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家庭照顾慢性病患儿的状况:一项混合方法研究。

Families' situation of caring for a child with a chronic condition: a mixed methods study.

作者信息

Felizardo Melissa Joice de Abreu, Macêdo Maísa Mara Lopes, Henriques Nayara Luiza, Deodato Sérgio, Duarte Elysângela Dittz

机构信息

Universidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

Universidade Católica Portuguesa, Faculdade de Ciência da Saúde e Enfermagem. Centro de Investigação Interdisciplinar em Saúde. Lisboa, Portugal.

出版信息

Rev Esc Enferm USP. 2024 Mar 8;58:e20230304. doi: 10.1590/1980-220X-REEUSP-2023-0304en. eCollection 2024.

Abstract

OBJECTIVE

To analyze the meanings attributed by family members to the situation of caring for a child with a chronic condition (CCC), in the light of the Family Management Style Framework (FMSF).

METHOD

A mixed-methods, parallel-convergent study, guided by the FMSF theoretical framework, using the conceptual component "Definition of the Situation". Fifty-three CCC families took part. Data was collected using a semi-structured interview, a questionnaire to characterize the participants and a Family Management Measure scale. Descriptive and inferential statistical analysis was carried out on the quantitative data and the qualitative data was subjected to deductive thematic analysis.

RESULTS

Family members reported a view of normality in relation to CCC, also verified by the Child's Daily Life scale. However, they indicate the repercussions of the chronic condition on the family, and that they devote more attention and time to meeting the child's care needs, which was also verified in the View of the Impact of the Condition and Management Effort scales.

CONCLUSION

Families have a positive view of the situation of caring for CCC at home, but point out some negative effects, such as the greater time spent caring for the child.

摘要

目的

根据家庭管理方式框架(FMSF),分析家庭成员对照顾慢性病患儿(CCC)情况的认知。

方法

一项混合方法、平行收敛性研究,以FMSF理论框架为指导,采用“情况定义”这一概念组件。53个CCC家庭参与其中。通过半结构化访谈、用于描述参与者特征的问卷以及家庭管理测量量表收集数据。对定量数据进行描述性和推断性统计分析,对定性数据进行演绎主题分析。

结果

家庭成员报告了对CCC的正常看法,儿童日常生活量表也证实了这一点。然而,他们指出慢性病对家庭的影响,以及他们投入更多的注意力和时间来满足孩子的护理需求,这在病情影响和管理努力量表中也得到了证实。

结论

家庭对在家照顾CCC的情况持积极看法,但指出了一些负面影响,比如照顾孩子花费的时间更多。

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