'I want a choice, but I don't want to decide'-A qualitative study of pregnant women's experiences regarding early ultrasound risk assessment for chromosomal anomalies

被引:46
作者
Aune, Ingvild [1 ]
Moller, Anders [2 ]
机构
[1] Univ Coll, N-7004 Trondheim, Norway
[2] Nord Sch Publ Hlth, SE-40242 Gothenburg, Sweden
关键词
Prenatal screening; Chromosomal anomalies; Risk communication; Grounded theory; FETAL NUCHAL TRANSLUCENCY; DOWN-SYNDROME; DECISION-MAKING; INFORMED-CONSENT; SCREENING-TESTS; TRISOMY-21; INFORMATION; DISORDERS; KNOWLEDGE; PARENTS;
D O I
10.1016/j.midw.2010.10.015
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
Objective: to increase our understanding of how pregnant women experience early ultrasound examination that includes a risk assessment for chromosomal anomalies and how such women perceive the test results. Design/setting: qualitative study at St. Olavs Hospital in Norway. Both pre- and post-examination interviews were conducted with ten pregnant women who underwent risk assessment for chromosomal anomalies. Grounded theory was used to analyse the results. Findings: the study generated a core category (I want a choice, but I don't want to decide), which related to the conflict between choice and decision making. There were also five main categories (existential choices, search for knowledge, anxiety, feeling of guilt and counselling and care). The main categories describe the complex feelings experienced by the women regarding the risk assessment. Factors contributing to the difficulty of choice included loss of control and coping, emotional connection to the fetus and social pressure. As the women sought independent choices without any external influence, they also felt greater responsibility. The women's understanding of the actual risk varied, and they used different types of logic and methods to evaluate the risk and reach a decision. Conclusions: the pregnant women in this study wanted prenatal diagnostic information and easy access to specialty services. Stress-related feelings and non-transparent information about the actual and perceived risks as well as personal moral judgments made the decision-making process complicated. Improved distribution of information and frequent contact with health professionals may help such women to make informed choices in accordance with their values and beliefs. (C) 2010 Elsevier Ltd. All rights reserved.
引用
收藏
页码:14 / 23
页数:10
相关论文
共 54 条
[21]   On being at higher risk: A qualitative study of prenatal screening for chromosomal anomalies [J].
Heyman, Bob ;
Hundt, Gillian ;
Sandall, Jane ;
Spencer, Kevin ;
Williams, Clare ;
Grellier, Rachel ;
Pitson, Laura .
SOCIAL SCIENCE & MEDICINE, 2006, 62 (10) :2360-2372
[22]   Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments [J].
Kelly, Susan E. .
SOCIOLOGY OF HEALTH & ILLNESS, 2009, 31 (01) :81-97
[23]  
Kerr Anne., 2004, Genetics and Society: A Sociology of Disease
[24]   Women's interpretation of an abnormal result on measurement of fetal nuchal translucency and maternal serum screening for prenatal testing of Down syndrome [J].
Khoshnood, B. ;
De Vigan, C. ;
Blondel, B. ;
Lhomme, A. ;
Vodovar, V. ;
Garel, M. ;
Goffinet, F. .
ULTRASOUND IN OBSTETRICS & GYNECOLOGY, 2006, 28 (03) :242-248
[25]   Procedure-related miscarriages and Down syndrome-affected births: Implications for prenatal testing based on women's preferences [J].
Kuppermann, M ;
Nease, RF ;
Learman, LA ;
Gates, E ;
Blumberg, B ;
Washington, AE .
OBSTETRICS AND GYNECOLOGY, 2000, 96 (04) :511-516
[26]  
Lemon B.S., 2004, OBSTET NEONATAL NURS, V8, P520
[27]  
Lou Stina, 2007, Ugeskr Laeger, V169, P914
[28]  
Marteau T M, 2001, Health Expect, V4, P99, DOI 10.1046/j.1369-6513.2001.00140.x
[29]   Communicating genetic risk information [J].
Marteau, TM .
BRITISH MEDICAL BULLETIN, 1999, 55 (02) :414-428
[30]   Decisions about prenatal testing for chromosomal disorders: Perceptions of a diverse group of pregnant women [J].
Moyer, A ;
Brown, B ;
Gates, E ;
Daniels, M ;
Brown, HD ;
Kuppermann, M .
JOURNAL OF WOMENS HEALTH & GENDER-BASED MEDICINE, 1999, 8 (04) :521-531