Evidence of validity and accuracy for the Mindful Self-Care Scale-Brief among family caregivers of people with cancer in Brazil: A cross-sectional study.

OBJECTIVES: This study aimed to evaluate the evidence of validity and accuracy for the Mindful Self-Care Scale-Brief (B-MSCS) in Brazil among family caregivers of people with cancer. METHODS: This was a cross-sectional study with a sample of 203 family caregivers of people with cancer. The instruments used in this study were the following: B-MSCS, Brief Resilience Scale, and Brief Scale for Spiritual/Religious Coping. Exploratory factor analysis was carried out using the principal axis factoring method and direct oblimin oblique rotation, and confirmatory factor analysis using the robust weighted least squares means and variance adjusted estimation method and GEOMIM oblique rotation. The internal consistency of the latent factors was measured using Cronbach's alpha coefficients. RESULTS: The 6-factor model showed good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. The results that can support arguments in favor of validity evidence based on internal structure for the B-MSCS-Brazilian version (BR) relate to a 19-item version which, grouped into 6 latent factors, explained 46.47% of the variance. The factor solution reproduced 79.2% of the theoretically expected structure and 5 items were excluded. The Cronbach's alpha coefficient of the factors in the B-MSCS-BR ranged from 0.58 to 0.84. Positive religious/spiritual coping had a direct association with the B-MSCS-BR factors, with the exception of the Physical Care factor (r = 0.033, p = 0.635). Negative spiritual/religious coping was inversely associated with the Mindful Relaxation (r = -0.160, p = 0.023), Supportive Relationships (r = -0.142, p = 0.043), and Mindful Awareness factors (r = -0.140, p = 0.045). There were no associations between the B-MSCS-BR factors and resilience. SIGNIFICANCE OF RESULTS: The findings reveal that the B-MSCS (19-item) is a valid, reliable, and culturally-appropriate instrument to examine the practice of mindful self-care by family caregivers of people with cancer in Brazil.

Development and Validation of an Auricular Acupuncture Protocol for the Management of Chemotherapy-Induced Nausea and Vomiting in Cancer Patients.

Auricular acupuncture (AA) has been used to manage chemotherapy-induced nausea and vomiting (CINV). However, the application of the technique varies widely among the clinical trials that test its effectiveness. The aim of the present study was to develop and clinically validate an AA protocol for the management of CINV in cancer patients. This study was carried out in two stages: (1) development of the AA protocol for the management of CINV and (2) clinical validation of the protocol. The content validity of the protocol was determined by a panel of specialists, with an agreement rate ranging from 85.7% to 100%. In the clinical validation, when administered to cancer patients, the protocol developed has been shown to reduce the incidence, frequency, severity, and length of nausea and vomiting following chemotherapy, as well as the severity of nausea and anticipatory nausea following chemotherapy. This protocol needs to be tested in future studies, including a pilot study with a sham group and a randomized clinical trial, in order to further evaluate its feasibility, acceptability, safety, and clinical usefulness for the management of CINV.

The expectations of metastatic cancer patients regarding palliative chemotherapy: A Brazilian-German qualitative study.

OBJECTIVE: To explore the expectations of Brazilian and German patients regarding metastatic cancer and palliative chemotherapy. METHODS: Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. The interviews were transcribed and analyzed using the thematic analysis approach to identify common themes. The sociodemographic data were collected using an instrument developed by the authors. RESULTS: A total of 48 patients participated in the study (58% were Brazilian and 42% were German). Of all participants, 35% were men and 65% were women. The participants' mean age was 41 years. The general idea captured from the interviewees' speech was that their diseases were curable or "while there is chemotherapy, there is life"; thus, the data analysis enabled the elaboration of the central theme, entitled "Mistaken expectations of metastatic cancer patients regarding palliative chemotherapy: While there is chemotherapy, there is life," with 5 subthemes, namely: (1) communication and expectations; (2) normal life; (3) the person behind the disease; (4) religiosity and spirituality; and (5) the fortitude to choose between continuing or discontinuing treatment. SIGNIFICANCE OF RESULTS: Regardless of cultural aspects, patients with metastatic cancer on palliative chemotherapy tend to believe in the healing potential of treatments. Dividing expectations only into curable or incurable is insufficient, as even patients who have acknowledged the incurability of their disease expect to live, as long as they remain under treatment as if the disease did not exist.

Spiritual Well-Being Among Users and Non-Users of Psychedelics: A Cross-Sectional Study.

This study evaluated the psychometric properties of the Spiritual Well-Being Scale (SWBS) in a Brazilian sample. We analyzed spiritual well-being, defined as existential well-being (EWB) and religious well-being (RWB), among individuals with varying religious and spiritual experiences, both users and non-users of psychedelics. The online cross-sectional survey was conducted in Brazil, from April to June 2022. The psychometric analyses demonstrated reliability and validity based on the internal structure and the relationship with satisfactory external variables concerning the RWB and EWB factors of the SWBS. Validity evidence was shown for both factors (RWB, EWB) with adequate reliability ratings. However, the RWB factor, which was entirely replicated, demonstrated the best group differentiation and internal consistency. Although both factors showed validity, the RWB factor exhibited superior psychometric indices for validity, group discrimination, and reliability. Regarding psychedelics, the association with RWB and EWB demonstrates a U-shaped pattern, as participants who never use these substances typically exhibit higher RWB and EWB indices, succeeded by frequent users. This finding underscores the need for additional studies to further explore the intricate interplay between psychedelics and spiritual well-being.

Translation, Cultural Adaptation, and Analysis of the Psychometric Properties of the Death Transcendence Scale for the Brazilian Context.

The study of the coping strategies used by humans to cope with their finitude has been the center of attention of several researchers throughout the history of psychology. The present study aimed to translate, culturally adapt, and validate the Death Transcendence Scale (DTS) for the Brazilian context. This was a cross-sectional study with a sample of 517 Brazilians. The European Organisation for Research and Treatment of Cancer - Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation process. The results of parallel analyses indicated the relevance of extracting up to five factors, which explained 58.23% of the scale's total variance. The Brazilian version of the DTS, with validity evidence, consisted of 21 items, considering that items 13, 17, 20, and 21 were excluded according to exploratory factor analysis. As far as we know, the version of the DTS developed in this study is the only instrument available in the Brazilian context that allows the measurement of a theory dedicated to understanding how humans cope with their finitude, beyond death denial.

Demoralization and spirituality in oncology: an integrative systematic review.

OBJECTIVE: To synthesize the scientific findings on demoralization and spirituality in the oncology context. METHODS: This is an integrative systematic review, in line with the PRISMA 2020 guidelines, as proposed by Whittemore and Knalf (2005). The MEDLINE via PubMed, Scopus, Web of Science, APA PsycNet, CINAHL, Cochrane Library, EMBASE, and LILACS databases were searched without limitations regarding language or year of publication. The studies were screened for inclusion according to the predefined eligibility criteria. Data extraction and evidence quality assessment were performed. RESULTS: Out of the 1587 articles evaluated, 10 studies were included in this review. In general, it was found that demoralization tends to increase with the proximity of death and seems to be inversely related to spirituality, with spiritual well-being being a protective factor against demoralization, while the non-fulfillment of spiritual needs is related to increased demoralization in people with cancer. Furthermore, even among caregivers of people with advanced cancer, demoralization seems to be associated, among other factors, with spiritual suffering. These results should be analyzed with caution, considering that the studies included in this review are all observational studies, which prevents establishing cause and effect relationships. CONCLUSIONS: Demoralization tends to increase with growing frailty and the proximity of death in people with cancer, and it seems to be inversely related to spirituality, both in these patients and in their caregivers.

Mindful Self-Care, Self-Compassion, and Resilience Among Palliative Care Providers During the COVID-19 Pandemic.

CONTEXT: Given the adverse impact of COVID-19 on the wellbeing of palliative care providers, there is a growing need to better understand protective variables, such as self-care, mindfulness and self-compassion, as they relate to resilience. OBJECTIVE: To investigate mindful self-care, self-compassion, and resilience as reported by palliative care providers during the COVID-19 pandemic. METHODS: Descriptive, cross-sectional survey. An electronic questionnaire captured data from validated instruments measuring each study variable, as well as participant demographics and perceived impacts of COVID-19 on professional quality of life. RESULTS: Positive, statistically significant correlations were found between mindful self-care, self-compassion, and resilience. These variables were also associated with greater satisfaction with professional life and perceived lessened impairment in physical and/or mental health due to a decrease in self-care activities stemming from altered routines during COVID-19. Those with higher resilience had worked in palliative care longer and also reported higher levels of self-compassion and mindful self-care, explaining 50% of variance. Self-compassion, satisfaction with professional life, and changes in self-care routine due to professional activities in the pandemic explained 44.3% of variance in mindful self-care. Self-compassion, female gender, and working as a frontline responder to the COVID-19 pandemic accounted for 35% variance in resilience levels. CONCLUSIONS: Results from this study extend the currently limited knowledge of self-care, mindfulness and self-compassion, as protective variables related to resilience in palliative care providers during the COVID-19 pandemic. Further longitudinal studies into causal effects on health and wellbeing over time are needed.

The Therapeutic Potential of Psychedelic-assisted Therapies for Symptom Control in Patients Diagnosed With Serious Illness: A Systematic Review.

CONTEXT: People affected by serious illness usually experience suffering in its various dimensions, not only in the physical but also in the psychosocial and spiritual aspects. The interest in psychedelic-assisted therapies as a potential new therapeutic modality has increased since evidence suggests a significant impact of their use on the outcomes of patients with serious illness. OBJECTIVES: To systematically review the available evidence on the effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness. METHODS: The protocol of this systematic review has been prepared according to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines. This review included randomized and non-randomized controlled trials published in peer-reviewed scientific journals. A comprehensive search for studies was carried out in the main scientific databases, including Web of Science, Scopus, Cochrane Library, PsycINFO, PubMed, CINAHL, and EMBASE. There were no limitations regarding the year or language of publication. RESULTS: The sample was composed of 20 studies. The results suggest positive effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness, with considerable safety of use. Most studies have been conducted with lysergic acid diethylamide, psilocybin, and N,N-dipropyltryptamine in cancer patients. The adverse effects reported were of physical and/or psychological nature and of mild to moderate intensity, transient, and self-resolutive. CONCLUSION: The evaluated evidence suggests positive effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness, especially regarding symptoms of psychological and spiritual nature.

Translation, cultural adaptation, and validation of the mindful self-care scale among Brazilian palliative care providers.

OBJECTIVE: This study aimed to translate, culturally adapt, and validate the Mindful Self-Care Scale (MSCS, 33-item) in a Brazilian hospice and palliative care context. METHOD: This was a cross-sectional study with a sample of 336 Brazilian hospice and palliative care providers. The European Organisation for Research and Treatment of Cancer - Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation process. Psychometric properties supporting the use of the MSCS were examined through confirmatory factor analysis (CFA) and correlation analysis with other instruments to assess congruence to related constructs (resilience and self-compassion). The reliability of the Brazilian-Portuguese version of the MSCS was assessed using Cronbach's α and composite reliability coefficients. RESULTS: The six-factor (33-item) model showed a good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. Further validity is evidenced in the significant, positive correlations found between the MSCS, and similar well-being constructs, namely the Self-Compassion and Resilience scales. SIGNIFICANCE OF RESULTS: The findings reveal that the MSCS (33-item) is a valid, reliable, and culturally appropriate instrument to examine the practice of mindful self-care by hospice and palliative care providers in Brazil. More broadly, it represents a promising instrument for future research into self-care practices and well-being among Brazilian healthcare providers.

Roleplay as an Educational Strategy in Palliative Care: A Systematic Integrative Review.

INTRODUCTION: Simulation activities, such as roleplay, have become established in undergraduate and graduate education in several subjects of healthcare. The objective of this study was to synthesize the evidence available in the literature on the use of roleplay as an educational strategy in palliative care. METHODS: Using the method proposed by Whittemore and Knafl, this integrative systematic review was carried out based on the following guiding question: "What is the available evidence in the literature on the use of roleplay as an educational strategy in the teaching of palliative care?" The databases used for the selection of articles were the following: Web of Science, Scopus, Cochrane Library, PubMed, CINAHL, EMBASE, and LILACS. There were no limitations regarding the year of publication or language. RESULTS: The articles (n = 34) were grouped into 3 categories, according to the purpose of roleplay use: 1) Use of roleplay as an educational strategy to teach communication in palliative care; 2) Use of roleplay as an educational strategy to teach the communication of bad news, and 3) Use of roleplay as an educational strategy to teach end-of-life care. CONCLUSION: Roleplay has been employed in the teaching of palliative care in order to develop skills related to communication and to the provision of end-of-life care. These educational activities have mainly been directed to healthcare students and professionals. Future investigations should further evaluate the efficacy of this teaching strategy, based on studies with more robust designs that allow the establishment of cause-and-effect relationships.

Escala para Avaliação de Náuseas e Vômitos Relacionados à Quimioterapia: Tradução e Adaptação Transcultural / Scale for the Assessment of Chemotherpy-Induced Nausea and Vomits: Translation and Transcultural Adaptation / Escala de Evaluación de Náuseas y Vómitos Relacionados con la Quimioterapia: Traducción y Adaptación Cultural

Introdução: Náuseas e vômitos induzidos por quimioterapia acometem cerca de 70-80% dos pacientes com câncer. Assim, é importante a utilização de um instrumento para avaliar melhor esses sintomas, visando a um tratamento mais adequado. Objetivo: Traduzir e adaptar culturalmente a escala Morrow Assessment of Nausea and Emesis para o contexto brasileiro. Método: Estudo correlacional do tipo survey, com tradução e adaptação cultural da escala segundo o protocolo da European Organization for Research and Treatment of Cancer ­ Quality of Life Group (EORTC-QLG). A amostra foi constituída por 160 pacientes em tratamento quimioterápico em uma clínica de oncologia. No processo de validação, realizaram-se análises de correlação multimétodos entre os itens da escala Morrow Assessment of Nausea and Emesis e os escores das escalas visuais numéricas de náusea e vômito com nível de p<0,05. Resultados: O autor da escala autorizou a tradução. A escala Morrow Assessment of Nausea and Emesis e as escalas numéricas apresentaram correlações significativas (p<0,01; p<0,05), sendo que os itens que apresentaram correlação mais forte das escalas numéricas foram os que se referiram à avaliação de náusea e vômito pós-quimioterapia. Já os itens destinados à avaliação desses sintomas no momento pré-quimioterapia e ao uso da medicação antiemética e sua eficácia apresentaram associações fracas com as escalas numéricas. Conclusão: A escala Morrow Assessment of Nausea and Emesisapresentou-se adequada para a avaliação de náuseas e vômitos induzidos por quimioterapia no contexto brasileiro

Introduction: Chemotherapy-induced nausea and vomiting affects nearly 70-80% of patients with cancer. To achieve a better treatment it is important to utilize an adequate instrument to assess these symptoms. Objective:To translate and culturally adapt the Morrow Assessment of Nausea and Emesis Scale to the Brazilian context. Method: Survey and correlational study, with the translation and cultural adaptation of the scale according to the protocol of the European Organization for Research and Treatment of Cancer ­ Quality of Life Group (EORTC-QLG). The sample consisted of 160 patients undergoing chemotherapy treatment in an oncology clinic. In the validation process, multimethod correlation analyses were carried out among the items of the Morrow Assessment of Nausea and Emesis Scale items and the scores of the numerical visual scales of nausea and vomits at the level of p<0.05. Results: The author of the scale approved the translation process. The Morrow Assessment of Nausea and Emesis scale and the numerical scales presented significant correlations (p<0.01; p<0.05), considering that the items presenting stronger correlation with the numerical scales were those addressing post-chemotherapy assessment of nausea and vomit. On the other hand, the items for pre-chemotherapy assessment of these symptoms and use of the antiemetic drugs and their efficacy presented weak associations with the numerical scales. Conclusion: The Morrow Assessment of Nausea and Emesis scale was adequate for the assessment of chemotherapy-induced nausea and vomiting in the Brazilian context

Introducción: Las náuseas y vómitos inducidos por la quimioterapia afectan aproximadamente al 70-80% de los pacientes con cáncer. Por lo tanto, es importante utilizar un instrumento para evaluar mejor estos síntomas, con el objetivo de un tratamiento más adecuado. Objetivo: Traducir y adaptar culturalmente la escala de Morrow Assessment of Nausea and Emesisal contexto brasileño. Método: Estudio correlativo del tipo de encuesta, con la traducción y adaptación cultural de la escala según el protocolo de la European Organization for Research and Treatment of Cancer ­ Quality of Life Group (EORTC-QLG). La muestra consistió en 160 pacientes sometidos a quimioterapia en una clínica oncológica. En el proceso de validación, se realizaron análisis de correlación multimétodos entre los elementos de la escala de Morrow Assessment of Nausea and Emesis y las puntuaciones de las escalas visuales numéricas de náuseas y vómitos con nivel de p<0,05. Resultados: El autor de la escala autorizó la traducción. La Morrow Assessment of Nausea and Emesis y las escalas numéricas mostraron correlaciones significativas (p<0,01; p<0,05), y los elementos que presentaron una correlación más fuerte de las escalas numéricas fueron los que se refirieron a la evaluación de las náuseas y los vómitos después de la quimioterapia. Por otro lado, los elementos destinados a la evaluación de estos síntomas en el momento anterior a la quimioterapia y el uso de medicamentos antieméticos y su eficacia presentaron asociaciones débiles con escalas numéricas. Conclusión: La Morrow Assessment of Nausea and Emesis fue adecuada para la evaluación de náuseas y vómitos inducidos por quimioterapia en el contexto brasileño

Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study.

OBJECTIVES: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. METHODS: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. RESULTS: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". CONCLUSIONS: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study.

OBJECTIVES: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. METHODS: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. RESULTS: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". CONCLUSIONS: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

Quality of life, self-compassion and mindfulness in cancer patients undergoing chemotherapy: A cross-sectional study.

PURPOSE: We investigated whether self-compassion and mindfulness are associated with quality of life in patients undergoing antineoplastic chemotherapy. METHODS: A cross-sectional survey of 183 patients (100% response rate) undergoing chemotherapy was conducted at a Brazilian hospital between August and December 2019. A questionnaire was administered by the research team, collecting clinical and demographic data as well as responses to the Self-compassion scale, Mindful Attention Awareness Scale, and the Functional Assessment of Cancer Therapy-General instrument. Data analysis comprised descriptive and inferential statistics, with multiple regression and Spearman's rank-order correlation testing for associations between quality of life, self-compassion and mindfulness. RESULTS: Mean scores for the study variables were 4.23 (SD = 0.63) for self-compassion, 69.05 (SD = 13.27) for mindfulness, and 80.25 (SD = 12.62) for quality of life. Significant positive correlations were observed between quality of life and self-compassion (r = 0.466, p < 0.001), as well as for quality of life and mindfulness (r = 0.325, p < 0.001). Higher levels of self-compassion and mindfulness were associated with better quality of life. CONCLUSIONS: This research suggests merit in further studies of self-compassion and mindfulness either as predictor variables or for direct causal effect on quality of life in cancer patients undergoing antineoplastic chemotherapy. We recommend that future studies incorporate an intervention and experimental design.

Professional characteristics and the prevalence of advance directives among palliative care professionals: A cross-sectional study.

OBJECTIVE: This study aimed to investigate the association between professional characteristics and the prevalence of advance directives among palliative care professionals. METHODS: This is a descriptive cross-sectional study. A diverse sample of 327 healthcare professionals completed an online survey investigating demographic variables, length of time working in palliative care, post-graduate qualifications in palliative care, and development of their own advance directives. RESULTS: The prevalence of advance directives among professionals working in palliative care was associated with factors such as higher academic qualifications, holding a post-graduate qualification in palliative care, and working in palliative care for a longer time. Furthermore, psychologists were most likely to have registered their own advance directives, compared with other healthcare professionals. SIGNIFICANCE OF RESULTS: Post-graduate palliative care education and professional experience in this area appear to be important factors associated with palliative care professionals writing of their own advance directives. However, our study suggests that just being involved in or familiar with the context of palliative and end-of-life care does not guarantee that health professionals register their advance directives.

Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study / Sobrecarga y apoyo social entre cuidadores informales de personas en diálisis renal: estudio misto / Sobrecarga e apoio social entre cuidadores informais de pessoas em diálise renal: estudo misto

ABSTRACT Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

RESUMEN Objetivos: analizar sobrecarga y apoyo social de cuidadores informales de personas en diálisis renal. Métodos: estudio misto, fundamentado en Teoría de Estrés y de la Sobrecarga, con instrumentos de caracterización sociodemográfica, escala de apoyo social del Medical Outcomes Study, Escala de Zarit y cuestiones orientadoras. Análisis de datos por inferencia estadística y temática. Resultados: evaluaron 55 cuidadores, mayoría del sexo femenino, edad de 31 a 50 años, casados y con tiempo de dedicación al cuidado superior a tres años. Observado alto nivel de apoyo afectivo y material y ligera sobrecarga del cuidador. Construido como tema central de los discursos: "Experiencias del cuidador: entre el peso de la responsabilidad y la búsqueda por sentido". Conclusiones: evidenciado ligera sobrecarga entre participantes, alta mediana en dimensiones de apoyo afectivo y emocional, relación entre interacción social positiva y sobrecarga de los cuidadores, además de la dualidad entre la responsabilidad y el sentido del cuidar.

RESUMO Objetivos: analisar a sobrecarga e o apoio social de cuidadores informais de pessoas em diálise renal. Métodos: estudo misto, fundamentado na Teoria de Estresse e da Sobrecarga, com instrumentos de caracterização sociodemográfica, escala de apoio social do Medical Outcomes Study, Escala de Sobrecarga de Zarit e questões norteadoras. Análise dos dados por inferência estatística e temática. Resultados: avaliaram-se 55 cuidadores, maioria do sexo feminino, idade de 31 a 50 anos, casados e com tempo de dedicação ao cuidado superior a três anos. Observou-se alto nível de apoio afetivo e material e ligeira sobrecarga do cuidador. Construiu-se como tema central dos discursos: "Vivências do cuidador: entre o peso da responsabilidade e a busca por sentido". Conclusões: evidenciou-se ligeira sobrecarga entre os participantes, alta mediana nas dimensões de apoio afetivo e emocional, relação entre interação social positiva e sobrecarga dos cuidadores, além da dualidade entre a responsabilidade e o sentido do cuidar.

[RETRACTED ARTICLE] Burden and social support in informal caregivers of people undergoing kidney dialysis: a mixed study / [ARTÍCULO RETRACTADO] Sobrecarga y apoyo social entre cuidadores informales de personas en diálisis renal: estudio misto / [ARTIGO RETRATADO] Sobrecarga e apoio social entre cuidadores informais de pessoas em diálise renal: estudo misto

ABSTRACT Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.

RESUMEN Objetivos: analizar sobrecarga y apoyo social de cuidadores informales de personas en diálisis renal. Métodos: estudio misto, fundamentado en Teoría de Estrés y de la Sobrecarga, con instrumentos de caracterización sociodemográfica, escala de apoyo social del Medical Outcomes Study, Escala de Zarit y cuestiones orientadoras. Análisis de datos por inferencia estadística y temática. Resultados: evaluaron 55 cuidadores, mayoría del sexo femenino, edad de 31 a 50 años, casados y con tiempo de dedicación al cuidado superior a tres años. Observado alto nivel de apoyo afectivo y material y ligera sobrecarga del cuidador. Construido como tema central de los discursos: "Experiencias del cuidador: entre el peso de la responsabilidad y la búsqueda por sentido". Conclusiones: evidenciado ligera sobrecarga entre participantes, alta mediana en dimensiones de apoyo afectivo y emocional, relación entre interacción social positiva y sobrecarga de los cuidadores, además de la dualidad entre la responsabilidad y el sentido del cuidar.

RESUMO Objetivos: analisar a sobrecarga e o apoio social de cuidadores informais de pessoas em diálise renal. Métodos: estudo misto, fundamentado na Teoria de Estresse e da Sobrecarga, com instrumentos de caracterização sociodemográfica, escala de apoio social do Medical Outcomes Study, Escala de Sobrecarga de Zarit e questões norteadoras. Análise dos dados por inferência estatística e temática. Resultados: avaliaram-se 55 cuidadores, maioria do sexo feminino, idade de 31 a 50 anos, casados e com tempo de dedicação ao cuidado superior a três anos. Observou-se alto nível de apoio afetivo e material e ligeira sobrecarga do cuidador. Construiu-se como tema central dos discursos: "Vivências do cuidador: entre o peso da responsabilidade e a busca por sentido". Conclusões: evidenciou-se ligeira sobrecarga entre os participantes, alta mediana nas dimensões de apoio afetivo e emocional, relação entre interação social positiva e sobrecarga dos cuidadores, além da dualidade entre a responsabilidade e o sentido do cuidar.

Translation, cultural adaptation, and validation of the Brazilian Portuguese version of the End-of-Life Professional Caregiver Survey.

OBJECTIVES: The aim of this study was to translate, culturally adapt, and psychometrically evaluate the Brazilian version of the "End-of-Life Professional Caregiver Survey" (BR-EPCS). METHOD: This is an observational cross-sectional study. The sample was composed of 285 Brazilian healthcare professionals who work or worked in the palliative care area. A minimum number of 280 participants were established, following the recommendation of 10 subjects for each instrument item. The European Organisation for Research and Treatment of Cancer - Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation. For the precise/reliable evaluation of factors measured by the BR-EPCS, Cronbach's alpha (α) and composite reliability coefficients were used. The factorial analyses were made by means of the exploratory structural equation modeling methods and confirmatory factor analysis. We have conducted a multiple linear regression analysis to evaluate the sociodemographic variables' capabilities in the result prediction measured by BR-EPCS factors. RESULTS: The factorial analysis showed the relevance of two factors: Factor 1 - "Given care effectiveness" (18 items; Cronbach's α = 0.94; Composite Reliability = 0.95) and Factor 2 - "Mourning and ethical and cultural values" (10 items; Cronbach's α = 0.89; Composite Reliability = 0.88). Multiple linear regression analyses revealed that the working time, sex, palliative care training, and its own advance directives are predictors of the constructs assessed by the BR-EPCS. SIGNIFICANCE OF RESULTS: The BR-EPCS is a reliable, valid, and culturally appropriate tool to identify the educational needs of healthcare professionals who work with palliative care. This instrument can be used for educational and research reasons.

Cuidados paliativos na atenção primária à saúde: produção científica de dissertações e teses no cenário brasileiro / Palliative care in primary health care: scientific production of theses and dissertations in the brazilian framework / Atención paliativa en la atención primaria de salud: producción científica de disertaciones y estas en el escenario brasileño

Objective: The study's main purpose has been to scrutinize the scientific production of Brazilian stricto sensu Postgraduate Programs addressing Palliative Care in Primary Health Care. Methods: It is a bibliometric literature review that was performed through searching Theses and Dissertations, formally presented from 2006 to 2017, available on Public Domain Portal, Biblioteca Digital Brasileira de Teses e Dissertações (BDTD), Theses and Dissertations Database from USP, UFRJ and UFSC, as well as Theses and Dissertations from the CAPES Portal. Results: The sample consisted of 33 works of which 23 were Dissertations and 10 Theses. The found studies were mostly Dissertations, which were formally presented in 2015 and from the Universidade de São Paulo (USP). Such researches were carried out in Family Health Strategy Programs and held health professionals as research subjects. Conclusion: Although incipient, the scientific production of Theses and Dissertations by Brazilian stricto sensu Postgraduate Programs can still contribute to the discussion amongst managers and health professionals vis-à-vis the development of Palliative Care in Brazilian Primary Health Care

Objetivo: Analisar a produção científica de Programas de Pós-graduação stricto sensu brasileiros sobre Cuidados Paliativos na Atenção Primária à Saúde. Método: Revisão bibliométrica, realizada por meio da busca de Dissertações e Teses, defendidas entre 2006 e 2017, disponíveis nas bases de dados Portal Domínio Público, BDTD, Banco de Teses e Dissertações da USP, UFRJ, UFSC e Portal de Teses e Dissertações da CAPES. Resultados: A amostra foi constituída por 33 trabalhos, sendo 23 Dissertações e 10 Teses. Os estudos encontrados são, em sua maioria, dissertações defendidas em 2015, provenientes da USP, realizadas em Estratégias de Saúde da Família (ESF), tendo como sujeitos de pesquisa os profissionais de saúde. Conclusão: Ainda que incipiente, a produção científica de dissertações e teses produzidas pelos Programas de Pós-graduação stricto sensu pode colaborar para a discussão, entre gestores e profissionais de saúde, sobre o desenvolvimento dos Cuidados Paliativos na Atenção Primária de Saúde brasileira

Objetivo: Analizar la producción de conocimiento de los programas de posgrado stricto sensu brasileños sobre Cuidados Paliativos en la Atención Primaria de Salud. Método: Revisión bibliométrica realizada por medio de búsqueda de disertaciones y tesis, defendidas entre 2006 y 2017, disponibles en las bases de datos Portal Dominio Público, BDTD, Banco de tesis y disertaciones de la USP, UFRJ, UFSC y Portal de Tesis y Disertaciones de la CAPES. Resultados: La muestra fue constituida por 33 trabajos siendo 23 disertaciones y 10 tesis. Los estudios encontrados son en su mayoría disertaciones, defendidas en 2015, provenientes de la USP, realizadas en Estrategias de Salud de la Familia (ESF), teniendo como sujetos de investigación los profesionales de salud. Conclusion: Aún que incipiente, la producción de científico de disertaciones y tesis por los programas de posgrado stricto sensu pueden colaborar para la discusión, entre gestores y profesionales de salud, sobre el desarrollo de los CP en la APS brasileña