Guidelines for health care professionals supporting families experiencing a perinatal loss

Abstract

“Bereaved parents never forget the understanding, respect, and genuine warmth they received from caregivers, which can become as lasting and important as any other memories of their lost pregnancy or their baby’s brief life.” [1] Despite the lack of evidence from randomized trials that providing specific psychological support or counselling after perinatal death has any effect on the prevention of pathological grieving or long term psychosocial morbidity [2], an empathetic, caring environment that facilitates a mother’s and family’s acceptance of the reality of death are now part of standard perinatal care and support [3]. This statement provides insights into the phases, and processes of grieving and mourning, especially the unique aspects of pregnancy loss and neonatal death. Based on descriptive studies and common sense practice, general guidelines for caregivers are provided, with more specific suggestions for special conditions. Two categories of loss exist: physical and symbolic losses. A physical loss is the loss of something tangible, and often others recognize physical losses. In contrast, a symbolic loss is the loss of something intangible (divorce, retirement, the development of chronic illness, shattered dreams), which is seldom recognized by others as a loss generating feelings that require processing [4]. Grief refers to the process of experiencing psychological, behavioural, social and physical reactions to loss. It is a continuing process involving many changes over time. It is a natural reaction, and its absence may be abnormal and indicative of pathology. It is a reaction to all types of loss, not just death, and it is dependent on an individual’s unique perception of loss and does not need social recognition or validation by others (ie, it is the specific subjective feeling that accompanies a loss) [4],[5]. Mourning is the cultural and/or public display of grief through one’s behaviour. It is the process through which the resolution of grief may be accomplished. Bereavement is the entire process precipitated by the loss of a loved one through death [5]. Avoidance or protest covers the period during which the news of death is initially received and the time briefly thereafter. Generally, it lasts for a few hours to several days. It is marked by the understandable desire to avoid the terrible acknowledgement that a loved one is lost, and by a desperate and frantic attempt to reinstitute the relationship with the lost person. Anger and hostility frequently are present during the initial phase of mourning, and may be directed at health care workers or toward oneself, specifically for having failed to do something to avert the loss [4],[5]. The phase of confrontation and disorganization is a time when grief is experienced most intensely, and reactions to the loss are most acute; it introduces awareness of finality. This is a painful, internal phase when the mourner confronts the reality of the loss and gradually absorbs its meaning. The most characteristic feature of this phase is preoccupation with thoughts of the deceased while the mourner relives his or her relationship with the lost one. These memories are intrusive and painful, but they constitute the necessary grief work that eventually helps the mourner to relinquish the important attachment [4]–[6]. During the accommodation and reorganization phase, there is a gradual decline in the symptoms of acute grief, and the beginning of social and emotional reinvestment in the world. The deceased or the loss is not forgotten, but the mourner learns to live with the cognizance of the death and its implications in a way that does not preclude a healthy, life-affirming growth. This process, which extends for at least one to two years, indicates the completion of mourning because the person enjoys life again and begins looking toward the future [4],[5]. The death of an infant is a profound loss, and it is important and advantageous to acknowledge families’ appropriate need to grieve for their babies. The death of a baby is especially difficult to endure because parents envision an entire lifetime for their baby from the moment of the confirmation of the pregnancy, and because their expectations and vision have been built over time (Table 1). With the death of their baby, parents lose an entire future. Parents also grieve for the loss of their own parenthood [7]. Kowalski [8] states that perinatal death represents multiple losses to parents, including the loss of a significant person, the loss of some aspect of the self, the loss of external objects, the loss of a stage of life, the loss of a dream and the loss of creation. Culturally, a couple whose first pregnancy ends in a loss has not completed the rite of passage into parenthood, which symbolizes adult status [9]. Psychological process of becoming a parent Feelings of procreativity and generativity A sense of continuity through the generations Fears and expectations about the coming baby Effect on expectant parents' relationship Response to quickening and bodily changes Attachment to real and idealized aspects of the infant Self-esteem building Reprinted with permission from Kay J, Roman B, Schulte HM. Pregnancy loss and the grief process. In: Woods JR, Woods JLE, eds. Loss During Pregnancy or in the Newborn Period. Pitman, NJ: Jannetti Publications, Inc, 1997:5–36 The loss of a child is a high risk variable for the development of complicated grieving. It has been documented that, compared with other types of bereavement, parental grieving is particularly intense, complicated and long lasting, with major and unparallelled symptom fluctuations over time [10]. In general, the age of a child is irrelevant in this type of bereavement. Many similar feelings are present for bereaved parents whether the child is two days old, two years old or 22 years old [11]. Many issues centre around the loss of the person who fulfilled a child’s role for the parents. Regardless of the child’s age, parents have lost their hopes, dreams and expectations for the child. They have lost parts of themselves, each other, their family and their future. Their assumptive worlds have been violated [11]. One has to keep in mind that grief is different for different people. This also applies to both partners of a couple. Often, they cannot synchronize their grieving processes, and this may be a source of interpersonal stress. There is no absolute systematic progression or pattern for every person’s response to a baby’s death because grief for each individual is intrinsically unique. Although parents struggle over the death of the same child, each partner actually has sustained a different loss and has a unique mourning experience. Normal synchronicity of grief and mourning between two individuals means that bereaved parents are seldom at the same phase of grief at the same time because of their roles in the family, normal fluctuations in grief and differences in how they respond to the different phases of grief [11],[12]. Data suggest that the incongruence between spouses dramatically increases from two to four years after the death of a child. After the fifth year, it declines slightly [13]. The process of recovering from the loss of a baby takes time. A period of two to four years seems to be about average for parents, but five or more years of grief is not uncommon. The comparison of study data from both mothers and fathers in several studies makes it apparent that they recover in about the same time [14]. If parental bereavement is analyzed according to the six ‘R’ processes of mourning [4],[12], it is clear that bereaved parents have a number of built-in obstacles to mourning after the loss of a child [15]. Parents have difficulty recognizing the loss because it violates their basic function as parents and defies the laws of nature; often, social negation of the loss exists. With the loss of pregnancies and the deaths of young infants, no dramatic absence is apparent to signal the loss, causing the parents to have difficulty internalizing the fact that the death has really occurred. Recognizing the loss is also made difficult because the neonatal intensive care unit (NICU) exists to save lives with a technical power that is obvious to the parents. Bereaved parents also have difficulty reacting to the separation not in the least because more secondary losses, especially those relating to the self, take place in this type of bereavement. Recollecting and re-experiencing the deceased and the relationship is made more difficult for bereaved parents because there is little or nothing concrete to review or remember realistically. Relinquishing old attachments to the deceased and the old, assumptive world is difficult because an attachment to the deceased fetus or infant also includes attachments to the as a and also because attachments to the old, assumptive world a of the most of a and parental and Bereaved parents are in their to to the world the old one. a relationship with the deceased may be difficult because the parental relationship role that are not as as other to a on an (ie, compared with a it is more difficult to the role be because more for the bereaved parents have more difficulty because in a similar relationship is more when the relationship is with a or parent when the relationship is with a child. Many in the or in the and that are to the attachment of the parents with their infant become memories after a or an neonatal death. an for the baby while or is is an important part of this process, and can be by the and first to the parents about the baby and and his or her be Parents be to in family and which may as be around the including during of parents who about their baby or the which made more with the health care and there no about a lack of or news be by the in a and and in a parents, or one parent with support person who around for some time after the has been be the news of death be death Parents and an about their baby including a of the the and time to to and understandable there is a that parents that health care are something from be and and it is appropriate for to and to their feelings and important to be during and after the death of a Parents need to time with their or The to time with the baby be on several because some parents may need One can the parents whether they to be or to have family or a with some young parents may be because they have no with death. including for the and baby as a is important at this This may family and to the some time it is important that, at some or be to the baby, with the individuals can the and death, the loss and their need for grieving. to take during and after the death of a baby In no way the be the baby be for as long or as as the parents to do One about and or In the of a or death during the one to that caring individuals and the In a individuals with the parents and which become to the Parents are often that their infant may have experienced or and the caregivers need to that those It is that every attempt be made for any family to time with the baby and after death. care have become at that parents time with their but the of including other family is The grief of parents often is when their own parents, and can be with the baby, in It makes sense that can be more to a family they also have their own memories of the baby after a long in the With an death, the loss of their and they for their as the baby’s parents need to parent their own child, the have an to parent their One has to be because by the while can the baby’s parents the to parent their own After parents health care a about each and be to grief is real and be and cultural be and support from the appropriate If time any as be because this may be an important part of the grieving process for If bereavement may be and be in after the infant has but some issues their baby’s death. In neonatal death, the of often be to that it is not and have that two of who not a on that it have in is they parents from time with their or infant or child. One has to be to with a different cultural for or of support may be and difficult with the may be of those conditions. and social workers often have the and of as and after death, or and an or a of baby’s and Parents be are to avoid on their The in which the are be and are by the for in some are and of and social workers all is and do not forget to the A or with the parents after the to and is in an has been The that are to attachment to a relationship of and This when about the of life support need to take In a during the in the the health care in a relationship of and and in a that the of the parents to to that are in the of the With a may be as are and to but does not respond or may have to and for that may not and her not there but keep and to a does this a way for it also a process in the parents, who may the of when they that their child is not The of a also takes the of parents feeling that they are for the of The to life support never with the baby’s parents they not for their child’s death. One can that has been and nothing more can be It may be to the and the to the After some of statement that one has to the parents they and to keep the of the from the parents by that and the health care has the of the baby at and is to to the for the it for those the The that the or of support the parents they to be a from may be to that may have to take place the same or over a few days. One may parents and to be with they the of their baby’s death because few all the on which a the parents about their to support from their the to support is to the parents how it in and that the parents to that they are in all for their baby the about the of and take place It is advantageous to as as and and as It is to the infant the is parents to their baby while or is and other parents do parents to at the which be from other parents and the baby can be to a to time and to and The infant can be while to a and while in the of the infant and after and of the parents the infant a role in the grieving process and perinatal loss is in is not just a person’s health care not to type of or to but about and while caring for the infant and the may not be with the own and it the health care to and of and This one cannot one’s own on the the their and physical to bereavement. The health care take the in the care of for and for their with and care can the and of the family’s and a part of the perinatal loss bereavement and in of and parents with expectations and dreams about as parents and about the child that they The lost and constitute major secondary losses, which be no the age of the in death parents lose [11]. the individual and pregnancy, or neonatal death, any or all of the may into real loss of a person, or loss of a person, loss of status and loss. loss with pregnancy loss frequently has been but it can be by the parent have lost child have lost Pregnancy loss and has several not is there a real and loss of a baby, but there may also be a significant loss of They the loss of and the sense of with the the loss of and the loss of special The loss of from a to on her and in of building to are particularly important because they most this loss in a way that is from other types of bereavement Pregnancy loss a into a time of A that in expectant parents whose pregnancy loss is with is the of from The a may a who may be general from and her and may it difficult to remember the of the and of the be at all they may it is necessary to have the time with her baby, it means several hours after the and when to parents who a perinatal death in the including about as and at an infant with from the of an is different from that infant from the of a Often, parents the while the or not be that Many can be by or the baby in a or the care may have to parents to some time with the It is for the parents to be that they can the There is also the need for and the baby, and the of and and memories be a about and to take and that of bereaved mothers who or that and the baby after death Parents have feelings when one and the other one how difficult it be to and at the same time. the common of the as a A common of parents and of the is the lack of of the two Parents who lose one may have more difficulty during bereavement parents This is a unique with a high risk for a pathological grieving process special on their age, may some of the same symptoms that parents after a perinatal death. and family and reactions to death by age appropriate and while for normal and complicated grief Parents may become of their the may by their parents it is important for parents to time with each of their and to and Often, because they the baby others to to the lost infant to the from the may be that one of the parents or they may If the are old they be in time with their baby after the death and in With the of parents may about and they may through grieving parents who about their after types of parents may grieve the loss of to be a normal baby, and of their and dreams for their baby’s future. The grieving feelings may be by about for the baby’s and about thoughts about the baby not with individuals in the health care who with the parents on a long term are parents to a pregnancy on or some that they made the but others to emotional the one there may be the feeling of to have the of a on the other there may be a feeling of about having a pregnancy is and separation in of after a perinatal loss, as by There is in the way in which respond to pregnancy loss, and may six to after the pregnancy be during the period after loss or by more in the of a neonatal death, and grieve after pregnancy recover more they more and keep their feelings to the pregnancy, while often more This can to a lack of synchronicity in the grieving process between the two in with pregnancy and with a of and are also a part of coming to aspects of this have been in the The roles of the different health care in providing bereavement and The for that the of the health care are to the family a normal grief reaction, the loss, acknowledge their grief, the family that their feelings are normal and the of each their own about death and grief, and from the of their own including and about health and recognizing the that on can recognize and feelings about their baby’s death the own the of a death for parents and their and death of the cultural or there are and as in and care also remember that the normal grieving process is with between This is and does not pathology. grieving need to the parents are in their mourning process, and The of and to be with the parents, particularly because significant data by in to of Bereavement counselling be a part of the for health care who also have the to of the counselling are in of are and The care to a family and a perinatal loss can the stage for the family’s entire grieving process It is that every particularly and social care that or and the standard of care be on the of and The most that a health care can to a grieving family are a sense of caring and five of the care A who is which is a way of relating to a individual toward one a sense of and to be do the and a that, the and a with be The first means that a to an as it has in the life of the status and care the care become and If this does not the are not by the care and an or relationship may The of with or present to means to respond to grief and the of has to be The means for parents one do for This includes and time with the The means for the parents by about that may during the process or about means the to through this and to the future with meaning. One can that different the of the of the baby’s death has been into who this of care the unique of grieving parents by to have memories of their baby, and by a feeling of for in the of their and with the parents after is to the grieving that they in the The health care or grief who has been most with the parents in the the parents

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