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Short Essay On Coping With Loss Of Baby

Each year, over 50,000 U.S. children die (U.S. National Center for Health Statistics, 2000). The death of a child is one of the most painful events that an adult can experience and is linked to complicated/traumatic grief reactions (Prigerson et al., 1999). For parents, the dissolution of the attachment relationship with the child elicits severe anxiety and other negative emotions associated with loss (Bowlby, 1980). Parents might also experience guilt about having been unable to protect the child (Gilbert, 1997). Furthermore, because the death of a child defies the expected order of life events, many parents experience the event as a challenge to basic existential assumptions (Wheeler, 2001).

In light of the significance of child death as a traumatic experience for parents, research on parental bereavement is more limited than might be expected. Most studies have been clinical descriptions of participants in grief support groups (e.g., Compassionate Friends), so the findings likely have been influenced both by the self-selection factors that led individuals to seek this type of help and by the participants’ experiences in the support groups. As a result, the findings cannot be generalized to the broader population of bereaved parents. Furthermore, drawing from traditional models of grief resolution that emphasize relatively short-term adaptations, researchers have usually assessed functioning for only a brief period during the acute phase of bereavement. Few studies have examined longer term outcomes, and most that have done so have used retrospective reports, which are subject to distortion when individuals recall their functioning many years earlier (e.g., Nelson & Frantz, 1996; Stehbens & Lascari, 1974).

The purpose of the present study was to examine the life course impacts of parental bereavement in an unselected sample of adults who were studied prospectively from early adulthood, prior to the birth of the child, to middle age, usually many years after the death of the child. We identified bereaved parents who were participants in the Wisconsin Longitudinal Study (WLS; Hauser et al., 1993), a prospective longitudinal study of a random sample of high school graduates surveyed periodically between 1957 and 1992. The WLS contains information about potential impacts in multiple domains of functioning, including psychological well-being, health, social relationships, and occupational and family roles. Furthermore, we evaluated whether circumstances of the death predicted individual variations in midlife functioning.

Research on the impact of bereavement as a trauma has emphasized significant negative psychological and health outcomes. For instance, Stroebe, Stroebe, and Abakoumkin (2005) found that bereaved persons, especially those with extreme emotional loneliness and severe depressive symptoms, are at risk for suicidal ideation. Li, Laursen, Precht, Olsen, and Mortensen (2005) found that bereaved parents, especially mothers, were at increased risk for a first psychiatric hospitalization as compared with nonbereaved parents. In fact, maternal risk of hospitalization remained significantly elevated 5 years or more after the death. Using Danish national registries, these investigators also found that mortality rates were higher among bereaved than nonbereaved parents, particularly for deaths due to unnatural causes (e.g., accidents and suicide) within the first 3 years after the child’s death (Li, Precht, Mortensen, & Olson, 2003). Bereavement was associated with long-term mortality due to illness (e.g., cancer) for the mothers, presumably because of stress, a weakened immune system, or poor health behaviors (e.g., smoking, alcohol consumption).

The traumatic impact of bereavement has been shown to extend to social functioning and family life. Difficulties have been noted for parental marital functioning, in particular (Najman et al., 1993). One study indicated that the divorce rates among bereaved parents are as much as eight times the norm (Lehman, Wortman, & Williams, 1987). Although a review of the bereavement literature by Oliver (1999) challenged this conclusion, methodological limitations associated with sampling and difficulties in tracking divorced couples make it impossible to draw clear conclusions about marital disruption from previous research (Murphy, Johnson, Wu, Fan, & Lohan, 2003).

The time course for parental grief is uncertain and can be expected to show great variability. Traditional models that described the grief response (e.g., Lindemann, 1944) proposed that grief reactions should be completed within a few weeks to a few months after a death. However, Becvar’s (2000) research, for example, suggested that a more typical time line of grief begins with shock and intense grief for 2 weeks, followed by 2 months of strong grieving, and then a slow recovery that takes about 2 years. Other studies have indicated that even this time line is too short in the situation of a child’s death. For example, Murphy et al. (2003) found that parents reported thinking of the death of their child daily 3 and 4 years after the event, and McClowry et al. (1995) found that parents whose child died of cancer still experienced pain and a sense of loss 7–9 years after the death. Also, emotional ties to deceased children may not be fully severed, and negative emotions might persist despite other forms of positive adaptation (Murphy et al., 2003). Thus, many parents grieve indefinitely (Klass, 1999; Rubin, 1993).

The majority of parents likely accommodate the loss without significant long-term disruption in major life domains; for others, however, “moving on” does not occur smoothly. The extent of disruption and the need for professional help during recovery probably are influenced by the level of preexisting problems and the psychological resources that parents bring to the situation of coping with bereavement (Kazak & Noll, 2004). Among individuals who seek treatment for protracted grief, recent work emphasizes the task of finding meaning in the loss as key to long-term recovery (Neimeyer, 1998). Much of this theory has been based on Frankl’s seminal work (1978), in which he described the vast emptiness that bereaved individuals feel as “existential vacuum.” Likewise, grief has been described as the loss of an “assumptive world,” in that the generalized sense of predictability and stability of the world has been challenged (Emmons, Colby, & Kaiser, 1998; Gilbert, 1997). Accordingly, clinical approaches have emphasized the need to help the survivor find meaning and a sense of purpose for both the deceased’s life and his or her own life in order to regain a sense of well-being (Klass, 1999).

Finding meaning in life should be facilitated by engaging in rewarding activities, such as pursuing satisfying work and participating in community and religious organizations (Sherkat & Reed, 1992), or by having another child after the death and investing in relationships with the remaining children (Najman et al., 1993). For example, Videka-Sherman (1982) considered that having another child after the death was a “constructive action” for the parents and found that their doing so was a significant predictor of better psychological adjustment to the loss. However, this strategy might have unexpected costs, as parents with larger families experienced more estrangement, more anger, and less openness as they dealt with the loss of a child (Nelson & Frantz, 1996), perhaps because more children overtaxed their resources.

The current study, which was based on theory and previous research on parental grief, employed a life span developmental approach to examine the long-term adjustment of bereaved parents and to explore the role of finding meaning in life as a potential mechanism of recovery. We used longitudinal data to identify individuals who had lost a child at some point in their own life course and to evaluate the effects of this event on later adult functioning. The availability of family background information in the WLS provided us the unique opportunity to match bereaved mothers and fathers to a comparison group with similar preparenthood characteristics, thereby elucidating differing life trajectories. From the large population sample, we could identify a sufficiently large group of bereaved parents to detect even small effects for a nonclinical sample that was not self selected for this purpose.

The specific hypotheses were as follows:

  • Hypothesis 1: Although the majority of parents were expected to show effective adaptation to bereavement, there would be evidence of lasting grief in the form of negative psychological, health, social, and occupational functioning in midlife. Specifically, parents who experienced the death of a child would be more likely than would nonbereaved parents to report depressive symptoms, poor psychological well-being, health problems, limited social participation, marital disruption, and limited occupational success. However, because of the search for meaning triggered by grief, which is a critical part of coping with bereavement, we expected that bereaved parents would report a greater sense of purpose in life and more religious participation than would comparison parents.

  • Hypothesis 2: Recovery from grief would be facilitated by the individual’s ability to find a sense of purpose in life, as well as through activities that give life meaning, such as religious participation, social participation, having a satisfying job, having other children at the time of death, and giving birth to a new child after the death. Thus, we expected that, in addition to having direct effects on functioning, these factors would moderate the differences between the bereaved and the comparison parents and would predict less negative functioning (i.e., better recovery) within the bereaved group.

Method

Overview of the WLS

The WLS is an investigation of a random sample of 10,317 men and women who graduated from Wisconsin high schools in 1957 (Hauser et al., 1993). Survey data were collected in 1957, 1975, and 1992, when respondents were age 18, 36, and 53 years, respectively. We focused on midlife functioning in 1992 for participants who had experienced the death of a child between 1957 and 1992.

Participants

We initially identified 530 participants who had reported that one of their children was deceased by the 1992 point of data collection. Data on the age of the child and/or the date of the death were missing for 24 of these cases (5%). Another 78 individuals (15%) were eliminated because, although they had participated in the 1992 telephone interview, they did not complete the 1992 mail survey, which contained the majority of the measures examined in this study. Thus, our sample of bereaved parents totaled 428 individuals. The group consisted of 144 fathers and 284 mothers, which was nearly a 2:1 ratio of women to men who reported experiencing a child death. The men were particularly less likely than were the women to report deaths that occurred during or shortly following childbirth (n = 39 men, 110 women).

To ensure that the bereaved parents were similar to the comparison group on background characteristics first measured in 1957 (when they were age 18), we used the following stratification variables from 1957 to select the comparison group: the occupational prestige scores for the participant’s father, family income, and population of the respondent’s hometown community. Using the median scores for the bereavement sample to dichotomize these variables, we stratified the remaining WLS participants according to these characteristics. Gender of the participant was used as another stratification variable. We selected a comparison sample by randomly sampling from within each stratum the same number of comparison parents as there were bereaved parents in the stratum, which provided equal representation with the bereaved group across all strata. Also, only individuals who were parents and who had completed both the phone and the mail surveys in 1992 were chosen for this group. Thus, the comparison group (n = 428) consisted of a stratified random sample of 144 men and 284 women who resembled the bereaved group on the family background stratification variables. Two-way (Group × Gender) analyses of variance (ANOVAs) confirmed that the stratification produced two groups that did not differ significantly on the stratification variables or other early background characteristics; the latter included family-of-origin size, total years of education for the father and the mother, and high school IQ score, Fs (1, 854) = 0.00 –1.56, all ps nonsignificant.

The bereavement and comparison groups did not differ significantly on any demographic characteristics assessed in midlife, F(1, 854) = .19 –2.11, p = .15–.67, χ2(1–3, N = 856) = 0.41– 3.78, p = .17–.59. The average age of the participants in 1992 was 52.60 years (SD = 0.56). Most participants (65%) had obtained no additional schooling after high school, whereas 15% had attended some college or earned an associate degree, 11% had earned a bachelor’s degree, and 9% had obtained an advanced degree. The modal number of living children was three, which occurred for 28% of the parents; 38% of the parents had fewer than three children, and 34% had more than three. In 1992, 87% of the parents were married. Consistent with the makeup of Wisconsin’s population in 1957, virtually all of the WLS sample (99%) is White. Most parents (93%) reported having a religious affiliation, with 47% Protestant and 40% Catholic, and 48% reported attending religious services at least once per week.

Measures

Depressive symptoms

Depressive symptoms were assessed with the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977), a 20-item self-report inventory designed to measure current level of symptoms. Each item asks how many days in the past week the person has experienced depressive symptoms, such as “feeling lonely” and “having crying spells.” Items were scored 0 (0 days), 1 (1–2 days), 2 (3–4 days), or 3 (5–7 days), so total scores could range from 0 to 60, with a cutoff score of 16 recommended for identifying individuals with clinically significant depressive symptoms (Radloff, 1977). This measure has excellent psychometric properties in studies of midlife and older adults (Gatz & Hurwicz, 1990), α = .88 for the present sample. In addition, a random sample of 79% of the participants reported on lifetime occurrence of depressive episodes lasting 2 or more weeks.

Purpose in life and psychological well-being

Participants completed an abbreviated version of Ryff’s Psychological Well-Being Scale (Schmutte & Ryff, 1997); it included a subscale that measured the belief that one’s life is purposeful, along with five other dimensions of psychological well-being, including autonomy/self-determination, self-acceptance of oneself and one’s past life, environmental mastery, personal growth, and positive relations with others. The abbreviated version included in the 1992 WLS mail survey contained 7 of the original 14 items for each subscale, selected because they had the highest factor loadings in previous research. The response format ranged from 1 (strongly disagree) to 6 (strongly agree). To assess the extent to which the bereaved parents had achieved a sense of purpose in life, we used scores for the abbreviated 7-item Purpose in Life subscale (α = .78). Also, to assess other aspects of overall psychological well-being, we used total scores summed across the items from the remaining five subscales (α = .90).

Physical health

Global self-perceptions of health were assessed with the question “How would you rate your health overall?” The answer choices ranged from 1 (very poor) to 5 (excellent). In addition, the participants completed a checklist of physical symptoms, common diseases/chronic health problems, and medical conditions, from which we formed two scales that assessed cardiovascular health problems and musculoskeletal problems. Each scale included four symptoms or conditions, so that scores ranged from 0 to 4. The cardiovascular health problems included chest pains, shortness of breath, diagnosed heart trouble, and high blood pressure. The musculoskeletal problems included aching muscles, stiff/swollen joints, back pain/strain, and diagnosed serious back trouble. Warren, Hoonakker, Carayon, and Brand (2004) demonstrated that these three health indices were associated with socioeconomic and job stress.

Occupational attainment and income

Household income was a combination of the incomes of the respondent and his or her spouse, and occupational attainment was the occupational prestige score from Duncan’s Socio-Economic Index (Stevens & Featherman, 1981). Both were measured in 1992.

Social participation

Participation in social organizations was assessed with a count of memberships in a list of 17 possible types of social organizations (e.g., civic groups, sports teams), which is an index of social participation (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001). Religious participation was assessed with the frequency of the respondent’s religious attendance in the past year, recorded on a 6-point scale ranging from 0 (never) to 5 (once a week).

Marital disruption

All entrances into and exits from marriages were recorded during the entire period of the WLS. We used the record to identify whether the participant had experienced a marital separation or divorce by 1992.

Job satisfaction

Satisfaction with current job in 1992 was rated on a 4-point scale, ranging from 1 (very dissatisfied) to 4 (very satisfied).

Presence of other children and timing and cause of death

Parents completed a roster of their children that included the birth dates for all children and the date of death for any deceased children. This information indicated whether another child was alive at the time of the death and whether another child was born after the death. Reports on the cause of death were obtained from most parents (n = 384), and these reports showed good agreement (78% exact matches) with data from the National Death Index.

Overview of Analyses

The first set of hypotheses about the effects of bereavement on adjustment and well-being in midlife was evaluated in a series of analyses that contrasted the bereaved and the comparison parents. Variables measured on continuous scales and rating scales were submitted to two-way ANOVAs, with Group (bereaved, comparison) and parent Gender (father, mother) as the two factors. Binary categorical variables were submitted to chi-square tests that evaluated both group and gender differences. The second set of hypotheses about potential predictors and moderators of adjustment for the bereaved parents was evaluated with a series of hierarchical linear and logistic regressions that predicted functioning on the measures of adjustment and well being that differed between the groups. We examined both the main effects of the predictors and their interactions with group membership in order to test for moderation of the effect of bereavement status.

Discussion

The results extended previous findings about grief for bereaved parents to suggest that the death of a child could be associated with longer lasting difficulties for parents than had been previously described. An average of 18 years after the death, the characteristics that significantly distinguished the bereaved and the nonbereaved parents in this study were consistent with research on shorter term outcomes showing that depressive symptoms are common features of grief (American Psychiatric Association, 2000), that depressive episodes tend to follow the death of a child (Li et al., 2005), and that bereaved parents are at risk for health problems and marital problems (Bohannon, 1991; Parkes, 1998). The effect sizes for the contrasts of the bereaved and nonbereaved parents were generally small, which indicates that most bereaved parents were not experiencing clinical levels of symptoms or substantial disruption in midlife. Instead, the elevated depressive symptoms paired with somewhat poorer well-being and lower sense of life purpose suggested sub-clinical levels of distress. Furthermore, the fact that better functioning was not more likely with greater time since the death indicated that bereavement for a deceased child might contribute to persistent problems lasting over several decades for many parents. Neither traditional conceptualizations of grief as having a time-limited impact followed by a return to normal functioning (e.g., Lindemann, 1944) nor the concept of a traumatic grief reaction (Prigerson et al., 1999) in the form of persistent severe symptoms following a death captures the type of long-term difficulties revealed by the current investigation. Instead, the findings are more consistent with a picture of lasting grief associated with this highly significant, often unexpected, and unexplainable loss.

Whereas short-term grief reactions are generally associated with disruptions in occupational, social, and family roles, these difficulties were not apparent in the current findings. The normative functioning in these areas for the bereaved parents likely reflects recovery and a return to typical roles and activities. In this regard, the contrast with psychological distress and health problems as lasting challenges is striking; it suggests that these negative internal experiences may not be evident in social roles and, thus, may not be recognized by others. Accordingly, clinical work with bereaved parents (e.g., Rando, 1993) has suggested that a source of difficulty for these parents is the failure of family and friends to recognize the need for continued emotional support when individuals return to other life roles and their outward signs of grief are not so apparent.

The nonclinical nature of the sample and, for most parents, the lengthy period since the occurrence of the death likely accounted for our limited ability to identify moderators of bereavement effects. Nevertheless, the regression findings highlighted the importance of finding meaning in life as a key to resilience and recovery from grief. The importance of purpose in life as a predictor of long-term functioning, particularly among the bereaved fathers, was consistent with the clinical literature that has focused on this factor (e.g., Neimeyer, 2001). It is possible that purpose in life was associated with depressive symptoms because a sense of purposelessness is itself a symptom of more general depression. Indeed, the finding that purpose in life did not show expected elevations for the bereaved group and was actually lower for this group than for the comparison group might reflect the downward pull of more general depression in reducing the sense of life purpose. However, purpose in life also predicted better health, which was consistent with its role as a determinant of positive adaptation. Thus, it seems likely that existentially oriented interventions that help bereaved individuals find meaning in the death and develop a renewed sense of life purpose might help to reduce lasting distress and future health problems.

In a similar vein, the predictive effect of having other children at the time of the death, which was associated with lower chances for marital disruption within the bereaved sample, can be regarded as a way of finding meaning through important life tasks (Videka-Sherman, 1982). The result was consistent with other research that reported lower rates of psychiatric problems for bereaved parents with more children in the family (Li et al., 2005) and confirmed the expected role of involvement in parenting for promoting positive recovery. However, because having other children in the home was more likely in this sample when the death involved an infant child, as opposed to a child who died later in life, it is not clear whether circumstances apart from having additional children accounted for marital stability. For example, deaths involving older children, where attachment bonds would be expected to be stronger, may be more stressful for marital relationships than are infant deaths. Research is needed to disentangle the effects of these circumstances in samples where these confounds are not present.

A curious feature of this investigation is the smaller number of men than number of women in the WLS who reported that a child had died. Several circumstances might have contributed to the imbalanced gender composition of the bereaved group. First, because the men married at older ages than did the women, consistent with social norms, they began having children later; thus, there was a somewhat shorter period during which a child death could have occurred. Second, the higher mortality rate for men than for women meant that fewer men participated in the 1992 wave of data collection and could be included in our sample. There also were more unmarried mothers than unmarried fathers in the WLS sample. Nevertheless, these circumstances would account for only relatively small differences in the numbers of bereaved mothers and fathers, rather than the 2:1 ratio in this sample. Instead, it is possible that men underreported child death as a way of coping with grief. This form of coping could include simply neglecting to acknowledge infant deaths as bereavement events, as suggested by the particularly low frequencies of these reports by men, as well as more active strategies involving either suppressing thoughts about the child or refusing to acknowledge the bereavement to the study interviewer. Interestingly, lower reports by men than by women on child-related conditions are not unique to the situation of child death. In working with interview databases to investigate other stressful parenting experiences, including raising a child who has a developmental disability or severe mental illness (Seltzer et al., 2001), we have consistently obtained less frequent reports of these conditions by men than by women. Because bereavement-related differences were similar for men and for women in this study, it is not clear whether or how underreporting of the event by men might have influenced the findings. However, it raises intriguing questions for future research about how avoidance, suppression, or denial might function as long-term coping strategies under these circumstances.

There were limitations in the design of this study that should be considered by those evaluating the results. One limitation was that the putative moderating mechanisms, which included religious and social participation and the presence of rewarding work, were assessed long after the death and concurrently with the outcomes examined. Although this situation is useful for examining correlates of recovery, the unavailability of measures of these factors either before or at the time of the death might have accounted for the failure to detect significant effects in this study. Another limitation was that recruitment of the cohort sample in one geographic location might have reduced generalizability to other groups. Most notably, racial/ethnic minorities were not represented in the WLS, due to the low numbers of minorities living in Wisconsin at the study’s beginning. Thus, ethnocultural differences in attitudes toward death and bereavement (e.g., Hayslip & Peveto, 2005) that might affect long-term adaptation for parents could not be discerned in this sample. There were also limitations associated with the use of unstandardized and single-item measures, in some cases, which suggest that we should be cautious when interpreting the nonsignificant findings in particular.

Regarding implications for policy and intervention, the findings point to the need for detection and intervention for parents who do not typically present for clinical services. Kazak and Noll (2004) identified three levels of risk for parental bereavement that are likely associated with different needs for professional services. The service recommendations include acknowledgment of the loss in order to facilitate coping for all parents, including those who adapt well; specialized grief interventions for parents who seek help for complicated grief reactions; and intensive, broad-based interventions for highly vulnerable parents who experience multiple serious problems following the death. The relatively high rates of significant current depressive symptoms and cardiovascular health problems, along with a history of marital disruption in our nonclinical sample, might be accounted for by high-risk vulnerable parents, but they also might reflect a need for greater attention to sub-clinical levels of dysfunction in parents who otherwise are functioning well. It seems that these problems are not likely to lead parents to seek specialized interventions focused on bereavement. Furthermore, the lack of empirically supported interventions for parental grief (Kazak & Noll, 2004) leaves open the question of whether long-term problems could be prevented effectively. For example, whereas some form of existentially oriented therapeutic intervention might be helpful for parents who did not initially seek out services, there is a need for empirical investigations to clarify this issue.

Acknowledgments

This research was funded by National Institute on Aging, National Institutes of Health Grants R01 AG20558 and P01 AG21079.

Contributor Information

Catherine H. Rogers, Department of Psychology, Georgia State University.

Frank J. Floyd, Department of Psychology, Georgia State University.

Marsha Mailick Seltzer, Waisman Center, University of Wisconsin—Madison.

Jan Greenberg, Waisman Center, University of Wisconsin—Madison.

Jinkuk Hong, Waisman Center, University of Wisconsin—Madison.

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The paramedic who came to the house when Denise Turner's baby son died, knew exactly what she ought to do. "He said, you need to sit down and you need to start to grieve," she says. But Denise didn't want to grieve. She wanted to put her jacket on over her pyjamas and take her six-year-old daughter to school. "Amy didn't know Joe was dead at that stage. All I'd told her was that he wasn't well and we needed to call an ambulance. I knew the police were about to arrive, because it was a cot death and I knew the house would soon be swarming with people, and that it would be a very scary place for a little girl to be. I desperately wanted to get her out, so she wouldn't be left with difficult memories that might make Joe's loss even harder to cope with."

Denise felt angry with the paramedic for trying to tell her he knew best. "I was furious. I said to him, what are you going to do? Stop me from leaving the house?"

What she now knows is that the professionals bereaved families have to deal with, and the wider community, have a very narrow frame of expected behaviour and outcomes for those who are bereaved when a child dies. Recently, this has become the focus of Denise's research as an academic.

Denise did take Amy to school that day. Nine years on, she knows she was right. "Amy remembers Joe but she doesn't have traumatic memories about that day and I'm so pleased about that," she says.

In fact, Amy, 15, her brother Dan, nearly 11 (he is Joe's twin), and Denise herself are all doing just fine. "People think there must be fallout. They think there must be deep-seated issues somewhere and I know they sometimes go looking for them, especially in Dan because he and Joe were twins. But I don't think they are there – and I don't think happy and thriving and sorted are how people expect us to be. There's this idea that losing a child is the absolute worst thing that can happen to you, and that once it happens you can't really ever recover.

"So a bereaved mother is expected to behave like the French Lieutenant's Woman, standing on the Cobb staring out to sea. Or she sits in a corner weeping. But that's not how I've been – and when I started to interview other parents who had lost children, I realised it's not how they were behaving either."

For her PhD research at Sussex University where she now lectures, Denise talked to other bereaved parents. Her focus was on how families are treated by professionals when they experience a sudden death in childhood, but when she presented her interviews to academics research panels – ie other people – to gauge their reactions, she was surprised by the response. "Some of the stories were the testimonies of mothers who, like me, hadn't behaved in a way others might expect.

"One mother, who I'll call Cathy, had lost her son Dylan at six weeks of age. When she realised he wasn't breathing properly she called an ambulance. That triggered a rapid response team, and some of the police who came were actually armed. Cathy had other children so that response, which she understandably considered to be entirely inappropriate, made her very angry and she was still angry when I interviewed her."

One woman on the panel, on hearing Cathy's story, told Denise: "I'm sick of this aggressive woman. She's not behaving as a grieving mother should."

That prompted Denise to ask: how should a grieving mother behave? And what she realised was that a mother who has a lost a child should have the right to behave exactly as her instincts guide her. That's because, although she profoundly disagrees with the idea that a child's death is something it's impossible to recover from, she is clear that it's one of the biggest blows imaginable. The irony, which was far from lost on her, was that while society acknowledged the scale and depth of the loss, it proceeded to erect a very strict frame of reference about what was acceptable behaviour. So much so, she says, that bereaved parents sometimes end up trying to fit in to what they feel is expected of them, rather than doing what feels right to them in the days, weeks and months after a child's death.

"People would say, 'You need counselling.' I thought, what's that going to do? It's not going to bring Joe back, is it? So counselling didn't feel right for me, but the voices around me were so insistent that I remember thinking, should I actually go for counselling?

"If you don't behave in a certain way – if you're too angry, or you don't seem to be engulfed in your grief, for example – the people around you withdraw their support. They get angry with you, and you lose their sympathy. I think some people do try to fit in because they don't want that to happen to them – but where you see it all coming out is on the forums and chat boards on bereavement websites because that's the only safe place to express it. The problem with that is that these places can become ghettos and people can get stuck there."

Among friends, says Denise, there was an almost ominous expectation that she was bound to be constantly on the verge of tears. "One person even said to me, a week or so after Joe died, haven't you broken down yet?" she remembers. "Another woman said I'd always be known in our town as the woman who lost her son. But I really didn't want to be known as that. I started wearing my lipstick again very soon afterwards because I didn't want to become that woman. When I went back to playground 10 days or so after Joe died, some people were surprised – and it begs the question, what else did they think I'd be doing? Sitting inside crying, presumably: but I had another baby to look after."

In general, says Denise, reaction when she was out and about was very mixed. "There were people who never even mentioned the fact that one of my children had disappeared," she says. And there were those who seemed almost attracted to her in the aftermath of the tragedy – the ghoul-seekers, who had definite ideas about how anguished her life must be. Others, she says, just stood in front of her and sobbed.

One of the things Denise finds interesting now that she's looking at this behaviour more objectively is how parents who have suffered a loss are in some way symbolic in the wider world: other people have expectations about how they should behave because they represent, she says, the greatest loss of all. "People seem to need you to be very, very sad and it's not for yourself.It's almost on behalf of everyone," is how she describes it.

However people reacted, though, it often seemed to Denise to be less about her feelings, and more about their own.

Though her research to date has centred on parents who have been bereaved as a result of sudden, unexplained child death, Denise believes these behaviour expectations are applied to parents who lose children in all situations and she now hopes to broaden her research, into a wider experience of child loss. She will look at the emotional fallout for professionals when they have to deal with a family who have lost a child – they too, she believes, experience suffering that is not properly acknowledged or dealt with.

The worst aspect for parents who have lost children – worse, even, than having to hide their real feelings – is, says Denise, that the truth about survival is far more empowering and positive than is generally understood. She has not gone to stand on the Cobb, like the French Lieutenant's Woman, and you won't find her weeping in the corner at a party.

Denise has done with her grief what any of us who have been bereaved have to do: she has folded it into herself, made it an integral part of who she is, and as a result she is stronger and more sure of herself and more aware of the frailty of life.

Like Denise's own surviving children, I grew up in a family where a young child died, so I have known this at first-hand too. Like Denise, I have used the experience of being bereaved to inform and guide the sort of work I do and, like her, I have sometimes come up against people who feel it is not appropriate or – as Denise was once told, by a bereavement charity, her work is "misguided".

She has also been warned that she needs to honour Joe's memory but, as she says, what does that mean? She feels the best way to honour Joe's memory is to live as fully and as well as possible, for her children and for herself. Yet saying that seems somehow to bring other people up short or send them off-balance. It is as though the death of a child is so terrible that it's difficult to acknowledge that anything positive can possibly come out of it, but for the people left behind, that is precisely what they must try to find, even though they would have done anything in their power to make things different.

Denise defines herself, she says, not as a bereaved mother, simply as a mother: being a good mother, a protective mother, to her surviving children has been her overriding ambition since Joe's death. That, of course, is why all she could think about on that morning in March 2005, when she found her son dead in his cot, was the impact on Amy. She could do no more for Joe, but she could protect her other children.

Underlying Denise's research is a fascination with boundaries because she believes that some of the damage is done because the professionals who are involved when a child dies – particularly the police and social workers, though it could apply to some in the medical world as well – are as unable to deal with it as anyone else and hide behind procedures and expectations as a coping mechanism.

"They say a child's death is the worst thing that can happen to a parent but I sometimes think it's the worst thing that can happen to a professional," she says. "They are trained to sort things out, to make things better, to get you through – and there's no sorting this out or making it better, or getting through it."

If professionals could be more honest about their own feelings, perhaps they could be more accepting of following a bereaved parent's lead on how to behave. Instead, in a desperate need to retain control in a situation that is entirely outside anyone's control, they sometimes seek to impose their own ideas about how the bereaved parent should behave – just as the paramedic did that day at Denise's house. In other words, his response was all about him and very little about Denise, and that, in turn, is what made her so angry – and makes her angry still when she remembers it.

But she balks when she's accused of attacking professionals. She was a social worker herself, for 10 years before Amy was born. Another anecdote from the day of Joe's death concerns an exchange between a policewoman and herself. "She said social workers were on their way and would want to interview me, and I said: 'Actually, I'm a social worker.'

"This woman couldn't quite understand what I was saying and she said: 'You're a social worker? I thought you were the mother …' I was still in my pyjamas at that point, so it was pretty obvious who I was! But she couldn't quite compute that I could be both a parent who'd lost a child and a social worker, and I think that's at the root of a lot of the issues: we worry about how we can be two people at once.

"But the key is humanity: we have to give professionals permission to be human beings first, to meet people half way. That's why I don't feel I'm attacking professionals because what I'm saying would help them learn how to cope better themselves with these situations, as well as being able to better help others."

That matters because what no one wants is what one of Denise's interviewee parents said about their son's cot death: "He said that the way the family was treated that day was worse than actually losing their son."

The terrible truth at the kernel of any child's death is that we as human beings find it almost impossible to make sense of – it goes against every grain in our psyche. It's not the natural order of things and we know it's not how the world was meant to be.

Where a child's death is as Joe's was – random, unexplained, out of the blue – the need to explain it often seems overriding. "As a former social worker, I understand the need to protect children; but in most cases when a child dies suddenly, there has been no crime. So our response is overdramatic and not well thought through. It beggars belief that, when a cot death occurs, no one takes into account the feelings of any other children who might be in the house at the time – they are treated as an irrelevance, when in fact they could be being psychologically harmed by the arrival of police response teams and social workers and the fact that the finger of suspicion is pointing at their parents. It's undermining at the very time families most need support."

It's a tribute to her resilience that, despite all this, Denise has made it through. But not every parent who loses a child is as lucky: some are lost in that no-man's land of having to respond to others' expectations rather than being able to work through their feelings on their own terms. What is especially sad, Denise believes, is that so few have felt able to tell their own stories of survival: stories that centre on a loss that would have seemed unthinkable, but which they do move through and even emerge – as Denise has – with a new, enjoyable life.

"Ultimately, our stories are uplifting ones and the ending is a happy one," she says. "Because we have hit the bottom, we've gone to the lowest place you can go and found there was still something solid beneath our feet and that, eventually, we could start to climb out again. That's a hopeful message, one I think it's important to share."

• Denise Turner will co-present a session, Telling the Untellable, at the Economic and Social Research Council's Research Methods festival, Oxford, on 8 July. More information, ncrm.ac.uk/RMF2014/home.php. Denise has written a fuller explanation of her research here