Perinatal Grief and Complicating Factors Presented by Patti Budnik RN, BSN, CPLC

1. Perinatal Grief and Complicating FactorsPresented byPatti Budnik RN, BSN, CPLC

2. We have gathered to… • Better understand a parent’s experience of perinatal loss & recognize that each story is unique • Recognize the challenges that complicate grief • Determine ways to be supportive to someone experiencing complicated grief issues • Identify grief among family members • Identify ways of supporting the family at the time of loss and during the grief process

3. Why we are here…. Perinatal loss is something that forever remains a part of being, even for a witness. It is vital that perinatal care providers fully understand what families who experience perinatal loss endure and how they can assist with the grieving process (Cholette, 2012) Our role is to assist a family not to assume their needs.

4. Assess the Meaning of the Loss How is the loss conceptualized by the parents? “I lost the pregnancy at 8 weeks” “I lost the baby at 8 weeks” The conceptualization of the loss can effect the grief intensity and the time line in which the grief occurs.

5. Attachment to Pregnancy The Evolution of Prenatal Attachment: 1960’s – 1970’s • John Bowlby researched the relationship and bond between mother and child • Reva Rubin a maternity care nurse researched the maternal role before birth and it’s effect on the postpartum bond • Rubin identified four tasks occurring before birth • Seeking safe passage for baby and oneself • Ensure acceptance by significant others • A “binding-in” or incorporation of the baby into oneself • Giving of oneself

6. Attachment to Pregnancy • 1980’s the introduction of ultrasounds • 1982 Judith Lumley, a perinatal epidemiologist studied the impact on maternal bonding with a visual image • Findings suggested this view of the baby enhanced the ability to differentiate it as a ‘person’ • Lumley performed a study with first time parents on prenatal attachment with 5 interviews before and after the birth. A relationship between mom and baby was found: • 30% in the first trimester • 63% in the second trimester • 92% by 36 weeks of gestation

7. Attachment to Pregnancy Continued research in the1990’s • Quickening (first movements) is positively correlated with attachment • Attachment has a goal of providing security • Emotions and bonding are stimulated by the mothers responsibility to provide security • Prenatal attachment viewed as an “emotional bond”

8. Attachment to Pregnancy Weak prenatal attachment is associated with postpartum anxiety and depression during the pregnancy and in the postpartum(Brandon et al., 2009 & Gaffney, 1989) Early confirmation of pregnancy, sampling of heart tones, visualizing the baby via ultrasound, and identifying the sex of the baby are all typical experiences which enhance bonding but can intensify grieving if loss is experienced (Walter & McCoyd, 2009)

9. Attachment to Pregnancy Early attachment can deepen sense of loss (this can be seen in both parents) • Gender reveal parties • Shared photos of ultrasounds • Social Media announcements– YouTube, Facebook, Instagram

10. Attachment to Pregnancy Attachment to the pregnancy, and the grief that follows loss, are also affected by: • The age of the parents • Marital status • Cultural significance to the family • Sex of baby • History of previous loss/es • History of infertility • Mental health of the mother

11. Anticipation Attachment brings anticipation Pregnancy brings different reactions and emotions for every mother; for some women, these feelings of anticipation and love help develop a maternal identity. A woman begins to identify herself as a mother. When did you start bonding with your baby?

13. Attachment to Pregnancy The concept of prenatal attachment describes the emotional experience of pregnancy and an understanding of the psychological cost of the loss of the baby (Boyce et al., 2000) Attachment Bonding Anticipation ~ Loss ~

14. Complicated Grief Complications of Grief for Bereaved Parents and the Family

15. Complicated Grief • Complicated grief is characterized by feelings that are prolonged, intense and extreme: • Yearning for the loved one • Anger, often displaced • Isolation from others • Sense that life is meaningless • Inability to function in activities of daily living Referred to as Persistent Complex Bereavement Disorder by the DSM-5 • One of ten bereaved adults will experience prolonged grief disorder (Lundorff et.al, 2017)

16. Complicated Grief Predictors of complicated grief after perinatal loss include: • Lack of social support (family or society) • Pre-existing relationship difficulties • Absence of surviving children • Ambivalent attitudes toward the pregnancy • Termination of pregnancy due to a fetal abnormality • Projections of guilt or blame Kersting & Wagner 2012

17. Risk Factors toComplicated Grieving • Recurrent, past losses, or infertility • Caring for remaining children • Grieving a genetic abnormality and a death • Multi-gestational pregnancy loss - celebrating the living child and mourning the baby who died • Trauma after loss- i.e. police investigation • Prior mental health issues with existing diagnosis • Maternal drug use • Maternal death

18. Risk Factors toComplicated Grieving • Limited access to resources for support and/or grief education • Inadequate or negligent care: • Lack of supportive emotional care, insensitivity, poor communication, and avoidant behaviors by physicians and nurses can increase emotional distress and resentment in parents and family members (VanDinter & Graves, 2012)

19. Risk Factors toComplicated Grieving • The personal experience of grief must be processed through the eyes of the grieving individual. It is not just who you lost but what you lost as a result of the death. • Secondary Loss: is a loss that is a consequence from the primary loss, the resulting grief can be equally as difficult. • Identity as a parent • Self-Confidence – the mother states feelings of inadequacy or feeling incomplete • Loss of future and dreams • Social changes • Family structure • Faith and spirituality struggles Wheeler, 2004

21. Complicating Factors:Subsequent Pregnancy • Parents may worry that others will think of the new baby as a “replacement child” – that they are no longer grieving • Parents may be fearful to bond with the new baby • Parents may disagree on when or if to have another baby • Family dynamics of other family members having babies, timing and overlapping dates • The past trauma of a birth that resulted in a death can lead to controlling or suspicious behavior towards the care providers

22. Subsequent Pregnancy Additional Complicated Factors: • Are at risk for Perinatal Mood & Anxiety Disorder • Increased risk of anxiety and depression up to 3 years after their loss • Unresolved grief is not present in all parents but if present, it will inhibit attachment to the new baby (O’Leary et al., 2011 & O’Leary, 2004)

23. Subsequent Pregnancy Supportive Factors to consider: • The recommended timing of a subsequent pregnancy after a loss is not consistent. A parent’s psychological readiness usually follows a physical readiness. • Recognize each parent as an individual with different needs, views, and beliefs. Their journey of grief and healing will be different. https://pregnancyafterlosssupport.com

24. Subsequent Pregnancy Encouragement & reassurance that acknowledging their past loss will help the attachment with the current pregnancy .

25. Types of Grief • Normal Grief • Prolonged Grief • Exaggerated Grief • Masked Grief • Anticipatory Grief • Complicated Grief • Chronic Grief • Delayed Grief • Disenfranchised Grief • Traumatic Grief • Collective Grief • Inhibited Grief • Abbreviated Grief • Incongruent Grief • Absent Grief • Cumulative Grief • Distorted Grief

26. Common in Perinatal Loss Delayed Grief- intentionally postpone grief; often due to other losses or stressful life events Disenfranchised Grief- the loss is not acknowledged and often minimized by society Cumulative Grief – experience a second loss while still grieving a first loss Traumatic Grief- loss that is sudden or violent; symptoms lasting over 2 months that have impaired functioning

27. Being Trauma Informed Symptoms of Trauma: • Tendency to isolate oneself or feelings of detachment • Depression, anxiety, fear, anger • Emotional swings • Diminished interest in everyday activities • Self-blame, survivors guilt, or shame Coping with Trauma: • Connect with others, especially those who have shared a similar experience • Ask for referral to therapy & behavioral health support • Commit to something meaningful and important everyday • Write about the experience for yourself or to share with others The National Council for Behavioral Healthcare www.TheNationalCouncil.org

28. When to Seek Professional Intervention • Recurrent issues surface • Grief interfering with daily functioning • Suicidal thoughts • Avoidance • Marital distress • Physically aggressive behavior • Impulsive behavior (drug or alcohol use, cutting or promiscuity) • Denial of the death

29. Grief Depression vs. Grief Depression Focus on self May not respond to support Mood stays down; low energy and motivation Can’t care for self or others; can’t think, work, plan Feels guilt in laughing, no pleasure, hopeless, withdrawn Loss denied or meaningless Focus on deceased Accepts warm support Mood changes: angry, restless, agitated Can care for self, others, and tasks, can concentrate, plan Gradually laughs, can enjoy others, world, activities Acknowledges loss, meaning Adapted from Dyer, 2008; and Limbo & Wheeler, 1998/2010

30. Grief vs. Mourning Grief:the internal thoughts and feelings about a loss. • All the emotions-the sadness, anger, shock and pain Mourning: the outward expression of grief • Crying • Talking about your loved one • Acknowledging special dates • Journaling Grief is a lifelong and life changing experience Shamian, 2012

31. Providing Support Everyone grieves differently. Everyone’s loss or story is unique. Grief is personal, each timeline undefined; but the goal of healthy grieving is a progression towards acceptance or reintegration of loss to a new different life. • Accept the reality of the loss • Experience the pain • Adjust to a new reality Cholette & Gephart 2012

32. From Grieving to Healing Finding Hope: Reinvestment and integration of loss into Life • Life is no longer totally consumed with loss • Calendar becomes less important • Positive remembrances become more natural • The future is, once again, a possibility • New energy, renewed sense of purpose It’s not an acceptance but a reconstruction

33. From Grieving to Healing Healing after the loss of a baby • Hope • Joy in remembering • Continuing to love • Making a legacy of your baby’s life • “What do I do with my love?” “The child I have physically parented the least has made me the mother I am today.”

34. From Grieving to Healing Understanding bereavement, we acknowledge the parental need not to “let go” but rather to reconstruct relationships with their deceased child in terms of a continuing bond (Price, 2015).

35. From Grieving to Healing Reorganize one’s life to restore coherence and maintain continuity between past and present (Niemeyer, 2000 & 2006).

36. From Grieving to Healing By redirecting the dreams and wishes for their baby the relationship bond is honored.

37. Understanding the Grief Process The Unique Grief of Couples, Partners, Grandparents & Loved Ones When a Baby Dies

38. A Grieving Family When a baby in the family dies, everyone loses someone different: a child, a grandchild, a sibling, a cousin, a niece, a nephew, a friend. The emotions and reactions will, therefore, be different among those who are grieving.

39. Couple’s Grief Grieving together: • Couples often have different grieving patterns • Parents blend styles, expressions, and culture in grief • Each parent has their own individual needs and feelings • This is completely natural • This needs to be respected and understood • They may not always be seated together but they are on the same ride

40. Joy in remembering Hope Disillusioned No Answers Integration of Loss Hurtful comments New Person Frustrated No concentration Disappointed Confusion Lonely Ache for Baby Questions Unable to sleep Anger Depressed Starts all over again Shock Losing your mind Despair

41. Different Styles of Grieving Intuitive Grieving: • Feelings/Expressions of grief (crying, suffering) mirror the inner experience • Expression of feelings facilitates healthy grieving Instrumental Grieving: • Thinking is predominant over feeling (feelings less intense) • General reluctance to talk about feelings • Brief periods of confusion, forgetfulness, obsessiveness are common Doka & Martin, 2010 Remember: While gender influences grief, the pattern of grief is not determined by gender.

42. Couple’s Grief • Moving beyond stereotypes of “emotional” (feminine) and “intellectual” (masculine) to new language and understanding of styles of grief: • Intuitive • Instrumental • Incongruent Grief – Grieving alongside someone but with different grieving styles. • The style of grief is a continuum; rarely exclusive to one style of grieving. Doka & Martin, 2010

43. Couple’s Grief The death of an infant or child in the family is widely believed to constitute an especially traumatic bereavement that can result in long-lasting, or life-long symptoms for parents. Bereaved parents are at risk for: • Depression, anxiety, PTSD • Complicated grief • Health problems • Marital problems Thieleman et al., 2014

44. Couple’s Grief • Studies show a correlation between infant loss and relationship strain – even up to a decade after the loss of the baby (Gold et. al 2010) • Stillbirth has the greatest risk of divorce compared to miscarriage or infertility • The experience of more than one loss increased the risk of divorce

45. Couples Grief Pre-existing or contributing factors that influence grief: • Strength of the marriage prior to the loss • Cultural differences between the couple • Age of parents • Pre-existing health conditions, infertility • Financial security • Unplanned pregnancy • Other children or childbearing desires

46. Couple’s Grief Parents need to know that: • They are not alone • What resources are available • Communication is essential • Aftercare support is essential • Support groups • Online support • Ongoing communication with their companion

47. Couple’s Grief Because some individuals choose not to talk about their feelings does not mean they do not feel; but rather they don’t have the words to express their feelings or they don’t have the need to do so (Wheeler, 2004)

48. Partner Grief Partners should be considered a primary patient with their own unique needs • Fathers often grieve with same intensity as mothers (Reilly-Smorawski et al., 2002) • Fathers express feelings of self-blame, loss of identity, anger, fear, loneliness, guilt, and a need to remain strong for the family (Callister, 2006) • Due to societal pressures to return to normalcy and recover from the grieving process, men are reluctant to seek support (Carroll & Shaefer, 1994)

49. Partner Grief Fathers: In a recent study, fathers of stillborn babies expressed gratitude when healthcare professionals treated their newborn “with respect and without fear,” “with extraordinary reverence,” they expressed that their fatherhood was validated by providers Cacciatore et al., 2013

50. Partner Grief Partners may feel: • Helpless • Protective • The need to be the strong one • The need to be the problem solver Partners may: • Experience the loss with same intensity • Express the depth of the loss differently • Return to society quickly and stay busy • May postpone their personal grief