Family functioning in families with a child with Down syndrome: a mixed methods approach

Povee, Kate; Roberts, Lynne D.; Bourke, Jenny; Leonard, Helen

doi:10.1111/j.1365-2788.2012.01561.x

Cited by 83 publications

(85 citation statements)

References 39 publications

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“…Relatedly, the positive impact that children with DS have on their families' lives was clearly articulated by participants in this study, as in previous work 19,27,[30][31][32] . Together with data from several studies showing that individuals with DS are happy with their lives and have high self-esteem 33,34 , this undermines the assumption of individual suffering that is foundational to the medical model of disability from which the pursuit of a cure for DS has evolved 20 .…”

Section: Discussionsupporting

confidence: 68%

“…Together with data from several studies showing that individuals with DS are happy with their lives and have high self-esteem 33,34 , this undermines the assumption of individual suffering that is foundational to the medical model of disability from which the pursuit of a cure for DS has evolved 20 . Though families that include a child with DS face unique challenges, including increased emotional, physical, and financial demands that can have a profound impact on the functioning and well-being of the family 32,35,36 , parents in this study asserted that there should be a focus on changing negative societal attitudes and increasing social infrastructure to properly support individuals with DS and their families, rather than trying to change individuals with DS. This position is solidly in line with the social model of disability, which, in contrast to the medical model, suggests that barriers in society contribute significantly to difficulties experienced by those with DS 27 .…”

Section: Discussionmentioning

confidence: 93%

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A ‘cure’ for Down syndrome: what do parents want?

et al. 2014

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Recent advancements in molecular genetics raise the possibility that therapeutics or a "cure" for Down syndrome (DS) may become available. However, there are no data regarding how parents of children with DS perceive the possibility of mitigating specific manifestations such as the intellectual disability (ID) associated with DS, or curing the condition entirely. To explore these issues, we distributed a questionnaire to members of the Lower Mainland Down Syndrome Society in British Columbia, Canada. Questionnaires were completed by 101 parents (response rate=41%). A majority (61%) viewed the possibility of reversing ID in DS positively, but only 41% said that they would "cure" their child of DS if it were possible. Twenty-seven percent of respondents said they would not "cure" their child, and 32% were unsure if they would "cure" their child. The most commonly cited motivation for opting for a "cure" was to increase their child's independence. However, parental attitudes' towards a "cure" for DS were complex, affected by ethical issues, perceived societal values, and pragmatic factors such as the age of the individual and long-term care-giving burden. These findings could be used by healthcare professionals supporting families who include a member with DS and to direct future research.

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Section: Discussionsupporting

confidence: 68%

Section: Discussionmentioning

confidence: 93%

A ‘cure’ for Down syndrome: what do parents want?

et al. 2014

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“…Portanto, a deficiência da criança não parece constituir um empecilho ao ajustamento do casal, conforme apontado pela literatura (Bristol et al, 1988;Carr, 1988;Da Silva, 2011;Povee et al, 2012;Stoneman et al, 2006;Wieland & Baker, 2010). Isso significa que ambos os grupos podem apresentar um ajustamento conjugal bom ou ruim, independentemente de se ter uma criança com deficiência intelectual na família.…”

Section: Discussionunclassified

“…O ajustamento diádico, por sua vez, foi o conceito mais analisado nas pesquisas sobre conjugalidade até meados da década de 90 (Mossman et al, 2006 (Povee et al, 2012). No entanto, os próprios autores destacaram que esse estudo foi realizado com uma amostra australiana, país onde as famílias possuem altos níveis de apoio e tem sido relatada grande satisfação com os serviços prestados a elas.…”

Section: Introductionunclassified

Ajustamento Conjugal: Comparação entre Casais com e sem Filhos com Deficiência Intelectual

2015

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ResumoO presente estudo visa comparar o ajustamento diádico entre casais com um filho com deficiência intelectual e casais com filhos com desenvolvimento típico, identificando as associações dessa variável com características do funcionamento do sistema familiar. Participaram do estudo 101 famílias, sendo 80 com filhos com desenvolvimento típico e 21 com um dos filhos com deficiência intelectual. Os instrumentos utilizados foram: Questionário de Caracterização do Sistema Familiar e a Escala de Ajustamento Diádico -EAD (DAS -Dyadic Adjustment Scale). Os resultados mostram que o relacionamento conjugal, em ambos os grupos, é bom e não há diferenças significativas quanto ao ajustamento diádico entre os casais. A análise das dimensões da EAD mostra correlação significativa, positiva e moderada, apenas para Expressão de Afeto. Os dados indicam que a deficiência do filho não constitui empecilho ao ajustamento diádico do casal, fato que deveria ser melhor investigado em famílias brasileiras. Palavras-chave: Família, ajustamento diádico, conflito conjugal, deficiência intelectual, desenvolvimento típico. Marital Adjustment: Comparison between Couples with Children with and without Intellectual Disability AbstractThis study aims to compare the dyadic adjustment between couples with a child with intellectual disabilities and couples with children with typical development identifying the associations of this variable with characteristics of the functioning of the family system. The study included 101 families, 80 of them with children with typical development and 21 of them with one of the children with intellectual disabilities. The instruments used were Family Characteristics Questionnaire and Dyadic Adjustment Scale -DAS. The results show that the marital relationship, in both groups, is good and there are no significant differences regarding the dyadic adjustment between couples. The analysis of the dimensions of the DAS shows significant correlation, positive and moderate, but only in relation to the variable Affect Expression. The data indicate that the child's disability is not a hindrance to the couple dyadic adjustment, a fact that should be further investigated in Brazilian families. Keywords: Family, dyadic adjustment, marital conflict, intellectual disability, typical development. Ajuste Conyugal: Comparación entre Parejas con y sin Hijos con Discapacidad Intelectual ResumenEl presente estudio objetiva comparar el ajuste conyugal entre parejas con un hijo con discapacidad intelectual y parejas con hijos con desarrollo típico, identificando las asociaciones de esta variable con las características del funcionamiento del sistema familiar. Participaron 101 familias, siendo 80 de ellas con hijos con desarrollo típico y 21 con uno de los hijos con discapacidad intelectual. Se utilizaron el Cuestionario de Caracterización del Sistema Familiar y la Escala de Ajuste Conyugal -EAC (DAS--Dyadic Adjustment Scale). Los resultados muestran que la relación conyugal, en ambos grupos, es buena y no hay diferencias significativ...

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“…Aliado a esse aspecto, é comum que os papéis exercidos pelos irmãos sejam assimétricos, sendo que o irmão com DT tende a assumir comportamentos diretivos e de supervisão em relação a seu irmão com SD (Pereira-Silva, 2003). Além disso, há evidências de que os irmãos com DT se envolvem, direta e indiretamente, nas atividades de cuidado do irmão com DI, não havendo dados de que eles sejam significativamente prejudicados em suas atividades sociais, lúdicas e escolares (Floyd, Costigan, & Richardson, 2016, Nunes, 2006Povee, Roberts, Bourke, & Leonard, 2012;Shivers, & Dykens, 2017;Stoneman et al, 1991 (Gomes, & Bosa, 2004;Hannah, & Midlarsky, 2005;Petean, & Suguihura, 2005;Soares, Franco, & Carvalho, 2009). Todavia, há investigações anteriores que não encontraram evidências que comprovassem essa diferença (Abramovitch et al, 1987;.…”

Section: Introductionunclassified

Relação Fraternal e Síndrome de Down: um Estudo Comparativo

Pereira-Silva

Crolman

Almeida

et al. 2017

Psicol. cienc. prof.

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Resumo: As relações fraternais em famílias com filhos com e sem síndrome de Down (SD) têm sido pouco investigadas no Brasil. Este estudo descreve o funcionamento familiar e compara a relação entre irmãos em dois tipos de famílias, identificando similaridades e diferenças nos relatos dos genitores. Participaram do estudo oito famílias compostas por mãe, pai e dois filhos, sendo que em quatro delas havia somente membros com desenvolvimento típico (DT) e nas demais havia um membro com SD, totalizando oito díades de irmãos, de ambos os sexos com idades entre cinco a 15 anos. Utilizou-se o Questionário de Caracterização do Sistema Familiar, que foi respondido pelas mães, e entrevistas semiestruturadas, cujos genitores responderam. Os resultados indicam similaridades na rotina diária das famílias, sendo as mães as principais responsáveis pelas tarefas domésticas e cuidados com os filhos, em ambos os tipos de famílias. As relações fraternais foram descritas, pelos pais e mães, como Mistas e Amistosas em ambos os tipos de famílias, caracterizando, portanto, como sendo positivas. O filho com DT foi indicado como líder na maioria das famílias com um membro com SD, enquanto nas famílias com as díades com DT, a maioria dos genitores indicou o filho mais velho. Os dados convergem com os da literatura acerca do fato de que a relação entre a díade de irmãos SD-DT tende a ser positiva, com características de amistosidade mais do que conflitos. Os dados encontrados sugerem coerência com os da literatura atual. Palavras-chave:Relação Fraternal, Síndrome de Down, Irmãos. Sibling Relationship and Down Syndrome: A Comparative StudyAbstract: The sibling relationships in families with children with and without Down syndrome (DS) have been poorly investigated in Brazil. This study describes family functioning and compares the relationship between siblings in two types of families, identifying similarities and differences in the reports of the parents. Eight families (n = 8) consisting of mother, father and two children participated on the study. In four of them, there were only typically developing (TD) members and in the others there was a member with DS, with a total amount of eight dyads of siblings of both sexes, ranging from five to 15 years old. The Family System Characteristics Questionnaire was answered by the mothers and semi-structured interviews were responded by the parents. The results indicated similarities in the daily routine of the families, in which mothers are primarily responsible for household chores and child care in both types of families. Sibling relations were described by fathers and mothers as Mixed and Friendly in both types of families, therefore, characterizing them as positive. The child with TD was indicated as a leader in most families with a member with DS, and in families with TD dyads, most parents indicated their eldest son. Data converge with those in the literature about the fact that the relationship between the dyad of DS-TD siblings tends to be positive with characteristics of friendship rather...

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Family functioning in families with a child with Down syndrome: a mixed methods approach

Abstract: This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family.

Cited by 83 publications

References 39 publications

A ‘cure’ for Down syndrome: what do parents want?

A ‘cure’ for Down syndrome: what do parents want?

Ajustamento Conjugal: Comparação entre Casais com e sem Filhos com Deficiência Intelectual

Relação Fraternal e Síndrome de Down: um Estudo Comparativo

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