Advance Care Planning Preferences for Adolescents With Cardiac Disease.

BACKGROUND AND OBJECTIVES: Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. METHODS: Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. RESULTS: Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. CONCLUSIONS: Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.

Understanding Caregiver Perspectives on an Electronic Consultation and Referral System.

This study examined caregiver impressions of an electronic consultation and referral (ECR) system. Participants included 56 caregivers of primary care patients referred through the ECR system. Semistructured interviews and surveys were conducted between August 2018 and April 2019. Transcripts were coded and themes developed using thematic content analysis. A total of 51% of caregivers stated that they would prefer to see their child's primary care provider (PCP) for a specialty issue if they could receive the same quality of care. All caregivers who received an electronic consult (n = 28) said that they would utilize that process again. Three themes emerged: (1) caregivers expect immediate action prior to or instead of a specialty referral; (2) caregiver preferences for PCP versus specialist are mediated by both child and provider characteristics; (3) caregiver attitudes toward the ECR system are influenced by external considerations and experiences with the system. Results suggest caregivers value enhanced communication and immediate access to specialty input facilitated by the ECR system.

Caregiver Perspectives on Underutilization of WIC: A Qualitative Study.

OBJECTIVES: The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) is a federal program that improves the health of low-income women (pregnant and postpartum) and children up to 5 years of age in the United States. However, participation is suboptimal. We explored reasons for incomplete redemption of benefits and early dropout from WIC. METHODS: In 2020-2021, we conducted semistructured interviews to explore factors that influenced WIC program utilization among current WIC caregivers (n = 20) and caregivers choosing to leave while still eligible (n = 17) in Massachusetts. By using a deductive analytic approach, we developed a codebook grounded in the Consolidated Framework for Implementation Research. RESULTS: Themes across both current and early-leaving participants included positive feelings about social support from the WIC clinic staff and savings offered through the food package. Participants described reduced satisfaction related to insufficient funds for fruits and vegetables, food benefits inflexibility, concerns about in-clinic health tests, and in-store item mislabeling. Participants described how electronic benefit transfer cards and smartphone apps eased the use of benefits and reduced stigma during shopping. Some participants attributed leaving early to a belief that they were taking benefits from others. CONCLUSIONS: Current and early-leaving participants shared positive WIC experiences, but barriers to full participation exist. Food package modification may lead to improved redemption and retention, including increasing the cash value benefit for fruits and vegetables and diversifying food options. Research is needed regarding the misperception that participation means "taking" benefits away from someone else in need.

Protective Role of Caregiver Preparedness on the Relationship Between Depression and Quality of Life in Stroke Dyads.

BACKGROUND AND PURPOSE: Depression and quality of life (QOL) have an interdependent and transactional nature in stroke survivor-caregiver dyads. While the strong relationship between depression and physical and emotional QOL in stroke survivor-caregiver dyads is well known, it is less clear if this relationship is moderated by caregiver preparedness, which could easily be targeted with interventions. In this study, we examined the moderating role of caregiver preparedness on the association between depression and QOL in stroke survivor-caregiver dyads. METHODS: We used a longitudinal design with follow-ups every 3 months over a 1-year period. Considering the nonindependent nature of the data (survivors and their caregivers), we used multilevel modeling to analyze data at the dyad level. We implemented 4 longitudinal dyadic moderation models (one for each QOL domain: physical, psychological, social, and environmental) using hierarchical linear modeling. RESULTS: A sample of 222 stroke survivor-caregiver dyads was analyzed. Stroke survivors were older (M=70.8, SD=11.9) than their caregivers (M=52.4, SD=13.1). Stroke survivors predominantly had an ischemic stroke, equally distributed by site. Caregivers were primarily female (66%), with a medium to high educational level (57%). Caregiver preparedness significantly moderated the association between survivor depression and survivor psychological (B=0.56, P<0.01) and environmental (B=0.58, P<0.01) QOL at baseline and social QOL over time (B=0.24, P<0.05). Similarly, caregiver preparedness significantly moderated the association between caregiver depression and caregiver physical (B=0.25, P<0.01) and environmental (B=0.18, P<0.05) QOL over time. CONCLUSIONS: Caregiver preparedness has a positive influence on both members of the dyad. Assessment of stroke-caregiver preparedness could be helpful to motivate clinicians to develop and implement interventions for stroke survivor-caregiver dyads.

Factores de riesgo de carga en cuidadores de ancianos con síndrome demencial / Burden risk factors in caregivers of elder people with dementia syndrome

RESUMEN Introducción: las demencias son enfermedades que producen discapacidad física y mental, con una disminución notable en la calidad y expectativa de vida del enfermo y su cuidador. Objetivo: identificar la frecuencia de carga y los factores de riesgo asociados a esta en cuidadores de ancianos con síndrome demencial del municipio San Miguel del Padrón, provincia La Habana. Materiales y métodos: estudio observacional analítico de corte transversal (de casos y controles), realizado en San Miguel del Padrón, de enero de 2013 a diciembre de 2015. Se estudiaron 329 cuidadores seleccionados por muestreo intencional no probabilístico, pertenecientes a las seis áreas de salud de dicho municipio. La variable dependiente fue la carga y las independientes fueron las relacionadas con el cuidador, el anciano y la familia. Para las diferencias de porcentajes o tablas de contingencia se utilizó el Chi2 de Pearson, con el tamaño del error prefijado de p ≤ 0,05. Para identificar los posibles factores de riesgo de carga se empleó la regresión logística múltiple con respuesta dicotómica. Resultados: la mitad de los cuidadores presentaban carga, y los factores de riesgo identificados fueron la religiosidad, la severidad de los síntomas psicológicos y conductuales, la depresión, los motivos para el cuidado, padecer enfermedad crónica y el funcionamiento familiar. Conclusiones: los resultados evidencian la necesidad de diseñar futuras intervenciones educativas para disminuir la carga del cuidador del anciano con síndrome demencial (AU).

ABSTRACT Introduction: dementias are diseases that cause physical and mental disability, with a marked decrease in the life quality and life expectancy of the patient and his/her caregiver. Objective: to identify the burden frequency and risk factors associated with it in caregivers of the elder people with dementia syndrome from the municipality of San Miguel del Padrón, La Habana province. Materials and methods: cross-sectional analytical observational study (of cases and controls), carried out in San Miguel del Padrón, from January 2013 to December 2015. The authors studied 329 caregivers chosen by intentional non-probabilistic sampling, belonging to the six health areas of that municipality. The dependent variable was the burden, and the independent ones were those related to the caregiver, the elder person and the family. For percentage differences or contingency tables Pearson's Chi2 was used, with the prefixed error size of p ≤ 0.05. The multiple logistic regression with dichotomous answer was used to identify the possible burden risk factors. Results: half of the caregivers had burden, and the identified risk factors were religiosity, the severity of psychological and behavioral symptoms, depression, the reasons of care, suffering a chronic disease, and family functioning. Conclusions: the results evidenced the need of designing future educational interventions to lessen the burden on the caregiver of elder person with dementia syndrome (AU).

Mental Health of People with Dementia During COVID-19 Pandemic: What Have We Learned from the First Wave?

BACKGROUND: People with dementia (PWD) and their caregivers are populations highly vulnerable to COVID-19 pandemic and its consequences. A better knowledge of the living conditions during the first lockdown is necessary to prevent the risk of poor mental health (PMH) in this population. OBJECTIVE: The present study aimed to compare the mental health of caregivers of PWD living at home or in nursing-homes and to identify specific factors influencing their mental health. METHODS: We conducted an anonymous cross-sectional online survey in France from March 17 to May 11, 2020. Three hundred and eighty-nine caregivers accompanying a PWD living at home (HC) and 159 accompanying a PWD living in a nursing home (NHC) participated in the study. Caregivers' mental health including anxiety, depression, stress, and burden was assessed with self-reported standardized scales. RESULTS: Half of the caregivers exhibited PMH, including depression, anxiety, or self-reported stress. Similar PMH rates were provided whatever the PWD place of residence. Regarding HC, our results also highlighted a number of risk factors for PMH, including the fact that caregiver live with PWD, to give increased support to PWD, and to feel more isolated for managing PWD since lockdown. CONCLUSION: PMH was observed for caregivers of PWD during lockdown, whatever PWD living place, suggesting that concern for PWD may explain more of caregiver distress than increased material tasks. In the future, it will be necessary to pay attention to caregivers after the crisis by estimating the longer-term impact on their mental health.

Características sociodemográficas en cuidadores principales de pacientes operados de cáncer de cerebro / Socio-demographic characteristics in primary caregivers of patients with brain cancer surgery

RESUMEN Introducción: la atención al enfermo es llevada a cabo por una secuencia específica de la familia, por lo que esta es considerada un cuidador principal. Objetivo: describir las características sociodemográficas en cuidadores principales de pacientes operados de cáncer de cerebro. Materiales y métodos : se realizó un estudio descriptivo, retrospectivo, en un universo de 128 cuidadores principales de pacientes operados de cáncer de cerebro en el Hospital Universitario Clínico Quirúrgico Comandante Faustino Pérez Hernández, de Matanzas, entre 2016 y 2018. Criterio de inclusión: cuidadores que residían en la provincia y aceptación del consentimiento informado. Se excluyeron familiares de pacientes que fallecieron durante la investigación. Se aplicaron cuestionarios y entrevistas para caracterizar los resultados. Los mismos se analizaron en frecuencias absolutas, relativas, porcentual, en paquete estadístico de SPSS versión 20.0 en Windows. Resultados : predominó el sexo femenino (79,68 %). El 100 % de los cuidadores principales residían en casa del enfermo. Prevaleció el nivel de escolaridad de técnico medio (35,93 %); 88,28 % de los cuidadores mantenían vínculo laboral, y 41,40 % eran hermanas de los enfermos. Dentro de las necesidades de aprendizaje del cuidador, el déficit de conocimientos sobre la enfermedad constituyó el 73,43 %. Conclusiones: imperó el género femenino en los cuidadores con vínculo laboral, y con mayor incidencia las hermanas. Se evidenció la complejidad del cuidado en el hogar de los pacientes con secuelas, minusvalía progresiva producidas por la enfermedad, y que generalmente la mujer asume con más facilidad (AU).

ABSTRACT Introduction: the care of the patient is carried out by a specific sequence of the family, catalogued as a main caregiver. Objective: to describe the socio-demographic characteristics in main caregivers of patients who underwent a brain cancer surgery. Materials and methods: a retrospective, descriptive study was carried out in a universe of 128 main caregivers of patients who underwent brain cancer surgery in the University Hospital Faustino Perez Hernandez, of Matanzas, from 2016 until 2018. Inclusion criteria: caregivers living in the province of Matanzas and giving the informed consent. The relatives of patients who died during the research were excluded. Interviews were made and questionnaires applied to characterize the results. They were analyzed in absolute, relative, and percentage frequencies in statistical packet Windows SPSS, 20.0. Results: female sex predominated (79.68%). 100% of main caregivers lived in the house of the patient. The technician scholarship predominated (35.93%); 88.28% of the caregivers kept their employment bonds, and 41.40% were patients' sisters. The deficit of knowledge on the disease was 73.43% of the caregiver learning necessities. Conclusions: female genre prevailed in caregivers with employment bonds, with higher incidence of sisters. It was evidenced the complexity of home care of the patients with sequels, progressive disabilities caused by the disease, generally assumed more easily by women (AU).

The Dual Epidemics of 2020: Nursing Leaders' Reflections in the Context of Whole Person/Whole Systems.

The Greater Boston Nursing Collective, a consortium composed of university nursing deans and chief nursing officers within academic medical centers and specialty hospitals in Boston, Massachusetts, was formed in 2014. Since the group's inception, our mission has been to create and reinforce whole-person/whole-system healing environments to improve the health of all communities. Through our collaboration in navigating the dual epidemics of COVID-19 and structural racism within our respective organizations, and across the United States and the world, we share experiences and lessons learned. Our common mission is clearer than ever: to create safe and joyful work environments, to protect the dignity of those we are privileged to serve, and to generate policies to advance health equity to rectify societal forces that have shaped this dual epidemic. We are humbled by the many who persist despite limited rest and respite, and whose stories, innovations, and leadership we are honored to witness and share. They have defined our generation, just as nurses in earlier crises have done: leading through service to others as our purpose and privilege.

COVID-19: Association Between Increase of Behavioral and Psychological Symptoms of Dementia During Lockdown and Caregivers' Poor Mental Health.

BACKGROUND: From March 2020, the support and care systems for caregivers and people with dementia (PWD) were suspended or dramatically changed due to the lockdown during the world pandemic of COVID-19. Thus, these changes in living conditions have had deleterious consequences on the behavior of PWD and subsequently on their caregivers' mental health, the two being linked. OBJECTIVE: Our study aimed to examine changes in behavior among PWD and to look for associations between the evolution of behavioral and psychological symptoms of dementia (BPSD) and caregivers' mental health in the context of COVID-19. METHODS: The study was conducted among caregivers of PWD living at home in France. Caregivers were interviewed via an anonymous cross-sectional online survey during the first lockdown between April 15 and June 15, 2020. RESULTS: Three hundred and eighty-nine caregivers accompanying a relative living at home participated in the study; 43.3%of the PWD presented a worsening of BPSD during the lockdown. With multivariate logistic regressions, a significant association was observed between "more BPSD" and burden, anxiety and depression, between "BPSD equivalent" and anxiety and depression, and between "emerging BPSD" and only depression. CONCLUSION: The lockdown seems to have an impact on behavioral disorders in PWD and these disorders are associated with poorer mental health of caregivers. Our findings suggest attention should be given to caregivers of PWD who have BPSD before lockdown and the need for continued consultations and professional help in case of new lockdowns.

Neuropsychiatric Symptoms in Patients with Dementia Associated with Increased Psychological Distress in Caregivers During the COVID-19 Pandemic.

BACKGROUND: The social isolation imposed by COVID-19 pandemic can have a major impact on the mental health of dementia patients and their caregivers. OBJECTIVE: We aim to evaluate the neurological decline of patients with dementia and the caregivers' burden during the pandemic. METHODS: We performed a cross-sectional study. Caregivers of dementia patients following in the outpatient clinic were included. A structured telephone interview composed of the Neuropsychiatric Inventory Questionnaire (NPI-Q), Zarit Burden Interview (ZBI), Beck Depression (BDI) and Anxiety (BAI) Inventories to address cognitive, behavioral, and functional changes associated with social distancing during the Sars-Cov-2 outbreak. Patients were divided in two groups according to caregivers' report: with perceived Altered Cognition (AC) and Stable Cognition (SC). RESULTS: A total of 58 patients (median age: 57 years [21-87], 58.6%females) and caregivers (median age: 76.5 years [55-89], 79.3%females) were included. Cognitive decline was shown by most patients (53.4%), as well as behavioral symptoms (48.3%), especially apathy/depression (24.1%), and functional decline (34.5%). The AC group (n = 31) presented increased behavioral (67.7%versus 25.9%, p = 0.002) and functional (61.3%versus 3.7%, p < 0.001) changes when compared to the SC group. In the AC group, ZBI, BDI, NPI-Q caregiver distress, and NPI-Q patient's severity of symptoms scores were worse than the SC group (p < 0.005 for all). CONCLUSION: Patients' neuropsychiatric worsening and caregiver burden were frequent during the pandemic. Worsening of cognition was associated with increased caregivers' psychological distress.

Qualitative Study of Chinese Stroke Caregivers' Caregiving Experience During the COVID-19 Pandemic.

BACKGROUND AND PURPOSE: The coronavirus disease 2019 (COVID-19) outbreak has led to disruptions in health care service delivery worldwide, inevitably affecting stroke survivors requiring ongoing rehabilitation and chronic illness management. To date, no published research has been found on stroke caregiving during the COVID-19 pandemic. This study aimed to explore Hong Kong stroke caregivers' caregiving experiences in the midst of this difficult time. METHODS: Individual semistructured interviews were conducted with 25 Chinese adult primary stroke caregivers from May to June 2020 via telephone. Interviews were transcribed verbatim and analyzed using an interpretive description approach and constant comparison strategy. RESULTS: Five themes of the stroke caregiving experience during the COVID-19 pandemic emerged: care service adversities, additional caregiving workload and strain, threatened relationship between caregiver and stroke survivors, threats to caregivers' physical and psychological well-being, and needs for continuing caregiving roles. Our findings suggested that caregivers have worsened physical and psychological well-being because of increases in care burden with simultaneously reduced formal and informal support. The relationship between caregiver and stroke survivor was subsequently affected, placing some survivors at heightened risk of abuse. CONCLUSIONS: Our study provides valuable findings about stroke caregiving experiences and needs during the pandemic. Delivery of psychological support, telemedicine, and household hygiene resources would be useful to mitigate caregivers' psychological distress during the COVID-19 pandemic.

Social Media in Neurosurgery: A Systematic Review.

OBJECTIVE: Social media has been used increasingly in neurosurgery by individuals. We aimed to identify demographics and preferences of social media use, describe the scope of social media use, and characterize its utility. METHODS: A systematic review was conducted using PubMed, Embase, and Scopus databases. Titles and abstracts from articles identified in the search were read and selected for full-text review. Studies meeting prespecified inclusion criteria were reviewed in full and analyzed for relevant data. RESULTS: Of 431 resultant articles, 29 were included. Patients and caregivers most commonly used Facebook and Twitter, whereas nearly 50% of neurosurgeons used LinkedIn and Doximity. Patient and caregiver users of social media tended to be <35 years old. Content of posts varied from requesting/providing information (∼40%) to seeking emotional support/forming connections (∼30%). A total of 20.6% of videos were irrelevant to clinical neurosurgery. Factual accuracy of most videos was poor to inadequate. Social media use was associated with greater academic impact for neurosurgical departments and journals. Posts with photos and videos and weekend posts generated 1.2-2 times greater engagement. CONCLUSIONS: Patients and caregivers who use social media are typically younger than 35 years old and commonly use Facebook or Twitter. Neurosurgeons prefer Doximity and LinkedIn. Social media yields information regarding common symptoms and uncovers novel symptoms. Videos are poor-to-inadequate quality and often irrelevant to clinical neurosurgery. Optimizing social media use will augment the exchange of ideas regarding clinical practice and research and empower patients and caregivers.

Using a Mechanical Lift at Home.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Brief Report: What Happens After School? Exploring Post-school Outcomes for a Group of Autistic and Non-autistic Australian Youth.

Young autistic Australians are less likely to attend higher education and have lower employment rates than non-autistic Australians (in: Australian Bureau of Statistics, Survey of disability, ageing and carers Australia: Summary of Findings 2018. Australian Bureau of Statistics, Canberra, 2019a). Few studies have examined post-school outcomes among this population. Using data from the first phase of a national longitudinal study including autistic (n = 79) and non-autistic (n = 107) 17-25-year olds, we found young autistic adults were (a) less likely to be employed, (b) more likely to attend technical and further education (TAFE) than university, (c) more likely to enrol in higher education on a part-time basis and (d) less likely to be engaged in both higher education and employment, than their non-autistic peers. Findings highlight a need to understand post-school trajectories of young autistic adults.

Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver.

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.

O cuidado com o idoso fragilizado e a estratégia saúde da família: perspectivas do cuidador informal familiar / Atención al adulto mayor frágil y estrategia de salud de la familia: perspectivas de los cuidadores / Care for fragile elderly people and the family health strategy: perspectives of caregivers

Objetivo: compreender o cuidado com o idoso fragilizado prestado por cuidadores informais familiares, bem como a interação destes com a Estratégia Saúde da Família, na perspectiva dos cuidadores. Método: estudo exploratório-descritivo, qualitativo, realizado com 17 cuidadores informais familiares de idosos fragilizados de uma Estratégia Saúde da Família de Minas Gerais, Brasil. Dados coletados entre setembro/2019 e fevereiro/2020, mediante entrevista com roteiro semiestruturado e questionário. Realizou-se análise de conteúdo, tipo temática. Resultados: maioria dos cuidadores eram mulheres, 26-79 anos, brancas e pardas, casadas e baixa escolaridade. Comunicação efetiva entre equipe de saúde e cuidador familiar/idoso, em detrimento de alta rotatividade de profissionais da Estratégia Saúde da Família, demanda excessiva de funções e falta de capacitação e habilidade técnica do cuidador. Considerações finais: cuidado com idoso fragilizado pertencia ao universo feminino e suscitava um misto de sentimentos. Interação entre cuidadores e Estratégia Saúde da Família acontecia geralmente mediada pelo Agente Comunitário de Saúde.

Objetivo: comprender el cuidado de los ancianos frágiles proporcionado por los cuidadores internados relacionados con la familia, así como su interacción con la Estrategia de Salud de la Familia, desde la perspectiva de los cuidadores. Método: estudio exploratorio-descriptivo, cualitativo, realizado con 17 informadores familiares de ancianos frágiles de una Estrategia de Salud de la Familia en Minas Gerais, Brasil. Datos recolectados entre Septiembre/2019 y Febrero/2020, a través de una entrevista con guión semiestructurado y cuestionario. Se realizó un análisis de contenido, tipo temático. Resultados: la mayoría de los cuidadores eran mujeres, de 26 a 79 años, blancas y marrones, casadas y de baja escolaridad. Comunicación efectiva entre el equipo de salud y el cuidador familiar/anciano, en detrimento de la alta rotación de profesionales de la Estrategia de Salud de la Familia, la excesiva demanda de funciones y la falta de capacitación y capacidad técnica del cuidador. Consideraciones finales: el cuidado de los ancianos frágiles pertenecía al universo femenino y despertaba una mezcla de sentimientos. La interacción entre los cuidadores y la estrategia de salud de la familia fue generalmente mediada por el Agente Comunitario de Salud.

Objective: to understand the care for the frail elderly provided by family-related inpatient caregivers, as well as their interaction with the Family Health Strategy, from the perspective of caregivers. Method: exploratory-descriptive, qualitative study conducted with 17 informal family-related caregivers of frail elderly from a Family Health Strategy in Minas Gerais, Brazil. Data collected between September/2019 and February/2020, through an interview with semi-structured script and questionnaire. Content analysis was performed, thematic type. Results: most caregivers were women, 26-79 years old, white and brown, married and low schooling. Effective communication between the health team and the family/elderly caregiver, to the detriment of high turnover of professionals of the Family Health Strategy, excessive demand for functions and lack of training and technical ability of the caregiver. Final considerations: care for the frail elderly belonged to the female universe and aroused a mixture of feelings. Interaction between caregivers and family health strategy was generally mediated by the Community Health Agent.

Perspective of an International Online Patient and Caregiver Community on the Burden of Spasticity and Impact of Botulinum Neurotoxin Therapy: Survey Study.

BACKGROUND: Patient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients' daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development. OBJECTIVE: The objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL), as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions. METHODS: We performed a noninterventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients' lives, and the potential benefits of fewer injections. RESULTS: There were 615 respondents (427 patients and 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients' and caregivers' lives, including the ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients. CONCLUSIONS: Spasticity has a negative impact on both patients' and caregivers' lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment, implying that a longer-acting BoNT-A injection would be well received.

Impact of COVID-19 pandemic on pediatric patients with epilepsy - The caregiver perspective.

The recent COVID-19 pandemic has disrupted care systems around the world. We assessed how the COVID-19 pandemic affected children with epilepsy in Italy, where lockdown measures were applied from March 8 to May 4, 2020. We compiled an Italian-language online survey on changes to healthcare and views on telehealth. Invitations were sent to 6631 contacts of all patients diagnosed with epilepsy within the last 5 years at the BambinoGesù Children's Hospital in Rome. Of the 3321 responses received, 55.6% of patients were seizure-free for at least 1 year before the COVID-19-related lockdown, 74.4% used anti-seizure medications (ASMs), and 59.7% had intellectual disability. Only 10 patients (0.4%) became infected with Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2). Seizure frequency remained stable for most patients during the lockdown period (increased in 13.2%; decreased in 20.3%), and seizure duration, use of rescue medications, and adherence to treatment were unchanged. Comorbidities were more affected (behavioral problems worsened in 35.8%; sleep disorder worsened in 17.0%). Visits were canceled/postponed for 41.0%, but 25.1% had remote consultation during the lockdown period (93.9% were satisfied). Most responders (67.2%) considered continued remote consultations advantageous. Our responses support that patients/caregivers are willing to embrace telemedicine for some scenarios.

Hoping for the best, planning for the worst: Palliative care approach to Parkinson disease during the COVID-19 pandemic.

Palliative care emphasizes expertise in handling difficult conversations, discussing patients' wishes and supporting the caregiver(s). Here we outline the palliative approach of hoping for the best while preparing for the worst in several "what if" scenarios for people with Parkinson disease and their families during the COVID-19 pandemic.