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

Author(s):  
Anna Lee ◽  
Kathleen Knafl ◽  
Marcia Van Riper

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.

2021 ◽  
Vol 11 (2) ◽  
pp. 226
Author(s):  
Rocío Camacho ◽  
Cristina Castejón-Riber ◽  
Francisco Requena ◽  
Julio Camacho ◽  
Begoña Escribano ◽  
...  

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.


Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 954
Author(s):  
AlBandary AlJameel ◽  
Huda AlKawari

As individuals with Down syndrome often suffer from oro-facial abnormalities which can affect their oral health as well as their and their family’s quality of life, this link was examined in the present study. Using a descriptive cross-sectional design, 63 parents of children with Down syndrome who attended two special daycare centres in Riyadh, Saudi Arabia, were surveyed using a self-administered validated questionnaire. The findings yielded by the Statistical Package for the Social Sciences (SPSS Inc., Chicago, IL, USA) version 17 revealed that in 34.9% children and 46% of their families, quality of life was affected by oral health. Moreover, 54% children experienced physical pain, which was severe in 22.2% of the cases. Further analyses revealed that families’ emotional lives were negatively affected by children’s oral health status. Therefore, as oral health in children with Down syndrome exerts significant adverse impacts on different aspects of their lives and those of their families, timely provision of required oral health care is warranted.


2010 ◽  
Vol 2010 ◽  
pp. 1-13 ◽  
Author(s):  
Sandy Thurston ◽  
Louise Paul ◽  
Patricia Loney ◽  
Maria Wong ◽  
Gina Browne

Purpose. To determine the quality of life, associations, and costs of a multidiagnosis group of special needs children.Methods. In this cross-sectional survey families were identified from the Children's Treatment Network, a Canadian multisector program for children with special needs. Families were eligible if the child was aged 2–19 years, resided in Simcoe/York, and if there were multiple child/family needs. Quality of life was measured using the PedsQL (n=429).Results. Quality of life scores were lower in this group compared to published healthy and single disorder groups of children. Quality of life scores decreased with advancing age. Child psychosocial well-being was more strongly associated with child/family variables compared to physical well-being. Health Utilization costs were higher in children with greater physical challenges.Conclusions. Further research is needed in other complex needs child samples to confirm the decrease in quality of life found in these children into adolescence. Investigations into the interactions of child and family variables are needed.


Author(s):  
Gyesook Yoo ◽  
Soomi Lee

Workplace bullying entails negative consequences on workers’ life. Yet, there is lack of research on workplace bullying in an Asian context. Moreover, less is known about the potential mechanisms linking workplace bullying and employee well-being. This study examined the associations between workplace bullying and Korean employees’ well-being (quality of life, occupational health) and whether the associations were mediated by work-to-family conflict. Cross-sectional data came from 307 workers in South Korea who were employed in healthcare, education, and banking industries. Analyses adjusted for industry, age, gender, education, marital status, and work hours. Employees who had more exposure to workplace bullying reported lower levels of quality of life and occupational health. These associations were mediated by work-to-family conflict, such that more exposure to workplace bullying was associated with greater work-to-family conflict, which, in turn, was associated with lower levels of quality of life and occupational health. These mediating pathways were consistent across the three industries. Korean employees who experience more workplace bullying may bring unfinished work stress to the home (thus greater work-to-family conflict), which impairs their well-being. Future research may need to consider the role of work-to-family conflict when targeting to reduce the negative consequences of workplace bullying.


GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim

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.


Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2648
Author(s):  
Shila Minari Hargreaves ◽  
Eduardo Yoshio Nakano ◽  
Heesup Han ◽  
António Raposo ◽  
Antonio Ariza-Montes ◽  
...  

This study aimed to evaluate the general quality of life (QoL) of Brazilian vegetarians. A cross-sectional study was conducted with Brazilian vegetarian adults (18 years old and above). Individuals were recruited to participate in a nationwide online survey that comprised the WHOQOL-BREF as well as sociodemographic and characterization questions related to vegetarianism. The WHOQOL-BREF is composed of 24 items which are divided into four domains (domain 1: physical health; domain 2: psychological well-being; domain 3: social relationships; and domain 4: environment), plus two general items which were analyzed separately, totaling 26 items. The answers from the questionnaire were converted into scores with a 0–100 scale range, with separate analyses for each domain. Results were compared among groups based on the different characteristics of the vegetarian population. A total of 4375 individuals completed the survey. General average score results were 74.67 (domain 1), 66.71 (domain 2), 63.66 (domain 3) and 65.76 (domain 4). Vegans showed better scores when compared to the other vegetarians, except in domain four, where the statistical difference was observed only for semi-vegetarians (lower score). Individuals adopting a vegetarian diet for longer (>1 year) showed better results for domains one and two, with no difference for the other domains. Having close people also adopting a vegetarian diet positively influenced the results for all domains. On the other hand, it was not possible to distinguish any clear influence of the motivation for adopting a vegetarian diet on the scores’ results. Adopting a vegetarian diet does not have detrimental effects on one’s QoL. In fact, the more plant-based the diet, and the longer it was adopted, the better the results were.


Author(s):  
Rafael Turano Mota ◽  
Helder Márcio Ferreira Júnior ◽  
Fabiane Silva Pereira ◽  
Maria Aparecida Vieira ◽  
Simone de Melo Costa

Abstract Objective: To characterize scientific publications on the quality of life of people with lung cancer in order to explore current knowledge of the subject, with emphasis on assessment instruments and methodological aspects. Method: A scoping type literature review was performed. Articles were sought in the databases of the Virtual Health Library, in an integrative manner, with the descriptors: Quality of life and Lung Neoplasms, with no date of publication or language restrictions (n=138). The selection of articles was based on inclusion and exclusion criteria defined in the study proposal. Results: We included 18 publications published between 2006 and 2017, the majority (n = 10) of which had a cross-sectional design. Eight different instruments were used to evaluate the quality of life of patients with lung cancer, four of which were specific for people with cancer. There was a prevalence of the use of the European Organization for Research and Treatment of Cancer Care Quality of Life Questionnaire - EORTC QLQ-C30 (n=8). Prospective studies (n=8) assessed quality of life before and after chemotherapy, physical therapy or pulmonary resection. The studies adopted different methodologies and provided conflicting results of quality of life. Cross-sectional studies with comparatively healthy subjects found an inferior quality of life for people with lung cancer. Conclusion: The scoping review contributed to the identification of the multiple evaluated instruments, both generic and specific. It found a lack of homogeneity in the methodological approaches of the studies. Further prospective studies with a specific instrument and methodological standardization to evaluate the quality of life of people with lung cancer are recommended.


2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.


2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.


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