Women???s Experience of Maternal Serum Screening

Abstract

OBJECTIVETo explore the ideas, opinions, feelings, and experiences of women regarding prenatal genetic screening, specifically maternal serum screening (MSS). DESIGN Qualitative technique of focus groups.SETTING Northern, rural, inner-city, urban, and suburban communities in Ontario.PARTICIPANTS Women who had given birth to babies from January 1994 to May 1996, but who were not currently pregnant (n = 60).METHOD Six focus groups composed of women living in various communities who had recently given birth to babies explored the experience of MSS.MAIN FINDINGS Women want informed choice about prenatal genetic screening. Three factors influenced women's decisions to undergo or decline prenatal genetic screening: their personal values, including their philosophy of life, moral, and religious values, and attitudes regarding Down syndrome and disability; social support including their partners, families, and friends; and quality of information from health care providers. Women want their providers to give them information personally; they want to receive the information as early as possible in prenatal care to allow time for reflection; and they want unbiased, accurate information in order to make a decision that is in keeping with their personal values and beliefs.CONCLUSIONS Knowledge of women's ideas, opinions, feelings, and experiences regarding MSS suggests specific ways health care providers can facilitate informed decision making in prenatal screening. Providing information about genetic testing needs to be individualized, with women actively participating in the decisionmaking process. Information needs described by these women could apply to other prenatal genetic tests that might be available in the future.OBJECTIF Explorer les idées, les opinions, les sentiments et les expériences des femmes concernant le dépistage génétique prénatal, en particulier le dépistage sérologique chez la mère. CONCEPTION Une méthodologie qualitative de groupes témoins.CONTEXTE Des collectivités ontariennes du Nord, du noyau central de villes, de milieux ruraux, urbains et de banlieues.PARTICPANTES Des femmes vivant dans diverses collectivités qui avaient donné naissance à un enfant entre janvier 1994 et mai 1996, mais qui n'étaient pas présentement enceintes (n = 60).MÉTHODE Six groupes témoins composés de femmes vivant dans diverses collectivités qui avaient récemment donné naissance à un enfant ont passé en revue l'expérience du dépistage sérologique chez la mère.PRINCIPAUX RÉSULTATS Les femmes aspirent à faire un choix éclairé quant au dépistage génétique prénatal. Trois facteurs influencent les décisions des femmes de procéder ou non au dépistage génétique prénatal: leurs valeurs personnelles, notamment leur philosophie de vie, leurs principes moraux et religieux, et leur attitude à l'égard du syndrome de Down et de l'invalidité; le soutien social provenant, entre autres, de leur partenaire, de leur famille et de leurs amis; ainsi que la qualité des renseignements fournis par les dispensateurs de soins de la santé. Les femmes...

Rates of prenatal screening across health care regions in Ontario, Canada: a retrospective cohort study

“…15 Not all of our data definitions (e.g., gestational age at abortion) have been previously validated. The proportion of pregnancies that resulted in spontaneous or therapeutic abortion before 16 weeks' gestation was lower than population-based estimates; however, it suggests that we did not exclude eligible women from the cohort.…”

“…mending universal offer of prenatal screening, uptake varies by maternal preferences, [15][16][17][18][19][20] provider practice patterns [21][22][23][24][25] and maternal sociodemographic characteristics. [26][27][28][29][30][31][32] In light of the shifting and increasingly market-driven landscape of prenatal screening in Canada, 33 we examined the screening rates for publicly insured tests across health care regions in the province of Ontario.…”

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review

“…[49][50][51][52][53][54][55][56][57][58][59][60][61][62][63][64][65] The main research question of these studies varied, with few aiming to ascertain whether or not participants had received sufficient information prior to the offer of testing (Appendix 3 describes the research aims of included studies).…”

“…A ll 52 studies included in this section referred to a measure that aimed to understand women's prenatal testing choices; 34 were concerned with Down's syndrome screening, 17,45,48,[51][52][53][54][55][57][58][59][60][61][62][63][64][65]75,[81][82][83][84]86,[112][113][114][115][116][117][118][119][120][121][122] and 18 with prenatal carrier testing. 89,90,92,94,[96][97][98][99][100][101][102][103][104]107,[123]…”

“…Twenty-one studies elicited women's views on the value of prenatal screening, 12 for chromosomal disorders 52,53,55,57,59,60,64,113,114,117,119,121 and nine for carrier testing. 80,90,92,94,96,98,102,124,125 About 80% of women preferred to have the screening option to just the diagnostic test alternative 64,119 and would consider paying for these services.…”