脑瘫患儿的非专业照护者应对疾病不确定性的方式。
Informal caregivers of children with cerebral palsy ways of coping with the uncertainty of illness.
机构信息
Universidade de Pernambuco, Departamento de Enfermagem, Petrolina, PE, Brazil.
Universidade Estadual da Paraíba, Departamento de Enfermagem, Campina Grande, PA, Brazil.
出版信息
Rev Esc Enferm USP. 2023 Dec 15;57:e20230115. doi: 10.1590/1980-220X-REEUSP-2023-0115en. eCollection 2023.
OBJECTIVE
To unveil the process of collective construction of interventions for coping by informal caregivers of children with cerebral palsy using the Theory of Uncertainty in Illness.
METHOD
Qualitative action-research in a hybrid format with informal caregivers of children with cerebral palsy registered with the Raros group in Petrolina, Pernambuco. The research followed the planned intervention cycle, going through four phases. The analysis was carried out using the IRAMUTEQ software and content analysis.
RESULTS
Interventions were designed collectively, both virtually and in person, which resulted in improvements for informal caregivers in coping with the conditions associated with the disability, promotion of self-care, empowerment and the construction of a sense of belonging to the group. There were 12 participants, all of whom were mothers.
CONCLUSION
There was a facilitation of the process of coping with uncertainty in the disease on the part of the informal caregiver of children with cerebral palsy and it was evidenced that for this a prismatic perspective is necessary, which understands that the uncertainties are not only related to the conditions associated with cerebral palsy, but involve subjective aspects of the caregivers.
目的
利用疾病不确定性理论揭示脑瘫患儿非专业照护者应对干预措施的集体构建过程。
方法
在巴西伯南布哥州佩特罗利纳的 Raros 小组注册的脑瘫患儿非专业照护者参与的混合格式定性行动研究。研究遵循计划的干预周期，经历了四个阶段。使用 IRAMUTEQ 软件和内容分析进行分析。
结果
干预措施是在虚拟和面对面的情况下集体设计的，这为非专业照护者在应对与残疾相关的情况、促进自我护理、赋权和建立对群体归属感方面带来了改善。共有 12 名参与者，均为母亲。
结论
脑瘫患儿非专业照护者的疾病不确定性应对过程得到了促进，这表明需要一种棱镜视角，即理解不确定性不仅与脑瘫相关的情况有关，还涉及照护者的主观方面。
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