FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS

FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS

ABSTRACT Objective: to analyze the family appraisal about the Down syndrome diagnosis. Method: this is a qualitative, exploratory study, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation. Semi-structured interviews were conducted with 20 Brazilian parents of children with Down syndrome (19 mothers and 1 father). The data were collected between February and June 2016 and were analyzed using a directed content analysis approach and MAXQDA ©, version 12.2.0 software was used to help manage the data. Results: the moment of suspected or confirmed diagnosis of Down syndrome occurred predominantly in the postnatal period. Parents viewed the experience of being informed of their child’s diagnosis as a negative experience and were mostly dissatisfied with how professionals informed them. Parents reported that, over time, their view of having a child with Down syndrome became more positive. Conclusion: the family's perception of how they were informed of their child’s diagnosis plays a critical role in the family adaptation process and may ultimately contribute to how well they adapt. Findings from this study will help in the identification of key competencies needed by health professionals who engage in informing families about their child's diagnosis of Down syndrome.

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Main Authors: Schettini,Débora Lara Couto, Riper,Marcia Leigh Van, Duarte,Elysângela Dittz
Format: Digital revista
Language:English
Published: Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem 2020
Online Access:http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072020000100384
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spelling oai:scielo:S0104-070720200001003842021-01-12FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSISSchettini,Débora Lara CoutoRiper,Marcia Leigh VanDuarte,Elysângela Dittz Down Syndrome Diagnosis Family Child Psychological Adaptation ABSTRACT Objective: to analyze the family appraisal about the Down syndrome diagnosis. Method: this is a qualitative, exploratory study, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation. Semi-structured interviews were conducted with 20 Brazilian parents of children with Down syndrome (19 mothers and 1 father). The data were collected between February and June 2016 and were analyzed using a directed content analysis approach and MAXQDA ©, version 12.2.0 software was used to help manage the data. Results: the moment of suspected or confirmed diagnosis of Down syndrome occurred predominantly in the postnatal period. Parents viewed the experience of being informed of their child’s diagnosis as a negative experience and were mostly dissatisfied with how professionals informed them. Parents reported that, over time, their view of having a child with Down syndrome became more positive. Conclusion: the family's perception of how they were informed of their child’s diagnosis plays a critical role in the family adaptation process and may ultimately contribute to how well they adapt. Findings from this study will help in the identification of key competencies needed by health professionals who engage in informing families about their child's diagnosis of Down syndrome.info:eu-repo/semantics/openAccessUniversidade Federal de Santa Catarina, Programa de Pós Graduação em EnfermagemTexto & Contexto - Enfermagem v.29 20202020-01-01info:eu-repo/semantics/articletext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072020000100384en10.1590/1980-265x-tce-2019-0188
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country Brasil
countrycode BR
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databasecode rev-scielo-br
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region America del Sur
libraryname SciELO
language English
format Digital
author Schettini,Débora Lara Couto
Riper,Marcia Leigh Van
Duarte,Elysângela Dittz
spellingShingle Schettini,Débora Lara Couto
Riper,Marcia Leigh Van
Duarte,Elysângela Dittz
FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
author_facet Schettini,Débora Lara Couto
Riper,Marcia Leigh Van
Duarte,Elysângela Dittz
author_sort Schettini,Débora Lara Couto
title FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
title_short FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
title_full FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
title_fullStr FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
title_full_unstemmed FAMILY APPRAISAL OF THE DOWN SYNDROME DIAGNOSIS
title_sort family appraisal of the down syndrome diagnosis
description ABSTRACT Objective: to analyze the family appraisal about the Down syndrome diagnosis. Method: this is a qualitative, exploratory study, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation. Semi-structured interviews were conducted with 20 Brazilian parents of children with Down syndrome (19 mothers and 1 father). The data were collected between February and June 2016 and were analyzed using a directed content analysis approach and MAXQDA ©, version 12.2.0 software was used to help manage the data. Results: the moment of suspected or confirmed diagnosis of Down syndrome occurred predominantly in the postnatal period. Parents viewed the experience of being informed of their child’s diagnosis as a negative experience and were mostly dissatisfied with how professionals informed them. Parents reported that, over time, their view of having a child with Down syndrome became more positive. Conclusion: the family's perception of how they were informed of their child’s diagnosis plays a critical role in the family adaptation process and may ultimately contribute to how well they adapt. Findings from this study will help in the identification of key competencies needed by health professionals who engage in informing families about their child's diagnosis of Down syndrome.
publisher Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem
publishDate 2020
url http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072020000100384
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