Women’s experiences and reactions when a fetal malformation is detected by ultrasound examination

Background: Second trimester ultrasound examination among pregnant women in Sweden is almost universal. The detection of a fetal malformation on ultrasound puts health care providers and pregnant women in a difficult and precarious situation. What information and how it is communicated is crucial to women’s decision-making about continuing or terminating at pregnancy. The main aim of this thesis was to describe and analyze women’s experiences and reactions following the detection of a fetal malformation on an ultrasound scan. Methods: Two semi-structured in-depth interviews were performed, with women informed of a fetal malformation following an ultrasound scan. A total of 27 women took part in the first round of interviews: women continuing their pregnancy were interviewed, either in gestational week 30 or three weeks after the diagnosis; those terminating their pregnancy were interviewed two to four weeks after termination (Paper I). A second interview with 11 women who terminated their pregnancy was conducted six months after termination (Paper III). Two questionnaires were also administered. The first, answered by 99 women (Paper II) and comprising 22 study- specific questions along with emotional well-being and socio-demographics variables and medical and obstetric history, was conducted at the same time as the first stage of interviews. The other questionnaire, answered by 56 women incorporated common self- report instruments and was performed three times: first in gestational week 30, and then two respectively six months postpartum (Paper IV). Qualitative data were analyzed through content analysis, and quantitative data were analyzed through descriptive statistics. Results: The timing, duration, and manner of women’s initial counseling and ongoing support were shown to be important in the interaction between women and caregivers. Positive interactions improved the women’s ability to understand the information and fostered feelings of trust and safety, which in turn reduced their anxiety. Most of the women who expected a baby with an abnormality expressed their need for information on several occasions to help them make this difficult decision. They also wished for information from different specialists and continuity of care. These needs were even stronger in women who chose to terminate their pregnancy. We found women continuing their pregnancy to be at high risk of depressive symptoms, major worries, and high anxiety levels, both in mid-pregnancy, and at two months and one year postpartum. Despite these findings, the results of the maternal-fetal attachment scale for women who continued their pregnancy with a fetus diagnosed with a malformation indicated a high level of attachment. Conclusions and Clinical Implications: Effective communication, empathy and compassion, and consistent follow-up routines are important to ensure good treatment and care of this group of women. Taking these results into account may improve caregivers’ ability to counsel these vulnerable patients and to ensure that their needs are properly met

Pregnancy termination due to fetal anomaly: Women's reactions, satisfaction and experiences of care

OBJECTIVE:to explore what women who have had a pregnancy terminated due to a detected fetal malformation perceived as having been important in their encounters with caregivers for promoting their healthy adjustment and well-being.METHOD:an exploratory descriptive design was used. Semi-structured interviews were audiotaped, and the information pathway described. The text was processed through qualitative content analysis in six steps.SETTING:four fetal care referral centres in Stockholm, Sweden.PARTICIPANTS:11 women opting for pregnancy termination due to fetal malformation.FINDINGS:in-depth understanding and compassion are important factors in providing the feeling of support people need so they are able to adapt to crisis. The women emphasised that the caregivers have to communicate a sense of responsibility, hope and respect and provide on-going care for them to feel assured of receiving good medical care and treatment. Aside from existing psychological conditions, the women identified as having emotional distress directly after termination and for at least the following three months. Most women experienced a range of negative emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration. Still some of this group had positive reactions because they experienced empathy and well-organised care.CONCLUSION AND IMPLICATIONS FOR PRACTICE:The most important factors associated with satisfaction regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion. The changes in care most often asked for were improvements in the level of standards and provision of adequate support through state-dependent communication, in-depth understanding and compassion, and complete follow-up routines and increased resources. Targeted education for the caregivers may be suited to ensuring that they properly meet needs of their patients.</p

Women's experiences and reactions when a fetal malformation is detected by ultrasound examination

Background: Second trimester ultrasound examination among pregnant women in Sweden is almost universal. The detection of a fetal malformation on ultrasound puts health care providers and pregnant women in a difficult and precarious situation. What information and how it is communicated is crucial to women’s decision-making about continuing or terminating at pregnancy. The main aim of this thesis was to describe and analyze women’s experiences and reactions following the detection of a fetal malformation on an ultrasound scan. Methods: Two semi-structured in-depth interviews were performed, with women informed of a fetal malformation following an ultrasound scan. A total of 27 women took part in the first round of interviews: women continuing their pregnancy were interviewed, either in gestational week 30 or three weeks after the diagnosis; those terminating their pregnancy were interviewed two to four weeks after termination (Paper I). A second interview with 11 women who terminated their pregnancy was conducted six months after termination (Paper III). Two questionnaires were also administered. The first, answered by 99 women (Paper II) and comprising 22 study- specific questions along with emotional well-being and socio-demographics variables and medical and obstetric history, was conducted at the same time as the first stage of interviews. The other questionnaire, answered by 56 women incorporated common self- report instruments and was performed three times: first in gestational week 30, and then two respectively six months postpartum (Paper IV). Qualitative data were analyzed through content analysis, and quantitative data were analyzed through descriptive statistics. Results: The timing, duration, and manner of women’s initial counseling and ongoing support were shown to be important in the interaction between women and caregivers. Positive interactions improved the women’s ability to understand the information and fostered feelings of trust and safety, which in turn reduced their anxiety. Most of the women who expected a baby with an abnormality expressed their need for information on several occasions to help them make this difficult decision. They also wished for information from different specialists and continuity of care. These needs were even stronger in women who chose to terminate their pregnancy. We found women continuing their pregnancy to be at high risk of depressive symptoms, major worries, and high anxiety levels, both in mid-pregnancy, and at two months and one year postpartum. Despite these findings, the results of the maternal-fetal attachment scale for women who continued their pregnancy with a fetus diagnosed with a malformation indicated a high level of attachment. Conclusions and Clinical Implications: Effective communication, empathy and compassion, and consistent follow-up routines are important to ensure good treatment and care of this group of women. Taking these results into account may improve caregivers’ ability to counsel these vulnerable patients and to ensure that their needs are properly met.</p