International Journal of Inclusive Education ( IF 2.863 ) Pub Date : 2021-02-22 , DOI: 10.1080/13603116.2021.1888323 E. A. Adama 1 , D. Arabiat 1, 2 , M. J. Foster 1, 3 , E. Afrifa-Yamoah 4 , K. Runions 5 , R. Vithiatharan 5 , A. Lin 5
ABSTRACT
Living with a long-term medical condition is associated with heightened risk for mental health and psychosocial difficulties, but further research is required on this risk for children and adolescents with a rare disease in the educational setting. The aim of this study is to describe parents’ perceptions of the psychosocial impact of rare diseases on their school-aged children in Western Australia. A cross-sectional survey of 41 parents of school-aged children and adolescents diagnosed with a rare disease completed an online questionnaire. Questions related to their perceptions of health-related stigma, bullying, social competencies and mental health difficulties faced by their child. Results showed that stigmatisation was experienced by 75.6% of participants, and almost half (46.4%) reported their child was bullied. In this sample, parents reported high sensory (vision and hearing) abilities, but low to moderate self-care competence in relation to social activities and peer relations. Almost half of the respondents (43.9%) reported mental health difficulties among their children. Children and adolescents with a rare disease have unique psychological and social issues. These findings highlight the need for greater efforts to meet the diverse psychosocial, physical and emotional needs of children diagnosed with a rare disease who attend mainstream schools in Western Australia.
中文翻译:
罕见疾病对西澳大利亚主流学校儿童和青少年的心理社会影响
摘要
长期患有疾病会增加心理健康和社会心理困难的风险,但需要进一步研究教育环境中患有罕见疾病的儿童和青少年的这种风险。本研究的目的是描述西澳大利亚家长对罕见疾病对其学龄儿童心理社会影响的看法。对 41 名被诊断患有罕见疾病的学龄儿童和青少年家长进行的横断面调查完成了在线调查问卷。问题涉及他们对孩子面临的与健康相关的耻辱、欺凌、社交能力和心理健康困难的看法。结果显示,75.6%的参与者经历过耻辱,近一半(46.4%)的人报告说他们的孩子受到欺凌。在此示例中,父母报告称,他们的感觉(视觉和听觉)能力较高,但在社交活动和同伴关系方面的自我照顾能力较低至中等。近一半的受访者(43.9%)表示他们的孩子存在心理健康问题。患有罕见疾病的儿童和青少年有独特的心理和社会问题。这些发现强调需要做出更大的努力来满足在西澳大利亚主流学校就读的被诊断患有罕见疾病的儿童的多样化心理、身体和情感需求。患有罕见疾病的儿童和青少年有独特的心理和社会问题。这些发现强调需要做出更大的努力来满足在西澳大利亚主流学校就读的被诊断患有罕见疾病的儿童的多样化心理、身体和情感需求。患有罕见疾病的儿童和青少年有独特的心理和社会问题。这些发现强调需要做出更大的努力来满足在西澳大利亚主流学校就读的被诊断患有罕见疾病的儿童的多样化心理、身体和情感需求。