scholarly journals Down Syndrome and Quality of Life: A Case Report

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.

scholarly journals Quality of Life: Changes in Self-Perception in People with down Syndrome as a Result of Being Part of a Football/Soccer Team. Self-Reports and External Reports

2021 ◽  
Vol 11 (2) ◽  
pp. 226
Author(s):  
Rocío Camacho ◽  
Cristina Castejón-Riber ◽  
Francisco Requena ◽  
Julio Camacho ◽  
Begoña Escribano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Evaluation Process ◽  
Well Being ◽  
Self Perception ◽  
Football Team ◽  
Soccer Team

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.

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

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.

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

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.

scholarly journals Levodopa-Responsive Early-Onset Parkinsonism in Down Syndrome

2018 ◽  
Vol 2018 ◽  
pp. 1-3
Author(s):  
Padmini Palat ◽  
Francis Hickey ◽  
Lina Patel ◽  
Elise Sannar
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Down Syndrome ◽  
Early Onset ◽  
Improve Quality

Individuals with Down syndrome (DS) can develop Alzheimer’s disease as early as 30 to 40 years old, but parkinsonism is rarely described. We report on a 20-year-old woman with Down syndrome and parkinsonism who responded dramatically to carbidopa-levodopa. We propose that the occurrence of parkinsonism in individuals with DS may be underreported. Recognizing and treating this condition may improve quality of life.

Patient Experience Factors and Health-Related Quality of Life in Hospitalized Individuals

2019 ◽  
pp. 238-247
Keyword(s):  
Quality Of Life ◽  
Patient Satisfaction ◽  
Quality Care ◽  
Well Being ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Patients With Cancer ◽  
Related Quality ◽  
Health Related

Purpose: To identify a relationship between patient satisfaction with the hospital experience and health-related quality of life (HRQOL), as well as determine predictors of each variable. Participants & Setting: 50 patients with cancer in two adult oncology units in an academic health sciences center. Methodologic Approach: A descriptive, cross-sectional design was used. Patient satisfaction was measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) and HRQOL was assessed using the Quality of Life Patient/Cancer Survivor (QOL-CS) version. Findings: Patients who were single, diagnosed for 6–10 years, and diagnosed for 11 years or longer had significantly lower patient satisfaction scores. Patients with public insurance, diagnosed for 6–10 years, and diagnosed for 11 years or longer had lower QOL-CS scores. Physical and social well-being scores were associated with higher HCAHPS scores. There was a positive relationship between patient satisfaction and physical and social functioning. Patient demographics were related to patient satisfaction and HRQOL. Implications for Nursing: Nurses should have measurable goals to provide high-quality care to patients with cancer, including satisfaction during hospitalization and promotion of HRQOL.

scholarly journals Evaluation of the main oral manifestations associated with Down Syndrome: Integrative review

2021 ◽  
Vol 10 (8) ◽  
pp. e43310817559
Author(s):  
Bruna Karen Pereira dos Santos ◽  
Gislaine Suelen Lucena Silva ◽  
Osório Queiroga de Assis Neto ◽  
Jabes Gennedyr da Cruz Lima ◽  
Beatryz Maria Franco da Silva ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Extra Chromosome ◽  
Well Being ◽  
Distal Portion ◽  
Chromosome 21 ◽  
General Knowledge ◽  
Exclusion Criteria

Down Syndrome or Trisomy of chromosome 21, as it is also known worldwide, is characterized by an error in chromosome distribution with the presence of an extra chromosome in the distal portion of it, generating specific physical and clinical characteristics throughout these people's lives. This paper aims to identify and discuss the main issues related to the role of oral health in the quality of life of people with Down syndrome. A search for papers was carried out in the following electronic databases: BIREME and PubMed, between the years 2010 to 2020. The search for electronic databases retrieved 22 articles. After reading the title and abstract, reading in full and applying the inclusion and exclusion criteria, a total of 09 articles were selected. It is concluded that there are frequent oral alterations in people with Down syndrome and some of these can be observed and treated from the first months of the child's life. In this way, the present study contributes in a scientific way to the general knowledge of oral problems and frequent alterations in people with down syndrome and elucidates their means of prevention and dental treatments from early childhood as a way to improve the quality of life and well-being of these patients.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

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