RESUMO
The aim of the study was to assess the impact of the strategies of coping with the family crisis in children and adolescents with idiopathic scoliosis on the level of their family's quality of life (FQOL). The study group consisted of 100 adolescents (girls 83%, boys 17% of the entire main group) with an average age of 14 (13.83 ± 1.92). The control group consisted of the same number of people as the study group (girls 78%, boys 22% of the entire control group) with an average age of 14 (14.09 ± 2.16). The FQOL scale was used to assess the family's quality of life, and the F-COPES scale was used to assess the problem-solving strategies used by the family (individual members) in a difficult life situation. Statistical analysis showed significant differences between the two compared groups. While dealing with a crisis situation in their families, adolescents treated for idiopathic scoliosis were using the spiritual support strategy (M ± SD 5.12 ± 2.07) significantly more often, while their healthy peers much more willingly and more often benefited from other possible strategies (F-COPES). Additionally, statistically significant differences were observed in the assessment of children and adolescents from both groups that the usage of different strategies available on the F-COPES scale correlated and affected the areas of the FQOL level of their families. Gaining spiritual support had a negative impact on the area of physical and financial well-being of FQOL, as assessed by juveniles with SI (R = -0.254, p = 0.011). However, in the opinion of healthy peers, the strategy of gaining social support (F-COPES) resulted in a higher level of FQOL in the area of disability problems (p = 0.005). A long process of SI treatment can cause crisis situations for patients and their families and affect both the physical and mental health of patients by changing the FQOL level of their families.
Assuntos
Qualidade de Vida , Escoliose , Criança , Masculino , Feminino , Adolescente , Humanos , Qualidade de Vida/psicologia , Família/psicologia , Adaptação Psicológica , Apoio SocialRESUMO
Early Intensive Behavioural Intervention (EIBI) is effective for preschoolers with autism spectrum disorder (ASD). Parental measures are rarely included in EIBI effectiveness studies, yet parental distress and lower self-efficacy are associated with poorer child outcomes. Parents of preschoolers with ASD (N = 485) were surveyed at baseline (T1), one-year post-intervention (T2), and school entry (T3) about family distress/crisis, parental self-efficacy, and satisfaction with services in two Canadian provinces. Family distress/crisis decreased and parental self-efficacy increased from T1 to T2. Increases in self-efficacy were largely maintained at T3. Parents were highly satisfied with services. Greater satisfaction for those residing in the province utilizing a parent-coaching model suggests that parent involvement is associated with positive parent outcomes.
Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtorno do Espectro Autista/complicações , Transtorno do Espectro Autista/terapia , Transtorno Autístico/complicações , Transtorno Autístico/terapia , Canadá , Criança , Pré-Escolar , Humanos , Pais , Instituições AcadêmicasRESUMO
The 'family crisis' narrative is frequently used in dementia studies to explain ethnic minority families' pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers' agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families' pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the 'family crisis' narrative as it illuminates the agency of carers' in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities.
Assuntos
Cuidadores , Demência , Idoso , Austrália , Etnicidade , Humanos , Grupos MinoritáriosRESUMO
Resumen La familia es considera como una institución en constante cambio. A pesar de ello el legislador pretende mantener su estructura desde una posición religiosa, tradicional, conservadora, matrimonial y basada en relaciones de pareja monogámica y heterosexual. No obstante, las manifestaciones sociales y culturales han logrado el reconocimiento de estructuras familiares diferentes a las normativizadas, en aplicación de los principios de igualdad y equidad, y en garantía de derechos patrimoniales y personales, como en el caso del concubinato. Objetivo: Establecer el desarrollo y evolución jurisprudencial en Colombia de la Corte Suprema de Justicia y la Corte Constitucional que llevaron al concubinato de la ilegalidad a su reconocimiento como estructura familiar con protección jurídica. Materiales y métodos: Se revisó la jurisprudencia sobre el concubinato de ambas Cortes y se clasificaron en tres categorías: las que comenzaron a reconocerla como familia y establecieron requisitos para ello; las que cambiaron estos requisitos y las que establecieron diferencias con la unión marital de hecho. Resultados: Se demuestra cómo se cambió de una situación ilícita a una estructura familiar con reconocimiento jurídico, aunque no legal y, una vez más que, el derecho de familia en Colombia es ineficaz para reconocer los derechos personales y patrimoniales que se derivan de las relaciones familiares emergentes. Conclusión: Los resultados se enmarcan en las discusiones actuales de las ciencias sociales sobre la familia como una institución en permanente cambio, sin que ello implique que se encuentre en crisis, debido a que se trata de una comprensión desde los fines, roles y funciones que aquella cumple en la sociedad y no desde su estructura.
Abstract Introduction: The family is considered as an institution in constant change. In spite of this, the legislator intends to maintain its structure from a religious, traditional, conservative, matrimonial perspective and based on monogamous and heterosexual couple relationships. However, social and cultural manifestations have achieved the recognition of family structures different from those regulated, in application of the principles of equality and equity, and in guarantee of patrimonial and personal rights, as in the case of concubinage. Objective: Establish the development and jurisprudential evolution in Colombia of the Supreme Court of Justice and the Constitutional Court that led to the concubinage from illegality to its recognition as a family structure with legal protection. Materials and methods: The jurisprudence on the concubinage of both Courts was reviewed and classified into three categories: those that began to recognize it as a family and established requirements for it, those that changed these requirements and those that established differences with the marital union in fact. Research Result: It demonstrates how to change from an illegal situation to a family structure with legal recognition, although not legal and, once again, how family law in Colombia is ineffective when recognizing the personal and patrimonial rights that derive from emerging family relationships. Conclusion: The results are framed in the current discussions of the social sciences on the family as an institution in permanent change, without implying that it is in crisis, because it is an understanding from the ends, roles and functions that the family fulfills in society and not from its structure.
Resumo Introdução: A família é considerada como uma instituição em constante mudança. Apesar disso, o legislador pretende manter sua estrutura a partir de uma posição religiosa, tradicional, conservadora, matrimonial e baseada em relacionamentos monogâmicos e heterossexuais nos casais. No entanto, as manifestações sociais e culturais tem conseguido o reconhecimento de estruturas familiares diferentes às normalizadas na aplicação dos princípios de igualdade e equidade e, na garantia dos direitos patrimoniais e pessoais, como é o caso do concubinato. Objetivo: Estabelecer o desenvolvimento e evolução jurisprudencial na Colômbia do Tribunal Supremo da Justiça e do Tribunal Constitucional que levaram ao concubinato da ilegalidade ao seu reconhecimento como estrutura familiar com proteção jurídica. Materiais e métodos: Revisou-se a jurisprudencia sob o concubinato de ambos os Tribunais e classificaram-se em três categorias: aqueles que começaram a reconhecer-lo como família e estabeleceram requisitos para isso; aqueles que mudaram estes requisitos e aqueles que estabeleceram diferenças com a união conjugal de fato. Resultados: demonstra-se como mudar de uma situação ilegal para uma estrutura familiar com reconhecimento jurídico, embora não seja legal e, mais uma vez, o direito de família na Colômbia é ineficaz para reconhecer os direitos pessoais e patrimoniais que derivam das relações familiares emergentes. Conclusão: Os resultados são enquadrados nas discussões atuais das ciências sociais sob a família como uma instituição em constante transformação, sem implicar que está em crise, pois trata-se de uma compreensão dos propósitos, papéis e funções que a sociedade cumpre e não de sua estrutura.
RESUMO
O câncer infantojuvenil é uma doença que causa desequilíbrio físico, emocional e social em toda a família, especialmente na mãe, que é uma fonte importante de cuidado no processo da doença. Este estudo analisou o impacto familiar da leucemia em quatro estágios da doença: após o diagnóstico (mãe 1), durante o tratamento (mãe 2), manutenção (mãe 3) e cuidados paliativos (mãe 4). Em aplicações individuais, as mães responderam ao PedsQLTM Family Impact Module, com 36 itens e oito dimensões. Todas as famílias foram afetadas pela doença, diferencialmente em cada fase e dimensão, em ordem decrescente: M4 (cuidados paliativos) – M2 (tratamento) – M1 (diagnóstico) – M3 (manutenção); com maior impacto em atividades diárias (M2) e funcionamento cognitivo e relacionamento (M4). Avaliar esses casos clínicos, considerando o estágio da doen ça e variáveis emocionais maternas, pode subsidiar intervenções no processo de enfrentamento de um dos maiores estressores da vida, que é a ameaça de morte do filho.
Child cancer is a disease that brings physical, emotional, and social imbalance to the patient’s whole family, especially his/her mother. During the disease process, she is a unity of care and support. This study analyzed the impact of leukemia on family at four different stages. It does so based on accounts of four mothers: account of one mother related to post diagnosis (M1); one related to treatment process (M2); one related to health maintenance (M3); and one related to palliative care (M4). They answered individually to PedsQLTM Family Impact Module questionnaire, which comprises 36 questions and eight dimensions. Leukemia affected all four families differently at each stage and dimension and in descending order: M4; M2; M1; M3. Disease’s impact was stronger on daily activities (M2) and cognitive functioning and relationships (M4). Assessing such clinical cases by taking into account disease’s stages and mother’s emotional variables may help to interfere with the process of coping with a major life stressor: the threat of her child’s death.
El cáncer infantil es una enfermedad que afecta física, emocional y socialmente toda la familia, especialmente la madre, que es una fuente importante de cuidados en el proceso de la enfermedad. Este estudio examinó el impacto de la leucemia en la familia basado en la experiencia de cuatro madres: la experiencia de una madre después del diagnóstico (M1); de otra durante el tratamiento (M2); de otra en mantenimiento de la salud (M3); y finalmente de una madre en materia de los cuidados paliativos. Las madres respondieron el cuestionario individual PedsQLTM Family Impact Module, con 36 itens y ocho dimensiones. Todas las familias fueran afectadas por la enfermedad de manera diferente en cada etapa y dimensión, en orden descendiente: M4; M2; M1; M3; el mayor impacto fue en las actividades diarias (M2), las relaciones personales y en el funcionamiento cognitivo (M4). Evaluar estos casos clínicos de acuerdo con las etapas de la enfermedad y las variables emocionales maternas pueden apoyar las intervenciones en el proceso de hacer frente a uno de los mayores factores de estrés de la vida: la amenaza de la muerte de un niño.
RESUMO
Introducción: con la prolongación de la esperanza de vida ha aumentado la incidencia y prevalencia de enfermedades que aparecen en edades avanzadas, entre ellas las demencias. Objetivo: caracterizar a las familias de adultos mayores con deterioro cognitivo según variables de interés. Métodos: estudio descriptivo de corte transversal en familias de adultos mayores con deterioro cognitivo pertenecientes al Consejo Popular Alcides Pino del municipio Holguín en el año 2010. Se trabajó con 139 familias identificadas por el geriatra o por los médicos de consultorios. Para la recogida de la información, se utilizaron la entrevista y el análisis documental y se aplicó un instrumento específico para clasificar a las familias según su funcionamiento. Resultados: se encontró que el 41,6 por ciento eran familias ampliadas y el 38,8 por ciento extensa, el 36,1 por ciento y el 30,6 por ciento estaban en etapa de contracción y disolución, respectivamente. Todas las familias tenían crisis familiares con predominio de las paranormativas en el 86,1 por ciento. El afrontamiento a la enfermedad del anciano fue inadecuado en el 88,9 por ciento de las familias y el 38,9 por ciento eran disfuncionales. Conclusiones: las familias del Consejo Popular Alcides Pino, que conviven con adultos mayores con deterioro cognitivo están muy lejos de ser la red de apoyo que necesitan estas personas en el proceso de su enfermedad
Introduction: the extension of life expectancy has increased the incidence and prevalence of diseases that occur at older ages such as dementias. Objective: to characterize the families of the older adults with cognitive impairment, according to variables of interest. Methods: cross-sectional descriptive study conducted on families of older adults with cognitive impairment in Alcides Ríos people´s council located in Holguín municipality during 2010. The sample was made up of 139 families identified by the geriatricians or by the family physicians. For data collection, the interviews and the documentary review were used together with a customized instrument to classify families on the basis of their functioning. Results: it was found that 41.6 percent of the sample was extended families and 38.8 percent corresponded to big families; 36.1 percent and 30.6 percent of them were getting smaller or were vanishing respectively. All these families faced some family crisis with para-normative crises in 86.1 percent of cases. Inadequate management of the old person´s disease was seen in 88.9 percent of families whereas 38.9 percent of them were dysfunctional. Conclusions: the families of older people with cognitive impairment in Alcides Pino people´s council were far from being the adequate supporting network required by these elders
Assuntos
Disfunção Cognitiva/prevenção & controle , Saúde da Família , Saúde do IdosoRESUMO
O objetivo deste estudo foi o de avaliar o envolvimento dos pais das camadas médias e médias altas na educação escolar dos filhos. Para isso, foram realizadas entrevistas semiestruturadas com 21 pais cujos filhos estudam em escolas particulares. A análise dos resultados revelou pais e mães muito envolvidos com a escolaridade dos filhos, que afirmaram não delegar à escola tarefas como a formação de valores e o estímulo à disciplina. Algumas sugestões foram elaboradas para que a escola desenvolva uma parceria efetiva com as famílias de seus alunos: estabelecer relações simétricas e de corresponsabilidade com os pais, oferecendo a eles espaços de reflexão sobre as questões que vivenciam com seus filhos.
The aim of this study was to assess the involvement of both middle class and upper middle class parents in their children's education. Semi-structured interviews were carried out with 21 parents whose children attend private schools. The analysis of the results has revealed that, because they are deeply involved in their children's learning, parents are willing to take an active part in teaching their kids positive values as well as the importance of discipline. Some suggestions have been made for the school to develop an effective school-parent partnership, establishing symmetrical relationships and co-responsibility with parents, and maintaining an open-mind dialogue around children's problems.
El objetivo de este estudio fue evaluar el envolvimiento de los padres de clase media y clase media alta en la educación de sus hijos. Para eso fueron realizadas encuestas semiestructuradas con 21 personas entre ellas parejas y madres cuyos hijos estudian en escuelas particulares. El análisis de los resultados reveló padres y madres que están muy envolvidos con la escolaridad de sus hijos y que afirmaron no delegar a la escuela tareas como la formación de valores y el estímulo a la disciplina. Algunas sugestiones fueron elaboradas para que la escuela desenvuelva una sociedad efectiva con las familias de sus alumnos: establecer relaciones simétricas y de coresponsabilidad con los padres, ofreciéndoles espacios para reflexionar sobre cuestiones vivenciadas con sus hijos.
RESUMO
O objetivo deste estudo foi o de avaliar o envolvimento dos pais das camadas médias e médias altas na educação escolar dos filhos. Para isso, foram realizadas entrevistas semiestruturadas com 21 pais cujos filhos estudam em escolas particulares. A análise dos resultados revelou pais e mães muito envolvidos com a escolaridade dos filhos, que afirmaram não delegar à escola tarefas como a formação de valores e o estímulo à disciplina. Algumas sugestões foram elaboradas para que a escola desenvolva uma parceria efetiva com as famílias de seus alunos: estabelecer relações simétricas e de corresponsabilidade com os pais, oferecendo a eles espaços de reflexão sobre as questões que vivenciam com seus filhos.(AU)
The aim of this study was to assess the involvement of both middle class and upper middle class parents in their children's education. Semi-structured interviews were carried out with 21 parents whose children attend private schools. The analysis of the results has revealed that, because they are deeply involved in their children's learning, parents are willing to take an active part in teaching their kids positive values as well as the importance of discipline. Some suggestions have been made for the school to develop an effective school-parent partnership, establishing symmetrical relationships and co-responsibility with parents, and maintaining an open-mind dialogue around children's problems.(AU)
El objetivo de este estudio fue evaluar el envolvimiento de los padres de clase media y clase media alta en la educación de sus hijos. Para eso fueron realizadas encuestas semiestructuradas con 21 personas entre ellas parejas y madres cuyos hijos estudian en escuelas particulares. El análisis de los resultados reveló padres y madres que están muy envolvidos con la escolaridad de sus hijos y que afirmaron no delegar a la escuela tareas como la formación de valores y el estímulo a la disciplina. Algunas sugestiones fueron elaboradas para que la escuela desenvuelva una sociedad efectiva con las familias de sus alumnos: establecer relaciones simétricas y de coresponsabilidad con los padres, ofreciéndoles espacios para reflexionar sobre cuestiones vivenciadas con sus hijos.(AU)