Psychological well-being of mothers of youth with fragile X syndrome: syndrome specificity and within-syndrome variability

2006 ◽  
Vol 50 (12) ◽  
pp. 894-904 ◽  
Author(s):  
P. Lewis ◽  
L. Abbeduto ◽  
M. Murphy ◽  
E. Richmond ◽  
N. Giles ◽  
...  
Keyword(s):  
Fragile X Syndrome ◽  
Fragile X ◽  
Well Being ◽  
Psychological Well Being

scholarly journals Impact of the COVID-19 Italian Lockdown on the Physiological and Psychological Well-Being of Children with Fragile X Syndrome and Their Families

2021 ◽  
Vol 18 (11) ◽  
pp. 5752
Author(s):  
Elisa Di Giorgio ◽  
Roberta Polli ◽  
Marco Lunghi ◽  
Alessandra Murgia
Keyword(s):  
Fragile X Syndrome ◽  
Behavioral Problems ◽  
Self Efficacy ◽  
Online Survey ◽  
Fragile X ◽  
Well Being ◽  
External Support ◽  
Sleep Habits ◽  
Psychological Well Being ◽  
Perception Of Self

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.

scholarly journals Unaffected siblings of adolescents and adults with fragile X syndrome: Effects on maternal well-being.

2019 ◽  
Vol 33 (4) ◽  
pp. 487-492 ◽  
Author(s):  
Lauren V. Usher ◽  
Leann S. DaWalt ◽  
Jan S. Greenberg ◽  
Marsha R. Mailick
Keyword(s):  
Fragile X Syndrome ◽  
Fragile X ◽  
Well Being ◽  
Adolescents And Adults

scholarly journals Maternal well-being and child behavior in families with fragile X syndrome

2014 ◽  
Vol 35 (10) ◽  
pp. 2477-2486 ◽  
Author(s):  
Claire T. Hauser ◽  
Sara T. Kover ◽  
Leonard Abbeduto
Keyword(s):  
Fragile X Syndrome ◽  
Child Behavior ◽  
Fragile X ◽  
Well Being

Modeling Family Adaptation to Fragile X Syndrome

2014 ◽  
Vol 119 (1) ◽  
pp. 33-48 ◽  
Author(s):  
Melissa Raspa ◽  
Donald B. Bailey ◽  
Carla Bann ◽  
Ellen Bishop
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Fragile X Syndrome ◽  
Family Life ◽  
Social Life ◽  
Fragile X ◽  
Well Being ◽  
Parenting Knowledge ◽  
Using Data

Abstract Using data from a survey of 1,099 families who have a child with Fragile X syndrome, we examined adaptation across 7 dimensions of family life: parenting knowledge, social support, social life, financial impact, well-being, quality of life, and overall impact. Results illustrate that although families report a high quality of life, they struggle with areas such as social support, social life, and parenting knowledge. Path analysis revealed that child and family factors play a role in adaptation, but family resources and social supports moderated their effect on quality of life, well-being, and overall impact. The interrelationship among multiple aspects of family life should be examined to improve family resiliency.

The Self-Efficacy in Multiple Sclerosis (SEMS) Scale

2018 ◽  
Vol 34 (5) ◽  
pp. 352-360 ◽  
Author(s):  
Silvia Bonino ◽  
Federica Graziano ◽  
Martina Borghi ◽  
Davide Marengo ◽  
Giorgia Molinengo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Coping Strategies ◽  
Measurement Invariance ◽  
Sense Of Coherence ◽  
Self Efficacy ◽  
Concurrent Validity ◽  
Rasch Analysis ◽  
Well Being ◽  
Psychological Well Being ◽  
And Coping

Abstract. This research developed a new scale to evaluate Self-Efficacy in Multiple Sclerosis (SEMS). The aim of this study was to investigate dimensionality, item functioning, measurement invariance, and concurrent validity of the SEMS scale. Data were collected from 203 multiple sclerosis (MS) patients (mean age, 39.5 years; 66% women; 95% having a relapsing remitting form of MS). Fifteen items of the SEMS scale were submitted to patients along with measures of psychological well-being, sense of coherence, depression, and coping strategies. Data underwent Rasch analysis and correlation analysis. Rasch analysis indicates the SEMS as a multidimensional construct characterized by two correlated dimensions: goal setting and symptom management, with satisfactory reliability coefficients. Overall, the 15 items reported acceptable fit statistics; the scale demonstrated measurement invariance (with respect to gender and disease duration) and good concurrent validity (positive correlations with psychological well-being, sense of coherence, and coping strategies and negative correlations with depression). Preliminary evidence suggests that SEMS is a psychometrically sound measure to evaluate perceived self-efficacy of MS patients with moderate disability, and it would be a valuable instrument for both research and clinical applications.

Relationships Between Bidirectional Work-Family Interactions and Psychological Well-Being

2014 ◽  
Vol 13 (2) ◽  
pp. 87-96 ◽  
Author(s):  
Xi-Chao Zhang ◽  
Oi Ling Siu ◽  
Jing Hu ◽  
Weiwei Zhang
Keyword(s):  
Family Conflict ◽  
Structural Equation ◽  
Time Lag ◽  
Well Being ◽  
Equation Modeling ◽  
Family Interactions ◽  
Work Family Conflict ◽  
Psychological Well Being ◽  
Direct Model ◽  
Work Family

This study investigated the direct, reversed, and reciprocal relationships between bidirectional work-family conflict/work-family facilitation and psychological well-being (PWB). We administered a three-wave questionnaire survey to 260 married Chinese employees using a time lag of one month. Cross-lagged structural equation modeling analysis was conducted and demonstrated that the direct model was better than the reversed causal or the reciprocal model. Specifically, work-to-family conflict at Time 1 negatively predicted PWB at Time 2, and work-to-family conflict at Time 2 negatively predicted PWB at Time 3; further, work-to-family facilitation at Time 1 positively predicted PWB at Time 2. In addition, family-to-work facilitation at Time 1 positively predicted PWB at Time 2, and family-to-work conflict at Time 2 negatively predicted PWB at Time 3.

Associations Between Dutch LGBT Hate Crime Experience, Well-Being, Trust in the Police and Future Hate Crime Reporting

2020 ◽  
Vol 51 (3) ◽  
pp. 171-182
Author(s):  
Allard R. Feddes ◽  
Kai J. Jonas
Keyword(s):  
Psychological Distress ◽  
The Netherlands ◽  
Hate Crime ◽  
Well Being ◽  
Crime Victims ◽  
Crime Reporting ◽  
Survey Study ◽  
Psychological Well Being ◽  
Building Trust ◽  
Reporting Intentions

Abstract. LGBT-related hate crime is a conscious act of aggression against an LGBT citizen. The present research investigates associations between hate crime, psychological well-being, trust in the police and intentions to report future experiences of hate crime. A survey study was conducted among 391 LGBT respondents in the Netherlands. Sixteen percent experienced hate crime in the 12 months prior. Compared to non-victims, victims had significant lower psychological well-being, lower trust in the police and lower intentions to report future hate crime. Hate crime experience and lower psychological well-being were associated with lower reporting intentions through lower trust in the police. Helping hate crime victims cope with psychological distress in combination with building trust in the police could positively influence future reporting.

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