Support for Physiological Grieving After Perinatal Loss

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Beginning in 1980, professional literature (primarily international; in our professional literature this issue still receives only marginal attention) began to give increased attention also to the issue of failed pregnancy as painful loss rather than merely a simple obstetric event. The issue of adapting to a failed pregnancy has become the subject of intensive research by many professionals in nursing, midwifery, obstetrics, psychiatry, psychology, social work, theology, bioethics, and other related disciplines.

A failed pregnancy can be defined as any pregnancy that ends in miscarriage (spontaneous or induced), intrauterine or intrapartum fetal death. In foreign literature (especially in the Anglo-Saxon literature), the term perinatal loss is used, which more precisely captures the essence of the issue of failed pregnancy.

Perinatal loss (perinatal loss, pregnancy loss) refers to intrauterine fetal death, spontaneous miscarriage, induced termination due to fetal anomalies and maternal health reasons, stillbirth, and infant death in the early postpartum period, with deep grief and sorrow as the expected parental response (Gorrie et al., 1994, Mattson et al., 1993, Urbanová, 2004).

Some experts distinguish between natural and induced fetal death and do not include pregnancy termination under the concept of perinatal loss. Today, however, acceptance of induced abortion, especially at later stages of pregnancy, as perinatal loss is increasing. This is also confirmed by many studies examining the impact of induced abortion on a woman's mental state (Hyde Bryar, 1997, Shaohua 2021, Urbanová, 2004).

This type of loss can impair both the physical and psychological well-being of parents and strain family relationships. Recent studies indicate that personal responses to perinatal loss can be much more intense than initially assumed.

A similarly specific situation arises when a prenatal diagnosis in the fetus is determined to be incompatible with life, or limits survival to a short period after birth, and parents do not decide on an induced abortion but on “sharing” (Resolve Through Sharing - RTS). They choose to have the child born and then provide perinatal palliative care. In this situation, parents should receive continuous supportive care integrated through perinatal palliative care. Supportive care that should aim at healthy grieving should begin at the time the current or suspected diagnosis is made and continue after birth and after the child's death (Figure 1).

Figure 1 Models of supportive care in prenatal diagnosis of adverse prognosis

“Support care” means the provision of emotional, physical, social, spiritual, and informational support. The purpose of support care is primarily to support the family’s healthy grieving process, to accept and respect the rights of parents and children, to implement processes that support healthy grieving, to create appropriate psychological and physical conditions for parents to say goodbye to the child, and to ensure an empathic approach to the bereaving family (Magyarová, 2005).

Within emotional support for bereaved parents, the following nursing interventions are appropriate:

• Ensure comfort, privacy, and sufficient time space (these measures allow grieving parents to express sorrow and help prevent situations such as contact with a newborn of another mother, etc.).
• Speak with parents and explain the need for open expression of feelings.
• Ask the father about his feelings and questions (often, fathers show fewer emotions than mothers, and yet may be burdened both by supporting the mother and by their own grief and sorrow).
• Show empathy – verbally (e.g., “I am sorry that this happened.”), nonverbally (e.g., holding a client’s hand during conversation, silent presence).
• Use elements of therapeutic communication that support verbalization of feelings (e.g., “Could you tell me more about ...?”, “What are you afraid of?”; it is also useful to use statements with open endings – e.g., “It must be very hard for you...” – or reflection of feelings expressed by clients – e.g., “Do you feel guilty because you were not able to stay calm in bed?”). These examples of open communication encourage families to express the feelings caused by traumatic loss, which is the first step toward overcoming it.
• Support parents in open communication with their other children. Children may not understand the full meaning of the situation, but this approach lays the groundwork for future understanding and trust in the family. When speaking with a sibling of a deceased child, avoid the following formulations: “...it won’t hurt him/her anymore...” or “he/she is now with God or deceased relatives...” or “...has gone...” Such information is confusing for a child. Explanations should be brief, truthful, and direct.
• If parents named the fetus, use this name when speaking with them. In early-pregnancy loss, do not use the term “miscarriage,” but speak of “loss of a daughter/son.”
• Use relaxation exercises (a psychologist or another trained health professional can lead them for several patients at once).
• Help create memories (if possible, provide ultrasound images of the fetus, discuss fetal development stage during perinatal loss, discuss the possibility of burial, ensure contact with the deceased child when clinically appropriate (individual assessment required), provide family keepsakes that may evoke memories. Some maternity hospitals prepare a remembrance bundle for parents containing, for example, a lock of hair, a photograph, or fingerprint imprint, clothing, or a blanket). If the family currently refuses keepsakes, they should be retained for a later time (at least one year); families often request them later.
• Allow families to see their child whenever they request it, but first prepare them for possible anomalies, describing them without unnecessary emphasis or taking an overly negative or extreme emotional stance.
• Limit the number of staff members the family must come into contact with.
• Speak with the family about the physiological grieving process and ways to support it (Bowles et al., 2000, Mattson, 1993, Neubert et al., 1999, Leifer, 2004, Lehotská, 2012).

Care for biological needs includes:

• Continuous routine post-abortion or postpartum nursing and medical care for the mother.
• Care for the deceased child with dignity; when a live fetus is present, provide “comfort care,” respectively perinatal palliative care.
• Handling remains as one would handle a living child.
• Monitoring of psychological and somatic state. If physical problems occur, they may reflect somatization—the transfer of psychological stress into the body (Gold, 2007, Lehotská, 2012).

Social and spiritual support can be ensured through the following interventions:

• Ensure contact with a support network.
• On request, allow contact with a priest or other spiritual caregiver.
• Inform the client and her family of options for further support resources (psychologist, psychiatrist, support groups, internet helplines on this topic...). If they are interested, or if described maladaptive signs of adaptation are present, ensure contact with them.
• Support the family in maintaining existing social contacts and building new ones.
• Provide value-based support and consider whether the woman is under pressure from her surroundings (termination decision). If she acts under pressure, she may perceive the situation as a double failure. Under no circumstances comment on or judge the woman’s actions and decisions (Bowles et al., 2000, Mattson et al., 1993, Neubert et al., 1999, Leifer, 2004, Lehotská, 2012).

Provision of informational support and education is recommended in the literature as follows:

• Inform parents about possible emotional changes and respect the individual phases of grief that the bereaving family goes through. Knowledge of the stages of grief allows the nurse (midwife) to assess whether the mourning process is proceeding normally, or whether any family member is experiencing dysfunctional grief. Knowledge of the stages in the grieving process helps understand client reactions and behavior and to respond appropriately. For example, searching for blame is a normal part of grief and is not necessarily directed specifically against healthcare professionals.
• Monitor psychological and emotional states of family members, even after the mother is discharged from hospital (including cases where no signs of pathological adaptation were detected during hospitalization). Assess psychological and emotional state one week, one month, and one discharge period after leaving (in person or by telephone). If pathological reactions occur, monitor more often. After one year, a follow-up visit is recommended with reassessment of emotional and psychological status.
• Reinforce the explanation provided by the physician and use simple language (e.g., what the problem was, why this happened, etc.). This is important because people in grief often do not listen to or fully understand explanations the first time, as they cannot concentrate (Bowles et al., 2000, Mattson et al., 1993, Ney et al., 1998, Neubert et al., 1999, Leifer, 2004, Lehotská, 2004, Lehotská, 2012).

If we want to provide high-quality, individualized nursing care to women and families with failed pregnancy, healthcare providers need to recognize the need to become members of the bereavement support system for grieving parents.

Some obstetric, pediatric, or neonatology units, mainly abroad, develop guidelines, documentation, nursing care plans, and standardized procedures for families experiencing failed pregnancy. Some workplaces even require their staff to complete courses and training (bereavement programs). Training activities are organized by universities, hospitals, and/or religious organizations.

Aim

To determine the extent of use of specific nursing interventions that minimize the risk of maladaptive reactions to perinatal loss.

Sample and methods

The observed sample consisted of nurses and midwives in settings (gynecology and obstetrics departments, neonatology units, ICU) where we can assume relatively frequent contact with women and families who have experienced perinatal loss.

To collect data and meet the set objective, we used an empirical questionnaire method. Its relevance in our work lies in ensuring anonymity and thus obtaining more objective information than might be obtained through direct contact with respondents.

The survey was carried out at selected sites in Slovakia. Administration of the questionnaire was combined. We distributed 130 questionnaires, and 106 were returned. The response rate was 81.5%.

Results

Using a numeric scale, we assessed the extent to which staff integrate into care for women (families) with perinatal loss the interventions that contribute to a healthy grieving process. These were specifically the following approaches (expressed as numbers 1–19 in Table 1): 1 – we use measurement and assessment tools when identifying maladaptive reactions, 2 – we conduct an open conversation with the woman about causes of perinatal loss, 3 – we ensure maximum privacy by placing her in a single room, 4 – we have an open conversation with the woman about the child (stage of development, appearance), 5 – we encourage the woman to express feelings openly and ask actively about her feelings, 6 – we inquire how the situation is perceived by other family members (father, siblings), 7 – we try to suppress thoughts about this event, 8 – we monitor the psychological and emotional state of the woman after discharge, 9 – we explain to parents how the grieving process proceeds, 10 – we allow unlimited contact with the family, 11 – we inform parents about the possibility of burial of the fetus even in cases of pregnancy termination or pre-delivery removal, 12 – we ensure contact with a psychologist, 13 – we recommend contacting support groups, 14 – we allow direct contact with the deceased/dying child, 15 – we provide parents with specific memories of the child (ultrasound image, photograph, lock of hair, fingerprint imprint), 16 – we prescribe psychopharmaceuticals, 17 – our workplace organizes remembrance events for families who have lost a child, 18 – we limit the number of staff involved in the care of a woman after perinatal loss, 19 – when parents refuse memento items, we archive them for some period.

The scale expressed the degree to which specific interventions were used in care for women with perinatal loss, with a score of 1 meaning never, 2 rarely, 3 sometimes, and 4 almost always.

Table 1 Use of specific nursing interventions

Based on respondents’ answers and their summary statistics, we can state that the most frequently used intervention was allowing unlimited contact with the family (x̄ = 4, x̃ = 4). Most respondents stated that sometimes, respectively almost always (x̄ = 3,68, x̃ = 4), they try to suppress thoughts about this event; however, according to the available literature, efforts to suppress thoughts about a painful event may form the basis for the development of complicated grief and various maladaptive reactions.

From the summary statistics, it follows that nurses and midwives in our sample use in nursing care for women with perinatal loss only occasionally (x̃ = 3): open conversation about birth/abortion (x̄ = 3,40), prescribing psychopharmaceuticals (x̄ = 2,92), and placing the woman in a private room (x̄ = 2,57). Rarely (x̃ = 2), they implement: ensuring contact with a psychologist (x̄ = 2,29), open discussion about the child (stage of development, developmental anomalies, and appearance; x̄ = 2,21), active exploration of the woman's feelings (x̄ = 2,21), direct parent-to-child contact with the deceased child (x̄ = 2,21, mostly in neonatology units), and information about the option of burial of a terminated or prematurely removed fetus (x̄ = 2,19). According to the sample’s responses, they never (x̃ = 1), or only rarely, use standardized measurement and assessment techniques in diagnosing maladaptive reactions (x̄ = 1,55), monitor a woman’s psychological and emotional state after discharge (x̄ = 1,51), explain how the grieving process proceeds (x̄ = 1,51), or assess how other family members are coping with the situation (x̄ = 1,51). Similarly, they never (x̃ = 1) or rarely provide concrete memories of the child (ultrasound image, footprint, photograph; x̄ = 1,21), conduct remembrance activities (x̄ = 1,21), limit staff contacts with the woman after perinatal loss (x̄ = 1,21), archive keepsakes (x̄ = 1,21), and recommend support groups.

Table 2 Use of specific interventions (median scale value)

Table 2 shows the extent of use (median value) of individual nursing interventions.

Discussion

Di Marco et al. (2002) state that the grieving process after the loss of a child is highly individual, and that the interest and approach of healthcare providers represent one distinct factor that significantly influences this process.

While mourning after the death of a loved one was already studied by Freud in 1890, bereavement of parents who lose their child came to the center of attention of professionals (psychologists, psychiatrists, nurses, midwives, gynecologists, social workers, etc.) only in the 1970s.

Early studies viewed women’s grieving as a progressive, linear syndrome or process that occurs in certain stages and steps, but is not long-term. The current revised view defines grief as an unbounded in time, dynamic, and pervasive individual process (Capitulo, 2002).

Perinatal loss can be a cause of severe distress for the woman herself, and also for her partner or other family members, and it requires a highly sensitive, evidence-based approach from healthcare professionals (Mansell, 2006).

In our context, care of women with perinatal loss focuses mainly on managing somatic complications related to failed pregnancy, and only minimal attention is paid to the psychological response to the child’s loss or to the grieving process itself. For this reason, we aimed to map the extent of use of specific interventions that may contribute to supporting healthy grief in workplaces where we assume the most frequent staff contact with women/families who have experienced perinatal loss.

Among the least used specific interventions (mean score 1,21 = never/rarely), nurses and midwives reported low use of informing about support groups, providing and preserving remembrance items, organizing remembrance activities, and limiting the number of staff in contact with patients who have experienced perinatal loss. We believe this low use of these interventions (and many others) is largely influenced by the character of work and routine procedures at individual workplaces, as well as by the absence of a service network and staff shortages. Compared with other countries, we do not have bereavement support services that women and their families with perinatal loss experience could use. In Australia, a specialized unit for pregnant women with perinatal loss was even created (Pregnancy After Loss Clinic) (Meredith, 2017).

Inati (2018), in a study where she followed women with complicated grieving, reports that up to 90% of women used professional counseling in this area and 50% used support groups.

Provision of remembrance items is a common and routine part of nursing care in many countries, confirming the loss, confirming that the pregnancy was real, and contradicting parental assumptions about the degree of fetal damage (Robinson et al., 1999, Leifer, 2004).

At the beginning of the 1980s, professional literature began to discuss the need to provide parents with concrete memories of the child in the event of loss even before birth. In 1988, in response to requests from parents with perinatal loss experience, this practice began to be tested in clinical care in the USA. Clinical practice and research in perinatal loss at the beginning of the 1990s (Lemmer, 1991, Menke, McClead, 1990, Ryan et al., 1991) already pointed to the positive effect of remembrance items on the grieving process (Thompson, 2001).

Besides providing remembrance items, some hospitals, especially in Anglo-Saxon countries, organize remembrance services for “lost” children in the same year. Some families also practice repeated annual remembrance activities, most often charitable events, which allow and intensify renewed memories of the lost child (Robinson et al., 1999).

It is necessary to monitor not only how the woman copes, but also her partner and possibly other family members. This intervention is never used, or used only rarely, by nurses and midwives in our sample (mean score 1,51).

Johnson and Puddifoot (1996), Vance et al. (1995), and Overpack et al. (2002) studied men whose partners had miscarriages. Using similar self-assessment scales and standardized questionnaires among men and women, they found some common (elevated depression scores) and some distinct expressions of grief (men showed less external expression of grief, e.g., crying, but had a greater need to talk about the loss, and expressed more anger and aggressive reactions). In long-term studies (Overpack et al., 2002), it was confirmed that men exhibit shorter periods of anxiety and depression, but in later periods they tend toward aggressive behavior and excessive alcohol consumption (Klier et al., 2002).

Meredith et al., 2017 studied how women with perinatal loss perceived support for their partners. Although some reported that men sometimes had trouble participating, they rated this possibility very positively. They said that it was “calming” for the partner, that he had someone to turn to if needed, and they greatly valued that “someone is taking care” of their partner.

Objectively evaluating adaptation to failed pregnancy, detecting early maladaptive signs, and distinguishing normal responses to loss from dysfunctional grieving manifestations is made possible through measurement and assessment tools. Based on our findings, the use of these tools is again very low (mean score 1,55).

With the increasing professionalism of nurses and the drive toward nursing autonomy, the responsibility of nurses in initial, ongoing, and final assessment for both clinical and research purposes is increasing. Measurement and assessment instruments are needed to build an information database that underlies quality nursing care. These data also demonstrate the level of care provided and professional competence. Such a tool can become an integral part of procedural standards, nursing forms, and protocols. In selecting an assessment tool, it is important, besides validity and reliability, to consider cultural sensitivity, interdisciplinary character, ease of administration, and whether it is a standardized instrument regularly revised by clinical experts (Bóriková et al., 2009).

Very low implementation scores (x̄ = 1,51) were found for interventions concerning monitoring of psychological state after discharge and explanation of the grieving process. Exactly in persons who showed no or only minimal trauma responses shortly after loss, marked symptoms of dysfunctional grief appeared later. In connection with perinatal loss or post-abortion syndrome, we frequently encounter intensification of maladaptive reactions during periods that are in some way significant for the loss—so-called anniversary reactions (an anniversary reaction); (Hašto, 2005).

Monitoring psychological state after discharge and timely intervention is considered a basic element of support for healthy family grieving (support care). Inati et al. (2018), in their study of women meeting criteria for complicated grief, reported that women identified a need for retraining hospital staff in this area and counseling in this field.

A median score of 2 (implemented only rarely in practice) was reached for interventions such as ensuring contact with a psychologist (x̄ = 2,29), open conversation about the child (development stage, developmental anomalies, and appearance; x̄ = 2,21), and active assessment of the woman’s feelings (x̄ = 2,21). Even though therapeutic communication that promotes verbalization is one of the key interventions, its implementation is still not at an adequate level. Compared with other countries, for example (Inati, 2018), contact with a psychologist was used by 66% of women with signs of complicated grief. In a study conducted in 2012 (Lehotská, 2012), we found that although they had the opportunity to use psychological help, women often refused it. However, when women sought this help, they rated it as highly effective. We believe this is largely due to persistent prejudices, but also to the lack of informational support from healthcare providers and increasingly limited availability.

Despite legal regulation allowing burial of stillborn, miscarried, or prematurely removed human fetuses, parents are informed about this option by healthcare providers only rarely (x̄ = 2,19, x̃ = 2), and according to the reported sample, staff more often respect parents’ wishes if they request this option than actively informing them about it. Burial and funerary rituals allow parents to express pain, experience support from family and friends (expressions of sympathy), and help siblings accept the sibling’s death (they know where the grave is) (Stringham, 1982).

Many mothers who lose a child in later stages of pregnancy express the wish to hold the baby, a wish with which hospital staff often hesitate to comply. There is broad consensus (at least among psychologists and experts in this issue) that parents should be encouraged to see, touch, and hold the child. If an expected newborn death in the early postpartum period is anticipated, parents should be allowed to visit the newborn, participate in care, and be present when the baby dies (Hašto, 2005).

In our observed sample of nurses and midwives, allowing direct parental contact with the deceased child reached a mean score of 2,21 (rarely).

An element of informational support is also an open discussion about the birth/abortion, its circumstances and causes (in our sample used sometimes, x̃ = 3). Prescribing psychopharmaceuticals (x̄ = 2,92) and placing the woman in a private room (x̄ = 2,57) are performed sometimes by respondents (x̃ = 3). Private-room placement allows the family to be alone and spend time with the child. According to our respondents, unlimited family contact is allowed almost always (x̃ = 4, x̄ = 4).

Overall, a relatively low degree of use of specific nursing interventions contributing to physiological grieving was confirmed (mean score 2,09 = rarely), while almost always (x̃ = 4, x̄ = 3,68) staff show a tendency to suppress the patient’s thoughts about this traumatic event, a process considered a risk-prone approach regarding possible later maladaptive reactions. Similarly, the relatively frequent use of psychopharmaceuticals without additional supportive steps is considered a rather ineffective approach to preventing complicated grief.

As in 2012 (Lehotská, 2012), when we also examined, among other things, the extent of use of specific supportive approaches among women and their families with experience of perinatal loss in a sample of 160 women, we found a low level of use of new, revised approaches for this specific patient group.

We agree with the view that implementing the latest scientific evidence on supporting physiological grieving into care for women/families with perinatal loss can contribute to greater effectiveness, humanization, and individualization of care, and thereby reduce the prevalence of pathological forms of adaptation to child loss.

Author: PhDr. Mária Lehotská, PhD. Catholic University in Ružomberok, Faculty of Health Sciences, Department of Nursing

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