Explaining low uptake for Down syndrome screening in the Netherlands : (and predicting utilisation of other programmes)

In the Netherlands, only a quarter of all pregnant women take part in the current Down syndrome screening(DSS) programme. Compared to other Northern European countries, Dutch uptake rates are very low. This thesis concentrates on the test-utilisation of DSS, in particular the factors impeding or enabling women to use this test. Both healthcare system factors and individual factors were studied with regard to their effect on utilisation, to understand the low Dutch uptake. Additionally, this study aimed at investigating future foetal and maternal screening tests and to reflect on future utilisa... Mehr ...

Verfasser: Crombag, NMTH
Dokumenttyp: Dissertation
Erscheinungsdatum: 2016
Verlag/Hrsg.: Utrecht University
Schlagwörter: Down syndrome / Prenatal screening / decision making / Utilisation of healthcare / Healthcare system / Non-invasive prenatal testing
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-26835228
Datenquelle: BASE; Originalkatalog
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Link(s) : https://dspace.library.uu.nl/handle/1874/334163

In the Netherlands, only a quarter of all pregnant women take part in the current Down syndrome screening(DSS) programme. Compared to other Northern European countries, Dutch uptake rates are very low. This thesis concentrates on the test-utilisation of DSS, in particular the factors impeding or enabling women to use this test. Both healthcare system factors and individual factors were studied with regard to their effect on utilisation, to understand the low Dutch uptake. Additionally, this study aimed at investigating future foetal and maternal screening tests and to reflect on future utilisation. Innovations in prenatal screening provide pregnant women with more adequate and reliable test opportunities regarding their own health, as well as that of their foetus. Advances in testing, should ideally contribute to better pregnancy outcomes, but also present pregnant women with all its inherent disadvantages and challenges. In this thesis we have taken a multilevel approach to addressing the aim of the study, and therefore different methods have been used to answer the various subquestions. Thus, throughout this thesis, both quantitative research, documentary analysis (desk research), qualitative research, and a mix of quantitative and qualitative methodologies, also known as mixed method research were used. In the Netherlands, the set-up of the DSS policy is the result of a debate preceding the implementation of this test with sometimes conflicting arguments ( ‘equal access’ versus ‘fear for routinisation’). As a result, DSS is offered to all women, but at the same time conveys the message that DSS is not ‘just routine’ by the strong implementation of the ‘right not to know’ principle and an additional fee for women aged 36 and up. The effect of this is that Dutch women are aware of the ethical considerations they might have to face when accepting the test. In general they have a positive attitude towards Down syndrome, which is for most of them not a reason to terminate their pregnancy. At the same time, the ...