Behavioral Intervention for Problem Behavior in Children With Fragile X Syndrome

2011 ◽  
Vol 116 (6) ◽  
pp. 457-478 ◽  
Author(s):  
Lauren J Moskowitz ◽  
Edward G Carr ◽  
V. Mark Durand
Keyword(s):  
Quality Of Life ◽  
Problem Behavior ◽  
Fragile X Syndrome ◽  
Behavioral Intervention ◽  
Fragile X ◽  
Family Quality Of Life ◽  
Baseline Design ◽  
Intervention Plan ◽  
The Given

Abstract Parents and professionals typically report problem behavior as a significant concern for children with fragile X syndrome. In the present study, the authors explored whether behaviorally based interventions would result in a reduction in problem behavior and an improvement in quality of life for 3 children with fragile X syndrome and their families. A multiple baseline design was used to demonstrate intervention effects for specific high-priority contexts (i.e., bedtime, running errands, and toileting). A multicomponent intervention plan was developed to teach the parents and child to effectively cope with the particular context. After intervention, there were substantial improvements in problem behavior and family quality of life within the given contexts. Results of this study demonstrated the effectiveness of behavioral intervention for children with fragile X syndrome.

Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe

2016 ◽  
Vol 17 (S1) ◽  
pp. 43-52 ◽  
Author(s):  
Karine Chevreul ◽  
◽  
Coralie Gandré ◽  
Karen Berg Brigham ◽  
Julio López-Bastida ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Social Economic ◽  
Fragile X ◽  
Health Related Quality ◽  
Economic Costs ◽  
Related Quality ◽  
Health Related

3.38 PEDIATRIC QUALITY-OF-LIFE INVENTORY IN FRAGILE X SYNDROME

2019 ◽  
Vol 58 (10) ◽  
pp. S207
Author(s):  
Sarah Fitzpatrick ◽  
Lauren Schmitt ◽  
Ryan Adams ◽  
Ernest V. Pedapati ◽  
Rebecca Shaffer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Quality Of Life Inventory ◽  
Life Inventory

scholarly journals Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome

2020 ◽  
Vol 10 (4) ◽  
pp. 213
Author(s):  
Marika C. Coffman ◽  
Rebecca C. Shaffer ◽  
Lauren M. Schmitt ◽  
Kelli C. Dominick ◽  
Ernest Pedapati ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Parent Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
Degree Of Association

Health-related quality of life (HRQoL) is a multidimensional concept involving physical, psychological, social, and cognitive aspects of life. Individuals with Fragile X syndrome (FXS) experience a life-long disorder that impacts the HRQoL of the affected individual and their family. Thus, HRQoL may be an important outcome measure following intervention. However, it is yet not known whether HRQoL concerns relate to observed impairments in FXS. In the present study, we examined the nature and degree of association between HRQoL and established measures of functioning in FXS using the Parent Report for Children version of the PedsQL 4.0 Generic Core Scales and Cognitive Functioning Scale. We observed significant relationships between HRQoL a nd measures of adaptive behavior, maladaptive behaviors, and social functioning. The present study has implications for treatment outcomes for clinical trials in FXS.

scholarly journals Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism

Autism ◽  
2017 ◽  
Vol 23 (2) ◽  
pp. 383-393 ◽  
Author(s):  
Leann Smith DaWalt ◽  
Lauren V Usher ◽  
Jan S Greenberg ◽  
Marsha R Mailick
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Fragile X Syndrome ◽  
Social Participation ◽  
Social Impact ◽  
Developmental Stages ◽  
Fragile X ◽  
Adolescents And Adults ◽  
Individuals With Intellectual Disabilities

Friendships and social participation are key domains of quality of life for individuals with intellectual disabilities. This study examined the friendships, social and recreational activities, and family social networks of individuals with intellectual disabilities from two distinct diagnostic groups: individuals diagnosed with fragile X syndrome (n = 81) compared with those diagnosed with autistic disorder (n = 226). Within each diagnostic group, individuals in two developmental stages were compared: adolescence and adulthood. Quality of life in friendships and social participation domains was notably low for individuals with fragile X and those with autism. Individuals with fragile X had more friendships and a less negative social impact on the family than individuals with autism. Across both groups, adolescents spent less time with friends and neighbors, and more time in exercising, than did adults.

scholarly journals Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome

2019 ◽  
Vol 50 (3) ◽  
pp. 1056-1063 ◽  
Author(s):  
Sarah E. Fitzpatrick ◽  
Lauren M. Schmitt ◽  
Ryan Adams ◽  
Ernest V. Pedapati ◽  
Logan K. Wink ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Quality Of Life Inventory ◽  
Life Inventory

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.

Family Environment, Sibling Relationship and Rivalry towards Quality of Life

2016 ◽  
Vol 1 (3) ◽  
Author(s):  
Rugayah Hashim ◽  
Hashim Ahmad
Keyword(s):  
Quality Of Life ◽  
Family Environment ◽  
Quantitative Research ◽  
Publishing House ◽  
Sibling Rivalry ◽  
Sibling Relationship ◽  
Family Quality Of Life ◽  
Research Approach ◽  
Economic Developments

Kinship, family composition and household dynamics among siblings are developed positively or negatively in early life right through adulthood. Hence, the purpose of this paper is highlight the importance of family environment in influencing sibling relationship, with emphasis on sibling rivalry. Determining the factors that contribute towards sibling competition is important in counselling and assisting individuals with family issues. From a quantitative research approach, the findings showed that sibling relationships are problematic and has led to jealousies and prejudices especially if parents take sides. Family ties depend on happy sibling interactions which indirectly affects socio-economic developments as social ills are resolved. In ameliorating these private and sensitive issues among family members, the holistic society will benefit psychologically and happiness as well as a better quality of life will be attained.© 2016. The Authors. Published for AMER ABRA by e-International Publishing House, Ltd., UK. Peer–review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians) and cE-Bs (Centre for Environment-Behaviour Studies, Faculty of Architecture, Planning & Surveying, Universiti Teknologi MARA, Malaysia.Keywords: Sibling rivalry; family; quality of life; socio-economic impact

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

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