Positive perceptions and perceived control in families with children with intellectual disabilities: relationship to family quality of life

2016 ◽  
Vol 51 (2) ◽  
pp. 903-918 ◽  
Author(s):  
Fina Ferrer ◽  
Rosa Vilaseca ◽  
Joan Guàrdia Olmos
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Perceived Control ◽  
Family Quality Of Life ◽  
Families With Children

“I Would Like to Have a Normal Brother but I’m Happy With the Brother That I Have”: A Pilot Study About Intellectual Disabilities and Family Quality of Life From the Perspective of Siblings

2021 ◽  
pp. 0192513X2110428
Author(s):  
Raquel A. Correia ◽  
Maria João Seabra-Santos
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Intellectual Disabilities ◽  
Family Relationships ◽  
Leisure Activities ◽  
Well Being ◽  
Family Quality Of Life ◽  
Adult Sibling ◽  
The Disabled

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

scholarly journals Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

2017 ◽  
Vol 14 (1) ◽  
pp. 59-67 ◽  
Author(s):  
Raquel Alveirinho Correia ◽  
Maria João Seabra-Santos ◽  
Paula Campos Pinto ◽  
Ivan Brown
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Family Quality Of Life

Child, Family, and Early Intervention Characteristics Related to Family Quality of Life in Spain

2018 ◽  
Vol 41 (1) ◽  
pp. 44-61 ◽  
Author(s):  
Pau García-Grau ◽  
R. A. McWilliam ◽  
Gabriel Martínez-Rico ◽  
Catalina P. Morales-Murillo
Keyword(s):  
Quality Of Life ◽  
Early Intervention ◽  
Implementation Process ◽  
Family Quality Of Life ◽  
Child Functioning ◽  
Individual Family ◽  
Family Centeredness ◽  
Families With Children ◽  
Family Centered

Family quality of life (FQoL) is considered one of the aims of early intervention (EI) services and a good indicator of service quality. Families were recruited from EI centers in 12 of 17 communities (states) in Spain. This study describes the FQoL of 250 Spanish families with children aged 0 to 6 years in EI services during a family-centered implementation process. We used an EI-specific FQoL scale that includes families’ perception of their child’s functioning as one factor. We also describe the relationships among individual, family, and service variables as well as FQoL. Type of disability, socioeconomic status, and family-centered practices impacted Child Functioning, Overall Life Situation, and Access to Information and Services factors, respectively. Fewer number of professionals involved was related with greater perception of child’s functionality. Family-centeredness, type of family, and type of disability were the most influencing variables for the Total score. Implications for practice are discussed.

scholarly journals The Spanish Family Quality of Life Scales under and over 18 Years Old: Psychometric Properties and Families’ Perceptions

2020 ◽  
Vol 17 (21) ◽  
pp. 7808
Author(s):  
Anna Balcells-Balcells ◽  
Joana M. Mas ◽  
Natasha Baqués ◽  
Cecilia Simón ◽  
Simón García-Ventura
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Psychometric Properties ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Validity And Reliability ◽  
Confirmatory Factor ◽  
Spanish Family ◽  
Families With Children

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E < 18 and the CdVF-E >18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER < 18 and the CdVF-ER > 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services.

Healthy Athletes Program as a chance for a good quality of life of persons with intellectual disability and their families in the context of health and pro-health activities

2016 ◽  
Vol 24 (1) ◽  
pp. 19-30
Author(s):  
Anna Nadolska ◽  
Piotr Bejster
Keyword(s):  
Quality Of Life ◽  
Life Expectancy ◽  
Intellectual Disabilities ◽  
Health State ◽  
Special Olympics ◽  
Average Life Expectancy ◽  
Persons With Disabilities ◽  
People With Intellectual Disabilities ◽  
Families With Children

Abstract Background: One of the consequences of improperly extending the process of socialization is incorrect health education and thus, different structure of the behaviors associated with taking care of their own health. More difficult socio-economic situation of families with children with intellectual disabilities may not adequately protect the needs of family members (especially children’s) associated with health. Up to 1/3 of the cases of people with intellectual disabilities of poorer health state can result from lower socio-economic position (Emerson and Hatton, 2007). Educational failure, typical for families of children and young people with intellectual disabilities (especially mild) can result in the children not acquiring appropriate behaviors, important for health. If these behaviors are missing, consequently, can be expected to accelerate the deterioration of health. The health status of people with intellectual disabilities is worse than the state of health in the general population (Allerton, Welch, Emerson, 2011; Tample et al., 2006). The most serious consequence of the poorer health of people with intellectual disabilities is a higher mortality rate (Krahn et al, 2006). The average life expectancy of people with intellectual disabilities is 66 (excluding people with Down syndrome whose life expectancy is even shorter), and so more than 10 years shorter than of people. In so-called intellectual norm! Bearing in mind that access to the highest standard of health care for all people with disabilities is a law that was adopted on 13 December 2006 under the UN Convention on the Rights of Persons with Disabilities, Special Olympics Poland have taken the initiative leading to beneficial changes in quality of life for the players and their families in the context of health and modeling appropriate health behavior through the implementation of the Health Programme, which includes the two related projects: Healthy Athletes and Healthy Special Olympics Community.

scholarly journals State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

2020 ◽  
Vol 17 (19) ◽  
pp. 7220
Author(s):  
Carmen Francisco Mora ◽  
Alba Ibáñez ◽  
Anna Balcells-Balcells
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Family Relationships ◽  
Family Quality Of Life ◽  
Early Care ◽  
Quality Of Family Life ◽  
Bibliographic Search ◽  
Families With Children ◽  
Age Range

Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted.

Quality of Life of Parents of Children with Intellectual Disabilities in Croatia

2017 ◽  
Vol 7 (2) ◽  
pp. 43-48 ◽  
Author(s):  
Anja Kovac Misura ◽  
Haris Memisevic
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Educational Status ◽  
Control Group ◽  
Family Quality Of Life ◽  
Significant Difference ◽  
Survey Results ◽  
Children With Intellectual Disability

Abstract The goal of the present study was to examine the quality of life (QOL) of parents of children with intellectual disability. An additional goal was to examine the effects of gender and educational status on the QOL of these parents. The sample for this study consisted of 50 parents of children with intellectual disabilities and 50 parents of children without disabilities as a control group. As A measure of QOL, we used Family Quality of Life Survey. Results have shown that there is a statistically significant difference between the perceived QOL of parents of children with intellectual disabilities and parents of typically developing children. The effects of gender and educational status on QOL of parents of children with intellectual disabilities were also statistically significant. However, there were no interaction effects of gender and educational status on the QOL. Given the lower QOL of parents of children with intellectual disability, it is important to provide them with support programs in order to improve their QOL.

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