Qualitative Study on Disease Communication Experience between Parents and Cancer Children from the Perspective of Familism / 中国医学伦理学

【Objective:】 To explore the disease communication between cancer children and their parents from the perspective of their parents. 【Methods:】 Using qualitative description method and semi-structured interview, 16 parents from the pediatric oncology department of a tertiary A hospital were collected. Colaizzi 7-step method was used to analyze the interview data and summarize the theme. 【Results:】 Four themes were summarized, including perception of the psychological changes of children after illness, changes in the future planning of children, different attitude towards informing children’s diseases, different opinions on children’s participation in medical decision-making. 【Conclusions:】 The awareness of disease communication and medical decision-making in cancer families is insufficient. It is difficult for parents to communicate actively and effectively with their cancer children, and the children’s families are unable to make clear plans for the children’s future. Therefore, it is necessary to construct a theoretical system of disease communication and medical shared decision-making from the perspective of Chinese familism, and strengthen the promotion of scientific communication methods.

Qualitative Study on the Current Situation of Disease Communication between Cancer Patients and Their Families / 中国医学伦理学

To further explore the current situation of disease communication between cancer patients and their families in clinical practice, and provide decision-making reference for the construction of harmonious doctor-patient relationship. From September to November, 2021, 10 oncologists from a third-class A general hospital in X city were selected for semi-structured interviews by objective sampling method, and Colaizzi seven-step analysis was used to analyze, refine and summarize the interview data. The results showed that the current situation of disease communication between cancer patients and their families can be summarized into three themes: concealing information during the diagnosis period, embarrassing decision-making during the treatment period, and difficult in autonomy at the end stage of the disease. Based on this situation, this paper suggested that a clinical communication mode with medical staff as a bridge and patients and their families actively facing and participating together can be constructed from different dimensions such as disease notification, win-win cooperation and psychological care.

Regime de cuidados no Brasil: uma análise à luz de três tipologias / Care regime in Brazil: an analysis in the light of three typologies / Régimen de cuidados en Brasil: un análisis a la luz de tres tipologías

O objetivo deste artigo é identificar as linhas gerais que caracterizam o regime de cuidados brasileiro. A pesquisa apresenta as tipologias de regimes de cuidados propostas por Esping-Andersen (1999), Leitner (2003) e Saraceno e Keck (2010). A partir do levantamento das políticas de família no Brasil, o artigo enquadra o país nesse referencial. A metodologia utilizada é a análise descritiva de dados. Utilizam-se as projeções populacionais do quantitativo de crianças e idosos do IBGE, a Pesquisa Nacional por Amostra de Domicílios (PNAD), o Censo Escolar e o Censo SUAS (Sistema Único de Assistência Social). Pelas três tipologias analisadas, o Brasil se apresenta como um regime de cuidados que se apoia preferencialmente nas famílias, caracterizando, portanto, um "familismo implícito" ou "familismo por negligência".

This article discusses and categorizes the Brazilian care regime. It presents the care-regimes typologies proposed by Esping-Andersen (1999), Leitner (2003), and Saraceno and Keck (2010) for developed countries. Based on the compilation of family policies within the country, our goal is to place Brazil within this typological framework. The methodology used is descriptive data analysis. We use data from IBGE population projections, for children and elderly counts, the PNAD and the National School Census, and the Unified Social Assistance System (SUAS) Census. In all three typologies, Brazil stands as a care regime which leans mainly on families, with a non-robust and non-widespread care policy, thus featuring an "implicit familism" or "familism by default".

El propósito de este artículo es identificar las líneas generales que caracterizan el régimen brasileño de cuidados. La investigación presenta los tipos de regímenes de cuidado propuestos por Esping-Andersen (1999), Leitner (2003) y Saraceno y Keck (2010). A partir del relevamiento de la encuesta de políticas familiares en Brasil, el artículo enmarca al país en este contexto. La metodología utilizada es el análisis descriptivo de datos. Se usan a para ello las proyecciones poblacionales del número de niños y ancianos del IBGE, la PNAD y el Censo Escolar, y el Censo SUAS. Para las tres tipologías analizadas, Brasil se presenta como un régimen de cuidados que se apoya preferentemente en las familias y se caracteriza por tanto como familismo implícito o familismo por negligencia.

O direito da pessoa idosa ao acompanhante, refletido na compreensão de profissionais da Saúde: uma contribuição ao debate / The elderly person's right to a companion, reflected in the understanding of health professionals: a contribution to the debate / El derecho de las personas mayores a un compañero, reflejado en la comprensión de los profesionales de la salud: una contribución al debate

Identificar a compreensão dos profissionais de saúde, no Brasil, sobre o direito de acompanhante, garantido ao idoso internado em instituições hospitalares, é o principal objetivo deste escrito. A metodologia consiste em uma pesquisa explicativa, com abordagem qualitativa, utilizando-se a revisão integrativa de estudos publicados na Biblioteca Virtual em Saúde. Como resultado principal, observamos que são delegadas aos acompanhantes as mesmas atribuições do cuidador, o que contribui para a designação máxima da responsabilidade do cuidado à família.

Identifying the understanding of health professionals in Brazil about the right to accompanying elderly people hospitalized in hospital institutions is the main objective of this paper. The methodology consists of an explanatory research, with a qualitative approach, using the integrative review of studies published in the Virtual Health Library. As a main result, it was observed that the same responsibilities of the caregiver are delegated to the companion, which contributes to the maximum designation of responsibility for caring for the family.

Identificar la comprensión de los profesionales de la salud, en Brasil, sobre el derecho de un compañero, garantizado a los ancianos hospitalizados en los hospitales, es el objetivo principal de este documento. La metodología consiste en una investigación explicativa, con un enfoque cualitativo, utilizando la revisión integradora de los estudios publicados en la Biblioteca Virtual en Salud. Como resultado principal, observamos que las mismas funciones del cuidador se delegan a los compañeros, lo que contribuye a la designación máxima responsabilidad del cuidado familiar.

O circuito familista na política de assistência social / Familist circuit on social assistance policy

Analisa-se a configuração contemporânea da Política de Assistência Social ao investigar como o Estado e as famílias compartilham responsabilidades de provisão das necessidades básicas dos indivíduos e de combate às privações, vulnerabilidades e riscos sociais. Por meio do método genealógico, faz-se uma análise documental das leis, decretos e demais regulamentos da Política de Assistência Social para elaborar subsídios para a discussão. Argumenta-se que a assistência alçou à condição de Política de Seguridade Social a partir de 1988, por meio da estruturação de um circuito familista complexo, cujas responsabilidades de combater as privações, vulnerabilidades e riscos sociais dos cidadãos estão compartilhadas entre Estado e famílias, ou, ainda, são transferidas legalmente às famílias ou assumidas integralmente por elas quando há omissão do Estado.

It analyzes the contemporary configuration of social assistance policy to investigate how the state and the families share responsibility provision to basic needs of individuals and to combat deprivation and social risks. Through genealogical method, a documentary analysis of the laws was made, decrees and other regulations of social assistance policy to develop subsidies for discussion. It argues that assistance lifted to the status of social security policy from 1988 through the structuring of a familist circuit complex, whose responsibilities to combat deprivation, vulnerability and social risks of the citizens are shared between the state and families, or are still transferred legally to families or fully assumed by them when there is state failure.

Life-or-Death Choice of Critically Ill Patients from the Perspective of Confucian Familism:Thinking on "Qiong Yao Incident" / 中国医学伦理学

"Qiong Yao incident" has triggered a discussion on the life-or-death choice in critically ill patients.Aimed at this problem,this paper analyzed the decision-making short cut of Confucian familism in Confucian life ethics,from the perspective of the implication of Confucian familism in medical ethics,the family consultation principle in medical decision making,the great significance of family-oriented medical decisions for patients and family members,and the family love in hospice care.In addition,it pointed out that hospice care in China is still in the preliminary exploration stage,so we should actively establish a road of hospice care which is suitable for China's national conditions.

Etnoteorias parentais: um estudo com mães residentes no interior e na capital de Santa Catarina / Parental ethnotheories: a study with mothers living in the capital and countryside of Santa Catarina State

O estudo teve como objetivo investigar etnoteorias parentais em mães residentes na capital e interior de Santa Catarina. Foram aplicadas escalas de crenças sobre práticas de cuidado, metas de socialização e alocentrismo familiar em 50 mães de cada contexto cultural. Os resultados na capital indicaram predomínio de elementos autônomo-relacionais em práticas e alocentrismo familiar, enquanto que em termos de metas, as mães valorizaram a autonomia da criança. No interior, no que se refere a metas de socialização e alocentrismo familiar, foram identificados aspectos relacionais. Contudo, em termos de crenças sobre práticas de criação, constatou-se maior valorização da autonomia. Concluiu-se que ambos os contextos caracterizam-se por um modelo de self autônomo-relacional, embora com diferentes ênfases de acordo com a dimensão investigada.

The aim of this study was to investigate parental ethnotheories of mothers living in the capital city and in the countryside of Santa Catarina State. In each cultural environment, fifty mothers were interviewed based on scales that evaluated their beliefs about childrearing practices, socialization goals and degree of familism. Results from the capital demonstrated a predominance of autonomous-related elements for practices and familism, whereas in terms of socialization goals, mothers valued the autonomy of the child. In the countryside, relational aspects were identified for socialization goals and familism. However, for beliefs about childrearing practices it has been noted emphasis on autonomy. The conclusion was that both contexts are characterized by an autonomous-related self, although with different emphases according to the dimension investigated.