Effects of perinatal and neonatal death on surviving parents - Literature review

While death of a child may be seen as particularly upsetting in most societies, death of a perinate or neonate is often minimized. Perinatal death includes stillbirth and death in the first week after birth while neonatal death encompasses the first 28 days of life after birth. According to the World Health Organization, neonatal deaths account for one in every three deaths under the age of five, particularly in developing nations. Based on an increase in education, access to medical care, nutrition and technology advances, rates of neonatal death and stillbirth are decreasing worldwide, though at much faster rates in developed nations [9].

Neonatal deaths and stillbirths most often are caused by poor maternal health, inadequate care during pregnancy, inappropriate management of complications during pregnancy and delivery, poor hygiene during delivery and the first hours after birth, and lack of newborn care. Major factors contributing to the increased likelihood of neonatal death and stillbirth include the mother’s status in society, their nutritional wellbeing, early childbearing, multiple pregnancies close in time, and improper medical care. In regard to medical complications during pregnancy and birth include obstructed labor, fetal malpresentation, birth asphyxia, trauma, and increased rates of infection in both mother and baby.

One politically and socially debated issue includes the mother’s choice of abortion, being the deliberate termination of a pregnancy most often during the first 28 weeks of pregnancy. Legality of abortion varies by region, meaning certain areas allow up to third trimester abortions while others allow essentially no pregnancy terminations at any stage of development. Abortions are most often performed on young, unmarried women, or women or fetuses with health complications where carrying to term would endanger the mother or baby. Political debates get complicated when balancing religious beliefs with instances of rape or incest, as well as setting the point of fetal viability. Because these abortions are often at such an early stage of development, and because they are an optional procedure elected by the mother, they do not count as perinatal deaths in most cases because they are not stillborn.

As the research shows, the effect of perinatal and neonatal death is directly correlated with an increase in anxiety and depression related symptoms for both the mother and the father. Studies presented are limited in the sense that they all controlled for language and location of study, being English and in the United States and Sweden, both of which are developed nations. Because the majority of perinatal death and neonatal death occur in developing nations, these studies do not focus on the most important section of research. However, perinatal and neonatal death in developing nations are often caused by lack of sanitization, medical care and access to adequate nutrition, where in developed nations the cause is often idiopathic or due to genetic malformations. Research provided focuses solely on the bereavement of the surviving mothers and fathers, instead of all family members, and the deaths of the children avoid subjects such as miscarriage, abortion, and accidental death of the infant.

Literature Review

Badenhorst et. al. (2006) specified on the effects of perinatal death on fathers, including neonatal death and stillbirth. This research included a meta-analysis of studies published in CINAHL, MEDLINE and PsycINFO databases from 1966 to 2005, discluding any papers that were in languages other than English, dissertations, reviews, books without original data, intervention studies, studies of parents without separate results for fathers, studies where perinatal loss was not distinguished from losses, first person accounts of a single experience and studies reporting on fewer than five fathers. This research culminated in the finding of 77 potential papers, which were then screened by two others and eliminated down to 17 final papers to be included in the analysis. Because this is a meta-analysis, methodology of various studies varied.

Results from these studies mainly showed the difference between qualitative and quantitative data. Qualitative data routinely showed that fathers described classical grief responses, though they routinely showed less guilt than the mothers. They often described the death impacting their social role and the arousal of conflict between the father and his spouse. Quantitative research, however, often showed symptoms of anxiety and depression compared to classic grief responses, though these are also reported at lower rates than the mother. Specifically, in instances of stillbirth, quantitative data shows that fathers may be more likely to develop post-traumatic stress disorder than they are with other forms of perinatal death. Badenhorst et. al. recommends that more research is needed in order to understand the relationship between perinatal death and paternal grief, with an emphasis on how father’s roles as caregiver is often minimized when dealing with the death of a neonate.

Rowe et. al. (1978) published a retrospective study focused on how perinatal death effects the remaining family members. Methodology included telephone interviews between 10 and 22 months following the death of their perinate or newborn of 26 mothers. Of the families involved in this study, only half of the familied had obtained information regarding the cause of death and/or the risk of reoccurrence during their initial hospital experience. After months of between interviews, a total of 22 mothers had an adequate understanding of both, and 4 mothers knew neither.

Results showed that six of the 26 mothers showed signs of prolonged grief reaction (12 to 20 months), and that mothers who either had a surviving twin of the deceased infant or who has a subsequent pregnancy within five months of the death were at higher risk for prolonged grief. Of the mothers who were informed of the reason for death or risk of reoccurrence, as well having no prolonged grief, 60% felt “totally dissatisfied” or only “partially satisfied” with the information they received and the manner in which they received it. Conclusions made included how follow-up phone contact or in person contact increased understanding of the death, as well as that mothers who received follow up contact of either kind were more likely to be satisfied with the information they received.

Gold et. al. conducted a meta-analysis focusing on how parents review hospital care after suffering a perinatal death event. Their methodology includes an evaluation of more than 1,100 articles published between 1996 and 2006, focused on fetal death in the second or third trimester, as well as neonatal death in the first month of life. Studied were limited to those that were in English, those who evaluated U.S. hospital care, and contained direct parent data or opinions. 60 eligible studies were obtained which covered over 6,200 patients. Overarching data focused on five aspects of recommended care including obtaining photographs and memorabilia of the deceased infant, seeing and holding the infant, labor and delivery of the child, autopsies and options for funerals or memorial services.

Conclusions made include how there is an apparent room for improvement in perinatal death care. Parents reported various aspects of care that they deemed helpful, including time and contact with their deceased infants, being given options about labor and delivery, burial, receiving photographs and memorabilia, and having appropriate hospital follow up. This report emphasizes how care often follows the recommended guidelines for treatment of perinatal death and explains how mothers reported that they had few choices presented to them and inadequate information presented to them. Recommendations made include how hospitals, doctors and nurses should increase parental choice about timing and location of delivery and postpartum care, encourage parental contact and viewing of the deceased infant, and that they should facilitate the provision of photos and memorabilia.

Boyle et. al. (1995) studied how the stress response of parents suffering through a perinatal loss compared to parents with a live born child. Their study included 194 mothers and 143 fathers of perinatal death, and 203 mothers and 157 fathers with live children. Boyle et. al. measured psychological distress based on scales of anxiety, depression and alcohol use. Measures were obtained at 2, 8, 15 and 30 months post infant death. Results showed how the bereaved mothers showed significantly more anxiety and depression than the controls at all four time periods. Bereaved fathers showed both increased anxiety and depression, but only at two months post death. Fathers also showed heavy alcohol use at both two months post death as well as 30 months. Measurement scores showed significant differences between mothers and fathers at all four time points for anxiety and depression, though alcohol use differences were significantly different at two- and eight-months post-death. These results clearly emphasize the differences in psychological bereavement following perinatal and neonatal death, with an increased impact of anxiety and depression long term in mothers and a trend of increased alcohol use in fathers.

Radestad et. al. (1996) conducted a study focused on factors that may predict long term psychological complications among women who have a stillborn child. The methodology included a nationwide population-based study using epidemiological methods, including 380 experimental subjects and 379 control subjects from Sweden. Each experimental subject had still born child and each control subject had a non-deformed live child birth. When comparing the self-reported anxiety levels of the experimental group to the control group, there was a significant increase in the experimental group with a 95% confidence interval. One of the largest findings of this study focused on the differences in anxiety based on the length of time between diagnosis of intrauterine death and removal of the fetus. Data showed a difference of 25 hours between was the beginning of anxiety related symptoms. Another anxiety inducing events was not being allowed to see the child for as long as the mother would have like, as well as not being provided a token of remembrance. These findings recommend that health care professionals should induce a delivery of the deceased baby within 25 hours of diagnosis, should allow the mother to interact with the deceased baby for as long as they feel necessary, and to facilitate the provision of a memorabilia to the parents.

Forrest et. al. (1982) studied the impact of a structured counseling system for parents who have suffered perinatal death. Methodologies include following 50 families who were split into two groups, one who received structured counseling and a control group who only received routine hospital care. Six- and 14-months post death, researchers followed up with the surviving parents in order to record their emotional impacts and monitor their bereavement levels. Assessments were based on two self-rating scales, the general health questionnaire and the Leeds scale.

In the supported group, two of 16 mothers showed a psychiatric disorder six months post-death, while in the control group 10 of 19 mothers did, which has a p of less than 0.01 for Fisher’s exact test. No statistically significant difference was found between the experimental group and the control group at 14 months post-death, where 80% of women in both groups had recovered from any psychiatric symptoms. Some social implications that impacted specific women were social isolation as well as marital relationships which lacked intimacy, both of which situations showed a correlation with psychiatric symptoms at six months post-death. Another factor that’s related to a higher incidence of psychiatric symptoms in the control group is the early succession of pregnancy within six months post-death. When comparing the control group and the experimental group, it’s clear that the support and counseling was directly linked to the lessening of psychiatric symptoms based on the answers to provided questionnaires.

In the UK, Turton et al. studied the impact of stillbirth on the psychological aspects of fathers in the subsequent pregnancy and puerperium. They cite how in the UK, approximately 1 in 200 pregnancies end in stillbirth, making this a very common event. This is a community-based study analyzing a cohort of 38 pregnant couples whose previous pregnancies ended in stillbirth, and 38 control couples. Psychological impacts of the fathers occurred at 6 weeks, 6 months, and 1 year postnatal. When compared to the control couples, the fathers of the neonatal bereavement group experienced “significant levels of anxiety and post-traumatic stress disorder antenatally, but all of their symptoms remitted postnatally”, in regard to the death of their first child and the live birth of their second child. The fathers in this study had the same symptoms as the mothers, though to a lesser extent. They also found how the length of time in between the original pregnancy and the live pregnancy was correlated to psychological impacts, with an increased length in time relating to a decreased onset of symptoms in fathers.

Conclusions

Based on the research provided, it is clear that there is a correlation between an increase in anxiety and depression among parents of perinatal and neonatal death. Though various research shows slightly varying statistics, the overall trend shows that mothers are impacted more drastically and for longer periods of time than the fathers are. This may make rational sense, considering in the majority of perinatal death cases the fetus is still inside the mother, the experience of carrying a deceased baby may be extremely unsettling. For fathers however, the emotional connection may not have been made yet, though the anticipation is already there.

In the cases of neonatal death or perinatal death in the first week of life, research shows the fathers are more effected than in the case of perinatal deaths alone. This may be due to the increase in emotional connection to the child, that a father may not experience until the baby is out of the womb. As the research provided explains, the experience within the hospital and immediately after plays major roles on the impact of stress on the parents. Specifically, the lack of choice that the mother has during the labor process, the ability for the parents to see and hold the deceased child, and the availability of mementos (photographs, baby bracelets, etc.) for the parents to take home. It is clear based on the statistics that the hospital methods of immediately removing the deceased infant from the room is not beneficial, and over the past 20 years it seems as if this process is being altered in most hospitals participating in the studies.

Further Research

While there was quite a bit of research regarding the emotional impacts of perinatal death on bereaved parents, there was very minimal research about the cases of miscarriage or abortion. Because these two events both occur relatively early within the pregnancy, and because in many cases abortion is optional, it seems as if researchers have not focused on it. Research is clearly needed regarding the impact of abortion and miscarriage considering it accounts for a very large section of fetal death, and likely causes very dramatic effects on the parents, especially the mother. In regard to an abortion related study, a focus on the parental situation could be very effective. For example, controlling the data for socioeconomic status, presence of an intimate partner or spouse, events of rape or incest, age of the mother, availability of a support system, religiosity of the mother, health of the mother and baby throughout the pregnancy, etc., could be very telling of what situations a woman would be more likely to seek out an abortion in. Another subset of research that is necessary is the social implications of a religious guilt for mothers in very strictly religious families or communities who choose to get an abortion. I would presume that the guilt felt by the mother may be higher than it otherwise would be in situations where their community routinely enforces the idea that abortion is a sin and that the mother may be sent to their version of hell for choosing that option, despite the circumstances of the pregnancy. It would be very interesting to compare this data to data from less religious women in more pro-choice communities, where the social pressure against abortion is likely much lower. I would predict that the presence of this social pressure would cause more anxiety related symptoms before the abortion takes place, and likely more guilt-related or anxiety and depression related symptoms for the time afterward.

Another major gap in the research is the effect of perinatal death and neonatal death in developing nations, where it is statistically known that these events occur at a much more common rate. While women in the developing countries are likely in dramatically different circumstances than women in developed nations, their bereavement and emotional pain should be seen as just as valid as the women in the current studies. Some compounding variables can be predicted, considering it’s known that perinatal and neonatal death increases quite a bit based on the lack of access to medical care, lack of access to nutrition throughout the pregnancy, lack of immunizations in early childhood and a lack of sanitation in the first critical time period after birth. These factors may lead to an increased sense of guilt for the mothers who may see these deaths as being preventable. In contrast, the women in developing nations are more statistically likely to have multiple children, which is known to have a minimizing impact on bereavement and emotional distress post perinatal or neonatal death. A lack of access to birth control. an increased rate of rape and incest, and the increased likelihood of child marriage and young mothers may all play varying roles on the impact of a child’s death, all of which are variables which should be studies by researchers in the field.

One other large factor that was not clear in the research was the impact of perinatal and neonatal death on other surviving family members. For example, the death of a sibling may be very jarring for some children, but if they are too young to comprehend death or even understand that their mother was pregnant it would likely affect them very differently. Research could be completed that controlled for variables such as age of the sibling, the number of siblings, the number of occurrences of perinatal death (women who suffer one miscarriage often suffer multiple), whether or not the parents informed the other children of the death of the sibling, whether the sibling ever knew that the mother was pregnant, etc. I would predict that there are also many impacts of sibling death on anxiety and depression levels of the remaining siblings, specifically for older siblings who were old enough to understand that the mother was pregnant, the difference of impact between the perinatal death and the neonatal death, where the child may be in the household for up to a year before death.