentes con el planteamiento teórico del instrumento. Se obtuvo un alfa de Cronbach de 0,72, un coeficiente de Pearson de 0,233 con el instrumento rol y uno de -0,147 con el instrumento Zarit, lo que demuestra su validez convergente y divergente, respectivamente. Conclusiones: el instrumento rol-M mide de forma lógica el constructo y los ítems que lo conforman representan adecuadamente sus dominios. Este se proyecta como una herramienta clínica clave para desarrollar actividades educativas con relación a la promoción de la transición del cuidado y la educación farmacológica en el hogar.

Objetivo: realizar a validação do construto, convergente e discriminante, e avaliar a consistência interna do instrumento Adoção do papel do cuidador no uso de medicamentos (ROL-M). Materiais e método: estudo de validação psicométrica realizado entre agosto de 2020 e fevereiro de 2022, com amostra de 321 cuidadores familiares. Resultados: escala com 32 itens originais, que, após a análise do construto teórico e dos resultados iniciais, decidiu-se eliminar 12 itens e realizar uma nova análise fatorial exploratória forçada a três fatores com os itens restantes. Os 20 itens definitivos foram ajustados aos fatores com cargas adequadas e condizentes com a abordagem teórica do instrumento. Obteve-se alfa de Cronbach de 0,72, coeficiente de Pearson de 0,233 com o instrumento rol-M e de -0,147 com o instrumento de Zarit, o que demonstra sua validade convergente e divergente, respectivamente. Conclusão: o instrumento ROL-M mensura logicamente o constructo, e os itens que o compõem representam adequadamente seus domínios. Desenha-se como uma ferramenta clínica-chave para desenvolver atividades educacionais com relação à promoção da transição de cuidados e educação farmacológica no domicílio.

Objective: To conduct the construct, convergent, and discriminant validation of the instrument "Adoption of the role of the caregiver under medication use" (ROL-M) and evaluate its internal consistency. Materials and method: Psychometric validation study conducted between August 2020 and February 2022, with a sample of 321 family caregivers. Results: Scale with 32 original items, which after the analysis of the theoretical construct and initial results was subject to the elimination of 12 items and a new exploratory factor analysis forced to three factors with the 20 remaining items. These items were then adjusted to the factors with adequate loads and are consistent with the theoretical approach of the instrument. A Cronbach's alpha of 0.72 was obtained, while Pearson coefficient was 0.233 with the rol instrument and -0.147 with the Zarit instrument, demonstrating its convergent and divergent validity, respectively. Conclusions: The instrument Role Adoption in Medication Administration ROL-M logically measures the construct and the items that comprise this tool adequately represent its domains. This is projected as a key clinical input to develop educational activities related to the promotion of caregiving transition and pharmacological education at home.

Relationship between Burden and Perceived Social Support in Low-income Caregivers Authors / Relación entre la sobrecarga y el apoyo social percibido en cuidadores de bajos ingresos económicos / Relação entre sobrecarga e apoio social percebido em cuidadores de baixa renda

Objectives: To describe and correlate burden and social support in low-income caregivers of chronic patients. Material and methods: A descriptive and cross-sectional study was conducted with 170 low-income family caregivers of people with chronic diseases who answered a survey on sociodemographic and care variables, in addition to the Zarit scale to measure burden and the MOS questionnaire on perceived social support. The analysis was performed using descriptive and differential statistics. Results: Most caregivers were female, and the predominant kinship was father-son. A significant and negative correlation (rs = -.307, p < 0.001) was identified between the caregivers' burden and perceived social support, as well as a significant and positive correlation (rs = 0.278, p < 0.01) between the time devoted to care and the caregivers' burden. Conclusions: Low-income family caregivers require more social support to reduce the burden levels.

Objetivos: describir y correlacionar la sobrecarga y el apoyo social de cuidadores de pacientes crónicos con bajos ingresos económicos. Material y métodos: estudio descriptivo transversal realizado a 170 cuidadores familiares de personas con enfermedad crónica de bajos ingresos económicos a quienes se les aplicó una encuesta sobre variables sociodemográficas y de cuidado, además de la escala Zarit para medir la sobrecarga y el cuestionario MOS sobre apoyo social percibido. El análisis se realizó mediante estadística descriptiva y diferencial. Resultados: la mayoría de los cuidadores fueron mujeres y el vínculo filial predominante fue de padre e hijo. Se identificó una correlación significativa y negativa (rs = -0,307, p < 0,001) entre la sobrecarga del cuidador y el apoyo social percibido, como también una correlación significativa y positiva (rs = 0,278, p < 0,001) entre el tiempo dedicado al cuidado y la carga del cuidador. Conclusiones: los cuidadores familiares de bajos ingresos económicos requieren mayor apoyo social para disminuir los niveles de sobrecarga.

Objetivos: Descrever e correlacionar a sobrecarga e o suporte social de cuidadores de baixa renda de pacientes crônicos. Material e métodos: Estudo descritivo e transversal, realizado com 170 cuidadores familiares de baixa renda de pessoas com doenças crônicas, que responderam a um questionário sobre variáveis sociodemográficas e assistenciais, além da escala de Zarit para medir a sobrecarga e do questionário MOS sobre suporte social percebido. A análise foi realizada por meio de estatística descritiva e diferencial. Resultados: A maioria dos cuidadores era do sexo feminino e o vínculo filial predominante era entre pai e filho. Foi identificada uma correlação significativa e negativa (rs = -0,307, p < 0,001) entre a sobrecarga do cuidador e o suporte social percebido, assim como uma correlação significativa e positiva (rs = 0,278, p < 0,001) entre o tempo dedicado ao cuidado e a carga do cuidador. Conclusões: Os cuidadores familiares de baixa renda necessitam de maior suporte social para reduzir os níveis de sobrecarga.

Case management as an opportunity for healthcare: user experiences

Introduction: People with multimorbidity and their caregivers are beginning to be recognized as emerging subjects of health systems. In Colombia there is no differentiated approach to care for this population, as well as its health-disease process. Objective: To understand the experience of people with multimorbidity and their caregivers after receiving a case management intervention. Methods and materials: It is a qualitative study in which 33 participants among people with multimorbidity and their caregivers who received intervention with case managers were interviewed, a comparative analysis and use to tools analytics grounded theory. Results: There are 3 dimensions that are, the actors where nursing becomes relevant as a reliable source of care; the Care Meeting, as a space created within case management to maintain trust and; Results in the health system, where the need to integrate this type of outbreak into the Colombian Health Model is confirmed. Discussion: Complementary qualitative evidence data from the central study with a greater impact on the quality of care through the therapeutic relationship at home. Conclusion: The dyad requires home support for self-management of the disease based on trust, empathy, empowerment and administrative management carried out by case managers.

Introducción: Las personas con multimorbilidad y sus cuidadores empiezan a ser reconocidos como sujetos emergentes en los sistemas de salud. En Colombia no existe un abordaje diferenciado para la atención de esta población, así como de su proceso de salud-enfermedad. Objetivo: Entender las experiencias de personas con multimorbilidad y sus cuidadores tras recibir una intervención de gestión de casos. Materiales y métodos: Estudio cualitativo en el que se entrevistó a 33 participantes con multimorbilidad y sus cuidadores que recibieron una intervención por parte de gestores de casos; se realizó un análisis comparativo y se utilizaron herramientas analíticas de la teoría fundamentada. Resultados: Existen tres dimensiones: los actores, donde la enfermería cobra relevancia como fuente confiable de cuidado; la reunión de atención o cuidado, como un espacio creado en la gestión de casos para mantener la confianza; y resultados en el sistema de salud, donde se confirma la necesidad de integrar este tipo de avance en el modelo de salud colombiano. Discusión: Los datos cualitativos complementarios del estudio central evidencian un mayor impacto en la calidad del cuidado a través de la relación terapéutica en el hogar. Conclusión: La díada requiere acompañamiento domiciliario para la autogestión de la enfermedad que esté basado en la confianza, la empatía, el empoderamiento y la gestión administrativa llevada a cabo por los gestores de casos.

Introdução: As pessoas com multimorbidade e seus cuidadores estão começando a ser reconhecidos como sujeitos emergentes dos sistemas de saúde. Na Colômbia, não há uma abordagem diferenciada para o atendimento dessa população, bem como para seu processo saúde-doença. Objetivo: Compreender a experiência de pessoas com multimorbidade e seus cuidadores após receberem uma intervenção de gerenciamento de casos. Métodos e materiais: Trata-se de um estudo qualitativo no qual foram entrevistados 33 participantes entre pessoas com multimorbidade e seus cuidadores que receberam intervenção com gerentes de caso, uma análise comparativa e o uso de ferramentas analíticas da teoria fundamentada. Resultados: Existem três dimensões que são: os atores onde a enfermagem se torna relevante como uma fonte confiável de cuidados; a Reunião de Cuidados, como um espaço criado dentro do gerenciamento de casos para manter a confiança e; Resultados no sistema de saúde, onde a necessidade de integrar esse tipo de surto no modelo de saúde colombiano é confirmada. Discussão: Dados complementares de evidências qualitativas do estudo central com maior impacto na qualidade do atendimento por meio da relação terapêutica no domicílio. Conclusão: A díade requer apoio domiciliar para o autogerenciamento da doença com base na confiança, empatia, empoderamento e gerenciamento administrativo realizado pelos gerentes de caso.