Rol comunicativo del cuidador en pacientes con accidente cerebrovascular, Sincelejo, Colombia / The communicative role of caregivers assisting stroke patients from Sincelejo, Colombia / Papel comunicativo do cuidador em pacientes com acidente vascular cerebral, Sincelejo, Colômbia

Introducción: Las enfermedades cerebrovasculares son consideradas un problema de salud pública que afectan muchas capacidades en el individuo, entre ellas la comunicación; de esta manera el cuidador cumple un papel fundamental en su recuperación. Objetivo: Describir el rol comunicativo del cuidador en la atención a pacientes con secuelas de accidente cerebrovascular en la ciudad de Sincelejo, Colombia. Materiales y métodos: Paradigma positivista, enfoque cuantitativo y estudio descriptivo de corte transversal realizado con 40 cuidadores, seleccionados según muestreo por criterios y reclutamiento en cadena. Se utilizó una encuesta sociodemográfica, una sobre favorecimiento y bienestar comunicativo y Escala Likert, se realizó análisis de fiabilidad y consistencia interna del instrumento. Resultados: Predominaron cuidadores de sexo femenino, sobresale el cuidador informal, con estudios de secundaria y estrato socioeconómico bajo. Se encontró una actitud favorable en la competencia del ser y saber hacer, prima el buen trato, justicia y respeto. La competencia del saber evidenció actitud desfavorable, caracterizada por un conocimiento limitado frente a la patología, insuficientes destrezas, técnicas y habilidades para cumplir sus funciones y estrategias empleadas. Conclusión: Es necesario cualificar al cuidador en la atención del paciente con accidente cerebrovascular, mediante programas de que dinamicen la competencia del ser, saber y saber hacer

Introduction: Cerebrovascular diseases are a public health problem affecting the different capabilities of patients, including communication. Thus, caregivers play a fundamental role in their recovery. Objective: To describe the communicative role of caregivers in the support of patients with stroke sequelae in the city of Sincelejo, Colombia. Materials and methods: A positivist paradigm, quantitative approach, and descriptive cross-sectional study was carried out with 40 caregivers, who were selected according to criteria sampling and chain recruitment. A sociodemographic survey about favorability and communicative well-being as well as the Likert Scale were applied. A reliability and internal consistency analysis was conducted. Results: The majority of caregivers were women. Informal caregivers, with high school education, and belonging to low socioeconomic status were also predominant. A positive attitude regarding competences such as being and knowing what to do; appropriate treatment of patients, with justice and respect, were observed as common features. The knowledge competence was considered unfavorable, which was characterized by limited understanding regarding pathology, strategies used, and insufficient skills, techniques, and abilities to fulfill their functions. Conclusions: Caregivers of stroke patients should be qualified through programs that improve the being, knowing, and knowing how to do competencies.

Introdução: As doenças cerebrovasculares são consideradas um problema de saúde pública que afeta diversas capacidades do indivíduo, incluindo a comunicação; desta forma, o cuidador desempenha um papel fundamental na sua recuperação. Objetivo: Descrever o papel comunicativo do cuidador no cuidado de pacientes com sequelas de acidente vascular cerebral na cidade de Sincelejo, Colômbia. Materiais e métodos: Paradigma positivista, abordagem quantitativa e estudo transversal descritivo realizado com 40 cuidadores, selecionados segundo critérios de amostragem e recrutamento em cadeia. Foi utilizado um inquérito sociodemográfico, um de favorabilidade e bem-estar comunicativo e uma Escala Likert, foi realizada uma análise da fiabilidade e consistência interna do instrumento. Resultados: Predominaram cuidadores do sexo feminino, destacando-se os cuidadores informais, com escolaridade média e baixo nível socioeconômico. Encontrou-se na competição uma atitude favorável por ser e saber fazer, prevalecendo o bom tratamento, a justiça e o respeito. A competência conhecimento apresentou atitude desfavorável, caracterizada por conhecimento limitado sobre a patologia, habilidades, técnicas e habilidades insuficientes para cumprir suas funções e estratégias utilizadas. Conclusões: É necessário qualificar o cuidador no cuidado ao paciente com AVC, por meio de programas que potencializem a competência de ser, saber e saber fazer.

Relação entre apoio social e sono de pessoas idosas cuidadoras em vulnerabilidade social / Relationship between social support and sleep of elderly caregivers in social vulnerability / Relación entre apoyo social y sueño de adultos mayores cuidadores con vulnerabilidad social

Objetivo: analisar a relação entre apoio social e qualidade do sono de pessoas idosas que cuidam de outros idosos em ambiente de vulnerabilidade social. Método: estudo transversal realizado com 65 cuidadores entrevistados por meio de instrumento de caracterização, Índice de Katz, Escala de Lawton e Brody, Índice de Qualidade do Sono de Pittsburgh e Escala de Apoio Social do Medical Outcomes Study, com dados analisados com testes de comparação e de correlação. Resultados: a maioria eram mulheres, cônjuges do idoso cuidado e possuíam sono de má qualidade. Observou-se correlação fraca e inversa entre má qualidade do sono e a dimensão interação social positiva (Rho=-0,27; p=0,028). Identificou-se relação significativa entre: apoio material e disfunção diurna (p=0,034); apoio afetivo e eficiência do sono (p=0,026); interação social positiva e qualidade subjetiva do sono (p=0,001) e disfunção diurna (p=0,008). Conclusão: Quanto maior a interação social positiva, melhor é a qualidade do sono.

Objective: to analyze the relationship between social support and sleep quality of elderly individuals who care for other elderly individuals in a socially vulnerable environment. Method: a cross-sectional study conducted with 65 caregivers interviewed using a characterization instrument, Katz Index, Lawton and Brody Scale, Pittsburgh Sleep Quality Index, and Medical Outcomes Study Social Support Scale, with data analyzed using comparison and correlation tests. Results: the majority were women, spouses of the elderly being cared for, and had poor sleep quality. A weak and inverse correlation was observed between poor sleep quality and the positive social interaction dimension (Rho=-0.27; p=0.028). Significant relationships were identified between: material support and daytime dysfunction (p=0.034); emotional support and sleep efficiency (p=0.026); positive social interaction and subjective sleep quality (p=0.001), as well as daytime dysfunction (p=0.008). Conclusion: The higher the positive social interaction, the better the sleep quality.

Objetivo: analizar la relación entre el apoyo social y la calidad del sueño de personas mayores que cuidan de otras personas mayores en entornos socialmente vulnerables. Método: estudio transversal realizado con 65 cuidadores entrevistados mediante un instrumento de caracterización, Índice de Katz, Escala de Lawton y Brody, Índice de Calidad del Sueño de Pittsburgh y Escala de Apoyo Social del Medical Outcomes Study, los datos fueron analizados mediante pruebas de comparación y correlación. Resultados: la mayoría eran mujeres, cónyuges del adulto mayor que recibe el cuidado y tenían mala calidad del sueño. Se observó una correlación débil e inversa entre la mala calidad del sueño y la dimensión de interacción social positiva (Rho=-0,27; p=0,028). Se identificó que había relación significativa entre: apoyo material y disfunción diurna (p=0,034); apoyo afectivo y eficiencia del sueño (p=0,026); interacción social positiva y calidad subjetiva del sueño (p=0,001) y disfunción diurna (p=0,008). Conclusión: Cuanto mayor sea la interacción social positiva, mejor será la calidad del sueño.

[Orphanhood due to COVID-19 in Argentina during 2020-2021]. / Orfandad por COVID-19 en la República Argentina durante 2020 y 2021.

INTRODUCTION: The COVID-19 pandemic has had significant impacts on society, particularly on children and adolescents, who have faced serious social, educational, and health consequences due to the loss of their primary caregivers. MATERIALS AND METHODS: Female fertility rates were analyzed, and estimates of male fertility were made to calculate the number of children under 18 years old by age group. Demographic and mortality information from COVID-19 infection was used to calculate the resulting orphanhood in Argentina during the period 2020-2021, considering the loss of one or both parents or the main caregiver grandparent. RESULTS: A total of 25161 Argentine children and adolescents lost one of their primary caregivers due to COVID-19 during the pandemic. Of these, 22729 were orphaned by mother or father during the analyzed period. The majority of cases (79.5%) were related to the father's death. Specific age groups with higher incidence of orphanhood were identified. The loss of caregiver grandparents was also significant, affecting 2432 children and adolescents. DISCUSSION: The findings underscore the need for specific policies and programs to address the comprehensive needs of children and adolescents affected by orphanhood during the pandemic. Potential long-term impacts on the physical, mental, educational, and socioeconomic health of these children and adolescents are highlighted.

Introducción: La pandemia de COVID-19 ha ejercido impactos significativos en la sociedad, particularmente en niños, niñas y adolescentes (NNA), quienes han enfrentado consecuencias sociales, educativas y de salud graves debido a la pérdida de sus cuidadores principales. Materiales y métodos: Se analizaron las tasas de fertilidad femenina y se realizaron estimaciones sobre la fertilidad masculina a fin de calcular los hijos menores de 18 años por grupo de edad. Se utilizó información demográfica y de mortalidad por infección por COVID-19 para calcular la orfandad resultante en Argentina durante el período 2020-2021, considerando la pérdida de uno o ambos progenitores o del cuidador principal abuelo/a. Resultados: Un total de 25161 NNA argentinos perdieron a uno de sus cuidadores principales por el COVID-19 durante la pandemia. De ellos, 22729 NNA quedaron huérfanos de madre o padre durante el periodo analizado. La mayoría de los casos (79.5%) estuvo relacionada con la muerte del padre. Se identificaron grupos de edad específicos con mayor incidencia de orfandad. La pérdida de abuelos cuidadores también fue significativa, afectando a 2432 NNA. Discusión: Los hallazgos subrayan la necesidad de políticas y programas específicos para abordar las necesidades integrales de los NNA afectados por la orfandad durante la pandemia. Se destacan los posibles impactos a largo plazo en la salud física, mental, educativa y socioeconómica de estos niños y adolescentes.

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.

Transcultural Adaptation of the "Caregiver Guilt Questionnaire" (CGQ).

OBJECTIVES: To implement a transcultural adaptation of the Caregiver Guilt Questionnaire (CGQ) for the Brazilian population. METHODS: Five stages were involved in the adaptation: two independent translations by Brazilian nationals fluent in Spanish; summary of translations produced; back-translation; evaluation by expert panel of judges (n = 5); and lastly, assessment by family caregivers (n = 30). RESULTS: semantic changes were made to render the items more relevant to Brazilian culture and replicate the five factors of guilt proposed by the original questionnaire. CONCLUSIONS: A Brazilian version of the questionnaire was produced and transculturally adapted for use in Brazil, allowing future validation and application. CLINICAL IMPLICATIONS: The CGQ allows healthcare professionals to quantify feelings of guilt. Clinicians and clinical researcher can use the scale to obtain more precise interventions.

Sufrimiento psicosocial en trabajadoras migrantes latinoamericanas en tareas de cuidados en España y Alemania, durante la pandemia de COVID-19.

In the context of international migration, many migrant women face an overload of care work for other people, corroborating a lack of adequate care and protection for them, which places them in vulnerable situations and at risk of suffering psychosocial harm. emotional and physical to your health. This is aggravated in the scenario of the COVID-19 pandemic, considering the structural social inequalities that have deepened to unsustainable limits for the subaltern sectors of societies, where Latin American migrant women who work in the field of domestic care of Spain and Germany. In this way, this work seeks to analyze the problem of psychosocial suffering related to care work in migrant Latin American women in Germany and Spain during the COVID-19 pandemic. For this, the integrative review was used as a qualitative synthesis procedure of previous related studies. The importance of this study lies in the fact that there are few studies on the psychosocial health of Latin American migrant women who perform domestic and care work. Some results show that, in this labor niche in Germany and Spain, the identity of women, migrants and Latin Americans, can contribute to unleash psychological and emotional suffering, due to the precarious working conditions to which many submit out of necessity and because of the field. of care to be the first "option", derived mainly from the limited perspectives of labor and social insertion in the country of destination, than from a freely and consciously chosen task.

[Epidemiology of tracheostomized children living at home in Argentina]. / Epidemiología de niños traqueostomizados que viven en sus hogares en Argentina.

INTRODUCTION: Although extensive research exists on the morbidity and mortality associated with tracheostomy in pediatrics, scarse work has been done to analyze the outcomes after hospital discharge of tracheostomized children. In our country there are no publications referring to the follow-up of this population. The general objective of this study was to describe and analyze the situation of tracheostomized children living at home in Argentina. MATERIALS AND METHODS: Descriptive, cross-sectional study through a survey with convenience sampling. Surveys sent between January and July 2023 were collected and analyzed. RESULTS: We obtained 193 surveys during the study period. One hundred eighteen children (61%) underwent tracheostomies before one year of age. The majority (n=183) have a Single Disability Certificate (94.8%). Regarding health coverage, 113 children have social insurance (58.5%), 42 have prepaid coverage (21.8%) and 38 depend on public insurance (19.7%). Almost all of the families (n=184) received some training to care for their children (95.3%). In their homes, 152 families (78.7%) had to resolve some adverse event related to the tracheostomy, and 128 families (66%) had to abandon some paid job. Although 118 children are not in school (61%), 170 (88%) receive rehabilitation therapy. DISCUSSION: Our research, the first of its kind, provides a crucial epidemiologic analysis of the situation of tracheostomized children living at home in Argentina. These findings are significant as they shed light on a previously unexplored area, emphasizing the need for further studies to confirm and expand these data.

Introducción: Si bien existe investigación sobre la morbimortalidad asociada a la traqueostomía en pediatría, pocos trabajos analizan los resultados luego del alta hospitalaria. En nuestro país no existen publicaciones referidas al seguimiento de esta población. El objetivo general de este trabajo fue describir y analizar la situación de niños traqueostomizados que viven en su hogar en Argentina. Materiales y métodos: Estudio descriptivo, transversal a través de una encuesta con muestreo por conveniencia. Se recolectaron y analizaron las encuestas remitidas entre enero y julio de 2023. Resultados: Se obtuvieron 193 encuestas durante el período de estudio. Fueron traqueostomizados antes del año de vida 118 niños (61%). La mayoría (n=183) posee Certificado Único de Discapacidad (94.8%). En relación a la cobertura de salud, 113 niños cuentan con Obra Social (58.5%), 42 con cobertura prepaga (21.8%) y 38 dependen del sector público (19.7%). Casi la totalidad de las familias (n=184) recibió capacitación para el cuidado de su hijo (95.3%). En sus hogares, 152 familias (78.7%) debieron resolver algún evento adverso relacionado con la traqueostomía y 128 familias (66%) abandonaron algún trabajo remunerado. Si bien 118 niños no se encuentran escolarizados (61%), 170 (88%) reciben terapia de rehabilitación. Discusión: Nuestra investigación, la primera de su tipo, proporciona un análisis epidemiológico crucial de la situación de los niños traqueostomizados que viven en sus hogares en Argentina. Hallazgos importantes, ya que arrojan luz sobre un área previamente inexplorada, enfatizando la necesidad de más estudios para confirmar y ampliar estos datos.

Perceptions of Children and Caregivers Regarding Asthma and Its Pharmacotherapy: A Qualitative Study.

Asthma, when untreated, may lead to serious implications, especially in the pediatric population. Understanding the perceptions and needs of children and their caregivers may optimize asthma management. This study was aimed to analyze the perceptions of children and their caregivers regarding asthma and its pharmacotherapy. This is a qualitative study using 2 focus groups. We use the Bardin's content analysis. Three researchers made data cross-validation. As for results, the first focus group comprised 7 children who had uncontrolled asthma. The second group comprised 7 caregivers who were the children's mothers. Four categories emerged: living with asthma, impact of asthma, medications, and health care. Asthma and its pharmacotherapy significantly affect the daily activities of children and mothers. Thus, understand feelings and experiences of patients and caregivers, in addition to educational and welcoming interventions for families in asthma management may be carried out by health care professionals to minimize the damage caused by this disease.

Urban Care for Unpaid Caregivers: Community Voices in the Care Block Program, in Bogotá, Colombia.

The Care Block of Bogotá, Colombia, is an urban program that offers services for low-income unpaid caregivers. This study aimed to (i) characterize unpaid caregivers' subjective well-being, mental health symptoms, physical activity levels, and use of public spaces linked to the Care Block; (ii) identify caregivers' perceived built and social environment facilitators and barriers to accessing the Care Block facility; and (iii) document the community-led advocacy process to improve the Care Block program. The quantitative component included a subjective well-being and mental health symptoms survey, and the System for Observing Play and Recreation in Communities (SOPARC) instrument. The qualitative component included the Our Voice citizen science method augmented with portable virtual reality equipment to engage participants in advocacy for changes. Participants (median age of 53 years) dedicated a median of 13.8 h a day to unpaid caregiving, had an average subjective well-being score of 7.0, and 19.1% and 23.8% reported having depression and generalized anxiety symptoms respectively. Caregivers reported that the program fosters their perception of purpose, enjoyment, resilience, and cognitive and emotional awareness. SOPARC evaluation showed that most women engaged in moderate to vigorous physical activity. The caregivers highlighted education, physical activity services, and integration of facilities as facilitators to accessing the Care Block program. Poor quality and lack of sidewalks and roads, limited personal safety, and the risk of pedestrian-vehicle collisions were identified as barriers. Virtual Reality sparked compelling dialogue between participants and stakeholders, allowing stakeholders to reflect on an urban program facilitating unpaid care work.

Screening for dysphagia in older people with dementia: Evidence of validity based on internal structure and reliability of the Caregiver Questionnaire - RaDID-QC.

OBJECTIVE: To identify internal structure validity evidence of a dysphagia screening questionnaire for caregivers of older adults with Alzheimer's disease dementia and/or vascular dementia. METHODS: The 24-question Dysphagia Screening in Older Adults with Dementia - Caregiver Questionnaire (RaDID-QC) was administered by interviewing 170 caregivers of older people with dementia, selected by convenience at the Outpatient Reference Center for Older People. Exploratory Factor Analysis (EFA) was used to assess the internal structure validity of the questionnaire, and Cronbach's alpha was used to analyze reliability. Questions with factor loadings lower than 0.45 in magnitude were removed from the final questionnaire. Multivariate multiple linear regression was used to assess the percentage of variance explained by the remaining questions. RESULTS: Kayser-Meyer-Olkin (KMO) and Bartlett's tests suggested that the questionnaire was adequate for EFA. Principal Component Analysis (PCA) suggested that 12 components captured at least 75 % of the total variance. The corresponding 12-factor EFA model showed a statistically significant fit, and 15 out of the 24 questions had factor loadings greater than 0.45. Cronbach's alpha was 0.74 for the 15 questions, which explained 71 % of the total variance in the complete dataset. The questionnaire has adequate internal structure validity and good reliability. Based on EFA, RaDID-QC decreased from 24 to 15 questions. Other internal validity and reliability parameters will be obtained by administering the questionnaire to larger target populations. CONCLUSION: The RaDID-QC applied to caregivers of older adults with dementia due to Alzheimer's disease and/or vascular dementia produced valid and reliable responses to screen dysphagia signs and symptoms.

Effectiveness of Internet-Based or Mobile App Interventions for Family Caregivers of Older Adults with Dementia: A Systematic Review.

INTRODUCTION: Global aging presents socioeconomic and health challenges. Dementia, a growing concern, affects millions of older adults, intensifying the burden on family caregivers. E-health interventions offer hope through technological solutions, although current research is limited. This study evaluated the effectiveness of internet-based or mobile app interventions for family caregivers of older adults with dementia. METHODOLOGY: A systematic review with a narrative synthesis was conducted using databases (PubMed, CINAHL, Scopus, LILACS, and PsycInfo) and the bibliographies of retrieved articles, with no restrictions on time or language. RESULTS: The search yielded 2092 results, of which 22 studies met the inclusion criteria, encompassing a total of 2761 family caregivers. Twenty-one different outcomes were evaluated and classified into three main types of interventions: psychoeducational, psychotherapeutic, and multicomponent. CONCLUSIONS: The study highlights the importance of internet-based and mobile app interventions in supporting family caregivers of older adults with dementia. These interventions positively affect many aspects of caregiver well-being, suggesting their utility in addressing this group's emotional, social, and self-care needs.

Adaptation, testing, and use of the "iSupport for Dementia" program in different countries: a systematic review.

The World Health Organization developed the "iSupport for Dementia" program for family caregivers of people with dementia. Objective: To explore studies on adaptation, randomized clinical trial protocols, and preliminary results of iSupport by unpaid caregivers of people living with dementia in different countries. Methods: Systematic review. Results: Ten cultural adaptation studies, eight randomized clinical trial protocols, and two preliminary results were included. Adaptation studies showed adjustments in terminology, design, and additional resources. Clinical trial protocols included burden as the primary outcome, and baseline, three months of intervention, and follow-up after six months. Studies with preliminary results found positive effects on the mental health and well-being of caregivers after using the program. Conclusion: iSupport is an online program of the World Health Organization in response to dementia in implementation in different countries.

A Organização Mundial da Saúde desenvolveu o programa "iSupport for Dementia" para cuidadores familiares de pessoas com demência. Objetivo: Explorar estudos sobre adaptação, protocolos de ensaio clínico randomizado e resultados preliminares do "iSupport" por cuidadores não remunerados de pessoas que vivem com demência em diferentes países. Métodos: Revisão sistemática. Resultados: Foram incluídos dez estudos de adaptação cultural, oito protocolos de Ensaio Clínico Randomizado e dois resultados preliminares. Os estudos de adaptação apresentaram os ajustes nas terminologias, design e recursos adicionais. Os protocolos de ensaio clínico incluíram a sobrecarga como desfecho primário, e com linha de base, três meses de intervenção e acompanhamento após seis meses. Os estudos com resultados preliminares encontraram efeitos positivos na saúde mental e bem-estar dos cuidadores após o uso do programa. Conclusão: O iSupport é um programa online da Organização Mundial da Saúde em resposta à demência na implantação em diferentes países.

Relationship between stress levels and coping techniques in caregivers of children with autism spectrum disorder in Chile, 2021.

Today, talking about autism spectrum disorder (ASD) is the same as talking about cases that occur in one in 160 births worldwide. Some of them will be able to live independently when they grow up while others will have less autonomy and will be more dependent, requiring the support of caregivers throughout their lives. Objective: Understanding the emotional burden that this could generate on parents, we sought to analyze the level of stress and coping techniques in caregivers of children with ASD in Chile, 2021. Methods: Interview with a sample composed of 61 parents or guardians of people with ASD. Results: After data analysis, it was possible to perform a statistically significant correlation (p=0.002) between the level of stress and the coping strategies (problem-solving, self-criticism, emotional expression, wishful thinking, social support, cognitive restructuring, problem avoidance, and social withdrawal). In addition, positive strategies that reduce stress levels in parents or caregivers of children with ASD were identified (problem resolution, cognitive restructuring, social support, and emotional expression). Conclusion: Through this research, it was possible to respond to each of the stated objectives, managing to determine what were the characteristics of caregivers and their main difficulties. It was also observed that the majority lost the possibility of working to dedicate themselves to the care of the diagnosed person.

Hoje, falar sobre transtorno do espectro autista (TEA) é falar sobre casos que ocorrem em um a cada 160 nascimentos em todo o mundo. Alguns deles conseguirão viver de forma independente quando crescerem, e outros terão menos autonomia e serão mais dependentes, necessitando do apoio de cuidadores ao longo da vida. Objetivo: Entendendo o gasto emocional que isso pode gerar nos pais, buscamos analisar o nível de estresse e as técnicas de enfrentamento em cuidadores de crianças com TEA no Chile, 2021. Métodos: Entrevistar uma amostra composta de 61 pais ou responsáveis de pessoas com TEA. Resultados: Isto nos permitiu obter, após a análise dos dados, uma correlação estatisticamente significativa (p=0,002) entre o nível de estresse e as estratégias de coping (resolução de problemas, autocrítica, expressão emocional, wishful thinking, apoio social, reestruturação cognitiva, evitação de problemas e retraimento social). Além disso, foram identificadas estratégias positivas que reduzem os níveis de estresse em pais ou cuidadores de crianças com TEA (resolução de problemas, reestruturação cognitiva, apoio social e expressão emocional). Conclusão: Além disso, esta investigação conseguiu responder a cada um dos objetivos enunciados, conseguindo determinar quais eram as características dos cuidadores e quais as suas principais dificuldades. Observar-se-á também que a maioria perdeu a possibilidade de trabalhar para se dedicar ao cuidado da pessoa diagnosticada.

Quality of Life of the Primary Caregivers of Children with Cleft Lip and Palate in Guanajuato, Mexico: A Cross-Sectional Study.

Comprehensive treatment is crucial for patients with a cleft lip/palate. While studies have investigated its impact on children's quality of life, few have examined the effects on primary caregivers. The aim of the study was to compare the quality of life of caregivers of children with cleft lip/palate to a control group at the National School for Higher Studies, National Autonomous University of Mexico, Guanajuato. A cross-sectional study was conducted at a teaching dental clinic of the National School of Higher Studies, National Autonomous University of Mexico, Guanajuato, México, from May to December 2021 involving 140 caregivers (70 in each group). The WHOQoL Bref instrument assessed the quality of life. In addition to the descriptive analysis, a binary logistic regression analysis was carried out, taking dichotomized reported quality of life as the dependent variable. Among the caregivers, 88.6% were female (p > 0.05), and 45 (64.8%) from the study group reported poor quality of life (p < 0.05). A multivariate analysis indicated that caring for a child with cleft lip/palate raised the likelihood of poor quality of life (p < 0.05). The findings emphasize the need for comprehensive support for both patients and caregivers, as their well-being affects patient outcomes.

What could be Improved at Melanoma Patients' Welfare Death? End of Life Perception of Caregivers.

Despite enormous recent advances in stage IV melanoma treatment, it continues to have a significant mortality. Five-years survival is below 50% even when granted full access to effective therapeutic regimens. Considering the real world, mostly with low or medium-income countries like Brazil, where 75% of population depends on public health system receiving ineffective Dacarbazine chemotherapy, more than 95% of stage IV patients are dead before 5 years. Knowing the survival process of melanoma end-of-life time is imperative to help physicians to establish better symptoms control and improve the quality of death of these patients. METHODS: Relative caregiver of melanoma end of life patients were invited to participate in a specific interview answering questions for the purpose of gathering information regarding symptoms and patients' complaints at the last 30 days, 7 days and at the day of death. RESULTS: Although melanoma has a highest propensity for brain dissemination, seizure and focal neurological deficits were not a major complaint. Most of dying melanoma symptoms are shared among other solid terminality tumor process and get worse from 30 days to 7 days, but the majority of symptoms kept unchanged from 7 days till time to death. Wound bleeding and bad odor were the only complaints that got worse during the whole terminality process and could be improved with better commitment of assistant team. CONCLUSIONS: although a strong effort is made to control brain metastasis, local and regional open wound metastasis represents a major remediable complaint that should receive more attention at end-of-life melanoma patients.

Acquisition of mastery by the caregiver for the continuity of care after hospital discharge.

Caregivers who provide transitional care to people with functional dependence require the mastery of skills that ensure successful continuity of care. This domain of care requires nursing interventions to support the caregiver. This study aims to understand aspects of the development of caregiver mastery for continuity of care after hospital discharge. METHOD: Exploratory, qualitative research carried out in a university hospital in Salvador, Bahia, Brazil, from July to December 2022, with fourteen qualified caregivers participating. Data was organized using the software Web Qualitative Data Analysis, analyzed by thematic content analysis, and discussed in light of the Theory of Transitions proposed by Dr. Afaf Meleis. RESULTS: The caregivers were women who cared for functionally dependent individuals and received training for care during hospitalization and telephone follow-up after discharge. Twelve achieved mastery; those with less experience needed more calls to acquire mastery. CONCLUSIONS: Discharge planning and caregiver education are essential to support them in safe and effective hospital-home transitions.

Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives.

PURPOSE: To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina. METHODS: Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach. RESULTS: The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges. CONCLUSION: The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.

Streamlined pathways for patients with amyotrophic lateral sclerosis in Argentina are necessary to ensure timely access to comprehensive support and interventions, laying the foundation for holistic rehabilitation.There is a need to encourage clear communication between healthcare providers and patients to establish ongoing dialogue incorporating emotional, social, and psychological aspects into rehabilitation, aligning with patient-centric approaches.There is a need to develop and implement adaptive rehabilitation strategies to sustain independence and enhance quality of life for amyotrophic lateral sclerosis patients, addressing the physical, emotional, and social implications of the disease's progression.Rehabilitation professionals should advocate for systemic improvements to ensure equitable access to therapies and support alleviate financial burdens, enabling a comprehensive, patient-focused approach to rehabilitation.

Dysphagia Screening in Brazilian Older Adults with Dementia: Content Development and Validation of a Questionnaire for Caregivers - RaDID-QC.

This study aims to develop and validate the content and response processes of a questionnaire intended for caregivers to screen for dysphagia in Brazilian older adults with dementia due to Alzheimer's disease and/or vascular dementia. The instrument items were developed in Brazilian Portuguese language based on the theoretical framework. A committee of speech-language-hearing therapists analyzed the relevance, objectivity, clarity, and understandability of the items with the Delphi method. The content validity index cutoff agreement score for experts' answers to validate each item in the questionnaire was 0.78; in the intraclass correlation coefficient, it was 0.75 for all items. For response process validity evidence, the questionnaire was applied to 30 caregivers of older adults with dementia, who judged the clarity and understandability of the items. Each item was validated when understood by at least 95% of participants. The first version of the instrument had 29 items. After two expert assessments, the last version had 24 items. The intraclass correlation coefficient was 0.85. Only one item needed semantic adjustments in the pre-test. The dysphagia screening instrument applied to caregivers of older adults with dementia was developed with adequate content and response process validity evidence, enabling adjustments in its construct. Future studies will analyze the remaining evidence of validity and reliability.

Outcomes Among Mexican American and Non-Hispanic White Informal Stroke Caregivers.

BACKGROUND: Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. METHODS: Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. RESULTS: Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (ß, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (ß, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (ß, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (ß, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. CONCLUSIONS: Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.

Preparing for Cancer: A Qualitative Study of Hispanic Patient and Caregiver Needs.

BACKGROUND: Cancer disproportionately affects Hispanic populations, yet the preparedness of Hispanic caregiver-patient dyads facing cancer remains understudied. This study aims to identify essential components of preparedness needs and inform future psychosocial interventions for this demographic. METHODS: Secondary analyses were conducted utilizing focus groups to develop a communication intervention for Hispanic patients and caregivers. Transcripts were qualitatively analyzed using NVivo v12 (2020). RESULTS: Analysis revealed symptom management and treatment comprehension as pivotal aspects of preparation. Additionally, preparedness among our sample emerged by addressing the multifaceted dimensions of preparedness, including psychological, emotional, educational, familial, practical, financial, and spiritual aspects. CONCLUSIONS: Tailoring interventions encompassing diverse dimensions of preparedness can foster inclusivity and maximize their impact on supportive measures. This underscores the necessity for culturally sensitive approaches when delivering interventions supporting Hispanic individuals navigating the challenges of cancer.