scholarly journals The Relation Between Family Quality of Life and the Family‐Centered Approach in Families With Children With an Intellectual Disability

2019 ◽  
Vol 16 (4) ◽  
pp. 296-311 ◽  
Author(s):  
Lien Vanderkerken ◽  
Mieke Heyvaert ◽  
Patrick Onghena ◽  
Bea Maes
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Family Quality Of Life ◽  
The Family ◽  
Families With Children ◽  
Family Centered

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 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.

A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability

2018 ◽  
Vol 32 (2) ◽  
pp. 413-426 ◽  
Author(s):  
Stephania A. Rodrigues ◽  
Bruno J. B. Fontanella ◽  
Lucimar R. S. de Avó ◽  
Carla M. R. Germano ◽  
Débora G. Melo
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Qualitative Study ◽  
Families With Children

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.

scholarly journals Family-centered practices in home-based support for families with children with an intellectual disability: Judgments of parents and professionals

2019 ◽  
pp. 174462951989774 ◽  
Author(s):  
Lien Vanderkerken ◽  
Mieke Heyvaert ◽  
Patrick Onghena ◽  
Bea Maes
Keyword(s):  
Intellectual Disability ◽  
Educational Level ◽  
Home Based ◽  
The Family ◽  
Parental Autonomy ◽  
Meaning Interpretation ◽  
Families With Children ◽  
Family Centered

Background: The realization of the family-centered approach (FCA) in home-based support (HBS) for families with children with an intellectual disability (ID) in Flanders was investigated, and parents’ and family workers’ perspectives were compared. The relation between parents’ educational level, the family worker’s education, and his/her experience in HBS; and parents’ and family workers’ judgments on the realization of the FCA was considered. Method: Parents ( N = 58 families) and family workers ( N = 46) completed the helpgiving practices scale and the enabling practices scale. Results: The FCA was largely present, parents rated its realization higher than family workers. Considering family workers’ answers, parents’ educational level appeared an important factor for parental autonomy. Conclusions: The study confirms recent research on the realization of the FCA. Including different perspectives, a nuanced view on the realization of the FCA was obtained. Further research on the concrete meaning, interpretation, and elaboration of the FCA is needed.

Confirmatory Factor Analysis of a Family Quality of Life Scale for Taiwanese Families of Children With Intellectual Disability/Developmental Delay

2017 ◽  
Vol 55 (2) ◽  
pp. 57-71 ◽  
Author(s):  
Chun-Yu Chiu ◽  
Hyojeong Seo ◽  
Ann P. Turnbull ◽  
Jean Ann Summers
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Developmental Delay ◽  
Reliability And Validity ◽  
Family Quality Of Life ◽  
Family Outcomes ◽  
Quality Of Life Scale ◽  
Confirmatory Factor ◽  
Life Scale

Abstract The Beach Center Family Quality of Life Scale is an internationally validated instrument for measuring family outcomes. To revise the scale for better alignment with the Family Quality of Life theory, the authors excluded non-outcome items in this revision. In this study, we examined reliability and validity of the revised scale (i.e., the FQoL Scale-21) and its scores for Taiwanese families of children and youth with intellectual disability and developmental delay (age 0–18). Results from 400 Taiwanese respondents suggested that the FQoL Scale-21 has the potential to be used as an indicator of positive outcomes in intervention evaluation, policy making, and service delivery.

scholarly journals FAMILY QUALITY OF LIFE IN PRACTICE: A PRACTICAL APPLICATION OF THE FQOL-2006 SURVEY

2018 ◽  
Vol 9 (4) ◽  
pp. 40-48
Author(s):  
Kierstyn Butler
Keyword(s):  
Quality Of Life ◽  
Service Providers ◽  
Family Quality Of Life ◽  
Practical Application ◽  
The Family ◽  
Master's Thesis ◽  
Research Opportunity ◽  
New Research ◽  
The Impact

As families are increasingly recognized as the primary caregivers for their family members with disabilities, family quality of life (FQOL) research has focused on the impact of disability within the family. This field of research seeks to gain an understanding of the complex challenges and successes families have, with the goal of assisting families in expanding their FQOL. To accomplish this task, the FQOL survey (FQOL-2006) was created. Developed in 2000 and later revised, the FQOL-2006 survey has been used in over 20 countries to explore the perceptions of families, parents, and main caregivers of individuals with intellectual and developmental disabilities. While there has been considerable research using the FQOL-2006 survey, there is limited research that focuses on integrating the survey into practice. This article discusses a possible application of the survey in practical contexts by reflecting on some of the qualitative data collected from my recent FQOL master’s thesis study. Specifically, the article highlights the mutual benefits that service providers and families could receive by integrating the FQOL-2006 survey into service models, as it could allow professionals to establish a framework for assessing each client-family’s overall quality of life, including their greatest supports, strengths, challenges, and needs. This application provides a new research opportunity for the FQOL field for both researchers and professionals.

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.

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