Dantas Kaliny Oliveira, Neves Robson da Fonseca, Ribeiro Kátia Suely Queiroz Silva, Brito Geraldo Eduardo Guedes de, Batista Marcia do Carmelo
Universidade Federal da Paraíba, João Pessoa, Brasil.
Cad Saude Publica. 2019 Jul 4;35(6):e00157918. doi: 10.1590/0102-311X00157918.
Multiple disabilities in children, present in various syndromes, involve physical, economic, and social problems and affect the parents of these children and their families. The attempt to learn more about this problem from a qualitative perspective gave rise to the current study's objective, namely to identify and summarize the scientific literature on the repercussions on the family from the birth and care of a child with multiple disabilities. This is a qualitative meta-synthesis of data from Scopus, PsycInfo, and SciELO, using the following descriptors: qualitative; children with disabilities; parent-child relations; family relations; and caregivers. The data were analyzed in three stages according to the method proposed by Noblit & Hare: extraction of first-order concepts; production of second-order concepts; and interpretative synthesis. After the search and eligibility process, eight studies were included, from which emerged six second-order concepts: social restriction; strain on family relations; feelings of affliction; financial instability; changes in the family dynamics; and stress to health and wellbeing. Three syntheses were developed, based on these concepts: disability and ideal parenthood; burden of care; and family redefinitions and adaptations. The studies showed that parents and families experience difficulties resulting from social representations of multiple disabilities and the burden of care (health problems, limitations to other activities, increased financial costs, and changes in the family's routine). They also indicate that these elements invade and can interfere in family and social relations.
患有多种残疾的儿童存在于各种综合征中,涉及身体、经济和社会问题,并影响这些儿童的父母及其家庭。从定性的角度试图更多地了解这个问题,引发了当前研究的目标,即识别和总结关于患有多种残疾儿童的出生和照料对家庭产生的影响的科学文献。这是一项对来自Scopus、PsycInfo和SciELO的数据进行的定性元综合研究,使用了以下描述词:定性;残疾儿童;亲子关系;家庭关系;以及照料者。根据诺布利特和黑尔提出的方法,数据分三个阶段进行分析:一阶概念的提取;二阶概念的生成;以及解释性综合。在检索和筛选过程之后,纳入了八项研究,从中出现了六个二阶概念:社会限制;家庭关系紧张;痛苦感;经济不稳定;家庭动态变化;以及对健康和幸福的压力。基于这些概念形成了三项综合分析:残疾与理想父母身份;照料负担;以及家庭重新定义与适应。研究表明,父母和家庭因多种残疾的社会表象以及照料负担(健康问题、对其他活动的限制、经济成本增加以及家庭日常生活的变化)而经历困难。研究还表明,这些因素会侵入并可能干扰家庭和社会关系。