Exploring the Views of Mothers with Special Needs Children Regarding a Healthy Family Structure

Demet Akarcay-Ulutas; Dilara Ustabasi-Gunduz; Ayse Nur Boz; Busra Gurbuz

doi:10.14198/ALTERN.28497

Autores/as

Demet Akarcay-Ulutas KTO Karatay University, Turquía https://orcid.org/0000-0001-5872-2549
Dilara Ustabasi-Gunduz KTO KARATAY UNIVERSITY, Turquía https://orcid.org/0000-0002-8184-8446
Ayse Nur Boz KTO Karatay University, Turquía https://orcid.org/0000-0002-4060-4939
Busra Gurbuz KTO Karatay University, Turquía https://orcid.org/0000-0001-8738-2213

DOI:

https://doi.org/10.14198/ALTERN.28497

Palabras clave:

Madres de niños con necesidades especiales, Educación especial, Familia saludable, Actitud parental, Estilos de afrontamiento, Relaciones familiares

Resumen

Introducción. Comprender las necesidades de las madres y desarrollar estrategias de apoyo adecuadas es fundamental para mantener una estructura familiar saludable. Este estudio investiga las perspectivas de madres con hijos con necesidades especiales respecto a las estructuras familiares saludables. Su objetivo principal fue examinar cuestiones relacionadas con el funcionamiento familiar sano, tales como conductas violentas, actitudes parentales, sistemas de apoyo, mecanismos de afrontamiento y resultados asociados a la maternidad, todo ello a través del prisma de las dinámicas familiares existentes. Metodología. Mediante un enfoque fenomenológico descriptivo y métodos cualitativos, los investigadores entrevistaron a diecisiete madres de niños con necesidades especiales y analizaron los datos mediante un análisis de contenido. Los criterios de selección se limitaron a madres biológicas cuyos hijos fueran menores de 18 años, tuvieran necesidades especiales y estuvieran matriculados en educación especial. Los conceptos que se codificaron con mayor frecuencia fueron el apoyo social, las reflexiones sobre la salud mental y física, las actividades de socialización, las crisis durante el proceso inicial de aprendizaje y las preocupaciones sobre el futuro. Resultados. Los principales hallazgos se basan en códigos con al menos cinco apariciones. Las madres desempeñan un papel esencial en la gestión de sus familias y en el cuidado de los niños con necesidades especiales. Sus responsabilidades aumentan cuando carecen del apoyo adecuado de las personas de su entorno, lo que les provoca estrés y agotamiento. Las barreras para establecer una estructura familiar saludable incluyen el escaso apoyo de la pareja, los problemas de salud mental y la negativa de los padres a compartir las responsabilidades del cuidado infantil. Las madres informaron sobre el distanciamiento con sus hijos, actitudes autoritarias y prácticas disciplinarias que afectan negativamente la dinámica familiar. El estudio pone de manifiesto la pesada carga que asumen las madres debido a la falta de apoyo familiar, destacando la necesidad urgente de asistencia externa. Diversos factores afectan su salud, entre ellos el impacto emocional del cuidado, el aislamiento y la ansiedad. Entre las estrategias de afrontamiento se identifican el establecimiento de redes con otras madres y la búsqueda de recursos educativos para sus hijos. Discusión. Esta investigación subraya la complejidad de las dinámicas en las familias con hijos con necesidades especiales y la necesidad de mejorar los sistemas de apoyo para las madres. Abordar las implicaciones en la salud mental y fomentar la comunicación y la corresponsabilidad dentro de la familia puede contribuir al establecimiento de estructuras familiares más saludables y a mejores resultados para las madres y sus hijos. Se revela cómo las dificultades emocionales afectan a la salud mental y a la dinámica familiar, haciendo hincapié en la importancia de una comunicación efectiva y de sistemas de apoyo sólidos para mejorar el bienestar materno y la cohesión familiar. Conclusiones. El estudio presenta recomendaciones prácticas para ámbitos como la educación especial y la intervención psicosocial, centrándose en los desafíos que enfrentan las madres con hijos con necesidades especiales. Se destaca la importancia de desarrollar programas de apoyo emocional que favorezcan las habilidades sociales de los hijos y la comunicación en la familia, abordando también los retos emocionales de las madres, como la negación y la culpa. La creación de programas grupales donde las madres puedan compartir experiencias puede reducir el sentimiento de aislamiento, mientras que los servicios que fomentan las habilidades para la vida independiente de los hijos son fundamentales para aliviar la preocupación materna por el futuro.

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