Spanish adolescent patients with cancer and main caregivers: Using perceptions of care to drive change in healthcare.

PURPOSE: To determine whether there are differences in care experience of adolescent cancer patients and their main caregiver, treated in Adolescent Cancer Units (ACUs), compared to those treated in Non-Adolescent Cancer Units (NACUs), including the COVID-19 pandemic period. METHOD: Measurement of Reported Experience in adolescent oncology patients (12-19 years old) and caregivers through ad hoc surveys. The responses of the study group of patients and caregivers treated in Adolescent Units were compared with the group not treated in them. RESULTS: It is noted that many respondents consider that they have not been affected by the COVID-19 pandemic. Significant differences were seen in communication, with better perception by the group of patients treated in ACU (87.1%) and caregivers of ACU (97.3%) compared to patients and caregivers of NACU (53.3% and 68.2% respectively). Regarding information received about the side effects, a better perception was observed among patients treated in the ACU than in the NACU (p=0.247). In the transmission of information and the possibility of fertility preservation, a significant difference was observed in favour of ACU in patients and direct caregivers (p=0.010 and p=0.018). CONCLUSIONS: ACU represents an improvement in the quality perceived by patients and main caregiver on key points in the comprehensive care of the adolescent with cancer such as information, participation in the process and decision making, approach to side effects, psychological care and help in returning to normal life. However, fertility and strategies for talking about the cancer experience, were identified as areas for future improvement.

Intervenciones para adultos con dependencia funcional y sus cuidadores durante la pandemia de COVID-19 / Interventions for functionally dependent adults and their caregivers during the COVID-19 pandemic

La pandemia de COVID-19 ha afectado a la población, perjudicando especialmente a los miembros de aquellos grupos sociales en situación de mayor vulnerabilidad. Estas poblaciones específicas, como aquellas con alguna dependencia funcional, podrían verse más afectadas por los efectos de la pandemia del COVID-19. Por lo tanto, el objetivo de este artículo fue describir las intervenciones para preservar la salud general, mantener la función y la independencia y prevenir la infección por COVID-19 para los adultos con dependencia funcional (ADF). Se realizó una búsqueda sistemática en bases de datos. Se revisaron los títulos y los resúmenes de cada publicación para determinar su relevancia. Dos revisores independientes accedieron a los artículos de texto completo para determinar su elegibilidad después de la selección inicial. Las búsquedas se realizaron en septiembre de 2021 y se actualizaron en enero y julio de 2022. La información encontrada se clasificó en 3 categorías: 1) ADF durante la pandemia de COVID-19; 2) ADF durante la pandemia de COVID-19 según una condición específica (condiciones neurológicas, discapacidades/deficiencias sensoriales y deterioro cognitivo), y 3) Adultos mayores con dependencia funcional. Los adultos con dependencia enfrentaron dificultades y barreras durante la pandemia por COVID-19. Las autoridades de cada país deben garantizar que los ADF tengan acceso a los servicios de rehabilitación en tiempos de crisis sanitaria. Además, es necesario aumentar la capacidad de los servicios de rehabilitación en tiempos de crisis como pandemias. De igual manera, se sugiere el fortalecimiento de estrategias como la telerehabilitación para evitar el deterioro o agravamiento de la funcionalidad de las personas dependientes. (AU)

The COVID-19 pandemic has affected the world population, especially people from social groups in a situation of greater vulnerability among people with some functional dependency. Therefore, the aim of this review was to describe interventions during the pandemic to preserve general health, maintain function and independence, and prevent COVID-19 infection for functionally dependent adults (FDA). A systematic search in databases was carried out. Titles and abstracts of each publication were reviewed for relevance. Full-text articles were accessed by two independent reviewers. The information found was classified into three categories: 1) FDA during the COVID-19 pandemic, 2) FDA during the COVID-19 pandemic according to a specific condition (neurological conditions, sensory disabilities/impairments, and cognitive impairment), and 3) Older adults with functional dependence. The FDAs have faced difficulties and barriers during the COVID-19 pandemic. Strengthening strategies such as telerehabilitation is suggested to avoid deterioration or aggravation of the functionality of dependent people. (AU)

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.

Postintensive care syndrome in patients and family members. Analysis of COVID-19 and non-COVID-19 cohorts, with face-to-face follow-up at three months and one year.

OBJECTIVE: Compare prevalence and profile of post-intensive care patient (P-PICS) and family/caregiver (F-PICS) syndrome in two cohorts (COVID and non-COVID) and analyse risk factors for P-PICS. DESIGN: Prospective, observational cohort (March 2018-2023), follow-up at three months and one year. SETTING: 14-bed polyvalent Intensive Care Unit (ICU), Level II Hospital. PATIENTS OR PARTICIPANTS: 265 patients and 209 relatives. Inclusion criteria patients: age > 18 years, mechanical ventilation > 48 h, ICU stay > 5 days, delirium, septic shock, acute respiratory distress syndrome, cardiac arrest. Inclusion criteria family: those who attended. INTERVENTIONS: Follow-up 3 months and 1 year after hospital discharge. MAIN VARIABLES OF INTEREST: Patients: sociodemographic, clinical, evolutive, physical, psychological and cognitive alterations, dependency degree and quality of life. Main caregivers: mental state and physical overload. RESULTS: 64.9% PICS-P, no differences between groups. COVID patients more physical alterations than non-COVID (P = .028). These more functional deterioration (P = .005), poorer quality of life (P = .003), higher nutritional alterations (P = .004) and cognitive deterioration (P < .001). 19.1% PICS-F, more frequent in relatives of non-COVID patients (17.6% vs. 5.5%; P = .013). Independent predictors of PICS-P: first years of the study (OR: 0.484), higher comorbidity (OR: 1.158), delirium (OR: 2.935), several reasons for being included (OR: 3.171) and midazolam (OR: 4.265). CONCLUSIONS: Prevalence PICS-P and PICS-F between both cohorts was similar. Main factors associated with the development of SPCI-P were: higher comorbidity, delirium, midazolan, inclusion for more than one reason and during the first years.

A perceção do cuidador informal sobre a hospitalização de familiares com cancro / La percepción del cuidador informal sobre la hospitalización de familiares con cáncer / The informal caregiver´s perception of the hospitalization of familymembers with câncer

Introducción: Los pacientes oncológicos con necesidadde cuidados paliativos continúan internados en serviciosquirúrgicos, donde las enfermeras están preparadas paracuidar al paciente quirúrgico y no para atender sus necesidadespaliativas y las de su familia. Surge la necesidad de cambio,en el cual la familia debe involucrarse en el cuidado.Objetivos: Comprender la percepción de los cuidadoresfamiliares sobre las intervenciones de enfermería en elcuidado de pacientes oncológicos con necesidades de cuidadospaliativos; describir las percepciones de los familiares sobreel apoyo y la disponibilidad de los enfermeros.Metodología: Estudio cualitativo, mediante entrevistasemiestructurada, aplicada a 10 familiares de pacientesoncológicos con necesidad de cuidados paliativos, internadosen un servicio de cirugía, cuyos resultados fueron analizadosmediante análisis de contenido.Resultados: Los familiares entrevistados consideran que ladinámica hospitalaria está centrada en la curación y que nofueron atendidos por las enfermeras, por lo que no hay interésen su proceso vivencial y vivencial. Conclusión: Identificamosfactores facilitadores y obstaculizadores percibidos por losfamiliares cuando su pariente fue hospitalizado. Creemosque los resultados de este estudio indican que es necesarioun cambio en la práctica de enfermería, tanto en la relaciónde ayuda como en el propio cuidado de enfermería, siempreteniendo en cuenta que también se debe cuidar a la familia.(AU)

Introduction: Cancer patients in need of palliative care continueto be admitted to surgical services, where nursesare prepared to take care of the surgical patient andnot to meet their palliative needs and those of theirfamily. Thus, the need for change emerges, in whichthe family should be involved in the care and also beconsidered as a care-receiving unit. Therefore, it ispertinent for nurses to focus their care on the patient-family dyad in a structured and oriented manner forfamily-oriented problem-solving.Objectives: To understand the perception of familycaregivers about nurses' interventions in caring forcancer patients with palliative care needs; describefamily members 'perceptions of nurses' support andavailability.Method: A qualitative study using a semi-structuredinterview with ten relatives of cancer patients in needof palliative care admitted to a surgical service. Theresults were analyzed through content analysis.Results: Participants considered that the hospitaldynamics are centered on healing and that they werenot cared for by nurses, thus not having interest in theirexperiential and existential process. Conclusion: Weidentified facilitating and hindering factors perceivedby the family when a sick member was hospitalized We believe that the results of this study indicate that achange in nursing practice is necessary, both in terms ofhelping relationships and in nursing care itself, alwaysbearing in mind that the family must also be cared for.(AU)

Introdução: Os doentes oncológicos com necessidadede cuidados paliativos continuam a ser internadosem serviços cirúrgicos, onde os enfermeiros estãopreparados para cuidar do doente cirúrgico e nãopara atender as suas necessidades paliativas e as dasua família. Emerge a necessidade de mudança, emque a família deve ser envolvida nos cuidados.Objetivos: Compreender a perceção dos cuidadoresfamiliares sobre as intervenções do enfermeiro nocuidar do doente oncológico com necessidadesde cuidados paliativos; descrever as perceções dosfamiliares relativamente ao apoio e à disponibilidadedos enfermeiros.Metodologia: Estudo qualitativo, com recurso a umaentrevista semiestruturada, aplicada a 10 familiaresde doentes oncológicos com necessidade de cuidadospaliativos, internados num serviço cirúrgico, cujosresultados foram analisados através da análise de conteúdo.Resultados: Os familiares entrevistados consideramque a dinâmica hospitalar é centrada no curar e que nãoforam cuidados pelos enfermeiros, não existindo, assim,interesse pelo seu processo experiencial e vivencial.Conclusão: Identificámos fatores facilitadores edificultadores percecionados pelos familiares aquandodo internamento do seu familiar. Pensamos queos resultados deste estudo indicam ser necessáriauma mudança na prática de enfermagem, quer emtermos de relação de ajuda, quer no próprio cuidarem enfermagem, tendo sempre presente que a famíliatambém deve ser cuidada.(AU)

Sobrecarga, afrontamiento y soporte social en progenitores de niños con cáncer / Caregiver burden, coping and social support in parents of children with cancer

Objetivo: Analizar la relación entre las estrategias de afrontamiento, el soporte social, las características de padres cuidadores migrantes y sus niños con cáncer en la sobrecarga del cuidador de dichos padres. Método: Participaron 82 cuidadores (67 madres y 15 padres) en condición de bajo recursos que residían en albergues para niños con cáncer y sus cuidadores, quienes migraron a la ciudad para recibir el tratamiento. Se utilizó la Escala de Sobrecarga de Zarit (Zarit et al., 1980), el Inventario de Afrontamiento COPE (Carver et al., 1989) y el Cuestionario MOS de apoyo social (Sherbourne y Stewart, 1991). Resultado: Se realizaron dos modelos de regresión para evaluar el impacto de las variables demográficas y psicológicas en la carga del cuidador, el primer modelo involucra la escala global de apoyo social (R2 ajustado=,43, F=9,73, p<,001) y el segundo las escalas específicas (R2 ajustado=,45, F=8,23, p<,001). Los resultados evidencian el rol predictivo de las estrategias de afrontamiento como la aceptación, la reinterpretación positiva y enfocar y liberar emociones; el soporte social global y de tipo afectivo; y características sociodemográficas como el nivel de instrucción del progenitor y la edad del hijo en la sobrecarga del cuidador. La mayoría de estas variables tienen una relación inversa con la sobrecarga. Conclusiones: Los resultados del estudio subrayan la importancia de investigar la sobrecarga del cuidador en situación de vulnerabilidad. Además, el estudio destaca la relevancia de factores como las estrategias de afrontamiento y el apoyo social, que desempeñan un papel clave en la sobrecarga del cuidador.(AU)

Aim: To analyze the relationship between coping strategies, social support, characteristics of migrant parent caregivers and their children with cancer on caregiver overload of such parents. Zarit Burden Interview (Zarit et al., 1980), the COPE Inventory (Carver et al., 1989) and the MOS Social Support Questionnaire (Sherbourne y Stewart, 1991) were used. Method: Eighty-two caregivers (67 mothers and 15 fathers) residing in shelters for children with cancer and their caregivers, who migrated to the city to receive treatment, participated in this study. Results: Two regression models were performed to evaluate the impact of demographic and psychological variables on caregiver burden, the first model involves the global social support scale (R2 adjusted=.43, F=9.73, p<.001) and the second the specific scales (R2 adjusted=.45, F=8.23, p<.001). Results: There is evidence the predictive role of coping strategies such as acceptance, positive reinterpretation and growth, focus and venting of emotions; global and affective social support; and sociodemographic characteristics such as parental level of education and child age in caregiver burden. Most of these variables have an inverse relationship with caregiver burden. Conclusions: The results of the study underline the crucial importance of investigating caregiver burden in the context of vulnerability. In addition, the study highlights the importance of factors such as coping strategies and social support, which play a key role in influencing caregiver burden.(AU)

A comparative study among adolescents with cystic fibrosis and primary ciliary dyskinesia and their caregivers: psychological aspects / Estudio comparativo entre adolescentes con fibrosis quística y discinesia ciliar primaria y sus cuidadores: aspectos psicológicos

This work aimed to conduct a comparative study between cystic fibrosis and primary ciliary dyskinesia among adolescents and their caregivers to understand their emotional adaptation to the disease. Thirty-nine dyads of adolescents aged 9-18 years and their primary caregivers were assessed, 69.20 % of whom had a diagnosis of cystic fibrosis. For the adolescents, anxious-depressive symptomatology was assessed using the HADS, perceived threat of disease (B-IPQ) and quality of life (CRQ-SAS). For the caregivers, emotional symptomatology (HADS) and perceived stress levels (PIP) were assessed. Mean comparisons were made according to diagnosis and severity of anxious-depressive symptomatology, relationships between variables were studied, and qualitative comparative analysis models, QCA, were performed. Higher levels of anxiety and depression were found in the caregiver than in the adolescent. Adolescents with primary ciliary dyskinesia have a more significant emotional impact than adolescents with cystic fibrosis. However, no differences were found in caregivers according to diagnosis. The adolescent's emotional state, quality of life and perceived threat of disease were related to and explained by the caregiver's emotional state, and vice versa. Therefore, there appears to be a certain degree of emotional contagion between the dyad members. This is a preliminary study that has not been carried out before and can help to understand the psychological aspects associated with these diseases to favour the patient's adjustment and thereby ensure more effective management of the disease and adherence to treatment. (AU)

El objetivo fue realizar un estudio comparativo entre la fibrosis quística y la discinesia ciliar primaria entre adolescentes y sus cuidadores para comprender su adaptación a la enfermedad. Evaluando 39 díadas de adolescentes de entre 9 y 18 años y sus cuidadores, el 69,20% de los cuales tenían un diagnóstico de fibrosis quística. Para los adolescentes, se evaluó la sintomatología ansioso-depresiva mediante el HADS, la amenaza percibida de la enfermedad (B-IPQ) y la calidad de vida (CRQ-SAS). Para los cuidadores, se evaluó la sintomatología emocional (HADS) y los niveles de estrés percibido (PIP). Se realizaron comparaciones de medias según el diagnóstico y la sintomatología ansioso-depresiva, se estudiaron las relaciones entre variables y se realizaron modelos de análisis cualitativo comparativo. Se encontraron mayores niveles ansioso-depresivos en el cuidador que en el adolescente. Los adolescentes con discinesia ciliar primaria presentan un impacto emocional mayor que los adolescentes con fibrosis quística. No se encontraron diferencias en los cuidadores según el diagnóstico. El estado emocional, la calidad de vida y la percepción de amenaza de la enfermedad del adolescente estaban relacionados con el estado emocional del cuidador y se explicaban por él, y viceversa. Por lo tanto, parece existir cierto grado de contagio emocional entre los miembros de la díada. Se trata de un estudio preliminar que no se ha realizado previamente y que ayuda a comprender los aspectos psicológicos asociados a estas enfermedades favoreciendo el ajuste del paciente y asegurar así un manejo más eficaz de la enfermedad y la adherencia al tratamiento. (AU)

Efecto de una intervención cognitivo-conductual en cuidadores de niños con TEA: depresión, ansiedad, estrés y calidad de vida / Effect of a cognitive-behavioral intervention on caregivers of children with ASD: depression, anxiety, stress, and quality of life

Este estudio tuvo como objetivo evaluar el efecto de una intervención cognitivo conductual en la sintomatología de depresión, ansiedad y estrés, la sobrecarga percibida y la calidad de vida en cuidadores de niños con trastorno del espectro autista. Se realizó un estudio experimental con grupo intervención y control, con mediciones de autorreporte pretest-postest. Participaron en el estudio un total de 53 cuidadores: 22 en el grupo experimental y 31 en el grupo control en lista de espera. La mayoría de los participantes fueron mujeres de entre 35 y 64 años, casadas o en una relación formal, con estudios profesionales o superiores y que realizaban alguna actividad remunerada. Los resultados del análisis intergrupal mostraron una disminución de la sintomatología asociada al estrés y sobrecarga percibida y un aumento en la calidad de vida en el grupo experimental. Los datos intragrupales dan cuenta de que, los sujetos del grupo control no tuvieron cambios en ninguna variable, por el contrario, en el grupo experimental se observa una disminución significativa en los índices de ansiedad, estrés y sobrecarga percibida y un aumento en la calidad de vida. Todos estos cambios ocurrieron con tamaños de efecto mediano y grande. Se analizan los mecanismos de cambio y se discuten los hallazgos del estudio a la luz de sus limitaciones. Se concluye que una intervención cognitivo conductual es una estrategia con efectos positivos para brindar apoyo psicológico a los cuidadores de niños con autismo. (AU)

This study aimed to evaluate the effect of a cognitive behavioral intervention on symptoms of depression, anxiety and stress, perceived overload and quality of life in caregivers of children with autism spectrum disorder. An experimental study was conducted out with an intervention and control group, with self-report pretest-posttest measurements. A total of 53 caregivers participated in the study: 22 in the experimental group and 31 in the waiting list control group. The majority of participants were women between 35 and 64 years old, married or in a formal relationship, with professional or higher education and who carried out some paid activity. The results of the intergroup analysis showed a decrease in the symptoms associated with stress and perceived overload and an increase in the quality of life in the experimental group. Intra-group data showed that the subjects of the control group had no change in any variable, in contrast, in the experimental group there was a significant decrease in anxiety, stress and perceived overload indices and an increase in the quality of life. All these changes occurred with medium and large effect sizes. The mechanisms of change are analyzed and the study's findings are discussed in light of its limitations. It is concluded that a cognitive behavioral intervention is a strategy with positive effects for providing psychological support to caregivers of children with autism. (AU)

[Factors associated with caregiver burden in primary caregivers of older adults with type2 diabetes]. / Factores asociados a la sobrecarga del cuidador en cuidadores primarios de personas adultas mayores con diabetes tipo2.

OBJECTIVE: To characterize the profile of the informal primary caregiver (IPC) of adult patients with type2 diabetes (T2D) and the possible factors associated with caregiver collapse (CC). DESIGN: Observational, descriptive, cross-sectional and analytical study. SITE: Ambulatory Care Medical Unit. PARTICIPANTS: Mexican CPIs of adult patients with T2D. MAIN MEASUREMENTS: Data were collected through a prolective design using the Zarit scale and a structured survey on sociodemographic factors. A descriptive statistical analysis and univariate and multivariate logistic regression models were performed. RESULTS: The CPI profile is assumed by: women, people aged 36-58, daughters, people with a secondary and high school educational level, married, Catholic, with income <8,900 Mexican pesos, own home, inhabited by a maximum of 5 inhabitants, with support networks, who have dedicated >5years to the care of their patient, without training and with chronic diseases. The risk factors that increase the risk of CC are: being a woman (OR=11.03; 95%CI: 1.49-81.95), having a history of more than 5years of having assumed the role of caregiver (OR=2, 65; 95%CI: 1.07-6.55), living in one's own house (OR=3.03; 95%CI: 1.04-8.82), with 6 or more inhabitants (OR=2.41; 95%CI: 1.08-5.38). The support of other family members and/or friends was associated as a protective factor (OR=0.15; 95%CI: 0.07-0.33). CONCLUSIONS: Prevention programs are required to avoid CC and complications, as well as interventions to improve the quality of life of the CPI and patients in care, incorporating strategies to generate and/or increase their family and social support networks.

The burden of disease and quality of life in patients with acute hepatic porphyria: COPHASE study / Carga de la enfermedad y calidad de vida en pacientes con porfiria hepática aguda: estudio COPHASE

Background: Acute hepatic porphyria (AHP) comprises a group of rare genetic diseases characterized by neurovisceral crises that are manifested by abdominal pain and neurological and/or psychological symptoms that interfere with the ability to lead a normal life. Our objective was to determine the burden of the disease in one year and the health-related quality of life (HRQoL) in patients with AHP. Results: 28 patients were analyzed. The mean age was 36.6±10.2 years, 89.3% were women, and the average number of crises was 1.9±1.5. The average annual cost per patient was €38,255.40. 80.2% of the costs was direct medical costs, 17.5% was associated with loss of productivity and 2.3% was direct non-medical costs. 85.9% of the total cost corresponded to the crises. The intercrisis period accounted for the remaining 14.1%. The global index of the EQ-5D-5L (HRQoL) was 0.75±0.24. The dimensions of pain/discomfort, anxiety/depression and daily activities were the most affected. Leisure, travel/vacations and household activities were the most affected daily activities. 53.6% of patients required a caregiver due to AHP. 92.9% did not present overload and 7.1% presented extreme overload. Conclusions: Patients with AHP are associated with a high economic impact and an affected HRQoL in the pain/discomfort dimension, with a negative impact on the performance of daily activities and a risk of psychiatric diseases.(AU)

Antecedentes: La porfiria hepática aguda (PHA) comprende un grupo de enfermedades genéticas raras caracterizadas por crisis neuroviscerales que se manifiestan por dolor abdominal y síntomas neurológicos y/o psicológicos que interfieren en la capacidad de llevar una vida normal. Nuestro objetivo fue determinar la carga de la enfermedad en un año y la calidad de vida relacionada con la salud (CVRS) en pacientes con PHA. Resultados: Se analizaron 28 pacientes. La edad media fue de 36,6±10,2 años, el 89,3% eran mujeres y la media de crisis fue de 1,9±1,5. El coste medio anual por paciente fue de 38.255,40€. El 80,2% de los costes fueron costes médicos directos, el 17,5% estuvieron asociados a pérdida de productividad y el 2,3% fueron costes directos no médicos. El 85,9% del coste total correspondió a las crisis. El período entre crisis representó el 14,1% restante. El índice global del EQ-5D-5L (HRQoL) fue de 0,751±0,24. Las dimensiones de dolor/malestar, ansiedad/depresión y actividades cotidianas fueron las más afectadas. Ocio, viajes/vacaciones y actividades del hogar fueron las actividades diarias más afectadas. El 53,6% de los pacientes requirieron un cuidador debido a la PHA. El 92,9% no presentaron sobrecarga y el 7,1% presentaron sobrecarga extrema. Conclusiones: Los pacientes con PHA se asocian con un alto impacto económico y una CVRS afectada en la dimensión dolor/malestar, con impacto negativo en el desempeño de las actividades diarias y riesgo de enfermedades psiquiátricas.(AU)

The burden of disease and quality of life in patients with acute hepatic porphyria: COPHASE study.

BACKGROUND: Acute hepatic porphyria (AHP) comprises a group of rare genetic diseases characterized by neurovisceral crises that are manifested by abdominal pain and neurological and/or psychological symptoms that interfere with the ability to lead a normal life. Our objective was to determine the burden of the disease in one year and the health-related quality of life (HRQoL) in patients with AHP. RESULTS: 28 patients were analyzed. The mean age was 36.6±10.2 years, 89.3% were women, and the average number of crises was 1.9±1.5. The average annual cost per patient was €38,255.40. 80.2% of the costs was direct medical costs, 17.5% was associated with loss of productivity and 2.3% was direct non-medical costs. 85.9% of the total cost corresponded to the crises. The intercrisis period accounted for the remaining 14.1%. The global index of the EQ-5D-5L (HRQoL) was 0.75±0.24. The dimensions of pain/discomfort, anxiety/depression and daily activities were the most affected. Leisure, travel/vacations and household activities were the most affected daily activities. 53.6% of patients required a caregiver due to AHP. 92.9% did not present overload and 7.1% presented extreme overload. CONCLUSIONS: Patients with AHP are associated with a high economic impact and an affected HRQoL in the pain/discomfort dimension, with a negative impact on the performance of daily activities and a risk of psychiatric diseases.

Experiências de familiares cuidadores de crianças com transtorno do espectro autista e apoio social: subsídios para o cuidado / Experiences of family caregivers of children with autism spectrum disorder and social support: subsidies for care

Este estudo teve como objetivo analisar as experiências das famílias de crianças com Transtorno do Espectro Autista (TEA), a partir da perspectiva do cuidador principal. Trata-se de pesquisa descritiva e exploratória com abordagem qualitativa que diz respeito à atenção à saúde da criança com TEA e à percepção relacionada ao apoio que compõem ou que se ausentam no cotidiano do cuidado vivenciado pela criança e família. O estudo foi desenvolvido em um município do estado de Minas Gerais, Brasil e teve como campos para coleta de dados uma Organização não Governamental e um Núcleo de Ensino e Pesquisa do Desenvolvimento Infantil, vinculado a uma instituição pública federal de ensino superior. Os critérios de inclusão foram familiares de crianças de zero a 6 anos com diagnóstico de TEA nesses serviços; e familiar com mais de 18 anos, identificado como principal cuidador da criança. Para a obtenção dos dados, foram construídos, Genograma e Ecomapa, seguidos de entrevistas semiestruturadas, individuais e audiogravadas. A Análise Temática Indutiva e o Interacionismo Simbólico foram marcos teórico e metodológico que permitiram codificar o corpus analítico. O projeto foi aprovado pelo Comitê de Ética em Pesquisa da Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo e todos os preceitos éticos foram seguidos. Um total de 20 entrevistas foram conduzidas com os cuidadores principais. Verificou-se maior frequência de cuidadores com idade entre 20 e 34 anos (60%), mulher cisgênero (90%), 10% com emprego formal, 50% com ensino médio, 25% em uma união estável e apenas 15% casados. Em relação às crianças com TEA, 70% apresentaram idade entre 26 e 50 meses e destas, 95% eram do sexo masculino. Das entrevistas surgiram cinco temas: "Aproximando-se do TEA: suspeitas e busca por informações"; que destaca a primeira aproximação que os cuidadores tiveram com o transtorno, remetendo a fatores que estreitam a busca pelo diagnóstico; "Confirmando o diagnóstico: sentimentos e percursos", revelando os sentimentos e as percepções que os cuidadores tiveram frente ao diagnóstico, assim como a busca pela assistência e o amparo recebido; "Definindo e reconhecendo o apoio social", evidenciando as dificuldades pela busca de apoio e o que os cuidadores consideravam como apoio social, além de destacarem os tipos de suporte que necessitavam; "Cuidando da criança com TEA: fortalezas e fragilidades", retratando toda a trajetória do cuidador principal, a busca por assistência e o empenho despendido com a criança atrelado aos medos e forças e "Enfrentando e ressignificando o olhar acerca do TEA", abordando a percepção que os cuidadores tinham em relação ao olhar da sociedade perante o TEA e as estratégias que criaram para que pudessem ressignificar suas vivências. O estudo traz considerações relevantes para refletir sobre o quão importante é uma rede de apoio sólida, capaz de fornecer subsídios socioemocionais, físicos, estruturais e financeiros para aquele que desempenha a função de cuidador principal de uma criança com TEA, uma vez que os cuidados são complexos e extrapolam o contexto familiar.

This study aimed to analyze the experiences of families of children with Autism Spectrum Disorder, from the perspective of the primary caregiver. This is a descriptive and exploratory research with a qualitative approach that concerns the healthcare of children with Autism Spectrum Disorder (ASD) and the perception related to the support that comprises or is absent in the daily care experienced by the child and family. Study developed in a municipality in the state of Minas Gerais, Brazil, which data collection took place at a Non-Governmental Organization and at a Child Development Teaching and Research Center, linked to a public higher education institution. The inclusion criteria were family members of children aged zero to 6 years old diagnosed with ASD for at least six months and without other health diagnoses; children who are attended to in these services; and family member over 18 years of age, identified as the child's main caregiver. In order to obtain the data, we construct Genogram and Ecomap with each family caregiver, followed by semi-structured, individual and audio-recorded interview. The Inductive Thematic Analysis and the theoretical framework of Symbolic Interactionism allowed to coding the analytical corpus. The Research Ethics Committee of the Ribeirão Preto College of Nursing at University of São Paulo approved the research and all ethical precepts followed. From 20 interviews conducted, there was a higher frequency of caregivers aged between 20 and 34 years old (60%), cisgender women (90%), 10% with formal employment, 50% with secondary education, 25% in a stable union and only 15% married. Regarding to children with ASD, 70% were aged between 26 and 50 months and of these, 95% were male. We identified five themes which emerged from the interviews: "Approaching ASD: suspicions and search for information"; this highlights the first approach that caregivers had with Autism Spectrum Disorder, referring to factors that narrow the search for diagnosis. "Confirming the diagnosis: feelings and paths", revealing the feelings and perceptions that caregivers had regarding the diagnosis, as well as the search for assistance and the support received. "Defining and recognizing social support", which highlighting the difficulties in seeking support and what caregivers consider as social support, in addition to highlighting the types of support they need. "Caring for a child with ASD: strengths and weaknesses", portraying the entire trajectory of the main caregiver, the search for assistance and the commitment spent on the child linked to fears and strengths. The last theme is "Facing and giving new meaning to the view of ASD", addressing the perception that caregivers have in relation to society's view of ASD and the strategies they created so that they could give new meaning to their experiences. The study brings relevant considerations to reflect on how important a solid support network is, capable of providing socio-emotional, physical, structural and financial support for those who play the role of primary caregiver for a child with ASD, since care is complex and go beyond the family context.

Efficacy of a Hospital Discharge Transition Plan in the care competence of patients with chronic conditions and their family caregivers: a clinical trial / Eficacia del Plan Transicional de Alta Hospitalaria en la competencia para el cuidado del paciente con condición crónica y su cuidador familiar: ensayo clínico / Eficácia do Plano Transicional de Alta Hospitalar na competência para o cuidado de pacientes com condições crônicas e seu cuidador familiar: ensaio clínico

Objective: to assess the efficacy of a Hospital Discharge Transition Plan in the care competence and in adherence to the therapy of dyads comprised by patients with non-communicable chronic diseases and their caregivers. Method: a controlled and randomized clinical trial; the sample was comprised by 80 dyads of patients with chronic conditions and their caregivers, randomly allocated as follows: 40 to the control group and another 40 to the intervention group. The instruments to characterize the patient-caregiver dyad, the patients' and caregivers' care competence and the patients' adherence to the treatment scale were applied. The " CUIDEMOS educational intervention" was applied to the intervention group; in turn, the control group was provided usual care with the aid of a booklet, with phone follow-up via at month 1. Results: 52.5% of the patients and 81.3% of the caregivers were women. The patients' and caregivers' mean ages were 69.5±12.6 and 47.5±13.1 years old, respectively. The Hospital Discharge Transition Plan increased the scores in the "knowledge", "uniqueness", "instrumental", "enjoying", "anticipation" and "social relations" dimensions, as well as the global care competence of the patients and family caregivers; in addition to the following factors: medications, diet, stimulants control, weight control, stress management, and global adherence to the therapy by the patient. There were no statistically significant differences between the control and intervention groups. Conclusion: the Hospital Discharge Transition Plan increased the patients' and family caregivers' care competence after the intervention, as well as the patients' adherence to the treatment. However, there were no differences between the control and intervention groups, possibly due to the similarity of the activities.

Objetivo: evaluar la eficacia del Plan Transicional de Alta Hospitalaria en la competencia para el cuidado y adherencia terapéutica de la díada paciente-cuidador con enfermedad crónica no transmisible. Método: ensayo clínico aleatorizado controlado; la muestra estuvo conformada por 80 diadas paciente-cuidador con condición crónica asignadas aleatoriamente, 40 diadas al grupo control y 40 al grupo intervención. Se aplicaron los instrumentos de caracterización de la díada paciente-cuidador, competencia para el cuidado del paciente y cuidador y la escala de adherencia al tratamiento del paciente. Se realizó la "Intervención Educativa Cuidemos" al grupo intervención y al grupo control se le brindaron los cuidados habituales con ayuda de un folleto; con seguimiento telefónico al mes. Resultados: el 52,5% de los pacientes son mujeres al igual que el 81,3% de los cuidadores. El promedio de edad en pacientes y cuidadores es de 69,5±12,6 y 47,5±13,1 años. El Plan Transicional de Alta Hospitalaria aumentó los puntajes de las dimensiones, conocimiento, unicidad, instrumental, disfrutar, anticipación y relación y la competencia global del cuidado del paciente y cuidador familiar. También, los factores medicamentos, dieta, control de estimulantes, control del peso, manejo del estrés y la adherencia terapéutica global del paciente. No hubo diferencias estadísticamente significativas entre el grupo control e intervención. Conclusión: el Plan Transicional de Alta Hospitalaria aumenta la competencia para el cuidado del paciente y cuidador familiar post intervención, y también la adherencia del paciente. Sin embargo, no hubo diferencias entre el grupo intervención y control, posiblemente debido a la semejanza de las actividades.

Objetivo: avaliar a efetividade do Plano Transicional de Alta Hospitalar na competência para o cuidado e adesão terapêutica da díade paciente-cuidador com doença crônica não transmissível. Método: ensaio clínico randomizado controlado; a amostra foi composta por 80 díades paciente-cuidador com condição crônica distribuídas aleatoriamente, sendo 40 díades para o grupo controle e 40 para o grupo intervenção. Foram aplicados os instrumentos de caracterização da díade paciente-cuidador, competência do cuidar de pacientes e cuidadores e escala de adesão ao tratamento do paciente. No grupo intervenção foi realizada a " Intervención Educativa Cuidemos " e no grupo controle foram prestados os cuidados habituais, com auxílio de folheto; com acompanhamento telefônico após um mês. Resultados: 52,5% dos pacientes são mulheres, assim como 81,3% dos cuidadores. A idade média dos pacientes e cuidadores é de 69,5±12,6 e 47,5±13,1 anos. O Plano Transicional de Alta Hospitalar aumentou os escores das dimensões conhecimento, singularidade, instrumentalidade, desfrutar, antecipação e relação e competência global do cuidado ao paciente e cuidador familiar. Também os fatores medicamentos, dieta, controle de estimulantes, controle de peso, gerenciamento de estresse e adesão terapêutica geral do paciente. Não houve diferenças estatisticamente significativas entre os grupos controle e intervenção. Conclusão: o Plano Transicional de Alta Hospitalar aumenta a competência para o cuidado do paciente e do cuidador familiar pós-intervenção, e também a adesão do paciente. Porém, não houve diferenças entre os grupos intervenção e controle, possivelmente pela semelhança das atividades.

Nursing interventions to empower the family caregiver of person with lower limb amputation: scoping review / Intervenções de Enfermagem para capacitar o cuidador familiar de uma pessoa com amputação de membro inferior: revisão de escopo / Intervenciones de enfermería para capacitar al cuidador familiar de una persona con amputación de miembro inferior: revisión de alcance

ABSTRACT Objectives: to map nursing interventions that empower the Family caregiver of the person with lower limb amputation for is role. Methods: scoping review guided by Joanna Briggs Institute methodology conducted in different databases (including gray literature). Results: six studies published between 2009 and 2021 were included. Interventions of counselling and support for patients and family; peer support interventions performed by a certified pair; involvement of caregivers or family members in support groups; and key interventions for patient and family caregiver psychological balance. Two studies discussed the importance of caregiver and amputee training and development of coping skills. Another study recommended Interventions of informative support for caregivers regarding care for the amputee and adaptation to home. Conclusions: results of this review allow the identification of recommendations (guidelines) for practice and recommendations/suggestions for interventions according with identified needs of family caregivers of patients with lower limb amputation.

RESUMO Objetivos: mapear intervenções de enfermagem que capacitem o cuidador familiar da pessoa com amputação de membro inferior para seu papel. Métodos: revisão de escopo orientada pela metodologia do Joanna Briggs Institute realizada em diferentes bases de dados (incluindo literatura cinzenta). Resultados: foram incluídos seis estudos publicados entre 2009 e 2021. Intervenções de aconselhamento e apoio para pacientes e familiares; intervenções de apoio de pares realizadas por uma dupla certificada; envolvimento de cuidadores ou membros da família em grupos de apoio; e intervenções-chave para o equilíbrio psicológico do paciente e do cuidador familiar. Dois estudos discutiram a importância do treinamento do cuidador e do amputado e do desenvolvimento de habilidades de enfrentamento. Outro estudo recomendou intervenções de suporte informativo para os cuidadores com relação aos cuidados com o amputado e à adaptação ao lar. Conclusões: os resultados dessa revisão permitem a identificação de recomendações (diretrizes) para a prática e recomendações/sugestões para intervenções de acordo com as necessidades identificadas dos cuidadores familiares de pacientes com amputação de membros inferiores.

RESUMEN Objetivos: mapear intervenciones de enfermería que capaciten al cuidador familiar de la persona con amputación de miembro inferior para su rol. Métodos: es una revisión de alcance guiada por la metodología del Instituto Joanna Briggs, llevada a cabo en diferentes bases de datos (incluyendo literatura gris). Resultados: se tuvieron en cuenta seis estudios publicados entre 2009 y 2021, a saber: intervenciones de asesoramiento y apoyo para pacientes y familiares; intervenciones de apoyo entre iguales realizadas por un par de profesionales certificados; participación de cuidadores o familiares en grupos de apoyo e intervenciones clave para el equilibrio psicológico del paciente y del cuidador familiar. Dos estudios analizaron la importancia de la formación del cuidador y del amputado y del desarrollo de habilidades de afrontamiento. Otro estudio recomendó intervenciones de apoyo informativo para los cuidadores en relación con el cuidado del amputado y su adaptación a la vida hogareña. Conclusiones: los resultados de esta revisión permiten identificar recomendaciones/directrices para la práctica y recomendaciones/sugerencias de intervenciones según las necesidades identificadas de los cuidadores familiares de pacientes con amputación de miembros inferiores.

[Interventions for functionally dependent adults and their caregivers during the COVID-19 pandemic]. / Intervenciones para adultos con dependencia funcional y sus cuidadores durante la pandemia de COVID-19.

The COVID-19 pandemic has affected the world population, especially people from social groups in a situation of greater vulnerability among people with some functional dependency. Therefore, the aim of this review was to describe interventions during the pandemic to preserve general health, maintain function and independence, and prevent COVID-19 infection for functionally dependent adults (FDA). A systematic search in databases was carried out. Titles and abstracts of each publication were reviewed for relevance. Full-text articles were accessed by two independent reviewers. The information found was classified into three categories: 1) FDA during the COVID-19 pandemic, 2) FDA during the COVID-19 pandemic according to a specific condition (neurological conditions, sensory disabilities/impairments, and cognitive impairment), and 3) Older adults with functional dependence. The FDAs have faced difficulties and barriers during the COVID-19 pandemic. Strengthening strategies such as telerehabilitation is suggested to avoid deterioration or aggravation of the functionality of dependent people.

Reducing the burden of caregivers in Huntington's by using an online interventional neuropsychological approach: a pilot study / Reduzindo a sobrecarga dos cuidadores na doença de Huntington usando uma abordagem neuropsicológica interventiva online: um estudo piloto

ABSTRACT Huntington's disease (HD) is a hereditary, neurodegenerative disease characterized by motor, cognitive, and behavioral issues. As the disease progresses, people become dependent on their caregivers leading to a significant burden. There is a lack of effective neuropsychological intervention to support this population. Objective: To develop an online neuropsychological intervention and evaluate its effects in decreasing the HD caregiver burden. Methods: This qualitative pilot study was conducted online during the COVID-19 pandemic in Brazil. We selected a convenience sample of five informal caregivers of HD patients (mean 46.2 years old). At baseline, participants were assessed via an individual online neuropsychology interview/screening, covering demographic data. Subsequently, we conducted 20 online 90-minute sessions of the psychological consultation over 12 months. Each session was structured in three stages: 1) Welcoming; 2) Breathing and mindfulness practice; and 3) Discussion of themes about the group's needs based on the main complaints. A second intervention assessment was applied. Results: None of the caregivers were provided with details about HD at the time of diagnosis and later care. The necessity to care for a person with a rare genetic disease was added to caregivers' already-existing working routine and home services, causing a symptom of overload. After the neuropsychological intervention, all participants reported feeling less burdened by caring, improved self-care and conflict resolution with the person with HD through expanding behavioral repertoire focused on emotions and communication. Conclusion: Online neuropsychologic intervention can reduce the burden of HD caregivers. More comprehensive studies should investigate these findings.

RESUMO A doença de Huntington (DH) é hereditária e neurodegenerativa, caracterizada por problemas motores, cognitivos e comportamentais. À medida que avança, os pacientes dependem cada vez mais de cuidadores, gerando uma sobrecarga significativa. Há uma carência de intervenções neuropsicológicas eficazes para apoiar esta população. Objetivo: Desenvolver uma intervenção neuropsicológica online e avaliar seus efeitos na redução da sobrecarga do cuidador em DH. Métodos: Este estudo piloto qualitativo ocorreu online, durante a pandemia de COVID-19 no Brasil. Selecionamos uma amostra de conveniência de cinco cuidadores informais de pacientes com DH (média de 46,2 anos). Inicialmente, realizamos triagens neuropsicológicas online, abrangendo dados demográficos e entrevistas. Subsequentemente, conduzimos 20 sessões de 90 minutos ao longo de 12 meses, estruturadas em: 1) acolhimento, 2) prática de respiração e mindfulness e 3) discussão das necessidades do grupo com base nas principais queixas. Após a intervenção, realizamos uma segunda avaliação. Resultados: Constatamos que os cinco cuidadores não foram adequadamente educados pelos profissionais de saúde sobre a DH após o diagnóstico. A responsabilidade de cuidar da pessoa com DH foi agregada à sua rotina de trabalho e serviços domiciliares, ocasionando um sintoma de sobrecarga. Após a intervenção neuropsicológica online, todos os participantes relataram menos sobrecarga relacionada ao cuidado das pessoas com DH, melhoraram o autocuidado e a resolução de conflitos por meio da ampliação do repertório comportamental focado nas emoções e na comunicação. Conclusão: A intervenção neuropsicológica online pode diminuir a sobrecarga dos cuidadores em DH. Estudos mais abrangentes devem investigar esses resultados.

Psychosocial factors affected by burden in family caregivers of people with Alzheimer's disease / Fatores psicossociais afetados pela sobrecarga em cuidadores familiares de pessoas com doença de Alzheimer

ABSTRACT The world's population is experiencing an aging process, which is resulting in an increase in diseases such as Alzheimer's disease. Consequently, more and more people need care, which can lead to overload and harm to their family's quality of life. Objective: Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer's disease. Methods: Forty-nine family caregivers of people with Alzheimer's disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer's Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR). Results: All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001). Conclusion: This study demonstrates that family caregivers of people with Alzheimer's disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.

RESUMO A população mundial vive um processo de envelhecimento que está resultando no aumento de doenças, como a doença de Alzheimer. Consequentemente, cada vez mais pessoas necessitam de cuidados, o que pode gerar sobrecarga e prejuízos à qualidade de vida de seus familiares. Objetivo: Identificar os fatores psicossociais afetados pela sobrecarga em cuidadores familiares de pessoas com doença de Alzheimer. Métodos: Participaram do estudo 49 cuidadores familiares de pessoas com doença de Alzheimer, de um município de Minas Gerais, Brasil. Os participantes preencheram um formulário de variáveis sociodemográficas e responderam à escala de Sobrecarga (BI-Zarit), à escala de Qualidade de Vida na Doença de Alzheimer versão Cuidador (CQdV-DA), à escala de Depressão, Ansiedade e Estresse (DASS-21), à escala de Atenção Plena e Consciência (MAAS) e à escala de Avaliação Clínica de Demência (CDR). Resultados: Todos os participantes eram do sexo feminino, com idade média de 54,26 (±8,99). As filhas representaram 77,55% da amostra e 34,69% eram cuidadoras exclusivas. A escala Bi-Zarit correlacionou-se positiva e significativamente com a DASS-21 Depressão (r=0,440; p=0,002), DASS-21 Ansiedade (r=0,415; p=0,003), DAAS-21 Estresse (r=0,583; p<0,001). Por outro lado, mostrou correlação negativa com MAAS (r=-0,429; p=0,002) e CQoL-AD (r=-0,533; p<0,001). Conclusão: Este estudo demonstra que os cuidadores familiares de pessoas com doença de Alzheimer podem estar sobrecarregados e que, quanto maior a sobrecarga, menor o nível de atenção, pior a qualidade de vida e maior a possibilidade de apresentar sintomas de depressão, ansiedade, estresse.

Esclerose lateral amiotrófica: implicações para familiares cuidadores / Amyotrophic lateral sclerosis: implications for family caregivers / Esclerosis lateral amiotrófica: implicaciones para los cuidadores familiares

Objetivo: descrever as dificuldades de adaptação dos familiares cuidadores de pacientes portadores de Esclerose Lateral Amiotrófica (ELA), cadastrados na central de Medicamentos de Alto Custo da Regional de Saúde Pirineus, na cidade de Anápolis -GO. Método: Trata-se de um estudo de abordagem qualitativa com o método descritivo. Os participantes foram previamente selecionados mediante adequação aos critérios de inclusão e concordância em fazer parte da pesquisa. A coleta de dados deu-se em local escolhido pelos mesmos, por meio de entrevista gravada em smartphone. A análise dos dados deu-se concomitante e após o termino da coleta. Resultados:Para a obtenção dos resultados e discussão foram entrevistados 4 (quatro) estão apresentados em 6 categorias, sendo elas: dificuldades para o cuidado; sobrecarga do cuidador; aceitação familiar; arendizado e dúvidas dos cuidadores; sobre atendimento; adaptação para os cuidados no núcleo familiar. Diante disto evidenciou-se as implicações ligadas a equipe de saúde, que são: a necessidade da equipe de saúde se manter informada não só sobre as mudanças relacionadas a doença, como também as dificuldades enfrentadas pela família, para que seja auxiliada em relação às suas dúvidas e durante a adaptação e a progressão da doença. Conclusão:estudo procura trazer um novo olhar que vai além do paciente, evidenciando as necessidades da família, tratando não somente o paciente, mas também cada família dentro de suas particularidades

Objective:describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis -GO. Method:This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Dataanalysis was conducted concurrently with and after data collection. Results:For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficultiesfaced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion:the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities.

Objetivo: Describir las dificultades de adaptación de los cuidadores familiares de pacientes con Esclerosis Lateral Amiotrófica (ELA), registrados en el Centro de Medicamentos de Alto Costo de la Región Sanitaria Pirineus, en la ciudad de Anápolis -GO. Método:Estudio cualitativo con método descriptivo. Los participantes fueron previamente seleccionados de acuerdo con el cumplimiento de los criterios de inclusión y el acuerdo para participar en la investigación. La recolección de datos se llevó a cabo en un lugar elegido por ellos, a través de entrevistas grabadas en un teléfono inteligente. El análisis de los datos se realizó de forma concomitante y una vez finalizada la recolección de datos. Resultados:Para obtener los resultados y la discusión, 4 (cuatro) encuestados son presentados en 6 categorías, a saber: dificultades para el cuidado; carga del cuidador; aceptación familiar; y dudas de los cuidadores; sobre el servicio al cliente; Adaptación al cuidado en el núcleo familiar. Frente a esto, se evidenciaron las implicaciones relacionadas con el equipo de salud, las cuales son: la necesidad de que el equipo de salud esté informado no solo sobre los cambios relacionados a la enfermedad, sino también sobre las dificultades enfrentadas por la familia, para que puedan ser ayudados en relación a sus dudas y durante la adaptación y progresión de la enfermedad. Conclusión:este estudio busca aportar una nueva mirada que vaya más allá del paciente, resaltando las necesidades de la familia, tratando no solo al paciente, sinotambién a cada familia dentro de sus particularidades.

Salud mental en cuidadores de pacientes pediátricos con enfermedades crónicas en República Dominicana / Caregivers' mental health of pediatric patients with chronic health diseases in the Dominican Republic

Introducción: La enfermedad crónica infantil se refiere a condiciones en pacientes pediátricos que generalmente son de duración prolongada, no se resuelven por sí solas, y están asociadas con deficiencia o discapacidad. Esta condición usualmente afecta las actividades normales del niño y requiere hospitalizaciones frecuentes, atención médica domiciliaria y/o atención médica extensa, lo que suele afectar además de quien lo padece a sus cuidadores, quienes con frecuencia presentan características asociadas a estrés y agotamiento llegando a provocar enfermedades físicas y mentales como parte del "síndrome de sobrecarga del cuidador". Metodología: Se realizó una encuesta a cuidadores de pacientes pediátricos del Hospital Pediátrico Doctor Hugo Mendoza, el instrumento de recolección incluye 9 ítems que evalúa la presencia y gravedad de síntomas depresivos en las últimas 2 semanas previas a la entrevista, y los datos fueron analizados en el Programa estadístico SPSS. El estudio contó con la aprobación del comité de ética institucional del Hospital y los participantes otorgaron su consentimiento voluntario explícito antes de la recopilación de datos. Resultados: Al aplicar la clasificación de la escala del BAI, se evidencia que, del total de cuidadores encuestados, el 76.7% parecía sufrir de ansiedad muy baja, un 20.9% de ansiedad moderada y 2.3% de ansiedad severa. Se aplicó la la escala PHQ9, una escala que mide la presencia de síntomas depresivos y mostró que el 41.9 % presenta un nivel leve, 39.5% un nivel mínimo, 16.3% un nivel moderado y por último solo 2.3% un nivel moderado-grave de síntomas depresivos. Discusión: En nuestro estudio hubo igual distribución de hombres y de mujeres. Conclusión: El diagnóstico infantil no juega un papel determinante en la aparición de la ansiedad y la depresión.

Introduction: Chronic childhood disease refers to conditions in pediatric patients that are generally of prolonged duration, do not resolve on their own, and are associated with deficiency or disability. This condition normally affects the normal activities of the child and requires frequent hospitalizations, home health care and/or extensive medical care, which will affect, in addition to those who will usually suffer from it, their caregivers, who often have characteristics associated with stress and exhaustion, reaching causing physical and mental illness as part of "caregiver overload syndrome". Methodology: A survey was conducted on caregivers of pediatric patients at the Doctor Hugo Mendoza Pediatric Hospital, the collection instrument includes 9 items that assess the presence and severity of depressive symptoms in the last 2 weeks prior to the interview, and the data were analyzed in the statistical program SPSS. The study was approved by the institutional ethics committee of the Hospital and the participants gave their explicit voluntary consent before data collection. Results: When applying the classification of the BAI scale, it is evident that, of the total number of caregivers surveyed, 76.7% seemed to suffer from very low anxiety, 20.9% from moderate anxiety and 2.3% from severe anxiety. The PHQ9 scale was applied, a scale that measures the presence of depressive symptoms and showed that 41.9% present a mild level, 39.5% a minimum level, 16.3% a moderate level and finally only 2.3% a moderate-severe level of depressive symptoms. Discussion: In our study there was equal distribution of men and women. Conclusion: Childhood diagnosis does not play a determining role in the appearance of anxiety and depression.

Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador / Occupational performance skills in Parkinson’s disease: relationship with health-related quality of life and caregiver burden

Introducción: La progresión de la enfermedad de Parkinson (EP) da lugar a una pérdida de la capacidad para realizar actividades de la vida diaria y de la calidad de vida relacionada con la salud. Los objetivos de este estudio fueron establecer las relaciones entre las habilidades de desempeño ocupacional y la calidad de vida relacionada con la salud, y el grado de carga del cuidador en pacientes con EP. Pacientes y métodos: Participaron en el estudio 49 sujetos en diferentes estadios de EP según la escala de Hoehn y Yahr. Los pacientes fueron evaluados usando el cuestionario de la enfermedad de Parkinson (PDQ-39), el EuroQoL (EQ-5D), la evaluación de las habilidades motoras y de procesamiento (AMPS), y la entrevista de Zarit sobre la carga del cuidador (ZCBI). Resultados: Se encontraron fuertes correlaciones entre la sección de habilidades motoras de la AMPS y el PDQ-39 (r = –0,76; p = 0,001), y los cuestionarios EQ-5D (r = 0,72; p = 0,001), mientras que se encontraron correlaciones moderadas con las habilidades de procesamiento. Las habilidades de procesamiento de la AMPS se correlacionaron moderadamente con la movilidad y las actividades de la vida diaria. La ZCBI sólo se correlacionó débilmente con las habilidades motoras de la AMPS (r = –0,34; p = 0,02). Conclusión: Las puntuaciones decrecientes en la AMPS están estrechamente relacionadas con la pérdida de calidad de vida relacionada con la salud en pacientes con EP y, en menor medida, con el grado de carga del cuidador.(AU)

Introduction: The progression of Parkinson’s disease (PD) results in a loss of ability to performance activities of daily living and health-related quality of life. The objectives of this study were to establish the relations between occupational performance skills and health-related quality of life, and the degree of caregiver burden in PD patients. Patients and methods: Forty-nine patients at different stages of PD according to the Hoehn and Yahr scale participated in the study. Patients were assessed using the Parkinson’s Disease Questionnaire (PDQ-39), the EuroQoL (EQ-5D), the Assessment of Motor and Process Skills (AMPS), and the Zarit Caregiver Burden Interview (ZCBI). Results: Strong correlations were found between the motor skills section of the AMPS scale and the PDQ-39 (r = –0.76; p = 0.001), and the EQ-5D questionnaires (r = 0.72; p = 0.001), while moderate correlations were found with the process skills. AMPS process skills were moderately correlated with mobility and activities of daily living. The ZCBI was only weakly correlated with the AMPS motor skills (r = –0.34; p = 0.02). Conclusion: Declining scores on the AMPS scale are closely related to the loss of health-related quality of life in PD patients, and, to a lesser extent, with the degree of caregiver burden.(AU)