Maira Deguer Misko

Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families’ daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

Managing cancer and its intercurrences: the family deciding to seek emergency care for the child

Este estudio busco entender como hace la familia del nino con el cancer para manejar la enfermedady sus intercurrencias en la casa, y como hace la familia para tomar la decision de llevar al nino a un servicio deemergencia. La historia oral fue utilizada como estrategia metodologica, y el analisis de los datos fue basadaen el “Family Management Style Framework”. Los participantes eran seis madres, con edad entre 28 y 47 anos,que vivenciaban el tratamiento del cancer de su nino. La posible necesidad de la atencion de emergencia seincorpora dentro de la rutina de la familia como recurso para manejar la enfermedad siempre que vaya masalla de la capacidad de la madre en guardar el control sobre los sintomas, lo que es rodeado de sufrimiento,debido a las incertidumbres generadas por esa situacion. Ayudar a la madre en el desarrollo de habilidadespara se fortalecer y reducir el sufrimiento resultante de las situaciones que generan incertidumbres yinseguridades en su vida de cada dia con el nino con el cancer es un desafio.DESCRIPTORES: pediatria; familia; enfermeria oncologica; nino

Morte digna da criança: percepção de enfermeiros de uma unidade de oncologia

Se objetivo identificar el significado y las intervenciones de enfermeros actuantes en oncologia pediatrica en la promocion de la muerte digna del nino. Se utilizaron interaccionismo simbolico e investigacion narrativa como referenciales teoricos y metodologicos. Datos obtenidos de ocho enfermeros de una unidad de oncologia pediatrica de hospital publico de Sao Paulo, mediante entrevistas semiestructuradas. El analisis permitio la identificacion de cinco categorias: Sentirse sin autonomia para la toma de decisiones; Cuidado de la familia; Ofrecer bienestar fisico; Valorizar el cuidado humanizado y Aprender a enfrentarse con la muerte y el morir. El estudio contribuye a ampliar la comprension de este proceso de cuidados y permite avanzar en la postulacion de un cuadro teorico que contemple la integracion de conocimientos y acciones que constituyan una atencion integral, trascendiendo la atencion de necesidades meramente clinicas y biologicas.The objective of this study was to identify the meaning of dignified death and the interventions employed by nurses in pediatric oncology to promote dignified death for children. We used Symbolic Interaction Theory as the theoretical framework and narrative research methods. The data were collected from eight nurses in the pediatric oncology unit of a public hospital in Sao Paulo through semi-structured interviews. The data analysis revealed five categories: feeling no autonomy in decision-making, caring for the family, offering physical comfort, valuing humanized care and learning to deal with death and dying. This study helps to extend the understanding of this process of care and postulates a theoretical framework that integrates the knowledge and actions that constitute care that transcends clinical and biological needs.

Histórias de vida de familiares de crianças com doenças graves: relação entre religião, doença e morte

This qualitative study aimed to get to know the relationship between the experiences of families of children with a life-threatening disease and their religion, illness and life histories. The methodological framework was based on Oral History. The data were collected through interviews and the participants were nine families from six different religions who had lived the experience of having a child with a life-threatening disease. The interviews, held with one or two family members, were transcribed, textualized and, through their analysis, the Vital Tone was elaborated, representing the moral synthesis of each narrative. Three dimensions of spirituality were related to illness and death in their life histories: a Higher Being with a healing power; Development and Maintenance of a Connection with God and Faith Encouraging Optimism. The narratives demonstrated the familys search to attribute meanings to their experiences, based on their religious beliefs.Trata-se de pesquisa qualitativa com o objetivo de conhecer a relacao entre as experiencias de familias de criancas que vivenciaram uma doenca grave com a sua religiao, doenca e suas historias de vida. O referencial metodologico usado foi a Historia Oral. Participaram deste estudo nove familias de seis diferentes religioes, as quais ja vivenciaram a experiencia de ter uma crianca gravemente doente. As entrevistas, realizadas com um ou dois membros da familia da crianca, foram transcritas, textualizadas e, a partir de sua analise, elaborado o Tom Vital que representa a sintese moral da narrativa. Tres dimensoes da religiosidade/espiritualidade foram relacionadas a doenca e morte em suas historias de vida: Ser Superior com Poder de Cura; Desenvolvimento e Manutencao de uma Conexao com Deus e a Fe Encorajando o Otimismo. As narrativas evidenciaram a busca da familia por atribuir significados as experiencias vivenciadas, a partir de suas crencas religiosas.

The Relationship Between Religion, Illness and Death in Life Histories of Family Members of Children With Life-Threatening Diseases

This qualitative study aimed to get to know the relationship between the experiences of families of children with a life-threatening disease and their religion, illness and life histories. The methodological framework was based on Oral History. The data were collected through interviews and the participants were nine families from six different religions who had lived the experience of having a child with a life-threatening disease. The interviews, held with one or two family members, were transcribed, textualized and, through their analysis, the Vital Tone was elaborated, representing the moral synthesis of each narrative. Three dimensions of spirituality were related to illness and death in their life histories: a Higher Being with a healing power; Development and Maintenance of a Connection with God and Faith Encouraging Optimism. The narratives demonstrated the familys search to attribute meanings to their experiences, based on their religious beliefs.Trata-se de pesquisa qualitativa com o objetivo de conhecer a relacao entre as experiencias de familias de criancas que vivenciaram uma doenca grave com a sua religiao, doenca e suas historias de vida. O referencial metodologico usado foi a Historia Oral. Participaram deste estudo nove familias de seis diferentes religioes, as quais ja vivenciaram a experiencia de ter uma crianca gravemente doente. As entrevistas, realizadas com um ou dois membros da familia da crianca, foram transcritas, textualizadas e, a partir de sua analise, elaborado o Tom Vital que representa a sintese moral da narrativa. Tres dimensoes da religiosidade/espiritualidade foram relacionadas a doenca e morte em suas historias de vida: Ser Superior com Poder de Cura; Desenvolvimento e Manutencao de uma Conexao com Deus e a Fe Encorajando o Otimismo. As narrativas evidenciaram a busca da familia por atribuir significados as experiencias vivenciadas, a partir de suas crencas religiosas.

Manejando o câncer e suas intercorrências: a família decidindo pela busca ao atendimento de emergências para o filho

Este estudio busco entender como hace la familia del nino con el cancer para manejar la enfermedady sus intercurrencias en la casa, y como hace la familia para tomar la decision de llevar al nino a un servicio deemergencia. La historia oral fue utilizada como estrategia metodologica, y el analisis de los datos fue basadaen el “Family Management Style Framework”. Los participantes eran seis madres, con edad entre 28 y 47 anos,que vivenciaban el tratamiento del cancer de su nino. La posible necesidad de la atencion de emergencia seincorpora dentro de la rutina de la familia como recurso para manejar la enfermedad siempre que vaya masalla de la capacidad de la madre en guardar el control sobre los sintomas, lo que es rodeado de sufrimiento,debido a las incertidumbres generadas por esa situacion. Ayudar a la madre en el desarrollo de habilidadespara se fortalecer y reducir el sufrimiento resultante de las situaciones que generan incertidumbres yinseguridades en su vida de cada dia con el nino con el cancer es un desafio.DESCRIPTORES: pediatria; familia; enfermeria oncologica; nino

Cultural adaptation of the Family Management Measure among families of children and adolescents with chronic diseases

Objetivos: realizar la adaptacion cultural del Family Management Measure para el idioma portugues de Brasil. Metodo: el metodo obedecio las recomendaciones internacionales para este tipo de estudio, compuesta por las siguientes etapas: traduccion del instrumento para la lengua portuguesa; obtencion del consenso de las versiones traducidas; evaluacion por el comite de especialistas; retro-traduccion y pre-prueba. Resultados: esas etapas permitieron el alcance de las equivalencias conceptuales de items, semantica, idiomaticas, operacionales y la validacion del contenido. Conclusion: el Family Management Measure se presenta adaptado para el idioma portugues de Brasil ahora denominado de Instrumento de Medida de Manejo Familiar.Objectives to perform the cultural adaptation of the Family Management Measure into the Brazilian Portuguese language. Method the method complied with international recommendations for this type of study and was composed of the following steps: translation of the instrument into the Portuguese language; reaching consensus over the translated versions; assessment by an expert committee; back translation; and pretest. Results these stages enabled us to obtain conceptual, by-item, semantic, idiomatic, and operational equivalences, in addition to content validation. Conclusion the Family Management Measure is adapted to the Brazilian Portuguese language and that version is named Instrumento de Medida de Manejo Familiar.

The practice of nurses caring for families of pediatric inpatients in light of Jean Watson

Objective To know the facilities and the difficulties of nurses in caring practice of hospitalized children’s families in the light of Jean Watson’s Theory of Human Caring. Method It was used the descriptive qualitative approach. The data collection was conducted in three stages: presentation of theoretical content; engagement with families in the light of Watson’s theory; and semi-structured interview with 12 pediatric nurses. The interviews were analysed using inductive thematic analysis, being possible to form three themes: Recognizing a framework for care; Considering the institutional context; and Challenges in family’s relationship. Results The theory favored reflections about self, about the institutions and about nurses’ relationship with the family of the child, normalized by a consciousness toward caring attitudes. Conclusion In this process, it is imperative that nurses recognize the philosophical-theoretical foundations of care to attend the child’s family in hospital.

[Dignified death for children: perceptions of nurses from an oncology unit].

Se objetivo identificar el significado y las intervenciones de enfermeros actuantes en oncologia pediatrica en la promocion de la muerte digna del nino. Se utilizaron interaccionismo simbolico e investigacion narrativa como referenciales teoricos y metodologicos. Datos obtenidos de ocho enfermeros de una unidad de oncologia pediatrica de hospital publico de Sao Paulo, mediante entrevistas semiestructuradas. El analisis permitio la identificacion de cinco categorias: Sentirse sin autonomia para la toma de decisiones; Cuidado de la familia; Ofrecer bienestar fisico; Valorizar el cuidado humanizado y Aprender a enfrentarse con la muerte y el morir. El estudio contribuye a ampliar la comprension de este proceso de cuidados y permite avanzar en la postulacion de un cuadro teorico que contemple la integracion de conocimientos y acciones que constituyan una atencion integral, trascendiendo la atencion de necesidades meramente clinicas y biologicas.The objective of this study was to identify the meaning of dignified death and the interventions employed by nurses in pediatric oncology to promote dignified death for children. We used Symbolic Interaction Theory as the theoretical framework and narrative research methods. The data were collected from eight nurses in the pediatric oncology unit of a public hospital in Sao Paulo through semi-structured interviews. The data analysis revealed five categories: feeling no autonomy in decision-making, caring for the family, offering physical comfort, valuing humanized care and learning to deal with death and dying. This study helps to extend the understanding of this process of care and postulates a theoretical framework that integrates the knowledge and actions that constitute care that transcends clinical and biological needs.

Adaptação cultural do Family Management Measure para famílias de crianças e adolescentes portadores de doenças crônicas

Objetivos: realizar la adaptacion cultural del Family Management Measure para el idioma portugues de Brasil. Metodo: el metodo obedecio las recomendaciones internacionales para este tipo de estudio, compuesta por las siguientes etapas: traduccion del instrumento para la lengua portuguesa; obtencion del consenso de las versiones traducidas; evaluacion por el comite de especialistas; retro-traduccion y pre-prueba. Resultados: esas etapas permitieron el alcance de las equivalencias conceptuales de items, semantica, idiomaticas, operacionales y la validacion del contenido. Conclusion: el Family Management Measure se presenta adaptado para el idioma portugues de Brasil ahora denominado de Instrumento de Medida de Manejo Familiar.Objectives to perform the cultural adaptation of the Family Management Measure into the Brazilian Portuguese language. Method the method complied with international recommendations for this type of study and was composed of the following steps: translation of the instrument into the Portuguese language; reaching consensus over the translated versions; assessment by an expert committee; back translation; and pretest. Results these stages enabled us to obtain conceptual, by-item, semantic, idiomatic, and operational equivalences, in addition to content validation. Conclusion the Family Management Measure is adapted to the Brazilian Portuguese language and that version is named Instrumento de Medida de Manejo Familiar.