There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities

Q4 Social Sciences

Journal of Intellectual Disability - Diagnosis and Treatment Pub Date : 2024-05-17 DOI:10.6000/2292-2598.2024.12.01.2

Sandisiwe Buthelezi, D. Mawila

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Abstract

Background: This study investigates the risk factors faced by parents of children with Severe Intellectual Disabilities. Methods: This study used a phenomenological research design within a qualitative research approach. Six parents of children diagnosed with Severe Intellectual Disability at Learners with Special Educational Needs schools were purposively selected to participate in this study. Data were collected through semi-structured interviews and a focus group. Thematic data analysis was used to analyze data. Results: The findings of this study revealed that parents of children with Severe Intellectual Disabilities faced risks that exacerbated negative outcomes. Psychological distress, social exclusion and isolation, financial burdens, and lack of access to formal education were risk factors that hindered their ability to care for and support their children. Conclusions: Based on these findings, the study concluded that parents need access to multidisciplinary teams of healthcare professionals to support them in combatting the risk factors they face.

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总有悲伤严重智障儿童家长面临的风险因素

研究背景本研究调查了严重智障儿童家长面临的风险因素。研究方法本研究采用定性研究方法中的现象学研究设计。有目的性地挑选了六名在特殊教育需要学生学校就读的被诊断为严重智障儿童的家长参与本研究。通过半结构化访谈和焦点小组收集数据。数据分析采用主题数据分析法。研究结果研究结果显示，严重智障儿童的家长面临着加剧负面结果的风险。心理困扰、社会排斥和孤立、经济负担以及缺乏接受正规教育的机会等风险因素阻碍了他们照顾和支持子女的能力。结论基于这些发现，研究得出结论，家长需要获得由多学科医护人员组成的团队的支持，以应对他们所面临的风险因素。

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来源期刊

Journal of Intellectual Disability - Diagnosis and Treatment Social Sciences-Health (social science)

CiteScore

1.00

自引率

0.00%

发文量

期刊介绍： The journal aims to describe the research work on Intellectual Disability Diagnosis and Treatment in children and adults. It covers not just the technical aspects of the procedures in prenatal, newborn and postnatal screening, but also the impact which the process of testing and treatment has on individuals, parents, families and public-health in general. The journal seeks to publish, but is a not restricted to, Genetic Intellectual Disability Syndromes, using a range of approaches from medicine, psychiatry, psychology, pharmacy, biology, epidemiology, bioinformatics, biopharmaceutical to association and population studies as well as sociological, ethical, philosophical, legal and quality control issues with the ultimate goal of advancing the knowledge on the diagnosis, prevention, and treatment of the Intellectual Disabilities. The journal publishes original research articles, review articles, case reports and short communications(Letter article).