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Health Soc Work. 2016 August; 41(3): 147–154.
Published online 2016 March 1. doi:  10.1093/hsw/hlw007
PMCID: PMC4985877

Meaning Reconstruction among Women following Stillbirth: A Loss Fraught with Ambiguity and Doubt

Abstract

Stillbirth (SB), death of a fetus in late stages of pregnancy or during birth, usually leads to extended and intense grief among women. However, their grief is often disenfranchised and they are denied the social right to mourn their loss. Constructivist theories recently assuming a central place in bereavement studies inform this article, which aims to identify the meaning that women who experience SB ascribe to their loss in general and to the lost figure. This tack may offer the opportunity to examine the consequences of the discrepancy between personal and environmental constructions of this loss on its personal construction and to learn about the essence of the loss. Within the domain of qualitative research, the current article draws on phenomenology and the research method that has emerged from this approach. Specifically, the article focuses on in-depth interviews with 10 women who experienced SB. Its findings suggest that for these women, the lost figure and the loss in general engender ambiguity both internally—that is, within the psyche of women themselves—and externally, within the women’s social environment. Thus, ambiguity, uncertainty, and doubt infused women’s experience of SB. Implications for theory and practice are discussed.

Keywords: ambiguous loss theory, disenfranchised grief, meaning reconstruction, stillbirth

A stillbirth (SB) is defined as death of a fetus after the 20th week of pregnancy. Causes of SB include preeclampsia, pregnancy diabetes, fetal abnormalities, and others. In a third of cases, the cause is unknown (Medical Dictionary, 2014). SB occurs in approximately 5.5 out of every 1,000 births in Israel (Central Bureau of Statistics, 2014)—an incidence similar to that of other advanced countries such as the United States (U.S. Census Bureau, 2014) and the United Kingdom (Office for National Statistics, 2014). For many women, intense and enduring grief accompanies this traumatic event (Willick, 2006). In some cases, SB produces extensive adverse effects on women’s mental health, their family life, and their capacity to work (Downe, Schmidt, Kingdon, & Heazell, 2013). The present study seeks to examine the meaning that women who experience SB ascribe to their loss in general and to the lost figure in particular.

Literature Review

Constructivist theories, which provide a strong analytical framework for the study of loss and bereavement, inform this article. These theories contend that the individual constructs meaning in relation to events engulfing him or her; when loss occurs, meaning reconstruction, an essential psychosocial process, commences (Neimeyer, 2001). Meaning reconstruction occurs at the junction between the self and the outer world. Thus, meaning is constructed in relation to the sociocultural context from which an individual draws and to which he or she returns for validation (Neimeyer, Prigerson, & Davies, 2002).

In terms of the social context, loss and bereavement studies refer to the anguish felt by women following SB as disenfranchised grief (Kelley & Trinidad, 2012)—that is, one in which individuals experience a sense of loss but others delegitimize their feelings and deny their social right to mourn (Doka, 1989). In terms of the cultural context, in Israel two unique factors affect the experience of SB as it occurs in the Jewish population: (1) the position Judaism takes in relation to SB, and (2) the meaning of motherhood in Israel.

First, following the guidelines of the religious Orthodox establishment, Jewish Israelis bury stillborns in mass graves; parents are neither present nor notified as to the burial site (Gazit, 2007). Furthermore, Halachic Judaic law stipulates that in the event of SB, mourning customs should not be performed (Otzar Hahochma, 1523). In these respects, Israeli religious authorities reinforce the social lack of recognition of SB and its attendant mourning. For Jews in Israel, death-related matters—burial and mourning practices—are managed by the religious Orthodox establishment, so this message affects the secular population, as well.

Second, widespread ideological beliefs promoting childbirth among the Jewish population in Israel make motherhood a virtually unquestioned national imperative (Remennick, 2000). In these circumstances, SB in Israel can be interpreted not only as a personal loss, but also as a failure to fulfill an essential social objective.

Present Study

The process of meaning reconstruction following SB has attracted limited research to date. Studies concerning women who have experienced SB—albeit not necessarily with a focus on the process of meaning reconstruction—have found that they do undergo this process. (Bakker & Paris, 2013; Gilbert & Smart, 1992; Willick, 2006). In 1983, for example, Lovell argued that for women who experience SB, the environment’s denial of the identity of the lost figure as a baby and the women’s identities as mothers can induce women to make those rejections, themselves. In 2006, Willick reiterated that this rejection does indeed occur in some women, at least temporarily, and referred to their difficulty in constructing a personal meaning for their loss. Apart from these few studies, however, the literature does not appear to offer a more in-depth understanding about the consequences of discrepancy between personal and environmental constructions of this loss on its personal construction. In Israel, the religious and social context sharpens and amplifies this discrepancy, thus providing a particularly clear window into loss delegitimization, disenfranchised grief, and meaning reconstruction. By exploring SB in Israel, this article aims to address these unexamined issues and promote a deeper understanding of these phenomena.

Beyond that aim, and with regard to it, the aim of this study was to examine the meaning itself that women who experienced SB attribute to their loss and to the lost figure. This examination may allow us to understand the essence of the loss for the women—that is, its fundamental and distinctive meaning (Giorgi, 1985). This, in turn, will make it possible to formulate guidelines for the professional community that helps women to deal with this loss.

Method

Studying meaning calls for a qualitative research approach (Denzin & Lincoln, 2005). Within this domain, the current research drew on phenomenology—a descriptive approach that aims to reveal the essences of phenomena in people’s lives (Giorgi, 1985).

Participants

Data collection for this study, undertaken entirely in Israel, focused on 10 women who have experienced SB after the 23rd week of pregnancy—the limit of viability (Sheach Leith, 2009). All women experienced a noninitiated loss. The causes of death varied: a blocked umbilical cord, clotting problems, or detached placenta. In two cases, the cause of death was unknown. For half of the women, the loss occurred during their first pregnancy; for the others it happened between their second and fourth pregnancy. Their age at the time of the SB ranged from late 20s to mid-30s—hence, none had been at either extreme of reproductive age. All women were secular and Jewish, except one who had grown up as secular but became religious before the SB. Every participant attained a high school diploma or an academic degree; they were employed in various occupational fields: social work, marketing, medicine, pedagogy, design, industry, and law. The interviews took place between one to nine years after the loss. At that time, all of the women were still married to the same partners they had during the SB, and all but one had living children.

Process

Many women who experience SB refrain from discourse about their loss due to its lack of social recognition (Willick, 2006). Thus, they are a complicated population to access. This difficulty led to recruitment through snowball sampling. As customary in phenomenological studies, in-depth interviews were conducted with the women. Interviews were conducted at a place and time of the participants’ preference, and most were held at their home; two were held at their workplace. Most interviews lasted for approximately three hours, with a range between an hour and a quarter and four hours. Interviews were conducted in Hebrew. Each interview was recorded and transcribed. Before the interviews were conducted, women were asked for their informed consent. To avoid the risk of leading the women, each interview began with a general question: “Can you relate what the experience of losing an advanced pregnancy meant for you?”

Data Analysis

Analysis of the transcribed interviews followed the method formulated by Giorgi (1985). The analysis involved decomposing the text to the units that constitute it and later recomposing them to create a new whole revealing the characteristics of the SB phenomenon. The analysis was implemented in two stages—within-case and cross-case. First, a within-case analysis, comprising four stages, was conducted of each interview. The four stages are (1) gain a sense of the whole, (2) identify meaning units, (3) categorize units to themes, and (4) synthesis. In the synthesis stage, the insights contained in the meaning units derived from each woman’s interview were integrated to create a consistent description of her experience of SB: the phenomenological description of her loss. Thus, this analysis produced 10 unique stories, each of which revealed the different meanings of SB for the various women. These stories were then sent to each woman for validation. Second, a cross-case analysis was carried out by synthesizing the various meanings that had emerged. Combining the within-case and cross-case analyses made it possible to preserve the uniqueness of the meaning that each woman constructed for her loss, and to raise the level of analysis and achieve an integrated understanding of the meaning of the loss and its essence.

Phenomenological inquiry requires bracketing: a process in which the researcher sets aside, as far as possible, prior knowledge, theoretical assumptions, and conceived notions about the phenomenon under investigation. This process allows a fresh perspective of the studied phenomena (Moustakas, 1994). Accordingly, throughout the research we applied a critical detachment from theories of loss and bereavement and from prior knowledge regarding the experience of SB. This detachment facilitated a naive approach to the women’s stories. Bracketing, monitored through peer debriefing and member checks, served as a tool for increasing the trustworthiness of the present research.

Findings

Sheach Leith (2009) argued that to create meaning for a reproductive loss, one must first understand who has been lost—and indeed, this article addresses women’s perception of the lost figure. This perception was a central theme in their accounts, interwoven in their stories throughout the interviews. For them, the identity of the lost figure was unclear, and consequently, the loss in general was ambiguous and fraught with questions.

Perception of the Lost Figure by Women Experiencing SB

Women who experienced SB attribute various meanings to the lost figure. Three different patterns of relating to it were identified; these patterns were obscure and not clear-cut. First, half of the interviewees consistently referred to the lost figure as a child. This was apparent in their exclusive use of the term “baby” or “child” when relating to it: “It’s just a child that I didn’t get to know,” “We have a dead girl,” “I love her as one does for something longed for . . . another child of mine that I just want terribly to hug.” For them, the lost figure was another real child, but simultaneously a child that can only be yearned for.

Second, four interviewees referred to the lost figure alternately as a “child” and as a “fetus.” For example, when one participant described the results of the autopsy, she said, “The parameters of the fetus—in terms of his size and measurements—were all fine”; yet when describing her return home, she said, “It was very hard to come back home without a baby.” Hence, at different stages of her story, her attitude toward the lost figure changed. Whenever such changes occurred in interviewees’ language when referring to the stillborn, they were asked a direct question about it—to which half responded with a clear answer, with one referring to a baby and the other to a fetus. Among the other two, the question was met with further doubts: “It’s a little bit confusing . . . he’s something in the middle, perhaps.”

Finally, one interviewee exhibited a different pattern of relating to the lost figure, referring to it neither as a fetus nor as a baby, but in more spiritual terms. For her, the lost figure was perceived as a vague and obscure figure, yet assuming a significant role: “She’s some kind of entity that exists within me—like, I don’t know, perhaps some kind of guide . . . some sort of character that carries great significance for me” (emphasis added). Clearly, then, among women who experienced SB, the lost figure is attributed various meanings.

Examination of the interviewees’ perception of the lost figure and of their loss, in an effort to understand the essence of SB, revealed that it is an obscure loss, a loss referred to as an ambiguous loss (Boss, 2007). Hence, among the seven interviewees who apparently exhibited a clear perception of the lost figure—either initially, or after being asked about it directly—inner questions they harbored about the identity of this figure rose to the surface as well. Thus, although previously we referred to a situation in which interviewees ascribed it a specific identity, further careful examination of their verbiage revealed a sense of ambiguity. This ambiguity occurred on two axes: (1) internal (within the women themselves), and (2) external (being nourished by their outer world). The two axes will be addressed separately in this article.

Essence of SB: Prolonged Internal Ambiguity

Women who have experienced SB find that they are beset by questions and ambiguity deep within themselves—about the meaning of the lost figure and, by extension, about their loss in general. Thus, inquiry into accounts of interviewees who seemingly had a clear perception of the lost figure (whether as a fetus or a baby) revealed uncertainty about this perception, existing on a deeper and more concealed level. Among those who unequivocally perceived the stillborn as a child, this uncertainty was evident in two ways. First, this perception was thought of as one that might change with time. Thus, one participant, who asserted, “I feel like I have two children—one of them not alive,” followed this with doubt:

Everything is still so fresh with the new pregnancy, so . . . they’re both still pretty much at the same stage for me. . . . [But] maybe, when I’ll have a big child, I’ll say, “Well, this one’s a child, and what you had was not a child at all—it was a pregnancy.”

Second, reluctance from the unequivocal perception of the lost figure as a child was apparent in the related context of the perceived maternal self-identity—that is, in their inability to give a clear answer to the question of whether someone who has experienced SB is indeed a “mother”:

I feel like a mother in the abstract sense of the matter . . . : the child grew inside me for nine months, which means it was something—it wasn’t meaningless—but it’s not the same, it’s not the same thing as having a child.

The one interviewee who unequivocally referred to the stillborn as a fetus, after being asked about this issue, also displayed inner uncertainty and doubt about this view. Her account did not appear to match her inner feelings, as those arose when she experienced a death of a child in her community: “I identified with the loss of the child . . . with the loss of their child and the loss of my child. Suddenly, I said, ‘This loss has happened to me, too.’”

In summary, among interviewees for whom on an external level there appeared to be clarity about the identity of the lost figure, whether as a child or as a fetus, an internal uncertainty about this perception also existed. It could be said that the self created a meaning for the loss but then cast doubt about it, in a continuous circular process.

Essence of SB: An External Invalidation That Nourishes and Intensifies the Internal Ambiguity

Women’s attempts to formulate a meaning for their loss occurred in the context of an environment (medical–professional and social–familial) that itself had not yet succeeded in doing so—or that had cast doubt on any significant meaning pertaining to the loss. With regard to the medical–professional environment, interviewees spoke of lack of sufficient support and guidance about coping with the loss and its attendant issues, such as viewing the stillborn and performing an independent burial. It appeared that among the professional staff there may have also been uncertainty as to the meaning of the loss, judging by the varied responses and guidance the women received. Hence, with regard to the question of whether it was adequate to view the stillborn (thus reinforcing his or her existence and creating a picture to which one can later connect), the women cited a range of responses, with some staff members recommending a viewing and others recommending none. With regard to the question of whether it was adequate to perform an independent burial for the stillborn (thus creating means for a future relationship with him or her), some women were offered this option, whereas others were given no guidance. Lack of sufficient guidance from the staff and exposure to different ways of dealing with the loss, after the fact, perhaps nourished the existing internal ambiguity that women who experienced SB felt regarding their loss.

As for women’s social–familial environment, messages they received that belittled or invalidated the loss led them, at times, to question the meaning they had attributed to their loss, and heightened their internal uncertainty regarding it. These messages touched on three related issues: (1) the perception of the lost figure, (2) the perception of the loss in general, and (3) notions of the appropriate reaction to the loss. First, interviewees related to a dismissive attitude toward the lost figure, a denial of the their bond with it, and a perception of it as being replaceable, as one interviewee cited a neighbor’s response: “This is not a baby that you actually got to know, so never mind—you’ll make another one.” This situation of disenfranchisement is known as one in which “the loss is not recognized” (Doka, 1999).

Second, interviewees related to their environment’s dismissal of the loss in general, as another interviewee said: “For our family it was something . . . that had never happened . . . —there is no place for it.” Finally, this deprecation of the lost figure and of the loss itself resulted in a reduction of the perceived appropriate reaction to the loss, a situation in which “the way an individual grieves is not validated” (Doka, 1999, p. 38). Thus, interviewees spoke about an expectation for a short-lived reaction to the loss: “After two weeks, after a month, you know that people already want you to move on . . . to get back to your life.” These minimizing or dismissing reactions led women, at times, to question their own perception of the loss. Thus, it heightened the ambiguity within them:

When I was in treatment, I moved between the terms “babies” and “fetuses,” and the therapist told me, “Why ‘babies’? They’re fetuses! . . . ” I kind of understood, but then I kind of didn’t . . . sometimes they are fetuses [for me], and sometimes babies.

At the extreme, these reactions led the women to adopt their environments’ definition of their loss—as one woman phrased it, “I ended up minimizing it, as society did—I really began to minimize its intensity, to the point where I myself began to call it a miscarriage.”

In summary, SB is an ambiguous event, both internally and externally. Internally—even when women did have an answer to the question of the meaning of the lost figure and of the loss itself, it was accompanied by misgivings and doubts. Their internal ambiguity grew in the face of their surroundings’ response, which minimized the significance of their loss.

Discussion

The literature identifies the grief following SB as disenfranchised grief (Kelley & Trinidad, 2012). From a constructivist perspective, this means that women’s attempt to construct meaning of their loss takes place within the context of an environment that underestimates its meaning. The need for external validation complicates women’s internal dialogue and exacerbates their existing uncertainties about the lost figure and about the loss itself. Thus, this study shows that for women who experience SB the lost figure and the loss in general are ambiguous. As a consequence, so, too, is their maternal personal identity.

This finding is not consistent with findings of previous studies, according to which women who experience SB perceive the stillborns as babies (Gilbert & Smart, 1992) and that, in addition, they perceive themselves as mothers of the stillborns (Willick, 2006). The differences between those findings and the findings of the present study may be due to the way in which the loss was defined during data collection. In their interview guide, Gilbert and Smart (1992) referred to the stillborn as “a child.” Similarly, Willick (2006) referred to the stillborn as “a baby” and to herself as “a bereaved mother” following this loss. It is possible that this terminology, which projected a certain meaning onto the lost figure and onto the women who experienced this loss, served as a guide for the interviewees in those studies. In the present study there was a deliberate attempt to avoid applying any defining labels during the interview, and perhaps because of this, the ambiguity surrounding the lost figure and the attendant self-perception was revealed.

The uncertainty that women who have experienced SB feel at an internal level toward the lost figure and the loss itself point to literature in the field of self-disenfranchising grief. This term, coined by Kauffman (1989), refers to situations in which lack of recognition of grief is transposed from the social context to the context of the inner self—that is, when grief is either left unrecognized or obscured by the individual. The psychological mechanism underpinning this phenomenon is shame. Kauffman’s insight into the internal dimension of disenfranchised grief seems to correspond with the situation of SB—yet one key aspect of it is inconsistent with the accounts of the interviewees of this study. Whereas Kauffman (1989) referred to a lack of recognition of grief, for the interviewees the question was more fundamental, projecting on the grief—namely, how is the meaning of the lost figure interpreted and experienced? This question was likely to receive varying responses from the same woman. In other words, the issue was not a lack of recognition of grief, but an elusive and alternating recognition of the identity of the lost figure. Thus, in the case of SB the underlying mechanism of the self-disenfranchised grief is not necessarily shame alone, and may also be uncertainty as to the meaning of the dead, and, by extension, of the loss in general. This finding may suggest that the concept of self-disenfranchising grief can be extended to include this condition.

The ambiguity of the lost figure and of the loss in general direct to the ambiguous loss theory, referring to situations in which individuals face something different from an ordinary, clear-cut loss. Rather, ambiguous loss is characterized by relentless uncertainty (Boss, 1999) and obscurity (Boss, 2007). This depiction appears to well suit the experience of SB as reported by this study’s participants. Yet, whereas Boss (2007) emphasized that the ambiguity is an internal consequence of the ambiguity projected by an external source such as their surroundings, in the case of SB it is not clear whether this is indeed so or whether the internal ambiguity awakens within the women and is reinforced by the surroundings. Thus, the question regarding the source of the internal ambiguity in the case of SB is a complex one, and its answer remains unclear. Nonetheless, much of the ambiguous loss theory is relevant to the SB phenomenon.

Boss (1999) pointed out that an ambiguous loss is confusing to those who experience it, without them knowing how to accord meaning to it. This is reflected in questions that arise within them as to their own and family identity. Their attempt to find a way to cope with the loss and to clarify the meaning of what has been lost leaves them experiencing the loss on their own, without validation from their surroundings (Boss, 1999). Thus, for them there exists a psychological family, and its perceived construction may not concur with their physical or legal family frame (Boss, 2007). These observations are fully consistent with the accounts provided by the interviewees in our study. Indeed, Boss (1999) explicitly cited SB as an example of ambiguous loss.

The present article is not the first to note an association between SB and the issue of ambiguity. However, the ambiguity of this loss, as has been revealed in the present study, has not been recognized in prior literature. Thus, Kelley and Trinidad (2012) related to the ambiguity of the loss in the context of interpersonal variations in definitions of the identity of the lost figure and the attendant grief but not to the internal dimension of this ambiguity. Cacciatore, DeFrain, and Jones (2008) noted that ambiguity—in the sense of physical absence coupled with psychological presence—is a central theme of this loss. However, using this definition all losses might be characterized by ambiguity, because they might include physical loss combined with continuous psychological presence through the transformation of the bond between the grieving person and the dead, which allows a continuous bond (Klass, Silverman, & Nickman, 1996). Also, they referred to the fact that the loss raises questions within women regarding themselves, regarding their partners, and regarding their faith, some of which remain beset by ambiguity.

Conversely, in the studies by Rycroft and Perlesz (2001) and Betz and Thorngren (2006), the point at which ambiguous loss and SB met was in relation to the lack of social recognition of the loss. Betz and Thorngren pointed out that this situation may lead the mourner to avoid defining the loss—a description that accords with the experience described by the women in this study yet fails to fully fathom the phenomenon. Thus, the ambiguity of SB is due not only to its being invisible to the environment, but also to its being vaguely perceived by the women who experience it. Finally, Lang et al. (2011) addressed the ambiguity of the loss and the inner questions it arouses in couples who experienced it, such as: What is it that we have lost—was it a baby or a specimen? A boy or a girl? Yet these authors studied perinatal loss in general, and their study population mainly comprised couples for whom the loss had occurred during earlier stages of pregnancy—that is, before the 20th week of pregnancy. In our view the questions that they pointed to relate to the objective identity of the stillborn rather than his or her meaning. Hence, an internal sense of ambiguity, as reported in the present study, has not been recognized by prior authors. In this regard, the theory of ambiguous loss might be extended to include a component of inner ambiguity.

This article enriches knowledge regarding meaning reconstruction in situations involving gaps between personal and outer constructions. Its findings indicate that this gap can undermine the personal perception, cast doubt on it, and make it vague and fraught with uncertainty. Within the specific field of loss and bereavement, this finding is relevant to meaning reconstruction in situations of disenfranchised grief and represents a new contribution to the field.

Limitations

This article provides insight into the process of meaning reconstruction following SB and its outcomes, yet it has limitations. With regard to the study population, understanding the crucial role of the environment in the process of meaning reconstruction indicates that to gain a broader picture of the loss an expanded population should have been addressed, including the medical personnel treating the women, the religious officials, family, and friends.

Another limitation concerns the characteristics of the participants, who constituted a fairly homogeneous group in terms of age (between late-twenties and mid-thirties), marital status (married to the same partners as at the time of loss), and religious affiliation (all were secular and Jewish, except one who had turned religious before the SB). These three factors may have affected the meaning reconstruction of the loss, inasmuch as SB in this age range may be experienced differently than one later in life, toward the end of one’s reproductive years. Damage to a couple’s relationship in the wake of the loss may also bring about a different meaning reconstruction. Finally, the literature suggests that religious affiliation can affect the perception of this loss (Bakker & Paris, 2013). Future studies should approach a more heterogeneous population and encompass professionals and family members, as well.

Implications for Practice

The findings of this study enable establishing guidelines for the professional community dealing with the loss, both as it occurs and later on in the grieving process. As previously noted, to create meaning for childbirth-related losses, one must first understand who it is that has been lost (Sheach Leith, 2009). However, for the interviewees of our study the lost figure was ambiguous. As a result, it seems, so too was the loss in general. Accordingly, treatment for these women must touch on this point—from the very moment of discovery. Judging by the interviewees’ accounts, it is important that women be informed of the loss in a direct and respectful manner, while avoiding language that minimizes the loss and might complicate their attempt to forge a personal meaning for it. Furthermore, they should be presented with the full range of practical options on matters such as viewing the stillborn and performing burial. These options and their respective meanings should be explained, while allowing women to select their preferred option. In addition, the findings of this study indicate that women’s coping with the loss is a long-term process. Accordingly, they should continue to be monitored after discharge from hospital (which is not the case today) and presented with a range of possible treatment options. During treatment itself—to the extent that it is appropriate—issues such as the meaning reconstruction of the lost figure, the loss in general, and the question of self-identity should be discussed.

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