Beneficios de pertenecer a un grupo de apoyo de cuidadoras de niños con discapacidad múltiple: un estudio cualitativo / Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study

RESUMEN Objetivo. Explorar la percepción de los beneficios de participar en un grupo de apoyo de cuidadoras de niños con discapacidad múltiple. Materiales y métodos. Estudio cualitativo, enfoque etnográfico focalizado, realizado de octubre del 2022 a febrero del 2023, muestreo por conveniencia, participaron 20 cuidadoras de niños con discapacidad múltiple. La información se recolectó mediante observación participante, grupos de discusión y entrevistas semiestructuradas. Se realizó análisis temático aplicando las propuestas por Braun y Clark. Resultados. Los temas emergentes fueron: red de apoyo social: integrarse, informarse y ayudarse mutuamente; espacio de aprendizaje: se aprende a cuidar y a cuidarse; promueve el empoderamiento: identificar y enfrentar barreras de acceso. Conclusiones. El grupo de apoyo funciona como una red de apoyo social, proporciona información, reduce la incertidumbre, facilita el afrontamiento y la resiliencia tras el nacimiento y crianza de un hijo con discapacidad múltiple. Espacio donde se aprende a cuidar y a cuidarse a sí mismo y donde se promueve el empoderamiento para la defensa de los derechos de los niños con discapacidad.

ABSTRACT Objective . To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. Materials and methods. A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark's proposals. Results. The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. Conclusions. We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.

Homecare skills and overburden of caregivers of hospitalized chronic patients / Competência de cuidado e sobrecarga do cuidador da pessoa com doença crônica hospitalizada / Competencia del cuidar y sobrecarga del cuidador de la persona con enfermedad crónica hospitalizada

Objective: To describe care competence and its association with overburden of caregivers of patients with chronic diseases. Method: Quantitative, descriptive, cross-sectional study, with a convenience sample. Three instruments were used for data collection: the GCPC-UN instrument for caregiver-patient characterization, the Homecare Skills Questionnaire (CUIDAR, as per its name in Spanish), and the Zarit Burden Interview. Participants in this study were 102 caregivers of people hospitalized in a health institution who met the inclusion criteria. Results: Caregivers were mainly women, had a low level of education, high burden (56.8%), and high level of care competence (68.6%). A statistically significant correlation was found between overburden and overall scores on the CUIDAR instrument, as well as with the following categories: knowledge, uniqueness and anticipation. Conclusion: Homecare competence is associated with overburden of caregivers of people with CNCDs. Therefore, nursing teams have to identify the needs of caregivers and take action so as to contribute to seamless transitions to patients' homes.

Competência do cuidar e seu impacto na qualidade de vida de cuidadores / Competencias del cuidar y su impacto en la calidad de vida de cuidadores / Care competence and its impact on the quality of life of caregivers

Resumo Objetivo Descrever a relação entre a competência do cuidar e a qualidade de vida do cuidador familiar da pessoa hospitalizada com doença crônica. Métodos Estudo quantitativo, descritivo, de correlação e corte transversal. Foi utilizada uma amostragem por conveniência. Participaram 102 cuidadores de pessoas hospitalizadas em uma instituição de saúde. Para a coleta de dados, foram utilizados três instrumentos: ficha de caracterização do par cuidador-pessoa com doença crônica, qualidade de vida do cuidador informal e competência para o cuidado no lar. Resultados Houve predomínio de cuidadores do sexo feminino (74,5%), percepção negativa do bem-estar social e espiritual e percepção positiva do bem-estar psicológico e físico. Foi encontrada uma correlação entre o bem-estar psicológico e o espiritual. As dimensões do instrumento competência para o cuidado no lar se correlacionaram com o bem-estar psicológico, social e espiritual da qualidade de vida, mas não se correlacionaram com o bem-estar físico. Conclusão Este estudo mostra que a feminização dos cuidadores persiste, assim como a dedicação por longos períodos de tempo ao cuidado da pessoa enferma, afetando o bem-estar social e espiritual da qualidade de vida. Nesse cenário, é importante manter altos escores nas diferentes dimensões do instrumento competência para o cuidado no lar para melhorar a qualidade de vida dos cuidadores e prevenir a sobrecarga.

Resumen Objetivo Describir la relación entre las competencias del cuidar y la calidad de vida del cuidador familiar de la persona hospitalizada con enfermedad crónica. Métodos Estudio cuantitativo, descriptivo, de correlación y corte transversal. Se utilizó un muestreo por conveniencia. Participaron 102 cuidadores de personas hospitalizadas en una institución de salud. Para la recopilación de datos se utilizaron tres instrumentos: ficha de caracterización del par cuidador y persona con enfermedad crónica, calidad de vida del cuidador informal y competencias para el cuidado en el hogar. Resultados Hubo predominio de cuidadores de sexo femenino (74,5 %), percepción negativa del bienestar social y espiritual y percepción positiva del bienestar psicológico y físico. Se observó una correlación entre el bienestar psicológico y espiritual. Las dimensiones del instrumento de competencias para el cuidado en el hogar se correlacionaron con el bienestar psicológico, social y espiritual de la calidad de vida, pero no se correlacionaron con el bienestar físico. Conclusión Este estudio muestra que la feminización de los cuidadores persiste, así como la dedicación al cuidado de la persona enferma por períodos prolongados de tiempo, lo que afecta el bienestar social y espiritual de la calidad de vida. Ante este contexto, es importante mantener una puntuación alta en las diferentes dimensiones del instrumento de competencias para el cuidado en el hogar para mejorar la calidad de vida de los cuidadores y prevenir la sobrecarga.

Abstract Objective To describe the relationship between the quality of life of caregivers and their competence of caring for a person hospitalized with a chronic condition. Methods Quantitative, descriptive, correlation and cross-sectional study, with a convenience sample. Participants of this study were 102 caregivers of people hospitalized in a health institution, located in Neiva, Huila, Colombia. Three instruments were used for data collection: Caregiver-patient characterization survey, Caregiver's quality of life, and Homecare competency. Results Caregivers were mainly women (74.5%), with a negative perception of social and spiritual well-being, and a positive perception of psychological and physical well-being. A correlation was found between psychological and spiritual well-being. The dimensions of the Homecare competency instrument were related to the psychological, social, and spiritual well-being of quality of life, but they were not related to physical well-being. Conclusion This study shows that the feminization of caregivers persists, along with the dedication for long periods of time to the care of the sick person, thus affecting the social and spiritual well-being of quality of life. In face of this scenario, it is important to keep high scores in the different dimensions of the Homecare competency instrument to improve the quality of life of caregivers and prevent overload.

Habilidad de cuidado en cuidadores familiares de personas con enfermedad crónica y sobrecarga percibida / Caring ability in family caregivers of people with chronic disease and perceived overload

RESUMEN Objetivo: Analizar las características sododemográficas del cuidador-persona con enfermedad crónica no transmisible y la asociación entre habilidad de cuidado, sobrecarga percibida por el cuidador y características sociodemográficas del cuidador-persona con enfermedad crónica no transmisible hospitalizada en una institución de alta complejidad. Material y método: Estudio analítico, descriptivo, correlacional, corte transversal, con 89 cuidadores. La información se recolectó mediante la utilización de los instrumentos: Ficha de caracterización de la díada, Inventario de Habilidad de Cuidado y la Escala de sobrecarga de Zarit. Resultados: Los cuidadores poseen bajo nivel de habilidades de cuidado (84,3%) y refieren ausencia de sobrecarga (70,8%). Se encontró asociación significativa, entre habilidad, sobrecarga y algunas características de la díada y del cuidado (p<0,05). Conclusión: Los resultados muestran afectación en la habilidad del cuidado y ausencia de sobrecarga, así como asociación entre habilidad y sobrecarga de los cuidadores, lo cual impacta la posibilidad de resolver las necesidades de cuidado de las personas dependientes.

ABSTRACT Objective: To analyze the sociodemographic characteristics of the caregiver-person with a chronic non-communicable disease and the association between caregiving ability, caregiver perceived overload, and the sociodemographic characteristics of the caregiver-person with a chronic non-communicable desease hospitalized in a high complexity center. Material and method: Analytical, descriptive, correlational, cross-sectional study, carried out with 89 caregivers. Data were collected using the following instruments: Dyad Characterization Card, Caring Ability Inventory and Zarit Overload Scale. Results: Caregivers have a low level of caring abilities (84.3%) and report absence of overload (70.8%). A significant association was found between caring ability, overload and some characteristics of caregiving and dyads p <0.05. Conclusion: Results show an impact on caring ability and absence of overload, as well as an association between ability and caregiver's overload, which affects the possibility of solving care needs of people.