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Loss and Grief in the Childbearing Period Denise Côté-Arsenault, PhD, RNC, IBCLC, FNAP
© 2011 March of Dimes Foundation Introduction Perinatal loss includes infertility during the preconception period, fetal death during pregnancy and infant death in the first year of life. Losing a wished-for child is startling and unexpected. Responses to this loss range from disappointment to life-changing anguish (Woods & Woods, 1997).
© 2011 March of Dimes Foundation Types of Perinatal and Neonatal Loss Ectopic pregnancy Elective abortion Fetal death Infertility Miscarriage (spontaneous abortion) Neonatal death Stillbirth Sudden infant death syndrome (SIDS) Sudden unexplained death in infancy (SUID) Therapeutic abortion
© 2011 March of Dimes Foundation Infertility Infertility is the inability to conceive after at least 1 year of trying. In the United States in 2002, about 12 percent (7.3 million) of women age 15 to 44 had difficulty getting pregnant or carrying a baby to term (Chandra, Martinez, Mosher, Abma & Jones, 2005).
© 2011 March of Dimes Foundation Perinatal Mortality Perinatal mortality has two accepted definitions: o Death at >20 weeks gestation and <28 days of life o Death at >28 weeks gestation and <7 days of life Perinatal mortality includes ectopic pregnancy, miscarriage and stillbirth.
© 2011 March of Dimes Foundation Perinatal Mortality (Continued) There are an estimated 1 million fetal losses each year in the United States; most occur before20 weeks gestation (MacDorman et al., 2007). Miscarriage rate estimates range from 15 percent to 50 percent of conceptions (ACOG, 2002; American Pregnancy Association, 2007; Stoppler, n.d.). The stillbirth rate is 6.2 per 1,000 births (ACOG, 2009).
© 2011 March of Dimes Foundation Infant Mortality Infant mortality is the death of an infant during the first year of life. The infant mortality rate in the U.S. has not declined much since 2000; it hovers at around 6.68 per1,000 births ( Mathews & MacDorman, 2010 ).
© 2011 March of Dimes Foundation Infant Mortality (Continued) Preterm birth continues to be a primary cause of infant death in the United States. More than half a million babies were born prematurely in the United States in 2007 (Hamilton et al., 2008). All preterm infants are at greater risk than term infants for lifelong health problems, and their early births take emotional and financial tolls on their families (Als et al., 1994; Glaser et al., 2007).
© 2011 March of Dimes Foundation Infant Mortality (Continued) In 1990, the sudden infant death syndrome (SIDS) rate was 1.3 per 1,000 births; in 2006, the rate was <.50 per 1,000 births (American Lung Association, 2010). Sudden unexpected death in infancy (SUID) includes SIDS and other causes of infant deaths such as suffocation.
© 2011 March of Dimes Foundation History of Pregnancy and Infant Loss in America America’s perspectives on death are evolving. Although losses in pregnancy and birth were seen as real possibilities in the 18 th and 19 th centuries, families still mourned these losses (Hoffert, 1989).
© 2011 March of Dimes Foundation History of Pregnancy and Infant Loss in America (Continued) Birth moved from the home to the hospital in the early 1900s. Pain relief efforts left women unaware of their pain and of actual birth, whether stillborn or live (Leavitt, 1986). The stage was set for hiding death from women and their families; a shroud of silence grew around perinatal death.
© 2011 March of Dimes Foundation History of Pregnancy and Infant Loss in America (Continued) Acknowledgement and integration of loss into care began slowly, but it has persevered. The need for this approach forms the basis for training for nurses, bereavement counselors and research into best-care practices.
© 2011 March of Dimes Foundation Attachment Theory Bowlby (1969) was the first to identify and discuss human attachment. Klaus and Kennel (1976) describe behaviors that demonstrate a bond between mother and baby before birth. Peppers and Knapp (1980) show that attachment begins when planning a pregnancy.
© 2011 March of Dimes Foundation Rubin’s Tasks of Pregnancy The mother: (Rubin, 1984) 1.Ensures safe passage for self and baby 2.Ensures social acceptance of self and baby 3.Binds-in to the baby 4.Gives of herself Rubin’s framework helps nurses identify how women are affected when pregnancy tasks are incomplete.
© 2011 March of Dimes Foundation Pregnancy as a Rite of Passage Each rite of passage has three stages: 1.Separation 2.Transition 3.Incorporation A woman separates herself from her old status when she announces her pregnancy. The transition takes place during the 9 months of pregnancy.
© 2011 March of Dimes Foundation Swanson’s Theory of Caring Through inductive analyses, Swanson (1991) identified five caring processes: 1.Knowing 2.Being with 3.Doing for 4.Enabling 5.Maintaining belief
© 2011 March of Dimes Foundation Prenatal Testing Prenatal tests include: o Biophysical profile (BPP) o Chorionic villus sampling (CVS) o First trimester screening o Maternal blood screening o Amniocentesis o Ultrasound o Fetal monitoring
© 2011 March of Dimes Foundation Prenatal Testing (Continued) Prenatal tests can have a significant impact on women and their families; this impact often is neither acknowledged nor addressed by health care providers. Test results can be shocking. Just having a test can bring back memories of bad news in past pregnancies.
© 2011 March of Dimes Foundation Prenatal Testing (Continued) Technological advances in recent decades have opened the door to assessing genetic make-up and witnessing fetal development like never before. Families need to understand: o The purpose of a test o What it can and cannot tell o Its risks for mother and baby
© 2011 March of Dimes Foundation Ultrasound It may be during the ultrasound that a couple learns of their baby’s death; high anxiety prior to ultrasounds in subsequent pregnancies should be expected for these parents (O’Leary, 2005). Providers may give ultrasound images to parents to reassure them and to assist in differentiating a new pregnancy from past ones.
© 2011 March of Dimes Foundation Fetal Monitoring Electronic fetal monitoring in the clinical setting began in the 1960s. Although parents may have seen the heart beating on ultrasound, the sound through the abdominal wall still holds high significance.
© 2011 March of Dimes Foundation Genetic Testing and Counseling Whether prior to conception or after a loss, understanding the familial traits or risks of having a baby with genetic disorders or disease can be useful. Chromosomal tests can determine the presence of single-gene defects for only select diseases or conditions; however, the patterns of inheritance are known in a vast number of disorders.
© 2011 March of Dimes Foundation Genetic Testing and Counseling (Continued) Genetic counseling is complex and requires specialized education and training. Nurses should recognize that genetic causes of loss can lead to feelings of guilt, blame and defensiveness within extended families as they review family histories.
© 2011 March of Dimes Foundation Elective Abortion The ethical debate over abortion affects loss issues associated with life-threatening fetal conditions discovered in the first half of pregnancy. Nurses must understand their own beliefs about elective abortion and support families as they make their decisions.
© 2011 March of Dimes Foundation Fetal Personhood The issue of fetal personhood is complex with social, religious, legal and ethical dimensions. Bereaved parents have assigned some degree of personhood to their baby; therefore, their loss is real, for a real person who would have been a part of their life and their family (Côté-Arsenault & Dombeck, 2001).
© 2011 March of Dimes Foundation The Tentative Pregnancy and Anticipatory Grief Rothman (1986) found that women withheld their emotional bonds for the pregnancy and baby until after they received test results. Anticipatory grief is the preparation for death during or prior to an inevitable loss (Hynan, 1986; Rando, 1986), as opposed to grief after a loss.
© 2011 March of Dimes Foundation Grief and Mourning Grief is an emotional response to the loss of something or someone held dear; it is the internal response to loss. Mourning is a public or external response to the death of a loved one. The period of time during which grief and mourning occur after a death is called bereavement.
© 2011 March of Dimes Foundation Grief and Mourning (Continued) No two people respond to the same event or loss in exactly the same way; grief is individual and depends on how loss affects each person. Intense and continued distress symptoms beyond 6 months to 1 year that interfere with one’s ability to function and enjoy life should be evaluated by a mental health professional (Morrow, 2009).
© 2011 March of Dimes Foundation Theories of Grief Freud (1961/1917) set the stage for early theories of grief. Kübler-Ross (1969) described grief as a series of stages: 1.Denial and isolation 2.Anger 3.Bargaining 4.Depression 5.Acceptance
© 2011 March of Dimes Foundation Theories of Grief (Continued) Stroebe and Schut (2001) suggest a dual process of grieving that includes oscillation between two coping modes: 1.Loss orientation (focused on adjusting to a loss) 2.Restoration orientation (focused on how to move on in light of a loss)
© 2011 March of Dimes Foundation Grieving Styles Martin and Doka (1999) identify two primary grieving styles that are formed by culture, personality and gender: 1.Instrumental grieving 2.Intuitive grieving
© 2011 March of Dimes Foundation Grieving Styles (Continued) Common grief responses specific to perinatal loss include: o Heavy or aching arms o Avoiding pregnant women and babies o Sense of loss of the future and shattered dreams o Sense of vulnerability in the world (not as safe as always assumed) o Hypervigilance with other children
© 2011 March of Dimes Foundation Developmental Stages and Grief An individual’s developmental stage (Erikson, 1980) influences the way he processes and responds to loss. Most pregnant women and their partners are in the stage of young adulthood (19 to 40 years of age). The basic conflict during this stage is intimacy vs. isolation, in which individuals strive for positive relationships to avoid isolation.
© 2011 March of Dimes Foundation Helping Families Plan for Loss In instances where death is inevitable and there is time to plan, nurses can do many things to help the family (Kavanaugh et al., 2009). Decision-making is a process, not a one- time event.
© 2011 March of Dimes Foundation Helping Families Plan for Loss (Continued) Nursing considerations when helping families plan for a baby’s death: o The family’s cultural and spiritual beliefs o The family’s level of acceptance of the baby’s condition o The support the family gets from one another and from others o The family’s ability to agree that the goal is their baby’s comfort and care, rather than a cure
© 2011 March of Dimes Foundation Birth Plans A birth plan is a communication tool for parents to use to express their thoughts and desires for an upcoming birth. The same idea applies, and may be more important, for parents who know they are delivering a stillborn, a sick baby or a baby with a known life-threatening condition.
© 2011 March of Dimes Foundation Neonatal Palliative Care Goals of palliative care (Catlin & Carter, 2002) : o Quality of life o Comfort or relief from symptoms o Support with tasks and bereavement Collaboration across disciplines is critical. Nurses require palliative-care education that includes clinical and ethical aspects.
© 2011 March of Dimes Foundation Helping Families Grieve: Cultural and Religious Considerations Nurses play an instrumental role in giving families permission to turn to their culture and faith to help them with grief and mourning. Culturally sensitive care forms a positive foundation for dealing with and healing a person’s grief; it is a vital aspect of care (Shah, 2004).
© 2011 March of Dimes Foundation Parents Parental grief has been recognized as the most intense and overwhelming type of grief (Davies, 2004). There is increasing evidence of short- and long-term effects of perinatal loss, not only to the woman’s psyche and relationships with others, but also on parenting subsequent to loss and on other children (Bennett et al., 2005; Woods & Woods, 1997).
© 2011 March of Dimes Foundation Parents (Continued) Because men and women often grieve differently, parents’ reactions may be disparate even though both have experienced the same loss (O’Leary & Thorwick, 2006). This can lead to conflicts about what and how to do things, as well as what can make them feel better.
© 2011 March of Dimes Foundation Parents (Continued) Nurses can provide parents with detailed information about support services and options. Nurses can present options to parents as labor, birth and discharge unfold, rather than as a vast, all-inclusive menu.
© 2011 March of Dimes Foundation Grandparents A grandparent’s response to the loss of a grandchild may differ from the parent’s response to the loss of a child. Nurses can explain to grandparents that their care activities are for the benefit of the parents, even though grandparents may have different experiences or expectations.
© 2011 March of Dimes Foundation Siblings and Other Children Children grieve in ways quite different than adults, often in an uneven pattern. Their concept of death varies by developmental stage, and grief can reemerge at a later stage when they deal with it at a different level.
© 2011 March of Dimes Foundation Siblings and Other Children (Continued) Healthy grieving for children can be predicted by two factors (Himebauch et al., 2008) : 1.Accessibility of one significant adult 2.Being in a safe environment where they are physically and emotionally taken care of
© 2011 March of Dimes Foundation Siblings and Other Children (Continued) Infants: Maintaining routines and avoiding separation are important. Preschoolers: Nurses and parents can give children straightforward explanations, correct their thinking when necessary, and be clear that the baby is not coming back.
© 2011 March of Dimes Foundation Siblings and Other Children (Continued) School-age children: Caregivers can give clear explanations and involve them with funeral or memorial services if they are comfortable participating. Adolescents need adult support and time with their peers.
© 2011 March of Dimes Foundation Care at the Time of Loss Nurses can offer parents options and guide, but not push, them in the hours after death (Badenhorst & Hughes, 2007). Physical care should be as thorough as in the case of a healthy labor and birth; emotional issues may seem overwhelming, but physical safety remains a priority (Gold, 2007).
© 2011 March of Dimes Foundation Care at the Time of Loss (Continued) The nurse should provide grief-related information based on the mother’s readiness. Continuity of care should be promoted and facilitated, if possible; reducing the number of staff interacting with the family can help reduce their stress and limit errors in communications.
© 2011 March of Dimes Foundation Holding the Baby Family contact with the deceased baby should not be restricted. Holding the baby should be offered but never forced. PLIDA has detailed position statements and practice guidelines for offering parents the opportunity to hold their baby.
© 2011 March of Dimes Foundation Mementoes and Photos The nurse can help parents create memories, gather mementoes and take photos. Photographs can be treasured mementoes for families. Photographs may be unacceptable to some, depending on their views of the dead or the unborn.
© 2011 March of Dimes Foundation Grief Environment The nurse should find a quiet moment to discuss how a woman and her family want to express their grief. The nurse should use a trained interpreter if there are language differences.
© 2011 March of Dimes Foundation Family Involvement Gender, role and timing are cultural considerations that may determine involvement of extended family after a perinatal loss. The nurse can ask a woman whom she wants to be with her, where she would like her family to be, what she needs to wear and where she physically wants to be (Shah, 2004).
© 2011 March of Dimes Foundation Naming the Baby Giving the baby a name increases the baby’s social status and personhood. There is no timeframe for naming a baby, especially in the case of early loss when gender is difficult to determine.
© 2011 March of Dimes Foundation Autopsy Autopsy often provides valuable medical information about the cause of death; it also can provide guidance for future pregnancies. Parents should receive information about the purpose of an autopsy and be asked for consent to have the procedure done.
© 2011 March of Dimes Foundation Care of the Deceased Burial and cremation are the primary means of dealing with a deceased baby’s body. Gestational age, state law, religion and culture are considered in care of a deceased baby (Chichester, 2005; Shah, 2004). Nurses must know their institution’s protocols and explain all options and procedures to parents.
© 2011 March of Dimes Foundation Rituals and Services Nurses can ask families about rituals or traditions they would like to observe. Rituals include baptism, songs, readings and ceremonies. Families need time to make arrangements for funerals and memorial services. Memorial services can be done at any time, even long after the actual death.
© 2011 March of Dimes Foundation Discharge Planning Bereaved parents need information, support and planning help for the early days after their loss. Instructions should include physical care of the woman. Bereavement materials should include common responses to grief and loss, community and online resources, and a list of symptoms and concerns that warrant contacting a health care provider.
© 2011 March of Dimes Foundation Discharge Planning (Continued) Going home to pregnancy and baby things can be difficult for grieving families. Having a list of specific things for people to do for the family can be beneficial. Hospital staff can call families 1 to 2 weeks post-loss to see how they are doing and if they have questions.
© 2011 March of Dimes Foundation Miscarriage Miscarriage may not be acknowledged by a woman’s friends and family as a true form of loss; therefore, it’s critical that the nurse support the woman and her partner medically and emotionally. Nurses can assist mothers who miscarry by listening to their stories and helping them create their own memories (Kobler et al., 2007).
© 2011 March of Dimes Foundation Intimacy While difficult to bring up, nurses should discuss contraception with couples. Some couples report difficulty in resuming intimacy due to reminders, perineal trauma and fear of pregnancy (Davis, 1996; Kohn & Moffitt, 2000).
© 2011 March of Dimes Foundation Pregnancy After Loss Pregnancy after perinatal loss, both the next pregnancy and any subsequent pregnancies, often is accompanied with anxiety and fear (Armstrong & Hutti, 1998; Côté-Arsenault et al., 2001). The timing of the next pregnancy has been the subject of research with mixed findings (Barr, 2006).
© 2011 March of Dimes Foundation Pregnancy After Loss (Continued) Nursing strategies: o Acknowledge the woman’s loss. o Listen to and know her story. o Acknowledge that she may be anxious and scared. o Acknowledge that prenatal testing may be stressful for her. o Provide reassurance, but remind her that there are no guarantees. o Encourage her to come in and call as often as she needs to.
© 2011 March of Dimes Foundation Nursing Roles and Settings In all nursing settings, when a perinatal loss is suspected, expected or confirmed, nurses should be knowledgeable and caring as they address informational, emotional and medical needs of families.
© 2011 March of Dimes Foundation Hospital Protocols Protocol checklists for required nursing actions include providing maternal and neonatal care, creating memories for families, and providing emotional and spiritual support. In all settings, nurses should use established checklists and protocols to ensure that all aspects of care and bereavement services are provided.
© 2011 March of Dimes Foundation Care for the Caregiver The nurse’s experience of perinatal loss: o Acknowledge your connection to this baby and family. o Allow yourself to grieve. o Be kind to yourself; everyone has frailties. o Talk with others; gain support. o Take care of yourself physically, emotionally, socially and spiritually. Self-reflection is critical for self care.
© 2011 March of Dimes Foundation Care for the Caregiver (Continued) Papadatou (2000) suggests that grieving is an individual and a social-interactive process. Nurses can create a network of care providers, including nurses and other professionals, who support each other, listen and understand.
© 2011 March of Dimes Foundation Summary Nurses often are caregivers of bereaved parents and, therefore, need to have background in and comfort with issues surrounding care of families experiencing loss.
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