Quality of Life of Adults with Down syndrome in Virginia

The hypothesis posed was whether being part of a football/soccer team influenced the quality of life (QL) of the people who participated in it since their perception of themselves is enhanced by factors, such as self-determination, social inclusion, emotional well-being, physical well-being, material well-being, rights, personal development, and internal relationships. The objective was to evaluate the QL of people with Down Syndrome (DS) using their self-perception (n = 39) and the perception of the informants (family members, teachers) (n = 39). The KidsLife-Down Scale, with a few modifications, was used. In general, differences of opinion between the subgroups of participants with DS and informants showed that results were higher in terms of perception for participants in the DS subgroup. Scores for all variables were higher for those participants with DS who said they did engage in practicing competitive football/soccer. Although the perception of informants provides a great deal of information regarding the QL of participants with DS, participants with DS should also be involved in the evaluation process and their self-perceptions taken into account. It is not participating in a football team that causes the conclusions of the study, but training (which includes the friendly matches that are played), the cause correlated with the improvements detected in the athlete’s DS.

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Sleep Disorders in Adults with Down Syndrome

Journal of Clinical Medicine ◽

10.3390/jcm10143012 ◽

2021 ◽

Vol 10 (14) ◽

pp. 3012

Author(s):

Sandra Giménez ◽

Miren Altuna ◽

Esther Blessing ◽

Ricardo M. Osorio ◽

Juan Fortea

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Down Syndrome ◽

Sleep Disorders ◽

Negative Impact ◽

Current Knowledge ◽

Sleep Disruption ◽

Physical And Mental Health ◽

Future Directions

Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinical sleep guidelines. Untreated sleep disorders have a negative impact on physical and mental health, behavior, and cognitive performance. Growing evidence suggests that sleep disruption may also accelerate the progression to symptomatic Alzheimer’s disease (AD) in this population. It is therefore imperative to have a better understanding of the sleep disorders associated with DS in order to treat them, and in doing so, improve cognition and quality of life, and prevent related comorbidities. This paper reviews the current knowledge of the main sleep disorders in adults with DS, including evaluation and management. It highlights the existing gaps in knowledge and discusses future directions to achieve earlier diagnosis and better treatment of sleep disorders most frequently found in this population.

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Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18020419 ◽

2021 ◽

Vol 18 (2) ◽

pp. 419

Author(s):

Anna Lee ◽

Kathleen Knafl ◽

Marcia Van Riper

Keyword(s):

Quality Of Life ◽

Down Syndrome ◽

Scoping Review ◽

Personal Development ◽

Well Being ◽

Future Research ◽

Cross Sectional ◽

Children With Down Syndrome ◽

Family Variables

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

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Total Hip Arthroplasty in Down Syndrome Patients: An Improvement in Quality of Life

The Journal of Arthroplasty ◽

10.1016/j.arth.2012.08.022 ◽

2013 ◽

Vol 28 (4) ◽

pp. 701-706 ◽

Cited By ~ 11

Author(s):

Allan E. Gross ◽

John J. Callaghan ◽

Michael G. Zywiel ◽

Justin J. Greiner ◽

Yona Kosashvili ◽

...

Keyword(s):

Quality Of Life ◽

Down Syndrome ◽

Total Hip Arthroplasty ◽

Hip Arthroplasty ◽

Total Hip

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The perspective of emerging adults with Down syndrome – On quality of life and well-being

Journal of Intellectual Disabilities ◽

10.1177/17446295211030097 ◽

2021 ◽

pp. 174462952110300

Author(s):

Kjersti Wessel Jevne ◽

Marit Kollstad ◽

Anne-Stine Dolva

Keyword(s):

Quality Of Life ◽

Down Syndrome ◽

Emerging Adults ◽

Communication Technology ◽

Well Being ◽

Subjective Well Being ◽

Safe Place ◽

Social Leisure ◽

Information And Communication

This study explored the thoughts of emerging adults with Down syndrome on quality of life and subjective well-being. Eight 22-year-olds participated in interviews. Data was analysed with content analysis. Four themes were revealed: Work based on interest and capability, having an active and social leisure life, a safe place to live and the use of information and communication technology. Two context related patterns were identified showing that quality of life and subjective well-being were related to individualised support to enhance independency in work, social leisure and place of living. Knowledge of their perception of independency and their awareness of needing customised help and support is valuable. This study supports the proposed emerging Quality of Life Supports Paradigm in the field of intellectual disabilities, which integrates key concepts of quality of life and supports.

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Dance, functioning and quality of life in children with Down syndrome and autism spectrum disorder dance, functioning and quality of life in Down syndrome and autism spectrum disorder

Clinical Child Psychology and Psychiatry ◽

10.1177/13591045211061795 ◽

2021 ◽

pp. 135910452110617

Author(s):

Evanilza T. Adorno ◽

Daiany C de J. Dos Santos ◽

Beatriz M. DeJesus ◽

Adrielle A. Passos ◽

Lavínia Teixeira-Machado

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Down Syndrome ◽

Rating Scale ◽

Functional Independence Measure ◽

Functional Independence ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Children With Down Syndrome

This study investigated dance practice in psychosocial and functional aspects, and quality of life in children with Down syndrome and autism spectrum disorder. Children with DS and ASD, between 3 and 12 years old, attended a dance program during 16 sessions/lessons, lasting 60 min, twice a week, in suitable place. Functional Independence Measure (FIM), Childhood Autism Rating Scale SF-36 quality of life survey, and Knowledge, Attitude and Practice Inquiry (KAP Inquiry) were applied before and after dance classes. Eleven participants concluded the study. Functional independence changes were observed in relation to self-care, sphincter control, locomotion, and communication domains. Children’ “quality of life” reported by parents showed changes in functional capacity, vitality, mental health, physical and social aspects, and general state of health domains. These findings suggest that regular dance practice can underlie psychosocial adjustments in children with DS and ASD.

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Down Syndrome and Quality of Life: A Case Report

International Journal of Medical Students ◽

10.5195/ijms.2015.128 ◽

2015 ◽

Vol 3 (2) ◽

pp. 112-114

Author(s):

Hilary L. Schroeder ◽

Marianinha Joanes ◽

Andre Small ◽

Raghu Maramraj,

Keyword(s):

Quality Of Life ◽

Down Syndrome ◽

Early Onset ◽

Quality Care ◽

Well Being ◽

Cardiac Complications ◽

African American Female ◽

Crucial Component ◽

Patient’S History

Background: Quality of life is considered a crucial component to the well-being of patients with Down syndrome. The strength of quality care through stable social and psychological interactions has built a framework for a positive well-being for patients with Down syndrome, improving their quality of life. Case: A 55-year-old African American female with a history of Down syndrome, congenital heart disease, and newly-diagnosed early onset Alzheimer’s disease presented with an arm contusion resulting from regular caretaking. The patient’s history was reviewed, and the complexity of her condition was discovered. While a subset of Down syndrome patients have cardiac complications and others have early-onset Alzheimer’s, our patient had both. We believe this complicated her condition. After the diagnosis of Alzheimer’s was made, the caregivers noticed a significant decline in her ability to communicate and continue day-to-day activities. Despite the decline in functions, a positive mood was apparent. Conclusion: Multiple medical interventions, along with strong family support, positively contributed to the patient’s quality of life. Therapies targeting cognition could result in the maintenance of quality of life and, ultimately, lower health care costs.

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