|Year : 2019 | Volume
| Issue : 1 | Page : 1-10
The needs of women who have experienced pregnancy termination due to fetal anomalies: A literature review
Bahareh Kamranpour1, Mahnaz Noroozi2, Masoud Bahrami3
1 Student Research Center, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan; Department of Midwifery, Rasht Branch, Islamic Azad University, Rasht, Iran
2 Department of Midwifery and Reproductive Health, Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
3 Department of Adult Health Nursing, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
|Date of Web Publication||7-Dec-2018|
Dr. Mahnaz Noroozi
Department of Midwifery and Reproductive Health, Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan
Source of Support: None, Conflict of Interest: None
Background: Pregnancy termination due to fetal anomalies is associated with emotional, psychological, and social injuries for women. Determining the needs of women with these experiences is the key for programming to provide high quality and desirable care. Hence, the present study was conducted to determine the needs of women who have experienced pregnancy termination due to fetal anomalies. Materials and Methods: The present literature review was conducted in March 2018 by searching databases such as Irandoc, SID, MagIran, Iranmedex, Cochrane, Science Direct, ISI Web of science, PubMed, Google Scholar, and Scopus. The used keywords for the search included “fetal anomalies,” “pregnancy termination due to fetal anomalies,” “therapeutic abortion,” “need assessment,” and “care program.” Publication date was restricted to 2004–2017, and publication language was restricted to English and Farsi. Article search was conducted by two independent reviewers, and all of the studies were evaluated by these two individuals. The searches resulted in finding 88 articles related to the subject from which 16 articles that had more appropriately covered the topic were selected for the present study. Results: From the results, the needs of these women could be categorized into two groups of “needs related to the care system” and “needs related to the husband, family members, friends, and peers.” Conclusions: Considering that women who have experienced pregnancy termination due to fetal anomalies have different needs, educating healthcare providers and husbands, family members, friends, and peers for providing comprehensive care tailored to the needs of these individuals seems necessary.
Keywords: Birth defects, congenital abnormalities, induced abortion, therapeutic abortion
|How to cite this article:|
Kamranpour B, Noroozi M, Bahrami M. The needs of women who have experienced pregnancy termination due to fetal anomalies: A literature review. Iranian J Nursing Midwifery Res 2019;24:1-10
|How to cite this URL:|
Kamranpour B, Noroozi M, Bahrami M. The needs of women who have experienced pregnancy termination due to fetal anomalies: A literature review. Iranian J Nursing Midwifery Res [serial online] 2019 [cited 2022 Jul 1];24:1-10. Available from: https://www.ijnmrjournal.net/text.asp?2019/24/1/1/247051
| Introduction|| |
Advanced diagnostic technologies in the field of reproduction have led to extensive application of monitoring tests and pre-birth diagnosis of fetal anomalies. Congenital anomalies are all the structural and genetic defects that would occur at the time of conception or during the intrauterine development period. Approximately, congenital anomalies occur in 2% to 3% of the pregnancies and have various prevalence in different populations; from 1.07% in Japan to 4.3% in Taiwan. While pregnancy is considered a forward development for the mother and the family, diagnosis of fetal abnormities is an unexpected incident during this period and is associated with severe emotional injuries for women. This issue would encounter women with many challenges such as continuing the pregnancy without any intervention, selective pregnancy termination, or experimental treatment of the fetus in special cases. In most cases, especially when the fetal anomaly is severe and lethal, the parents would decide to terminate the pregnancy. Deciding to terminate the pregnancy would cause a great responsibility for the mother regarding the loss of the fetus; furthermore, in comparison to other situations, less social support exists for these cases according to the cultural context of the society, women might be blamed for deciding to terminate the pregnancy or for the existing fetal anomaly; Hence, they probably would not be able to easily share their decision with others, which might lead to their loneliness and more vulnerability. The active role of women in terminating the pregnancy is a unique topic that would distinguish its mourning process from the sorrow following abortion or fetal death and is associated with long-term psychological outcomes. Almost all of the studies have reported evidences of these outcomes during the following weeks or months after pregnancy termination. However, some of the studies have reported that these psychological outcomes might not reduce for a long period of time after the incidence; for example, results of the study by Maguire et al. showed that some women might experience the symptoms of post-traumatic stress for 2 to 7 years after the pregnancy termination. In addition, this incidence is associated with other psychological symptoms including the feeling of guilt and humiliation, low self-esteem, anxiety reactions, fury, doubt about the correctness of the decision, and the pressure caused by the fear from social judgment. Results of the studies showed that these women would not receive sufficient social support and even, due to lack of information about this kind of loss, they would not be able to show their mourn for their child loss appropriately. Although the emotional and psychological outcomes following pregnancy termination due to fetal anomalies have been reviewed in various studies, few studies have been conducted to determine the needs of these women especially the appropriate and desired care and supportive needs during the compatibility period following the loss of the fetus. No special supportive systems exist for these women. Although, currently, in some countries, some online groups have been created to support women who have experienced pregnancy termination due to fetal anomalies, it is still not clear whether this kind of support is in accordance with the needs and desires of this group or not. Results of the studies have shown that the quality of the received emotional support from family and friend is different and would fade gradually that would lead to a feeling of loneliness in this sorrow. This lack of support would cause more need for sources of care that women have not predicted it at the time of terminating their pregnancy. Result of the study by Ramdaney et al. showed that although most women are aware of the support sources at the time of pregnancy termination, only half of the women would feel this need. Following up the participants for a couple of months after pregnancy termination showed that most women would not be able to adapt with the existing conditions and are prepared for the psychological outcomes of pregnancy termination. Because experiencing pregnancy termination due to fetal anomalies has various aspects, determining the needs of women with these experiences is the key for programming to provide high quality and desirable cares. Hence, the present study was conducted to determine the needs of women who have experienced pregnancy termination due to fetal anomalies.
| Materials and Methods|| |
This literature review was conducted in March 2018. In the present study, to achieve the intended information, published articles in national journals, Scientific Information Database (SID), Iranian Medical Sciences Articles Database (IranMedex), Iranian Research Institute for Information Science and Technology (Irandoc), and Iranian Magazines Database (Magiran) were searched using the keywords (in Farsi) of “fetal anomalies,” “pregnancy termination,” “therapeutic abortion,” “need assessment,” “care program,” and their possible combinations in the abstracts, titles, and the keywords; for this purpose, “and” and “or” operators were used. English databases including Science Direct, Google Scholar, Scopus, Cochrane, ISI Web of science, and PubMed were searched using the English Mesh equivalents of the Farsi keywords including “needs,” “fetal anomaly,” “termination of pregnancy,” “health care needs,” “social and professional support needs,” “support needs,” “health care professionals supporting,” and “care plan”; “and” and “or” operators were used for combined searching. All of the articles from 2004 to 2017 were searched for this study.
After the primary search of different databases, 88 full texts and abstracts of articles were found. The extracted articles were evaluated according to the inclusion criteria in two steps. During the first step, 28 articles out of 88 were eliminated because of being a duplicate. During the second step, 44 articles were eliminated for having different (irrelevant) titles and goals and also due to lack of a full text. Eventually, 16 articles, 11 qualitative studies, and 5 quantitative studies were enrolled for final evaluation [Figure 1]. It must be noted that article search was conducted by two independent reviewers, and all of the studies were evaluated by these two individuals. Any disagreement between these two was resolved through discussion and by considering the goals of the study, and the opinion of a third person was requested, if necessary. The achieved information from the articles including title, authors, time of the study, and details of the study such as aim, study design, participants, ethical considerations, results, and limitations were evaluated. Eventually, the selected articles were studied to determine the needs of women who have experienced pregnancy termination due to fetal anomalies.
The inclusion criteria were being published from July 2004 to December 2017 on different aspects of women's needs who have experienced pregnancy termination due to fetal anomalies, having relevant titles and being in Farsi or English languages. Articles that were presented in the conferences and seminars, review articles, case reports, and letters to editor were excluded; also lack of access to the full texts of the articles was considered as an exclusion criterion.
Research ethics confirmation (ethics code: IR. MUI. REC.1395.3.945) was received from the Ethics Committee of Isfahan University of Medical Sciences. In the present review study, the gathered information from the research was only used regarding the scientific goals and commitment to protect the intellectual property in reporting and publication of the results.
| Results|| |
Study selection outcome
After reviewing the results of various studies, considering the extensive and various needs of women, the needs were categorized into two classes of (1) needs related to the care system and (2) needs related to the husband, family, friends, and peers.
Needs related to the care system
Most women would experience a range of unpleasant feelings in reaction to the diagnosis of fetal anomaly including sorrow, feeling of emptiness and loneliness, exhaustion, anger, and disappointment.
According to the studies, these women would benefit from receiving appropriate counseling that could resolve misunderstandings and misconceptions about the reasons for the anomalies. In-time presence of experienced caregivers after hearing the news about anomaly besides the parents, approving the women's feelings by the caregivers, continuity of the care by the caregivers, existence of a standard care program from the number of caregivers, pain management, the ability to manage different needs and requests of the patients, informing women about the current conditions, empowering women for selecting the right method of pregnancy termination and the type of cares, having up-to-date information for the caregivers, providing the conditions for seeing the fetus after abortion for having a better adaptation with the reality, and providing the opportunity for visiting with gynecologists after the surgery and answering their questions and planning for future pregnancies (especially in the elder patients) are essential for facilitating the process of decision-making and compatibility with this loss; otherwise, they might feel abandoned in this sorrow.
In addition, the need for having an appropriate communication and respecting their privacy, responsibility of the caregivers, being friendly and speaking and behaving politely toward the women, providing psychosocial supports, empowering women for attracting emotional supports and improving the process of adaptation, and respecting their religious beliefs and fulfilling their spiritual needs are some other needs of women who have experienced pregnancy termination due to fetal anomalies in relation to the care system. According to the studies, in most cases, the discussion about the existence of supportive resources usually starts when the women or the couple has decided to terminate the pregnancy. Healthcare providers, especially genetic counselors, are willing to provide services and supportive measures for these people. However, most women would decide to terminate their pregnancy right after finding out about the fetal anomaly and are not aware of the consequences and the required supports in the future. Effective professional supports would fulfill the expectations and needs of women, especially when provided from a reliable and sincere person. Providing a developed supportive-care plan along with sufficient number of caregivers has an important role in attracting women's satisfaction with the provided cares. However, lack of optimal cares would lead to inconsistency in providing care for these women.
Needs related to the husband, family, friends, and peers
The need for the presence and participation of the family members in the labor room to reduce the feeling of loneliness and insecurity,, receiving sympathy, and sufficient and constant emotional and psychological support from the husband, family members, and the friends to shorten the recovery period,,, the need for receiving support from family members for protection against others' judgment, and the need for visiting others with similar situations, anonymously and online were the most important needs of women related to the husband, family, and friends in women who have experienced pregnancy termination due to fetal anomalies.
According to the studies, no specific care system exists for these women. Although in some countries there are online groups for supporting women, who have experienced pregnancy termination due to fetal anomalies, it is still not determined whether this type of support is proportionate to the needs and desires of this group or not. Results of previous studies have shown that the quality of provided support by the family and friends is variable and would fade over time, which could lead to the feeling of loneliness along with the sorrow. This lack of support would cause more needs for supportive resources that has not been predicted at the time of terminating the pregnancy. A summary of the results is shown in [Table 1].
|Table 1: Studies in the field of the needs of the women who have experienced pregnancy termination due to fetal anomalies from 2004 to 2017|
Click here to view
| Discussion|| |
The present study determined the needs of women who have experienced pregnancy termination due to fetal anomalies. From the results, needs of these women could be categorized into two groups of needs related to the care system and needs related to the husband, family, friends, and peers.
Most of the studies revealed that women would experience a critical period of psychological problems, especially during the first months following the diagnosis;, while they need to relieve their psychological sufferings, they could not realize this need because of the priority of the fetus loss.
A review of the conducted studies showed that in response to the unexpected loss of the fetus, women would express reactions such as anger and fury, sorrow, and crying with various intensities. The most threatening problem for the women who have experienced pregnancy termination due to fetal anomalies is failure to fulfill their psychological needs because their sorrow would be underestimated by others. This might lead to various psychological problems including depression in the clients, their husbands, and children. The role of medical and psychosocial supports that would be provided by professional caregivers is valuable to women and would lead to less negative mental reactions. Undoubtedly, professional support along with the support from the husband and presence of a friend or a relative would be effective in relieving their concerns and adapting with this incidence.
Reviewing previous studies showed that empowering women to attract emotional support and providing long-term supports along with compact professional support from a specialist team could lead to less psychosocial outcomes. Previous studies revealed that women's experiences have indicated unanswered questions, which despite the months passed from the incidence, still had not found any rational answers for. These questions are not specified to any stage of the process, and the need for information has repeatedly been reported from at all the stages of diagnosis, pregnancy termination, and afterwards. In the study of Asplin, the need for receiving new information, speaking about the time of the next pregnancy especially for the elder women, and visiting specialists after the surgery and finding answers to their questions were also described important by the women. In the study of Lalor et al. receiving sufficient and in-time information (immediately after the diagnosis of fetal anomaly), referring the parents to the fetal specialist for confirming the diagnosis, and observing additional documentations for better understanding the subject were some of the most important requests of women. The importance of receiving information is so much that it has been considered as one of the criteria for service evaluation by the participants and their caregivers.
Reviewing previous research indicated that to provide high-quality services that could attract clients' satisfaction, various factors such as patient's access to standard physical care, and principle psychological and social cares that would be provided by professional caregivers are valuable and would cause less undesirable psychological reactions. Hence, service providers should have the necessary abilities and skills in the field of their expertise and provide services in the framework of the standard and update information and also improve their competency by appropriate behavior, work ethics, responsibility, and respecting privacy.
In different studies, another important group of the women's needs to improve their health and return to normal life after experiencing pregnancy termination due to fetal anomalies is supportive needs. These needs would be fulfilled by different groups who are related to the women. Most of the women would expect to be supported by their family and friends, and lack of sufficient support from these groups might be effective in their decision about seeking support from other resources., While the shame of the abortion and having an abnormal fetus might make women concern about others' judgment, they also would not be able to share their sorrow with others, and hence, they would not receive sufficient support in this regard. Women would mostly use coping strategies but their experienced revealed lack of sufficient support in this situation.
Losing the fetus, for any reason, might cause religious confusion for anybody, but in most cases, people would again manage their beliefs, and in most cases, it would lead to more closeness to God. In the study of Cowchock et al., providing the necessary facilities for performing religious acts during the period of hospitalization was mentioned by the participants. These people believed that praying, vowing, repenting, and charity would increase individual's resistance and tolerance against the crisis and is a powerful resource for people that could increase the speed of their recovery. Some patients would consider their illness a divine experiment and believe that they could survive, if they would have strong believes. In the study of Sutan and Miskam, participants repeatedly reminded themselves that everything that happens is a test from God and believed that this reminding would decrease their sense of blame or guilt.
One of the limitations of the present study was lack of access to some of the databases and also the full texts of some of the articles. In addition, because in the field of losing the fetus and its related cares, mostly the focus has been on abortion and intrauterine fetal death, eliminating studies on these topics was another limitation of the present study.
The results of the present study about different needs of women who have experienced pregnancy termination due to fetal anomalies can be used to make decisions and finding strategies to improve the quality of care and treatment services as well as training on the supporting role of the husbands, family members, friends, and peers.
| Conclusion|| |
Reviewing previous research showed that women who have experienced pregnancy termination due to fetal anomalies have different needs. Hence, educating healthcare providers and husbands, family members, friends, and peers for providing comprehensive cares tailored to the needs of these individuals to decrease their psychosocial outcomes seems necessary.
This article was derived from a PhD thesis with project number 395945.
Financial support and sponsorship
Isfahan University of Medical Sciences
Conflicts of interest
Nothing to declare.
| References|| |
Phadke SR, Agarwal M, Aggarwal S. Late termination of pregnancy for fetal abnormalities: The perspective of Indian lay persons and medical practitioners. Prenat Diagn 2011;31:1286-91.
Lew R. Online dictionaries of English. In Fuertes-Olivera PA, Bergenholtz H (eds). E-Lexico-graphy: The Internet, digital initiatives and lexicog-raphy. London/New York: Continuum, 2011. p. 230-50.
Abdi-Rad I, Khoshkalam M, Farrokh-Islamlou HR. The prevalence at birth of overt congenital anomalies in Urmia, Northwestern Iran. Arch Iran Med 2008;11:148-51.
Leuthner S, Jones EL. Fetal concerns program: A model for perinatal palliative care. MCN Am J Matern Child Nurs 2007;32:272-8.
Rapp R. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. United Kingdom: Routledge; 2004.
Hassan HA. Women's Long-Term Life Experience after Pregnancy Termination for Fetal Abnormality: Interpretive Phenomenological Study. PhD Thesis, The School of Graduate and Postdoctoral Studies, The University of Western Ontario; 2015.
Basile ML, Thorsteinsson EB. Parents' evaluation of support in Australian hospitals following stillbirth. PeerJ 2015;3:e1049.
Maguire M, Light A, Kuppermann M, Dalton VK, Steinauer JE, Kerns JL, et al.
Grief after second-trimester termination for fetal anomaly: A qualitative study. Contraception 2015;91:234-9.
Ramdaney A, Hashmi SS, Monga M, Carter R, Czerwinski J. Support desired by women following termination of pregnancy for a fetal anomaly. J Genet Couns 2015;24:952-60.
Asplin N. Women's Experiences and Reactions when a Fetal Malformation is Detected by Ultrasound Examination. Stockholm: Karolinska Institute; 2013.
Nicholson J, Slade P, Fletcher J. Termination of pregnancy services: Experiences of gynaecological nurses. J Adv Nurs 2010;66:2245-56.
Lafarge C, Mitchell K, Fox P. Termination of pregnancy for fetal abnormality: A meta-ethnography of women's experiences. Reprod Health Matters 2014;22:191-201.
Andersson IM, Christensson K, Gemzell-Danielsson K. Experiences, feelings and thoughts of women undergoing second trimester medical termination of pregnancy. PLoS One 2014;9:e115957.
Sutan R, Miskam HM. Psychosocial impact of perinatal loss among Muslim women. BMC Womens Health 2012;12:15.
Geerinck-Vercammen C, Kanhai H. Coping with termination of pregnancy for fetal abnormality in a supportive environment. Obstet Gynecol Surv 2004;59:16-7.
Fisher J, Lafarge C. Women's experience of care when undergoing termination of pregnancy for fetal anomaly in England. J Reprod Infant Psyc 2015;33:69-87.
Cowchock FS, Meador KG, Floyd SE, Swamy GK. Spiritual needs of couples facing pregnancy termination because of fetal anomalies. J Pastoral Care Counsel 2011;65:4.1-10.
Chaloumsuk N. Women's Experiences of miscarriage and Termination of Pregnancy for Fetal Anomaly in Thailand: A Phenomenological Study. PhD Thesis, Faculty of Medicine and Health Sciences, School of Nursing Sciences, University of East Anglia; 2013.
Lalor JG, Devane D, Begley CM. Unexpected diagnosis of fetal abnormality: Women's encounters with caregivers. Birth 2007;34:80-8.
Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Visser GH. Adjustment to termination of pregnancy for fetal anomaly: A longitudinal study in women at 4, 8, and 16 months. Am J Obstet Gynecol 2009;201:160.e1-7.
McCoyd JL. What do women want? Experiences and reflections of women after prenatal diagnosis and termination for anomaly. Health Care Women Int 2009;30:507-35.
Ekelin M, Crang-Svalenius E, Nordström B, Dykes AK. Parents' experiences, reactions and needs regarding a nonviable fetus diagnosed at a second trimester routine ultrasound. J Obstet Gynecol Neonatal Nurs 2008;37:446-54.
Davies V, Gledhill J, McFadyen A, Whitlow B, Economides D. Psychological outcome in women undergoing termination of pregnancy for ultrasound-detected fetal anomaly in the first and second trimesters: A pilot study. Ultrasound Obstet Gynecol 2005;25:389-92.
Korenromp MJ, Christiaens GC, van den Bout J, Mulder EJ, Hunfeld JA, Bilardo CM, et al.
Long-term psychological consequences of pregnancy termination for fetal abnormality: A cross-sectional study. Prenat Diagn 2005;25:253-60.
Asplin N, Wessel H, Marions L, Georgsson Öhman S. Pregnant women's experiences, needs, and preferences regarding information about malformations detected by ultrasound scan. Sex Reprod Healthc 2012;3:73-8.
Cowchock FS, Ellestad SE, Meador KG, Koenig HG, Hooten EG, Swamy GK, et al.
Religiosity is an important part of coping with grief in pregnancy after a traumatic second trimester loss. J Relig Health 2011;50:901-10.