References

Ahmed S, Bryant L, Cole P Midwives’ perceptions of their role as facilitators of informed choice in antenatal screening. Midwifery. 2013; 29:(7)745-50 https://doi.org/10.1016/j.midw.2012.07.006

Bryant LD, Ahmed S, Ahmed M, Jafri H, Raashid Y ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan. Soc Sci Med. 2011; 72:(8)1393-9 https://doi.org/10.1016/j.socscimed.2011.02.036

Crofts JF, Ellis D, Draycott TJ, Winter C, Hunt LP, Akande VA Change in knowledge of midwives and obstetricians following obstetric emergency training: a randomised controlled trial of local hospital, simulation centre and teamwork training. BJOG. 2007; 114:(12)1534-41

Cuskelly M, Hauser-Cram P, Van Riper M Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Education Online. 2008; https://doi.org/10.3104/reviews.2079

de Groot-van der Mooren MD, Gemke RJ, Cornel MC, Weijerman ME Neonatal diagnosis of Down syndrome in The Netherlands: suspicion and communication with parents. J Intellect Disabil Res. 2014; 58:(10)953-61 https://doi.org/10.1111/jir.12125

Down's Syndrome Association. Tell it Right, Start it Right. 2015. http://www.downs-syndrome.org.uk/policy-and-campaigns/tell-it-right-start-it-right (accessed 5 January 2016)

Edwins J From a different planet. Women who choose to continue their pregnancy after a diagnosis of Down's syndrome. Pract Midwife. 2000; 3:(4)21-4

Gammons S, Sooben RD, Heslam S Support and information about Down's syndrome. British Journal of Midwifery. 2010; 18:(11)700-08 https://doi.org/10.12968/bjom.2010.18.11.79562

Kirkpatrick DL, Kirkpatrick JD, 3rd edn. San Francisco, CA: Berrett-Koehler Publishers; 2006

Lalor JG, Devane D, Begley CM Unexpected diagnosis of fetal abnormality: women's encounters with caregivers. Birth. 2007; 34:(1)80-8

Lee P, Allen K, Daly M A ‘Communication and Patient Safety’ training programme for all healthcare staff: can it make a difference?. BMJ Qual Saf. 2012; 21:(1)84-8 https://doi.org/10.1136/bmjqs-2011-000297

Leslie K, Baker L, Egan-Lee E, Esdaile M, Reeves S Advancing faculty development in medical education: a systematic review. Acad Med. 2013; 88:(7)1038-45 https://doi.org/10.1097/ACM.0b013e318294fd29

Menezes MA, Hodgson JM, Sahhar M, Metcalfe SA “Taking its toll”: the challenges of working in fetal medicine. Birth. 2013; 40:(1)52-60 https://doi.org/10.1111/birt.12029

Mills S, Bird G, Black L, Ridley V, Heslam S, Marsden L, Mccall C, Straw F Life with and for a person with Down syndrome.London: MacKeith Press; 2015

Morris JK, Springett ALondon: National Down Syndrome Cytogenetic Register; 2014

National Institute for Health and Care Excellence. Antenatal care for uncomplicated pregnancies. 2008. http://www.nice.org.uk/guidance/cg62 (accessed 5 January 2016)

London: NHS; 2012

Puri SC, Morris J Antenatal diagnosis: Giving the news.London: MacKeith Press; 2015

Reynolds S Down's syndrome: breaking bad news. British Journal of Midwifery. 2003; 11:(12)722-4 https://doi.org/10.12968/bjom.2003.11.12.11865

Scior K Public awareness, attitudes and beliefs regarding intellectual disability: a systematic review. Res Dev Disabil. 2011; 32:(6)2164-82 https://doi.org/10.1016/j.ridd.2011.07.005

Skotko B Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics. 2005; 115:(1)64-77

Skotko BG, Capone GT, Kishnani PS Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news. Pediatrics. 2009; 124:(4)e751-8 https://doi.org/10.1542/peds.2009-0480

Smidt A, Balandin S, Sigafoos J, Reed VA The Kirkpatrick model: A useful tool for evaluating training outcomes. J Intellect Dev Disabil. 2009; 34:(3)266-74 https://doi.org/10.1080/13668250903093125

Sooben RD Antenatal testing and the subsequent birth of a child with Down syndrome: a phenomenological study of parents’ experiences. J Intellect Disabil. 2010; 14:(2)79-94 https://doi.org/10.1177/1744629510381944

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

02 February 2016
Research
02 February 2016
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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Down syndrome
Learning disability
Training
Evaluation