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成年智障子女父母的生活质量和关注点:定性研究。

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study.

机构信息

Department of Health Psychology, University of Alicante, 03690 Alicante, Spain.

Mind, Brain and Behavior Research Center (CIMCYC), University of Granada, 18071 Granada, Spain.

出版信息

Int J Environ Res Public Health. 2020 Nov 23;17(22):8690. doi: 10.3390/ijerph17228690.

Abstract

Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents' quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Several dimensions of the parents' quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

摘要

先前的研究已经证实,养育被诊断出智力障碍(ID)的孩子会在多个方面对父母的生活质量产生负面影响。然而,较少有研究评估在初始诊断多年后对其的影响。本研究的目的是对患有 ID 的成年子女的母亲和父亲的当前生活质量和关注点进行深入分析,并以诊断时为参考。使用半结构化访谈格式评估了 16 名成年 ID 子女的父母。采用 ATLAS.ti 软件进行了主题定性分析。结果表明,父母的情感和身体健康以及人际关系都有所下降。此外,研究中考虑的时间内发生的多次生活变化以及日常担忧,阻碍了他们生活质量的改善。在孩子被诊断出 ID 多年后,父母生活质量的几个方面受到了影响。这些方面包括身体健康和心理健康不佳、经济困难、缺乏社会和家庭支持以及缺乏自我照顾的时间。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dd37/7709017/27a9fed20bdd/ijerph-17-08690-g001.jpg

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