The impact of caring for adults with intellectual disability on the quality of life of parents

2012 ◽  
Vol 56 (6) ◽  
pp. 609-619 ◽  
Author(s):  
A. Yoong ◽  
S. Koritsas
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
The Impact

scholarly journals Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

2020 ◽  
Vol 17 (23) ◽  
pp. 9007
Author(s):  
Cristina Jenaro ◽  
Noelia Flores ◽  
Belén Gutiérrez-Bermejo ◽  
Vanessa Vega ◽  
Carmen Pérez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Parenting Stress ◽  
Parental Stress ◽  
Family Members ◽  
Family Quality Of Life ◽  
Quality Of Life Scale ◽  
The Family ◽  
The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

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 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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