Cluster analysis of symptoms and assessment of caregiver reports in pediatric foreign bodies.

Foreign body (FB) ingestion and aspiration are frequent causes of pediatric emergency room visits, with significant morbidity and mortality risks. This cross-sectional study analyzed 1,052 pediatric patients admitted for suspected FB events at a single institution between 2008 and 2015, including 886 cases of suspected ingestion and 166 cases of suspected aspiration. Cluster analysis identified three distinct clusters for both groups, with respiratory symptoms being predominant in clusters with worse outcomes. The respiratory clusters were associated with increased complication rates (13.0% for aspiration, 3.6% for ingestion) and all mortalities (three in aspiration and two in ingestion). In ingestion cases, Respiratory Cluster patients showed increased complications, prolonged hospital stays (mean 55.1 h), and accounted for all mortalities, a relationship not previously reported. Caregiver-reported certainty of event occurrence showed moderate sensitivity (72.5%) and low specificity (45.4%) for aspiration, and higher sensitivity (86.8%) with lower specificity (19.8%) for ingestion. Decision Curve Analysis revealed a net benefit in utilizing caregiver certainty for clinical decision-making. Confirmatory radiographic findings were commonly observed in ingestion cases (84.2%) than in aspiration cases (37.7%), likely due to the higher incidence of metal ingestions compared to mostly organic aspirations. Endoscopic management had high success rates (97.6%), and low mortality, highlighting its central role in FB treatment. These findings underscore the importance of assessing respiratory symptom severity within the broad clinical spectrum of FBs to identify patients at risk of worse clinical outcomes, which helps prioritize resources when necessary. Caregiver-reported information has been shown to be valuable in guiding diagnostic decisions.

Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity.

OBJECTIVE: To uncover the values and preferences of the caregivers for children with medical complexity using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis that will inform the future development of a decision support tool in this population. STUDY DESIGN: We conducted a qualitative study of semistructured interviews of English- and Spanish-speaking caregivers of children with neuromuscular scoliosis from 2 geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was on the basis of grounded theory with synthesized caregiver values and preferences themes. RESULTS: From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2 years, were mostly White (66%), and had children with a mean age of 15.6. In total, 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socioemotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities. CONCLUSIONS: Caregivers of children with medical complexity may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.

The Brazilian version of the Johns Hopkins dementia care needs assessment (JHDCNA-br 2.0): translation, cultural adaptation, and preliminary psychometric testing.

OBJECTIVES: People with dementia have several unmet needs during the syndrome progression. More unmet needs are related to hospitalizations, injuries, and death. Little is known about the care needs for people living with dementia in Brazil. This study aims to translate and adapt the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0), a tool design to identify the dementia-related needs of people with dementia and their caregivers, to Brazilian Portuguese, and to verify psychometric properties. METHOD: JHDCNA 2.0 underwent a translation, back-translation, and cultural adaptation. Preliminary psychometric testing of the Brazilian version (JHDCNA-Br 2.0) included pilot testing and experts' assessment, analyses of reliability, evidence based on test content and relations to other variables. We conducted 140 in-home interviews to assess several sociodemographic and health aspects and to be able to complete the JHDCNA-Br 2.0. RESULTS: The JHDCNA-Br 2.0 is reliable and has evidence based on test content and on relations to other variables for people living with dementia and caregivers. Preliminary results suggest high prevalence of unmet needs. CONCLUSION: JHDCNA-Br 2.0 is a reliable and valid tool. The availability of this tool brings new opportunities to the study of dementia care, taking into consideration cultural aspects and may help inform future approaches to dementia care delivery to support persons and families affected by these conditions.

The impact of caregiver training on the oral health of people with disabilities: A systematic review.

AIMS: This systematic review aimed to assess the impact of oral health training for caregivers of individuals with disabilities. MATERIALS AND METHODS: A systematic review was conducted using five electronic databases: Medline (PubMed), SciELO, Web of Science, LILACS, and CAFe, adhering to PRISMA guidelines. The PICO strategy was defined as follows: Participants: caregivers of individuals with disabilities; Intervention: training or education in oral health for caregivers; Control: no caregiver training; and Outcomes: evaluating whether oral health training for caregivers improves the oral health of people with disabilities. The study aimed to address the research question: "What is the impact of oral health training for caregivers of individuals with disabilities?" The study was preregistered in PROSPERO (CRD42023416760). RESULTS: A total of 14 studies were included, with trained caregivers being either staff members or parents, and various disabilities reported, with cerebral palsy being the most prevalent. Caregiver training methods varied, such as instructions on the importance of oral health care, supervised oral hygiene, and demonstration of toothbrushing techniques. Overall, the intervention groups showed an improvement in measures such as to the Gingival Index, Plaque Index, Simplified Oral Hygiene Index, and Gingival Bleeding Index on upon probing. Additionally, improvements were observed in the quality, frequency, and duration of toothbrushing among intervention groups. CONCLUSION: The findings suggest that oral health training for caregivers has a positive impact on the oral health of individuals with disabilities, potentially leading to better oral health outcomes.

Family Management of Hypertension in Brazil: A Cross-Sectional Study.

In Brazil, research indicates that primary family members are the main source of support for individuals with chronic conditions such as hypertension (HTN). The burden of caregiving not only hinders effective HTN management but can also cause stress and anxiety, potentially leading to HTN in caregivers. Despite this, few studies have explored the impact of caregiving on these family members. Aims of the study were to: (1) Describe the prevalence of blood pressure (BP) control in family members of individuals with HTN; (2) identify family member perspectives on facilitators and barriers to HTN management; and (3) identify influences that help or interfere with family member functioning (levels of stress, quality of life [QOL], and caregiver burden). This descriptive, cross-sectional study included 213 family members randomly selected from 3 Family Health Strategy units. Family members were largely female (n = 143; 67.1%); the mean age was 60.1 years (SD ± 17.02) and 42.6% (n = 96) had less than a high school education. The three most important facilitators and barriers were related to medication, medical visits, healthy eating, physical activity, and stress. The mean systolic BP was 132.7 (SD ± 21.9) mmHg and a diastolic BP of 85.9 (SD ± 18.1) mmHg with 120 (56.3%) of family members classified as having normal BP. In regard to family member contributions to the self-care of the individual with HTN, family members displayed low levels of self-care maintenance (n = 148; 69.4%) and management (n = 47; 71.2%) support, while a slight majority (n = 114; 53.5%) had adequate levels of self-care confidence in supporting the individual with HTN. Family members (n = 189; 88.8%) showed moderate-to-high levels of perceived stress, but good physical (n = 189; 88.7%) and mental QOL (n = 196; 92%) and low levels of caregiver burden (n = 113; 53.1%). A variety of contextual sociocultural influences were associated with the outcomes under study. Family-based interventions are urgently needed to address the inadequate management of HTN.

Good Friends and Good Neighbors: Social Capital and Food Insecurity in Families with Newborns.

OBJECTIVE: To examine the association between social capital and household food insecurity among US families with newborns. STUDY DESIGN: This cross-sectional analysis used enrollment data from 881 newborn-caregiver dyads at 6 geographically-diverse US academic sites enrolled in the Greenlight Plus Trial, a comparative effectiveness trial to prevent childhood obesity. Ordinal proportional-odds models were used to characterize the associations of 2 self-reported measures of social capital: (1) caregiver social support and (2) neighborhood social cohesion, with household food insecurity after controlling for sociodemographic characteristics. RESULTS: Among 881 newborn-caregiver dyads (49% Hispanic, 23% non-Hispanic White, 17% non-Hispanic Black; 49% with annual household income <$50 000), food security was high for 75%, marginal for 9%, low for 11% and very low for 4%. In covariate-adjusted analyses, caregivers with a low social support score of 18 had 5 times the odds (aOR = 5.03 95% CI = 3.28-7.74) of greater food insecurity compared with caregivers with a high social support score of 30. Caregivers with a low neighborhood social cohesion score of 10 had nearly 3 times the odds (aOR = 2.87 95% CI 1.61-5.11) of greater food insecurity compared with caregivers with a high neighborhood social cohesion score of 20. These associations remained robust when both social capital measures were included in one model. CONCLUSIONS: Caregiver social support and neighborhood social cohesion each appear to be inversely associated with food insecurity among US families with newborns. Longitudinal research is needed to determine the directionality of these relationships and whether improving social capital for families with young children reduces household food insecurity.

Effects of aromatherapy on the overload and fatigue of informal elderly caregivers: a pilot study.

OBJECTIVE: To verify the effect of aromatherapy (inhaled or via the skin) with lavender, sweet orange and bergamot essential oils on caregivers' overload and fatigue. METHOD: Pilot, quasi-experimental, randomized, non-blind and parallel study with two groups. The reduced Zarit Burden Interview and Revised Piper scales were used, comparing the effect of two routes of administration. The recommendations of the Consolidated Standards of Reporting Trials were respected. Final sample with 23 caregivers of elderly people cared for by the Home Care Program of a University Hospital, in the city of São Paulo, between May and September 2021. To analyze the outcome after 21 days, the Wilcoxon test was used to compare the effects. For the linear model, and for the variable perceived duration of fatigue, the Cumulative Link Mixed Model was used. The significance level adopted was 5%. RESULTS: Temporal perceptions of fatigue were reduced throughout the study for the groups. However, there was no decrease in overload or fatigue, regardless of the moment and groups. CONCLUSION: Overload and fatigue were reduced in the group that received the treatment through inhalation, showing no statistical significance.

Effectiveness of care provided by an itinerant community caregiver in reducing the burden and violence of family caregivers of impaired elderly in Rio de Janeiro, Brazil: A randomized clinical trial.

INTRODUCTION: The aging population and the rise in chronic diseases are linked to a higher number of elderly individuals with impairments. These individuals often depend on family caregivers for basic daily activities, which can impose a significant burden and increase the risk of violence against them. OBJECTIVE: To assess the effectiveness of itinerant community caregivers (ICC) in reducing burden, depression and risk of violence among family caregivers of impaired elderly (FCIE), while also increasing their social support. METHODS: Randomized controlled trial with 38 pairs of elderly people and their caregivers. For six months, twice a week, the ICC spent three hours with the elderly, completing tasks given by the FCIE. The primary outcomes were reduction of at least one level in the burden, and or in the risk of violence against the elderly. The secondary outcomes were a decrease in depressive symptoms and/or an increase in social support. Multiple log binomial regression models were used to assess the relationship between the predictors and the response variables. RESULTS: In the FCIE group, most individuals providing care were women who spent over 16 hours each day in the task of caring for the impaired elderly, with most falling between the ages of 41 and 60. Over half of them were children of the elderly participants. In the intervention group, there was a significant decrease in the likelihood of violence against the elderly, with a 10-fold reduction. However, other endpoints did not present significant changes. CONCLUSION: The involvement of an ICC in the care of impaired elderly can contribute to reducing domestic violence by FCIE.

Cartilla para el fortalecimiento de la crianza rn parentalidad positiva dirigido a madres, padres y cuidadores / Booklet for strengthening positive parenting aimed at mothers, fathers and caregivers

La presente publicación describe una propuesta de intervención grupal centrada en la adquisición de conocimientos y entrenamiento de habilidades bajo una metodología activa, reflexiva y transformadora para fortalecer las habilidades de crianza de madres, padres y/o cuidadores. Ser madre, padre o cuidador/a constituye una de las tareas más importantes en la vida de una persona, dado que, de su desempeño depende en gran medida el futuro que afectan el desarrollo psicosocial de las niñas, niños y adolescentes

Adaptación transcultural y validación de cuestionarios WPAI (Work Productivity and Activity Impairment) para cuidadores de pacientes con enfermedad inflamatoria intestinal pediátrica en España. Estudio multicéntrico / Cross-cultural adaptation and validation of Work Productivity and Activity Impairment questionnaires for caregivers of patients with pediatric inflammatory bowel disease in Spain. A multicenter study

Introducción. Los cuestionarios WPAI-UC/CD-Caregiver evalúan la repercusión laboral y en actividades cotidianas de los padres/cuidadores de pacientes con colitis ulcerosa (CU) o enfermedad de Crohn (EC). El objetivo fue adaptar y validar estos cuestionarios en la población española. Métodos. Se realizó la traducción y la retrotraducción. El documento fue evaluado por un comité de expertos y por un grupo piloto de familias de pacientes con enfermedad inflamatoria intestinal pediátrica (EII-p). Para la validación, se reclutaron padres/cuidadores de pacientes con EII-p (10-18 años). El comité de expertos y el grupo piloto evaluaron subjetivamente el formato y el tiempo necesario para completar los cuestionarios. Se calculó el coeficiente alfa de Cronbach y se realizó el análisis factorial con rotación Varimax. Se calcularon los coeficientes de Kaiser-Meyer-Olkin (KMO) y la prueba de esfericidad de Bartlett para comprobar la adecuación del análisis factorial. Resultados. Se incluyeron 370 pacientes (mediana 14,1 años), y 263 padres/cuidadores de pacientes con colitis ulcerosa o EII no clasificada y 261 padres/cuidadores de pacientes con enfermedad de Crohn. Los coeficientes KMO (0,6947 y 0,7179) y la prueba de esfericidad de Barttlet (p <0,001) confirmaron la adecuación del análisis factorial. Los 6 ítems se dirigieron a la misma dimensión. El modelo factorial explicó el 99,99 % y el 94,68 % de la varianza, y los alfa de Cronbach (0,6581 y 0,6968) indicaron buena consistencia. El formato y la mediana de 2 minutos para completarlos se consideraron óptimos. Conclusiones. Las versiones validadas en la población española de los cuestionarios WPAI-Caregiver pueden considerarse para su uso en familias con hijos con EII.

Introduction. The WPAI-UC/CD-Caregiver questionnaires assess the impact of ulcerative colitis (UC) or Crohn's disease (CD) on parents'/caregivers' work life and daily activities. Our objective was to adapt and validate these questionnaires in the Spanish population. Methods. A translation and back-translation were done. The document was assessed by an expert committee and a pilot group of families of patients with pediatric inflammatory bowel disease (p-IBD). For validation, the parents/caregivers of patients with p-IBD (10­18 years old) were recruited. The expert committee and the pilot group conducted a subjective assessment of the format and time necessary to complete the questionnaires. Cronbach's alpha coefficient was estimated and a factor analysis with varimax rotation was done. KaiserMeyer-Olkin (KMO) coefficients and Bartlett's sphericity test were estimated to test the adequacy of the factor analysis. Results. A total of 370 patients (median age: 14.1 years) and 263 parents/caregivers of patients with UC or unclassified IBD and 261 parents/caregivers of patients with CD were included. The KMO coefficients (0.6947 and 0.7179) and Bartlett's sphericity test (p < 0.001) confirmed the adequacy of the factor analysis. The 6 items targeted the same domain. The factor model accounted for 99.99% and 94.68% of variance, and Cronbach's alpha coefficients (0.6581 and 0.6968) showed an adequate consistency. The format and the median time of 2 minutes to complete the questionnaires were considered optimal. Conclusions. The versions of the WPAI-Caregiver questionnaires validated in the Spanish population may be used in families whose children have IBD.

Motivational interviewing at home: A community trial to improve oral health literacy and reduce morbidity in disadvantaged Chilean families.

BACKGROUND: Limited evidence exists regarding the effects of home-based interventions on oral health outcomes in preschool-aged children or caregivers despite the success of such interventions in other child and pregnancy health outcomes. The aim of this community trial was to assess the impact after 12 months of a home-delivered motivational interviewing (MI) intervention on oral health outcomes in disadvantaged Chilean families. METHODS: This trial was conducted with a community single-blinded design, including preschoolers (aged 2-4 years) and their caregivers from 2 disadvantaged communities who received either the MI intervention or standard oral health interventions at kindergartens. The MI intervention comprised from 4 through 6 tailored home visits by MI-trained dental hygienists. Data on socioeconomic-demographic factors, caries (International Caries Detection and Assessment System [ICDAS]), oral hygiene, and caregivers' oral health literacy (OHL) (assessed with Oral Health Literacy Instrument and Rapid Estimate of Adult Literacy in Dentistry, 30 items) were collected at baseline and 12-month follow-up. RESULTS: Two hundred fifty-two dyads completed baseline measurements, and 212 completed the follow-up (control, n = 104; intervention, n = 108). Weak associations were found between clinical-sociodemographic factors and OHL at baseline (correlations, < 0.3) and follow-up. Analysis of covariance revealed a reduction in caries incidence for lesions with ICDAS scores above 0 (P = .03) but not for ICDAS scores above 2 (P = .47). No reduction in oral hygiene was observed (P = .74). Oral Health Literacy Instrument scores showed no improvement (P = .10), and Rapid Estimate of Adult Literacy in Dentistry, 30 items scores showed a marginal increase (P = .03). CONCLUSIONS: Home-delivered MI intervention had a marginal impact on preschoolers' caries incidence and caregivers' OHL but no effect on preschoolers' oral hygiene, with the primary impact observed at the level of caries ICDAS scores above 0. PRACTICAL IMPLICATIONS: Home-delivered MI interventions by dental hygienists marginally reduce caries incidence in preschoolers from disadvantaged populations. This trial was registered at the Australian and New Zealand Clinical Trials Registry. The registration number is ACTRN12615000450516.

Nurturing care: perceptions and practices of caregivers for children under five in the Ecuadorian highlands - a qualitative study.

Introduction: The importance of nurturing care for child development is well-established, and parents play a central role in providing this care. However, cultural values and traditions can influence child-rearing practices, and there are gaps in child welfare in Ecuador. Two research questions delve into caregivers' definitions of nurturing care for children aged 0-5 and its alignment with World Health Organization's concept. Methods: A qualitative methodology was applied to comprehensively explore caregivers' perspectives and application of nurturing care across diverse cultural contexts in rural areas of Cotopaxi and Loja in Ecuador. Using snowball sampling primary caregivers, healthcare professionals, childcare workers, and community leaders were interviewed and participated in focus groups, examining its congruence with WHO's Nurturing Care Framework for Early Childhood Development. Results: While there is alignment with the WHO framework, the study reveals challenges such as a lack of awareness of the term "nurturing care" among participants. Findings also indicate issues in health communication, reliance on traditional medicine, and myths around nutritional practices. The role of technology in early learning is explored, noting both its advantages and disadvantages. Notably, preventive health activities were not mentioned, emphasizing a universal need for knowledge. Conclusion: This study urges tailored interventions for nurturing care, emphasizing success tied to robust healthcare and child protection. Urgency lies in cultural sensitivity, local adaptation, and targeted training for implementation. These insights contribute significantly to the global discourse, stressing the importance of context-specific approaches. Implications are crucial for policymakers, practitioners, and researchers dedicated to elevating care quality for vulnerable populations worldwide.

Stress and Self-Efficacy in Parents/Caregivers and Oral Health of Individuals with Down Syndrome During the COVID-19 Pandemic: A Cross-Sectional Study.

The family of individuals living with Down Syndrome (DS) often demonstrate high levels of stress associated with the demand for care and difficulties experienced in everyday life. The aim of this cross-sectional study was to assess perceived stress by parents/caregivers of individuals with DS and its association with general perceived self-efficacy and dental outcomes, considering the COVID-19 pandemic's impacts on family's daily activities and finances. A sample of 257 parents/caregivers answered a questionnaire with socioeconomic, dental, and behavioral variables and the short version of the Perceived Stress Scale and the General Perceived Self-Efficacy Scale. The sample was divided into three groups based on perceived stress levels. Associated variables were evaluated using multinomial logistic regression (level of significance 5%), adjusting for socioeconomic factors. The mean perceived stress score was 17.84 ± 5.75 (0-39). Medium stress (second tertile) was associated with finger/nail biting in individuals with DS (OR = 2.05; 95%CI 1.04-4.03; p = 0.038), difficulty in performing oral hygiene (OR = 2.39; 95%CI 1.23-4.65; p = 0.011) and medium and high self-efficacy (OR = 0.12; 95%CI 0.05-0.31; p < 0.001 and OR = 0.38; 95%CI 0.15-0.98; p = 0.046, respectively); high stress (third tertile) was associated with medium and high self-efficacy (OR = 0.25; 95%CI 0.09-0.67; p = 0.006 and OR = 0.05; 95%CI 0.02-0.15; p < 0.001, respectively) and negative impact of COVID-19 in family finances (OR = 3.00; 95%CI 1.39-6.44; p = 0.005). It was concluded that parents/caregivers' perceived stress was averaged and associated with self-efficacy, finger/nail biting, oral hygiene demands, and the financial impact of COVID-19.

Social and Emotional Self-perception in People With Mild to Moderate Alzheimer Disease Compared to Caregiver's Perspective in Brazil.

INTRODUCTION: There was limited evidence on the ability of people with Alzheimer disease (AD) to perceive their own emotions. We aimed to compare socioemotional self-perception in persons with mild and moderate AD to their caregivers' perspective. METHOD: Cross-sectional assessment of people with mild (n=102) and moderate (n=59) AD and caregivers. Each participant and their caregivers completed the socioemotional questionnaire (SEQ); a 30-item rating scale assessing five dimensions of socioemotional cognition (empathy, emotion recognition, social conformity, antisocial behavior, sociability). We evaluated global cognition, awareness of disease, dementia severity, functionality, neuropsychiatric symptoms, and caregiver burden. RESULTS: Participants in the mild and moderate groups showed a similar pattern of socioemotional self-perception. They differed in the anger domain of the emotion recognition subscale, in the antisocial behavior dimension, and in the sociability subscale. In contrast, the caregivers' perspective of people with mild and moderate AD showed a significant difference in the emotion recognition domain for fear, disgust, and sadness. There were also significant differences in the empathy subscale for disgust and in the sociability subscale. Cognition was correlated with self-reported reduced perception in social conformity, antisocial behavior, and sociability. Awareness was correlated with emotion recognition, antisocial behavior, and sociability. Neuropsychiatric symptoms were correlated with empathy, emotion recognition, and social conformity. CONCLUSIONS: Significant differences were found between caregivers' perspectives of socioemotional functioning in people with mild and moderate AD. Meanwhile, there were minimal differences in self-perception between the mild and moderate groups.

Parental emotions in families of children and adolescents with and without autism spectrum disorder.

This study assessed the influence of sociodemographic conditions, oral hygiene habits, and the socio-psychological need for orthodontic treatment on the emotions of caregivers of children with and without autism spectrum disorder (ASD). We conducted a comparative cross-sectional study with families of individuals aged 6 to 14 years at a reference center for neurodevelopmental disorders and two dental school clinics in northeastern Brazil. Caregiver emotions were assessed using the 'Parental Emotions' domain of the Family Impact Scale (FIS). We analyzed sociodemographic variables, oral hygiene habits, and sociopsychological need for orthodontic treatment using the esthetic component of the Index of Orthodontic Treatment Need (IOTN). We used descriptive and hierarchical Poisson regression analyses with robust variance (α = 5%). The study included 144 families evenly distributed across the groups. The caregiver group with ASD demonstrated a higher total score for parental emotions (p < 0.001). Factors associated with this factor included caregiver responsible for brushing (PR = 1.34; 95%CI: 1.12-1.59), mandatory need for orthodontic treatment (PR = 1.25; 95%CI: 1.07-1.46), and caregivers' education up to 8 years (PR = 1.45; 95%CI: 1.02-2.07). Caregivers with lower income showed a lower prevalence of parental emotions (PR = 0.57; 95%CI: 0.35-0.93). Caregivers of children with ASD exhibited a higher emotional burden. Factors associated with parental emotions included responsibility for tooth brushing attributed to caregivers, sociopsychological need for orthodontic treatment, and family income.

[Catastrophic expenditure in children with visual impairment: a cross-sectional study with caregivers in Rio de Janeiro, Brazil]. / Gasto catastrófico em crianças com deficiência visual: estudo transversal com cuidadores no Rio de Janeiro, Brasil.

Caring for a visually impaired child can affect the caregiver's income and, in turn, the family's. Catastrophic spending resulting from increased expenses and reduced income must be taken into account, whether due to unemployment, a reduction in the number of hours worked or the difficulty of entering or reentering the job market. Given this scenario, the main objective of this study was to estimate the catastrophic spending attributed to the caregiver of blind or low-vision children in reference centers for education for the blind, ophthalmology and child health located in the city of Rio de Janeiro, Brazil, identifying which factors are associated with a higher or lower prevalence of this expenditure. It was found that 53.3% of care for blind children involved 40% or more of their income. Among the caregivers of children with low vision, catastrophic spending is milder, compromising at least 40% of income for 36.8% of the caregivers. The factors associated with a higher prevalence of catastrophic spending were the caregiver's age, the number of residents in the household, higher schooling, lower household income, renovations to the home, health insurance, taking out loans, selling assets, the number of health units where the child receives treatment and the relationship of the main caregiver. The burden placed on caregivers of visually impaired children indicates a situation of vulnerability that shows the need for access to financial and social protection mechanisms, through policies that are capable of serving this group.

O cuidado de um filho com deficiência visual pode vir a afetar a renda do cuidador e, por sua vez, a renda da família. Sob essa realidade, há de se considerar o gasto catastrófico consequente do aumento de despesas e da redução de renda, seja pelo desemprego, pela redução do número de horas trabalhadas ou pela dificuldade de (re)inserção no mercado de trabalho. Perante esse cenário, o objetivo principal deste estudo foi estimar o gasto catastrófico atribuído ao cuidador de crianças cegas ou com baixa visão em centros de referência em educação para cegos, oftalmologia e saúde infantil localizados no Município do Rio de Janeiro, Brasil, identificando quais fatores estão associados a uma maior ou menor prevalência desse gasto. Observou-se que 53,3% dos cuidados de crianças com cegueira comprometem 40% ou mais da renda. Entre os cuidadores de crianças com baixa visão, o gasto catastrófico é mais ameno, comprometendo no mínimo 40% da renda para 36,8% dos cuidadores. Os fatores associados à maior prevalência de gasto catastrófico foram idade do cuidador, número de moradores na residência, maior escolaridade, menor renda domiciliar, reformas na residência, plano de saúde, aquisição de empréstimos, venda de bens, quantidade de unidades de saúde que a criança recebe tratamento e parentesco do cuidador principal. A carga que recai sobre os cuidadores de crianças com deficiência visual indica uma situação de vulnerabilidade que mostra a necessidade de acesso aos mecanismos de proteção financeira e social, por meio de políticas que sejam capazes de atender esse grupo.

El cuidado de un niño con discapacidad visual puede impactar los ingresos del cuidador y, a su vez, de la familia. En este escenario, es necesario considerar el gasto catastrófico resultante del aumento de los gastos o la reducción de los ingresos, ya sea por desempleo, reducción del número de horas trabajadas o por la dificultad de inserción o reinserción en el mercado laboral. Ante esto, el objetivo principal de este estudio fue estimar el gasto catastrófico atribuido al cuidador de niños ciegos o con baja visión en centros de referencia en educación para ciegos, oftalmología y salud infantil, ubicados en el municipio de Río de Janeiro, Brasil, con el fin de identificar qué factores se asocian con una mayor o menor prevalencia de este gasto. Se observó que el 53,3% de los cuidados de niños con discapacidad visual comprometen más del 40% de los ingresos totales. Mientras tanto, el cuidado de niños con baja visión tiene un menor gasto catastrófico, comprometiendo menos del 40% de los ingresos según el 36,8% de los cuidadores. La mayor prevalencia de gasto catastrófico estuvo asociada a los siguientes factores: edad del cuidador, número de residentes en el hogar, mayor nivel de estudios, bajos ingresos familiares, remodelaciones en el hogar, seguro de salud, adquisición de préstamos, venta de bienes, cantidad de centros de salud en las que el niño acude al tratamiento y parentesco del cuidador principal. Los cuidadores de niños con discapacidad visual enfrentan una situación de vulnerabilidad, lo que apunta a una necesidad de acceder a acciones de protección financiera y social mediante políticas dirigidas a esta población.

Parental care experience of children with type 1 diabetes: a qualitative meta-synthesis.

OBJECTIVE: To assess qualitative studies on parents' caregiving experiences whose children have T1DM and develop personalized support strategies based on the findings. METHOD: A systematic review with meta-synthesis performed in the Cochrane Library, Embase, Scopus, CINAHL, PubMed, Web of Science, CNKI, CBM, VIP, and Wanfang databases. Quality was assessed via the JBI criteria, and meta-aggregative method was applied to categorize the results into subtopics and aggregate into three interrelated meta-topics to understand parents' caregiving experiences. RESULTS: In total, 2,100 articles were found, out of which 15 were selected and analyzed. The identified three meta-topics were "Parents facing multiple physical, mental and life challenges", "Parents' lack of a full range of external support" and "Parents' caregiving role competency enhanced to adjust to the new life". CONCLUSION: it is critical for healthcare professionals to recognize these parental experiences and offer targeted knowledge, skills training, and psychological support tailored to their needs, including group training, online mindfulness interventions, and improved empathy from the medical team.

[Preparing for the death of older adults: perspectives of primary health care teams, family members and primary caregivers]. / Preparación para la muerte de personas mayores: perspectivas de equipos de salud primaria, familiares y cuidadoras principales.

Preparing for death should be an integral part of end-of-life care and a public health concern. The objective of this study was to describe the meanings and practices of preparing for the death of older adults at the end of life from the perspectives of primary health care teams, family members and primary caregivers. A qualitative study was carried out through focus groups and individual interviews with a sample of 99 individuals, 45 primary health care professionals and technicians, 30 caregivers and 16 family members. The results were organized in three dimensions: (1) meanings about death and implications for preparing for death, highlighting the pain of death, suffering relief, and mediation of religious beliefs; (2) the practices of preparation for death of older adults, including the difficulty of talking about death, the search for tranquility and funeral preferences as a form of preparation; and (3) practices of teams that accompany caregivers and families, including psychological and spiritual support during care and the possibility of closing home care cycles during grief. The controversy of preparing for death for study participants and the challenges of primary care to include it in palliative care are discussed. In conclusion, this study shows the importance of including preparation for death strategies in the end-of-life care setting in primary care to promote a good death as an integral part of a good life.

La preparación para la muerte debe ser parte integral de los cuidados de fin de vida y una preocupación para la salud pública. El objetivo de este estudio fue describir los significados y prácticas de la preparación para la muerte de personas mayores en fin de vida desde las perspectivas de equipos de salud primaria, familiares y cuidadoras principales. Se realizó un estudio cualitativo, por medio de grupos focales y entrevistas individuales, con una muestra de 99 personas, 45 profesionales y técnicos de atención primaria de salud, 30 cuidadoras(es) y 16 familiares. Los resultados se organizaron en tres dimensiones: (1) significados sobre la muerte e implicaciones para la preparación para la muerte, destacando el dolor de la muerte, el alivio del sufrimiento y la mediación de las creencias religiosas; (2) prácticas de preparación para la muerte de las personas mayores, incluyendo la dificultad para hablar sobre la muerte, la búsqueda de la tranquilidad y las preferencias fúnebres como medios para la preparación; y (3) prácticas de los equipos de acompañamiento a las cuidadoras y familias, que incluyen el apoyo psicológico y espiritual durante el cuidado y la posibilidad de cerrar los ciclos de asistencia domiciliaria durante el duelo. Se discute la controversia de la preparación para la muerte para los participantes del estudio y los desafíos de la atención primaria para incluirla dentro de los cuidados paliativos. En conclusión, este estudio muestra la importancia de incluir estrategias de preparación para la muerte en el ámbito de los cuidados de fin de vida en la atención primaria, para promover el buen morir como parte integral del buen vivir.

A preparação para a morte deve ser parte integrante dos cuidados no fim da vida e uma preocupação de saúde pública. O objetivo deste estudo foi descrever os significados e as práticas de preparação para a morte de pessoas idosas no final da vida a partir das perspectivas das equipes de atenção primária à saúde, dos familiares e dos cuidadores primários. Foi realizado um estudo qualitativo por meio de grupos focais e entrevistas individuais com uma amostra de 99 pessoas, 45 profissionais e técnicos da atenção primária à saúde, 30 cuidadores e 16 familiares. Os resultados foram organizados em três dimensões: (1) significados sobre a morte e implicações para a preparação para a morte, destacando a dor da morte, o alívio do sofrimento e a mediação de crenças religiosas; (2) as práticas de preparação para a morte dos idosos, incluindo a dificuldade de falar sobre a morte, a busca de tranquilidade e as preferências funerárias como forma de preparação; e (3) práticas de equipes que acompanham cuidadores e famílias, incluindo apoio psicológico e espiritual durante o atendimento e a possibilidade de fechar ciclos de atendimento domiciliar durante o luto. A controvérsia da preparação para a morte para os participantes do estudo e os desafios da atenção primária para incluí-la nos cuidados paliativos são discutidos. Em conclusão, este estudo mostra a importância de incluir estratégias de preparação para a morte no cenário de cuidados no final da vida na atenção primária para promover uma boa morte como parte integrante de uma boa vida.

Post-informal caregiver's perspectives and experiences of the support network: a systematic literature review and meta-synthesis.

OBJECTIVE: To examine and synthesize the evidence of experiences and perspectives on the specific context of informal post-care and the existing support network. METHOD: This is a qualitative systematic review with metasynthesis, according to the framework of the JBI, carried out in the CINAHL, LILACS, MEDLINE, BVS and PsycINFO databases, with no time limit. The articles were evaluated using the JBI Qualitative Data Extraction Tool. A total of 1,236 articles was identified, of which 18 were selected and 7 were analyzed. The level of evidence found was moderate. RESULTS: The experiences and perspectives of the informal post-caregiver reveal the need for support, namely: in personal development - attribution of meaning, in self-care perspectives and in identity reconstruction; in managing the impact of the legacy of caring - discontinuity of support in the trajectory of caring, financial vulnerability, and the impact on mental health; formal and informal resources for the future - projection of the future, structured services and family and community support. CONCLUSION: Post-caregivers' perception of their support network is that their individual and interpersonal needs are not identified, and that formal and informal services are not articulated.

Experiences of caregivers of patients with noncancer diseases readmitted to an emergency department at the end of life.

BACKGROUND: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America. METHODS: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4. RESULTS: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end. CONCLUSION: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope.