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MEDIATING GRIEF: POSTMORTEM RITUALIZATION FOR CHILDREN

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SAGE Open SO-11-0028 Original Manuscript Nursing < Behavioral Sciences, Psychiatry < Behavioral Sciences, Counseling Psychology < Applied Psychology < Psychology < Social Sciences, Psychology < Social Sciences, Psychotherapy < Clinical Psychology < Psychology < Social Sciences, Family Studies < Sociology < Social Sciences This is an exploratory study to better understand the benefits of ritualization for bereaved parents and the factors that influence ritualization. Through the phenomenological analyses of 19 in depth interviews with bereaved parents, the results of this study reveal that bereaved parents engage in ritual to: 1) maintain continuing bonds with their child, 2) help them cope by offering them a sense of control, and 3) provide a means toward posttraumatic growth by honoring and memorializing their child. These factors, in turn, appear to mediate grief through meaning reconstruction in the aftermath of the childs life and death within the context of social and cultural influences. Implications for providers are discussed.

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Running head: RITUALIZATION AFTER A CHILDS DEATH

MEDIATING GRIEF: POSTMORTEM RITUALIZATION FOR CHILDREN

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RITUALIZATION AFTER A CHILDS DEATH

Abstract This is an exploratory study to better understand the benefits of ritualization for bereaved parents and the factors that influence ritualization. Through the phenomenological analyses of 19 in depth interviews with bereaved parents, the results of this study reveal that bereaved parents engage in ritual to: 1) maintain continuing bonds with their child, 2) help them cope by offering them a sense of control, and 3) provide a means toward posttraumatic growth by honoring and memorializing their child. These factors, in turn, appear to mediate grief through meaning reconstruction in the aftermath of the childs life and death within the context of social and cultural influences. Implications for providers are discussed. Keywords: child death, infant death, stillbirth, parental mourning, grief, bereavement, ritual

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RITUALIZATION AFTER A CHILDS DEATH

MEDIATING GRIEF: POSTMORTEM RITUALIZATION AFTER A CHILDS DEATH

What is Ritual and Why do Humans Ritualize? Rando (1985) defines ritual as a specific behavior or action which gives symbolic expression to certain feelings and thoughts (p. 236). Ritual has also been defined as any activity sacred or secular, public or private, formal or informal, traditional or newly created that includes the symbolic expression of a combination of emotions thoughts, and/or spiritual beliefs of the participant(s) and that has special meaning (Castle & Phillips, 2003, p. 43). There are emotional, as well as evolutionary, benefits to ritualization that confer benefit to individuals and groups. Kastenbaum (2004) describes ritual as:

1. Acts performed by people who are unified as a group. 2. Rituals are established patterns, collective expressions.

3. Rituals involve a knowing of something that others dont.

4. Rituals address the most difficult aspects of the human experience. 5. Rituals invoke the past for control over the future (p. 98). Death rituals transform and mediate grief, facilitate meaning-seeking, and help mourners maintain a symbolic connection to the dead. Painful emotions (Parkes, 1996) can be effectively negotiated, perhaps, even channeled, through ritual after death. For bereaved parents, there is often a physical and psychological imperative to remain bound to the child (Cacciatore, 2010).

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RITUALIZATION AFTER A CHILDS DEATH They maintain an ongoing connection with their dead children through a sacred symbolic space in which the children now reside transition then becomes a matter of finding a new psychosocial existence that has no formally recognized social status (Romanoff & Terenzio, 1998, p. 707). Yet, very little is known about the expanding parameters of ritualization during the postmortem period for bereaved parents in contemporary society. A Historicultural Examination of Ritual

Look at the image of a survivor of some carnage and, knowing nothing of her language, culture, beliefs, or circumstances, you can still recognize in the fixed action patterns of her facial muscles the unmistakable lineaments of grief. That instant recognition, the universal predictability of certain aspects of human beings, whether in a facial expression or in the stages of mourning, is an emblem of our kinship and an imperative of empathy (Sapolsky, 1997, p. 100).

Across cultures and throughout history, human civilizations have developed, embraced, rejected, and restructured rituals around the two most common experiences: birth and death. In particular, rituals have been used universally as a way of coping with death (Beder, 2002), providing an opportunity to express emotions and offering mourners an antidote to powerlessness (Miller, 1999). Death rites and rituals were not born of modernity. Neanderthal rituals for the dead date back nearly 50,000 years to burial sites where archaeologists discovered tools, ornamental shells, and even food left for loved ones. The thought of a Neanderthal placing flowers around the body of a loved one is tearfully moving; the hand that clutched those flowers less deft but we feel the shock of kinship and familiarity (Sapolsky, 1997, p. 116). Ancient civilizations including the Romans, Egyptians, and Greeks also engaged in sophisticated ritualization of the dead (Lensing, 2001). In ancient Finland, babies born dead would be buried

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RITUALIZATION AFTER A CHILDS DEATH under or near the house, in proximal coexistence with the family. During this period, no

funeral industry existed and family members, friends, and neighbors were responsible for the burial of the dead (Laderman, 1996, p. 9). In her book, Dangerous Voices, Gail Holst-Warhaft suggests a relationship between the deritualization of death in ancient Greece and the attempt to limit the power of women, whose role was to lament and otherwise preside over ritual mourning[the State] considered mourning womens lament dangerous to the women themselves and often classified these women as mad, though perhaps only as a way of preventing them from consolidating the power of expression that grief afforded (Kanter, 2002, p. 1). However, it wasnt until the eighteenth century that clergymen ordered the dead to be buried in the churchyard death became frightening in Europe (Vaisanen, 1999, p. 146). The pattern for most Protestants who died in the antebellum urban setting contained the three fundamental elements also found in the rural setting: cosmetic preparation at home, transportation to the gravesite, and internment or entombment in a designated place friends and relatives transported the lifeless body from the place of death to a temporary, intermediate location, and from there they deposited in a space marked off and reserved for the mortal remains. The handling of the dead included washing, wrapping, exposing, encasing and disposal (Laderman, 1996, p. 39). In the United States, during the first half of the nineteenth century, socioeconomic status affected death rituals. The only time egalitarianism was apparent in urbanized death was at times when great epidemics amassed corpses. Otherwise the children of the poor were not covered by the umbrella of religion, ritual, and conscience (Kastenbaum, 2004, p. 217). Throughout much of history, divisions of economic and social class had a significant influence on the disposition

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RITUALIZATION AFTER A CHILDS DEATH and ritualization of the dead as funerals for the wealthy were guarded; yet those of the poor were easily raided (Sapolsky, 1997, p. 118). After World War I, hegemonic, economic forces emerged from local and national organizations: professionals and experts took their position over the dead and corpses were subsumed by the opportunistic nature of the capitalist urban marketplace into the American way of death (Laderman, 1996, p. 10; Bertman, 1991). Gorer (1965) asserted that this was the beginning of the end of traditional mourning rituals. Death moved from an intimate occasion whereby mourners were at ease with their dead and engaged in potent, approbatory rituals affirming grief and communal mourning to an occasion in which many aspects of mourning and ritual. The sense of control during the mourning period and the simplicity of death (Laderman, 1996) were lost in its institutionalization. Aries (1975) notes other factors associated with the interdiction of mourning. Most interestingly, there is a modern need for happiness that

emphasizes the moral duty and the social obligation to contribute to the collective happiness by avoiding any cause for sadness by appearing to be always happy, even if in the depths of despair (pp. 93-94, as cited in Layne, 2003, p. 66). The ritualistic expressions of mourning women and certainly more recently men- are often incongruent with this ideology. Thus, these responses are often seen pathologized in the medical literature from the late twentieth century (Rothaupt & Becker, 2007; Kanter, 2002). And if the language of feminine grief has been represented as hysterical, masculine grief has scarcely been represented at all (Kanter, 2002, p. 2). Kastenbaum (2004) agrees: deathing and birthing, he says, have been largely medicalized, with most people being born and dying in institutions.

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RITUALIZATION AFTER A CHILDS DEATH There has been little exploration into how culture affects the way a person or family deals with the death of a child and the ensuing rituals. The experience of death is universal, yet,

expressions of grief and concurrent rituals often vary despite this emblem of kinship (Sapolsky, 1997). The dead are collective representations that mediate the larger culture and that reinforce social solidarity and identity (Klass & Goss, 2003, p. 787), and many cultures are awash with death rituals that have endured the test of time. Hsu, Kahn, Yee & Lee (2004) discovered that in cases of paternal death in Taiwan, ongoing bonds through meaningful rituals are encouraged. Such forms of communion with the dead help children address their grief and restore wholeness, even when the father died prior to their birth. This bond helps widows cope with and locate the long-term sense of incomplete wholeness felt by many widows in the same position as depression as defined by Western DSM diagnosis

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system (p. 781).

Hispanic culture often includes a novena after death, a nine-day period following the funeral when mourners recite the rosary in the name of the dead child. Families are often left undisturbed during this period. Dia de los Muertas, or the Day of the Dead, is an ancient ritual held every November 2nd that celebrates the dead. Food may be offered at altars. The dead are not separated from the living; rather, they continue their presence in the family as grievers often do not relinquish bonds: The word death is not pronounced in New York, in Paris, in London, because it burns the lips. The Mexican, in contrast, is familiar with death, jokes about it, caresses it, sleeps with it; it is one of his favorite toys and his most steadfast loves (Paz, as cited in Bertman, 1991, p. 3).

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RITUALIZATION AFTER A CHILDS DEATH Death is a sad, but accepted, part of life for many heritage-consistent Hispanic families, integrated into daily routines, where children are included in rituals and mourners express their emotions openly (Corr, Nabe & Corr, 2006). Death is a ubiquitous theme salient in the literature, on murals, in cutout paper figures and on the streets (Irish,1993, p. 76). Native American culture is rich with its own cultural responses and rituals after death. There are more than 550 American Indian tribes in North America alone. Today, the federal government recognizes more than 300 tribes (Nichols, 1998). For example, Clements, et al, (2003) in observing Navajo, or Dineh, traditions describes an elaborate four-day funeral rite in which families dispossess the deceaseds personal belongings and openly mourn. The

deceaseds hair is tied with an eagles feather to symbolize their return home and the deceased was buried in the familys hogan (p. 23). On the fourth day a ritualistic cleansing takes place and mourners, from that day forward, do not speak the name of the deceased. In Hopi culture, the deceased are offered new names upon death to carry into the afterlife. The Sioux Indians bury a traditional hatchet in the casket to ward off demons (Leming & Dickinson, 1990). In traditional Chinese culture, death and marriage are the two most important events in the life of the family (Ho & Bortherson, 2007). Death requires the attention of the living be focused upon the larger meaning of life and family (p. 5). The death of a child may be perceived as a bad death if either the parents or grandparents are still living. In fact, parents and grandparents of the deceased child are not expected to attend the funeral as the loss is against nature and may bring misfortune to the family (p.5). Of particular salience within Chinese culture is the birth of a son. If a male child has died, particularly if there are no other male children, this loss is viewed as the greatest sadness for the parents and the family (p.5). Despite the profundity of the loss,

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RITUALIZATION AFTER A CHILDS DEATH the services tend to be attenuated, and public displays of grief are considered to be inappropriate (Tanner, 1995).

The mizuko kuyo, a modern Japanese memorial practice for dead babies and children modeled after sezo kuyo, ancestor worship, is an attempt at the (re)establishment of a mother-child relationship (Harrison, 1995, p. 67). The child is given a Buddhist death name (homyo or kaimyo), as traditionally done with adults who die, formally acknowledging their existence (p. 69). Previously, very young children had been excluded from formal memorial and funerary services for the dead. Yet, it is through this ritual, they believe, the parents pain is connected with the childs pain, and each is mitigated by the union. This ritual is considered important for mothers in unsilencing their losses and for fathers to gain control over their losses (Harrison,

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1995).

In modern day Netherlands, a remarkable demonstration of acceptance of babies who were stillborn was developed and has since persisted:

It started in 1999 on the evening of All Souls. It was the year preceding the new millennium that gave rise to a discussion about former practices within the Catholic Church. In the parish of Reutum where I worked, we talked about the grief for unbaptised children who have been buried in unconsecrated ground for years. Without saying so to anyone, I decided to do something about it. I had found out beforehand where unbaptised children had formerly been buried. That night we all stood together in the graveyard. I was blessing the graves when I spontaneously decided to bless the area of unconsecrated ground also. You could have heard a pin drop. Maybe everyone was surprised by my action. What stuck me most that night was that suddenly an older lady walked from her husbands grave with a candle in her hands towards the spot that I had just consecrated. She placed the candle in the sand. Later this lady told me that she had finally got to know the final resting place of her child. Then I thought: we have to create something, a monument where people can go. A real place, not just a strip of sand. And so the idea developed. Six months later the monument was revealed (Kerkhof-Jonkman as cited in Perleen, 2009, p. 179)

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RITUALIZATION AFTER A CHILDS DEATH And so began a national movement which now seeks to honor the social identity of stillborn babies, with more than 150 monuments for stillborn children found in graveyards since 2000. This is an example of societal recognition for stillborn children as the monuments bring about

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the integration of stillborns into the world of the living as well as the world of the dead(Peelen, 2009, p. 184). The construction of these monuments exposes the struggle over the limits to the right of existence; the boundaries between non-life and life, between life and death. (Peelen, 2009, p. 174). In the Netherlands, increasing interest in perinatal death points to the need to evaluate the explicit struggle for their existential right (Peelen, 2009, p. 174). In a post-war United States, ritualizing through monument is a centerpiece of coping. Those involved in designing, funding, and building twentieth century war memorials are exercising their moral duty to remember (Layne, 2003, p. 220). These rituals of collective grief have become more public since the tragedy of September 11, 2001 and have move[d] ritual into the public sphere and extend the community of support beyond the individual (Beder, 2002, p. 402). In ritualistic acts of commemoration, community members write letters, leave flowers, erect walls and statues and buildings, and post photographs of the dead. Internet memorializing and virtual graveyards are increasing in response to the web communitys need for public acknowledgement. Bereaved Parents and Ritualization According to Neimeyer (2001), the constructivist model informs recent shifts in bereavement hegemony. Of particular relevance to this study are the trends toward idiographic approaches which challenge the hegemony of stage-based approaches, the growing body of qualitative bereavement data , identity and meaning reconstruction, shifting views away from the

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RITUALIZATION AFTER A CHILDS DEATH medicalization of bereavement, and narrative mourning models. In particular, an individuals cognitive narrative is often disrupted when faced with traumatic loss (Neimeyer, 2005/2006). Neimeyer (2004) describes the processing of these narratives as organized micronarratives of everyday life into macro-narratives thatguides our performance on the stage of the social world (p. 53-54). The radical changes that ensue following traumatic death force the bereaved

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person to reorganize their narrative, even in the face of suffering (Neimeyer, 2005/2006). This is often done within the social prescriptions of an individuals culture. For example, Layne (2000) describes the predicament facing many women in the United States who wanted to ritualize following perinatal death. She posits that the death of a baby during the 1980s and 1990s trapped women between two opposing forces. One being that of the increasing importance of the unborn child within society matched against the deep-seated cultural taboo concerning reproductive choices (Layne, 2000 p. 322). Because women tend to actively construct the existence of the child from the time of the first pregnancy test through rituals of life such as books, developmental tracking, sonograms, and hearing the heartbeat, women are more and more attached to their child(ren) prior to birth. She further reflects on the realness of the child that is solidified each time the expecting parent relates the news to another (Layne, 2000). Names are often given during the final weeks of pregnancy, and baby items are purchased in preparation, material representations of identity. Once the babys death occurs, parents are confronted with the social reality that empathic responses and support are limited due to these cultural taboos, and the incipient personhood of the wished-for child is revoked (Layne, 2000, p. 323). The cultural denial, lack of tangible memories or rituals, and systemic

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RITUALIZATION AFTER A CHILDS DEATH delegitimization belittles the importance of the loss (Layne, 2000 p. 323; Cacciatore & Bushfield, 2008). Walter (1991) asserts that death is highly problematic for the modern individual but not at

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all for modern society, a conclusion he says that results in the lack of ritual surrounding [death] today (p. 307). In Western culture, as the media is obsessed with death there exists a paradox wherein individuals are unable to talk about their own personal grief (Walter, 1991, p. 295). For the most part, the modern Western world continues to repress death and its symbolism in much the same way as the Victorians repressed sexuality (May, 1969, p. 106). In his book Love and Will, Rollo May (1969) says:

Death is obscene, unmentionable, pornographic death is not to be talked of in front of the children, nor talked about it at all if we can help it. We dress death up in grotesquely colorful caskets in the same way Victorian women camouflaged their bodies we throw flowers on the casket to make death smell better we act as though the deceased had somehow not died; and we preach a psychoreligious gospel that says the less grief the better (p. 105). There is some residual resistance to ritualizing a dead child both culturally, where some find it morbid and unhealthy, and some clinicians are reluctant to recognize its value (Jones, 2002, p. 70). In others cases, health care and agency administrators often have a why bother attitude toward the ritual (Jones, 2002). This ambivalence translates to other means of ritualizing the deaths of babies and children who die, such as recent laws in various states preventing roadside memorials after motor vehicle accidents (Sharp, 2005). Western culture, in general, fails to provide families with rituals and other established means by which to remember babies who died before they became a part of society (Cote-Arsenault, 2003, p. 35). Walter (1991) notes that the bereaved often are isolated and may well report being treated as lepers (p. 301). Thus,

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RITUALIZATION AFTER A CHILDS DEATH they often seek companionship with like others as a source of support, and often this is within

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the context of a support group (Walter, 1991). Indeed, there are powerful internal and external forces that prevent truth from surfacing and societal expectations can reinforce shame making mourners more likely to hide (Richman, 2006, p. 641). This study explores how and why bereaved parents ritualize, examines factors that influence or discourage ritualization, and offers suggestions for clinicians and practitioners who work with

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bereaved families.

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METHODOLOGY Participants and Procedures

This study used a phenomenological approach, qualitatively describing the subjects lived experience. Primary data were collected through in-person, audiotaped interviews with nineteen different subjects, all conducted by the primary researcher. The subjects were recruited through two local self-help support groups for bereaved parents. Both support groups are open format groups and relationship-specific; that is, they are for bereaved parents solely, though the children died at various ages and from various causes. All data were collected using eleven open-ended questions which guided the interview. Question one (Q1) inquired about the exceptionality and individuality of the circumstances surrounding the child(rens) death(s). Questions two (Q2) through five (Q5) focused on actualizing the rituals. This section included questions about funeral and/or memorial service, contactuality (seeing/ holding the child after death), role in planning for service(s), and ways in which the subject has chosen to ritualize (details of ritual,

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RITUALIZATION AFTER A CHILDS DEATH private or public, etc.). Questions six (Q6) through eight (Q8) explored the personal meaning

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attributed to the ritual, including perceived benefits and adverse effects which have emerged from the ritualization process. Finally, questions nine (Q9) through eleven (Q11) focused on social support, including the responses and roles of others in remembering their child(ren). Additionally, Q11 prompted reflection about how others have influenced the way the parent remembers and memoralizes their child(ren).

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Data Analysis

Data from the qualitative interviews were first coded verbatim into thematic categories, or psychological meaning units (Giorgi, 1985), including contactuality (holding/seeing child after death), funeral and memorial services, purpose, benefits, negative aspects, responses of others, those involved, influences on how to ritualize, realizations, times of year, public or private and miscellaneous or other. If a theme was repeated within any one interview, each occurrence was counted separately for purposes of data collection. Data were then thoroughly reviewed and subcategorized into themes that identified and expressed the phenomenologically lived experience of the interviewees. These processes not only allowed the isolation of common ideas but illuminated important perceptions about the meaning of rituals, beginning in the early days following their childs death. Descriptive Statistics Participants were comprised of both male and female responders (parents to the deceased child). In the sample, fifteen respondents were mothers and four were fathers. The age of subjects ranged from 28 to 51, with a mean of 36.25 at the time of interview. There were fifteen

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RITUALIZATION AFTER A CHILDS DEATH Caucasian/European Americans (78%), one African American (5.5%), one Native American-

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Navajo/Hopi (5.5%) and one Asian individual (5.5%). Self identified religious beliefs included one Buddhist (5%), one Nondenominational Christian (5%), eight Christian (29%), one Traditional Navajo (5%), two Episcopalian (11%), 2 Catholic (11%) and one Lutheran (5%) and three individuals stating no religious preference (16%). The socioeconomic status of the participants included 5% each lower and upper, with the majority (90%) falling within the middle socioeconomic strata. The ages of the children at the time of their death ranged from stillbirth to fifteen years of age. The nature of death was most often sudden and unexpected and the time from the death until the interview ranged from one to 18 years. RESULTS

Parents reported feeling compelled toward physical contact with their child. Some described an intense yearning to hold and care for their deceased child. In addition to holding, touching, and rocking, some parents of younger children chose to bathe their child. Two of the 19 total participants reported that their children died in [their] arms while eleven others saw their child immediately after death. While many parents held (n=7), stroked (n=1), rocked (n=2), and even crawled into bed with (n=1) their child during the postmortem period, one participant in the study reported turning away from their dead child. Rituals that offered something tangible such as locks of hair, hand and foot prints, and photographs were important to many parents. In particular, parents suffering perinatal death made reference to looking at every part of the baby, commenting on how they looked and felt, as if to memorize their features. Parents were influenced by the way others responded to their rituals during the acute period of loss. One parent stated, I walked around with him on my

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RITUALIZATION AFTER A CHILDS DEATH shoulder. I talked to him. Then everyone started coming in. Some looked at me like I was insane for holding him the older people like why would you do that? (P15) Even more

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parents expressed a desire to have someone to guide them during their moments after death. We stayed with him and just loved him. I wish I held him longer. I wish I had asked to see him longer. I wish I had asked to see him again. To have spent more time caring for him, bathing him, rocking him. Why didnt I think of these things? (P5) One mother of a 16-year-old boy who died stated that I made the nurses clean him up and I crawled into bed with him for a few hours. I wanted to remember how he felt and looked. Every whisker, every freckle, every part of

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him (P1).

When asking about regrets, there was an overwhelming response by parents who did not hold their child now wishing that they had (n=6). For those who did hold their child, regrets surround the amount of time they were allowed to be with their child, reflecting an overwhelming feeling that they regret not holding, touching, and being with their child longer (n= 14). One mother stated that no matter how long she would have been able to hold her child It would have never been enough (P5). Twice, participant 4 reflected that he had one chance to hold his child and I turned it down. He further elaborated that I couldnt get my body to respond to holding her. Participant 18 reflected that, as his wife held their child, she asked him to do so as well. I said no because it hurt too much. Additionally, for those who did hold their child, there were seven comments about regret over not holding their child longer. Along similar lines, parents also regretted not spending more time with their child in the moments following death (n=8). Other regrets included not kissing the child, not having more time alone with the child, not

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RITUALIZATION AFTER A CHILDS DEATH bathing him or her, as well as not rocking or talking to the child. Rituals during the acute period seem to be particularly potent.

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Having photographs of their children was a universally important thing to all the parents who experienced perinatal death and for one of the mothers of an older child who died. Unfortunately, for some, photographs were not taken nor offered: No pictures. I thought a lot about it but my mom said it was morbid. (P8) Another mother reflected We didnt have a camera or think we needed one. Now Im so upset we dont have photos You build memories on the photos. Its the only real, visual memory because things fade and change. (P3) Another parent reflected, I documented his entire life so I felt it was appropriate to document his death. (P2)

Parents expressed a range of very similar emotions from feelings of disbelief and shock (n=5) to depersonalization, feeling out of it, and dissociation from reality (n=4). Losing him was like getting hit with a baseball bat. Another stated, Pieces of me were gone (P16). The anguish is described by a participant who said, I was yelling and begging her to come back. Parents also used words such as surreal(n=6) to describe their emotional experience. Other terms reflecting depersonalization were mentioned (n=5) and included in a daze and like watching someone else go through it. Other expressed emotions related specifically to the service were overwhelmed, Horrible, feelings of internal explosion. For those parents who were, for whatever reason, uninvolved in the funeral/ memorial, there were wishes that they had been more in control and involved. For the few that did not have a service, reflections on the loss of validation that their child was real or alive and feelings of guilt and regret there was not a formal service were pervasive. Additionally, respondents indicated that they did not know

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RITUALIZATION AFTER A CHILDS DEATH what to do and wished that someone in authority would have guided them in their decision making process.

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Social support during periods of ritualization was a feature that many participants spoke of in their interviews. Many individuals had others in the room with them during the acute period after the death, and some commented that they wished that they had more time alone with their child. Parents with surviving children also described the struggle to deciding whether or not to allow siblings an opportunity to participate in the rituals. For one participant (P15), her children were very involved, but for two others (P 17 and 18), there were reflections of regret. I thought it was best for the other children to not see their sibling. Additionally, she reflected that one sibling, a daughter, still begrudges me that they were not a part of the experience (P17). A major recurring theme emerged with regards to how the parents were treated by medical staff in the immediate hours after death. Many parents reflected on feeling rushed in their farewell rituals by various members of the hospital and/or funeral home employees (n=8). For me, I needed to hold and cradle her there were many people there and I didnt get time alone. I wish I had more time alone with her. I felt kind of rushed. (P8) Another stated, The nurses came in and tried to demand that I leave because the police needed to take the body as evidence. I told them that I would leave when I was ready to leave him. (P1). A particularly poignant comment was made by one participant Here we were at the absolute worst time in our lives and they wouldnt listen to us (P18). Participant 2 reflected that the funeral home staff member was more like a used car salesman. So many expressions of betrayal and violation were mentioned in the discourse (n= 33) that a separate analysis will be undertaken to evaluate parents experiences with providers.

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RITUALIZATION AFTER A CHILDS DEATH Out of the 19 respondents, ten had a funeral and/or memorial service for their child. One mother said this was one of the last mothering things she could do for her child and, for this reason, the structure of the service was very important. Many of the respondents reported that they felt a need to take control over the service to ensure the tribute to their child was

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meaningful (n=10). Only three responses reflected the opposite, that is, a failure to take control of the service, and each parent who did not have some type of control over the services expressed regret. For those individuals who had an organized service, many began their rituals at the time of burial by placing notes, photographs, stuffed toys, and other personal items in the casket. Throughout all the transcripts it was evident that postmortem ritualization was perceived as significant for parents bereavement processes. There were 51 comments about personal mementos that parents kept ranging from hospital wristbands, cards and flowers to handprints/ footprints and locks of hair. In an effort to remain connected with their child, even the trauma of around the death, one family saved the cell phone bill documenting their time from arrival at the hospital to departure. Universally, having these tangible artifacts was identified by the parents as positive, but often by others, in particular family members, as negative.

Parents also seem to use rituals as a means of immortality, so that their child can live on and be remembered, both privately and publically. Ninety-five comments were made about specific activities that participants undertake to memorialize their children. Most of the parents experienced a public to private trajectory. That is, during the first few months following the childs death, the ritualization tended toward being more public and involved surviving children, parents, relatives, and friends. Over time, however, rituals became much more private, primarily because of the influence of others. One participant shared that his mother was a social worker

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RITUALIZATION AFTER A CHILDS DEATH and she didnt know what to do with us, and another stated that, Theres never been a history of remembering our dead relatives, and Im not open about it because they arent.

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While the more traditional rituals were often discussed in the stories of participants, many more of the participants engaged in new, less-traditionally recognized rituals. Overall, nontraditional rituals were mentioned more than 50 times, and included creative acts of memorialization such as: memorial Build-A-Bears, scrapbooks, memorial websites, making and wearing memorial jewelry, automobile memorials, personalized Christmas cards and memorial ornaments, balloon releases, volunteering and participating in random acts of kindness, and memorial tattoos. Parents in this study reflected on the importance of helping others in a multitude of different ways that may not, at first glance, seem like an actual ritual. For example, attending a support group felt, to some, like a ritualistic act that benefited them at first. However, as time passed attended groups became a way to give back to other families who were suffering the same loss as they had (n=12). The use of their personal stories to help other families and, ultimately, to give them hope was a recurrent theme. Additionally, other families engage in acts of altruism, including purchasing gifts on holidays for a less fortunate child. One respondent stated, After I do an act of kindness, I feel closer to him and a sense of relief from the intensity of the grief [that] comes over me (P2). Every participant in the study stated that rituals were profoundly important to them, reducible into three main categories represented: 1) continued bonds with the child who died, 2) coping, and 3) honoring and memorializing. Despite the importance of ritual in the lived experiences of the participants, there were some perceived negative aspects related to the responses of others. While two respondents stated that there did not experience discouraging

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RITUALIZATION AFTER A CHILDS DEATH feedback, most others in the sample conveyed less-than-supportive responses, often from family members. In total, there were 51 disaffirming responses, such as the suggestion that

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parents should just move on and assertions that a mother was no longer a mother if her only child had died. While some participants interpreted these negative comments as intentionally hurtful, meant to interrupt their ritualization/ memorialization, others felt more empathy for those who they felt could not understand: They didnt know what to do, so they did nothing. (P17) Additionally, for some the omission of acknowledgement appeared equally as hurtful to the bereaved parents as suggestions they stop acknowledging the child after an arbitrary period of time (usually following first holiday or first birthday). They dont know if they should or shouldnt talk about it. The fact that people dont know what to do or worse suggest I shouldnt feel pain or grief. (P18) This did seem to affect many parents comfortableness around ongoing ritual, and may be why some became more private. In general, parents who experienced perinatal death had more negative responses from others. Private or public

Parents do seem, over time, to become more private in the ritualization of their child, at least in part, due to questioning or criticizing from others. One father reflected they have become much more private because of how society views her- its easier for me and out family to have more private memorializing. It avoids invalidating responses. Most everyone doesnt acknowledge [her] and I dont want her memory tarnished. (P18) They seemed to gravitate, at some point, away from those they feel dont understand their grief, and toward other bereaved parents. Many parents noted that they discovered new opportunities to ritualize from other

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RITUALIZATION AFTER A CHILDS DEATH bereaved parents in support groups (n=11) and felt the group normalized their feelings and provided them with mentorship from others who understand. DISCUSSION

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The results of this study reveal three salient themes which bereaved parents cite as motivation for ritual: 1) maintain a sense continuing bonds with their child, 2) help them cope by offering a sense of control and power, and 3) provide a means toward posttraumatic growth through the opportunity to honor and memorialize the child. These factors, in turn, appear to mediate grief through meaning reconstruction in the aftermath of the childs life and death within the context of

social and cultural influences.

The enduring psychological presence and physical absence after child death incite high ambiguity and thus high levels stress for bereaved parents (Boss, 1999; Cacciatore, DeFrain, & Jones, 2008). The sense of continuing bonds that is born of rituals, as described by parents in this study, seems to reaffirm a type of psychological proximity, wherein the deceased continues to be recognized as a beloved family member. Bereaved parents often experience a sense of vulnerability and shattered world assumptions- after the untimely death of a child (Rubin, et al, 2003; Green, 2000; Janoff-Bulman, 1992), leaving them feeling helpless and out of control (Cote-Arsenault, 2003). Rituals also seem to mitigate that sense of powerlessness, giving bereaved parents control over their very personal and painful losses. Parents in this study, consistent with constructivist theory, seem to use rituals to reorganize, reorient, and construct a new micronarrative that fits in the social context of the macro-narrative, both during acute and later phases of mourning. Many parents are, indeed, influenced to

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RITUALIZATION AFTER A CHILDS DEATH participate in ritual by through social venues such as support groups and communion with

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other bereaved parents (Umphrey & Cacciatore, 2011). Here they are able to recreate the childs biographical sketch (Walter, 1996). However, they may also be influenced away from ritual from others who may misunderstand how they feel or why they feel compelled to continue bonds in this way. As a result of feedback from others, many parents in this study chose to move their mourning ritual from the public to the private, citing others intolerance of their enduring grief as the reason. These findings support Walters (1991) assertion that death is not forbidden; rather, it is hidden because of the intense personal pain, so intense that others are unwilling to share it

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(p. 306).

Yet, mourning rituals are a language of emotional expression that may aid bereaved parents to maintain a sense of control, reconstruct meaning, and develop an infrastructure to cope with their loss. Whatever the ritual itself is, it must be meaningful to the participant, allowing them to add new meaning to the experience and/or reconstruct prior meanings in light of the profound circumstances in which they now find themselves. The use of symbols, such as tangible objects, words or movements creates individualized meaning for each participant, ultimately facilitating their journey through grief (Kobler, Limbo, & Kavanaugh, 2007, p. 291). The participants of this study seemed to appreciate both traditional and non-traditional ritual, perhaps a clarion call for clinicians to expand their definition and understanding of ritual to include symbol, story, and ceremony (Combs & Freedman, 1990). Implications for Practice While a broad definition of rituals includes group identification, collective expressions, shared stories and secrets, and a sense of control (Kastenbaum, 2004), it is critical for clinicians

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RITUALIZATION AFTER A CHILDS DEATH to expand the parameters for rituals and seek creative ways in which to engage clients experiencing child death in these ways: 1) Metaphor and symbol: Something that stands for

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something else and that can evolve in meaning over time, and the use of words as representations of experience and associations, 2) Stories: The substrate within which several discrete symbols are embedded and interrelated, and 3) Ceremony: New patterns, actions, and intentional experiences that are symbolic. Even psychotherapy itself can be a ceremony, emphasizing exploration, awareness, and transformation through the use of symbols and stories (Combs & Freedman, 1990, p. 14). Certainly, the parents in this study seemed to experience varying degrees of posttraumatic growth by honoring their child through day-to-day kindness toward others and volunteerism.

As the results of this study suggest, parents are influenced by others when it comes to ritual. Providers play an important role in facilitating death rituals from the acute crisis to long-term mental health services. Importantly, there are profound implications which result from failing to use ritual therapeutically in the final moments before and after death. Encouraging death rituals early in the grief process facilitates the capturing of important memories and mementos, and may help parents by minimizing regret. Parents often look to providers for guidance or advice, wondering if, for example, holding a five-year-old who died is culturally appropriate. Kobler and Kavanaugh (2007) reflect the importance of initiating a discussion about ritual, while considering the timing of the ritual as critical elements for staff as they care for bereaved families. The reality of time constraints, patient acuity, and staff shortages require a precise, focused method of learning what is important and what is meaningful to another person, the entire basis of a

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RITUALIZATION AFTER A CHILDS DEATH therapeutic relationship (p. 293). To this end, the concept of guided participation is of particular salience.

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Workman (2002) cites guided participation as one way to approach bereaved families about rituals. Just as their telling of the story is important to the bereaved, so too are the gentle information-seeking questions of supportive providers. In the asking of questions, however, there must be an acknowledgement that providers will be required to develop innovative approaches to common therapeutic protocols or policies (Kobler & Kavanaugh, 2007). Comprehensive training on how to deal with the bereaved individual or family within the very specific context of perinatal death is crucial, particularly given the sparse opportunities for rituals, such a memento photographs, with a baby they never brought home (Cacciatore, 2009; Cacciatore, Schnebly, &

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Froen, 2009).

Both administrators and providers are in a unique position to advocate for comprehensive continuing education for staff, changing the infrastructure for handling child deaths, if necessary. Bereavement programs, including mental health agencies, should focus on effective and culturally competent communication skills for all staff including those who work in intake and, pastoral care, interns and residents, and even non-clinical staff. The opportunity to co-create ritual throughout the therapeutic experience allows for transformation of even the typical into a meaning-making experience (Kobler, et al, 2007). Additionally, parents may continue to benefit from ritual as a way toward the reconstruction of both identity and meaning and to foster continuing bonds despite the number of years that have passed since the childs death. Mental health providers are in a unique position to mindfully shepherd parents through this process, even years later.

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RITUALIZATION AFTER A CHILDS DEATH Limitations

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As with any qualitative study, there are limitations to the generalizability of the data because each narrative reflects a very personal story, unique to each individual or couple. Although the essence of the lived experience of each story is unique, shared perceptions and themes were clear within the narratives. The low number of participants, minimal variability in socioeconomic status, education, and ethnic representation also compromises generalizability. Additionally, all participants were involved in a support group at the time of the interview, thus, results may not be extrapolated to bereaved parents who have never attended a support group. Despite these limitations, there is much to be learned from these data. A phenomenological history is built on each individual story, of which 19 are presented in this study.

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CONCLUSION

There is a need for clinicians and academics to expand their definition, understanding, and practice of ritual to include stories and metaphors, symbols, and ceremonies (Combs & Freedman, 1990). Well-trained providers can work within community and family systems to facilitate culturally sensitive rituals that help grieving parents, siblings, and grandparents cope. These rituals can be traditional or non-traditional, formal, or ceremonial acts or procedures that transform the banality of the everyday, from the ordinary to the sacred. Rituals help the bereaved regain some sense of control of their very intimate process of grieving, and they are intended to be deeply felt by the mourners and others. These rituals compel others to experience and share the suffering of the grieving family because of their essentially kinesthetic materiality and their particular embodiment of grief (Scott, 1991, p. 779). Indeed, the passage from life to death

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RITUALIZATION AFTER A CHILDS DEATH and from death to life has long inspired rituals worldwide as a hedge against terror and despair (Kastenbaum, 2004, p. 99).

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