Psychological Well-being in Fathers of Adolescents and Young Adults With Down Syndrome, Fragile X Syndrome, and Autism

On 10 March 2020, in Italy, a total lockdown was put in place to limit viral transmission of COVID-19 infection as much as possible. Research on the psychological impact of the COVID-19 pandemic highlighted detrimental effects in children and their parents. However, little is known about such effects in children with neurodevelopment disorders and their caregivers. The present study investigated how the lockdown has impacted the physiological and psychological well-being of children with Fragile X-Syndrome (FXS), aged from 2 to 16 years, and their mothers. In an online survey, 48 mothers of FXS children reported their perception of self-efficacy as caregivers and, at the same time, their children’s sleep habits, behavioral and emotional difficulties during, and retrospectively, before the lockdown. Results showed a general worsening of sleep quality, and increasing behavioral problems. Although mothers reported a reduction in external support, their perception of self-efficacy as caregivers did not change during the home confinement compared to the period before. Overall, the present study suggested that specific interventions to manage sleep problems, as well as specific therapeutic and social support for increasing children and mother psychological well-being, need to be in place to mitigate the long-term effects of a lockdown.

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Pragmatic Language Features of Mothers With the FMR1 Premutation Are Associated With the Language Outcomes of Adolescents and Young Adults With Fragile X Syndrome

Journal of Speech Language and Hearing Research ◽

10.1044/2015_jslhr-l-15-0102 ◽

2016 ◽

Vol 59 (1) ◽

pp. 49-61 ◽

Cited By ~ 9

Author(s):

Jessica Klusek ◽

Sara E. McGrath ◽

Leonard Abbeduto ◽

Jane E. Roberts

Keyword(s):

Young Adults ◽

Fragile X Syndrome ◽

Fragile X ◽

Adolescents And Young Adults ◽

Pragmatic Language ◽

Language Outcomes ◽

Fmr1 Premutation

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Medical Risk and Resilience in Adolescents and Young Adults With Epilepsy: The Role of Self-Management Self-Efficacy

Journal of Pediatric Psychology ◽

10.1093/jpepsy/jsz063 ◽

2019 ◽

Vol 44 (10) ◽

pp. 1224-1233 ◽

Cited By ~ 3

Author(s):

Melissa L Engel ◽

Andrew J Barnes ◽

Thomas R Henry ◽

Ann E Garwick ◽

Peter B Scal

Keyword(s):

Young Adults ◽

Self Efficacy ◽

Intrinsic Factor ◽

Well Being ◽

Adolescents And Young Adults ◽

Self Management ◽

Risk Scores ◽

Psychological Well Being ◽

Medical Risk

Abstract Objective Medical factors that put adolescents and young adults (AYA) with epilepsy at risk for poor health-related quality of life (HRQOL) are well-established. Less known is whether medical risk is associated with decreases in global psychological well-being and how self-management self-efficacy might contribute to resilience. The current study seeks to (a) examine the relationship between medical risk and both HRQOL and psychological well-being in AYA with epilepsy and (b) investigate the potential moderating role of self-management self-efficacy. Methods A sample of 180 AYA with epilepsy, aged 13–24 years, was recruited from clinic and community settings and completed questionnaires. A medical risk gradient composed of seizure frequency, antiepileptic drugs, and other health problems was created. HRQOL, psychological well-being, and self-management self-efficacy were assessed. Results Medical risk was negatively associated with HRQOL, such that youth with greater risk scores reported lower HRQOL (r = −0.35, p < .01). However, there was no significant relationship between medical risk and psychological well-being (r = −0.08, p = .31). Self-efficacy was positively correlated with HRQOL and well-being (r = 0.50, p < .01; r = 0.48, p < .01). A moderation effect was detected, such that the positive effect of self-efficacy on HRQOL differed across medical risk levels. Implications Cultivating psychological strengths, as opposed to solely addressing medical problems, may be a promising intervention target when treating AYA with epilepsy, including those navigating healthcare transitions. Self-efficacy predicted HRQOL at most levels of risk, suggesting an important modifiable intrinsic factor that may promote resilience.

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The Influence of Hyperactivity, Impulsivity, and Attention Problems on Social Functioning in Adolescents and Young Adults With Fragile X Syndrome

Journal of Attention Disorders ◽

10.1177/1087054715571739 ◽

2015 ◽

Vol 23 (2) ◽

pp. 181-188 ◽

Cited By ~ 9

Author(s):

Lindsay C. Chromik ◽

Eve-Marie Quintin ◽

Jean-François Lepage ◽

Kristin M. Hustyi ◽

Amy A. Lightbody ◽

...

Keyword(s):

Young Adults ◽

Social Functioning ◽

Fragile X Syndrome ◽

Fragile X ◽

Attention Problems ◽

Adolescents And Young Adults ◽

Adhd Symptoms ◽

Long Term Effects ◽

Cross Sectional ◽

The Social

Objective: Individuals with fragile X syndrome (FXS) present primarily with cognitive and social deficits in addition to symptoms of ADHD. The relationship between symptoms of ADHD, cognitive functioning, and social skills has never been explicitly studied. Method: Here, we analyzed both longitudinal ( n = 70; Time 1: ages 6-18; Time 2: ages 15-26) and cross-sectional ( n = 73; Time 2 only) data using hierarchical linear regression to assess how global intellectual functioning (IQ) and symptoms of ADHD influence social functioning in individuals with FXS. Results: We found that ADHD symptoms at Times 1 and 2 consistently predict social functioning in both males and females with FXS at Time 2. Conclusion: Our results suggest that addressing ADHD symptoms in childhood may have positive, long-term effects on the social functioning of adolescents and young adults with FXS.

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