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Relationship between Affiliate Stigma, Stress and Perceived Quality of Life among Parents of Children with Down Syndrome

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Title: Relationship between Affiliate Stigma, Stress and Perceived Quality of Life among Parents of Children with Down Syndrome
Language: English
Authors: Shin Ying Chu (ORCID 0000-0002-3558-0477), Jaehoon Lee (ORCID 0000-0002-5040-843X), Dini Sofea Binti Zamsyari, Chun Hong Gan, Pui Juan Woi, Agnes Shu Sze Chong (ORCID 0000-0002-6410-4939), Maria Garraffa (ORCID 0000-0003-1767-424X), Ling-Yi Lin (ORCID 0000-0002-1438-0820)
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(4).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Attitudes toward Disabilities, Social Bias, Stress Variables, Quality of Life, Parents, Children, Down Syndrome, Rehabilitation Programs, Family Needs
DOI: 10.1111/jar.70099
ISSN: 1360-2322
1468-3148
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.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1481502
Database: ERIC
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  Value: <anid>AN0187526543;e0301jul.25;2025Aug28.05:02;v2.2.500</anid> <title id="AN0187526543-1">Relationship Between Affiliate Stigma, Stress and Perceived Quality of Life Among Parents of Children With Down Syndrome </title> <p>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.</p> <p>Keywords: caregiver burden; Down syndrome; quality of life; stigma; stress</p> <p></p> <ulist> <item> Rehabilitation programmes should include comprehensive family support systems that address both the children's needs and the parents' mental health and well‐being.</item> <p></p> <item> Time management training and resources should be integrated into rehabilitation services to alleviate parental stress.</item> <p></p> <item> Tailored intervention programmes should be developed to meet the specific needs of parents and children with different disabilities, enhancing the effectiveness of the support provided.</item> </ulist> <p>Summary</p> <hd id="AN0187526543-2">Introduction</hd> <p>The birth of a child with Down syndrome (DS) can have a profound impact on the family system, influencing social, emotional, cognitive and behavioural processes (Barnett et al. [<reflink idref="bib2" id="ref1">2</reflink>]; Hodapp [<reflink idref="bib25" id="ref2">25</reflink>]). Parents of children with DS often face significant stress and uncertainties regarding their child's health, frequent medical appointments and the additional responsibilities of caring for children with special needs (Hsiao and Van Riper [<reflink idref="bib27" id="ref3">27</reflink>]; Wahab and Monoto [<reflink idref="bib49" id="ref4">49</reflink>]). These challenges can disrupt family dynamics and careers, leading to family tensions (Esbensen et al. [<reflink idref="bib15" id="ref5">15</reflink>]). Additionally, parents in eastern and developing countries, including Malaysia, may encounter cultural stigmatisation and social embarrassment, which can further impact their quality of life (QOL) (AlAhmari et al. [<reflink idref="bib1" id="ref6">1</reflink>]). Compared to Western countries, particularly those that are developed and have a more established support system for children with special needs, stigmatisation and social embarrassment are generally higher in Eastern cultures (Kayama et al. [<reflink idref="bib29" id="ref7">29</reflink>]). This may be associated with Western culture being known for endorsing more objective and scientific beliefs about disabilities and mental health. In contrast, Eastern culture tends to attribute greater supernatural, moral and psychosocial causes of stigma (Birtel and Mitchell [<reflink idref="bib4" id="ref8">4</reflink>]; Kayama et al. [<reflink idref="bib29" id="ref9">29</reflink>]). These personal factors can lead to self‐stigmatisation and affiliate stigma (Li et al. [<reflink idref="bib31" id="ref10">31</reflink>]).</p> <p>According to Gau et al. ([<reflink idref="bib20" id="ref11">20</reflink>]), families of children with DS tend to experience higher stress levels than families of typically developing children. In comparison to parents of children with other neurodevelopmental disorders, such as autism spectrum disorder (ASD) and different types of intellectual disability, parents of children with DS experience significantly lower levels of parenting stress (Fucà et al. [<reflink idref="bib18" id="ref12">18</reflink>]). This could be due to several distinctive traits of children with DS, typically characterised as sociable, cheerful and affectionate (Wishart and Johnston [<reflink idref="bib53" id="ref13">53</reflink>]). This may encourage positive interactions and lead to better perceptions of children from their parents. Nevertheless, several factors linked to higher parenting stress in parents of children with DS have been identified. Some of the children with DS characteristics, which include age (Lanfranchi and Vianello [<reflink idref="bib30" id="ref14">30</reflink>]), low social desirability (Eisenhower et al. [<reflink idref="bib14" id="ref15">14</reflink>]) and behavioural issues (Mitchell et al. [<reflink idref="bib35" id="ref16">35</reflink>]) such as irritability and hyperactivity (Papaeliou et al. [<reflink idref="bib39" id="ref17">39</reflink>]) could contribute to the high level of stress amongst the parents.</p> <p>Parents of children with DS may face additional care requirements and social challenges that can impact their QOL (AlAhmari et al. [<reflink idref="bib1" id="ref18">1</reflink>]; Hatton and Emerson [<reflink idref="bib24" id="ref19">24</reflink>]). Previous studies have indicated a high prevalence of emotional exhaustion (Magenis et al. [<reflink idref="bib32" id="ref20">32</reflink>]) and reduced mental health amongst parents or caregivers of children with DS, causing them to require additional assistance to manage their children (Weijerman and de Winter [<reflink idref="bib52" id="ref21">52</reflink>]). The burdens that parents might face in society include social embarrassment, which could adversely affect QOL (AlAhmari et al. [<reflink idref="bib1" id="ref22">1</reflink>]). In addition, the severity of their child's condition could also influence QOL, because some children with DS may require additional care and medical attention over others.</p> <p>Although research has explored affiliate stigma, stress levels and QOL in parents of children with various disorders, few studies have focused specifically on parents of children with DS, particularly in Malaysia (Watanabe et al. [<reflink idref="bib51" id="ref23">51</reflink>]). A single study in Malaysia indicated that parents of children with DS generally reported good QOL; however, QOL was also relatively lower in families with more members and affected by parental worry towards the child with DS, highlighting the need for further exploration (Shuib et al. [<reflink idref="bib45" id="ref24">45</reflink>]). Understanding and addressing the burdens and social challenges faced by parents provide dual benefits: preventing caregiver burnout and health issues, and ensuring that their children receive high‐quality care services (Van Exel [<reflink idref="bib48" id="ref25">48</reflink>]). Therefore, this study aimed to examine the extent of affiliate stigma experienced by parents of children with DS and explore the interrelationships between affiliate stigma, parenting stress and QOL amongst parents of children with DS in Malaysia. The second objective was to evaluate the relationship between affiliate stigma, parenting stress and QOL amongst parents of children with DS in comparison to previously published data on parents of children with autism and cerebral palsy (CP). It was hypothesised that higher levels of stigma are associated with increased stress levels and decreased QOL. These findings will contribute to a better understanding of the affiliate stigma experienced by these parents and provide valuable insights for both parents and healthcare providers.</p> <hd id="AN0187526543-3">Materials and Methods</hd> <p></p> <hd id="AN0187526543-4">Procedure</hd> <p>Seventy‐eight parents, each with a child(ren) aged 2–18 years and diagnosed with DS, participated in this study. To be eligible for this study, participants were required to be parents of children with a confirmed diagnosis of DS, have the ability to read English, and reside in Malaysia. Parents of children with diagnoses other than DS were excluded from participation. The participants in this study were recruited from all 12 states and the two federal territories of Peninsular Malaysia, including Northern, East Coast, Central and Southern regions. The invitation to participate in the study was sent to the WhatsApp group of the Down Syndrome Association Malaysia (PSDM), a major non‐profit organisation that advocates for the welfare of individuals with DS and its affiliate members. The participants completed an online survey, and consent was obtained at the beginning of the survey. Data collection took place over 9 weeks from February to April 2023. The study protocol was approved by the Ethics Committee of Universiti Kebangsaan Malaysia (JEP‐2023‐028).</p> <hd id="AN0187526543-5">Instruments</hd> <p>The survey consisted of 60 questions divided into four sections: (a) demographic information, (b) Affiliate Stigma Scale (ASS), (c) Caregiver Burden Inventory (CBI) and (d) Care‐related Quality of Life (CarerQOL). The questions were presented in various formats, such as short answer, multiple‐choice and Likert scales, and were conveyed in English. It was expected that participants would complete the questionnaire within 20–30 min. The same survey was successfully conducted in previous studies involving parents of children with ASD (Chu et al. [<reflink idref="bib9" id="ref26">9</reflink>]).</p> <hd id="AN0187526543-6">Affiliate Stigma</hd> <p>The ASS is a measure of self‐stigma in individuals caring for relatives with mental illness or intellectual disability (Mak and Cheung [<reflink idref="bib33" id="ref27">33</reflink>]). This scale comprises 22 items categorised into three domains (subscales): Cognitive (7 items), Affective (7 items) and Behaviour (8 items). Each item is rated on a 4‐point Likert scale, ranging from 'strongly disagree' to 'strongly agree'. A higher total score indicates a higher level of stigma. The ASS has demonstrated strong psychometric properties, including high internal consistency (<emph>α</emph> = 0.85–0.94), good person separation reliability (coefficient = 0.88–0.99) and both predictive and concurrent validity (Chang et al. [<reflink idref="bib7" id="ref28">7</reflink>]; Mak and Cheung [<reflink idref="bib33" id="ref29">33</reflink>]).</p> <hd id="AN0187526543-7">CBI</hd> <p>The CBI is a 24‐item scale to assess the caregiver burden (Novak and Guest [<reflink idref="bib38" id="ref30">38</reflink>]). This inventory includes five domains (subscales): Time Dependency (5 items), Developmental Aspects (5 items), Physical Health (4 items), Emotional Health (5 items) and Social Relationships (5 items). Each item is rated on a 5‐point Likert scale, ranging from 'not at all disruptive' to 'very disruptive'. A higher total score represented an increased level of caregiving stress. Scores approaching or slightly exceeding 24 suggest a need for caregiver respite, whereas scores exceeding 36 indicate a risk of caregiver burnout. CBI has demonstrated high internal consistency across its five dimensions, with coefficient alpha values of 0.85, 0.85, 0.86, 0.73 and 0.77, reported for Time Dependency, Developmental Aspects, Physical Health, Emotional Health and Social Relationships respectively (Chou et al. [<reflink idref="bib8" id="ref31">8</reflink>]).</p> <hd id="AN0187526543-8">CarerQOL</hd> <p>The CarerQoL evaluates the QOL of informal caregivers of individuals with physical and mental health problems (Brouwer et al. [<reflink idref="bib5" id="ref32">5</reflink>]). It is divided into two parts: the 7‐item CarerQoL‐7D, offering a comprehensive portrayal of the caregiving situation, and the single‐item CarerQoL‐VAS, assesses well‐being. The CarerQoL‐7D items are rated on a 3‐point Likert scale ('no', 'some', 'a lot of'), and a higher total score indicates more favourable care situations. The CareQoL‐VAS item is rated on an 11‐point Likert scale ranging from 'completely unhappy' (0) to 'completely happy' (<reflink idref="bib10" id="ref33">10</reflink>). The CarerQoL has demonstrated promising validity and feasibility within a diverse sample of informal caregivers (McLoughlin et al. [<reflink idref="bib34" id="ref34">34</reflink>]).</p> <hd id="AN0187526543-9">Data Analysis</hd> <p>Descriptive statistics were used to summarise the demographic characteristics of the participants, as well as the distribution of their responses to the survey instruments. For the ASS or CarerQoL‐7D, both are interpreted as continuous measures, with higher scores indicating greater stigma or lower QOL respectively. For descriptive purposes, ASS scores were categorised into tertiles, following common practice. For the CBI, scores above 36 have been suggested as indicating a need for respite care (Novak and Guest [<reflink idref="bib38" id="ref35">38</reflink>]), and this threshold was used to identify high burden in our analysis.</p> <p>Pearson's correlations were computed to examine the relationships between affiliate stigma, stress and QOL. Furthermore, ordinary least squares (OLS) regression was conducted to assess the impact of affiliate stigma (Cognitive, Affective, Behaviour) on caregiving stress (Time‐Dependence, Developmental Aspects, Physical Health, Emotional Health, Social Relationships) and caregiver quality of life (CarerQoL‐7D, CarerQoL‐VAS), whilst controlling for key demographic factors, including the parents' relationship with the child (i.e., sex: mother or father), ethnicity, education and household income. Effect sizes were calculated for each effect in the models – partial <emph>η</emph><sups>2</sups>: small = 0.01, medium = 0.06, large = 0.14 (Cohen [<reflink idref="bib11" id="ref36">11</reflink>]).</p> <p>In a supplementary analysis, the participants (parents of children with DS) were compared to parents of children with autism (ASD) or CP obtained from previous research by Chu et al. ([<reflink idref="bib10" id="ref37">10</reflink>]). More specifically, multivariate analysis of covariance (MANCOVA) was conducted using the ASS total, CBI total, CarerQoL‐7D and CarerQoL‐VAS scores as the dependent variables. The type of parental group (DS, ASD or CP) served as the independent variable, whilst their relationship with the child was the covariate. If necessary, post hoc pairwise comparisons of marginal means were performed at the Bonferroni‐corrected alpha level.</p> <p>The assumptions required for multivariate tests were met. Normality was established through skewness scores ranging from 0.26 to 2.20 and through visual inspection of the variable distributions. Further, the analysis of plots of residuals and standardised residuals confirmed the linearity, homogeneity of variance and normality of the residuals. All analyses were performed using Statistical Analysis System (SAS) version 9.4.</p> <hd id="AN0187526543-10">Results</hd> <p></p> <hd id="AN0187526543-11">Sample Demographics</hd> <p>Table 1 presents the participants' demographic profiles. The majority of participants were mothers, accounting for 85.9% of the sample. Ethnicity‐wise, the study's ethnic distribution showed a higher number of Malay participants, constituting 87.2% of the respondents, followed by Chinese (6.4%), Indian (3.8%) and Bumiputera Sabah (2.6%). This distribution is in line with the Malaysian population composition, where Malays make up 61.7%, followed by Chinese (20.8%) and Indian (6.2%) (Central Intelligence Agency [<reflink idref="bib6" id="ref38">6</reflink>]; Department of Statistics Malaysia [<reflink idref="bib13" id="ref39">13</reflink>]). Thus, it is noteworthy that the study is more likely to reflect Malay religious and cultural values. Regarding education and income level, over half of the participants held a bachelor's (34.6%) and/or master's degree (25.6%), and nearly half fell into the M40 category (47.4%), followed by the B40 (38.5%) and T20 (14.1%) categories. The income categories reflect Malaysian monthly household disposable income levels: B40 (USD745), M40 (USD1698) and T20 (USD4207). This distribution suggests that the sample has a relatively higher income level than the general Malaysian population, where the B40 category constitutes the majority (Department of Statistics Malaysia [<reflink idref="bib13" id="ref40">13</reflink>]). Overall, the sample has relatively higher education and income than the general Malaysian population.</p> <p>1 TABLE Demographic profiles of study participants (N  = 78).</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Variable</th><th align="center">%</th></tr></thead><tbody valign="top"><tr><td align="left">Parent's relationship to the child (i.e., sex)</td><td align="center" /></tr><tr><td align="left">Mother</td><td align="center">85.9</td></tr><tr><td align="left">Father</td><td align="center">14.1</td></tr><tr><td align="left">Ethnicity</td><td align="center" /></tr><tr><td align="left">Malay</td><td align="center">87.2</td></tr><tr><td align="left">Chinese</td><td align="center">6.4</td></tr><tr><td align="left">Indian</td><td align="center">3.8</td></tr><tr><td align="left">Bumiputera Sabah</td><td align="center">2.6</td></tr><tr><td align="left">Education</td><td align="center" /></tr><tr><td align="left">SPM</td><td align="center">12.8</td></tr><tr><td align="left">STPM</td><td align="center">3.8</td></tr><tr><td align="left">Diploma</td><td align="center">21.8</td></tr><tr><td align="left">Degree</td><td align="center">34.6</td></tr><tr><td align="left">Master's</td><td align="center">25.6</td></tr><tr><td align="left">Doctoral</td><td align="center">1.3</td></tr><tr><td align="left">Monthly household income category</td><td align="center" /></tr><tr><td align="left">B40 (USD745)</td><td align="center">38.5</td></tr><tr><td align="left">M40 (USD1698)</td><td align="center">47.4</td></tr><tr><td align="left">T20 (USD4207)</td><td align="center">14.1</td></tr></tbody></table> </ephtml> </p> <p>1 Abbreviations: B40 = bottom 40%; M40 = middle 40%; SPM = <emph>Sijil Pelajaran Malaysia</emph> (Malaysian Certificate of Education) (SPM is a national examination taken by secondary school students in Malaysia); STPM = <emph>Sijil Tinggi Persekolahan Malaysia</emph> (Malaysian Higher School Certificate) (STPM is one of the pre‐university examinations in Malaysia); T20 = top 20%.</p> <hd id="AN0187526543-12">Parents' Affiliate Stigma, Caregiving Stress and QOL</hd> <p>Table 2 presents the scale and subscale scores of ASS, CBI and CarerQoL. The overall stigma score (<emph>M</emph> = 30.51, SD = 10.47) indicated that parents did not feel stigmatised for having children with DS.</p> <p>2 TABLE Descriptive statistics and correlations of stigma, stress and quality of life (N  = 78).</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Variable</th><th align="center">1</th><th align="center">2</th><th align="center">3</th><th align="center">4</th><th align="center">5</th><th align="center">6</th><th align="center">7</th><th align="center">8</th><th align="center">9</th><th align="center">10</th><th align="center">11</th><th align="center">12</th></tr></thead><tbody valign="top"><tr><td align="left">1. ASS Affective</td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">2. ASS Cognitive</td><td align="center">0.83<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">3. ASS Behavioural</td><td align="center">0.79<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.79<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">4. ASS Total.</td><td align="center">0.94<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.94<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.92<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">5. CBI Time Dependency</td><td align="center">0.20</td><td align="center">0.14</td><td align="center">0.10</td><td align="center">0.16</td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">6. CBI Developmental Aspects</td><td align="center">0.55<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.54<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">7. CBI Physical Health</td><td align="center">0.55<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.43<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.28<xref ref-type="fn" rid="tfn3" /></td><td align="center">0.45<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.40<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.64<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">8. CBI Emotional Health</td><td align="center">0.65<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.59<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.62<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.66<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.25<xref ref-type="fn" rid="tfn3" /></td><td align="center">0.66<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.37<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">9. CBI Social Relationships</td><td align="center">0.49<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.47<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.50<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.52<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.23<xref ref-type="fn" rid="tfn3" /></td><td align="center">0.54<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.35<xref ref-type="fn" rid="tfn4" /></td><td align="center">0.70<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">10. CBI Total</td><td align="center">0.61<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.52<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.58<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.70<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.88<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.75<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.73<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.69<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /><td align="center" /></tr><tr><td align="left">11. CarerQoL‐7D</td><td align="center">−0.51<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.51<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.47<xref ref-type="fn" rid="tfn4" /></td><td align="center">−0.53<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.20</td><td align="center">−0.45<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.42<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.45<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.33<xref ref-type="fn" rid="tfn4" /></td><td align="center">−0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td><td align="center" /></tr><tr><td align="left">12. CarerQoL‐VAS</td><td align="center">−0.48<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.43<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.38<xref ref-type="fn" rid="tfn4" /></td><td align="center">−0.46<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.22</td><td align="center">−0.43<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.47<xref ref-type="fn" rid="tfn5" /></td><td align="center">−0.31<xref ref-type="fn" rid="tfn4" /></td><td align="center">−0.31<xref ref-type="fn" rid="tfn4" /></td><td align="center">−0.46<xref ref-type="fn" rid="tfn5" /></td><td align="center">0.40<xref ref-type="fn" rid="tfn5" /></td><td align="center">1.00</td></tr><tr><td align="left">M</td><td align="center">10.46</td><td align="center">9.78</td><td align="center">10.27</td><td align="center">30.51</td><td align="center">11.29</td><td align="center">2.56</td><td align="center">3.05</td><td align="center">1.28</td><td align="center">1.54</td><td align="center">19.73</td><td align="center">10.36</td><td align="center">8.68</td></tr><tr><td align="left">SD</td><td align="center">4.02</td><td align="center">3.64</td><td align="center">3.57</td><td align="center">10.47</td><td align="center">4.48</td><td align="center">3.75</td><td align="center">3.39</td><td align="center">2.42</td><td align="center">2.85</td><td align="center">12.72</td><td align="center">2.09</td><td align="center">1.88</td></tr></tbody></table> </ephtml> </p> <ulist> <item>2 Abbreviations: ASS = Affiliate Stigma Scale; CBI = Caregiver Burden Inventory.</item> <item>3 * <emph>p</emph> < 0.05.</item> <item>4 ** <emph>p</emph> < 0.01.</item> <item>5 *** <emph>p</emph> < 0.001.</item> </ulist> <p>The parents also reported a low caregiver burden (CBI Total <emph>M</emph> = 19.73, SD = 12.72) (Novak and Guest [<reflink idref="bib38" id="ref41">38</reflink>]). Nevertheless, the domain scores suggested they might need time management assistance (<emph>M</emph> = 11.29, SD = 4.48).</p> <p>The CarerQOL scores indicated that the parents perceived their caregiving situation as moderately fair (7D <emph>M</emph> = 10.36, SD = 2.09), and they were generally happy (VAS <emph>M</emph> = 8.68, SD = 1.88). However, it was noteworthy that they reported experiencing some mental health issues, such as stress, fear, gloominess, depression and concern about the future.</p> <p>The subgroup analysis showed that parents' levels of stigma, stress and QOL did not differ significantly by their child's age (2–6, 7–12 or 13–18 years old), regardless of whether their relationship with the child was controlled for (Wilks' <emph>λ</emph> = 0.82, <emph>F</emph>(<reflink idref="bib8" id="ref42">8</reflink>, 142) = 1.81, <emph>p</emph> = 0.080) or not (Wilks' <emph>λ</emph> = 0.82, <emph>F</emph>(<reflink idref="bib8" id="ref43">8</reflink>, 144) = 1.87, <emph>p</emph> = 0.070).</p> <hd id="AN0187526543-13">Correlations Between Stigma, Stress and QOL</hd> <p>Table 2 presents the correlations between the scale and the subscale scores. Overall, there were strong correlations amongst parents' affiliate stigma, caregiving burden and QOL (<emph>r</emph> = −0.53–0.58). The relationship between the two subscales of CarerQoL, 7D and VAS, was moderately high (<emph>r</emph> = 0.40). All these correlations were statistically significant and in the expected direction. It was noteworthy that the correlations of Time Dependency with stigma and QOL were not significant.</p> <hd id="AN0187526543-14">Impact of Stigma on Stress and QOL</hd> <p>Table 3 presents the OLS regression results predicting the parents' stress and QOL based on their experienced stigma. After accounting for the parents' sex, ethnicity, education and household income, a heightened level of affective stigma was significantly related to increased caregiving stress stemming from physical and mental health challenges (both <emph>p</emph> < 0.01). The magnitude of these effects was moderately large (partial <emph>η</emph><sups>2</sups> = 0.10–0.14).</p> <p>3 TABLE OLS regression results (N  = 78).</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Parameter</th><th align="center">DV = Time Dependency</th><th align="center">DV = Development Aspects</th><th align="center">DV = Physical Health</th><th align="center">DV = Emotional Health</th><th align="center">DV = Social Relationships</th></tr><tr><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th></tr></thead><tbody valign="top"><tr><td align="left">Intercept</td><td align="center">6.93</td><td align="center">5.32</td><td align="center">0.198</td><td align="center" /><td align="center">−4.17</td><td align="center">3.83</td><td align="center">0.281</td><td align="center" /><td align="center">2.22</td><td align="center">3.13</td><td align="center">0.481</td><td align="center" /><td align="center">−3.65</td><td align="center">2.16</td><td align="center">0.096</td><td align="center" /><td align="center">−3.40</td><td align="center">2.86</td><td align="center">0.240</td><td align="center" /></tr><tr><td align="left">Sex</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.01</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td></tr><tr><td align="left">Female</td><td align="center">1.43</td><td align="center">1.64</td><td align="center">0.385</td><td align="center" /><td align="center">−0.54</td><td align="center">1.18</td><td align="center">0.651</td><td align="center" /><td align="center">0.42</td><td align="center">0.96</td><td align="center">0.664</td><td align="center" /><td align="center">−0.09</td><td align="center">0.67</td><td align="center">0.897</td><td align="center" /><td align="center">0.39</td><td align="center">0.88</td><td align="center">0.663</td><td align="center" /></tr><tr><td align="left">Male (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Ethnicity</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.04</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.01</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.05</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.04</td></tr><tr><td align="left">Bumiputera Sabah</td><td align="center">−5.47</td><td align="center">3.82</td><td align="center">0.158</td><td align="center" /><td align="center">−0.05</td><td align="center">2.75</td><td align="center">0.986</td><td align="center" /><td align="center">0.49</td><td align="center">2.24</td><td align="center">0.828</td><td align="center" /><td align="center">1.09</td><td align="center">1.55</td><td align="center">0.486</td><td align="center" /><td align="center">2.07</td><td align="center">2.06</td><td align="center">0.319</td><td align="center" /></tr><tr><td align="left">Chinese</td><td align="center">−1.16</td><td align="center">2.37</td><td align="center">0.627</td><td align="center" /><td align="center">−0.55</td><td align="center">1.71</td><td align="center">0.747</td><td align="center" /><td align="center">0.89</td><td align="center">1.39</td><td align="center">0.527</td><td align="center" /><td align="center">−0.50</td><td align="center">0.97</td><td align="center">0.607</td><td align="center" /><td align="center">−0.93</td><td align="center">1.28</td><td align="center">0.468</td><td align="center" /></tr><tr><td align="left">Indian</td><td align="center">0.84</td><td align="center">3.25</td><td align="center">0.798</td><td align="center" /><td align="center">0.71</td><td align="center">2.34</td><td align="center">0.763</td><td align="center" /><td align="center">1.26</td><td align="center">1.91</td><td align="center">0.511</td><td align="center" /><td align="center">−2.25</td><td align="center">1.32</td><td align="center">0.094</td><td align="center" /><td align="center">−1.90</td><td align="center">1.75</td><td align="center">0.283</td><td align="center" /></tr><tr><td align="left">Malay (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Education</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.04</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.05</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.03</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.07</td></tr><tr><td align="left">SPM</td><td align="center">1.31</td><td align="center">5.05</td><td align="center">0.796</td><td align="center" /><td align="center">0.47</td><td align="center">3.63</td><td align="center">0.898</td><td align="center" /><td align="center">−2.19</td><td align="center">2.96</td><td align="center">0.462</td><td align="center" /><td align="center">−0.13</td><td align="center">2.05</td><td align="center">0.951</td><td align="center" /><td align="center">1.36</td><td align="center">2.72</td><td align="center">0.618</td><td align="center" /></tr><tr><td align="left">STPM</td><td align="center">1.84</td><td align="center">5.60</td><td align="center">0.744</td><td align="center" /><td align="center">0.21</td><td align="center">4.03</td><td align="center">0.959</td><td align="center" /><td align="center">−3.99</td><td align="center">3.29</td><td align="center">0.229</td><td align="center" /><td align="center">−0.72</td><td align="center">2.27</td><td align="center">0.753</td><td align="center" /><td align="center">−1.22</td><td align="center">3.01</td><td align="center">0.686</td><td align="center" /></tr><tr><td align="left">Diploma</td><td align="center">1.65</td><td align="center">4.87</td><td align="center">0.735</td><td align="center" /><td align="center">1.44</td><td align="center">3.51</td><td align="center">0.683</td><td align="center" /><td align="center">−2.13</td><td align="center">2.86</td><td align="center">0.459</td><td align="center" /><td align="center">0.56</td><td align="center">1.98</td><td align="center">0.778</td><td align="center" /><td align="center">0.77</td><td align="center">2.62</td><td align="center">0.770</td><td align="center" /></tr><tr><td align="left">Degree</td><td align="center">2.01</td><td align="center">4.84</td><td align="center">0.679</td><td align="center" /><td align="center">0.93</td><td align="center">3.48</td><td align="center">0.790</td><td align="center" /><td align="center">−1.81</td><td align="center">2.84</td><td align="center">0.527</td><td align="center" /><td align="center">0.00</td><td align="center">1.97</td><td align="center">1.000</td><td align="center" /><td align="center">0.01</td><td align="center">2.60</td><td align="center">0.997</td><td align="center" /></tr><tr><td align="left">Master's</td><td align="center">1.69</td><td align="center">4.90</td><td align="center">0.731</td><td align="center" /><td align="center">2.32</td><td align="center">3.53</td><td align="center">0.513</td><td align="center" /><td align="center">−1.07</td><td align="center">2.88</td><td align="center">0.710</td><td align="center" /><td align="center">0.31</td><td align="center">1.99</td><td align="center">0.878</td><td align="center" /><td align="center">1.29</td><td align="center">2.63</td><td align="center">0.627</td><td align="center" /></tr><tr><td align="left">Doctoral (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Household income</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.01</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.07</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.01</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.02</td></tr><tr><td align="left">B40</td><td align="center">0.68</td><td align="center">2.14</td><td align="center">0.750</td><td align="center" /><td align="center">0.59</td><td align="center">1.54</td><td align="center">0.703</td><td align="center" /><td align="center">−1.12</td><td align="center">1.25</td><td align="center">0.374</td><td align="center" /><td align="center">0.30</td><td align="center">0.87</td><td align="center">0.735</td><td align="center" /><td align="center">−1.09</td><td align="center">1.15</td><td align="center">0.347</td><td align="center" /></tr><tr><td align="left">M40</td><td align="center">−0.30</td><td align="center">1.83</td><td align="center">0.869</td><td align="center" /><td align="center">0.29</td><td align="center">1.32</td><td align="center">0.828</td><td align="center" /><td align="center">−2.05</td><td align="center">1.07</td><td align="center">0.061</td><td align="center" /><td align="center">−0.18</td><td align="center">0.74</td><td align="center">0.808</td><td align="center" /><td align="center">−1.02</td><td align="center">0.98</td><td align="center">0.301</td><td align="center" /></tr><tr><td align="left">T20 (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Affiliated stigma</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Affective</td><td align="center">0.33</td><td align="center">0.30</td><td align="center">0.273</td><td align="center">0.02</td><td align="center">0.37</td><td align="center">0.22</td><td align="center">0.091</td><td align="center">0.04</td><td align="center">0.56</td><td align="center">0.18</td><td align="center">0.002</td><td align="center">0.14</td><td align="center">0.33</td><td align="center">0.12</td><td align="center">0.009</td><td align="center">0.10</td><td align="center">0.25</td><td align="center">0.16</td><td align="center">0.122</td><td align="center">0.04</td></tr><tr><td align="left">Cognitive</td><td align="center">−0.07</td><td align="center">0.29</td><td align="center">0.797</td><td align="center">0.00</td><td align="center">0.01</td><td align="center">0.21</td><td align="center">0.960</td><td align="center">0.00</td><td align="center">0.09</td><td align="center">0.17</td><td align="center">0.583</td><td align="center">0.00</td><td align="center">0.00</td><td align="center">0.12</td><td align="center">0.984</td><td align="center">0.00</td><td align="center">0.03</td><td align="center">0.16</td><td align="center">0.865</td><td align="center">0.00</td></tr><tr><td align="left">Behavioural</td><td align="center">−0.12</td><td align="center">0.28</td><td align="center">0.660</td><td align="center">0.00</td><td align="center">0.15</td><td align="center">0.20</td><td align="center">0.454</td><td align="center">0.01</td><td align="center">−0.31</td><td align="center">0.16</td><td align="center">0.061</td><td align="center">0.05</td><td align="center">0.14</td><td align="center">0.11</td><td align="center">0.223</td><td align="center">0.02</td><td align="center">0.20</td><td align="center">0.15</td><td align="center">0.191</td><td align="center">0.03</td></tr></tbody></table> </ephtml> </p> <p></p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Parameter</th><th align="center">DV = CarerQoL‐7D</th><th align="center">DV = CarerQoL‐VAS</th></tr><tr><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th><th align="center"><italic>b</italic></th><th align="center">SE</th><th align="center"><italic>p</italic></th><th align="center">ES</th></tr></thead><tbody valign="top"><tr><td align="left">Intercept</td><td align="center">14.91</td><td align="center">2.04</td><td align="center">0.000</td><td align="center" /><td align="center">11.57</td><td align="center">1.88</td><td align="center">0.001</td><td align="center" /></tr><tr><td align="left">Sex</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center">0.00</td></tr><tr><td align="left">Female</td><td align="center">0.57</td><td align="center">0.63</td><td align="center">0.369</td><td align="center">0.01</td><td align="center">−0.30</td><td align="center">0.58</td><td align="center">0.612</td><td align="center" /></tr><tr><td align="left">Male (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Ethnicity</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.04</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.07</td></tr><tr><td align="left">Bumiputera Sabah</td><td align="center">−0.99</td><td align="center">1.47</td><td align="center">0.500</td><td align="center" /><td align="center">0.40</td><td align="center">1.35</td><td align="center">0.769</td><td align="center" /></tr><tr><td align="left">Chinese</td><td align="center">0.10</td><td align="center">0.91</td><td align="center">0.914</td><td align="center" /><td align="center">−1.08</td><td align="center">0.84</td><td align="center">0.203</td><td align="center" /></tr><tr><td align="left">Indian</td><td align="center">1.72</td><td align="center">1.25</td><td align="center">0.174</td><td align="center" /><td align="center">−2.31</td><td align="center">1.15</td><td align="center">0.049</td><td align="center" /></tr><tr><td align="left">Malay (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Education</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.03</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.08</td></tr><tr><td align="left">SPM</td><td align="center">−0.60</td><td align="center">1.86</td><td align="center">0.746</td><td align="center" /><td align="center">−1.76</td><td align="center">1.79</td><td align="center">0.327</td><td align="center" /></tr><tr><td align="left">STPM</td><td align="center">−1.16</td><td align="center">1.87</td><td align="center">0.537</td><td align="center" /><td align="center">−2.12</td><td align="center">1.98</td><td align="center">0.289</td><td align="center" /></tr><tr><td align="left">Diploma</td><td align="center">−1.01</td><td align="center">1.88</td><td align="center">0.593</td><td align="center" /><td align="center">−0.94</td><td align="center">1.72</td><td align="center">0.589</td><td align="center" /></tr><tr><td align="left">Degree</td><td align="center">−0.71</td><td align="center">1.94</td><td align="center">0.716</td><td align="center" /><td align="center">−0.40</td><td align="center">1.71</td><td align="center">0.817</td><td align="center" /></tr><tr><td align="left">Master's</td><td align="center">−1.45</td><td align="center">2.15</td><td align="center">0.502</td><td align="center" /><td align="center">−0.43</td><td align="center">1.73</td><td align="center">0.803</td><td align="center" /></tr><tr><td align="left">Doctoral (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Household income</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.05</td><td align="center" /><td align="center" /><td align="center" /><td align="center">0.02</td></tr><tr><td align="left">B40</td><td align="center">−1.54</td><td align="center">0.82</td><td align="center">0.065</td><td align="center" /><td align="center">0.92</td><td align="center">0.76</td><td align="center">0.228</td><td align="center" /></tr><tr><td align="left">M40</td><td align="center">−1.09</td><td align="center">0.70</td><td align="center">0.126</td><td align="center" /><td align="center">0.61</td><td align="center">0.65</td><td align="center">0.346</td><td align="center" /></tr><tr><td align="left">T20 (ref.)</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Affiliated stigma</td><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /><td align="center" /></tr><tr><td align="left">Affective</td><td align="center">−0.22</td><td align="center">0.12</td><td align="center">0.065</td><td align="center">0.05</td><td align="center">−0.13</td><td align="center">0.11</td><td align="center">0.223</td><td align="center">0.02</td></tr><tr><td align="left">Cognitive</td><td align="center">−0.14</td><td align="center">0.11</td><td align="center">0.212</td><td align="center">0.02</td><td align="center">−0.07</td><td align="center">0.10</td><td align="center">0.517</td><td align="center">0.01</td></tr><tr><td align="left">Behavioural</td><td align="center">0.05</td><td align="center">0.11</td><td align="center">0.634</td><td align="center">0.00</td><td align="center">−0.03</td><td align="center">0.10</td><td align="center">0.736</td><td align="center">0.00</td></tr></tbody></table> </ephtml> </p> <ulist> <item>6 <emph>Note:</emph> The analysis involved regressing each dependent variable – five Caregiver Burden Inventory scores (Time‐Dependence, Developmental Aspects, Physical Health, Emotional Health, Social Relationships) and two CarerQOL scores (CarerQoL‐7D, CarerQoL‐VAS) – on the independent variables, which included three Affiliate Stigma Scale scores (Cognitive, Affective, Behaviour). Control variables such as the parents' relationship with the child, ethnicity, education level and household income were also included in the regression models.</item> <item>7 Abbreviations: DV = dependent variable; ES = effect size (partial <emph>η</emph><sups>2</sups>); SE = standard error.</item> </ulist> <hd id="AN0187526543-15">Comparisons With Parents of Children With Autism and CP</hd> <p>The multivariate test in MANCOVA was significant (Wilks' <emph>λ</emph> = 0.49, <emph>F</emph>(<reflink idref="bib8" id="ref44">8</reflink>, 438) = 23.29, <emph>p</emph> < 0.001), indicating significant differences amongst the three parental groups (DS, ASD, CP) across the four scores (ASS total, CBI total, CarerQoL‐7D, CarerQoL‐VAS). The univariate test results further showed significant group effects for each of these scores (all <emph>p</emph> < 0.001). As presented in Table 4, pairwise group comparisons revealed that the DS parents had significantly lower affiliated stigma and caregiving stress and significantly higher QOL and general happiness compared to both the ASD and CP parents (all corrected <emph>p</emph> < 0.01). However, the ASD and CP groups did not differ significantly on any of these variables (all corrected <emph>p</emph> > 0.05).</p> <p>4 TABLE Estimated group means and results of pairwise comparisons.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">DV</th><th align="center">DS</th><th align="center">ASD</th><th align="center">CP</th><th align="center"><italic>p</italic><xref ref-type="fn" rid="tfn10" /></th><th align="center"><italic>p</italic><xref ref-type="fn" rid="tfn11" /></th><th align="center"><italic>p</italic><xref ref-type="fn" rid="tfn12" /></th></tr></thead><tbody valign="top"><tr><td align="left">ASS Total</td><td align="center">30.08 (1.30)</td><td align="center">37.85 (1.04)</td><td align="center">38.37 (1.78)</td><td align="center">< 0.001</td><td align="center">< 0.001</td><td align="center">1.000</td></tr><tr><td align="left">CBI Total</td><td align="center">17.36 (1.93)</td><td align="center">27.65 (1.55)</td><td align="center">30.29 (2.64)</td><td align="center">< 0.001</td><td align="center">< 0.001</td><td align="center">1.000</td></tr><tr><td align="left">CarerQoL‐7D</td><td align="center">10.49 (0.31)</td><td align="center">8.72 (0.25)</td><td align="center">9.15 (0.43)</td><td align="center">< 0.001</td><td align="center">0.017</td><td align="center">1.000</td></tr><tr><td align="left">CarerQoL‐VAS</td><td align="center">8.84 (0.25)</td><td align="center">7.12 (0.20)</td><td align="center">7.57 (0.34)</td><td align="center">< 0.001</td><td align="center">0.004</td><td align="center">0.679</td></tr></tbody></table> </ephtml> </p> <ulist> <item>8 <emph>Note:</emph> Values are <emph>M</emph> (SE).</item> <item>9 Abbreviations: ASD = autism; ASS = Affiliate Stigma Scale; CBI = Caregiver Burden Inventory; CP = cerebral palsy; DS = Down syndrome; DV = dependent variable.</item> <item>10 a <emph>p</emph> value for comparing DS versus ASD.</item> <item>11 b <emph>p</emph> value for comparing DS versus CP.</item> <item>12 c <emph>p</emph> value for comparing ASD versus CP.</item> </ulist> <hd id="AN0187526543-16">Discussion</hd> <p>Our findings indicate that parents of children with DS experience minimal affiliate stigma, suggesting they do not feel stigmatised due to their children's condition. This implies that these parents have not internalised negative societal views or experience feelings of inferiority due to their children's condition, suggesting that the parents in our sample possess a resilient mindset and have managed to navigate the challenges of stigma effectively. As Quine and Pahl ([<reflink idref="bib42" id="ref45">42</reflink>]) pointed out, parents who are part of support groups have the opportunity to learn valuable information, resources and experiences regarding their child's condition. This is similar to the parents in our study, who were part of the PSDM. This exposure likely equips them with a comprehensive understanding of their children's conditions and empowers them to counteract societal misconceptions effectively. Furthermore, the communal nature of support groups fosters a sense of belonging and shared experiences (Barrera and Ainlay [<reflink idref="bib3" id="ref46">3</reflink>]). This platform allows parents to engage in dialogue, share challenges and derive mutual support. This peer connection facilitates the exchange of coping strategies, thereby strengthening resilience in the face of potentially stigmatising attitudes.</p> <p>Contrary to the outcomes observed by Gau et al. ([<reflink idref="bib20" id="ref47">20</reflink>]) and Fucà et al. ([<reflink idref="bib18" id="ref48">18</reflink>]), who suggested higher levels of parenting stress, our study indicated that parents experienced a low level of caregiver burden. Nevertheless, parents reported the highest level of stress within the 'Time Dependency' dimension, as reflected by the mean score of 11.29. This outcome implies that parents might benefit from assistance in managing their time effectively as they navigate the multifaceted demands of caring for children with DS. The intricate caregiving process, encompassing medical appointments, additional responsibilities and the unique needs of children with DS (Hatton and Emerson [<reflink idref="bib24" id="ref49">24</reflink>]), likely contributes to the time management challenges faced by parents. Research indicates that a strong support system significantly reduces caregiver burden and stress (Fairthorne et al. [<reflink idref="bib17" id="ref50">17</reflink>]). As underlined by Mugno et al. ([<reflink idref="bib36" id="ref51">36</reflink>]), family support plays a pivotal role in improving parents' mental health and reducing distress. Similarly, literature has shown that the lack of moral and practical support within the family system impacts the well‐being and socialisation of these families in Malaysia (Singh et al. [<reflink idref="bib46" id="ref52">46</reflink>]). Considering this, we recommend the establishment of a comprehensive support group that not only includes fellow parents but also integrates health professionals such as doctors, clinical psychologists, counsellors, audiologists and speech‐language therapists, which could offer not only emotional solace but also equip parents with effective strategies to navigate the challenges of caregiving, ultimately diminishing their burden and enhancing their overall QOL.</p> <p>QOL is essential to parents' well‐being and ability to cope with the demands of caring for children with DS. Our results indicated that parents reported a better caregiving situation. However, a closer look reveals a noteworthy difficulty for parents managing daily activities whilst providing care, suggesting potential challenges in balancing caregiving responsibilities with other life demands. This result aligns with previous research stating that parents often face juggling acts when caring for children with special needs (Hatton and Emerson [<reflink idref="bib24" id="ref53">24</reflink>]). Furthermore, a high level of overall happiness amongst parents of children with DS was noted, suggesting that parents find meaning and fulfilment in their caregiving role (Hoppes and Harris [<reflink idref="bib26" id="ref54">26</reflink>]), which might be influenced by their children's sociable, cheerful and affectionate traits (Wishart and Johnston [<reflink idref="bib53" id="ref55">53</reflink>]). It was also noted that around 44.9% of parents received good support from family, friends and others when carrying out the care task, which can be associated with improved caregiver health and QOL (Fairthorne et al. [<reflink idref="bib17" id="ref56">17</reflink>]). This shows that a robust support system may equip parents with the coping mechanisms and resilience needed to effectively navigate the challenges associated with caring for children with DS.</p> <p>The relationships observed in our results show an association between stigma, stress, QOL and overall happiness amongst parents of children with DS, which sheds light on the intricate dynamics that shape their caregiving experiences. The correlations revealed in our study highlight nuanced relationships and provide valuable insights into the multifaceted challenges faced by these parents. The findings from our study showed a positive correlation between stigma and stress that resonates with the existing literature (Gilmore [<reflink idref="bib22" id="ref57">22</reflink>]) and suggests that heightened levels of perceived stigma are associated with increased caregiving stress. Furthermore, our study found that parents who experienced higher levels of stigma tended to perceive lower QOL and overall happiness, emphasising the potential negative impact of stigma on well‐being. This finding is consistent with previous studies showing a significant association between stigma and QOL (Shin et al. [<reflink idref="bib44" id="ref58">44</reflink>]). Additionally, our study revealed negative associations between stress and both QOL and overall happiness, implying that higher stress levels are linked to reduced well‐being and happiness amongst parents of children with DS, consistent with the findings of previous studies (Daundasekara et al. [<reflink idref="bib12" id="ref59">12</reflink>]; Hamarat and Errol [<reflink idref="bib23" id="ref60">23</reflink>]; Schulz and Sherwood [<reflink idref="bib43" id="ref61">43</reflink>]). These findings collectively highlight the significance of addressing stigma‐related challenges in interventions and support services for parents of children with DS to promote their overall well‐being and coping abilities.</p> <p>The analysis of the results in this study indicates that the nature of the disabilities present in DS, ASD and CP has different impacts on factors such as affiliated stigma, caregiving stress, QOL and general happiness. It was found that DS parents experience significantly lower levels of affiliated stigma and caregiving stress, and higher levels of QOL and general happiness compared to ASD and CP parents. This suggests that the disabilities amongst DS, ASD and CP have different effects on the variables examined. Children with ASD have pervasive symptoms of social interaction and more challenging behaviours such as rigidity, tantrum‐throwing and self‐harming, all of which may require frequent and prolonged intervention sessions with varying professions within the allied health system (Johnson et al. [<reflink idref="bib28" id="ref62">28</reflink>]). Given the nature of its condition, the non‐linear process from identification to further familial support of children with ASD may add additional burden on the caregivers (Yi et al. [<reflink idref="bib54" id="ref63">54</reflink>]). Children with CP commonly display different levels of physical disabilities where extensive daily care is needed, especially in moderate and severe CP (Eyong et al. [<reflink idref="bib16" id="ref64">16</reflink>]). These features of disabilities in ASD and CP result in a higher caring burden that decreases the QOL and happiness of the parents (Paruk and Ramdhial [<reflink idref="bib40" id="ref65">40</reflink>]; Peter et al. [<reflink idref="bib41" id="ref66">41</reflink>]). Consistent with the findings of previous research, which demonstrated a correlation between high caregiving burdens and low QOL and more severe affiliate stigma in mental disorders (Wang et al. [<reflink idref="bib50" id="ref67">50</reflink>]), it can be inferred that the relatively lower caring burden experienced by individuals with DS is associated with significantly lower levels of affiliate stigma, as supported by this study. Whilst caregiving tasks that are more difficult tend to increase both affiliate stigma and self‐stigma, this is not the case for parents of children with DS. Additionally, compared to individuals with ASD and CP, parents of children with DS may face fewer caregiving challenges and future barriers. This study acknowledges that, whilst parents of children with DS may generally have a better overall QOL compared to those with ASD or CP, variations within the DS group should not be overlooked. Parents of children with DS may experience varying stress factors that evolve, influenced by changes in developmental stages, family dynamics and external circumstances. Providing timely and appropriate support – such as early intervention programmes, caregiver counselling and inclusive community services – remains a critical factor in enhancing the well‐being of parents of children with DS.</p> <p>The demographic analysis revealed that the majority of participants who completed the survey were mothers, similar to previous studies (Gashmard et al. [<reflink idref="bib19" id="ref68">19</reflink>]; Geok et al. [<reflink idref="bib21" id="ref69">21</reflink>]; Norizan and Shamsuddin [<reflink idref="bib37" id="ref70">37</reflink>]), highlighting their central role in caregiving for children with DS. A higher proportion of Malay participants may reflect the religious and cultural values prevalent in the Malaysian context. The high number of participants from Kelantan can be attributed to the existence of two PSDM affiliate groups in that region, potentially fostering a supportive environment for research participation. Additionally, a significant portion of the parents held a bachelor's or master's degree, indicating a relatively well‐educated sample. Considering the better caregiving situation and high overall happiness of parents, the findings from our study support those of a previous study, which demonstrated the association of a higher education level with a higher QOL of parents of children with DS (Geok et al. [<reflink idref="bib21" id="ref71">21</reflink>]). Intriguingly, the income distribution revealed that most participants fell within the low and middle levels of income classification. This contrasts with a previous study that associated the highest QOL scores with caregivers with the highest monthly income (Tekinarslan [<reflink idref="bib47" id="ref72">47</reflink>]). This inconsistency may be attributed to various contextual factors, suggesting that financial well‐being does not necessarily correlate linearly with QOL in the caregiving context. Whilst our study did not explore the direct relationships between demographic variables and caregiving experiences, the insights provided by the demographic section highlight the complexity of the factors influencing parents of children with DS in Malaysia. Future research could delve deeper into the influence of demographic variables on parental experiences, caregiving stress and QOL to gain a more comprehensive understanding of the unique challenges and strengths faced by parents of children with DS in Malaysia. Such insights would be valuable for tailoring support interventions and policies to meet the needs of this population better and enhance their overall well‐being.</p> <p>Although the three groups were comparable in parents' employment status (57.9%–65.5% employed; <emph>χ</emph><sups>2</sups>(<reflink idref="bib2" id="ref73">2</reflink>) = 1.45, <emph>p</emph> = 0.484), there were significant group differences in gender and education level. The ASD group included a higher proportion of male parents (<emph>χ</emph><sups>2</sups>(<reflink idref="bib2" id="ref74">2</reflink>) = 7.49, <emph>p</emph> = 0.024), whilst the DS group had a higher level of parental education (<emph>χ</emph><sups>2</sups>(<reflink idref="bib10" id="ref75">10</reflink>) = 22.30, <emph>p</emph> = 0.014). These dissimilarities may have influenced group differences in stigma, caregiver burden and QOL. Future research should aim to match or statistically control for these variables to better isolate the effects attributable to diagnostic group differences.</p> <p>One of the limitations of this study is that all participants were recruited solely from a support group, indicating that most of them possessed prior knowledge and assistance in caring for children with DS. This recruitment approach may have contributed to the relatively low levels of affiliate stigma and stress reported, as support group members often benefit from shared resources, emotional support and coping strategies. Consequently, these findings may not fully represent the experiences of parents who lack access to such support networks, potentially limiting the generalisability of the results to the broader population of Malaysian parents with DS children. The smaller sample size becomes another limitation of this study; hence the finding makes this study less generalisable to all Malaysian parents with DS children.</p> <p>Data from this study was collected online, so the researchers might have overlooked potential parents with limited internet and smartphone access. Despite this, this study demonstrates a significant correlation between affiliate stigma, stress and perceived QOL amongst parents with DS children.</p> <p>For future research, recruiting participants from diverse sources, such as hospitals, community‐based service centres and special education schools, would be beneficial for encompassing a wider audience with varying educational and income backgrounds. Future research is suggested to apply mixed methods in collecting data to gain a more comprehensive understanding of the relationship between the variables. Nonetheless, this study serves as the first to determine the levels of stigma, stress and QOL amongst parents with DS in Malaysia.</p> <hd id="AN0187526543-17">Conclusion</hd> <p>This study found that parents of children with DS are happy and content with their current caregiving status. These parents experienced low affiliate stigma and low caregiver burden. Although parents are effectively supported by helpful resources, one of the dimensions parents are most concerned about is 'Time Dependency'. Parents discovered they devote more time to their children, neglecting others, including themselves. As a result, it is critical to strengthen parents' resilience further and to learn appropriate coping methods for dealing with upcoming stress and stigma. This study highlights the need for tailored support interventions and policies in Malaysia, aligned with cultural and religious values, to address parents' challenges. Creating an inclusive environment, promoting awareness and strengthening social support networks can enhance parents' QOL. Future research should consider demographic variables to inform targeted interventions. Collaborative efforts with healthcare providers, support organisations and stakeholders will better support families affected by DS, fostering a more inclusive society and empowering parents and children with DS.</p> <hd id="AN0187526543-18">Author Contributions</hd> <p>S.Y.C., C.H.G., P.J.W. and L.‐Y.L. designed the study protocol. D.S.B.Z. collected the data. J.L. ran the data analysis. S.Y.C., P.J.W., A.S.S.C., M.G. and L.‐Y.L. drafted and edited the manuscript. All authors provided commentary and critical revisions to the draft and approved the final version of the manuscript for publication.</p> <hd id="AN0187526543-19">Ethics Statement</hd> <p>The Ethics Review Committee at the Universiti Kebangsaan Malaysia approved this study (approval: JEP‐2023‐028) on 10 February 2023.</p> <hd id="AN0187526543-20">Consent</hd> <p>Respondents gave written consent for review and signature before starting the survey.</p> <hd id="AN0187526543-21">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0187526543-22">Data Availability Statement</hd> <p>The data that support the findings of this study are available from the corresponding author upon reasonable request.</p> <ref id="AN0187526543-23"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref6" type="bt">1</bibl> <bibtext> Funding: This work was supported by British Council UK‐Malaysia Going Global Partnerships (Grant No. NN2024‐012 registered at UKM).</bibtext> </blist> </ref> <ref id="AN0187526543-24"> <title> References </title> <blist> <bibtext> AlAhmari, F. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Relationship between Affiliate Stigma, Stress and Perceived Quality of Life among Parents of Children with Down Syndrome
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Shin+Ying+Chu%22">Shin Ying Chu</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-3558-0477">0000-0002-3558-0477</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jaehoon+Lee%22">Jaehoon Lee</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-5040-843X">0000-0002-5040-843X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Dini+Sofea+Binti+Zamsyari%22">Dini Sofea Binti Zamsyari</searchLink><br /><searchLink fieldCode="AR" term="%22Chun+Hong+Gan%22">Chun Hong Gan</searchLink><br /><searchLink fieldCode="AR" term="%22Pui+Juan+Woi%22">Pui Juan Woi</searchLink><br /><searchLink fieldCode="AR" term="%22Agnes+Shu+Sze+Chong%22">Agnes Shu Sze Chong</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-6410-4939">0000-0002-6410-4939</externalLink>)<br /><searchLink fieldCode="AR" term="%22Maria+Garraffa%22">Maria Garraffa</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1767-424X">0000-0003-1767-424X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Ling-Yi+Lin%22">Ling-Yi Lin</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-1438-0820">0000-0002-1438-0820</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2025 38(4).
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Attitudes+toward+Disabilities%22">Attitudes toward Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Bias%22">Social Bias</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Rehabilitation+Programs%22">Rehabilitation Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Needs%22">Family Needs</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.70099
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.
– Name: AbstractInfo
  Label: Abstractor
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  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1481502
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1481502
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.70099
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
    Subjects:
      – SubjectFull: Attitudes toward Disabilities
        Type: general
      – SubjectFull: Social Bias
        Type: general
      – SubjectFull: Stress Variables
        Type: general
      – SubjectFull: Quality of Life
        Type: general
      – SubjectFull: Parents
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: Down Syndrome
        Type: general
      – SubjectFull: Rehabilitation Programs
        Type: general
      – SubjectFull: Family Needs
        Type: general
    Titles:
      – TitleFull: Relationship between Affiliate Stigma, Stress and Perceived Quality of Life among Parents of Children with Down Syndrome
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              Y: 2025
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