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Bs<)F~E@!(G|GVeY`>෵nO|@%.1q$@o!%zCCo&JH_?T}-Bs*?׺[8bGU_]/0k1"Z/bO_Q;Kv4F'cǶ~]h :m:^c|?8NhW6Eئ |؎_kP>>*&_UO0?M|Jբ!RvgzfE={ODcv0koDy9¼!6f?/ӵ%AC?lW|x~+~'˵e~M8V%[zi1_tǸ<ǩ#6=Du`C4梞Sfsh#S7:tDhN|Qcm_~[vK\n/ ^g;D˾̷qY窉Yw_4}Z9J9;`9@yܱ}d]ϓ%}௚%T.JdBkT&Z'.`t/aZmjzi8t?qYao~yKE0]. \=;-mkKݯ0/ߔ2U~ʏr%j}KXHGfu+AdE``.{Xűz.'p,~LǢζXG|Ӷ/W A\1S]<4/6GcO97\_KN?ћy{n3s[yklْxOP gh9ؘsa?AXj>&Vl7-mKay5\=y+/$y+uޱ?J7yJh?W}Ը/U>B_k/s'\>?x,}΄ \ZLArticles & Aids: D Kirkley-Best, E. & Keliner, K.R. The Forgotten Grief: A Review of the Psychology of Stillbirth. American Journal of Orthopsychiatry, 1982 D Kirkley-Best, E. & Kellner, K.R. Grief at Stillbirth: An Annotated Bibliography. Birth & the Family Journal, 1981. Kirkley-Best E. Bibliography, 1920-1986; UPDATES: ‘86-Current [From www.forcjottencjrief.com] Kirkley-Best, E. Advice on In-Hospital Care for Bereaved Parents: [From www.forgottengrief.com] Website: The Forgotten Grief: Counseling Parents Experiencing Perinatal Death: http://www.forcjottencjrief.com D I. Description and Processes of Perinatal Grief -Prenatal Maternal Attachment -Perinatal Grief: Processes and Descriptions D II. Variables Affecting Perinatal Grief D -Choices and Circumstances in Perinatal Death D -Cremation, Burial and Memorial Services III. Morbid Grief Reactions to Perinatal Death Handout: Morbid Grief Reactions IV.Counseling Parents Experiencing Perinatal Death D -Procedures for In-Hospital Intervention D -On Not Knowing What to Say: Guidelines for the Professional D -Unhelpful Remarks D -suggestions for Counseling some time after the Death D -Fathers, Grandparents and Siblings: More questions than suggestions. V. Perinatal Death: The Parents Experience Videotapes [Workshop Only] Dr. Elizabeth Kirkley Best Elizabeth.best@gmail.com forgottengrief@gmail.com Web Director: the Forgotten Grief xXmlSU~o;uDBX#@L D HA#?) 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These are: D 1) shock and numbness, in which there is a lack of overt reaction; D 2) searching and yearning, in which a person physically and perceptually searches for the lost person either consciously or unconsciously in a painful but futile attempt to recover the lost person; D 3) disorganization, characterized by a general depression with increased affirmation of the loss; and D 4) reorientation, in which a bereaved person begins to restructure his life and return to a level of functioning at least equal to the preloss period. While each process best characterizes the grieving person at a particular time, all may be present simultaneously. it is important to remember that grief is a very individual experience. While it is proposed that the above- mentioned processes best describe human grief, it should also be stressed that each of the processes of mourning will be experienced differently by different persons. Still, the Bowiby-Parkes formulations serve as a useful framework for understanding parental grief at stillbirth. Shock and Numbness Upon the death of the child, most mothers experience at least some degree of disbelief. There is a tendency to believe that somehow a mistake has been made and the infant is still revivable (Cullberg 1971; Taylor and Hall 1977; Scupholme 1978). This phase is usually brief whereupon the intense pain of yearning and searching begins. Yearning and Searching When most researchers discuss acute grief, they are focusing on the painful, fruitless searching and yearning for the dead person. As Klaus and Kennel] (1976), Jolly (1976), and Davidson (1977, 1979) have noted, the yearning and searching is compounded in stillbirth mothers by the nature of the situation. The expectations of mothers and fathers are of an idealized infant, created from their hopes and dreams. While all parents suffer some discrepancy between the ideal infant and their real infant, these discrepancies are usually not too difficult to reconcile in a normal outcome. Stillbirth parents, however, suffer the worst discrepancy--not only is their real infant obviously different from their ideal infant, but death, one of lifes greatest sorrows has occurred at precisely the moment in which the opposite, joy at birth,was expected. Furthermore, pregnancy as a life crisis (Bibring et al. 1961) takes place over a relatively short time thereby focusing the attention of family and friends on the event of the birth. The sudden horror of the death is felt by all who attend it. At the time when a mother may most want to hold her infant, there is no infant to hold, and yearning of grief is painfully compounded. The untimeliness and sense of utter injustice are as strong as with neonatal death. 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These include preoccupation with the image of thoughts of the deceased, anger and reproach, guilt, despair, sleep disorders, appetite disorders, pangs of grief, somatic distress, depressions, hallucinations and illusions of the presence of the deceased (Kennell, Slyter and Klaus 1970; Wolff, Nielson and Schiller 1970; Cullberg 1971; Klaus Kennell 1976; Davidson 1977, 1979; Kennell and Trause 1978). In the months that follow the babys death, certain aspects of the yearning-searching phase may be so pronounced as to cause problems in later adjustment. Anger, reproach, and guilt play a particular role in this type of loss. Wolff et al. (1970) noted that of 50 mothers, 17 blamed themselves for the death, 10 blamed God, and 9 blamed others doctors and husbands in particular (14 voiced no opinion). This anger and blame is intensified by the fact that in approximately 70 of stillbirths, no discrete cause of death can be discerned (Donnelly 1979). The guilt involved can be overwhelming, as the mother goes meticulously over the events of her pregnancy, trying to discover any etiological factors. Failing this, she may turn her feeling outward. Anger and guilt, then, while normal components of grieving, may be particularly pronounced in parents of stillbirths. Parents who did not see or hold their baby may have particular difficulty in the phase of yearning and searching. When there is no clear perception of the baby, the searching may go on endlessly, for it cannot be mitigated by defensive processes. Women may report hearing phantom crying when no infant is around (Davidson 1979). Mothers have told the authors that they still feel the baby move even after its birth. It is also normal for women to feel jealousy at babies of others. Disorganization While the processes of shock and numbness and searching and yearning seem best to characterize the early months of mourning, the latter half of the first year of bereavement may be characterized as a period of disorganization. Most of the work with stillbirth mothers has focused on the period when the woman is in the hospital and the first two or three months when she returns to her doctor, so little has been said about this later period of the grieving process. Davidson (1979) has explicitly addressed this period of disorganization and depression in stillbirth mothers. A mothers intense grieving gives way to feelings of depression, devaluing of self worth, and apathy. These characteristics have also been noted by Cullberg (1971). Reorientation Reorganization indicates that a mother has adequately resumed her place in society with minimal discomfort to her. The first step towards reorganization for many women seems to be the point at which they are able to settle the affairs of the lost infant, to dismantle the nursery, with tears perhaps, but not great anguish. No parent severs the tie completely with the stillborn son or daughter, but a time arrives in which attention may be focused on the living. A complete resolution means she may decide to become pregnant again, not to Jx{lu[/ S]ǰk  pp 0tL -E!\$A$1?Vuk!h" 1Ƙc9}e(p;9< а"0N/n)! !!dg:3C9%lz ґ&&k۞_pjS# 76Tݍ{_V61{7S9y0Y~w]:'i)Ifa誁k3:eY rX@wwY}G8* 4 m@NO_*m]CK.R K2'o*ppw^6?>|Ȇʟ%8]_r苀sh s-%^~ u/N-찙Xâ>c^JVRW7Bw |J|+wG|C C> ^?oB? 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These statements are true for most patterns of mourning a stillborn child. However, because of the nature of the death, and lack of societal support for the grief of these parents, severe problems may ensue leading not to reorganization but pathologic variants of grief. Pathological Variants of Perinatal Grief It has been observed that families of stillbirths are at risk for pathological (Helmrath and Steinitz 1978; Lewis 1979) outcomes. These have been empirically studied only in mothers. Pathological outcomes may be divided into two categories: chronic intense grieving, and absent or delayed grieving. Chronic Grief The most typical presentation of chronic grief is depression. Jensen and Zahourek (1972) found 6 out of 10 patients followed at intervals throughout the first year of bereavement were significantly depressed. Cullberg, in a study of 56 Swedish women experiencing stillbirth, found a variety of serious psychological symptoms in 19 of the women one to two years after their babys death. These symptoms included 9 reports of anxiety attacks, 3 severe phobias (e.g., cancer or death), 3 deep depressions, 2 cases of obsessive thought and 2 cases involving psychotic reactions (Cullberg 1971). Other authors have likewise noted an increased risk for serious psychological problems in stillbirth mothers (Giles 1970; Lewis 1971; Davidson 1979). Delayed or Absent Grief Perhaps a more dangerous risk and also one that is more difficult to detect is the effect of grief which is pushed aside because it is too difficult with which to deal. This is the case of absent or delayed grief. Cullberg (1971) found that women who demonstrated a suppression of feelings about the stillbirth showed more prolonged psychological symptomatology than those who expressed their feelings. Perhaps the most common variant of delayed or absent grief which occurs in stillbirth mothers is the rush into another pregnancy, usually within a year of the loss. Cain and Cain (1962) described a replacement child syndrome occurring in reaction to any bereavement a mother might experience. Mothers frequently have been encouraged to become pregnant in order to forget the loss by becoming busy with another child. The problems in both mothers and children are painfully evident: the mother never having worked out her original grief, searches for her lost child and finds him or her in the replacement child. The replacement child, however, is constantly compared with the idealized deceased child and therefore lives in the shadow of the dead child, often incapacitated by death phobias and fears of abandonment. Sometimes replacement children are held responsible for their siblings death and live in a hostile-dependent environment with their parents. In any case, becoming pregnant to resolve a loss appears to be a pseudo- resolution detrimental to all parties involved. 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Z"c|OG:6l?3nb_oUb#xtEne<  cؚ< xP'ɓC|+<7|C;:bZe~r'|tӡ7pmpdz?ѓ>Jah/[3r+ܐ\0wyog3{.̌mo6[|sggLl=O߫r]=ˣUud<}uJ>{=fhyK2{=ShސŻ[eS>2lƻhel9ZVyh#_[.Is RǗ.14x$Bإ\ƒ6VGd?yh26GdåND66Rw\CKGh{M|.s=6EN/-Ǟ^6\Vsyq戛)]搂myLo8/~tkվjoZΛkw?XNyjwvOc}*TsNmb{^^{\-o{Ev$vG7`xK_=VQݱAp^/4^(Wa |`wn\[߇|hʷv+!_ڽU{B26+ϜneQm pX;eݜ`/ g|I ƧO7XҎ ȉN}t >FFi«lrR%ozñ}\m#яU*O,sS;m7 ?]zuZۣ\Q[ -}پϔn_81]-Jv4_{-G`|Z>~n\ \/)GXS_{t*j4dE+\tDNJ?K_[I.Vɦ4lHnE> \> ,ةW%yG<چqW%_֋脏^/x,4_':bsљgG.||M{ёꛏr֪_YT6\v i_ly ==Z޼yyKpdZd>Q8+͑2erhLsu_w{WԴ*ɾeD_༡NV#sϣh8 ~NR+Mß9)`XK;N޽UyEF_!Fp&cbWWUL}&7snBsWU}m~|U_Y5n j7?^wVl&ۘcVO6G vSV4?_dW6ӷ5=hOmmiUNX^<1ڞQΞNۻrpEի6\[Dm, >e\^ɘr&p^ÅS>ҕǥunqv \}mNlʦĢeͿy}A/d23YDYvZmQ1/_p˫P?{&"F͉isjp1EZd^O| -X%tW3l}\?XYċ>#+.Kxeb>k:vUv-cMpW;Um-ovylhAo.ndBNv,gvru6e zO|nܮn,c;ߩG?%&/^tpy/fx%EGq%#G^3;'6џvdIp^ئF ~W<ؕƏl!#\ޫUruFy`µ7F\LhX]/>-t]'vGΕÓ6:,sYz^*S[/Vk#ezYI3-d#G]{Ш/٦MT٫rsE_^ \/-X-w[s}ͱ%>aB}rZꃣXn[ɟ$iMqkse"{(VߺfhH:{ [XKGί}Z;7 _-X|)mbZtY} /6R7> Ol׎^'j>,F Spr{89p@/`d>x^P9@zqgNlʦ`,M'YY!v^m_,T|#Mv;l;jEnGw%˘" a#3zyɳNz`<{s{=7{ f߿-ϟ*5b~+{lܳ/8xAm-n=h̬kjc?JQ!o9 GvO W/VrJnY'ܖ[άf*GkbÌE{dM nicbil|c56>w?|`fUŐlq7əy1e=3=ީ?z-;кg;{@2}z然çO7vh'2wC& oxvh3ȈLEMxC/ȏD/#??ڛ,2"yѣFcNILrxJ>oOp}~` [egd)Ói~$n(݊7m>m]ԯ"=kYvM|l4$~S9_ :E?~GMdi3gOF/]]QE'?ؗGBb} =G&/=Lm~ ?>0%߾] >_dlfrequently than in any other case. Kennell and Trause (1978) basing their opinions on the psychoanalytic (but non-empirical) work of Deutsch have claimed that a woman loses part of herself in childbirth. While they do not recommend that women rush into pregnancy, they claim that the reason so many women do is out of a need for wish-fulfillment to have a baby. However, it is more commonly observed that parents of stillbirths mourn for the particular baby they lose, not just for the wish of a child. As for losing a part of ones self, this is a feature of all bereavements and is not peculiar to Perinatal loss. There are other problems involved when a family fails to mourn a stillborn child. Emmanuel Lewis (1971, 1979) has described how siblings of stillbirths often become involved in destructive fantasies, especially when the mother acts with the irrational hostility of grief. Lewis and Page (1978) describe a case in which a woman became pregnant shortly after experiencing a stillbirth and subsequently was: unable to care for her new infant. Perhaps the best evidence of detrimental effects of delaying grief by becoming pregnant comes from the work of Rowe and associates (1978). They found that in a sample of 26 stillbirth mothers followed between 12 and 20 months, the only predictor of morbid grief reactions was the presence of a surviving twin or subsequent pregnancy within 5 months of the loss. Jolly (1976) has likewise warned against the attempt to replace the dead infant with another child. Both Jolly and Lewis (1971) have also noted problems with anxiety in subsequent pregnancies. While Wolff et al. (1970) have suggested that the decision to become pregnant quickly was an individual matter that the physician should not try to influence, the existing evidence suggests replacement pregnancies may have severe consequences. A mother and her family can develop any pathological variant of grief which may develop as a result of any bereavement. What has been described here are particularly evident patterns. Those who are interested in additional information on the outcomes of mourning and their predictors are referred to the works of Bowiby (1979) and Parkes (1975). Conditions and Treatment in Stillbirth Bereavement The conditions surrounding parents and treatment which parents receive, especially in the hospital, are believed to have a significant effect on how they will eventually resolve their grief. Cohen and associates (1978) have described crisis intervention with stillbirth parents as assisting parental affirmation. This process of affirmation is what Parkes (1972) has called realization. The parents of a stillborn child probably have one of the hardest times of any bereaved adult dealing with the reality of the death and the permanence of changed expectations which it entails. The inability to fully realize death and accept the consequences is believed to predispose bereaved persons to pathological outcomes (Bowlby 1961, 1979). In the parents of a stillbirth, there are several conditions which may affect this affirmation process. They may include the reaction of others to the stillbirth (especially doctors, nurses, and families), whether or not the mother or father saw or held their infant, whether a funeral or memorial service was held, whether autopsy results are received, whether siblings or close subsequent pregnancies are involved (discussed previously), previous losses, whether or not they receive appropriate crisis intervention and information concerning the grieving process, and lastly gestational age. 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Until recently, society expected that a young mother would not grieve for a stillbirth, and doctors and nurses shared this attitude. It was not uncommon to hear the comment, Dont worry, you can have other children, immediately after the delivery. Doctors, nurses, and families, being as uncomfortable with grief as anyone else, would avoid all mention of the death making it into what has been called a nonevent (Lancet 1977). Mothers were almost never allowed to see their infants for fear they would be unduly upset, as if they were not already. The attitudes of hospital staff are changing, but very slowly (Kowaiski and Bowes 1976; Helmrath and Steinitz 1978; Rowe et al. 1978). In 1971, Bourne conducted a study on the Psychological effects of stillbirth on the doctor. He sent out questionnaires to 100 randomly selected doctors of mothers who had experienced stillbirth and 100 doctors of mothers who had live births in order to look at differences in reactions between the groups and differing doctor-patient relationships. This report was startling, for the doctors reported no differences in the maternal reactions to stillbirths or live births or in anxiety levels between the two groups of mothers in subsequent pregnancies. Bourne concluded that doctors had either neglected real differences or could not deal with the grief at stillbirth. Significantly more stillbirth doctors than live birth doctors did not return the questionnaire, and among those stillbirth doctors, who did, significantly fewer questions were answered at all; most responses were reported as dont know. He concluded that doctors were subject to inordinate stress and patients were in danger of neglect when a stillbirth occurred (Bourne 1971). Corroborative evidence has been given by Wolff and his colleagues (1970) in a longitudinal study of stillbirth mothers. They found that over 50 of mothers perceived doctors as cold or indifferent to them during their bereavement. Over 60 of the mothers rated nurses as cold or indifferent. Rowe et al. (1978) had similar findings; 602 of stillbirth mothers felt dissatisfied with the information offered them about the death and the manner in which the information was given. While staff members may have a detrimental influence on the mothers well-being, they may also have a facilitating effect on the grieving process with supportive intervention. Rowe et al. (1978) found that stillbirth mothers who had follow-up were considerably more satisfied with their treatment. Schreiner, Gresham, and Green (1979) found tha t a simple, caring, phone call from a physician accounted for a reduction in reports of major problems in the intervention group when compared with stillbirth mothers who had received no phone call. The nursing literature is likewise replete with examples of how nursing responses may greatly facilitate the grieving process (Settz and Warrick 1974; Saylor 1977 ODonohue 1978). Queenan (1978) has remarked that the help one can be to the family of a stillborn child is often underestimated and he encourages both doctors and nurses to play a central role in the support of these parents. One of the most controversial issues is whether or not the mother should see or hold the baby. Yet, in the literature, there is almost unanimous agreement that seeing and holding the infant is a helpful factor in successful grief resolution (Kowalski and Bowes 1976; Klaus Kennell 1976; Tizard 1976; Cohen et al. 1978; Saylor 1977; Kennell and Trause 1978; Scupholme 1978; Lewis 1979; Davidson 1979). The only research widely known which has touched on the effects of seeing the baby was by Kennell et al. (1970).in which seeing the infant was associated with full expression of grief. 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This may indicate that mothers who hold their infants are more willing to deal with the painful reality of the death and treat it as they might the death of an older person, or it may mean that holding the infant emphasizes the reality to mothers, facilitating more beneficial grieving processes. Further work is needed to define these affects. In general though, holding and seeing the infant seem beneficial. When a mother cannot or has not seen her stillborn infant, artifacts such as footprints, photographs, and apparel become critically important to the mother. These have likewise been observed to have beneficial effects (Klaus and Kennell 1976; Davidson 1979). The same authors, cited previously, who encourage parents to see their stillbirths also note the positive effect of an autopsy. According to Queenan (1978), Cohen et al. (1978), and Kellner and associates (1981), the autopsy seems to allay guilt and anxiety in parents of stillborns. Even when no definite cause of death is found emphasis on the babys normality seems to alleviate a great deal of parental concern. A caring explanation of the results serves to increase communication and trust between parents and their doctors. These effects have yet to be studied in depth. Intervention Programs In the last few years, a variety of intervention programs have arisen to offer support and information to families experiencing stillbirth. Most of these programs include in-hospital visits and follow-up of parents at regular intervals. Some intervention programs are run by parents of stillbirths themselves (such as PEND, Parents Experiencing Neonatal Death, Klaus 1980) and some are individuals (e.g., psychiatric nurses). Still others are bereavement teams (such as the Perinatal Mortality Counseling Program at Shands Hospital in Gainesville, Florida; Kellner, Kirkley-Best, Chesborough, Donnelly, and Greene 1981). Most programs involve the same sort of treatment--a mother is supported and encouraged to express her feelings, she is offered full options in regard to her infant (seeing the baby, photographs, etc.) and she is followed up throughout her bereavement period. (For a full description of procedures, see Kellner et al. 1981). These programs seem to have a beneficial effect on the grief of families involved. Further research may lead us to the most appropriate methods of crisis intervention. The gestational age of the infant as a factor in perinatal grieving has never been systematically explored. Almost all of the research which has been conducted in the area of perinatal grief has been with women losing an infant in the third trimester of pregnancy or the first weeks of life (Kennell et al. 1970; Cullberg 1971; Rowe et al. 1978). Jolly (1976) has indicated that parents losing a one pound infant should receive the same regard as those losing full-term babies, but has not specifically observed how early grieving responses occur. One may get some idea that they occur very early based on scattered reports from different disciplines which have found that grieving responses occur towards early fetal death in adolescents (Horowitz 1978) and in an adult sample undergoing second trimester abortion (Pasnau and Farash 1977). 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