Chu Shin Ying, Lee Jaehoon, Zamsyari Dini Sofea Binti, Gan Chun Hong, Woi Pui Juan, Chong Agnes Shu Sze, Garraffa Maria, Lin Ling-Yi
Centre for Healthy Ageing and Wellness (H-CARE), Faculty of Health Sciences, Speech Sciences Programme, Universiti Kebangsaan Malaysia, Selangor, Malaysia.
Department of Educational Psychology, Leadership, and Counseling, Texas Tech University, Lubbock, Texas, USA.
J Appl Res Intellect Disabil. 2025 Jul;38(4):e70099. doi: 10.1111/jar.70099.
To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS).
Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales.
Pearson correlations revealed that parents did not feel stigmatised for having a child with DS (M = 30.51, SD = 10.47) and reported a low caregiver burden (CBI Total M = 19.73, SD = 12.72). The relatively lower caregiving burden, challenges and future barriers in the DS group explained its lesser stigma, higher quality of life and greater happiness compared to the ASD and CP groups.
Healthcare professionals who provide rehabilitation services to children with DS need to be more aware of the needs of families and caregivers and educated about how to best support them.
探讨唐氏综合征（DS）患儿家长的关联污名、压力与感知生活质量之间的关系。
78名DS患儿的家长完成了关联污名量表（ASS）、照顾者负担量表（CBI）和与照顾相关的生活质量量表（CarerQol）。
Pearson相关性分析显示，家长们并未因孩子患有DS而感到受污名化（M = 30.51，标准差 = 10.47），且报告的照顾者负担较低（CBI总分M = 19.73，标准差 = 12.72）。与自闭症谱系障碍（ASD）和脑性瘫痪（CP）组相比，DS组相对较低的照顾负担、挑战和未来障碍解释了其污名化程度较低、生活质量较高和幸福感较强的原因。
为DS患儿提供康复服务的医疗专业人员需要更加了解家庭和照顾者的需求，并接受如何最好地支持他们的教育。
