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.

Professional experience and case management as predictors of nursing good practices directed to the primary caregiver.

AIMS: Identify nursing good practices related to caregivers in three basic health areas of the Valencian Community and analyze the impact of professional experience and the presence of a Nurse Case Manager on nursing good practices. METHOD: Cross-sectional descriptive study. An anonymous, self-administered "ad hoc" questionnaire was used with 10 items: 8 individual and 2 institutional good practices. The independent variables were: work experience and the presence of a Nurse Case Manager. An analytical study was carried out using Chi square, Fisher and Mann-Whitney U tests, assuming p < 0.05 as a significant value. RESULTS: 60 participants: 50 women, median age of 36 years and median experience of 4 years. 45 with experience ≥ 2 years and 23 worked in an environment with Nurse Case Manager. The record of the caregiver was the only individual good practice carried out by more than 56% of the population, with the rest implemented by less than 20%. Pre- or post-pandemic experience did not show significant differences, the presence of Nurse Case Manager only showed differences in knowledge of training workshops and individual good practices were greater among professionals with more experience. CONCLUSIONS: Individual good practices in caring for caregivers have low implementation, with better practices observed among professionals with more experience.

Descripción de necesidades sobre capacitación en una población de cuidadores de pacientes con dependencia severa en el contexto del CESFAM Madre Teresa de Calcuta

Introducción: el envejecimiento poblacional, junto al aumento de enfermedades crónicas no transmisibles han llevado a un incremento en la prevalencia de las personas en situación de dependencia severa, requiriendo que familiares, amigos o vecinos asuman roles de cuidadores. Este estudio se enfoca en identificar a la población de cuidadores de personas con dependencia severa y facilitar su adherencia en programas de capacitación para en un Centro de Salud Familiar (CESFAM) en Puente Alto, Santiago de Chile. Métodos: se detectaron 82 cuidadores de pacientes con dependencia severa, de los cuales 47 seguían siendo cuidadores activos. Se encuestó telefónicamente a 35 cuidadores de pacientes con dependencia severa. Se recopiló información sobre acceso a internet, tiempo disponible y conocimiento sobre la disponibilidad de capacitaciones. Además, se evaluó el nivel de sobrecarga en los cuidadores utilizando la escala de Zarit abreviada (EZA). Resultados: el 83% de los cuidadores encuestados tenía acceso a internet, aunque se identificaron barreras como la falta de tiempo y conocimiento sobre las capacitaciones disponibles. Se encontró que el 62,8% de los cuidadores experimentaba sobrecarga severa. Estos resultados sugieren la falta de mecanismos para el cuidado de pacientes dependientes y la necesidad de facilitar la participación en programas de capacitación. Conclusiones: el estudio ofrece una breve representación sobre los cuidadores de personas con dependencia severa en un contexto de atención primaria. Se concluye que se requieren intervenciones multidisciplinarias para acercar instancias de capacitación y optimizar el cuidado del cuidador. Como parte de estas intervenciones, se desarrolló un manual del cuidador que servirá como recurso para el equipo de salud del CESFAM Madre Teresa de Calcuta, con el fin de brindar apoyo efectivo a los cuidadores.

Introduction: Population aging and the increase in non-communicable chronic diseases have led to a rise in severe dependency, requiring that family members, friends, or neighbors take on caregiving roles. This study focuses on improving participation in training programs for caregivers of individuals with severe dependency at a Family Health Center (CESFAM) in Puente Alto, Santiago, Chile. Methods: To characterize this population and determine barriers to accessing distance training, 35 caregivers of patients with severe dependency were contacted by phone. All the information was gathered on internet access, available time, and awareness of training availability. Additionally, caregiver burden levels were evaluated using de abbreviated Zarit scale (EZA). Results: 83% of surveyed caregivers had internet access, although barriers such as lack of time and knowledge about available training were identified, and 62.8% of caregivers experienced severe burdens. These results highlight the need for interventions to facilitate participation in training programs and improve the care provided by caregivers. Conclusions: The study provides a specific insight into caregivers of individuals with severe dependency in a primary care context. Multidisciplinary interventions are required to bring training opportunities closer and optimize caregiver support. As part of these interventions, a caregiver manual was created to serve as a resource for the CESFAM Madre Teresa de Calcuta health team, aiming to provide adequate support to caregivers.

Eficacia de un programa de salud bucal para cuidadores de personas con discapacidad / Effectiveness of an oral health program for caregivers of people with disabilities

Objetivo. Evaluar la eficacia del programa de salud bucal para los cuidadores de las personas con discapacidad. Métodos: Estudio cuasi experimental de intervención directa, longitudinal, con control antes y después, con un muestreo no probabilístico. Se diseñó, aplicó y evaluó un programa educativo de salud bucal a los cuidadores de personas con discapacidad, mediante una encuesta diseñada al efecto, antes y después de su implementación, en 111 cuidadores, así como la evaluación del Índice de Higiene Bucal de sus familiares con discapacidad, en el periodo de octubre a diciembre de 2020. La información fue procesada utilizando las herramientas de Excel y el programa SPSS versión 25. Los datos numéricos fueron resumidos en tablas descriptivas y los datos categóricos en tablas de frecuencia. Resultados: Antes de la intervención 9,9 % de las personas con discapacidad asistían cada seis meses al dentista, lo cual se incrementó a 76,5 %. Antes del programa 102 personas solo usaban cepillos y pasta dentales para la limpieza bucal, después 109 continuaron usando los mismos productos, sin embargo, se incrementó en un 6 % el uso del hilo dental. El Índice de Higiene bucal se mantuvo como regular, aunque disminuyó de 2.30 a 1.68. Conclusiones: La aplicación del programa cambió positivamente la situación de la salud bucal de los discapacitados ya que los cuidadores demostraron la adquisición de los nuevos conocimientos para una adecuada higiene de la cavidad bucal, la constancia en la aplicación del proceso y la necesidad de asistir a la atención odontológica por hábito y no por necesidad puntual.

Objective: Determine the level of knowledge of caregivers of people with disabilities about oral health before and after applying a program of educational workshops on the subject. Methods: It was a quasi-experimental study of direct intervention, longitudinal, with control before and after, with non-probabilistic sampling. An educational oral health program for caregivers of people with disabilities was developed, applied, and evaluated through a survey before and after its implementation, in 111 caregivers, as well as the evaluation of the Oral Hygiene Index of their relatives with disabilities, in the period from October to December 2020. Results: Before the intervention, 9.9% of people with disabilities attended the dentist every six months, which increased to 76.5%. Before the program, 102 people only used toothbrushes and toothpaste for oral cleaning, after 109 continued using the same products, however, the use of dental floss increased by 7 people. The Oral Hygiene Index remained regular, although it decreased from 2.30 to 1.68. Conclusion: The application of the oral health program had a favorable impact on caregivers, improving the knowledge regarding oral hygiene of their relatives with disabilities, improving the Oral Hygiene Index.

(Re)construção de identidade do ethos masculino e masculinidades na atenção domiciliar em saúde do homem / Identity (re)construction of the male ethos and masculinities in men's health home care / (Re)construcción de la identidad del ethos masculino y de las masculinidades en el cuidado domiciliario en salud del hombre

RESUMOObjetivo: compreender as masculinidades de homens em cuidados domiciliares a partir da construção do ethos masculino. Método: pesquisa qualitativa tendo o referencial teórico-metodológico de Norman Fairclough para análise crítica de discurso e a concepção teórica de masculinidades segundo Raewyn Connell. Entrevistou-se 58 usuários entre pacientes e cuidadores de um serviço público de atenção domiciliar. Resultados: identificou-se duas centralidades discursivas: masculinidade hegemônica e suas ideologias e o novo ethos masculino: a admissão da dependência. Percebeu-se a presença de uma masculinidade não hegemônica entre os homens em cuidados domiciliares, cujas circunstâncias específicas do domicílio favorecem mudanças histórico-sociais e culturais, fazendo emergir novos conceitos, sentidos e experiências. Conclusão: o ethos masculino dos homens cuidados no domicílio é marcado pela condição de diferenciação, alinha-se a uma masculinidade subordinada, embora se referenciem em ideologias dominantes. Esse novo ethos masculino permite, em outras análises, reconhecer as necessidades e o comportamento de homens em atenção domiciliar.

ABSTRACTObjective: to understand the masculinities of men in home care based on male ethosconstruction. Method: qualitative research aligned with Raewyn Connell's conception of masculinities and critical discourse analysis based on Norman Fairclough's theoretical-methodological framework. A total of 58 users were interviewed between patients and caregivers of a home care public service. Results: two discursive centralities were identified: hegemonic masculinity and its ideologies; and the new male ethos: the admission of dependency. The presence of a non-hegemonic masculinity is perceived among the men in home care, whose particular home experiences favor historical, social, and cultural changes, giving rise to new concepts, meanings, and experiences. Conclusion: the masculine ethosof men cared for at home is marked by the condition of differentiation, it is aligned with a subordinate masculinity, although it is based on dominant ideologies. This new masculine ethos allows, in other analyses, to recognize the needs and the behavior of men in home care.

RESUMENObjetivo: comprender las masculinidades de los hombres en la atención a domicilio a partir de la construcción del ethos masculino. Método: investigación cualitativa basada en el marco teórico-metodológico de Norman Fairclough para realizar el análisis del discurso y en el concepto de masculinidades de Raewyn Connell. Se realizaron entrevistas a 58 usuarios entre pacientes y cuidadores de un servicio público de atención domiciliaria. Resultados: se identificaron dos centralidades discursivas: la masculinidad hegemónica y sus ideologías; y el Nuevo ethos masculino: la admisión de la dependencia. Se constató que hay una masculinidad no hegemónica entre hombres en atención domiciliaria cuyas circunstancias específicas del hogar proporcionan cambios históricos, sociales y culturales, lo que permite surgir nuevos conceptos, significados y vivencias. Conclusión: el ethos masculino de los hombres en atención a domicilio está marcado por la condición de diferenciación y se alinea con una masculinidad subordinada, aunque se asiente en ideologías dominantes. Este nuevo ethos masculino permite reconocer, en análisis futuras, las necesidades y el comportamiento de los hombres en atención a domicilio

Práticas de cuidado e necessidades de saúde de homens em atenção domiciliar / Care practices and health needs of men in home care / Prácticas de cuidado y necesidades de salud de los hombres en el cuidado domiciliario

Objetivo: Analisar as práticas de cuidado desenvolvidas para atender às necessidades de saúde de homens em atenção domiciliar. Métodos: Pesquisa observacional e qualitativa, realizada com 34 cuidadores e 24 homens assistidos pelo serviço de atenção domiciliar do município de João Pessoa. A coleta de dados foi realizada por meio de um roteiro com variáveis sociodemográficas e perguntas abertas. A Análise Crítica do Discurso foi utilizada como método de análise, com destaque para os significados representacional e identificacional dos discursos. Resultados: As práticas de cuidado e necessidades de saúde foram apontadas com base na relação hegemônica entre os atores do cuidado, associação do cuidado ao processo de trabalho informal, atuação da família, da atividade corresponsabilizada, e prática da autonomia e autocuidado. Conclusão: Evidenciou-se um cuidado multifacetado e executado por diversos atores com suporte de equipes multiprofissionais de atenção domiciliar. (AU)

Objective: To analyze the care practices developed to meet the health needs of men in home care. Methods: Observational and qualitative research, carried out with 34 caregivers and 24 men assisted by the home care service in the city of João Pessoa. Data collection was performed through a script with sociodemographic variables and open questions. Critical Discourse Analysis was used as a method of analysis, with emphasis on the representational and identificational meanings of the discourses. The research was approved according to the opinion number 1.829.326. Results: Care practices and health needs were identified based on the hegemonic relationship between the care actors, association of care with the informal work process, family activities and co-responsibility activities, and the practice of autonomy and self-care. Conclusion: There was evidence of a multifaceted care performed by different subjects with the support of multidisciplinary home care teams. (AU)

Objetivo: Analizar las prácticas asistenciales desarrolladas para satisfacer las necesidades de salud de los hombres en la atención domiciliaria. Métodos: Investigación observacional y cualitativa, realizada con 34 cuidadores y 24 hombres asistidos por el servicio de atención domiciliaria en la ciudad de João Pessoa. La recolección de datos se realizó mediante un guión con variables sociodemográficas y preguntas abiertas. Se utilizó el Análisis Crítico del Discurso como método de análisis, con énfasis en los significados representativos e identificativos de los discursos. La investigación fue aprobada de acuerdo al dictamen número 1.829.326. Resultados: Se identificaron prácticas de cuidado y necesidades de salud a partir de la relación hegemónica entre los actores del cuidado, la asociación del cuidado con el proceso de trabajo informal, las actividades familiares y de corresponsabilidad, y la práctica de la autonomía y el autocuidado. Conclusión: Se evidenció una atención multifacética realizada por diferentes sujetos con el apoyo de equipos multidisciplinares de atención domiciliaria. (AU)

Analysis of primary caregivers' knowledge concerning the cariogenic risk associated with the use of pediatric liquid medications / Análisis del conocimiento de los cuidadores principales sobre el riesgo cariogénico implicado en la ingesta de medicamentos líquidos pediátricos

Introduction: Pediatric liquid medications (PLM) are frequently administered to children, yet their usage may contribute to the onset of dental caries. Despite its prevalence, there is a notable scarcity of scientific research regarding caregivers' knowledge of this potential cariogenic risk. Objective: This study aims to assess the knowledge of the main caregivers of children aged 5 to 12 years concerning the cariogenic potential associated with the use of PLM. Materials and Methods: A cross-sectional analytical obser-vational study involving 152 primary caregivers of children aged 5 to 12 was conducted. Data were collected on caregivers' perceptions of the cariogenic risk associated with PLMs and their consumption habits. The study also assessed oral hygiene routines and evaluated the level of information provided by healthcare professionals. Results: Research findings indicated a significant lack of awa-reness among primary caregivers regarding the cariogenic risks of PLMs, with 78.95% being unaware of these risks and 47.37% unaware of the sugars present in such medications. Additionally, a high rate of PLM consumption was observed, with 63% of caregivers using them in the last year. The study underscored a notable absence of guidance from healthcare professionals, as 91.45% of the caregivers stated that they had not received instructions on tooth brushing after the administration of the PLM. Conclusions: The study highlights a significant lack of awa-reness among primary caregivers regarding the cariogenic risks associated with the ingestion of pediatric liquid medications. This deficit in information and preventive measures presents a substantial obstacle to children's oral health. To address this issue, it is crucial for healthcare professionals to offer comprehensive guidance and promote preventive measures.

Introducción: La administración de medicamentos líquidos pediátricos (MLP) es una práctica común en la población infantil y puede estar vinculada al desarrollo de lesiones de caries dental. Sin embargo, la evidencia científica que aborda el conocimiento de los cuidadores acerca de este riesgo cariogénico es escasa. Objetivo: Este estudio busca determinar el conocimiento de los cuidadores principales de niños de 5 a 12 años sobre el potencial cariogénico asociado al consumo de MLP. Materiales y Métodos: Se llevó a cabo un estudio observacional analítico transversal que incluyó a 152 cuidadores principales de niños en el rango de edad de 5 a 12 años. Se recopiló información sobre la percepción de los cuidadores acerca del riesgo cariogénico de los MLP, así como sobre sus patrones de consumo. Además, se registraron las prácticas de higiene oral y se evaluó el nivel de información proporcionado por los profesionales de la salud. Resultado: Los hallazgos de la investigación revelaron que un 78,95% de los cuidadores principales desconocen el riesgo cariogénico asociado al consumo de medicamentos líquidos pediátricos (MLP), y un 47,37% de ellos no eran conscientes de la presencia de azúcares en dichos medicamentos. Además, se observó un elevado índice de consumo de MLP, con un 63% de los cuidadores que los utilizaron en el último año. Se destacó la falta de orientaciones por parte de los profesionales de la salud, ya que, un 91,45% de los tutores afirmaron no haber recibido instrucciones sobre el cepillado dental posterior a la administración de los MLP. Conclusión: Este estudio evidencia un relevante porcentaje de desconocimiento entre los cuidadores principales acerca del riesgo cariogénico asociado a la ingesta de medicamentos líquidos pediátricos. La falta de información y medidas preventivas constituye un desafío significativo para la salud oral de los niños. Es imperativo que los profesionales de la salud proporcionen información detallada y fomenten prácticas de prevención.

The mental health and traumatic experiences of mothers of children with 22q11DS.

Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study's primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.

Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.

Revisión Sistemática Sobre el Funcionamiento Familiar en Familias con un Hijo con una Enfermedad Poco Frecuente / Systematic Review on Family Functioning in Families of Children With Rare Diseases

El presente estudio es una revisión sistemática de las investigaciones realizadas sobre el funcionamiento familiar en familias con niños con una enfermedad poco frecuente. La búsqueda se realizó en las bases de datos Pubmed, EBSCO y Google Académico, siguiendo los lineamientos PRISMA. Luego de aplicar los criterios de inclusión y exclusión a los artículos 460 encontrados inicialmente, un total de 55 artículos conformaron la muestra final. A partir del análisis de los resultados se establecieron las siguientes temáticas abordadas en relación al funcionameinto familiar: impacto del diagnóstico; función y responsabilidades del cuidador; funcionamiento familiar; impacto en la esfera emocional; efectos en la vida conyugal y social; estrategias de afrontamiento; familia, cuidados y sistema de salud. Los hallazgos de este estudio pueden proporcionar una justificación para considerar los factores asociados al funcionamiento familiar al momento de dar el diagnóstico de una EPOF y pensar un tratamiento.(AU)

The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 55 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.(AU)