Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia

Čagran, Branka; Schmidt, Majda; Brown, Ivan

doi:10.1111/j.1365-2788.2011.01400.x

Cited by 29 publications

(30 citation statements)

References 15 publications

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“…This study found that the highest perception of satisfaction was in the Family Interaction domain, which is supported by several other studies (BalcellsBalcells et al, 2010;Park, 2001;Clark et al, 2011;Cagran et al, 2011;Brown et al, 2003;Brown, Petrowski, et al, 2010;Jokinen, 2008). The lowest satisfaction was in the domain of Physical/Material WellBeing, which is also supported by several other studies (Tang et al, 2005;Clark et al, 2011;Cagran et al, 2011;Svraka et al, 2011). Likely, it was the financial struggle of Turkish families who have children with ID and autism that caused families in this study to have lower perceptions of satisfaction with Physical/Material WellBeing, as compared to other domains.…”

Section: Summary Of Major Results and Connectionsupporting

confidence: 89%

“…Regarding domains, a consistent finding across studies has been the highest FQOL score for the domain of Family Relationships (Brown, Anand, Isaacs, Baum, & Fung, 2003;Brown, Petrowski, et al, 2010;Cagran, Schmidt, & Brown, 2011;Clark, Brown, & Karrapaya, 2011) based on data from Canada, Malaysia, and Slovenia. A consistent pattern across Canada, Korea, Malaysia, and Bosnia-Herzegovima data has been the finding of the Financial/Physical/Material Well-Being domain having the lowest FQOL score (Cagran et al, 2011;Clark et al, 2011;Svraka et al, 2011;Tang et al, 2005). Two additional domains receiving low scores are Receiving Support From Others and Receiving DisabilityRelated Services (Brown, Petrowski, et al, 2010;Brown et al, 2003).…”

mentioning

confidence: 86%

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Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism

Meral

Cavkaytar

Turnbull

et al. 2013

Research and Practice for Persons with Severe Disabilities

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This study examined family quality of life (FQOL) of Turkish families who have children with intellectual disabilities (ID) and autism. To research the perceptions of FQOL and relevant predictive relationships, data were gathered from 3,009 families who have children with ID and autism. The data were collected by using a Socio-demographic Family Information Form, Beach Center Family Quality of Life Scale, and the Family Support Scale. The FQOL and subdomain perceptions of families who have children with ID and autism were slightly above a moderate level; the highest perceptions were in the Family Interaction domain, and the lowest perceptions were in the Physical/Material Well-Being domain. We computed significant positive correlations between overall FQOL perception and family social support domains as well as between overall FQOL perception and sociodemographic variables. In the prediction of overall FQOL perception, the variable that mostly explained total variance was emotional support. For the covariates of care support, household/income, information support, socioeconomic status, age of child, type of disability, and affiliation support, the ability to predict FQOL was weak. Conversely, age of mothers, employment status of mothers, and material support domain were not important predictors in FQOL.

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Section: Summary Of Major Results and Connectionsupporting

confidence: 89%

mentioning

confidence: 86%

Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism

Meral

Cavkaytar

Turnbull

et al. 2013

Research and Practice for Persons with Severe Disabilities

View full text Add to dashboard Cite

show abstract

“…Dez dos estudos apresentados tiveram como objetivo a validação da referida escala nos seguintes países: Bósnia-Herzegovina (Svraka, Loga & Brown, 2011), Bélgica (Steel, Poppe, Vandevelde, Van Hove, & Claes, 2011), Itália (Bertelli, Bianco, Rossi, Scuticchio, & Brown, 2011), Eslovénia (Čagran, Schmidt, & Brown, 2011), Israel (Neikrug, Roth, & Judes, 2011), Malásia (Clark, Brown, & Karrapaya, 2012), Nigéria (Ajuwon & Brown, 2012), Austrália (Rillotta, Kirby, Shearer, & Nettelbeck, 2012), EUA (Samuel, Hobden, LeRoy, & Lacey, 2012) e Polónia (Ho et al 2013). Em todos esses estudos, recorreuse ao FQOLS-2006, com algumas especificações, quer na metodologia, quer na análise dos resultados, que se descrevem seguidamente.…”

Section: Artigos Empíricos Com Base No Fqols-2006unclassified

“…Em alguns estudos, apresentam-se correlações entre dimensões e entre domínios (Bertelli et al, 2011), entre domínios para cada dimensão (Clark et al, 2012) e apenas entre dimensões (Ajuwon & Brown, 2012). Existe, também, uma preocupação em complementar os dados quantitativos com informação de natureza qualitativa, quer seja através dos dados recolhidos com o questionário (Čagran et al, 2011;Ajuwon & Brown, 2012;Rillotta et al, 2012), quer através de uma entrevista (Steel et al, 2011). Apenas um dos estudos anteriormente referidos apresenta os índices de consistência interna , sendo os valores do coeficiente alfa de Cronbach baixos a moderados (Importância = 0,24; Realização = 0,69; Oportunidades = 0,79; Estabilidade = 0,45; Satisfação = 0,82; Iniciativa = 0,48).…”

Section: Artigos Empíricos Com Base No Fqols-2006unclassified

Qualidade de Vida Familiar na Deficiência Intelectual: Revisão Sistemática de Estudos

Correia

Seabra‐Santos

2018

Psic.: Teor. e Pesq.

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RESUMO -A qualidade de vida familiar (QdVF) em famílias de pessoas com deficiência intelectual (DI) tem interessado investigadores, sugerindo potencialidades em termos de avaliação e intervenção. O presente artigo realizou uma revisão sistemática dos estudos empíricos que analisam a QdVF em famílias de pessoas com DI. Efetuou-se uma pesquisa bibliográfica num portal de bases de dados e recorreu-se a critérios de inclusão previamente definidos. Do total de 32 estudos selecionados, 15 recorreram ao instrumento FQOLS-2006, focando-se na análise das dimensões e domínios da mesma; 11 ao Beach Center FQOL Survey, relacionando o constructo com diversas variáveis; e seis a outras formas de avaliação, essencialmente qualitativas. Assim, a QdVFABSTRACT -Family quality of life (FQoL) for families with members who have an intellectual disability (ID) has recently captured the interest of researchers and demonstrated potential for evaluation and intervention. This paper intends to revise systematically empirical studies that analyze FQoL in families with members having ID. A bibliographic search was carried out in a database and previously defined inclusion criteria were used. From a total of 32 studies, 15 used the FQOLS-2006 that focused on the analysis of their dimensions and domains, 11 the Beach Center FQOL Survey that related the construct to other individual and family variables and six other methods to evaluate FQoL. Thus, FQoL is relevant to understand and intervene with families of persons with ID.

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“…El peregrinaje en busca de un diagnóstico fiable es una etapa difícil de superar, no sólo porque en ocasiones puede durar mucho tiempo sino por el desgaste físico, psicológico y emocional que genera en los padres; es importante que éstos tengan el diagnóstico de su hijo lo antes posible, ya que conocerlo puede ser el principio de la aceptación de su realidad y de permitirse comenzar a actuar (Cagran, Schmidt & Brown, 2011;Martínez & Bilbao, 2008). La poca claridad frente al diagnóstico, así como el acompañamiento que se hace a los padres, resulta crucial para asumir la discapacidad en forma integral; al tener un diagnóstico fiable las familias logran albergar deseos positivos en relación con la discapacidad.…”

Section: Introductionunclassified

Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar.

Amaya

Tomasini

Rueda

et al. 2014

Acta. Colomb. Psicol.

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El propósito del estudio es establecer los conocimientos, la dinámica familiar y comunitaria de madres de hijos con discapacidad que sirvan de base para la instrumentación de programas de intervención. Participaron 42 madres con edades entre 19 y 49 años (M = 31.14) de un Centro de Rehabilitación Infantil perteneciente a la Secretaría de la Defensa Nacional en México. Se utilizó una guía de entrevista semi-estructurada para explorar los conocimientos, la dinámica familiar y comunitaria de las familias. Las madres reportaron que no recibieron preparación de cómo tratar a sus hijos; sin embargo, ellas consideran la importancia de adquirir conocimientos especializados para entender y tratar al menor. Las madres que no tienen los conocimientos necesarios sobre la discapacidad de su hijo no son capaces de entender ni aceptar la condición del niño, conllevando a la negación del problema, inconformidad, culpa y depresión. Se observó en el estudio que una adecuada preparación de la madre después del nacimiento de su hijo, acerca de la discapacidad, puede proveer una mejor interacción y funcionamiento de estas familias. Palabras Clave: Discapacidad, Conocimientos de discapacidad, Dinámica Familiar, Dinámica comunitaria, Madres de hijos con discapacidad. CHARACTERIZATION OF THE KNOWLEDGE OF MOTHERS CONCERNING THEIR CHILDREN´S DISABILITY AND THE RELATION WITH THE FAMILY DYNAMICS AbstractThe purpose of this study is to enquire about the knowledge, as well as about the family and community dynamics of mothers of children with disabilities, as a basis to implement intervention programs. Participants were 42 mothers aged between 19 and 49 years (M= 31.14) who attended a Children´s Rehabilitation Center belonging to the National Defense Secretariat in Mexico [SEDENA, for its Spanish acronym]. Semi-structured interviews were used to assess the mother's knowledge on the disability of the child and the family and community dynamics. Mothers reported receiving no training on how to treat their children, though they considered the importance of acquiring expertise to understand and treat the child. Mothers who do not have the necessary knowledge about their child's disability are not able to understand or accept the child's condition, leading to a denial of the problem, dissatisfaction, guilt and depression. It was noted in the study that proper preparation of the mother after the birth of her child, in terms of the disability can provide a better interaction and functioning of these families.

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Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia

Cited by 29 publications

References 15 publications

Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism

Family Quality of Life of Turkish Families Who Have Children with Intellectual Disabilities and Autism

Qualidade de Vida Familiar na Deficiência Intelectual: Revisão Sistemática de Estudos

Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar.

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