探索轻度智力残疾和癫痫患者的自主经历。
Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy.
作者信息
Haenen Alexandra, Frielink Noud, van Ool Jans, Tan Francis I Y, Embregts Petri J C M
机构信息
Tranzo, Tilburg School of Social and Behavioural Sciences, Tilburg University, Tilburg, The Netherlands.
Centre for Residential Epilepsy Care, Epilepsy Center Kempenhaeghe, Heeze, The Netherlands.
出版信息
J Appl Res Intellect Disabil. 2023 Nov;36(6):1326-1336. doi: 10.1111/jar.13151. Epub 2023 Aug 24.
BACKGROUND
While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear.
METHOD
We conducted semi-structured interviews with six adults (four men, two women) aged 30-61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis.
RESULTS
Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control.
CONCLUSIONS
In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.
背景
虽然癫痫会降低无智力障碍者的生活质量和自主决定权，但癫痫对有智力障碍者的自主决定权体验的影响仍不明确。
方法
我们对6名年龄在30至61岁之间、患有轻度智力障碍和耐药性癫痫的成年人（4名男性，2名女性）进行了半结构化访谈，以调查他们的自主决定权体验。采用解释现象学分析法对数据进行分析。
结果
确定了三个主要主题：（A）我是一个患有癫痫的有能力的人；（B）我的社会需求：被接纳以及人际关系的稳定；（C）掌控局面。
结论
在本研究中，癫痫对轻度智力障碍者自主决定权体验的影响超过了智力障碍的影响。身份认同的形成、与同龄人的友谊以及风险管理中的自主支持被确定为支持该群体的重要主题。
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