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Table 1 Summary of Included Qualitative Studies

From: Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women’s experiences

Authors Date Title Country Qualitative Methodology Participants Main Research Question or Purpose of Study
Agatisa PK, Mercer MB, Leek AC, et al. [23] 2015 A first look at women’s perspectives on noninvasive prenatal testing to detect sex chromosome aneuploidies and microdeletion syndrome United States Interpretive Description 31 women What are women’s knowledge and attitudes about the use of NIPT to detect sex chromosome aneuploidies? What are their views on emerging applications of NIPT to detect microdeletion syndromes?
Agatisa PK, Mercer MB, Mitchum A, et al. [65] 2018 Patient-centered obstetric care in the age of cell-free fetal DNA prenatal screening United States Grounded Theory and Adapted Approaches 27 women What are patients’ perspectives on the clinical infrastructures required to their educational and decision-making needs around prenatal genetics and genomics?
Chen A, Tenunen H, Torkki P, et al. [72] 2017 Considering medical risk information and communicating values: a mixed-method study of women’s choice in prenatal testing Finland Thematic Analysis and Adapted Approaches 26 women How do women decide between NIPT, CVS, and amniocentesis when all three are publicly covered for high-risk pregnancies?
Crombag NMTH, van Schendel R, Schielen PCJI, et al. [69] 2016 Present to future: what the reasons for declining first-trimester combined testing tell us about accepting or declining cell-free DNA testing Netherlands Content Analysis 46 women Why do women decline first-trimester combined screening? How do these reasons relate to future (hypothetical uptake of cell-free DNA testing?
Daley R, Hill M, & Lewis C. [75] 2017 Evaluation of patient information leaflets or non-invasive prenatal testing for Down’s syndrome United Kingdom Thematic Analysis and Adapted Approaches 81 women To develop and validate a patient information leaflet to support the introduction of NIPT into the prenatal screening program in the UK.
Farrell RM, Mercer MB, Agatisa PM, et al. [24] 2014 It’s more than a blood test: patients’ perspectives on noninvasive prenatal testing United States Grounded Theory and Adapted Approaches 53 women How do women understand the utility of NIPT compared to other prenatal screening modalities? What factors do they consider in their decision-making process?
Farrell R, Hawkins A, Barragan D, et al. [64] 2015 Knowledge, understanding, and uptake of noninvasive prenatal testing among Latina women United States Not Specified 25 women What factors influence the knowledge, understanding, and uptake of NIPT among Latina women? How do they use information from NIPT to make decisions about their pregnancy?
Farrell RM, Agatisa PK, Mercer MB, et al. [66] 2015 Balancing risks: the core of women’s decisions about noninvasive prenatal testing United States Grounded Theory and Adapted Approaches 53 women How do women understand the benefits and risks of NIPT? How does this understanding influence their views of the benefits and risks of prenatal screening and testing?
Floyd E, Allyse, MA, & Michie M. [25] 2016 Spanish- and English-speaking pregnant women’s views on cfDNA and other prenatal screening: practical and ethical reflections United States Grounded Theory and Adapated Approaches 24 women How are the views of Latina and non-Latina women about cfDNA screening and other prenatal screening similar and different?
Gross NEZ, Geva-Eldar T, Pollak Y, et al. [58] 2017 Attitudes toward prenatal genetic testing and therapeutic termination of pregnancy among parents of offspring Pradr-Willi syndrome Israel Not Specified 85 parents (male and female) What are the attitudes of parents of offspring with Prader-Willi syndrome towards prenatal diagnostic testing and t termination of pregnancy in hypothetical pregnancies where Prader-Willi syndrome is expected?
Haidar H, Vanstone M, Laberge AM, et al. [26] 2018 Cross-cultural perspectives on decision-making regarding non-invasive prenatal testing: A comparative study of Lebanon and Quebec Canada and Lebanon Qualitative Description 17 women and 16 partners How do women in Quebec and Lebanon make decisions around NIPT?
How B, Smidt A, Wilson NJ, et al. [61] 2018 ‘We would have missed out so much had we terminated’: what fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome Australia Thematic Analysis and Adapted Approaches 5 fathers What are the views of Australian fathers towards the availability of NIPT in relation to their lived experience of parenting their child with Down syndrome?
Kibel M & Vanstone M. [33] 2017 Reconciling ethical and economic conceptions of value in health policy using the capabilities approach: a qualitative investigation of non-invasive prenatal testing Canada Content Analysis 38 women Using NIPT as a case study, can the capabilities approach be used to resolve contradictions between economic and ethical framings of ‘value’ for morally challenging health technologies?
Lau JYC, Yi H, & Ahmed S. [63] 2016 Decision-making for non-invasive prenatal testing for Down syndrome: Hong Kong Chinese women’s preferences for individual vs. relational autonomy China Thematic Analysis and Adapted Approaches 36 women What are Hong Kong Chinese women’s preferences around individual vs. relational autonomy in decision-making about NIPT for Down syndrome?
Lewis C, Hill M, Skirton H, et al. [29] 2012 Fetal sex determination using cell-free fetal DNA: service users’ experiences of and preferences for service delivery United Kingdom Thematic Analysis and Adapted Approaches 38 women and 6 partners What are users’ experiences of NIPT? What decisions did they make upon receiving NIPT results? What are their preferences for how the test should be offered in clinical practice?
Lewis C, Hill M, Skirton H, et al. [59] 2012 Non-invasive prenatal diagnosis for fetal sex determination: benefits and disadvantages from the service users’ perspective United Kingdom Grounded Theory and Adapted Approaches, and Thematic Analysis 38 women and 7 partners What are users’ perspectives on the benefits and disadvantages of NIPT?
Lewis C, Silock C, & Chitty LS. [30] 2013 Non-invasive prenatal testing for Down’s syndrome: pregnant women’s views and likely uptake United Kingdom Thematic Analysis and Adapted Approaches 40 women What are pregnant women’s views and preferences for NIPT?
Lewis C, Hill M, & Chitty LS. [27] 2016 A qualitative study looking at informed choice in the context of on-invasive prenatal testing for aneuploidy United Kingdom Thematic Analysis and Adapted Approaches 45 women How do women experience informed consent for NIPT?
Lewis C, Hill M, & Chitty LS. [28] 2016 Women’s experiences and preferences for service delivery of non-invasive prenatal testing for aneuploidy in a public health setting: a mixed methods study United Kingdom Thematic Analysis and Adapted Approaches 81 women What are women’s experiences with and preferences for NIPT?
Li G, Chandrasekharan S, & Allyse M. [68] 2017 “The top priority is a healthy baby”: narratives of health, disability, and abortion in online forum discussions in the US and China United States and China Content Analysis Not specified; used online forums How are the views of Chinese and American individuals around prenatal screening similar and different?
Long S, O’Leary P, Lobo R, et al. [71] 2018 Women’s understanding and attitudes towards Down’s syndrome and other genetic conditions in the context of prenatal screening Australia Thematic Analysis and Adapted Approaches 30 women How do women understand current prenatal screening modalities? What do women understand about Down syndrome and other genetic conditions that can be detected through prenatal screening?
Mozersky J. [74] 2015 Hoping someday never comes: deferring ethical thinking about noninvasive prenatal testing United States Grounded Theory and Adapted Approaches Not specified To illustrate that pre-test counselling for NIPT may not include an adequate discussion of ethical concerns.
Piechan JL, Hines KA, Koller DL, et al. [67] 2016 NIPT and informed consent: an assessment of patient understanding of a negative NIPT result United States Interpretive Content 98 women How do patients understand NIPT and interpret negative results? How do they perceive NIPT in comparison to other prenatal screening modalities? How do they understand the advantages and limiations of NIPT?
Reese KM, Czerwinski J, Darilek S, et al. [31] 2018 Attitudes toward and uptake of prenatal genetic screening and testing in twin pregnancies United States Thematic Analysis and Adapted Approaches 42 women What factors play a role in women’s decision around prenatal genetic screening in twin pregnancies?
van Bruggen MJ, Henneman L, & Timmermans DRM. [73] 2018 Women’s decision making regarding prenatal screening for fetal aneuploidy: a qualitative comparison between 2003 and 2016 Netherlands Thematic Analysis and Adapted Approaches 41 women What are the similarities and differences in pregnant women’s decision-making process around prenatal screening in 2003 compared with 2016?
van Schendel RV, Kleinveld JH, Dondorp WJ, et al. [32] 2014 Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening Netherlands Content Analysis 41 women and 19 male partners What are the attitudes of pregnant women and their male partners toward NIPT? What are their views on expanding the scope of prenatal screening through NIPT?
van Schendel RV, Kater-Kuipers A, van Vliet-Lachozki EH, et al. [60] 2017 What do parents of children with Down syndrome think about non-invasive prenatal testing (NIPT)? Netherlands Content Analysis 21 women and 6 family members What are the attitudes of parents of children with Down syndrome towards NIPT?
Vanstone M, Yacoub K, Giacomini M, et al. [70] 2015 Women’s experiences of publicly funded non-invasive prenatal testing in Ontario, Canada: considerations for health technology policy-making Canada Grounded Theory and Adapted Approaches 38 women What are women’s experiences with publicly funded NIPT?
Vanstone M, Cernat A, Nisker J, et al. [34] 2018 Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions Canada Grounded Theory and Adapted Approaches 38 women How do women understand the ethics implications of the implementation of NIPT in Ontario, Canada?
Yi H, Hallowell N, Griffiths S, et al. [62] 2013 Motivations for undertaking DNA sequencing-based non-invasive prenatal testing for fetal aneuploidy: a qualitative study with early adopter patients in Hong Kong China Thematic Analysis and Adapted Approaches 45 women What are women’s motivations for undertaking NIPT screening for Down syndrome? What are their perceptions about the testing process?