Analysis of the comprehensive needs of primary caregivers of hospitalized colorectal cancer patients and characteristics analysis of high comprehensive needs population.

To identify the care needs of primary caregivers of colorectal cancer (CRC) patients and specify the characteristics of high-needs caregivers. A cross-sectional survey was conducted on the primary caregivers of CRC patients using the Comprehensive Needs Assessment Tool in Cancer Caregivers. The care needs and the characteristics of caregivers with high needs were identified using the Chi-square test and Logistic regression. The results of the survey of 364 primary caregivers of CRC patients showed that the top 2 dimensions of caregiver needs were the healthcare staff and the information dimension. The characteristics of caregivers with high demand for healthcare staff included on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. The characteristics of caregivers with high information needs included living in the city, on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. In clinical settings, the information needs of primary caregivers of CRC patients should be given due attention. Particular attention should be paid to the primary caregivers of CRC patients who live in cities, are on-the-job, have a per capita monthly income of <4000 yuan, and pay medical expenses through self-pay/public/rural insurance.

Conocimientos y habilidades del cuidador familiar del adulto mayor con demencia / Knowledge and skills of the family caregiver of the elderly adult with dementia

Introducción: la demencia es la alteración cognitiva con mayor incidencia. Provoca una disminución de las capacidades físicas y mentales. Las habilidades y conocimientos del cuidador familiar tienen un papel importante para entender las necesidades, fortalezas y limitaciones en el cuidado. Objetivo: establecer la relación entre los conocimientos y las habilidades en cuidados del cuidador familiar del adulto mayor con demencia. Metodología: estudio cuantitativo, transversal, prospectivo y con alcance correlacional. Muestra no aleatoria por disponibilidad de 26 cuidadores. Se aplicó la Escala de conocimientos sobre demencia DKAT2-sp con alfa de Cronbach de 0.79 y el Inventario de habilidad de cuidado-CAI con alfa de Cronbach de 0.84. Resultados: el género predominante fue el femenino. Los resultados de la prueba Rho de Spearman (p = 0.149) comprobaron que no existe relación y mostraron un nivel de significación mayor que lo esperado entre el conocimiento y la habilidad. Los familiares de personas con demencia cumplen con otros roles diferentes, además de que no reciben capacitación; tienen conocimientos altos y moderados con habilidades de cuidado medias y altas. Conclusión: los niveles de habilidad y conocimiento no son insuficientes; no existe una relación entre las variables de estudio.

Introduction: Dementia is the cognitive disorder with the higher incidence. It causes a decrease in physical and mental abilities. The skills and knowledge of the family caregiver comprise an important role in understanding the needs, strengths and limitations in care. Objective: To establish the relationship between knowledge and skills of the family caregiver of the elderly with dementia. Methodology: Study with a quantitative, cross-sectional, prospective approach and correlational scope. Non-random sample due to availability of 26 caregivers. The DKAT2-sp Dementia Knowledge Scale (with 0.79 Cronbach's alpha) and the Care Skills Inventory-CAI instrument (0.84 Cronbach's alpha) were applied. Results: The predominant gender was female. The results of the Spearman's Rho test (p = 0.149) confirmed that there is no relationship, showing a higher level of significance than expected between knowledge and ability. Family members of people with dementia fulfill other different roles, in addition to not receiving training; they have high and moderate knowledge with medium and high care skills. Conclusion: The skill and knowledge levels are not insufficient, demonstrating that there is no relationship between the variables.

Perceptions of Death Among Patients with Advanced Cancer Receiving Early Palliative Care and Their Caregivers: Results from a Mixed-Method Analysis.

BACKGROUND: Oncologists are often concerned that talking about death with patients may hinder their relationship. However, the views of death held by patients have not been thoroughly investigated. This study aimed to describe the perception of death among patients with advanced cancer receiving early palliative care (EPC) and their caregivers. MATERIAL AND METHODS: Qualitative and quantitative analyses were performed on 2 databases: (a) transcripts of open-ended questionnaires administered to 130 cancer patients receiving EPC with a mean age of 68.4 years and to 115 primary caregivers of patients on EPC with a mean age of 56.8; (b) texts collected from an Italian forum, containing instances of web-mediated interactions between patients and their caregivers. RESULTS: Quantitative analysis shows that: (a) patients and caregivers are not afraid of speaking about death; (b) patients and caregivers on EPC use the word "death" significantly more than patients on standard oncology care (SOC) and their caregivers (P < .0001). For both participants on EPC and SOC, the adjectives and verbs associated with the word "death" have positive connotations; however, these associations are significantly more frequent for participants on EPC (verbs, Ps < .0001; adjectives, Ps < .003). Qualitative analysis reveals that these positive connotations refer to an actual, positive experience of the end of life in the EPC group and a wish or a negated event in the SOC group. CONCLUSIONS: EPC interventions, along with proper physician-patient communication, may be associated with an increased acceptance of death in patients with advanced cancer and their caregivers.

Influência da sobrecarga, estresse e sintomas depressivos na saúde de idosos cuidadores: estudo longitudinal / Influencia de la carga, el estrés y los síntomas depresivos en la salud de los cuidadores de personas mayores: un estudio longitudinal / Influence of burden, stress and depressive symptoms on the health of older adult caregivers: a longitudinal study

Resumo Objetivo analisar o efeito da sobrecarga, do estresse e dos sintomas depressivos sobre as características de saúde de idosos cuidadores de idosos. Métodos estudo quantitativo e longitudinal com 127 idosos cuidadores. As variáveis utilizadas foram caracterização de saúde; sobrecarga; sintomas depressivos e estresse. Realizou-se modelo de regressão linear, teste de Poisson, com nível de significância de 5%. Resultados observou-se que um ponto a mais no escore na escala de sobrecarga aumenta em 0,030 o número de doenças (p=0,020) e risco de dor crônica (p=0,005); um ponto a mais no escore na escala de estresse aumenta em 0,058 o número de doenças (p=0,001) e risco para avaliação de saúde regular/ruim (p=<0,001) e dor crônica (p=<0,001); o aumento no escore na escala de sintomas depressivos aumenta o número de doenças (p=<0,001), risco de quedas (p=0,009), avaliação de saúde regular/ruim (p=<0,001) e dor crônica (p=<0,001). Conclusões e implicações para a prática estimativa de piora nos escores das variáveis psicológicas acarreta um risco para o agravamento de características de saúde física dos cuidadores. Com os resultados encontrados, observar-se a necessidade da criação de políticas públicas para os idosos cuidadores, a fim de propiciar uma melhor qualidade de vida.

Resumen Objetivo analizar el efecto de la sobrecarga, el estrés y los síntomas depresivos sobre las características de salud de los cuidadores de ancianos. Métodos estudio cuantitativo y longitudinal con 127 cuidadores de ancianos. Las variables utilizadas fueron caracterización de la salud; sobrecarga; Síntomas depresivos y estrés. Se realizó un modelo de regresión lineal, prueba de Poisson, con un nivel de significancia del 5%. Resultados se observó que un punto más en la puntuación de la escala de sobrecarga aumenta en 0,030 el número de enfermedades (p=0,020) y el riesgo de dolor crónico (p=0,005); un punto más en la puntuación de la escala de estrés aumenta en 0,058 el número de enfermedades (p=0,001) y el riesgo de evaluar regular/mala salud (p=<0,001) y dolor crónico (p=<0,001); el aumento de la puntuación en la escala de síntomas depresivos aumenta el número de enfermedades (p=<0,001), riesgo de caídas (p=0,009), valoración regular/mala de la salud (p=<0,001) y dolor crónico (p=<0,001). Conclusiones e implicaciones para la práctica la estimación del empeoramiento de las puntuaciones de las variables psicológicas conlleva un riesgo de empeoramiento de las características de salud física de los cuidadores. Con los resultados encontrados, se evidencia la necesidad de crear políticas públicas para los cuidadores de adultos mayores, con el fin de brindarles una mejor calidad de vida.

Abstract Objective to analyze the effect of burden, stress, and depressive symptoms on the health characteristics of older adult caregivers of older adults. Method A quantitative and longitudinal study was conducted with 127 older adult caregivers to analyze the effect of burden, stress, and depressive symptoms on their health characteristics. The variables assessed included health characterization, burden, depressive symptoms, and stress. A linear regression model and Poisson test were employed, with a significance level set at 5%. Results The findings revealed that an increase of one point in the burden scale score was associated with a 0.030 increase in the number of diseases (p=0.020) and an increased risk of chronic pain (p=0.005). Similarly, a one-point increase in the stress scale score was associated with a 0.058 increase in the number of diseases (p=0.001), as well as an increased risk of a poor subjective health assessment (p=<0.001) and chronic pain (p=<0.001). Furthermore, an increase in the score on the depressive symptoms scale was associated with an increase in the number of diseases (p=<0.001), risk of falls (p=0.009), poor subjective health assessment (p=<0.001), and chronic pain (p=<0.001). Conclusions and implications for practice The worsening estimate in the scores of psychological variables poses a risk to the deterioration of caregivers' physical health characteristics. The findings underscore the need for the development of public policies aimed at improving the quality of life for older adult caregivers.

Perfil de cuidadores de idosos dependentes em contexto de pandemia: impactos na saúde e no trabalho de quem cuida em Portugal / Profile of caregivers of dependent elderly in a pandemic context: impacts on the health and work of caregivers in Portugal / Perfil de los cuidadores de personas mayores dependientes en un contexto de pandemia: impactos en la salud y el trabajo de los cuidadores en Portugal

Objetivo: conhecer o perfil dos cuidadores formais e informais de idosos com dependência funcional em Portugal. Método: inquérito online realizado em junho-novembro 2021 pela Escola Nacional de Saúde Pública-NOVA de Lisboa. O questionário foi divulgado em redes sociais e em instituições que atuam nos cuidados a idosos dependentes. Protocolo aprovado pela Comissão de Ética da ENSP. Resultados: o sexo feminino prevaleceu (91,4% cuidadoras formais e 88% informais). Predominou o nível superior de escolaridade em ambas as categorias. Os cuidadores formais situavam-se numa faixa etária mais jovem que os cuidadores familiares. 51% dos cuidadores formais e 63,7% dos cuidadores informais relataram sofrer algum problema crônico de coluna. Os sentimentos de isolamento, tristeza e depressão predominaram entre os cuidadores formais e informais. Conclusão: o trabalho de cuidar é predominantemente feminino e a pandemia de Covid 19 trouxe impactos importantes para a saúde dos cuidadores, em especial para a saúde mental.

Objective: to know the profile of formal and informal caregivers of the elderly with functional dependence in Portugal. Method: online survey conducted in June-November 2021 by the National School of Public Health-NOVA of Lisbon. The questionnaire was published on social networks and in institutions that work in the care of dependent elderly. Protocol approved by the Ethics Committee of the School. Results: females prevailed (91.4% formal and 88% informal caregivers). Higher education level predominated in both categories. Formal caregivers were in a younger age group than family caregivers. 51% of formal caregivers and 63.7% of informal caregivers reported suffering from a chronic back problem. Feelings of isolation, sadness and depression predominated among formal and informal caregivers. Conclusion: caring work is predominantly female and the Covid 19 pandemic has had important impacts on the health of caregivers, especially mental health.

Objetivo: conocer el perfil de los cuidadores formales e informales de ancianos con dependencia funcional en Portugal. Método: encuesta online realizada en junio-noviembre de 2021 por la Escuela Nacional de Salud Pública-NOVA de Lisboa. El cuestionario fue difundido en redes sociales y en instituciones que trabajan en el cuidado de ancianos dependientes. Protocolo aprobado por el Comité de Ética de la Escuela. Resultados: predominó el sexo femenino (91,4% cuidadoras formales y 88% informales). El nivel de educación superior predominó en ambas categorías. Los cuidadores formales estaban en un grupo de edad más joven que los cuidadores familiares. El 51% de los cuidadores formales y el 63,7% de los cuidadores informales reportaron padecer un problema crónico de espalda. Los sentimientos de aislamiento, tristeza y depresión predominaron entre los cuidadores formales e informales.Conclusión: el trabajo de cuidado es predominantemente femenino y la pandemia de Covid 19 ha tenido impactos importantes en la salud de los cuidadores, especialmente en la salud mental.

Caracterização de cuidadores de pessoas com deficiência: invisibilidade e desafios de cuidar no contexto rural / Characterization of caregivers of people with disabilities: invisibility and challenges of caring for in the rural context / Caracterización de los cuidadores de personas con discapacidad: invisibilidad y retos del cuidado en el contexto rural

Objetivo: analisar as características dos cuidadores familiares de Pessoas com Deficiência no contexto rural. Método: trata-se de um estudo quantitativo, com 219 cuidadores de Pessoas com deficiência, que vivem no contexto rural, em oito municípios do sul do Brasil. Os dados foram coletados no período de setembro de 2018 a junho de 2019, por meio de um questionário com variáveis de caracterização e condições do cuidado e do cuidador. A análise dos dados foi realizada por frequência e comparação de frequência. Resultados: os cuidadores domiciliares são, em sua maioria, mulheres, mães, com idade entre 40-60 anos e com baixa escolaridade. Adoeceram após começar a cuidar, descansam pouco e necessitam melhores condições de saúde para ampliar sua qualidade de vida. Conclusão: no contexto rural as cuidadoras de pessoas com deficiência são, muitas vezes, invisíveis aos serviços de saúde e necessitam ser cuidadas.

Objective: to analyze the characteristics of family caregivers of People with Disabilities in the rural context. Method: this is a quantitative study, with 219 caregivers of People with Disabilities, who live in a rural context, in eight towns in southern Brazil. Data were collected from September 2018 to June 2019, using a questionnaire with characterization variables and conditions of the care and of the caregiver. Data analysis was conducted by means of frequency and frequency comparison. Results: home caregivers are mostly women, mothers, aged 40-60 years and with low education level. They became ill after starting to care for, rest a few hours, and need better health conditions to increase their quality of life. Conclusion: in the rural context, caregivers of people with disabilities are often invisible to health services and need to be cared for.

Objetivo: analizar las características de los cuidadores familiares de Personas con Discapacidad en el contexto rural. Método:se trata de un estudio cuantitativo, con 219 cuidadores de personas con discapacidad, que viven en el contexto rural, en ocho ayuntamientos del sur de Brasil. Los datos se recolectaron entre septiembre de 2018 y junio de 2019, mediante un cuestionario con variables de caracterización y condiciones del cuidado y del cuidador. El análisis de los datos se realizó mediante frecuencias y comparación de frecuencias. Resultados: los cuidadores domiciliarios son en su mayoría mujeres, madres, entre 40 y 60 años y con bajo nivel educativo. Se enfermaron después de empezar a cuidar, descansan poco y necesitan mejores condiciones de salud para mejorar su calidad de vida. Conclusión: en el contexto rural, los cuidadores de personas con discapacidad suelen ser invisibles para los servicios de salud y necesitan ser atendidos.

Disparity of perception of quality of life between head and neck cancer patients and caregivers.

BACKGROUND: Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients' quality of life (QOL) after treatment completion. METHODS: Caregivers' and patients' perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers' and patients' QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores. RESULTS: Of 47 caregivers recruited, 42.6% (n = 20) viewed patients' social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients' physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL (p = .01) and differences in perception of physical QOL (p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients' social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients' physical QOL scored 6.09 points higher. CONCLUSION: Caregivers commonly view patients' QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research.

Effectiveness of Multicomponent Intervention on Quality of Life of Family Caregivers of Cancer Patients.

OBJECTIVE: The study aimed to determine the effectiveness of the multicomponent intervention on Quality of life (QOL) of family caregivers of cancer patients. METHODOLOGY: A Quasi-experimental study with pre and post-test measures was conducted among 200 caregivers of cancer patients selected by convenient sampling technique. The experimental group received the intervention, and no intervention was given for the control group during the study period. The data were collected from family members looking after the cancer patients diagnosed with breast/head & neck cancers and who were in the third and fourth stages of cancer. After the pre-test, provided multicomponent intervention (Pranayama, yogic relaxation, counselling and Education) and a post-test was conducted at the first month & third month. The obtained data were analysed and inferred using descriptive and inferential statistics to compare the outcomes among the groups. RESULT: Most of the caregivers belong to the age group of 31 to 40 years in the intervention group (31%) and in the control group (35%), 31% of them had their education up to a primary level in both the groups and most of the caregivers were spouses (49%). Regarding the QOL of family members, improvement was noted from baseline 66.66 to 126.82 (3 months) among the intervention group, and in the control group, mean QOL enhanced from 59.77 to 81.97. Repeated measure ANOVA was computed to analyse difference within and between the groups and it showed that the intervention program was efficacious in enhancing the QOL of family caregivers of cancer patients (F (1, 191) =639.02, p=.001). CONCLUSION: Nurses play a vibrant role in improving the Quality of life of family members of cancer patients since they are mostly involved in providing care. Health care system must ensure that the family members who provide care to the cancer patients receive appropriate teaching programmes on reducing their burden.

Stress and psychological adjustment in caregivers of children with cancer.

OBJECTIVE: To examine effects of stress on caregiver psychological adjustment during the first year of pediatric cancer. METHOD: Caregivers (N = 159) of children with cancer completed monthly questionnaires assessing domains of caregiver psychological adjustment (depression, anxiety, and posttraumatic stress symptoms) and stress (general life stress, treatment-related stress, caregiver perceptions of treatment intensity and life threat). Effects of stress were assessed at two levels to examine whether within-person changes in stress predicted concurrent changes in caregiver adjustment and whether average stress was associated with between-person differences in caregiver adjustment trajectories. RESULTS: Overall, higher levels of stress factors were associated with poorer caregiver adjustment at both the between- and within-person levels, with high average levels of treatment-related stress and general life stress emerging as leading predictors of worse adjustment. CONCLUSIONS: Both types of stressors, those directly related as well as unrelated to a child's cancer, contribute uniquely to caregiver distress. Caregiver distress is impacted by both overall levels of stress over time as well as month-to-month changes in stress. Implications for informing care for at-risk caregivers are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Post-traumatic stress symptoms in long-term disease-free cancer survivors and their family caregivers.

BACKGROUND: The experience of cancer is highly stressful and potentially traumatic. We assessed the presence of Post-Traumatic Stress Symptoms (PTSS) in long-term cancer survivors and their caregivers, while examining the association between PTSS and clinical, demographic and psychological variables in the long term. METHODS: In this cross-sectional study 212 survivor-family caregiver dyads completed measures of post-traumatic stress symptoms (PTSS) (Impact of Event Scale), depression and anxiety (Hospital Anxiety Depression Scale). Coping strategies, fatigue, cognitive decline, stressful life events and psychopathological history were also assessed among survivors. Data were analyzed using mixed models, accounting both for individual and dyadic effects. RESULTS: Cancer survivors and their caregivers were assessed after a mean of 6 years after treatment. Twenty per cent of survivors and 35.5% of caregivers had possible posttraumatic stress disorder (PTSD), while 23 patients (11.0%) and 33 caregivers (15.6%) had probable PTSD. Among cancer patients, the severity of post-traumatic symptoms was associated with an anxious coping style, previous psychopathology and depression (p < 0.001), whereas among caregivers it was associated with depression and having a closer relationship with patients (p < 0.001). Patients' depression was associated with caregivers' intrusion symptoms. CONCLUSIONS: High levels of cancer-related PTSS were still present several years after treatment in both survivors and caregivers. Psychopathology may derive from complex interactions among coping, previous disorders and between-person dynamics.

A Global Survey of Patient and Caregiver Experiences Throughout Care for Developmental Dysplasia of the Hip.

BACKGROUND: Diagnosis and treatment for developmental dysplasia of the hip (DDH) varies greatly depending on condition severity, age at diagnosis, and professional opinion. Little is known about patient experiences across the globe. We aimed to characterize global patient and caregiver experiences during DDH care and to highlight patient-identified priorities. METHODS: We developed a cross-sectional survey in collaboration with 7 DDH outreach organizations. DDH patients and/or their caregivers (above 18 y old) were invited to complete an international online survey about their experiences. Participants were recruited through web media of all collaborating organizations. Data collection took place over 3 months. Descriptive statistics were used to analyze quantitative results. Qualitative content analysis was used to categorize open-ended responses. RESULTS: A total of 739 participants completed the survey, representing 638 (86.3%) parents/guardians of DDH patients, and 101 (13.7%) patients. Three hundred eighty-six (52.2%) participants received diagnosis by 3 months of age; mean age of diagnosis was 15.96 months (90% confidence interval=12.04, 19.91). Of 211 participants with family history of DDH, 68 (32.3%) did not receive DDH screening. Of 187 patients born breech, 82 (43.9%) did not receive DDH screening. In total, 36/94 (38.3%) participants with both family history and breech birth did not receive DDH screening. Most participants reported treatment (696/730, 95.3%), including bracing (n=461) surgery (n=364), and/or closed reduction (n=141). A total of 144 patients reported >1 surgery; 82 reported >3 surgeries. Participants reported a range of 1 to 400 visits to health care professionals for DDH care across 1 to 66 years. Lack of information and resources on treatment practicalities and timelines, along with emotional burden of diagnosis, were greatest challenges reported. CONCLUSION: Results demonstrate that DDH diagnosis and treatment can pose significant burden on patients and caregivers. Reliable public information is needed to support those affected. Global educational efforts are needed to raise awareness of DDH risk factors, signs, and symptoms among care providers, to increase awareness and improve identification, screening, and monitoring of at-risk children.

Everyday Abilities Scale for India in Screening for Poststroke Dementia Among Young Stroke Survivors.

INTRODUCTION: Cognitive dysfunction after stroke is an important concern. We explored the utility of everyday abilities scale for India (EASI) for screening for dementia among young stroke survivors. METHODS: We interviewed 150 young stroke survivors and caregivers. Vascular dementia was diagnosed according to American Heart Association-American Stroke Association (ASA-AHA) criteria. EASI was administered to all caregivers. Receiver operating characteristic curve analysis was used to determine the area under the curve and optimum cut-points for EASI for the identification of dementia. RESULTS: Median EASI scores among subjects with dementia (n=35; 23.3%) was 2 (interquartile range: 0-4) and significantly different from those without (median: 0; interquartile range: 0-1; P<0.001). The area under the curve was 0.768 (95% confidence interval: 0.674-0.863), and at the optimum cut-point of 2 on EASI, a sensitivity of 60% and specificity of 91.3% was achieved for the identification of dementia. CONCLUSION: EASI appears to be a promising tool to screen for dementia among young stroke survivors.

Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services.

PURPOSE: This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. METHODS: Using real-time insights from two Cancer Council NSW services-131120 Information and Support Line and Online Community (CCOC) forums-we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. RESULTS: In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. CONCLUSIONS: The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

Predictors of sleep disturbances in caregivers of patients with advanced cancer receiving home palliative care: A descriptive cross-sectional study.

PURPOSE: To evaluate the quality of sleep in caregivers of patients with advanced cancer receiving home palliative care, basing the analysis on subjective and objective measures, and to develop a predictive model of sleep disturbances among this population. METHOD: A descriptive cross-sectional study was conducted in six clinical management units within primary healthcare centres. Data were obtained during a period of six months, from a sample population of 41 caregivers. The Pittsburgh Sleep Quality Index (PSQI) and a 7-day accelerometry evaluation were performed to assess sleep quality. Daytime sleepiness, caregiver strain and quality of life were also evaluated. RESULTS: According to the PSQI, 90.2% of participants had poor sleep quality. The average duration of night-time sleep, measured by accelerometry and the PSQI, was 6 h. Taking PSQI as the dependent variable, the study model predicted 40.7% of the variability (p < 0.01). The variables "Caregiver strain" and "Daily hours dedicated to care" produced the following results: B coefficient 0.645; p = 0.001; and B coefficient 0.230; p = 0.010, respectively. CONCLUSIONS: The caregivers presented significant health-related alterations, including sleep disturbances, which were directly related to two variables: the index of caregiver strain and the number of hours per day dedicated to providing care.

Experiencing communication related to knowing the cancer diagnosis and prognosis: A multi-perspective interpretative phenomenological study.

PURPOSE: To understand the phenomenon of communication related to knowing the diagnosis and prognosis, by exploring the perspectives of patients with advanced cancer and those of their caregivers, physicians and nurses. METHODS: Drawing upon a multi-perspective design, a total of 27 semi-structured interviews involving four different groups of stakeholders (7 patients, 7 caregivers, 6 physicians, and 7 nurses) -who were linked by a carer-cared relationship-were conducted in two Oncology Departments of two Italian hospitals. Interpretative Phenomenological Analysis was used to interpret the participants' narratives. RESULTS: Two overarching themes were identified: The first theme "the «what is it?¼ and the «what will happen to me?¼" illustrates the two different paths of communication of diagnosis and prognosis. The second theme "Matching and mismatching in identifying the others as speakers" shows that not each of the four parties recognizes the others as reciprocal speakers on topics related to diagnosis and prognosis, although all of them display reciprocal communication interactions. CONCLUSIONS: Communication related to diagnosis and prognosis is often handled by health professionals without a comprehensive and integrated understanding of the communication approach. There is a correspondence between the nurses' perception of their extraneousness to the diagnosis and the prognosis related communication, and the descriptions and perceptions of the nurse's role reported by the other participants. Understanding how the different groups of stakeholders reciprocally interact and influence each other, can help to identify potential positive resources and detect hindrance in the implementation of an effective patient-centered approach, while avoiding silo cultures.

Association Between Caregiver Strain and Self-Care Among Caregivers With Diabetes.

Importance: Caregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care. Objective: To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes. Design, Setting, and Participants: This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007. Exposures: Caregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain. Main Outcomes and Measures: Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates. Results: Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]). Conclusions and Relevance: In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.

Effectiveness of Mass Media Campaigns to Improve Handwashing-Related Behavior, Knowledge, and Practices in Rural Bangladesh.

Water, sanitation, and handwashing interventions that use intensive interpersonal communication improve targeted behaviors, but are expensive at scale. Mass media is an alternative that could reach more people at lower cost but has rarely been rigorously evaluated. We assessed the effectiveness of a mass media campaign in improving handwashing knowledge and practices in rural Bangladesh. We conducted a cross-sectional assessment before the campaign among 8,947 households and again after 4 months of the campaign among 8,400 different households in the same areas. Trained enumerators conducted spot checks of water, sanitation, and hygiene facilities, and recorded reported knowledge and practices. We compared these outcomes after versus before the campaign using generalized linear models with robust standard errors. After the media campaign, caregivers were more likely to recall ≥ 3 messages regarding handwashing (prevalence ratio [PR] = 1.44, 1.34-1.55), sanitation (PR = 1.45, 1.35-1.55), and safe water (PR = 1.17, 1.08-1.26). After the campaign, the prevalence of using soap and water during handwashing demonstrations was higher among caregivers (PR = 1.15, 1.12-1.19) and children (PR = 1.31, 1.22-1.41). Hands were more commonly observed to be visibly clean among caregivers (PR = 1.14, 1.07-1.20) and children (PR = 1.13, 1.05-1.21). Soap and water was more commonly observed in handwashing stations near latrines (PR = 1.12, 1.06-1.19) and in cooking/eating places (PR = 1.09, 1.01-1.18). Our findings indicate improved handwashing knowledge and behaviors following a mass media campaign. This promising approach can be deployed to improve water, sanitation, and hygiene practices at scale and should be evaluated in other contexts.

Transitions during end-of-life care from the perspective of informal caregivers - A concept analysis using Rodgers' (2000) evolutionary approach.

PURPOSE: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. METHODS AND SAMPLE: The authors used Rodgers' (2000) concept analysis framework to examine this concept. FINDINGS: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality. There was also duration to this process that was often unknown and unpredictable. This concept analysis provides useful insight into understanding the complex dynamics of transition during this period. The primary antecedent of this concept, prompting transition, is a diagnosis of non-curative disease for the patient. In some cases, a gradual realisation rather than a formal diagnosis that the illness has progressed to a non-curative stage, can also be an antecedent. CONCLUSION: Transition during end-of-life-care for informal caregivers can be a highly emotional time for this vulnerable cohort. Effective transitioning can ensure a stability and quality end-of-life outcomes, such as a peaceful death, as the awareness and learning that it brings, prompts planning actions for terminal care. Through recognising the findings of this concept analysis, deeper insight may be gained to support the provision of care, by nurses, to informal caregivers, prompting them towards effective transitions that foster the best interest of the patient.

The Effectiveness of Bereavement Support for Adult Family Caregivers in Palliative Care: A Meta-Analysis of Randomized Controlled Trials.

PURPOSE: This meta-analysis aimed to summarize and synthesize the effectiveness of bereavement support for adult family caregivers in palliative care. METHODS: Meta-analysis was conducted. The databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane, Embase, Medline, PubMed, Scopus, and Web of Science were comprehensively searched from inception until January 2020. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and standard methods for conducting a meta-analysis. Data analysis was performed using Comprehensive Meta-analysis version 3.0, and the random-effects model was adopted. FINDINGS: In total, 19 randomized controlled trials with an overall sample size of 2,690 participants met the inclusion criteria. The study showed that bereavement support had a significant effect on reducing grief (Hedges' g score = -0.198; 95% confidence interval [CI] -0.310 to -0.087), depression (Hedges' g score = -0.252; 95% CI -0.406 to -0.098), and anxiety (Hedges' g score = -0.153; 95% CI -0.283 to -0.023); however, high heterogeneity was present. No statistically significant difference was shown for traumatic feelings. Based on moderator analysis, a group format was more effective for grief, a combined individual and group format for depression, and an individual format for anxiety. Bereavement support was more effective when delivered by professionals, when delivered in more than six sessions, and need to be evaluated within 6 months. CONCLUSIONS: Bereavement support was effective in reducing grief, depression, and anxiety. The majority of the included studies had moderate heterogeneity, which limited the comparability of the evidence. Therefore, more robust randomized controlled trials are needed to confirm these study results. CLINICAL RELEVANCE: This meta-analysis provides evidence that bereavement support delivered in the palliative care setting is effective for reducing grief, depression, and anxiety. Nurses and other healthcare professionals can make recommendations for adult family caregivers based on this study in reducing psychological symptoms due to a loss in the palliative care domain.

Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients.

PURPOSE: Cancer caregiving is shown to be a burdensome experience in typical times. The purpose of this study was to describe cancer caregivers' emotional, physical, and financial strain during the COVID-19 pandemic and compared to preCOVID-19, and explore racial and ethnic variations in caregiver strain. METHODS: We conducted a cross-sectional online survey using Lucid, LLC, incorporating quotas for race, ethnicity, gender and age. Caregivers had to be adults living in the USA and currently providing unpaid care to an adult cancer patient (i.e., during COVID-19) and prior to the pandemic. We assessed the caregivers' emotional, physical, and financial strain and asked them to compare to preCOVID-19 caregiving. Analyses included descriptive and linear regression adjusting for sociodemographic and caregiving-related variables. RESULTS: A total of 285 caregivers met eligibility, and most were nonHispanic white (72.3%) and female (59.6%). Based on a scale of "1: Much lower" to "5: Much higher", the financial, physical and emotional strain/stress experienced by caregivers compared to preCOVID-19 was, on average, 3.52 (SD: 0.82; range: 1-5) for financial strain, 3.61 (SD: 0.86; range: 1-5) for physical strain, and 3.88 (SD: 0.89; range: 1-5) for emotional stress. NonHispanic black caregivers were significantly more likely than nonHispanic white caregivers to indicate that caregiving-related financial strain was higher than preCOVID-19. Moreover, Hispanic caregivers compared to nonHispanic white caregivers reported caregiving-related emotional stress was higher than preCOVID-19. CONCLUSION: These findings suggest a need to be attentive to racial and ethnic variations in emotional and financial strain and provide targeted support in clinical care and via public policy during a public health crisis.