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Loss and Grief in the Childbearing Period

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Loss and Grief in the Childbearing Period Denise C t -Arsenault, PhD, RNC, IBCLC, FNAP * * * * * * * * * * * * * * * * * * * * * Care for the Caregiver (Continued ... – PowerPoint PPT presentation

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Title: Loss and Grief in the Childbearing Period


1
Loss and Grief in the Childbearing Period
  • Denise Côté-Arsenault, PhD, RNC, IBCLC, FNAP

2
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).

3
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
4
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).

5
Perinatal Mortality
  • Perinatal mortality has two accepted definitions
  • Death at gt20 weeks gestation and lt28 days of life
  • Death at gt28 weeks gestation and lt7 days of life
  • Perinatal mortality includes ectopic pregnancy,
    miscarriage and stillbirth.

6
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).

7
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).

8
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).

9
Infant Mortality (Continued)
  • In 1990, the sudden infant death syndrome (SIDS)
    rate was 1.3 per 1,000 births in 2006, the rate
    was lt.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.

10
History of Pregnancy and Infant Loss in America
  • Americas perspectives on death are evolving.
  • Although losses in pregnancy and birth were seen
    as real possibilities in the 18th and 19th
    centuries, families still mourned these losses
    (Hoffert, 1989).

11
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.

12
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.

13
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.

14
Rubins Tasks of Pregnancy
  • The mother (Rubin, 1984)
  • Ensures safe passage for self and baby
  • Ensures social acceptance of self and baby
  • Binds-in to the baby
  • Gives of herself
  • Rubins framework helps nurses identify how women
    are affected when pregnancy tasks are incomplete.

15
Pregnancy as a Rite of Passage
  • Each rite of passage has three stages
  • Separation
  • Transition
  • Incorporation
  • A woman separates herself from her old status
    when she announces her pregnancy.
  • The transition takes place during the 9 months of
    pregnancy.

16
Swansons Theory of Caring
  • Through inductive analyses, Swanson (1991)
    identified five caring processes
  • Knowing
  • Being with
  • Doing for
  • Enabling
  • Maintaining belief

17
Prenatal Testing
  • Prenatal tests include
  • Biophysical profile (BPP)
  • Chorionic villus sampling (CVS)
  • First trimester screening
  • Maternal blood screening
  • Amniocentesis
  • Ultrasound
  • Fetal monitoring

18
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.

19
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
  • The purpose of a test
  • What it can and cannot tell
  • Its risks for mother and baby

20
Ultrasound
  • It may be during the ultrasound that a couple
    learns of their babys death high anxiety prior
    to ultrasounds in subsequent pregnancies should
    be expected for these parents (OLeary, 2005).
  • Providers may give ultrasound images to parents
    to reassure them and to assist in differentiating
    a new pregnancy from past ones.

21
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.

22
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.

23
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.

24
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.

25
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).

26
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.

27
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.

28
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 ones
    ability to function and enjoy life should be
    evaluated by a mental health professional
    (Morrow, 2009).

29
Theories of Grief
  • Freud (1961/1917) set the stage for early
    theories of grief.
  • Kübler-Ross (1969) described grief as a series of
    stages
  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

30
Theories of Grief (Continued)
  • Stroebe and Schut (2001) suggest a dual process
    of grieving that includes oscillation between two
    coping modes
  • Loss orientation (focused on adjusting to a loss)
  • Restoration orientation (focused on how to move
    on in light of a loss)

31
Grieving Styles
  • Martin and Doka (1999) identify two primary
    grieving styles that are formed by culture,
    personality and gender
  • Instrumental grieving
  • Intuitive grieving

32
Grieving Styles (Continued)
  • Common grief responses specific to perinatal loss
    include
  • Heavy or aching arms
  • Avoiding pregnant women and babies
  • Sense of loss of the future and shattered dreams
  • Sense of vulnerability in the world (not as safe
    as always assumed)
  • Hypervigilance with other children

33
Developmental Stages and Grief
  • An individuals 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.

34
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.

35
Helping Families Plan for Loss (Continued)
  • Nursing considerations when helping families plan
    for a babys death
  • The familys cultural and spiritual beliefs
  • The familys level of acceptance of the babys
    condition
  • The support the family gets from one another and
    from others
  • The familys ability to agree that the goal is
    their babys comfort and care, rather than a cure

36
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.

37
Neonatal Palliative Care
  • Goals of palliative care (Catlin Carter, 2002)
  • Quality of life
  • Comfort or relief from symptoms
  • Support with tasks and bereavement
  • Collaboration across disciplines is critical.
  • Nurses require palliative-care education that
    includes clinical and ethical aspects.

38
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
    persons grief it is a vital aspect of care
    (Shah, 2004).

39
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 womans psyche and relationships with others,
    but also on parenting subsequent to loss and on
    other children (Bennett et al., 2005 Woods
    Woods, 1997).

40
Parents (Continued)
  • Because men and women often grieve differently,
    parents reactions may be disparate even though
    both have experienced the same loss (OLeary
    Thorwick, 2006).
  • This can lead to conflicts about what and how to
    do things, as well as what can make them feel
    better.

41
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.

42
Grandparents
  • A grandparents response to the loss of a
    grandchild may differ from the parents 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.

43
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.

44
Siblings and Other Children (Continued)
  • Healthy grieving for children can be predicted by
    two factors (Himebauch et al., 2008)
  • Accessibility of one significant adult
  • Being in a safe environment where they are
    physically and emotionally taken care of

45
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.

46
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.

47
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).

48
Care at the Time of Loss (Continued)
  • The nurse should provide grief-related
    information based on the mothers 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.

49
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.

50
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.

51
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.

52
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).

53
Naming the Baby
  • Giving the baby a name increases the babys
    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.

54
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.

55
Care of the Deceased
  • Burial and cremation are the primary means of
    dealing with a deceased babys body.
  • Gestational age, state law, religion and culture
    are considered in care of a deceased baby
    (Chichester, 2005 Shah, 2004).
  • Nurses must know their institutions protocols
    and explain all options and procedures to parents.

56
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.

57
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.

58
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.

59
Miscarriage
  • Miscarriage may not be acknowledged by a womans
    friends and family as a true form of loss
    therefore, its 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).

60
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).

61
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).

62
Pregnancy After Loss (Continued)
  • Nursing strategies
  • Acknowledge the womans loss.
  • Listen to and know her story.
  • Acknowledge that she may be anxious and scared.
  • Acknowledge that prenatal testing may be
    stressful for her.
  • Provide reassurance, but remind her that there
    are no guarantees.
  • Encourage her to come in and call as often as she
    needs to.

63
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.

64
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.

65
Care for the Caregiver
  • The nurses experience of perinatal loss
  • Acknowledge your connection to this baby and
    family.
  • Allow yourself to grieve.
  • Be kind to yourself everyone has frailties.
  • Talk with others gain support.
  • Take care of yourself physically, emotionally,
    socially and spiritually.
  • Self-reflection is critical for self care.

66
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.

67
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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