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Women's experiences and reactions when a fetal malformation is detected by ultrasound examination
Sophiahemmet University.
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2013. , 61 p.
Keyword [en]
Prenatal diagnosis, Ultrasound examination, Information, Decision-making, Prenatal depression, Postnatal depression, Anxiety, Attachment, Care
National Category
Nursing Obstetrics, Gynecology and Reproductive Medicine
Identifiers
URN: urn:nbn:se:shh:diva-1422ISBN: 978-91-7549-239-1 (print)OAI: oai:DiVA.org:shh-1422DiVA: diva2:648056
Public defence
2013-09-20, Ehrenborgssalen, Sophiahemmet Högskola, Valhallavägen 91, Ing. R, Stockholm, 09:00
Opponent
Supervisors
Available from: 2013-09-13 Created: 2013-09-13 Last updated: 2016-06-09Bibliographically approved
List of papers
1. Pregnant women's experiences, needs, and preferences regarding information about malformations detected by ultrasound scan
Open this publication in new window or tab >>Pregnant women's experiences, needs, and preferences regarding information about malformations detected by ultrasound scan
2012 (English)In: Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives, ISSN 1877-5764, Vol. 3, no 2, 73-8 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: The aim of the study was to explore pregnant women's experiences of received information in relation to fetal malformation detected on ultrasound.

METHOD: An exploratory descriptive design was used. Semi-structured interviews with women who continued their pregnancy and women who chose to terminate were audiotaped, the information pathway described, and the text subjected to qualitative content analysis.

RESULTS: Most of the women who expected a baby with an abnormality experienced the information given as insufficient, often misleading, conflicting, or incoherent, and sometimes negative. Important factors for interaction between women and caregivers were timing, duration, and manner of the initial dialog and ongoing support. Positive interactions improved the women's ability to understand the information, fostered feelings of trust and safety which reduced their anxiety.

CONCLUSION: Women expressed dissatisfaction both regarding the care-givers' methods of giving information and apply for information from different specialists and continuity. The study highlights important factors which may be helpful to the professionals for improving the information to this vulnerable group of women.

Keyword
Fetal abnormality, Prenatal diagnosis, Second trimester ultrasound, Experience, Information
National Category
Obstetrics, Gynecology and Reproductive Medicine Nursing
Identifiers
urn:nbn:se:shh:diva-1148 (URN)10.1016/j.srhc.2011.12.002 (DOI)22578754 (PubMedID)
Available from: 2012-10-01 Created: 2012-10-01 Last updated: 2014-10-21Bibliographically approved
2. Pregnant women's perspectives on decision-making when a fetal malformation is detected by ultrasound examination
Open this publication in new window or tab >>Pregnant women's perspectives on decision-making when a fetal malformation is detected by ultrasound examination
2013 (English)In: Sexual & Reproductive HealthCare, ISSN 1877-5756, Vol. 4, no 2, 79-84 p.Article in journal (Refereed) Published
Abstract [en]

Objectives

The aims of the study were to explore factors influencing the decision to continue or terminate pregnancy due to detection of fetal malformation following ultrasound examination, to elucidate the need for more information or other routines to facilitate the decision-making process and to assess satisfaction with the decision made.

Design

Descriptive study.

Setting

Four fetal care referral centres in Stockholm, Sweden.

Population

Pregnant women with a detected fetal malformation.

Methods

Data was collected by questionnaires. 134 women participated, 99 completing the questionnaire. Descriptive statistical analysis was performed.

Results

Both women who continued and those who terminated pregnancy based their decision on the severity of the malformation. Other reasons for terminating the pregnancy were aspects including socioeconomic considerations. None stated religious factors. The doctor at the fetal care unit also had an influence on the decision-making. The timeframe receiving information was regarded as long enough in duration but not the number of occasions. In both groups the women made the decision by themselves or together with their partners. The majority experienced that they had made the right decision. Women who terminated their pregnancy had a significant higher rate (51.2%) (p⩽ 0.004) of previous abortions than those in the continuing group (23.2%).

Conclusion

The decision to continue or terminate the pregnancy was to a great extent based on the severity of the malformation. Religious aspects did not seem to influence the decision. Many women expressed a need for additional occasion of information. The vast majority of women were satisfied with their decision.

Keyword
Decision-making, Prenatal diagnosis, Termination, Ultrasound examination, Malformation
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:shh:diva-1319 (URN)10.1016/j.srhc.2013.02.001 (DOI)
Available from: 2013-04-04 Created: 2013-04-04 Last updated: 2014-10-21Bibliographically approved
3. Pregnancy termination due to fetal anomaly: women's reactions, satisfaction and experiences of care
Open this publication in new window or tab >>Pregnancy termination due to fetal anomaly: women's reactions, satisfaction and experiences of care
2014 (English)In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 30, no 6, 620-627 p.Article in journal (Refereed) Published
Abstract [en]

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.

Keyword
Fetal abnormality, Obstetrical ultrasound, Psychological outcome, Care
National Category
Obstetrics, Gynecology and Reproductive Medicine Nursing
Identifiers
urn:nbn:se:shh:diva-1420 (URN)10.1016/j.midw.2013.10.013 (DOI)24269148 (PubMedID)
Available from: 2013-09-13 Created: 2013-09-13 Last updated: 2014-10-21Bibliographically approved
4. Maternal emotional wellbeing over time and attachment to the fetus when a malformation is detected
Open this publication in new window or tab >>Maternal emotional wellbeing over time and attachment to the fetus when a malformation is detected
2015 (English)In: Sexual & Reproductive Healthcare, ISSN 1877-5756, Vol. 6, no 3, 191-195 p.Article in journal (Refereed) Published
Keyword
Ultrasound screening, Fetal malformation, Maternal-fetal attachment, Emotional wellbeing, Postnatal depression
National Category
Nursing Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:shh:diva-1421 (URN)10.1016/j.srhc.2015.04.003 (DOI)
Available from: 2013-09-13 Created: 2013-09-13 Last updated: 2015-11-10Bibliographically approved

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