Impact of Fragile X Syndrome on Their Families

Iriarte-Redín, C.; Ferrer, Manuel Soriano; Hidalgo-Alés, Beatriz

doi:10.5093/psed2020a12

Cited by 4 publications

(4 citation statements)

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“…Components of time (e.g., for how long has the child or parent been experiencing quarantine) and specific behavior (e.g., to what degree has "typical" educational conditions, such as in-person schooling, changed during quarantine) must also be examined to understand short-term and long-term impacts of quarantine. Although it is impossible to know for sure right now whether negative impacts of quarantine will improve or worsen over time, many have argued that psychological and educational impacts will worsen over time (Brooks et al, 2020;Gómez-Becerra et al, 2020), especially for those who are most economically, educationally, or psychologically vulnerable (Miranda et al, 2005(Miranda et al, , 2008(Miranda et al, , 2013Soriano-Ferrer and Contreras, 2012;Bonifacci et al, 2019;Asbury et al, 2020;Colizzi et al, 2020;Marchetti et al, 2020a;Smith, 2020;Iriarte-Redín et al, 2021).…”

Section: Study Limitations Implications and Future Research Directionsmentioning

confidence: 99%

Psychoeducational Challenges in Spanish Children With Dyslexia and Their Parents’ Stress During the COVID-19 Pandemic

et al. 2021

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BackgroundResearch during 2020 has been rapidly attending to the impact of COVID-19 on various dimensions of wellbeing (e.g., physical, psychological, lifestyle and routines) on adults and children around the world. However, less attention has focused on the psychoeducational impact on children and their families. To our knowledge, no currently available studies have looked specifically at the impact of COVID-19 on students with dyslexia and their families. Research on this topic is needed to offer greater support for this population of students and their families.ObjectiveThe main objective of this paper is to examine the psychoeducational impact of the required COVID-19 quarantine in Spain among children with dyslexia and their families.MethodA sample of 32 children with dyslexia and their mothers participated in this study.MeasuresChildren and adolescents with dyslexia and their mother completed several measures before the required national quarantine in Spain and again during the quarantine. Children completed measures of depression, state anxiety, reading activity, and reading motivation. Mothers provided demographic information and completed measures related to students’ emotional and behavioral difficulties as well as parenting stress, parental distress, and a questionnaire about educational problems during quarantine.ResultsMajor findings showed that during quarantine, children with dyslexia had increased levels of depression and anxiety symptoms, and parents perceived their children as having more emotional symptoms, hyperactivity-inattention, and conduct problems. During quarantine, children and adolescents with dyslexia also showed less reading activity and less reading motivation. Parents also reported significantly more stress, during quarantine compared to pre-quarantine conditions. Some demographic and psychological variables predicted children’s state anxiety as well parental stress. The questionnaire related to impacts of quarantine also revealed several important findings. For example, nearly all parents of children with dyslexia reported (a) difficulties in establishing study routines, (b) that the quarantine negatively affected their child’s learning, and (c) that they did not receive sufficient help from teachers on how to support their child’s learning. Additionally, the vast majority of the parents were very worried about the child’s learning and school success, the child’s motivation and interest in reading, the child’s peer relations, and the professional skills of the child’s teacher.ConclusionThis study offers a preliminary investigation into this topic and elucidates several psychoeducational challenges that children with dyslexia and their families have experienced during the quarantine in Spain. Study findings highlight the need to provide immediate support for children with dyslexia and emphasizes the importance of developing prevention programs to mitigate any future negative impacts of COVID-19 on children with dyslexia and their parents.

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Section: Study Limitations Implications and Future Research Directionsmentioning

confidence: 99%

Psychoeducational Challenges in Spanish Children With Dyslexia and Their Parents’ Stress During the COVID-19 Pandemic

et al. 2021

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“…given that parents of children with FXS often report clinically significant levels of mental health difficulties and stress which can negatively affect how parents view their relationship with their partner and children, finances, employment opportunities and coping abilities (Iriarte-Redín et al, 2020;Ouyang et al, 2014;Potter et al, 2022).…”

Section: Fragile X Syndrome Through the Life Coursementioning

confidence: 99%

“…While it is important to have guidelines for the person with FXS, families also ask that a holistic approach is taken with support and guidance for the entire family (e.g., parents, siblings, and the wider family). Offering guidance at the family level is particularly important given that parents of children with FXS often report clinically significant levels of mental health difficulties and stress which can negatively affect how parents view their relationship with their partner and children, finances, employment opportunities and coping abilities (Iriarte‐Redín et al, 2020; Ouyang et al, 2014; Potter et al, 2022). This whole‐family dynamic will be paramount for each stage of FXS through the life‐course.…”

Section: Fragile X Syndrome Through the Life Coursementioning

confidence: 99%

A holistic approach to fragile X syndrome integrated guidance for person‐centred care

Johnson,

Stanfield,

Scerif

et al. 2024

Research Intellect Disabil

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BackgroundThe Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS).MethodsThis article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first‐hand experience of clinicians who have worked with those living with FXS over many years.ResultsThe article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions.ConclusionIntegrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person‐centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS.

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“…Components of time (e.g., for how long has the child or parent been experiencing quarantine) and specific behavior (e.g., to what degree has "typical" educational conditions, such as in-person schooling, changed during quarantine) must also be examined to understand short-term and long-term impacts of quarantine. Although it is impossible to know for sure right now whether negative impacts of quarantine will improve or worsen over time, many have argued that psychological and educational impacts will worsen over time , especially for those who are most economically, educationally, or psychologically vulnerable (Miranda et al, 2005(Miranda et al, , 2008(Miranda et al, , 2013Soriano-Ferrer and Contreras, 2012;Bonifacci et al, 2019;Asbury et al, 2020;Colizzi et al, 2020;Marchetti et al, 2020a;Smith, 2020;Iriarte-Redín et al, 2021).…”

Section: Study Limitations Implications and Future Research Directionsmentioning

confidence: 99%

Coronavirus Disease (COVID-19): Psychoeducational Variables Involved in the Health Emergency

2022

Frontiers Research Topics

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About FrontiersFrontiers is more than just an open-access publisher of scholarly articles: it is a pioneering approach to the world of academia, radically improving the way scholarly research is managed. The grand vision of Frontiers is a world where all people have an equal opportunity to seek, share and generate knowledge. Frontiers provides immediate and permanent online open access to all its publications, but this alone is not enough to realize our grand goals. Frontiers Journal SeriesThe Frontiers Journal Series is a multi-tier and interdisciplinary set of open-access, online journals, promising a paradigm shift from the current review, selection and dissemination processes in academic publishing. All Frontiers journals are driven by researchers for researchers; therefore, they constitute a service to the scholarly community. At the same time, the Frontiers Journal Series operates on a revolutionary invention, the tiered publishing system, initially addressing specific communities of scholars, and gradually climbing up to broader public understanding, thus serving the interests of the lay society, too. Dedication to QualityEach Frontiers article is a landmark of the highest quality, thanks to genuinely collaborative interactions between authors and review editors, who include some of the world's best academicians. Research must be certified by peers before entering a stream of knowledge that may eventually reach the public -and shape society; therefore, Frontiers only applies the most rigorous and unbiased reviews. Frontiers revolutionizes research publishing by freely delivering the most outstanding research, evaluated with no bias from both the academic and social point of view. By applying the most advanced information technologies, Frontiers is catapulting scholarly publishing into a new generation.

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Impact of Fragile X Syndrome on Their Families

Cited by 4 publications

References 70 publications

Psychoeducational Challenges in Spanish Children With Dyslexia and Their Parents’ Stress During the COVID-19 Pandemic

Psychoeducational Challenges in Spanish Children With Dyslexia and Their Parents’ Stress During the COVID-19 Pandemic

A holistic approach to fragile X syndrome integrated guidance for person‐centred care

Coronavirus Disease (COVID-19): Psychoeducational Variables Involved in the Health Emergency

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