Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review

Čolić, Marija; Dababnah, Sarah; Garbarino, Nicole; Betz, Gail

doi:10.1080/20473869.2019.1688931

Cited by 20 publications

(14 citation statements)

References 53 publications

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“…Furthermore, the study found that parents of Black autistic children reported lower healthcare quality than those raising Black children with other developmental disabilities, which suggest that both race and diagnostic category impact quality. Similarly, a recent literature review of Black caregivers’ perceptions of autism services found parent–provider interactions to be challenging, with parents reporting various experiences of discrimination while seeking and accessing services for their children (Čolić et al, 2021). Taken together, the diagnosis and treatment processes are oftentimes longer and more burdensome for Black families, significantly widening the gaps in access to quality healthcare for autistic children (Magaña et al, 2012) and placing additional stress on those in the caregiving role (Gourdine et al, 2011; Williams et al, 2019).…”

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confidence: 99%

The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children

Lewis

Dababnah

Hollie

et al. 2022

Autism

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There is a paucity of studies that center on the lived experiences of Black families raising autistic children, and major gaps remain in our understanding of how parents of Black autistic children cope with stressors. Drawing from the Black family stress and coping model, this mixed-methods study explored coping strategies utilized by parents of Black autistic children. Twenty-two parents completed the Ways of Coping Questionnaire and participated in semi-structured interviews. Using grounded theory methods, we conducted data collection and analyses simultaneously until we did not identify new themes. Our quantitative and qualitative results were generally aligned. We found that parents used an array of coping strategies, at times combining different methods, to address complex stressors. Parents also expressed the need for more social support from providers, as well as a desire for inclusive spaces where they could engage with other parents whom they felt could better relate to the stressors they encountered. Study findings also suggest that kinship support, church involvement, and collective socialization are key protective factors in Black communities. Therefore, understanding the role culture plays in the use and effectiveness of coping strategies is essential to improving healthcare and other systems of care. Lay abstract Parents of Black autistic children use several strategies to cope with daily stressors. These strategies include seeking social support, self-care, and optimism. We asked parents about their experiences receiving treatment services for their autistic child and how they reduce parenting stress. Twenty-two parents completed a coping survey and participated in individual interviews. Few studies have explored the experiences of Black families raising autistic children, and it’s important for healthcare and other systems of care to understand the role culture, race, and ethnicity play in the use of coping strategies. In our study, the majority of parents relied on social support to relieve stress and identified partners, family, and community members, as their most useful sources of support. Connecting with other parents of autistic children, through support groups and social media, also helped parents relieve stress. Parents discussed using self-care activities (e.g. church, exercising, listening to music) to cope with stressors. Several parents described how prayer and meditation helped them reframe stressful situations and gain more patience and appreciation for “what’s important.” The findings of this work demonstrate the need for professionals to have ongoing and deeper conversations about the ways in which parents deal with stressors. In particular, clinicians should leverage the strengths of Black families and promote strategies that are culturally informed and engaged.

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confidence: 99%

The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children

Lewis

Dababnah

Hollie

et al. 2022

Autism

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“…Molnárová Letovancová and Slaná / KONTAKT 155 However, research in several countries around the world does not differ significantly when it comes to knowledge of the quality of life of parents who have children with a disability, depending on the type of the child's disability. Regardless of whether it concerns physical (Chalipat et al, 2016;Pousada et al, 2013;Shivers and Resor, 2020), intelectual (Čolić et al, 2019;Dizdarevic et al, 2020;Misura and Memisevic, 2017;Singh et al, 2016;Staunton et al, 2020) or combined disability (Kolcic, 2018;Leung and Li-Tsang, 2003), the results confirm the negative impact of children's disability on the quality of life of their parents. Variations in the quality of parents' life related to the type of disability are caused by the degree and extent of the child's disability (Dizdarevic et The above-mentioned studies jointly claim that the birth of a child with a disability is a stressful situation, both emotionally and in terms of the organisation of family life.…”

Section: Kontakt / Journal Of Nursing and Social Sciences Related To ...mentioning

confidence: 63%

Factors influencing the quality of life of parents raising a child with a disability

Letovancová¹,

Slaná²

2022

Kontakt

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The aim of the paper is to present the results of research aimed at determining the quality of life of parents of a child with a disability. Theoretical base: Quality of life, as a multidimensional and multidisciplinary concept, is an important research area in social work. In Slovakia, at least 2,500 children are born with a disability every year. This situation is a long-term burden for parents and the extended family that significantly affects their quality of life. Methods: To reach our goal, we have chosen a quantitative research strategy using a valid research tool, the standardized Family Quality of Life Scale. Results: Results of the research indicate a higher level of quality of life of the respondents than we expected. However, a reduced quality of life of the respondents was found in the dimensions of the scale "Parenting", "Family interaction" and "Emotional well-being". The research also confirmed that there are statistically significant differences in the quality of life of respondents depending on marital status, selfgoverning region, and education.

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“…Consistent with current research (Yorke et al, 2018), child behavior problems were associated with parental psychological distress in this sample of parents of children with autism residing in mainland China. Perhaps regardless of nationality or culture, behavior problems of children with autism are a stable and important correlate of parental wellbeing (Čolić et al, 2022). Replicating findings from some previous studies in Western cultural contexts (Higgins et al, 2023; Robinson & Weiss, 2020), we found no evidence of a moderating role for parental perceived support in the relationship between child behavior problems and parental wellbeing as would be predicted by a stress‐buffering model of social support across cultures.…”

Section: Discussionmentioning

confidence: 99%

“…Social support has been conceptualized and evidenced as one of the most important coping resources in improving wellbeing of parents of children with autism ( Čoli c et al, 2022;McCubbin & Patterson, 1983). Parental perceived support has been demonstrated as a predictor of parental wellbeing (Robinson & Weiss, 2020).…”

Section: Introductionmentioning

confidence: 99%

Child behavior problems and parental psychological distress in Chinese families of children with autism: The putative moderating role of parental social support and cultural values

Liu,

Thompson,

Gray

et al. 2024

Autism Research

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The wellbeing of parents of children with autism residing in mainland China remains understudied. We aimed to examine whether and how parental perceived social support, individualism, and collectivism acted together to moderate the relationships between child behavior problems and parental psychological distress in Chinese parents of children with autism. With convenience and snowball sampling, data on 268 primary caregiver parents of children with autism were collected from an online cross‐sectional survey. Linear regression analysis indicated that child behavior problems were significantly associated with increased psychological distress in Chinese parents of children with autism. There was no evidence to support the stress‐buffering model of social support in moderation analysis of the association between child behavior problems and parental psychological distress. Nonetheless, increased social support was associated with lower levels of parental psychological distress. Moderated moderation analyses did not support a role for individualism or collectivism as a moderator of the putative buffering role of social support. However, there was evidence that parental individualism was associated with increased parental psychological distress. Our findings highlight that child behavior problems are a robust correlate of parental psychological distress, and parental social support may act as a compensatory factor promoting less psychological distress rather than having a protective role. The role of social support and cultural values in the wellbeing of parents of children with autism in China requires additional exploration, including longitudinal research designs.

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Parental experiences raising children with autism spectrum disorder in Eastern Europe: a scoping review

Cited by 20 publications

References 53 publications

The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children

The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children

Factors influencing the quality of life of parents raising a child with a disability

Child behavior problems and parental psychological distress in Chinese families of children with autism: The putative moderating role of parental social support and cultural values

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