“Your baby has Down syndrome”: what is the preferable way to inform parents?

Schimmel, Michael S.; Mimouni, Francis; Yosef, Tali Mor; Wasserteil, Netanel

doi:10.1038/s41372-020-0701-6

Cited by 5 publications

(3 citation statements)

References 5 publications

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“…The significant emotions experienced with a postnatal diagnosis resonated across these parents’ stories and resonates across many other international studies (Schimmel, et al 2020; Staats et al, 2015), suggesting that this is not just a unique experience to the Irish context. Rather, it reinforces the evidence that parents experience a wide range of emotions irrespective of receiving a prenatal or post-natal diagnosis of their child’s Down syndrome (Farkas et al, 2019; Pillay et al, 2012).…”

Section: Discussionsupporting

confidence: 59%

“…Therefore, the way in which healthcare professionals’ disclose this diagnosis needs to be compassionate, tailored, kind and balanced (Sheets et al, 2011b; Marshall et al 2019). A welcoming finding in this study was that the majority of parents were satisfied with the way the diagnosis was delivered, a finding echoed by Israeli mothers in a quantitative study with 45 mothers who received a postnatal diagnosis of Down syndrome (Schimmel, et al 2020).…”

Section: Discussionmentioning

confidence: 74%

“…All parents interviewed in this study recommended that the diagnosis is ideally given with a partner or family member present, similar to Israeli mothers (Schimmel et al (2020), Indian parents (Rasendrakumar et al 2021) and Irish parents (Smith et al 2018) of children with Down syndrome. Being informed of the diagnosis alone or during the early hours of the morning, left parents feeling distressed, a finding highlighted across studies.…”

Section: Discussionmentioning

confidence: 99%

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Down syndrome: Parental experiences of a postnatal diagnosis

Grane

Lynn²,

Balfe

et al. 2022

J Intellect Disabil

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Background Globally it is estimated that Down syndrome occurs in 1 in 800 live births ( Bull 2020 ). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome. Method A qualitative research approach was used through semi structured interviews. Eight parents of a baby diagnosed postnatally with Down syndrome participated in this study sharing their stories of their postnatal diagnosis experiences. Results Five overarching themes emerged using a descriptive thematic analysis; 1. prenatal screening, pregnancy and delivery; 2 . how the diagnosis was delivered; 3. setting and emotional experiences; 4. moving on with the postnatal diagnosis and 5. Future recommendations from parents’ perspectives. Conclusion This study highlighted the importance of the need for clinicians to ensure that partners are present at the time of the disclosure, that ample time is allocated and that verbal and written communications are provided to parents using less medical jargon when delivering the postnatal diagnosis of Down syndrome. These reasonable adjustments could alleviate parental anxiety at this critical juncture in their lives. Online resources and support forums were also identified as an integral support for families on discharge from the maternity centres and in the early months and years.

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Section: Discussionsupporting

confidence: 59%