Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

Marsack, Christina N.; Perry, Tam E.

doi:10.1177/0164027517717044

Cited by 56 publications

(37 citation statements)

References 38 publications

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“…Extant evidence indicated that parental caregivers were more likely to report missing out on a normal way of life, experience social disconnectedness from relatives and friends, and feel unsupported by systems and society at large [ 28 , 29 ]. Time dependence is the perception of burden secondary to the time restrictions faced by parents because of the enduring and lifelong demands of caregiving for adult children [ 24 , 30 ]. Time devoted to caregiving can reduce opportunities to associate with friends, family members, and spouses, and can restrict parent caregivers’ potential for pursuing career, leisure, and community interaction opportunities [ 7 , 31 ].…”

Section: Introductionmentioning

confidence: 99%

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

2021

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Background Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

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Section: Introductionmentioning

confidence: 99%

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

2021

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“…Individuals with developmental disabilities, particularly autism spectrum disorder (ASD), often experience stigmatising public reactions (Ali et al, 2012;Broady et al, 2017;Eaton et al, 2016;Marsack et al, 2018;Tudose et al, 2017). This stigma can spill over to care providers who, by virtue associating with the stigmatised person, also experience negative reactions from the public (Abojabel et al, 2016;Koshorke et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

Caregivers’ characteristics and family constellation variables as predictors of affiliate stigma in caregivers of children with ASD

Lovell

Wetherell

2018

Psychiatry Research

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Affiliate stigma is one risk factor for psychological distress in familial caregivers. Few studies however, and none involving caregivers in the UK and US, have explored caregivers' characteristics and family constellation variables as risk and protective factors for affiliate stigma. This study aimed to fill this gap. Moreover, we believe this study is only second to explore these relationships among caregivers of children with autism spectrum disorder (ASD), a group particularly vulnerable to affiliate stigma. A sample of n=192 caregivers of children with ASD completed an online survey assessing caregivers' characteristics and family factors, and affiliate stigma. Non-partnered caregivers were more likely to report affiliate stigma, as were caregivers with shorter sleep duration. These findings might help clinicians and other health professionals identify caregivers at risk for affiliate stigma and concomitant psychological distress.

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“…For example, caregivers of individuals with ASD experience greater stigma than do caregivers of individuals with intellectual or physical disabilities [25]. Previous studies on self-stigma of families of individuals with ASD show that parents exhibit difficulties regarding self-stigma [26,27], repeated experiences of guilt and remorse [28], lack of knowledge of their surroundings [29], and social exclusion [30]. They may also hide the behavioral characteristics of their children [31] and how they deal with them [32].…”

Section: Self-stigma Of Familiesmentioning

confidence: 99%

“…Evidence from the structural aspects supporting the validity of the scale's construct [39] was confirmed for all factors. When compared with the self-stigma theory [18,19], the social misunderstanding construct has not been previously seen in the self-stigma theory, although, previous studies on self-stigma of families of individuals with ASD show that parents experience various social misunderstandings, including difficulties that are related to self-stigma [29,30]. Therefore, it was considered clinically important to include these sub-factors.…”

Section: Structural Validitymentioning

confidence: 99%

Development and Preliminary Validation of the Couples’ Stigma Scale to Assess Self-Stigma among the Partners of Persons with Autism Spectrum Disorder in Japan

Deguchi

Asakura

Omiya

2020

IJERPH

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Spouses of individuals with autism spectrum disorder (ASD) may struggle with self-stigma and may require attention and care; however, no scale exists to measure the stigma of spouses of persons with ASD. This study created and investigated the construct validity of the Couples Stigma Scale. This scale consists of 14 items and it was designed based on prior literature, interviews, and the self-stigma theory to assess the self-stigma experienced by spouses of people with ASD. A survey was conducted with spouses of persons with ASD who participated in a self-help group. Responses were obtained from 259 people, of which 253 women were included in the analysis. Exploratory factor analysis was performed separately with two independent groups, indicating a four-factor structure, to determine structural validity. The factor loadings of the items constituting the four factors were 0.39 or greater. Regarding external validity, the correlation coefficient between the Couples Stigma Scale and the World Health Organization Quality of Life (WHOQOL) score was −0.341 (p < 0.001), and the domain correlation coefficient was significant for all relevant WHOQOL domains. Our results suggest that the Japanese version of the Couples Stigma Scale is a valid instrument for assessing self-stigma in the spouses of persons with ASD.

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Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

Cited by 56 publications

References 38 publications

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

Caregivers’ characteristics and family constellation variables as predictors of affiliate stigma in caregivers of children with ASD

Development and Preliminary Validation of the Couples’ Stigma Scale to Assess Self-Stigma among the Partners of Persons with Autism Spectrum Disorder in Japan

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