Alshaigi Kahlid, Albraheem Reema, Alsaleem Khalid, Zakaria Moneer, Jobeir Aman, Aldhalaan Hesham
King Faisal Specialist Hospital & Research Centre (KFSH & RC), Saudi Arabia.
Int J Pediatr Adolesc Med. 2020 Sep;7(3):140-146. doi: 10.1016/j.ijpam.2019.06.003. Epub 2019 Jun 17.
Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others.
To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization.
An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was value < .05.
The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers ( < .05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization ( > .05).
Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.
被诊断患有自闭症谱系障碍(ASD)的儿童存在社交和认知障碍。对父母而言,这些行为可能导致羞辱、社会排斥和孤立。污名化是一个不仅可能影响高功能自闭症个体,还可能延伸至其家庭的问题。事实上,研究表明残疾儿童(包括ASD)的父母通常会经历他人的污名化反应。
确定沙特阿拉伯利雅得自闭症谱系障碍儿童家长的自我污名化和实际遭遇污名化的发生率,并识别可能的风险因素和污名化原因。
一项观察性横断面研究,涉及沙特阿拉伯利雅得自闭症谱系障碍儿童的家长。约163名参与者来自利雅得法赫德国王专科医院及研究中心(KFSH & RC)的自闭症研究中心(CFAR)。用于数据收集的主要材料是研究者编制的一份五点量表问卷。该问卷包含与参与者的人口统计学数据、自闭症儿童、家庭生活、资源以及作为家长的社会经历相关的封闭式问题。使用社会科学统计软件包(SPSS)22版对收集到的数据进行描述性统计和适当的统计分析。显著性水平为p值<0.05。
这项研究的结果表明,55名(33.7%)家长在回答与感知污名相关的问题时得分超过3分;其中82名(50.3%)是父亲。另一方面,108名(66.3%)家长作为自闭症儿童的家长并未感到受到污名化。42名(25.8%)家长在回答与实际遭遇污名相关的问题时得分超过3分,而121名(74.2%)家长作为自闭症儿童的家长并未面临实际的污名化。母亲(占75%,41名)比父亲更倾向于感到自我污名化和实际遭遇污名化(p<0.05)。此外对于感知污名或实际遭遇污名得分超过3分的家长,自闭症儿童的性别、血缘关系、ASD的严重程度以及家庭月收入并无显著差异(p>0.05)。
在沙特阿拉伯利雅得参与研究的自闭症谱系障碍儿童家长中,33.7%的家长经历过污名化,且母亲比父亲更易感到自我污名化和实际遭遇污名化。沙特阿拉伯民众的公众意识有所提高,因此该国父母遭受的负面污名化有所减少。较高水平的感知污名表明需要对家庭进行心理干预,以帮助应对这种新情况。较高水平的实际遭遇污名表明需要保障自闭症患者的权利并提高社会意识。建议在利雅得的不同中心以及沙特阿拉伯的其他地区开展进一步研究,以调查自闭症儿童家长中污名化的发生率。