Reacciones adaptativas de cuidadores informales de un hijo con diagnóstico de discapacidad en el departamento del Atlántico
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Fecha
2021
Autores
García Cantillo, Clara Camila
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Ediciones Universidad Simón Bolivar
Facultad de Ciencias Jurídicas y Sociales
Facultad de Ciencias Jurídicas y Sociales
Resumen
La labor del cuidador informal adquiere una gran relevancia para la persona a quien cuida, es decir, los cuidadores informales, también llamados primarios, familiares, o principales (Cantillo et al., 2018; Arias-Rojas et al., 2021), ocupan un lugar esencial en el cuidado de la discapacidad, asumiendo la responsabilidad principal, pero no profesional de los cuidados. Consiste en una labor no visibilizada, no remunerada, (Ley 041 y 267 de 2020), carente de valor laboral y legislativo (García-Cantillo et al., 2021a).
Objetivos: Comprender las reacciones adaptativas que emplean los cuidadores informales de un hijo (a) con diagnóstico de discapacidad en el departamento del Atlántico desde un enfoque de género y revisión de políticas públicas, para formular nuevos modelos de intervención donde el abordaje de las personas con discapacidad incluya el apoyo psicológico al cuidador.
Materiales y Métodos: Investigación cualitativa con paradigma y diseño fenomenológico. Los sujetos de investigación fueron 40 cuidadores informales (madres y padres) de un hijo (a) con diagnóstico de discapacidad. Se empleó la entrevista en profundidad y, el grupo focal; y se aplicaron la Escala de Afrontamiento de Lázarus y Folkman, y la Escala de Zarit. Para el procedimiento se usó el software Atlas ti, Nvivo y Maxqda.
Resultados: Se presentan de acuerdo con la perspectiva sobre las políticas públicas dirigidas al acompañamiento al cuidador; y a las reacciones adaptativas de acuerdo con el género, con el tipo de discapacidad, y la sobrecarga. Los hombres reaccionan vivenciando el cuidado como una oportunidad y una fortaleza (reevaluación positiva), no presentan sobrecarga, pero evidencian necesidad de apoyo femenino (búsqueda de apoyo social, autocontrol). Las mujeres reaccionan experimentando estrés (confrontación, huida-evitación, planificación), y presentan
sobrecarga intensa atribuida a la intensidad horaria. Los cuidadores de discapacidad intelectual presentaron mejor afrontamiento debido a que unas reacciones son más adaptativas que otras; esto depende del tiempo de cuidado y de la discapacidad que cuidan.
Conclusiones: Desde este abordaje psicológico del cuidado al cuidador, se proponen intervenciones que mejoren la salud de los cuidadores. Estas deben centrarse en el género y la sobrecarga, debido al estrés sobre la salud; enfocándose con urgencia en la salud mental de las cuidadoras. Se requiere hacer énfasis en el afrontamiento, la conciencia de autocuidado, la resiliencia, y el manejo del estrés. Y, se reconoce que los cuidadores merecen visibilización legislativa en la construcción de nuevas políticas públicas que develen el impacto que tiene la labor de cuidado sobre el cuidador y la persona a quien cuida.
The work of the informal caregiver acquires great relevance for the person he/she cares for, that is, informal caregivers, also called primary, family, or principal (Cantillo et al., 2018; Arias-Rojas et al., 2021), occupy an essential place in disability care, assuming the main, but not professional responsibility for care. It consists of a non-visibilized, non-remunerated work, (Law 041 of 2020), lacking labor and legislative value (García-Cantillo et al., 2021a). Objective: To understand the adaptive reactions used by informal caregivers of a child with a diagnosis of disability in the department of Atlántico from a gender approach and review of public policies, to formulate new intervention models where the approach to people with disabilities includes psychological support to the caregiver. Materials and Methods: Qualitative research with phenomenological paradigm and design. The research subjects were 40 informal caregivers (mothers and fathers) of a child with a diagnosis of disability. The in-depth interview and the focus group were used; and the Lazarus and Folkman Coping Scale and the Zarit Scale were applied. Atlas ti, Nvivo and Maxqda software were used for the procedure. Results: The results are presented according to the perspective on public policies aimed at accompanying the caregiver; and to the adaptive reactions according to gender, type of disability, and overload. Men react by experiencing caregiving as an opportunity and a strength (positive re-evaluation), they do not present overload, but show a need for female support (search for social support, self-control). Women react by experiencing stress (confrontation, flight-avoidance, planning), and present intense overload attributed to hourly intensity. Intellectual disability caregivers presented better coping because some reactions are more adaptive than others; this depends on the time of caregiving and the disability cared for. Conclusions: From this psychological approach to caregiving, interventions that improve the health of caregivers are proposed. These should focus on gender and overload, due to stress on health, focusing urgently on the mental health of caregivers. Emphasis is needed on coping, self-care awareness, resilience, and stress management. And it is recognized that caregivers deserve legislative visibility in the construction of new public policies that reveal the impact of caregiving on the caregiver and the person being cared for.
The work of the informal caregiver acquires great relevance for the person he/she cares for, that is, informal caregivers, also called primary, family, or principal (Cantillo et al., 2018; Arias-Rojas et al., 2021), occupy an essential place in disability care, assuming the main, but not professional responsibility for care. It consists of a non-visibilized, non-remunerated work, (Law 041 of 2020), lacking labor and legislative value (García-Cantillo et al., 2021a). Objective: To understand the adaptive reactions used by informal caregivers of a child with a diagnosis of disability in the department of Atlántico from a gender approach and review of public policies, to formulate new intervention models where the approach to people with disabilities includes psychological support to the caregiver. Materials and Methods: Qualitative research with phenomenological paradigm and design. The research subjects were 40 informal caregivers (mothers and fathers) of a child with a diagnosis of disability. The in-depth interview and the focus group were used; and the Lazarus and Folkman Coping Scale and the Zarit Scale were applied. Atlas ti, Nvivo and Maxqda software were used for the procedure. Results: The results are presented according to the perspective on public policies aimed at accompanying the caregiver; and to the adaptive reactions according to gender, type of disability, and overload. Men react by experiencing caregiving as an opportunity and a strength (positive re-evaluation), they do not present overload, but show a need for female support (search for social support, self-control). Women react by experiencing stress (confrontation, flight-avoidance, planning), and present intense overload attributed to hourly intensity. Intellectual disability caregivers presented better coping because some reactions are more adaptive than others; this depends on the time of caregiving and the disability cared for. Conclusions: From this psychological approach to caregiving, interventions that improve the health of caregivers are proposed. These should focus on gender and overload, due to stress on health, focusing urgently on the mental health of caregivers. Emphasis is needed on coping, self-care awareness, resilience, and stress management. And it is recognized that caregivers deserve legislative visibility in the construction of new public policies that reveal the impact of caregiving on the caregiver and the person being cared for.
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Reacciones adaptativas, Género, Afrontamiento, Cuidadores, Estrés, Sobrecarga, Discapacidad, Adaptive reactions, Gender, Coping, Caregivers, Stress, Burden, Disability