Having a son or daughter with Down syndrome: Perspectives from mothers and fathers

Skotko, Brian G.; Levine, Susan P.; Goldstein, Richard D.

doi:10.1002/ajmg.a.34293

Cited by 148 publications

(149 citation statements)

References 60 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: 69%

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: 69%

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

et al. 2014

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“…However, previous research has demonstrated that despite the length of time since diagnosis for some parents, their recollections of the process of diagnosis were very strong; these have been described as 'flash bulb memories' 40 and noted in other studies. 41,42 All of the mothers who were interviewed were recruited through a pre-existing database. This database was created when mothers who were interested in KS research contacted a senior researcher.…”

Section: Discussionmentioning

confidence: 99%

A qualitative exploration of mothers’ and fathers’ experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis

et al. 2013

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Klinefelter syndrome (KS) is a common genetic condition that is currently under-diagnosed. The phenotype is broad, with physical, medical and psychosocial features ranging from mild to severe. When a child is diagnosed with KS, the parents may spend months to years searching for a diagnosis. This study used a qualitative methods approach to explore parents' experiences of having a child with KS and receiving a diagnosis. Fifteen semistructured one-to-one in-depth interviews were conducted to explore their experiences and views. The interviews were then transcribed, coded and thematically analysed. The interviews revealed that parents had diverse experiences related to: the timing of the diagnosis of their child and reasons why their child was investigated for KS; the information that was provided at the time of diagnosis; the supports that were available and the concerns that parents held for the future of their child. The conclusions from this study were that parents' experiences of having a child with KS and receiving a diagnosis were complex and multifaceted. This experience was shaped by the timing of when the diagnosis was received, who provided the diagnosis, what information was provided from health-care professionals and that which parents may have encountered on the internet. The long-term experiences for parents were also impacted by the level of support they received. These findings have implications for the process by which KS is recognised by the health-care community and supports available for families.

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“…Tener un hijo o una hija con síndrome de Down ha sido identificado como una contecimiento estresante en la literatura. Así, Skotko et al (2011a) investigaron las actitudes de una muestra de 2.044 padres de niños con síndrome de Down. El 99% de los padres dijeron querer a su hijo, el 97% se sentían orgullosos de ellos, el 79 % decían haber mejorado su concepción de la vida a causa de su hijo, el 5% se avergonzaban de su hijo y el 4% mostraba pesar por tenerlo.…”

Section: Antecedentesunclassified

Actitudes Hacia La Discapacidad Y Redes Sociales: Algunas Evidencias

Tomşa¹,

Lucas

Jenaro

et al. 2016

Revista INFAD de Psicología

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Una de las vías crecientemente utilizadas para transmitir información y por tanto para modelar conductas y actitudes es Internet y más concretamente, herramientas como Youtube o Twitter. Este estudio analiza las actitudes hacia las personas con síndrome de Down tras realizar un análisis de contenido de los comentarios sobre dos vídeos sobre estas personas. Uno de los videos se ha realizado en España y el otro en Rumanía. Las respuestas se codificaron utilizando cinco dimensiones de factores identificados en estudios previos sobre actitudes hacia las personas con discapacidad: visión positiva, implicación personal, Derechos, Capacidades y Estereotipos. Los resultados revelaron la existencia de actitudes que van desde la aceptación y la reivindicación de sus derechos a la sobreprotección y las actitudes estereotipadas. Se presentan los resultados y se ofrecen sugerencias para futuras investigaciones.Palabras Clave: evaluación, actitudes, síndrome de down, internet, análisis de contenido

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Having a son or daughter with Down syndrome: Perspectives from mothers and fathers

Cited by 148 publications

References 60 publications

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

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

A qualitative exploration of mothers’ and fathers’ experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis

Actitudes Hacia La Discapacidad Y Redes Sociales: Algunas Evidencias

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