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To review the research literature on the parental experience of pregnancy, primarily maternal, subsequent to perinatal loss.
Computerized searches on CINAHL and PubMed databases.
Articles from indexed journals relevant to the objective were reviewed from January 1997 to December 2007. Only research-based studies in English were included.
The review was performed using the methodology of Whittemore and Knafl (2005). Data were extracted and organized under headings: author/year/setting; purpose; sample; design/instruments; results; and nursing implications for parents during a pregnancy following a perinatal loss.
Depression and anxiety are frequently seen in pregnant women subsequent to a perinatal loss. The parental experience is filled with intense and conflicting emotions as parents balance being hopeful while worrying about another potential loss.
It is important for health care providers to evaluate the woman's obstetric history, acknowledge and validate previous perinatal loss, and discuss with her what would be helpful during the prenatal period with respect to the previous perinatal loss.
Despite great strides in improving perinatal care, perinatal loss (fetal loss and newborn death) continues to occur in the United States. According to the World Health Organization (WHO), the perinatal period extends from the 20th gestational week through one month post birth. However, researchers who study perinatal loss use a broader definition that includes early (during the first 12 weeks following conception) as well as late fetal loss (greater than 20 weeks' gestation). Of all known pregnancies, an estimated 12 - 20% ends in an early fetal loss (Scotchie & Fritz, 2006). In the United States, late fetal loss occurs at a rate of about 6.4 out of every 1,000 live births (National Center for Health Statistics, 2005). The most recent available data reveal that the rates translate to about 1.03 million annual fetal losses (Ventura, Abma, Moshere, & Henshaw, 2004) and, for 2004, 18,602 newborn deaths (Mathews & MacDorman, 2007).
Of the many parents who suffer a perinatal loss, at least 80% become pregnant again, an event that occurs within 18 months (Cuisinier, Janssen, de Graauw, Bakker, & Hoogduin, Côté-Arsenault, 1996). Therefore, it is important for nurses and health care professionals to understand the impact that a perinatal loss has on a subsequent pregnancy. The purpose of this article is to synthesize the research on parental, primarily maternal, responses to pregnancy subsequent to perinatal loss, and to describe nursing implications for parents during the subsequent pregnancy.
Parents go through a period of grief and mourning after a perinatal loss. Parental mourning is an enduring process that is complex and individual; grief can be severe, complicated, and enduring and show many variations in emotional state over an extended period (Cordell & Thomas, 1997). Mourning can lead to feelings of depression and low self-esteem (Janssen, Cuisinier, Hoogduin, & deGraauw, 1996; Swanson, 1999) and the loss of support from family and friends (deMontigny, Beaudet, & Dumas, 1999; Nansel, Doyle, Frederick, & Zhang, 2005). The parental responses to the loss can extend and impact on a subsequent pregnancy. Parents may begin to question their ability to maintain a pregnancy and successfully carry a child during the timeframe following a loss (Nansel, Doyle, Frederick, & Zhang, 2005). Several investigators have recognized the importance of understanding the impact of a prior loss on a subsequent pregnancy and have focused their programs of research in this area (Armstrong, 2002, 2004; Côté-Arsenault, Bidlack, & Humm, 2001; Côté-Arsenault, Donato, & Earl, 2006; Côté-Arsenault & Morrison-Beedy, 2001).
The care and understanding shown during the time of the loss can influence the parents' grieving process (DiMarco, Renker, Medas, Bertosa, & Goranitis, 2002; Gold, 2007; Säflund, Sjögren, & Wredling, 2004; Trulsson & Rådestad, 2004; Uren & Wastell, 2002). Health care professionals need an understanding of the impact of perinatal loss on subsequent pregnancy so that adequate healthcare may be provided.
The methodology developed by Whittemore and Knafl (2005) guided this review. Between the years 1997-2007, the CINAHL and PubMed databases were searched using the following key words: perinatal loss; subsequent pregnancy; pregnancy loss; previous pregnancy loss; perinatal death; fetal death; infant death; and newborn death with subsequent pregnancy. All possible combinations of these terms were also used in the search. In addition, the ancestry method was followed to locate additional research articles. Exclusion criteria included: non-research-based articles, language other than English, books, articles that did not address the parental experience of the subsequent pregnancy, and unpublished studies. Initial searching revealed 252 articles; the citations and abstracts were reviewed. Assistance of a medical librarian was used to confirm the adequate use of search terms and phrases to allow for the best retrieval of information.
Following review of citations and abstracts, the initial sample of 252 was decreased to 40 articles. Review of this sample of 40 yielded 17 articles for study inclusion. The 235 articles were excluded for the following reasons: were not primary research studies, did not focus on the parental experience subsequent to a perinatal loss, and published outside the designated time frame.
To ensure accurate extraction of data from the articles, the first and second authors completed a separate data collection tool for 30% of the sample. The data collection tool contained the following items: authors and year, title of article, study purpose, study design and setting, conceptual framework, sample characteristics, definition of perinatal loss, independent/dependent variables and measurement level, instruments and their reliability and validity, study limitation, parental responses to pregnancy after perinatal loss, and nursing implications. There was a 96% accuracy rate for the data extracted from the articles, demonstrating acceptable inter-rater reliability.
The 17 articles published between 1997 and 2007 were retained for review. Study designs were either quantitative (n = 6) or qualitative (n = 11). All of the studies employed convenience samples ranging from 13 to 206 participants, and the participants ranged from 18 to 47 years of age (Table 1).
Specific parental responses, primarily from women, to a perinatal loss and nursing implications are illustrated in Table 1. Overwhelmingly, the studies included mainly Caucasian, married, middle-class women. The following sections present the various parental responses from quantitative studies and themes from qualitative research extracted from the research-based literature.
Six of the studies specifically included pregnancy anxiety as a variable. Increased pregnancy anxiety was the parental response observed in a majority (64.7%, n = 11) of the studies. The degree of pregnancy anxiety was higher in women with a history of loss, when compared to women without a history of perinatal loss (Armstrong, 2002). Mothers with a history of perinatal loss had increased levels of pregnancy anxiety, while still having similar levels of optimism about the pregnancy compared with those without a history of loss (Côté-Arsenault, 2003). Pregnancy anxiety was more increased in the pregnancy after the loss when the mother assigned more fetal personhood to the loss (Côté-Arsenault & Dombeck, 2001). Also, pregnancy anxiety was increased if the mother felt that she was in control and responsible for the health of the fetus (Franche & Mikail, 1999). Findings in two studies also demonstrated that pregnancy anxiety was higher in the pregnancy after a loss for mothers compared with fathers (Armstrong, 2002; 2004).
For women with histories of early pregnancy loss, subsequent pregnancy anxiety was more increased in early pregnancy versus late pregnancy (Tsartsara & Johnson, 2006). In a recent study, it was demonstrated that anxiety decreased as the pregnancy advanced (Côté-Arsenault, 2007). Findings from this recent study also demonstrated that mothers viewed the pregnancy loss as a threat, that threat appraisal strongly predicted pregnancy anxiety and that threat appraisal was correlated with assigned fetal personhood and gestational age of past loss (Côté-Arsenault, 2007).
Other statements regarding anxiety during a subsequent pregnancy were reported. For example, in one study primiparae were compared with pregnant women who previously experienced a perinatal loss. Primiparae or women pregnant for the first time showed a decreased level of pregnancy anxiety compared to pregnant women who had experienced a previous perinatal loss (Armstrong & Hutti, 1998). Hughes and others (1999) reported that women had an increase in state anxiety during the third trimester, whether there was a history of loss or not. State anxiety refers to the measurement of anxiety at time of testing as opposed to a general tendency to anxiety (trait).
Another parental response to pregnancy that was described was prenatal attachment to the fetus, but the findings are conflicting. Prenatal attachment was decreased in pregnant women who had experienced a prior loss compared to primiparae (Armstrong & Hutti, 1998). In addition, primiparae had higher levels of prenatal attachment than pregnant women who previously experienced a perinatal loss (Armstrong & Hutti, 1998). However, in a later study, Armstrong (2002) found that the level of prenatal attachment was the same in women with and without a history of perinatal loss. Similarly, Tsartsara and Johnson (2006) reported that prenatal attachment occurred in the third trimester regardless of a history of loss or no loss. Increased pregnancy anxiety has also been reported to possibly lead to decreased prenatal attachment (Armstrong, 2004).
Depressive symptoms were found to be present in pregnancy following perinatal loss (Franche & Mikail, 1999), and depressive symptoms were higher during pregnancy in women who had a history of perinatal loss as compared to women who had not experienced a perinatal loss (Armstrong, 2002). In addition, depressive symptoms were higher in women than men in the pregnancy following a perinatal loss (Armstrong, 2002; 2004). Moreover, depressive symptoms were reported to be higher in the third trimester and the symptoms may be greater in women who conceive less than 12 months after a loss (Hughes et al., 1999). However, in contrast, it is interesting that Franche (2001) found in one sample of Caucasian women that a longer time between loss and conception were associated with difficulty coping and despair.
Several methodologies and themes were found across the qualitative studies. All of the qualitative studies were conducted by Côté -Arsenault and colleagues. Methodologies used included a focused or mini ethnography in which data were gathered primarily through selected episodes of participant observation, combined with unstructured and partially structured interviews (Côté -Arsenault & Freije, 2004); focus groups and individual interviews (Côté-Arsenault & Marshall, 2000; Côté-Arsenault & Morrison-Beedy, 2001); descriptive, open-ended responses to a self-completed questionnaire (Côté-Arsenault et al., 2001; Côté-Arsenault & Mahlangu, 1999); and a descriptive design with multiple triangulations using face-to-face and telephone interviews (Côté-Arsenault, Donato, & Earl, 2006).
The themes from these studies reflect the experience of parents as they balance being hopeful while worrying about another potential loss, and illustrate the complex emotions that are experienced by parents. For example, Côté-Arsenault and Marshall (2000) identified the subsequent pregnancy experience for women as “having one foot in the pregnancy and one foot out.” Côté-Arsenault and Morrison-Beedy (2001) found that uncertain outcomes and holding back emotions were themes that emerged from their study. Perinatal loss was portrayed as a life-altering event with feelings of vulnerability, worry, fear, and uncertainty about the outcome of subsequent pregnancies. Emerged themes included dealing with uncertainty; daily worries about health of baby; waiting to lose the baby; holding back emotions; acknowledging that the loss happened and can happen again; and changing self, in that losing a baby was an experience that changed their behaviors and sense of self.
Similar themes were found in another study, such as losing another baby, concerns about the overall health of the baby, emotional stability of self, the impact of another loss on her future, lack of support from others, fear of bad news, and worries never end (Côté-Arsenault et al., 2001). Common discomforts and events over time included: fluctuating worry; growing confident; interpreting signs; managing pregnancy; and having dreams (Côté-Arsenault et al., 2006). Other responses included: seeking reassurance; being hyper vigilant; and relying on internal beliefs (Côté-Arsenault et al., 2006).
Some commonalities emerged upon examining the themes. The theme of worry was seen in four studies (Côté-Arsenault et al., 2001; Côté-Arsenault et al., 2006; Côté-Arsenault & Freije, 2004; Côté-Arsenault & Morrison-Beedy, 2001). The theme of having a healthy baby was reported in two studies (Côté-Arsenault et al., 2001; Côté-Arsenault & Morrison-Beedy, 2001). Finally, recognition of a changed reality was the last theme that was identified more than once (Côté-Arsenault & Mahlangu, 1998; Côté-Arsenault & Marshall, 2000; Côté-Arsenault & Morrison-Beedy, 2001). A changed reality meant that the perinatal loss had changed the woman's perspective on pregnancy, and she was in a precarious position.
In a quantitative study, Turton and colleagues (2001) showed that there was an increased risk for the mother to experience post traumatic stress disorder in the pregnancy following a stillbirth. In addition, there was an increase in the presence of post-traumatic stress disorder when there was a short timeframe between the loss and the current pregnancy. The dearth of studies in this area indicate that additional studies are needed before conclusions can be drawn.
Investigators recommended a thorough evaluation of the obstetric history which will allow nurses as well as other health care providers to provide the necessary care (Armstrong, 2002; Armstrong & Hutti, 1998; Côté-Arsenault et al., 2001; Côté-Arsenault & Dombeck, 2001). Evaluation of the obstetric history is critical because it alerts nurses to expect and recognize anxiety when the pregnancy is subsequent to a loss (Côté-Arsenault, 2007; Côté-Arsenault & Dombeck, 2001; Côté-Arsenault & Freije, 2004). Referral to appropriate services is also critical and can only be done if this history is first obtained (Armstrong, 2002; Côté-Arsenault et al., 2001; Turton et al., 2001). Evaluation of the parental support system is another essential aspect (Armstrong & Hutti, 1998). An appropriate evaluation will allow health care providers to work with the parents to promote choice in procedures that may be performed in the subsequent pregnancy (Armstrong, 2004; Côté-Arsenault et al., 2001; Côté-Arsenault & Marshall, 2000). One way to promote parental choice would be to ask the parents what would be beneficial to them throughout the pregnancy (Côté-Arsenault et al., 2001; Côté-Arsenault & Marshall, 2000).
Another nursing implication recommended by the investigators is that of acknowledgement and understanding by the health care workers. Validating and acknowledging the loss is significant to these women (Armstrong, 2002; Côté-Arsenault & Dombeck, 2001; Côté-Arsenault & Freije, 2004; Côté-Arsenault & Marshall, 2000; Côté-Arsenault & Morrison-Beedy, 2001). Women who have experienced a perinatal loss desire the health care team to understand the emotions that they are experiencing (Armstrong, 2004; Côté-Arsenault & Dombeck, 2001) and to not make light of their concerns during the subsequent pregnancy (Côté-Arsenault & Morrison-Beedy, 2001). Appropriate counseling for the woman concerning her increased concerns is needed (Armstrong & Hutti, 1998), and referral to a mental health professional, preferably one familiar with perinatal mood disorders, is warranted. if the woman appears to be highly self-critical (Franche, 2001).
Encouraging the women to talk and voice their concerns is another vital practice implication described in the research. This approach can be achieved by asking and allowing the women to have discussions about their emotions and feelings during the pregnancy (Armstrong, 2002; Armstrong, 2004; Côté-Arsenault et al., 2001; Côté-Arsenault & Dombeck, 2001). Talking about the loss is essential for these women and should be encouraged (Côté-Arsenault & Marshall, 2000).
More frequent contact with the health care team via increased numbers of visits or phone calls can be advantageous (Côté-Arsenault, 2003; Côté-Arsenault et al., 2006; Côté-Arsenault & Morrison-Beedy, 2001). Support groups or networks can be useful to women after perinatal loss. Referral to these resources should be made (Armstrong & Hutti, 1998; Côté-Arsenault, 2003; Côté-Arsenault et al., 2001; Côté-Arsenault & Freije, 2004).). If support groups are not available or attendance not feasible, the health-care provider can refer to one of the following websites, which offer resources for both those experiencing a loss and for health professionals: (http://www.obgyn.net/women/women.asp?page=/women/loss/loss; http://www.marchofdimes.com/pnhec/572_4150.asp; http://www.plida.org/; http://www.nationalshareoffice.com/; http://www.bereavementprograms.com/; http://www.missfoundation.org; www.compassionatefriends.org).
Other nursing implications include helping the woman to decrease the amount of control that she may feel responsible for during the pregnancy (Franche & Mikail, 1999). Providing education regarding pregnancy signs and symptoms is also a vital aspect that must not be forgotten (Côté-Arsenault et al., 2006; Côté-Arsenault & Mahlangu, 1999).
In summary, using the nursing implications previously discussed to decrease anxiety during pregnancy subsequent to loss is critical (Armstrong & Hutti, 1998; Côté-Arsenault, 2007; Franche & Mikail, 1999; Tsartsara & Johnson, 2006).
The research demonstrates that a pregnancy after a perinatal loss is a time full of intense emotions for expectant mothers, and according to the limited research, fathers. Clearly, the responses to pregnancy after perinatal loss are constant among Caucasian, married, middle-class women and can be generalized to this particular population. Anxiety and depression for expectant mothers and, to a lesser degree, fathers, are common parental responses cited consistently. This finding is not surprising considering these responses usually occur at the time of the loss and may continue into future pregnancies (Janssen, Cuisinier, Hoogduin, & deGraauw, 1996; Swanson, 1999; Van & Meleis, 2003). Furthermore, these responses can be viewed as a natural response to worrying that this pregnancy will also end in a loss. This is especially prevalent when the reason for the prior loss cannot be fully explained or avoided. The research conducted by Côté-Arsenault and co-workers, as referenced in this article, has offered a better understanding of the complexity of emotions experienced during the pregnancy, which extend beyond anxiety; her recent research offers a beginning understanding of the patterns of emotions and coping strategies.
The research contains some conflicting evidence regarding parental-fetal attachment in the subsequent pregnancy, leaving it yet unclear whether or not attachment is decreased. However, there is evidence to suggest that some mothers seem to show decreased attachment in subsequent pregnancies. These behaviors could serve as a protective and even practical approach women use to deal with the uncertainty of the outcome of their pregnancy What is unknown and perhaps more significant is to determine the effect of these behaviors on paternal attachment in the newborn period and beyond, especially because earlier and limited research in this area has shown problems with attachment (Heller & Zeanah, 1999) and disrupted parenting (Forrest, Standish, & Baum, 1982; Hunfeld et al., 1997; Phipps, 1985-86) for infants born after a subsequent pregnancy. Investigators in this review have noted the importance of future research in this area. It is interesting that in a recent review of maternal-fetal attachment research, Cannella (2005) concluded that there was insufficient evidence to demonstrate a link between maternal-fetal attachment and pregnancy risk variables (medical problems during pregnancy). Furthermore, the research supports that maternal-fetal attachment increases over time. This finding has implications for controlling the timing of the data collection when attachment is measured. Moreover, the response to pregnancy loss, like maternal-fetal attachment, is a complex phenomenon that may not lend itself to traditional methods of measurement.
Research should assist practitioners in improving patient care outcomes. Our intent is for this review to serve as a useful way for nurses to incorporate research into their clinical work. The review demonstrated four main practice implications which include: evaluation of obstetric history, acknowledging the loss, encouraging mothers to discuss their concerns, and educating mothers about pregnancy loss. Perhaps the most critical aspect of caring for parents who have had a prior pregnancy loss is to remember that each mother and each partner is different. This means that the nurse should evaluate the needs of each parent individually.
Even though care should be individualized, there are some general practice implications. Evaluation is a critical, but often overlooked aspect of the clinical encounter. Thoroughly exploring a mothers' obstetric history in terms of prior losses, and learning about their personal choices regarding prenatal care can both help facilitate the medical encounter by alerting heath-care professionals to potential complications and gives practitioners an entrée into how the mother is coping with her current pregnancy and past loss. This approach requires health care professionals to communicate with the mother by acknowledging and validating her previous losses. Women particularly appreciate when health-care providers acknowledge the loss through and open and honest discussion; therefore, it is important to ask mothers about their previous losses. It is imperative that mothers be given the opportunity to contact the health-care team as often as she needs to. For some it may be additionally supportive to discuss their concerns in a support group setting. Unfortunately, there remains a paucity of research being conducted with fathers who also experience a pregnancy loss. There is even less literature reviewing their needs in terms of subsequent loss. However, there is some evidence to suggest that fathers may also benefit from these interventions.
The most limiting factors of this integrated literature review is the small number of studies that met inclusion criteria and the homogenous sample of predominantly women. The sample homogeneity limits the generalizability of the responses and implications beyond married, middle-class Caucasians. The way that investigators defined ‘perinatal loss’ and outlined inclusion criteria was also inconsistent and therefore a limitation. Specifically, a majority of investigators defined perinatal loss to be any loss during the course of an entire pregnancy, as well as neonatal losses occurring in the first 28 days of life. However, their inclusion criteria for subject recruitment often varied from this definition. Other limitations include that some investigators did not include first trimester loss, while others excluded neonatal losses. Researchers have not yet studied whether parental responses during a pregnancy subsequent to a pregnancy loss prior to 12 weeks gestation are different from a loss after 24 weeks gestation, or a stillbirth.
Based upon the literature included in this paper, nursing has little to no knowledge about women's responses to pregnancy following a perinatal loss in nearly anyone other than Caucasian, married, middle-class women. Future research should consider including subjects who have been underrepresented in research, such as women of color, who also have a disproportionate incidence of perinatal loss; women without supportive partners; adolescents; women who have gone through unsuccessful infertility treatments; working class/impoverished women; and women with unintended or unwanted pregnancies; as well as men in their study. Recruitment at clinics that serve underrepresented ‘clientele, as compared to recruitment via support groups, may be successful in recruiting a diverse background. Furthermore, future research should include all types of perinatal loss. Some studies may be limited to a specific trimester, the neonatal period, or to elective losses. Overall, further research is needed to validate the responses and implications currently reported in the research on pregnancy subsequent to perinatal loss.
Perinatal loss can have devastating effects on the mental health and anxiety of the woman, and possibly the partner. This knowledge is essential to consider not only at the time that the loss occurs, but also throughout any future pregnancies. A narrow segment of the population has been studied regarding women's responses to pregnancy after perinatal loss. Clearly, this lack of knowledge and how best nursing can meet the needs of women necessitates further inquiry. The parental responses and implications identified are important for the health care team to consider, as they strive to provide the most supportive care.
Supported in part by the Center for Reducing Risks in Vulnerable Populations, Grant # P30 NR09014, NINR/NIH and the Center for End-of-Life Transition Research, Grant # P30 NR010680, NINR/NIH.
Callout 1: Of the many parents who suffer a perinatal loss, at least 80% will experience a subsequent pregnancy.
Callout 2: Anxiety and depression are common maternal responses during pregnancy following a perinatal loss.
Callout 3: Nurses should evaluate the obstetric history, acknowledge and validate previous perinatal loss, encourage women to talk, and personalize care.
Pamela D. Hill, Maternal Child Nursing, College of Nursing, University of Illinois, Chicago.
Katrina DeBackere, Illini Hospital, Silvis, IL.
Karen L. Kavanaugh, Maternal Child Nursing, College of Nursing, University of Illinois, Chicago.