“This is the child we were given”: A qualitative study of Danish parents’ experiences of a prenatal Down syndrome diagnosis and their decision to continue the pregnancy

2020 ◽  
Vol 23 ◽  
pp. 100480 ◽  
Author(s):  
Stina Lou ◽  
Maja Retpen Lanther ◽  
Natascha Hagenstjerne ◽  
Olav Bjørn Petersen ◽  
Ida Vogel
2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A8-A8
Author(s):  
M Miguel ◽  
E Cooke ◽  
J Chawla

Abstract Introduction This qualitative study that investigates parents’ experiences of having a child with Down Syndrome (DS) and sleep difficulties is a part of a broader mixed-method study entitled Sleep Difficulties in Children with Down Syndrome: An Evaluation of Parent/Carer and Family Quality of Life. Methods We conducted semi-structured interviews with 26 parents (fathers n = 4 and mothers n = 22), and reflexive Thematic Analysis (TA) was operationalised for data analysis. The interviews covered the following key topics: DS diagnosis; timeline of their child’s sleep patterns and difficulties; implications for parental sleep, day-time function, and well-being; family dynamics; and access to supports. Results Most participants described negative experiences at time of diagnosis, including not feeling listened to, and receiving inconsistent, insensitive and inadequate information and/or treatment. Most strikingly, no parents recall receiving sleep specific information. Most participants described their child’s sleep difficulties affecting their own sleep, day-time function and family dynamics, yet they commonly normalised these experiences. Such normalisation was a recurring theme across their experiences of having a child with DS and is contextualised by their accounts of resisting prejudiced attitudes towards their child since diagnosis. Discussion This is the first qualitative study to investigate parents’ experiences of having a child with DS and sleep difficulties. Implications include professional development for health care workers focusing on sleep as a significant comorbidity for these children, and awareness of families’ tendencies to normalise their experiences when delivering care.


2011 ◽  
Vol 36 (5) ◽  
pp. 3205-3213 ◽  
Author(s):  
Şafak Saraydemir ◽  
Necmi Taşpınar ◽  
Osman Eroğul ◽  
Hülya Kayserili ◽  
Nuriye Dinçkan

2017 ◽  
Vol 24 (4) ◽  
pp. 369-389 ◽  
Author(s):  
Michael Coughlin ◽  
Caoimhe Doyle ◽  
John Sharry ◽  
Suzanne Guerin ◽  
Dianne Beattie

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.


2018 ◽  
Vol 97 (10) ◽  
pp. 1228-1236 ◽  
Author(s):  
Stina Lou ◽  
Kathrine Carstensen ◽  
Olav Bjørn Petersen ◽  
Camilla Palmhøj Nielsen ◽  
Lone Hvidman ◽  
...  

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