Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner

Expecting a child is a life-transforming event [1], and expectant fathers go trough a process of adaptation to a parental role during the course of pregnancy, with increased emotional involvement as the pregnancy progresses [2–4]. This process of adaptation may be experienced as a stressful period, involving a number of psychological difficulties. The lack of tangible evidence of the pregnancy may make it feel unreal, resulting in attachment difficulties for expectant fathers. They experience a change in the relationship with their pregnant partner, with a discrepancy of the expectations and needs within the couple. Moreover, the situation requires a change in their core identity, with an adjustment to a new role as a parent, rather than a partner [4]. Although the needs of both expectant parents are acknowledged as equally important in healthcare, expectant fathers often feel excluded from the prenatal care, calling attention to the need for organizational changes and studies that address their specific experiences [5].

The obstetric ultrasound examination of pregnant persons in the second trimester of pregnancy, which involve the possibility to detect fetal anomalies, have been implemented as a part of maternity care in many countries around the world [6]. Expectant fathers consider the this examination an important step in their journey to become a parent [7], and desire to be involved in these pregnancy-related activities [5, 8, 9]. The examination is viewed by expectant parents as an opportunity to get a visual confirmation of the pregnancy, and considered an obvious choice because of the longing for the child [8]. However, many lack knowledge about the medical purposes of prenatal screening procedures [10, 11] and are thus often ill prepared for adverse findings, such as a prenatal diagnosis of a fetal anomaly [11–16].

Congenital heart defects are the most common of the fetal anomalies [17], and approximately one in five cases are diagnosed during pregnancy [17]. However, there is a great variation in the severity and prognosis depending on the nature of the defect [18, 19], and most of the severe defects are today prenatally diagnosed [17]. Research has shown that pregnant persons faced with a prenatal diagnosis of fetal anomaly experience a major life crisis [16, 20], involving a loss of the joy of being pregnant as well as the expected health of the fetus [16, 21]. Following the detection of a fetal anomaly, expectant parents may be presented with the option of terminating the pregnancy, a decision-making process that involves many informational and ethical considerations [22–27]. When told about the diagnosis, expectant parents move to a phase of trying to gain meaning and knowledge in order to reach an informed decision whether to continue or terminate the pregnancy [13]. However, an informed decision requires interpretation of complex medical information [28], and many persons who terminate the pregnancy experience the decision difficult to reach [22]. Expectant parents consider the decision to terminate the pregnancy to contradict deep parental instincts to protect one’s unborn child [29]. The decision entails a combination of chosen loss and lost choices, as the pregnancy is wanted while the fetal malformation is not [16]. Those faced with a prenatal diagnosis of fetal anomaly in the fetus carried by their pregnant partner show high levels of psychological distress and depression at the time of the diagnosis [30, 31]. When the pregnancy is terminated, a considerable proportion show symptoms of post-traumatic stress and depression, up to several months after the abortion [32, 33]. Expectant parents who continue the pregnancy show high levels of anxiety and depression during pregnancy [31], with expressions of intensive and varied positive as well as negative emotions [34, 35].

Research is scarce concerning the needs of support among expectant fathers [4] and their experiences when faced with a prenatal diagnosis of a fetal anomaly [20, 36]. Previous research has primarily focused on their role as supporters, rather than their own feelings and experiences [36]. Consequently, inductive qualitative research is needed to gain deeper insights into the experiences of these individuals. With this study, we wanted to address the scarcity of inductive research on the needs of care among this population, by giving attention to their own experiences in connection to the diagnosis and decision-making regarding whether to continue or terminate the pregnancy. Thus, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner.

The findings are portrayed through five themes: (1) Trying to support the partner during an emotional shock, (2) the importance of reaching an informed and joint decision, (3) the loss of a wanted child through an emotionally intense pregnancy termination, (4) ambivalent feelings of anticipation and worries about the birth, and (5) worries of recurrence in future pregnancies.

The respondents experienced emotional distress in connection to the diagnosis and emphasized the importance of an informed joint decision. When the pregnancy was terminated, the procedure was described as emotionally painful, with health professionals not attentive to their needs for support. When the pregnancy was continued, respondents described worries related to the postnatal situation and wished to be involved in the planning of the postnatal care. Regardless of the decision to continue or terminate the pregnancy, respondents described that they tried to set their own needs aside to support their partner. According to previous studies, male partners faced with a prenatal detection of fetal anomaly hide their anxiety and grief in order to be strong for the pregnant person [12], resulting in concealment of their actual needs for support [41]. The results of this study confirm this, and bring to light that they, similar to pregnant persons, experience emotional distress following a prenatal diagnosis. The fact that expectant fathers put their feelings aside to be attentive to the supportive needs of their pregnant partner calls attention to the risk of overlooking their need for professional psychosocial support.

Previous studies report that women who terminate the pregnancy due to a fetal anomaly need compassionate care, but occasionally experience insensitivity and non-responsiveness from health professionals [15]. The findings of this study indicate that some male partners experience similar issues, and do not feel included in the abortion care. Moreover, the findings raise awareness of their vulnerable situation during pregnancy terminations, which is an incentive for health professionals to systematically assess and attend to the needs of both the pregnant person and their partner during this stressful process in their lives. A limited amount of research has been conducted concerning the psychological consequences of perinatal loss among male partners. The few reports that exist show that they grieve after a perinatal loss, although with less intensity and with other types of coping mechanisms than those of women [42]. Studies report that women suffer from psychological consequences years after a pregnancy termination due to a fetal anomaly [29, 32, 43]. This study provides an understanding about the emotional reactions among males faced with a prenatal diagnosis, namely the loss of a wanted child and worries about the risk of recurrence in future pregnancies. Considering the fact that we interviewed respondents a few weeks after the diagnosis, we cannot conclude the presence of complicated grief, defined as symptoms of grief that last at least 6 months [44]. However, continuity of care and adequate follow-up routines have previously been identified as important aspects of care for women terminating a pregnancy due to a fetal anomaly [45, 46]. The findings reflect that males need to be included in adequate follow-up routines, and illustrate the need for care that expands beyond the initial period following a pregnancy termination due to a fetal anomaly. To promote reproductive health and realistic expectations concerning the risk of recurrence, health professionals should take steps to address the thoughts and worries concerning future pregnancies. An example of an initiative that might promote reproductive health after a pregnancy termination due to a fetal anomaly is interconceptional counseling for couples, in other words care that focuses on the time between the termination and a new pregnancy or an informed decision not to conceive [47]. More research is needed to investigate appropriate timing of such counseling and its potential effects of promoting reproductive health among women and their partners after a pregnancy termination due to a fetal anomaly.

In line with other studies [21, 48, 49] expectant fathers with a continued pregnancy expressed ambivalent feelings about the birth of their child, suggesting the need for continuous care and support during the remainder of the pregnancy. Among expectant parents to prenatally diagnosed infants, gender differences may exist in the early postdiagnosis stage, with regard to psychological distress and quality of life. Nonetheless, both mothers and fathers show high levels in comparison to parents to healthy infants [31]. Moreover, 1 month after the disclosure, no gender differences exist with regard to emotional reactions [35, 50], and intracouple congruence of emotional reactions is frequent [50]. Consequently, health professionals must recognize that the diagnosis may result in an increased risk of developing psychopathological symptoms for both expectant parents when the pregnancy is continued, and include both of them in their assessments of the need for psychosocial support. Following the diagnosis, expectant parents move from grief to preparation as the pregnancy progresses [51] and are concerned or worried about various issues [21, 48]. In summary, the findings illustrate the importance of including both of the expectant parents in the health care planning of the postnatal situation, and the need for team-based efforts that address the worries of the postnatal situation expressed by the respondents.

This qualitative study adds insights into the existing literature, with regard to the emotional and cognitive experiences during the diagnosis and decision-making among males presented with congenital heart defect in the fetus carried by their pregnant partner. The findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis of congenital heart defect in the fetus. Despite experiencing an emotional shock in connection to the diagnosis, expectant fathers may put their own needs aside to support their pregnant partners. Consequently, they are at risk of not being adequately supported, and we suggest that professionals must always offer professional support to both expectant parents faced with a prenatal diagnosis of congenital heart defect in the fetus. This includes the initial emotional shock, the decisional process and, depending on decision reached, the termination or continuation of the pregnancy. Those with experience of pregnancy termination consider their decision as an option without alternatives, and describe the decision as an inhumane choice that contradicts their instincts to protect their unborn child. The experiences of insufficient support in connection to the termination calls attention to a need for abortion care that is inclusive, to adequately meet the emotional needs of males who experience a prenatal loss. Subsequent to the termination, these persons express worries of recurrence in future pregnancies, which needs to be addressed and followed up in order to promote realistic expectations about their reproductive futures. When the pregnancy is continued, partners express worries about the postnatal situation, raising awareness of the importance of continuous support during the remainder of the pregnancy. They need to be actively involved in the health care planning of the postnatal care, to feel prepared for the birth of the expected child.