scholarly journals Evaluating Quality of Life in Families With Williams Syndrome Patients

2020 ◽  
Author(s):  
ESTHER MORALEDA ◽  
Mario Arana ◽  
Patricia López
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Theirs children and adolescents were between 4 and 20 years old. Eight main quality of life dimensions were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability themselves did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

scholarly journals Evaluating quality of life in families with Williams Syndrome patients

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Esther Moraleda Sepúlveda ◽  
Patricia López Resa
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rights Results The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p < .05). Conclusions These results led us to analyse the social and emotional implications for families and their environment.

scholarly journals EVALUATING QUALITY OF LIFE IN FAMILIES WITH WILLIAMS SYNDROME PATIENTS

2021 ◽  
Author(s):  
Esther Moraleda Sepúlveda ◽  
Mario Arana-Zumaquero ◽  
Patricia López-Resa
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

scholarly journals Evaluating Quality Of Life In Families With Williams Syndrome Patients

2020 ◽  
Author(s):  
Esther Moraleda-Sepúlveda ◽  
Mario Arana-Zumaquero ◽  
Patricia López-Resa
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome. Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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 Pengembangan Alat Ukur Quality of Life Urban Community

2017 ◽  
Vol 1 (1) ◽  
pp. 272
Author(s):  
Yeni Anna Appulembang ◽  
Fransisca Iriani R. Dewi
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Personal Development ◽  
Social Inclusion ◽  
Urban Community ◽  
Well Being ◽  
Internal Consistency Reliability ◽  
Face Validity ◽  
Development Fund

Kajian mengenai kualitas hidup sudah semakin berkembang dalam beberapa dekade terakhir. Kualitas hidup menurut WHO menekankan adanya persepsi dari individu mengenai posisi kehidupan.Kajian mengenai kualitas hidup sudah semakin berkembang dalam beberapa dekade terakhir. Ide awal pengukuran kualitas hidup untuk mengetahui sejauh mana sekelompok masyarakat memiliki standarisasi dalam kehidupan yang diukur dari aspek kualitas kehidupan mereka (Cummin & Liitchers dalam Saputra & Nurizzka, 2008). Tujuan penelitian ini adalah pengembangan alat ukur quality of life khususnya masyarakat perkotaan di Jakarta. Butir-butir pada alat ukur ini digunakan untuk mengukur kualitas hidup masyarakat diperkotaan. Metode penelitian yang digunakan adalah survei dengan jumlah responden sebanyak 586 subyek. Karakteristik subyek pada penelitian ini adalah dewasa yang berusia minimal 20 – 60 tahun, tinggal di Jakarta dan berjenis kelamin pria atau wanita. Alat ukur ini berlandaskan teori dari WHO maupun penemuan dari Alberta’s Development Fund (RADF) yang dilakukan pada tahun 2009. Dengan menggunakan temuan Alberta’s Development Fund ( RADF), penelitian ini menggunakan tujuh faktor yaitu: (1) Emotional Well-Being; (2) Interpersonal Relations; (3) Material Well-Being; (4) Personal Development; (5) Physical Well-Being; (6) Self-Determination; (7) Social Inclusion. Pada penelitian ini dilakukan beberapa pengujian diantaranya adalah pengujian face validity, content validity, internal consistency reliability. Pada pengujian reliabilitas, diperoleh nilai internal consistency reliability sebesar 0.923. Selain itu juga dilakukan uji perbedaan pada sosio demografis seperti usia, jenis kelamin, wilayah tinggal. Hasil uji perbedaan hanya menemukan adanya perbedaan quality of life berdasarkan usia. Kata kunci: alat ukur quality of life, urban community.

scholarly journals Quality of Life in Students From Four States of Mexico

2019 ◽  
Vol 4 (2) ◽  
pp. 45
Author(s):  
Julio Cu Farfan Lopez ◽  
Jesus Alberto Garcia Garcia ◽  
Yolanda Oliva Pena ◽  
Gabriela Moran Delgado
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Interpersonal Relationships ◽  
Personal Development ◽  
Social Inclusion ◽  
Item Analysis ◽  
Well Being ◽  
Personal Factors ◽  
High Level

The objective of this work was to know the Quality of Life of young people of four states of Mexico with very marked cultural and geographical characteristics. To achieve the objective, the GENCAT Scale was used, proposed by Verdugo, Arias and others (2009) in which it is based on 8 sub scales: Emotional well-being, Interpersonal relationships, Material well-being, Personal development, Physical well-being, Self-determination, Social inclusion and Human rights. The sample was selected from a non-probabilistic sample of 620 young people. The instrument was validated with an item analysis in which it was obtained in Cronbach's alpha of 0.92. A comparative gender study was carried out and significant differences were found with the T test in four of the sub scales. It is concluded that young people perceive two spheres in their quality of life: the first from the personal factors is perceived very low, while the second, from the social or external factors is perceived with very high values. That is, when assessing the quality of life, young people are depersonalized, but with a high level of support from their context.

scholarly journals Quality of Life: Changes in Self Perception in People with DS who Participate in Laliga Genuine Santander. Self Reports and External Reports

2020 ◽  
Author(s):  
Rocío Camacho ◽  
Cristina Castejón-Riber ◽  
Francisco Requena ◽  
Julio Camacho ◽  
Arturo Gallego ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interpersonal Relationships ◽  
Personal Development ◽  
Social Inclusion ◽  
Down's Syndrome ◽  
Evaluation Process ◽  
Down’S Syndrome ◽  
Well Being ◽  
Self Perception

The hypothesis posed was whether participation in LaLiga Genuine Santander (competitive football) influenced the quality of life (QL) of the people who participated in it, since their perception of themselves is enhanced by all the aformentioned factors (self-determination, social inclusion, emotional well-being, physical well-being, material well-being, rights, personal development, interpersonal relationships). The objective was to evaluate the QL of people with Down's 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. Despite the perception of informants provides a great deal of information regarding the QL of participants with DS, the latter should be involved in the evaluation process and their self perceptions taken into account. Our research shows that participation in the league modifies the perceptions of the participants with Down's Syndrome regarding their quality of life. However, these perceptions are not shared by the informants.

scholarly journals Estudio cualitativo sobre discapacidad intelectual y trabajo protegido. La orientación como herramienta para mejorar la calidad de vida/Qualitative study of intellectual disability and sheltered work. Vocational guidance as a tool to improve quality of life

2018 ◽  
Vol 28 (3) ◽  
pp. 82
Author(s):  
Cristina Laborda Molla ◽  
Henar González Fernández
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Intellectual Disability ◽  
Social Inclusion ◽  
Well Being ◽  
Improve Quality ◽  
Structured Interviews ◽  
Calidad De Vida ◽  
Discapacidad Intelectual

RESUMEN Introducción: El empleo es una herramienta clave para optimizar la inserción social y mejorar la calidad de vida (CV) de las personas con discapacidad intelectual (DI). Esta investigación estudia la calidad del empleo de personas con DI en Centros Especiales de Empleo (CEE) y en Centros Ocupacionales (CO). Método: Se desarrollaron 186 entrevistas semiestructuradas; 157 a empleados y 32 a empleadores de las dos tipologías de centros. Se recogió información referente a la naturaleza del centro, su organización, posibilidades de promoción y el nivel de bienestar de los trabajadores. Resultados: Los primeros datos muestran que existen tres elementos que determinan las posibilidades de desarrollo profesional de personas con DI y el nivel en la calidad de su empleo: la orientación profesional, la formación a lo largo de la vida y la intervención en procesos participativos. En función de ello se ha detectado que carecen de oportunidades para implicarse en los procesos de decisión de su vida sociolaboral, no tienen acceso generalizado a estudios postobligatorios reglados o de formación permanente y no existe el apoyo natural como elemento normalizador, entre otras. Conclusiones: La mejor ocupabilidad del colectivo depende de un proceso de orientación vital que abarque no sólo períodos de toma de decisiones y transición al mundo laboral, sino que se extienda a lo largo de toda su vida profesional. La finalidad es la mejora laboral para avanzar hacia la optimización de la calidad de vida.ABSTRACTIntroduction: Employment is a key tool to optimize social inclusion and improve quality of life (QoL) of people with Intellectual Disability (ID). This study explores the employment’s quality of workplace of people with ID in Special Employment Centers and Occupational Centers. Method: 186 semi-structured interviews were developed; 157 to employees and 32 to employers of the two types of centers. Information was collected regarding the nature of the center, its organization, possibilities for promotion and the level of workers well-being. Results: First data shows that there are three elements that determine the possibilities of professional development of people with ID and the level of quality of their employment: professional guidance, lifelong learning and intervention in participatory processes. As a result, they have been found to lack opportunities to become involved in the decision-making processes of their socio-labor life; they do not have widespread access to regulated post-compulsory studies or permanent training and there is no natural support as a normalizing element, among others. Conclusions: The better job placement of the collective depends on a process of vital orientation that includes not only periods of decision making and transition to work, but also extends throughout their professional life. The aim is to improve their work situation to advance towards the optimization of the quality of life.

scholarly journals Impact of aging on the quality of life of workers with intellectual disabilities

2020 ◽  
Vol 12 (2) ◽  
pp. 81
Author(s):  
Jose Luis Cuesta Gómez ◽  
Raquel Fuente De la Fuente Anuncibay ◽  
Maria Teresa Ortega Camarero ◽  
Jerónimo Javier González Bernal
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Social Relations ◽  
Social Inclusion ◽  
Healthy Aging ◽  
Emotional Wellbeing ◽  
Negative Impacts ◽  
The Impact ◽  
Spearman Test

The increased life-expectancy of people with intellectual disability is generating new needs for attention and care that can assist healthy aging. This question is accentuated among workers from Special Employment Centers, for whom aging has a twofold impact, in so far as it interferes with their professional development and their means of earning a living. A study is conducted with a sample of 49 workers from a Special Employment Center, with the objective of analyzing the impact of ageing on the quality of life of people with intellectual disability aged over 45 years old.  The information was gathered with the INICO-FEAPS Integral Evaluation Scale of the Quality of Life of People with Intellectual Disability (Verdugo, Gómez, Arias, Santamaría, Clavero & Tamarit, 2013). The Mann-Whitney U test; the Spearman test and Anovas are used for data analysis. The results highlighted the importance of age on quality-of-life deterioration, evident from lower scores for emotional wellbeing, social inclusion and social relations, among others, as well as the differences according to gender and training of the group. The need is noted to establish challenges and proposals that will minimize the negative impacts of aging on the journey towards a non-active stage. One limitation of the study is the need for larger sample sizes.

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