Relationship between affiliate stigma, stress and perceived quality of life among parents of children with Down syndrome

Shin Ying Chu; Jaehoon Lee; Dini Sofea Binti Zamsyari; Chun Hong Gan; Pui Juan Woi; Agnes Shu Sze Chong; Maria Garraffa; Ling-Yi Lin

doi:10.1111/jar.70099

Relationship between affiliate stigma, stress and perceived quality of life among parents of children with Down syndrome

Shin Ying Chu
, Jaehoon Lee
, Dini Sofea Binti Zamsyari
, Chun Hong Gan
, Pui Juan Woi
, Agnes Shu Sze Chong
, Maria Garraffa
, Ling-Yi Lin

Research output: Contribution to journal › Article › peer-review

Abstract

Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS).

Method: 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.

Results: 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.

Conclusion: 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.

Original language	English
Article number	e70099
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	38
Issue number	4
DOIs	https://doi.org/10.1111/jar.70099
Publication status	Published - 25 Jul 2025

Keywords

Down syndrome
caregiver burden
quality of life
stigma
stress

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10.1111/jar.70099

Garraffa_AcceptedAccepted author manuscript, 612 KB

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title = "Relationship between affiliate stigma, stress and perceived quality of life among parents of children with Down syndrome",

abstract = "Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS). Method: 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. Results: 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. Conclusion: 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.",

keywords = "Down syndrome, caregiver burden, quality of life, stigma, stress",

author = "Chu, \{Shin Ying\} and Jaehoon Lee and \{Binti Zamsyari\}, \{Dini Sofea\} and Gan, \{Chun Hong\} and Woi, \{Pui Juan\} and Chong, \{Agnes Shu Sze\} and Maria Garraffa and Ling-Yi Lin",

note = "Data Availability Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request. Funding: This work was supported by British Council UK-Malaysia Going Global Partnerships (Grant No. NN2024-012 registered at UKM).",

year = "2025",

month = jul,

day = "25",

doi = "10.1111/jar.70099",

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T1 - Relationship between affiliate stigma, stress and perceived quality of life among parents of children with Down syndrome

AU - Chu, Shin Ying

AU - Lee, Jaehoon

AU - Binti Zamsyari, Dini Sofea

AU - Gan, Chun Hong

AU - Woi, Pui Juan

AU - Chong, Agnes Shu Sze

AU - Garraffa, Maria

AU - Lin, Ling-Yi

N1 - Data Availability Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request. Funding: This work was supported by British Council UK-Malaysia Going Global Partnerships (Grant No. NN2024-012 registered at UKM).

PY - 2025/7/25

Y1 - 2025/7/25

N2 - Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS). Method: 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. Results: 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. Conclusion: 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.

AB - Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS). Method: 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. Results: 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. Conclusion: 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.

KW - Down syndrome

KW - caregiver burden

KW - quality of life

KW - stigma

KW - stress

UR - https://www.scopus.com/pages/publications/105011876218

U2 - 10.1111/jar.70099

DO - 10.1111/jar.70099

M3 - Article

SN - 1360-2322

VL - 38

JO - Journal of Applied Research in Intellectual Disabilities

JF - Journal of Applied Research in Intellectual Disabilities

IS - 4

M1 - e70099

ER -

Relationship between affiliate stigma, stress and perceived quality of life among parents of children with Down syndrome

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Keywords

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