Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review

Musetti, Alessandro; Manari, Tommaso; Dioni, Barbara; Raffin, Cinzia; Bravo, Giulia; Mariani, Rachele; Esposito, Gianluca; Dimitriou, Dagmara; Plazzi, Giuseppe; Franceschini, Christian; Corsano, Paola

doi:10.3390/jpm11090894

Cited by 42 publications

(30 citation statements)

References 71 publications

(128 reference statements)

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“…Autism spectrum disorder (ASD) is described as a group of neurodevelopmental diseases, the symptoms of which begin during early childhood and typically last throughout a person’s life. The causes and risk factors that make children more likely to develop ASD are manifold, including environmental, biological, and genetic influences [ 1 ]. Fragile X Syndrome (FXS) is the most frequent form of inherited X-linked pathology and the first monogenic cause of ASD.…”

Section: Introductionmentioning

confidence: 99%

Brain Cholesterol Biosynthetic Pathway Is Altered in a Preclinical Model of Fragile X Syndrome

Parente

Tonini

Buzzelli

et al. 2022

IJMS

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Fragile X Syndrome (FXS) is the most frequent form of inherited X-linked pathology, associated with an intellectual and developmental disability, and currently considered the first monogenic cause of autism spectrum disorder (ASD). Low levels of total cholesterol reported in the serum of FXS patients, and evidence that FMRP targets a subset of mRNAs encoding proteins of lipid synthesis and transport suggests that the cholesterol metabolism impairments could be involved in FXS. Thus, the aim of the presented work was to investigate the modulations of the cholesterol biosynthetic pathway and its end-products in a recently developed Fmr1-Δexon 8 rat model of FXS. Here, we show that this experimental model mimics what is found in FXS patients, exhibiting a lower serum cholesterol content, accompanied by a reduction in food intake and body weight compared to WT animals. Moreover, alterations of proteins committed to cholesterol synthesis and uptake have been observed in the amygdala, prefrontal cortex and nucleus accumbens. Interestingly, the end-products show a brain region-dependent modulation in Fmr1-Δexon 8 rats. Overall, our results demonstrate that the cholesterol biosynthetic pathway is altered in some brain regions of this preclinical model of FXS. This finding has relevance for future studies to delve deeper into the involvement of this metabolic process in FXS, and thus its possible role as a therapeutic target.

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Section: Introductionmentioning

confidence: 99%

Brain Cholesterol Biosynthetic Pathway Is Altered in a Preclinical Model of Fragile X Syndrome

Parente

Tonini

Buzzelli

et al. 2022

IJMS

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“…This may prompt them to re-examine whether they are sufficiently effective in their parental role. Additionally, the inability to balance between different obligations can result in feelings of guilt and mourning of the lost opportunities, demotivation for daily activities, low satisfaction and feeling of vitality, a negative self-perception and low self-esteem, as well as depression and reduced quality of life [ 5 , 6 , 7 , 8 ]. Even though most families adapt to the situation over time and find their own routine, it has been confirmed that parental perception of the quality of life depends on the severity of the illness and the extent of disability of the child [ 9 , 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…Developmental difficulties such as Down syndrome (DS), autistic spectrum disorders (ASD) and cerebral palsy (CP) are among the most common chronic conditions in childhood [ 11 ]. It was shown that parents of children with ASD have higher risk for experiencing chronic psychological stress, and thus impaired QOL, in comparison to parents of children with typical development (TD) and without chronic diseases [ 7 , 12 , 13 ], and compared to parents of children with Down syndrome [ 14 ]. A systematic review showed that parents of children with infantile cerebral palsy had lower QOL, along with higher levels of stress and depression, compared to the parents of TD children [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

Family and Individual Quality of Life in Parents of Children with Developmental Disorders and Diabetes Type 1

Ljubičić

Delin

Kolčić

2022

JCM

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Background: This cross-sectional study assessed both family and individual quality of life (QOL), and their association with self-esteem, optimism, chronic psychological stress, anxiety, and depression in parents of children with chronic conditions. Methods: Parents of children with Down syndrome (DS), autistic spectrum disorder (ASD), cerebral palsy (CP), diabetes mellitus type 1 (DMT1), and parents of children without chronic diseases with typical development (TD) were included. Multivariate linear regression analysis was used to assess parental characteristics associated with the domains of individual and family QOL. Results: Compared to the parents of TD children, parents of children with ASD and DS were more likely to report reduced family QOL in all domains, while parents of children with DMT1 had lower parental perception. Self-esteem was positively associated with all domains of individual QOL, while optimism was associated with the overall individual QOL perception and health. Higher stress perception was negatively associated with most of the domains of individual and family QOL. Conclusions: This study confirmed that parents of children with chronic conditions are more likely to have lower perception of both individual and family QOL, which were associated with self-esteem, chronic stress, anxiety, and depression. Interventions should focus not only on the child with a chronic condition but on parents too.

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“…7 Correspondingly, given that it is recognized that parents and families are essential to the well-being of children with ASD, researchers, policymakers, and service providers need to recognize the importance of supporting them and allowing for their involvement in the intervention for their children. This may be one way to improve parents’ QoL, 15 especially in Malaysia where currently there is limited support from the public and private sectors in providing more suitable centers and facilities to assist them in their difficult situation. 9 …”

Section: Introductionmentioning

confidence: 99%

An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)

Salleh¹,

Li²,

Jayanath³

et al. 2022

JMDH

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Purpose Children diagnosed with ASD usually have impaired social functions, exhibit repetitive, stereotyped and self-stimulatory behaviors, which make them prone to be stigmatized by the public. However, stigma not only affects those with stigmatization characteristics such as children with ASD but also tends to include other people related to them including parents. This is called affiliate stigma. However, affiliate stigma is unlikely to occur if public awareness is high. Considering that awareness of ASD is still comparatively low in this region and that, as a review of the literature showed, there have been limited studies on stigma and ASD conducted in South-East Asia, particularly in Malaysia, this study is of great significance, especially in the context of the East and other developing countries. The aim of this study was to explore parents’ experiences of caring and perceptions of affiliate stigma, resilience and quality of life (QoL) when caring for a child with ASD. Methods This paper is part of the sequential explanatory mixed-methods study in which, after a cross-sectional study of 144 parents, a qualitative approach was used to explore parents’ experiences of caring and their perceptions of affiliate stigma, resilience, and QoL. Participants were recruited when they were accompanying their children to therapy at two tertiary public hospitals in one of the north-eastern states of Malaysia. Eleven parents of children with ASD aged 2–12 years participated. Qualitative data analysis followed Braun and Clarke’s methodology of thematic analysis. Results Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience. Conclusion This is the first Southeast Asian study on parent-perceived affiliate stigma, resilience, and QoL in the context of ASD. These findings can inform healthcare personnel and policymakers into day-to-day parenting realities and therefore an effort to coordinate support services across all disciplines could be made to improve outcomes for both parents and children.

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Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review

Cited by 42 publications

References 71 publications

Brain Cholesterol Biosynthetic Pathway Is Altered in a Preclinical Model of Fragile X Syndrome

Brain Cholesterol Biosynthetic Pathway Is Altered in a Preclinical Model of Fragile X Syndrome

Family and Individual Quality of Life in Parents of Children with Developmental Disorders and Diabetes Type 1

An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)

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