Maria Angélica Marcheti Barbosa

Cuidado centrado na família no contexto da criança com deficiência e sua família: uma análise reflexiva

This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care. O CUIDADO CENTRADO NA FAMÍLIA NO CONTEXTO DA CRIANÇA COM DEFICIÊNCIA E SUA FAMÍLIA: UMA ANÁLISE REFLEXIVA RESUMO: Trata-se de uma reflexão teórico-filosófica sobre a perspectiva do Cuidado Centrado na Família e a prática da equipe de saúde no cuidado à criança deficiente e sua família. O nascimento de uma criança com deficiência provoca uma crise que atinge toda a família, abalando sua identidade, estrutura e funcionamento. A família se vê despreparada para enfrentar ou lidar com esse novo modo de ser família, pois o filho deficiente representa a quebra de expectativas, a alteração de papéis e a não-continuidade da família. O Modelo de Cuidado Centrado na Família pode oferecer subsídios para fortalecer a família, estimulando seu potencial e promovendo seu empoderamento. Embora esse modelo reconheça a família como unidade de cuidado, há uma lacuna entre o conhecimento teórico e a aplicação na prática clínica pelo profissional de saúde, revelando a necessidade de ampliar estudos que apontem direções sobre como realizar a transferência de conhecimento. DESCRITORES: Enfermagem familiar. Crianças com deficiência. Cuidados de enfermagem. CUIDADO CENTRADO EN LA FAMILIA EN EL CONTEXTO DE LOS NIÑOS CON DISCAPACIDADES Y SUS FAMILIAS: UNA REVISIÓN REFLEXIVA RESUMEN: Es una reflexión teórico-filosófica sobre la perspectiva del Cuidado Centrado en la Familia con la práctica del equipo de salud en el cuidado al niño con discapacidad y su familia. El nacimiento de un niño con discapacidad provoca una crisis que perjudica toda la familia, con problemas para su identidad, estructura y funcionamiento. La familia se muestra sin preparación para enfrentar ese nuevo modo de verse familia, pues el hijo representa una experiencia traumática que puede alterar el estado emocional entero de los miembros. Las presuposiciones del Cuidado Centrado en la Familia pueden fortalecer a la familia, estimular su potencial y promover el fortalecimiento familiar en su trayectoria con el hijo. Aunque con las presuposiciones del Cuidado Centrado en la Familia se reconozca a la familia como la unidad de cuidado, una laguna se observa entre el conocimiento teórico y de aplicación en la práctica clínica por los profesionales de salud, revelando la necesidad de ampliar los estudios que indiquen caminos hacia la transferencia de conocimientos. DESCRIPTORES: Enfermería de la familia. Niños con discapacidad. Atención de enfermería. 194

Experiences of mothers of disabled children: a phenomenological study

Objective: To unveil the experiences of mothers of disabled children, with a view to understand the meaning of that experience. Methods: This is a qualitative study using phenomenological approach based on Heidegger. The study subjects were five mothers with a disabled child. The interviews were performed at the women’s homes, guided by the question “To you, what does it mean to have a disabled child? Results: Five categories came into focus: “meeting one’s actual infant,” “the impact of disability,” “treading a new path with one’s disabled child,” “experiencing maternal altruism in the care of the disabled child,” and “altering one’s family daily life.” Conclusions: The discourses revealed emotionally moved beings experiencing a painful, sorrowful manner of being-in-the-world. Mothers find themselves unprepared to deal with the experience of having a disabled child, though perceiving the situation as an opportunity for self-encounter. Changes occurred to the couple’s dynamics and family members became distant. When seeking guidance from health professionals, the mothers failed to find the necessary support.

Vivências de mães com um filho deficiente: um estudo fenomenológico

Objective: To unveil the experiences of mothers of disabled children, with a view to understand the meaning of that experience. Methods: This is a qualitative study using phenomenological approach based on Heidegger. The study subjects were five mothers with a disabled child. The interviews were performed at the women’s homes, guided by the question “To you, what does it mean to have a disabled child? Results: Five categories came into focus: “meeting one’s actual infant,” “the impact of disability,” “treading a new path with one’s disabled child,” “experiencing maternal altruism in the care of the disabled child,” and “altering one’s family daily life.” Conclusions: The discourses revealed emotionally moved beings experiencing a painful, sorrowful manner of being-in-the-world. Mothers find themselves unprepared to deal with the experience of having a disabled child, though perceiving the situation as an opportunity for self-encounter. Changes occurred to the couple’s dynamics and family members became distant. When seeking guidance from health professionals, the mothers failed to find the necessary support.

Comunicando à mãe o nascimento do filho com deficiência

OBJETIVO: Conocer como el equipo de salud comunico a la madre el nacimiento de un hijo con deficiencia. METODOS: Estudo descriptivo con abordaje cualitativo. A traves de entrevistas semi-estructuradas, se recolectaron datos de siete madres cuyos hijos tenian deficiencia, atendidos en la Asociacion Pestalozzi de Campo Grande, MS. Los discursos de las madres fueron organizados en unidades tematicas y categorizados segun Bardin. RESULTADOS: Los profesionales de salud no informan a la madre el diagnostico de deficiencia del hijo de manera clara; el abordaje profesional es cerrado al dialogo y las informaciones sobre el hijo son pesimistas y limitantes. CONSIDERACIONES FINALES: Los profesionales de salud precisan estar preparados para dar informaciones a la madre y mostrar las posibilidades de desarrollo del hijo, ademas de proporcionar la atencion necesaria en cuanto a los sentimientos vivenciados por los padres, a fin de garantizar confianza y seguridad en el cuidado del hijo, ayudandolos a superar las dificultades.Objective: To know how health care team members inform mothers that their newborns have disabilities. Methods: Qualitative descriptive study. By conducting semi-structured interviews, data were collected from seven mothers whose children have disabilities and are provided care at Associacao Pestalozzi in Campo Grande, MS, Brazil. The reports of the mothers were organized into theme units and categorized according to Bardin. Results: Health professionals fail to inform mothers of the disabilities of their children in a clear manner; their professional approach is closed to dialogue and the information on the child’s prospects is limiting and pessimistic. Final considerations: Health professionals must be prepared to disclose information to mothers, showing them the available possibilities of development for their children and providing the necessary attention to the feelings experienced by the parents, promoting their trust and confidence, and helping them to deal with their difficulties.

Telling the mother that her newborn has a disability

OBJETIVO: Conocer como el equipo de salud comunico a la madre el nacimiento de un hijo con deficiencia. METODOS: Estudo descriptivo con abordaje cualitativo. A traves de entrevistas semi-estructuradas, se recolectaron datos de siete madres cuyos hijos tenian deficiencia, atendidos en la Asociacion Pestalozzi de Campo Grande, MS. Los discursos de las madres fueron organizados en unidades tematicas y categorizados segun Bardin. RESULTADOS: Los profesionales de salud no informan a la madre el diagnostico de deficiencia del hijo de manera clara; el abordaje profesional es cerrado al dialogo y las informaciones sobre el hijo son pesimistas y limitantes. CONSIDERACIONES FINALES: Los profesionales de salud precisan estar preparados para dar informaciones a la madre y mostrar las posibilidades de desarrollo del hijo, ademas de proporcionar la atencion necesaria en cuanto a los sentimientos vivenciados por los padres, a fin de garantizar confianza y seguridad en el cuidado del hijo, ayudandolos a superar las dificultades.Objective: To know how health care team members inform mothers that their newborns have disabilities. Methods: Qualitative descriptive study. By conducting semi-structured interviews, data were collected from seven mothers whose children have disabilities and are provided care at Associacao Pestalozzi in Campo Grande, MS, Brazil. The reports of the mothers were organized into theme units and categorized according to Bardin. Results: Health professionals fail to inform mothers of the disabilities of their children in a clear manner; their professional approach is closed to dialogue and the information on the child’s prospects is limiting and pessimistic. Final considerations: Health professionals must be prepared to disclose information to mothers, showing them the available possibilities of development for their children and providing the necessary attention to the feelings experienced by the parents, promoting their trust and confidence, and helping them to deal with their difficulties.

Family-centered care in the context of children with disabilities and their families: a reflective review

This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care. O CUIDADO CENTRADO NA FAMÍLIA NO CONTEXTO DA CRIANÇA COM DEFICIÊNCIA E SUA FAMÍLIA: UMA ANÁLISE REFLEXIVA RESUMO: Trata-se de uma reflexão teórico-filosófica sobre a perspectiva do Cuidado Centrado na Família e a prática da equipe de saúde no cuidado à criança deficiente e sua família. O nascimento de uma criança com deficiência provoca uma crise que atinge toda a família, abalando sua identidade, estrutura e funcionamento. A família se vê despreparada para enfrentar ou lidar com esse novo modo de ser família, pois o filho deficiente representa a quebra de expectativas, a alteração de papéis e a não-continuidade da família. O Modelo de Cuidado Centrado na Família pode oferecer subsídios para fortalecer a família, estimulando seu potencial e promovendo seu empoderamento. Embora esse modelo reconheça a família como unidade de cuidado, há uma lacuna entre o conhecimento teórico e a aplicação na prática clínica pelo profissional de saúde, revelando a necessidade de ampliar estudos que apontem direções sobre como realizar a transferência de conhecimento. DESCRITORES: Enfermagem familiar. Crianças com deficiência. Cuidados de enfermagem. CUIDADO CENTRADO EN LA FAMILIA EN EL CONTEXTO DE LOS NIÑOS CON DISCAPACIDADES Y SUS FAMILIAS: UNA REVISIÓN REFLEXIVA RESUMEN: Es una reflexión teórico-filosófica sobre la perspectiva del Cuidado Centrado en la Familia con la práctica del equipo de salud en el cuidado al niño con discapacidad y su familia. El nacimiento de un niño con discapacidad provoca una crisis que perjudica toda la familia, con problemas para su identidad, estructura y funcionamiento. La familia se muestra sin preparación para enfrentar ese nuevo modo de verse familia, pues el hijo representa una experiencia traumática que puede alterar el estado emocional entero de los miembros. Las presuposiciones del Cuidado Centrado en la Familia pueden fortalecer a la familia, estimular su potencial y promover el fortalecimiento familiar en su trayectoria con el hijo. Aunque con las presuposiciones del Cuidado Centrado en la Familia se reconozca a la familia como la unidad de cuidado, una laguna se observa entre el conocimiento teórico y de aplicación en la práctica clínica por los profesionales de salud, revelando la necesidad de ampliar los estudios que indiquen caminos hacia la transferencia de conocimientos. DESCRIPTORES: Enfermería de la familia. Niños con discapacidad. Atención de enfermería. 194

Cuidado centrado en la familia en el contexto de los niños con discapacidades y sus familias: una revisión reflexiva

This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care.This theoretical-philosophical study addresses Family-Centered Care and the practice of healthcare teams in caring for children with disabilities and their families. The birth of a child with a disability brings about a crisis that affects the entire family, shaking its identity, structure, and functioning. Family members find themselves unprepared to cope with or manage this new way of being a family; the child with a disability does not meet expectations, there is change of roles, and families may even break apart. The Family-Centered Care Model can support strengthening of the family, encouraging their potential, and promoting empowerment. Although this model recognizes the family as a unit of care, a gap remains between theoretical knowledge and its application into clinical practice by health professionals, revealing the need for further research to indicate a means to transfer knowledge of this kind. DESCRIPTORS: Family nursing. Disabled children. Nursing care. O CUIDADO CENTRADO NA FAMÍLIA NO CONTEXTO DA CRIANÇA COM DEFICIÊNCIA E SUA FAMÍLIA: UMA ANÁLISE REFLEXIVA RESUMO: Trata-se de uma reflexão teórico-filosófica sobre a perspectiva do Cuidado Centrado na Família e a prática da equipe de saúde no cuidado à criança deficiente e sua família. O nascimento de uma criança com deficiência provoca uma crise que atinge toda a família, abalando sua identidade, estrutura e funcionamento. A família se vê despreparada para enfrentar ou lidar com esse novo modo de ser família, pois o filho deficiente representa a quebra de expectativas, a alteração de papéis e a não-continuidade da família. O Modelo de Cuidado Centrado na Família pode oferecer subsídios para fortalecer a família, estimulando seu potencial e promovendo seu empoderamento. Embora esse modelo reconheça a família como unidade de cuidado, há uma lacuna entre o conhecimento teórico e a aplicação na prática clínica pelo profissional de saúde, revelando a necessidade de ampliar estudos que apontem direções sobre como realizar a transferência de conhecimento. DESCRITORES: Enfermagem familiar. Crianças com deficiência. Cuidados de enfermagem. CUIDADO CENTRADO EN LA FAMILIA EN EL CONTEXTO DE LOS NIÑOS CON DISCAPACIDADES Y SUS FAMILIAS: UNA REVISIÓN REFLEXIVA RESUMEN: Es una reflexión teórico-filosófica sobre la perspectiva del Cuidado Centrado en la Familia con la práctica del equipo de salud en el cuidado al niño con discapacidad y su familia. El nacimiento de un niño con discapacidad provoca una crisis que perjudica toda la familia, con problemas para su identidad, estructura y funcionamiento. La familia se muestra sin preparación para enfrentar ese nuevo modo de verse familia, pues el hijo representa una experiencia traumática que puede alterar el estado emocional entero de los miembros. Las presuposiciones del Cuidado Centrado en la Familia pueden fortalecer a la familia, estimular su potencial y promover el fortalecimiento familiar en su trayectoria con el hijo. Aunque con las presuposiciones del Cuidado Centrado en la Familia se reconozca a la familia como la unidad de cuidado, una laguna se observa entre el conocimiento teórico y de aplicación en la práctica clínica por los profesionales de salud, revelando la necesidad de ampliar los estudios que indiquen caminos hacia la transferencia de conocimientos. DESCRIPTORES: Enfermería de la familia. Niños con discapacidad. Atención de enfermería. 194

Vivencias de las madres con un hijo deficiente: un estudio fenomenológico

Objective: To unveil the experiences of mothers of disabled children, with a view to understand the meaning of that experience. Methods: This is a qualitative study using phenomenological approach based on Heidegger. The study subjects were five mothers with a disabled child. The interviews were performed at the women’s homes, guided by the question “To you, what does it mean to have a disabled child? Results: Five categories came into focus: “meeting one’s actual infant,” “the impact of disability,” “treading a new path with one’s disabled child,” “experiencing maternal altruism in the care of the disabled child,” and “altering one’s family daily life.” Conclusions: The discourses revealed emotionally moved beings experiencing a painful, sorrowful manner of being-in-the-world. Mothers find themselves unprepared to deal with the experience of having a disabled child, though perceiving the situation as an opportunity for self-encounter. Changes occurred to the couple’s dynamics and family members became distant. When seeking guidance from health professionals, the mothers failed to find the necessary support.

Comunicando a la madre el nacimiento de un hijo con discapacidad

OBJETIVO: Conocer como el equipo de salud comunico a la madre el nacimiento de un hijo con deficiencia. METODOS: Estudo descriptivo con abordaje cualitativo. A traves de entrevistas semi-estructuradas, se recolectaron datos de siete madres cuyos hijos tenian deficiencia, atendidos en la Asociacion Pestalozzi de Campo Grande, MS. Los discursos de las madres fueron organizados en unidades tematicas y categorizados segun Bardin. RESULTADOS: Los profesionales de salud no informan a la madre el diagnostico de deficiencia del hijo de manera clara; el abordaje profesional es cerrado al dialogo y las informaciones sobre el hijo son pesimistas y limitantes. CONSIDERACIONES FINALES: Los profesionales de salud precisan estar preparados para dar informaciones a la madre y mostrar las posibilidades de desarrollo del hijo, ademas de proporcionar la atencion necesaria en cuanto a los sentimientos vivenciados por los padres, a fin de garantizar confianza y seguridad en el cuidado del hijo, ayudandolos a superar las dificultades.Objective: To know how health care team members inform mothers that their newborns have disabilities. Methods: Qualitative descriptive study. By conducting semi-structured interviews, data were collected from seven mothers whose children have disabilities and are provided care at Associacao Pestalozzi in Campo Grande, MS, Brazil. The reports of the mothers were organized into theme units and categorized according to Bardin. Results: Health professionals fail to inform mothers of the disabilities of their children in a clear manner; their professional approach is closed to dialogue and the information on the child’s prospects is limiting and pessimistic. Final considerations: Health professionals must be prepared to disclose information to mothers, showing them the available possibilities of development for their children and providing the necessary attention to the feelings experienced by the parents, promoting their trust and confidence, and helping them to deal with their difficulties.