[Home and Ambulatory Artificial Nutrition (NADYA) Group report: home parenteral nutrition in Spain, 2019]. / Nutrición parenteral domiciliaria en España, 2019: informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA.

INTRODUCTION: Aim: to communicate the home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.com) for the year 2019. Material and methods: a descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1 to December 31, 2019. Results: a total of 283 patients (51.9 % women), 31 children, and 252 adults from 47 Spanish hospitals were registered, which represents a prevalence rate of 6.01 patients per million inhabitants for year 2019. The most frequent diagnosis in adults was "palliative oncological" and "others" (21.0 %). In children, it was Hirschsprung's disease together with necrotizing enterocolitis, alterations in intestinal motility, and chronic intestinal pseudo-obstruction, with 4 cases each (12.9 %). The first reason for the indication was short-bowel syndrome in both children (51.6 %) and adults (37.3 %). The most used type of catheter was tunnelled both in children (75.9 %) and in adults (40.8 %). Sixty-eight episodes ended, all in adults, and the most frequent cause was death (54.4 %); 38.2 % were switched to oral. Conclusions: the number of collaborating centers and professionals in the NADYA registry is increasing. The main indications and reasons for HPN termination remain stable.

INTRODUCCIÓN: Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadya-senpe.com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue "oncológico paliativo" y "otros" (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD.

Home-Based Telemental Health: A Proposed Privacy and Safety Protocol and Tool.

Objectives: To describe the development of a protocol and practical tool for the safe delivery of telemental health (TMH) services to the home. The COVID-19 pandemic forced providers to rapidly transition their outpatient practices to home-based TMH (HB-TMH) without existing protocols or tools to guide them. This experience underscored the need for a standardized privacy and safety tool as HB-TMH is expected to continue as a resource during future crises as well as to become a component of the routine mental health care landscape. Methods: The authors represent a subset of the Child and Adolescent Psychiatry Telemental Health Consortium. They met weekly through videoconferencing to review published safety standards of care, existing TMH guidelines for clinic-based and home-based services, and their own institutional protocols. They agreed on three domains foundational to the delivery of HB-TMH: environmental safety, clinical safety, and disposition planning. Through multiple iterations, they agreed upon a final Privacy and Safety Protocol for HB-TMH. The protocol was then operationalized into the Privacy and Safety Assessment Tool (PSA Tool) based on two keystone medical safety constructs: the World Health Organization (WHO) Surgical Safety Checklist/Time-Out and the Checklist Manifesto.Results: The PSA Tool comprised four modules: (1) Screening for Safety for HB-TMH; (2) Assessment for Safety During the HB-TMH Initial Visit; (3) End of the Initial Visit and Disposition Planning; and (4) the TMH Time-Out and Reassessment during subsequent visits. A sample workflow guides implementation. Conclusions: The Privacy and Safety Protocol and PSA Tool aim to prepare providers for the private and safe delivery of HB-TMH. Its modular format can be adapted to each site's resources. Going forward, the PSA Tool should help to facilitate the integration of HB-TMH into the routine mental health care landscape.

Patient-Directed Home Drain Removal in Head and Neck Surgery.

OBJECTIVES/HYPOTHESIS: The purpose of this study was to evaluate the efficacy and safety of at home drain removal in head and neck surgery patients. METHODS: The study population included patients who underwent head and neck surgery at an academic tertiary care center between February 2020 and November 2020 and were discharged with one to four drains with instructions for home removal. Prior to discharge, patients received thorough drain removal education. Patients were prospectively followed to evaluate for associated outcomes. RESULTS: One hundred patients were evaluated in the study. There was record for ninety-seven patients receiving education at discharge. The most common methods of education were face-to-face education and written instructions with educational video link provided. Of 123 drains upon discharge, 110 drains (89.4%) were removed at home while 13 (10.6%) were removed in office. Most drains were located in the neck (86.4%). There was one seroma, two hematomas, two drain site infections, and five ED visits; however, none of these complications were directly associated with the action of drain removal at home. Calculated cost savings for travel and lost wages was $259.82 per round trip saved. CONCLUSIONS: The results demonstrate that home drain removal can provide a safe and efficacious option for patients following head and neck surgery. This approach was safe and associated with patient cost savings and better utilization of provider's time. Furthermore, patients and healthcare providers avoided additional in-person encounters and exposures during the COVID-19 pandemic. Our findings warrant further investigation into cost savings and formal patient satisfaction associated with home drain removal. LEVEL OF EVIDENCE: 4 Laryngoscope, 131:2471-2477, 2021.

Temporal Trends and Sex Differences in Intensity of Healthcare at the End of Life in Adults With Heart Failure.

Background Patients with chronic disease prefer an adequately supported death at home, but often die in the hospital. We assessed temporal trends and sex differences in healthcare intensity and location of death among decedents with heart failure. Methods and Results This was a retrospective cohort study of adults with heart failure who died between April 1, 2004 and March 31, 2017 in Ontario, Canada. We used population-based administrative databases to assess healthcare utilization during the last 6 months of life and applied multilevel multivariable logistic regression to assess whether sex was independently associated with location of death. Among 396 024 decedents with heart failure, mean (SD) age was 81.8 (10.7) years, 51.5% were women, and 53.4% had in-hospital deaths. From 2004 to 2016, there was an increase in patients receiving mechanical ventilation (15.1%-19.6%), hemodialysis (5.2%-6.8%), and cardiac revascularization (1.7%-2.3%). Relative to men, women spent fewer days in a hospital (mean, 16.4 versus 18.3; mean difference, 1.9; 95% CI, 1.7-2.0; P<0.001) and in an intensive care unit (mean, 2.1 versus 3.0; mean difference, 0.9; 95% CI, 0.8-0.9; P<0.001); and less commonly received mechanical ventilation (15.5% versus 20.8%; P<0.001); hemodialysis (4.8% versus 7.7%; P<0.001); or cardiac catheterization (2.8% versus 4.6%; P<0.001). Female sex was independently associated with lower odds of in-hospital death (odds ratio, 0.88; 95% CI, 0.87-0.89). Mean (SD) 6-month direct healthcare cost was greater for in-hospital ($52 349 [$55 649]) than out-of-hospital ($35 998 [$31 900]) death. Conclusions Among decedents with heart failure, invasive care in the last 6 months increased in prevalence over time but was less common in women, who had lower odds of dying in a hospital.

Validation of the Palliative Prognostic Index, Performance Status-Based Palliative Prognostic Index and Chinese Prognostic Scale in a home palliative care setting for patients with advanced cancer in China.

BACKGROUND: The predictive value of the prognostic tool for patients with advanced cancer is uncertain in mainland China, especially in the home-based palliative care (HPC) setting. This study aimed to compare the accuracy of the Palliative Prognostic Index (PPI), the Performance Status-Based Palliative Prognostic Index (PS-PPI), and the Chinese Prognosis Scale (ChPS) for patients with advanced cancer in the HPC setting in mainland China. METHODS: Patients with advanced cancer admitted to the hospice center of Yuebei People's Hospital between January 2014 and December 2018 were retrospectively calculated the scores according to the three prognostic tools. The Kaplan-Meier method was used to compare survival times among different risk groups. Receiver operating characteristic curve analysis was used to assess the predictive value. The accuracy of 21-, 42- and 90-day survival was compared among the three prognostic tools. RESULTS: A total of 1863 patients were included. Survival time among the risk groups of all prognostic tools was significantly different from each other except for the PPI. The AUROC of the ChPS was significantly higher than that of the PPI and PS-PPI for 7-, 14, 21-, 42-, 90-, 120-, 150- and 180-day survival (P < 0.05). The AUROC of the PPI and PS-PPI were not significantly different from each other (P > 0.05). CONCLUSIONS: The ChPS is more suitable than the PPI and PS-PPI for advanced cancer patients in the HPC setting. More researches are needed to verify the predictive value of the ChPS, PPI, and PS-PPI in the HPC setting in the future.

Family experiences with palliative care for children at home: a systematic literature review.

BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.

Advancing the science of population-based measures of home-time.

The "home time" measure is gaining appeal in evaluating outcomes for multiple patient populations including post-surgery or intervention and the last 6 months of life. Advancing the science of home time measures will require obtaining the perspectives of patients and caregivers to arrive at a population-based measure of quality of life. Additionally, measure development requires considerations of what care settings denote time away from home, observation period, and thresholds that are clinically significant. We explore examples and challenges from current research and our own experience. Being able to advance such measures could also inform payment models and policy design.

The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients.

BACKGROUND: Little is known about the impact of COVID-19 on patients with cystic fibrosis (CF), despite being considered a high-risk group. This study explored the early impact of COVID-19 on the emotional well-being of patients and self-reported changes in their home therapy since the start of the pandemic. METHODS: Adult patients with CF, lung-transplanted (LTX) CF patients and parents of children with CF completed an online questionnaire, securely linked to their medical files. The questionnaire covered the emotional impact of the pandemic, changes in CF and LTX treatment, changes in health-protecting behaviours and CF-related concerns, and their perception of their COVID-19 status. RESULTS: The response rate was 63% (80 CF, 66 LTX and 73 parents). A wide range of illness severity was included. None of the respondents had contracted COVID-19 and all strictly followed the social distancing rules. There was evident psychological impact, with many reporting increased stress, fear and worry about CF and the future. Changes in treatment were positive, including more physiotherapy for adults and better-quality nebulizing. Changes in routine were reported, such as different treatment timing. Adult patients and parents had cancelled their CF appointments more often since the start of the pandemic. CONCLUSIONS: The initial psychological impact of COVID-19 was evident. The impact on home treatment was reassuringly small. Psychological care is needed for patients suffering prolonged psychological impact, and CF teams need to contextualize the information that patients and parents receive from the media and support them to balance the perceived risk with true risk.

Trends in Place of Death for Cardiovascular Mortality Related to Heart Failure in the United States From 2003 to 2017.

BACKGROUND: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined. METHODS: We analyzed data from the Centers for Disease Control and Prevention's Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race. RESULTS: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75-1.82]) or at home (odds ratio, 1.55 [1.53-1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97-1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58-0.64]). CONCLUSIONS: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.

Improvement of Constipation Symptoms in an Older Adult Patient by Defecation Care Based on Using a Handheld Ultrasound Device in Home Care Settings: A Case Report.

BACKGROUND: Although previous studies have demonstrated the ability of ultrasound to detect stool in the colon and rectum, the clinical utility of evaluating constipation via ultrasonic imaging by nurses has not been determined. In this case report, we observed fecal retention, assessed the presence of constipation, and performed defecation care in an older adult patient in a home care setting in a city near the metropolitan area in Japan. CASE: An 85-year-old male with advanced stage prostate cancer and multiple metastases was diagnosed with fecal impaction via digital rectal examination and evaluation of stool consistency. He was managed by regular digital evacuation of stool, but ultrasonic imaging indicated constipation with fecal retention in both the rectum and the colon despite this bowel evacuation program. When faced with this situation, we advocate a bowel management program that considers both intestinal elimination dysfunction and fecal transport dysfunction. Based on ultrasonic imaging, stool consistency was altered by promoting water intake, and we promoted self-defecation by asking the patient to attempt to move his bowels (regardless of cues to defecation) by sitting on the toilet every morning. As a result, the number of weekly enemas and digital dis-impaction episodes decreased while the number of spontaneous defecations increased. CONCLUSION: This case report demonstrated that ultrasonography improved bowel management in this patient with clinically severe chronic constipation.

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study.

BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

The PERSONS score: A new tool for cancer patients' symptom assessment in simultaneous care and home care settings.

BACKGROUND: Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists. PATIENTS AND METHODS: The aim of this prospective study was to evaluate the PERSONS score, in both "simultaneous care" and "supportive care" settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator. RESULTS: From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49-0.70) and 0.82 (0.75-0.87), respectively, for the home care patients and 0.73 (0.62-0.81) and 0.89 (0.83-0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively. CONCLUSIONS: The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.

Leadership in specialist palliative home care teams: A qualitative study.

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Produção científica em cuidados paliativos e terapia ocupacional: revisão de escopo / Scientific production in palliative care and occupational therapy: a scoping review / Producción científica en cuidados paliativos y terapia ocupacional: revisión de alcance

Objective: The study's main purpose has been to characterize the scientific production addressing palliative care and occupational therapy published in peer-reviewed open access journals available online, as well as identify the approaches used by such publications selected for this work. Methods: This is a scoping review, which performed a thorough search in the following databases: MEDLINE, LILACS, IBECS and INDEX PSI. Furthermore, it considered articles published over the period from 2000 to July 2019, eventually obtaining a sample of 29 studies. Results: The analysis resulted in six categories that addressed subjects on the profile, role, interventions, difficulties, information technology and home care of the occupational therapy in palliative care, where a predominance of English written articles was observed. Conclusion: The study findings have revealed rather small evidences on the occupational therapists' profile and their big challenges - such as updates related to the current practice and the educational curriculum. Hence, it is essential to promote new investigations aimed at demonstrating the effectiveness of interventions focused on improving the occupational therapists' performance and the patient's quality of life

Objetivo: Caracterizar a produção científica sobre os cuidados paliativos e a terapia ocupacional publicada em periódicos online, e identificar os enfoques abordados nas publicações selecionadas para o estudo. Método: Trata-se de uma revisão de escopo, cuja pesquisa foi realizada nas bases de dados MEDLINE, LILACS, IBECS e INDEX PSI, em artigos publicados entre 2000 e julho de 2019, cujas amostras contemplaram 29 estudos. Resultado: Da análise, resultaram seis categorias que contemplam temas sobre o perfil, papel, intervenções, dificuldades, tecnologia da informação e atenção domiciliar da terapia ocupacional em cuidados paliativos, com predominância de artigos em inglês. Conclusão: Os achados desta pesquisa revelam poucas evidências sobre o perfil dos terapeutas ocupacionais e grandes desafios ­ como atualizações na prática atual e no currículo educacional, sendo fundamental o desenvolvimento de novas pesquisas voltadas a demonstrar a eficácia das intervenções, à melhoria do desempenho ocupacional e à qualidade de vida do paciente

Objetivo: Caracterizar la producción científica sobre los cuidados paliativos y la terapia ocupacional publicada en periódicos online y identificar las perspectivas abordadas en las publicaciones seleccionadas para el estudio. Método: Se trata de una revisión de alcance, cuya investigación fue realizada en las bases de datos MEDLINE, LILACS, IBECS y INDEX PSI, en artículos publicados entre 2000 y julio de 2019, de cuales las muestras contemplaron 29 estudios. Resultado: Del análisis, resultaron seis categorías que contemplan temas sobre el perfil, papel, intervenciones, dificultades, tecnología de la información y atención domiciliar de la terapia ocupacional en cuidados paliativos, con predominancia de artículos en inglés. Conclusión: Los hallados de esta investigación revelan pocas evidencias sobre el perfil de los terapeutas ocupacionales y grandes desafíos ­ como actualizaciones en la práctica actual y en el currículo educacional, siendo fundamental el desarrollo de nuevas pesquisas destinadas a demostrar la eficacia de las intervenciones dirigidas a la mejoría del desempeño ocupacional y a la calidad de vida del paciente

Cocreation as a Caring Phenomenon: Nurses' Experiences in Palliative Home Care.

A new concept in palliative care, cocreation, appears to be a part of caring in nursing but has not yet been explored as a caring phenomenon. The aim was to, from a caring science perspective, explore how cocreation can be experienced as a phenomenon by nurses working in palliative home care. A hermeneutical approach and thematic analysis were used. The material consisted of texts from in-depth interviews with 12 nurses in a home care context. Informed consent regarding study participation and the storage and handling of data for research purposes were sought from participants. One main theme and 4 subthemes emerged. Cocreation can be viewed as an essential part of caring and being involved in patients' health and holistic care is a profound endeavor. Further research should focus on illuminating cocreation from patients' perspectives.

Nursing practice in home care: the mediation of care by reflexivity / La práctica de enfermería en la atención a domicilio: la mediación del cuidado por la reflexividad / Prática da enfermeira na atenção domiciliar: o cuidado mediado pela reflexividade

ABSTRACT Objective: To analyze the practice of nurses in home care, considering the mediation of care by reflexivity. Method: Unique, qualitative case study, anchored in the dialectical framework. The participants were 13 nurses who work in home care in Minas Gerais. Data were obtained by participant observation and interview, and submitted to critical discourse analysis. Results: Nursing care at home involves the repetitions of everyday actions and a degree of unpredictability. Reflexivity, according to Schön's theoretical framework, emerges as a component of professional practice that leads to the practice of care as a continuous assessment of work, and also to reflection on the challenges imposed by conflicting situations. Reflexivity also stems from professionals' search for improvements in their practices. Final considerations: We identified the presence of actions and knowledge mobilized by the reflexivity of the nurse in the home care setting. The following were the elements of this reflexive practice: knowing-in-action, reflection-in-action and reflection reflection-in-action.

RESUMEN Objetivo: Analizar la práctica de enfermería en la atención a domicilio, desde la mediación del cuidado por la reflexividad. Método: Estudio de caso único, cualitativo, en base de la dialéctica referencial. Han participado 13 enfermeras que trabajan en la atención domiciliaria en Minas Gerais, Brasil. En la recolección de datos se utilizó la observación participante y las entrevistas, pasando a un análisis crítico del discurso. Resultados: El cuidado de enfermería a domicilio consiste en repeticiones de acciones cotidianas e imprevisibilidad. La reflexividad, desde el marco teórico de Schön, emerge como un componente de la práctica profesional que conduce al logro del cuidado en una evaluación continua del trabajo y la reflexión sobre los desafíos que enfrentan con situaciones conflictivas y la búsqueda de la mejora en sus prácticas. Consideraciones finales: Se identificaron la presencia de quehaceres y saberes influidos por la reflexividad en la enfermería a domicilio, y los siguientes elementos de la práctica reflexiva: el conocimiento-en-la-acción, la reflexión-en-la-acción y su reflexión.

RESUMO Objetivo: Analisar a prática de enfermeiras na atenção domiciliar, considerando a realização do cuidado mediado pela reflexividade. Método: Estudo de caso único, qualitativo, ancorado no referencial dialético. Participaram 13 enfermeiras que atuam na atenção domiciliar em Minas Gerais. Os dados foram obtidos por observação participante e entrevista e submetidos à análise de discurso crítica. Resultados: O cuidado da enfermeira no domicílio é composto por repetições de ações cotidianas e pela imprevisibilidade. A reflexividade, segundo referencial teórico de Schön, emerge como um componente da prática profissional que leva à realização do cuidado em uma avaliação contínua do trabalho e da reflexão acerca dos desafios diante de situações conflitantes e da busca de melhoria em suas práticas. Considerações finais: Identificou-se a presença de fazeres e saberes mobilizados pela reflexividade da enfermeira no domicílio, e os seguintes elementos de uma prática reflexiva: o conhecer-na-ação, a reflexão-na-ação e a reflexão sobre este último.

The day after: correlates of patient-reported outcomes with actigraphy-assessed sleep in cancer patients at home (inCASA project).

Subjective sleep assessment in cancer patients poorly correlates with actigraphy parameters that usually encompass multiple nights. We aimed to determine the objective actigraphy measures that best correlated with subjective sleep ratings on a night-by-night basis in cancer patients. Thirty-one cancer patients daily self-rated sleep disturbances using the single dedicated item of the MD Anderson Symptom Inventory (0-10 scale) with 18 other items, and continuously wore a wrist actigraph for 30 days. Objective sleep parameters were computed from the actigraphy nighttime series, and correlated with subjective sleep disturbances reported on the following day, using repeated measures correlations. Multilevel Poisson regression analysis was performed to identify the objective and subjective parameters that affected subjective sleep rating. Poor subjective sleep score was correlated with poor sleep efficiency (rrm = -0.13, p = 0.002) and large number of wake episodes (rrm = 0.12, p = 0.005) on the rated night. Multilevel analysis demonstrated that the expected sleep disturbance score was affected by the joint contribution of the wake episodes (exp(ß) = 1.01, 95% confidence interval = 1.00 to 1.02, p = 0.016), fatigue (exp(ß) = 1.35, 95% confidence interval = 1.15 to 1.55, p < 0.001) and drowsiness (exp(ß) = 1.70, 95% confidence interval = 1.19 to 2.62, p = 0.018), self-rated the following evening, and sleep disturbance experienced one night before (exp(ß) = 1.77, 95% confidence interval = 1.41 to 2.22, p < 0.001). The night-by-night approach within a multidimensional home tele-monitoring framework mainly identified the objective number of wake episodes computed from actigraphy records as the main determinant of the severity of sleep complaint in cancer patients on chemotherapy. This quantitative information remotely obtained in real time from cancer patients provides a novel framework for streamlining and evaluating interventions toward sleep improvement in cancer patients.