Supportive needs of women who have experienced pregnancy termination due to fetal abnormalities: a qualitative study from the perspective of women, men and healthcare providers in Iran

The experience of pregnancy is usually considered a desirable transition in women’s lives and is associated with unique physical and mental changes. This transition changes women’s image of themselves by establishing a sense of commitment due to the birth of the neonate and would make them hopeful of a healthy child [1]. Diagnosis of fetal abnormalities is considered an unexpected incident for the mother and the family and is associated with severe emotional trauma. This issue would present women with various challenges including continuing the pregnancy without any interventions or elective termination of the pregnancy [2]. Elective termination in a wanted pregnancy, at any gestational age, is considered as loss of a child and is characterized by loss of hope for the future, expectations and the role of parenthood [3]. Considering that, at the time of diagnosis of fetal abnormalities, definitive prediction of the results in the range of non-fatal to fatal is not possible; decisions made in this situation are emotionally challenging [4]. Furthermore, in comparison to other similar situations, less social support exists for these situations because in the existing cultural context women would be blamed for deciding to terminate the pregnancy and having a fetus with abnormalities; so they could not easily share their decision with others. This would make them more lonely and vulnerable [5]. Results of the study by Rapp also showed that failure to have a healthy child, fear of being responsible for the abnormalities and attachment to the fetus would cause severe grief in women [6]. On the other hand, women’s active role in ending the fetus’ life is a unique circumstance that would distinguish its grieving process from the grief of spontaneous abortion or fetal death [1]. This action followed with several psychological consequences including intense mourning, feeling of guilt and humiliation, low self-esteem, anxious reactions, fury, doubt about the correctness of the decision, and fear of social judgment [2]. Nevertheless, the work of Korenromp and colleagues showed that while distress is very real, regret is rare [7]. Various studies have reported evidence of these reactions especially during the early weeks and months after terminating the pregnancy [8]. Results of the study by Maguire et al. showed that 17% of women would experience the symptoms of post-traumatic stress disorder (PTSD) until 2 to 7 years after terminating the pregnancy [9]. However, the existing studies have shown that these women would not receive sufficient support. Due to lack of information about this kind of loss, they could not even mourn the loss of their child [5]. The increasing growth in application of screening tests would justify the increasing need for providing necessary support for people with diagnosed abnormalities in their fetus. Although the emotional and psychological outcomes of pregnancy termination due to fetal abnormalities have been investigated in various studies, few studies have been conducted about the appropriate support for these people after losing the fetus. Although currently in some countries online groups are working to support women who have experienced pregnancy termination due to fetal abnormalities, it is still not determined whether this kind of support is adequate for their needs and desires [1].

Currently, in our country, fetal health screening tests are performed routinely and for all pregnant women who refer to public and private centers for prenatal care to avoid abnormal childbirth. Therapeutic abortion is legal with the diagnosis of three obstetrician and forensic medicine confirmation for fatal abnormalities causing severe maternal suffering, before the fourth month of pregnancy (or before the 19th week of pregnancy) based on authorized periodical ultrasonography with the consent of the woman. Although screening tests are performed as part of routine care for all mothers, these tests are not free, and the people will pay part of the cost depending on the type of health insurance that they are covered. Also, people who are not covered by the insurance will incur a lot of expense for these tests.

It seems that despite screening tests as part of routine care during pregnancy in the country and considering the issue of therapeutic abortion in cases of fatal abnormalities, there is still no codified program that meets the specific needs and problems of these individuals. Also, despite the physical, emotional and psychological outcomes of pregnancy termination due to fetal abnormalities in women, this group is still being ignored by the care systems and has been neglected by researchers and policy makers. Considering the different aspects of experiencing pregnancy termination due to fetal abnormalities, determining the supportive needs of these women could provide an appropriate context for systematic, comprehensive, cultural-based interventions and caring programs in the society. Since qualitative research is an approach for discovering and describing individual’s experiences and giving meaning and understanding to them [10], the present qualitative study was conducted to determine the supportive needs of women who have experienced pregnancy termination due to fetal abnormalities.

The present qualitative research used a content analysis approach.

During data analysis, 66 codes and eight sub-categories were developed. The final three main categories were “support from the husband”, “support from the family and friends” and “support from the peers” (Table 3).

The present study was conducted to determine the supportive needs of women who have experienced pregnancy termination due to fetal abnormalities. Results of the present study showed that support from the husband, family, friends and peers are the most important sources of support for these women.

Although there are few studies about the supportive role of the husband after pregnancy termination due to fetal abnormalities, results of studies about other causes of fetal loss including intrauterine death and spontaneous abortion)pregnancy loss before the 20th week of gestation) showed that the quality of the couple’s relationship could be effective in their reaction toward this incident. In this regard, results of the study by Avelin showed that, although parents have different methods for mourning, most of the couples would be able to accept the issue and respect each other. On the other hand, most of the mothers are willing to express their feelings clearly after this incidence and share the experience of this loss with their husband [11]. In the study of Toller et al., women who had experienced loss of their fetus also believed that empathy from their husband and his affection toward them which is a sign of accepting this reality could be effective in decreasing their sense of fault and guilt [12]. Results of the study by Anderson et al. revealed that emotional support from the husband, along with professional support, is effective in resolving the concerns and adjustment with this incident [13].

Women participants in the present study also demanded the empathy and presence of their husbands at the time of finding out about the abnormality, while making the decision about terminating the pregnancy, at the time of hospitalization, when returning home and while planning for the next pregnancy. They believed that emotional support from the husband is effective in accepting and coping with the loss. Results of the present study showed that being hopeful of having a healthy child in the next pregnancy would be helpful in maintaining women’s hope for the future and self-esteem. If this desire would be ignored or neglected by the husband, women would suffer significant mental damages. In line with the results of the present study, results of the study by Asplin mentioned that predicting the time of the next pregnancy, especially in older women, is of great importance [14]. It was also determined in a study that lack of sufficient emotional support from the sexual partner could be a strong predictor of long-term undesirable psychological outcomes (post-traumatic stress) in women who have experienced pregnancy termination due to fetal abnormalities [7]. Also, in the study of Ramdaney, having financial capability was considered an effective factor in benefiting from supportive resources [15]. Therefore, husbands should be educated to be aware of women’s emotional needs after this incident and consequently assure their wives that no one blames them for this loss. Also, given that counseling services are not covered by insurance, insurance coverage of counseling and psychological services for women with experience of termination of pregnancy due to fetal abnormalities could be helpful in providing financial support by the husband for his wife to pay the relevant costs. Furthermore, health care providers can use this information to meet the supporting needs of women with a pregnancy termination due to fetal abnormalities in various ways by careful planning and good coordination.

Results of the present study showed that receiving emotional support from the family and close friends is effective in restoring mental peace and decreasing the anxiety and stress of women. In fact these women believed that family’s support is effective in providing empathy, and decreasing the feeling of guilt and self-blame. According to them, in this situation, cooperation of the family members and close friends could be a significant help in balancing the situation and returning to normal condition. Also, in the study of Anderson, presence of a friend or a relative was effective in resolving the concerns and adjustment with the loss [13]. Similar to the present study, in a study, most of the women expected to be supported emotionally by their family and friends and lack of sufficient support influenced mothers’ decisions about finding other supportive resources [15]. According to the results of previous studies, the quality of emotional support from the family and friends would change overtime and so these women would feel they have not been supported and have been left alone in their mourning. This decrease in the emotional support would make women search other support resources, although they did not expect it at the time of pregnancy termination [16]. Undoubtedly, presence of constant emotional support from the family and friends in accordance with the special condition of these people is effective in improving their psychological compatibility with the conditions of pregnancy termination due to fetal abnormalities.

Results of the present study showed that experiencing the loss of a fetus is a weakening experience for women, which is accompanied by lowered self-esteem and a sense of loneliness. Therefore, meeting people with similar experiences in the past and benefiting from their experiences for accepting the incident, showing care and receiving counseling and returning to normal life is effective. In a study, willingness to meet people with similar experience online and anonymously was also mentioned as an effective factor in making the decision about participating in supportive systems [15]. In this regard, Cacciatore et al. in their study showed that, in supportive groups, where people share their stories, the process of coping with the trauma would be formed. This relationship between two or more people with similar experiences would help the mournful person find a meaning to their experience [17]. In the study of Roehrs, mothers mentioned the difficulty of expressing their experience to their friends and family and indicated the benefits of support from the group of peers to accelerate reaching the acceptance stage [18]. Since, in these women, mourning for a child that was never born and they have no memory of is difficult, and also the existence of the abnormality has minimized their sorrow for others, these silent mourners need to communicate with those who have similar experiences to them more than ever [16, 19]. In this situation, women would accept information from their peers more easily and more openly discuss their issues and problems with them.

Generalization of the results of the present study should be performed cautiously due to the qualitative nature of this study. Although qualitative studies have no claim in generalizability of the results, they could be important for those who are willing to apply their results and consider it as a limitation. In this regard, the effort has been made to increase the accuracy and power of data transferability by selecting participants with maximum variety, and receiving guidance and supervision from experts and external reviewing.

This study has presented the supportive needs of women who have experienced pregnancy termination due to fetal abnormalities from different aspects. It appears that, by determining and emphasizing on these needs and presenting them to the health system authorities, effective strategies for improving constant participation of the husband, family members and friends and also peers along with other professional care for these people could be provided and the conditions for their rapid return to normal life would be provided.