Challenging and Facilitating Factors When Coping with the News of a Newborn’s Down Syndrome Diagnosis: Perceptions of Activist Israeli Mothers

2021 ◽  
pp. 1-10
Author(s):  
Adi Finkelstein ◽  
Yaacov G. Bachner ◽  
Elkie Stein ◽  
Liron Benisti ◽  
Ariel Tenenbaum
2011 ◽  
Vol 36 (5) ◽  
pp. 3205-3213 ◽  
Author(s):  
Şafak Saraydemir ◽  
Necmi Taşpınar ◽  
Osman Eroğul ◽  
Hülya Kayserili ◽  
Nuriye Dinçkan

Author(s):  
Teresa Santin

Giving birth to a child with Down syndrome is a choice and one that should be well-informed. It has become a trend for expectant parents to abort fetuses with Down syndrome before fully weighing their options.[1] Expectant parents may automatically assume that an individual with Down syndrome will not lead a worthwhile life and that raising the child will pose too many challenges for them.[2] In order to minimize the number of fetuses with Down syndrome that are being aborted (which may be greater than 90%),[3] expectant parents need access to up-to-date, comprehensive information about all aspects of raising a child with Down syndrome, including the many positive aspects. Whatever decision a parent makes regarding raising a child with Giving birth to a child with Down syndrome is a choice and one that should be well-informed. It has become a trend for expectant parents to abort fetuses with Down syndrome before fully weighing their options.[1] Expectant parents may automatically assume that an individual with Down syndrome will not lead a worthwhile life and that raising the child will pose too many challenges for them.[2] In order to minimize the number of fetuses with Down syndrome that are being aborted (which may be greater than 90%),[3] expectant parents need access to up-to-date, comprehensive information about all aspects of raising a child with Down syndrome, including the many positive aspects. Whatever decision a parent makes regarding raising a child with consent. Part IV examines current state and federal laws that require healthcare providers to give information to expectant mothers who receive a prenatal Down syndrome diagnosis. Part IV also addresses why a law requiring post-Down syndrome diagnosis information is not unduly burdensome. Specifically, Part IV looks closely at the Prenatally and Postnatally Diagnosed Conditions Awareness Act and state statutes in Missouri, New Jersey, Alabama, and Virginia.  Part V discusses why laws already enacted on this issue are inadequate and proposes a model statute that all states can follow in crafting their own similar laws. Finally, Part V addresses potential concerns related to the proposed law like cost, enforcement, and First Amendment rights, and how those issues may be resolved.


PLoS ONE ◽  
2016 ◽  
Vol 11 (6) ◽  
pp. e0155731 ◽  
Author(s):  
Karen L. Baab ◽  
Peter Brown ◽  
Dean Falk ◽  
Joan T. Richtsmeier ◽  
Charles F. Hildebolt ◽  
...  

Life Sciences ◽  
2004 ◽  
Vol 76 (4) ◽  
pp. 379-384 ◽  
Author(s):  
Adriano B.L. Tort ◽  
Luis V. Portela ◽  
Maria da Purificação Tavares ◽  
Carlos A. Gonçalves ◽  
Cristina Netto ◽  
...  

2017 ◽  
Vol 129 ◽  
pp. 16S-17S
Author(s):  
Karen Scrivner ◽  
Maria Rodriguez ◽  
Leah Savitsky ◽  
Blake Zwerling ◽  
Kimberley Bullard ◽  
...  

2020 ◽  
Vol 30 (12) ◽  
pp. 1783-1797
Author(s):  
Lauren Clark ◽  
Heather E. Canary ◽  
Kyle McDougle ◽  
Rebekah Perkins ◽  
Ruth Tadesse ◽  
...  

The script of parenting shifts when parents learn of their child’s Down syndrome diagnosis. To build a theory of the diagnostic experience and early family sense-making process, we interviewed 33 parents and nine grandparents living in the United States who learned prenatally or neonatally of their child’s diagnosis. The core category of rescuing hope for the future encompassed the social process of sense-making over time as parents managed their sorrow, shock, and grief and amassed meaningful messages that anchored them as they looked toward the future. Application of the theory to practice underscores the import of early professional support offered to parents at key points in the sense-making process: Early as they disclose the news of the diagnosis to family and friends, and later close friends and kin assimilate meaningful messages about what the diagnosis means as they recalibrate expectations for a hopeful future.


2020 ◽  
Vol 29 ◽  
Author(s):  
Débora Lara Couto Schettini ◽  
Marcia Leigh Van Riper ◽  
Elysângela Dittz Duarte

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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