Table 1 Summary of Included Qualitative Studies
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? |