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Tell it Right, Start it Right: An evaluation of training for health professionals about Down syndrome

02 February 2016
14 min read
Volume 24 · Issue 2

Abstract

Midwives do not routinely receive training in how to manage parent care when Down syndrome (DS) is identified in pregnancy or after birth. Many parents report dissatisfaction with the response of health professionals during this time. In response to this, the UK Down's Syndrome Association has developed the Tell it Right, Start it Right training. This paper reports on an evaluation of the training using the Kirkpatrick model (Kirkpatrick and Kirkpatrick, 2006). A repeated measures online survey was delivered before training, immediately after training and 2 months after training. Midwives constituted the majority of participants. The evaluation found that knowledge of DS, confidence in communicating with parents and confidence in delivering a diagnosis of DS significantly increased after attending. Some evidence of applying knowledge in the workplace was identified; however, such training must become embedded in mandatory professional education if widespread improvements in parent experience are to be achieved.

Down syndrome (DS) is one of the most common and recognisable conditions associated with learning disability, and approximately 2.7/1000 pregnancies are affected (Morris and Springett, 2014). Many parents reflect on the experience of receiving a diagnosis of DS and the care around that time with emotion (Skotko, 2005). In some cases, especially when they choose to continue the pregnancy or receive the diagnosis after their baby is born, parents experience dissatisfaction or anger with the care they receive (Edwins, 2000; Lalor et al, 2007; Sooben, 2010; Mills et al, 2015). Sources of this dissatisfaction include perceived staff insensitivity, a feeling of information being withheld by midwives, being given the diagnosis when a partner is not present, and a lack of accurate up-to-date information (Edwins, 2000; Lalor et al, 2007; Gammons et al, 2010; Sooben, 2010; Mills et al, 2015). Some parents particularly dislike the framing of the diagnosis as ‘breaking bad news' (Reynolds, 2003). Although there is some literature on good practice, most health professionals receive no formal training on how to communicate with parents about DS or deliver a diagnosis (Skotko et al, 2009; de Groot-van der Mooren et al, 2014; Puri and Morris, 2015).

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