Grief in the NICU: Identifying, Understanding and Helping Grieving Parents

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PowerPoint slides presented March 31, 2009 as a Teleconference for "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal …

PowerPoint slides presented March 31, 2009 as a Teleconference for "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal Conference held at Jacobi Medical Center.
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  • 1. Grief in the NICU Identifying, Understanding and Helping Grieving Parents Kirsti A. Dyer MD, MS Physician · Professor Grief and Loss Expert HHC Perinatal Centers Meeting Jacobi Medical Center March 31, 2009
  • 2. Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience HHC Conference Jacobi Medical Center Tuesday, March 31, 2009 Part of the © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 3. Learning Objectives
    • Identify common emotional responses of grieving parents of NICU babies.
    • Understand the common grief response.
    • Learn how grief affects NICU parents and can affect parents differently.
    • Discover strategies to work with and help grieving parents of NICU babies.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 4. Presentation Overview
    • Background
    • Understanding Loss and Grief
    • Loss and Grief in the NICU
    • Coping with Loss and Grief
    • Strategies to Aid Grieving Parents
    • Follow up – Aftercare
    • Final Thoughts
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 5. Background – Case Presentation
    • Case Presentation
    • Case Presentation the Family
    • Findings from a NICU Experience
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 6. Case Presentation - Quote
    • Dianne I. Maroney, R.N.
    • NICU Nurse & NICU Parent
    • www.premature-infant.com
    My own worst nightmare happened... I delivered a 26 week 1 day, 790 gm baby girl. Suddenly I felt the anguish I had only seen in others and I began to understand the depth of pain and the length of struggle parents live through. It was difficult to comprehend the overwhelming nature of this crisis...until I lived it.
  • 7. Case Presentation - 1
    • A term female infant was born at 4,465 grams (9 lbs. 13 oz), large for gestational age to a 41 year-old G2P1 mother. The baby was born by repeat elective cesarean section with Apgar scores of 9 at one minute and 9 at five minutes.
    • Initially admitted to the Well Baby Nursery, she began desaturating at approximately 1 ½ hours of age with an oxygen saturation of 85 % on room air. She also developed hypoglycemia with a glucose chemstrip of 29 mg/dl.
    • The infant was transferred to the Neonatal Intensive Care Unit and placed on oxygen. Over the next 12 hours she had increasing CO 2 retention was intubated and placed on mechanical ventilation. Failing to improve with this therapy, she was transferred to the regional Level IV Intensive Care Nursery.
  • 8. Case Presentation - 2
    • The infant’s diagnosis was persistent pulmonary hypertension of the newborn (PPHN).
    • She stabilized in the ICN and did not require any additional aggressive intervention or treatment.
    • While in the ICN she developed hypertension, thought to be secondary to microemboli from the umbilical catheter. The hypertension was controlled with antihypertensive medication.
    • Evaluations to determine the etiology for the PPHN and hypertension were negative.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 9. Case Presentation - 3
    • Fourteen days after birth, the infant was discharged to home with her parents in markedly improved condition on antihypertensive medication.
    But what was the discharge state and condition her parents and two-year-old sister? © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 10. Case Presentation – The Family
    • Father is a senior web administrator for a major hospital with limited exposure to coping with hospital crises. Prior military experience helped him to focus on what he could do, step back and let others care for his daughter.
    • Sister is a very sensitive child who was confused that the baby did not come home from the hospital as promised. She found it difficult that mommy was in the hospital, both mommy and daddy were sad and didn’t want to play.
    • Mother is...
  • 11. Your Presenter – Dr. Kirsti A. Dyer
    • Physician
    • Trained in Internal Medicine
    • Experience in ICU’s
    • Advanced Training in Grief, Loss, Trauma and Bereavement
    • Experience in Hospice and End-of-Life Care
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 12. Findings from Our NICU Experience
    • I was a physician so I already knew about medicine and the ICU...for adults.
    • We had a term birth, not a preemie, so our was only a “sick” newborn with PPHN.
    • No Internet support groups could be found in 2002 for sick newborns.
    • There were no books to use with our 2-year-old.
    • My daughter was alive, so I couldn’t be grieving.
    • I discovered later that having a child in the NICU is a risk factor for the parents to experience depression and PTSD.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 13. Background – The NICU
    • The Dream vs. The Reality
    • NICU Admissions
    • NICU Hospitalizations
    • Impact on the Family
    • View of the NICU
    • Goals for the Presentation
    Image: My Girl. http://www.sxc.hu/photo/194015 . Used with Permission. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 14. The Dream
    • Life is what happens to you
    • while you're busy
    • making other plans.
    • John Lennon
    • "Beautiful Boy"
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 15. The Reality
    • ...I had no birth plan by design.
    • Who writes,
    • "Spinal anesthesia; turn over before its effect; have baby with a holler" -- and then, as the final birthing joy preference, "Proceed with great alarm to neo-natal intensive care?"
    • Marjorie Campbell
    Image: Bili Shades http://www.flickr.com/photos/mattandjanet/635259621 . Creative Commons. 2.0 Campbell M. 2008. Birth Plans and Crashing Markets. InsideCatholic.com
  • 16. NICU Admissions
    • Each year in the U.S. approximately 9 % of newborn babies are admitted to the NICU.
    • Most NICU Admissions are unplanned, unexpected and very often occur under emergent or emergency situations.
    • A NICU hospitalization requires that parents quickly adjust from the dream that they had for their baby’s birth to the new reality of a NICU admission.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 17. Giving Up Lost Dreams - Quote
    • Michael T. Hynan, Ph.D.
    • Former NICU Parent
    • Emeritus Professor of Clinical Psychology, University of Wisconsin
    Adjustment for the high-risk parent means making unacceptable losses acceptable... Giving up lost dreams and accepting what we do have is simply necessary... If we're going to resume living our lives as a family with any joy.
  • 18. NICU Hospitalizations are Stressful
    • NICU hospitalizations are stressful, overwhelming and exhausting events for all involved--the newborn, the new parents, new siblings, new grandparents and for family friends.
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 19. A NICU Baby – Impact on the Family
    • Having a newborn in the NICU makes for a very difficult time for the family.
    • Parents worry about their newborn’s well-being especially if they are unable to be at the hospital around the clock.
    • Decisions must be made about caring for older siblings, taking personal leave time or continuing to work.
    • Daily visits can be more complicated and harder to manage when baby and mother are in different hospitals or in another town.
  • 20. The NICU View to the Providers
    • The high-tech NICU environment is unfamiliar and intimidating for most parents. It is much like a being in a foreign country where they do not speak the language or know the customs.
    Image: NICU Machines. http://www.flickr.com/photos/mattandjanet/623116535 . Creative Commons. 2.0 © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 21. The NICU View to the Parents
    • The instruments, incubators, intravenous equipment, respirators, procedures, monitors, hospital jargon, lights, alarms, smells, and sounds can be terrifying for those unfamiliar with the neonatal intensive care setting.
    Image Source: Alien Incubator. http://www.flickr.com/photos/jurvetson/536728722. Creative Commons. 2.0 © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 22. Parents are Frightened & Dreading
    • FRIGHTENED
      • Fearful
      • Relieved
      • Inadequate/Incompetent
      • Grief-stricken
      • Hopeless and Helpless
      • Terrified and Tearful
      • Edgy
      • Nervous
      • Excitable
      • Depressed
    • DREADING
      • Despairing
      • Resentful
      • Exhausted
      • Anxious and Angry
      • Devastated
      • Irritable
      • Numb
      • Guilty, Grouchy, Grateful
    Dyer K. 2005. Identifying, Understanding and Working with Grieving Parents in the NICU, Part 1. Neonatal Network. 24 (3): 35 – 46. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 23. Goals for This Presentation
    • Present a different perspective of NICU loss which is traditionally thought of only as a death.
    • Share a personal perspective of NICU loss(es) and perspectives of several other professionals who were also NICU parents.
    • Help you to help other families using insights gained from our NICU experience and research.
    • Present the NICU through the eyes of a physician, grief educator and former NICU parent.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 24. Understanding Loss and Grief
    • Terms and Definitions
    • What is a Normal Grief Response?
    • The Body’s Response to Grief
    • Stages of Grief and Grieving
    • Tasks of Grief
    • Facts of Grief
    • Companioning the
    • Grieving
    • The Forgotten Grievers
  • 25. Terms and Definitions - 1
    • Loss - the condition of being deprived or bereaved of something or someone; it is the disappearance of something cherished.
    • Grief - the normal response to loss; grief is a complex, multifaceted response.
    • Grieving - the process of reconstructing meaning in a world that has been challenged or changed by loss.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 26. Terms and Definitions - 2
    • Bereavement - an objective state of having lost someone or something. Often used for losses resulting from a death.
    • Mourning - the process by which a person adapts the loss. It is considered to be the outward expression of the loss.
    • Traumatic Event - Any situation that overwhelms a person’s normal coping and problem-solving capabilities.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 27. What is a Grief Response?
    • Grief is a normal response to an abnormal life event.
    • A grieving person may experience physical and emotional symptoms along with intellectual, social & occupational responses.
    • Grieving people may also question their spiritual beliefs; many experience a crisis of faith as part of the grief response.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 28. The Body’s Response to Grief
    • A person grieving a loss may experience somatic (body) complaints that include: fatigue, aches, insomnia, gastrointestinal symptoms, nausea, chest pressure, palpitations, shortness of breath, back pain, stomach pains, anxiety and panic attack.
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 29. Stages of Grief and Grieving - 1
    • In 1969 the "Stages of Dying" were developed by Dr. Elisabeth Kubler-Ross as the stages or phases that a person who is dying goes through.
    • Over the years they were applied by others to represent the Stages of Grief.
    • In 2004 Elisabeth Kübler-Ross and David Kessler applied these stages of dying to the stages that a grieving person passes through.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 30. Stages of Grief and Grieving - 2
    • Stages of Grief – DABDA
      • D enial
      • A nger
      • B argaining
      • D epression
      • A cceptance
    • These stages should only be viewed as a tool to help frame and identify what a grieving person might be feeling, not absolutes what they should be feeling or experiencing.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 31. Tasks of Grief
    • In the 1980’s William Worden looked at Grief as a series of tasks that one works though.
    • Task One : To accept the reality of the loss.
    • Task Two : To work through the pain of grief.
    • Task Three : To adjust to a different type of environment.
    • Task Four : To emotionally relocate the loss (deceased) and move on with life.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 32. Key Facts About Grief
    • Pastor Bob Deits, author of Life After Loss , describes Four Key Facts About Grief:
      • The way out of grief is through it.
      • The very worst kind of grief is yours.
      • Grief is hard work.
      • Effective grief work is not done alone.
    • His book Life After Loss , has become a classic in the field of loss and grief. A 5 th edition is due to be published in May.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 33. Companioning the Grieving
    • Alan Wolfelt, Ph.D. talks of Companioning as:
    • Honoring the spirit.
    • Learning from others.
    • Being curious and being still.
    • Walking alongside.
    • Listening with the heart.
    • Bearing witness to the struggles of others.
    • Being present to their pain.
    • Respecting disorder and confusion rather than imposing order and logic.
    • Companioning is not about thinking you are responsible for finding the way out of the grief.
            • Bruce CA. 2007. Helping Patients, Families, Caregivers, and Physicians, in the Grieving Process. JAOA. 107(7): 33-40.
  • 34. Companioning with Perinatal Loss
    • This 2004 book by RN’s Jane Heustis and Marcia Jenkins is a guide for nurses, physicians, social workers, chaplains and other bedside caregivers.
    • The book has practical advice for helping families grieve after losing a child at birth.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 35. The Forgotten Grievers
    • Father
      • The focus is on how the mother is dealing with the grief.
      • Father may believe he needs to be “strong” for his wife and family.
    • Grandparents
      • Often overlooked as a grieving family member.
      • Doubly grieving - the grandchild and the impact on their own child.
    • Siblings
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 36. Loss and Grief in the NICU
    • Types of NICU Losses
    • Parents’ Narrative Responses
    • Acute Responses of NICU Parents – The 3 D’s
    • NICU Parents – Stages of Adaptation
    • Different Grievers, Different Responses
    • Intuitive Grievers
    • Instrumental Grievers
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 37. Types of NICU Losses
    • A NICU admission can result in many different types of losses for the NICU baby and for parents:
    • Loss of health, bodily function or organ .
    • Loss of original plans, hopes and dreams - of a normal pregnancy and delivery and healthy baby.
    • Loss of control and parenting role - turning care of their new child over to strangers.
    • Loss of a significant person - the child is in the hospital, not home with the parents.
    • Loss of life – the ultimate loss.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 38. Parent Response – Dr. Dyer
    • Dr. Kirsti A. Dyer
    The inability to do anything, to contribute to my daughter’s care medically as a physician or emotionally as a mother to hold her hand and pacify her was indescribably frustrating. How was I supposed to "turn off" my years of training as a physician-- being in the hospital, caring for patients and providing them comfort during a tormenting time? It was impossible.
  • 39. Parent Response – Dianne Maroney
    • Dianne Maroney, R.N.
    Imagine coming to visit him everyday, not as a nurse, but as a mom. During your time with him you wanted nothing more than to help him through the difficult periods, hold and dress him, change his diaper; but you were powerless. Every single thing that happened to him mattered! It mattered not only for the moment but for the future: his eyesight, his lung disease, his ability to walk…
  • 40. Parent Response – Dianne Maroney
    • There may have been brief moments where you were helpful, but the baby's life was truly in the hands of others.
    Image: All Hooked Up 1. http://www.sxc.hu/photo/807052 . Royalty Free Use. This lack of control is very intimidating to parents and is often interpreted as failure. Dianne Maroney, R.N.
  • 41. Acute Distress Response of Parents
    • Professor-NICU Parent Michael Hynan describes the acute distress response that NICU parents may experience as the “3 D’s:”
      • Derealization - trying to function in a strange, unreal, confusing NICU environment.
      • Denial - unwilling to accept what has happened.
      • Dissociation - failing to process information because of tremendous fear or shock.
    Hynan MT. 2001. Assisting the trembling hands that hold the tiny hands: Helping high-risk parents improve neonatal outcomes. Paper presented at the annual meeting of the National Perinatal Association, San Antonio, Texas. http:// www.uwm.edu/People//hynan/SanA.htm . © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 42. NICU Parents – Stages of Adaptation
    • Neonatologist Jane E. Brazy and colleagues describe the emotional stages of adaptation commonly experienced by NICU parents as:
    • Early Responses – Many of the typical grief responses to a loss: Shock, Denial, Grief, Sadness, Guilt and Anger .
    • Later Responses – Occur as the family adjusts and adapts to a new life. These include:
      • Reorganizing one’s life to include an NICU survivor.
      • Finding a new equilibrium.
      • Integrating the losses into a life forever changed.
    Meriter Hospital NICU Staff. Sick Newborn Health. Emotional Support > Stages of Adaptation. http:// www.meriter.com/living/sicknewborn/emotion/adaptation.htm
  • 43.
    • For years I had been telling parents, “Having a baby in the NICU is a roller coaster ride."
    • Although accurate, the analogy pales beside the reality.
    • The range of emotions is beyond imagining.
    • Dianne I. Maroney, RN
    • NICU Nurse & NICU Parent
    The NICU Roller Coaster Ride Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 44. Different Grief, Different Responses
    • People can have very different grieving styles; they can be Intuitive or Instrumental Grievers.
    • It can be very helpful for parents to realize that each of them may respond quite differently to the NICU admission and the resulting loss(es).
    • Parents and partners can be encourage to take time to grieve separately as well as together
    • Each person should be allowed to express grief in his or her own unique way and style.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 45. Intuitive or Instrumental Griever Image: Nothing is Hopeless. http://www.flickr.com/photos/christinasnyder/1046786100 . Creative Commons 2.0 Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 46. Intuitive (Emotional) Grievers
    • Intuitive grievers feel grief intensely and find expressing emotions by talking or crying helpful.
    • They are comfortable with expressing strong emotions, are sensitive to their feelings and aware of the feelings of others.
    • Sharing feelings about the loss and providing support to others can be very healing for the intuitive griever.
    • The intuitive grief style or emotional style is the one often associated with the typical female grief.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 47. Instrumental (Physical) Grievers
    • Instrumental grievers experience grief, but it is less intense or emotional and more physical than the intuitive griever.
    • Instrumental grievers like to think or problem-solve ways of coping with the experience.
    • For instrumental grievers the grief tends to be more private and hidden.
    • They may be reluctant to talk about their feelings.
    • The instrumental grief style or physical style is the one often associated with the male grief.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 48. Coping with Loss and Grief
    • TAKE CARE – Basics of Coping
    • Helpful Strategies for NICU Parents
    • Coping Suggestions for Intuitive and Instrumental Grievers
    • Grief Impacts Everyone
    • Brief Cultural Considerations of Grief
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 49. Parents learn a lot from their children about coping with life. Murial Spark Learning About Coping - Quote © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 50. TAKE CARE – Basics of Coping
    • Use TAKE CARE a reminder to focus on the basics:
    • T ime is needed to handle the grief.
    • A void alcohol and other medications.
    • K eep to some routine or schedule.
    • E at a balanced diet. Focus on healthy foods and water.
    • C onverse with others, especially those that have “been there” and “survived that.”
    • A rt can help keep the hands busy, whether journaling, building, crafting, knitting and others.
    • R est and Sleep are important to help the body heal.
    • E xercise to reduce stress and improve one’s mood.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 51. Helpful Strategies for NICU Parents
    • Initially - Minutes
      • Reassure parents what they are feeling is normal.
      • Listen to their story of loss; this provides comfort.
    • Early - Hours
      • Advise parents about available resources.
      • Share information that others have found helpful.
    • Later - Days to Weeks
      • If a parent remains distressed after several weeks or is profoundly affected, a referral to a professional grief counselor would be beneficial.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 52.
    • Intuitive Grievers
    • Openly express feelings
    • Allow time to experience inner pain
    • Can discuss the grief
    • Identify others as sources of support
    • Choose ways to express feelings - journal, crafts
    • May benefit from support groups.
    • Instrumental Grievers
    • Push aside feelings to cope with the present
    • Choose active or physical ways of expressing grief
    • Use humor or anger to express feelings
    • Seeks solitude to reflect and adapt to the loss.
    • Wants to only be around close friends/confidants.
    • May not do well with a support group.
    Coping Suggestions for Grievers Martin T. Doka K. 1999. Men Don’t Cry, Women Do: Transcending Gender Stereotypes in Grief. Routledge. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 53. Grief Impacts Everyone
    • The grief felt for the loss of a loved one or a loss associated with an important life change, occurs across all ages and cultures.
    • Different cultures have different behaviors, traditions and ceremonies to express grief.
    • Helping families cope with a loss also includes showing respect for their cultural heritage.
    • Learning about the family’s belief system and traditions can aid in helping them cope with the grieving process.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 54. Cultural Considerations of Grief - 1
    • Language – Determine the language used by the family. Use interpreters if needed.
    • Social Unit, Role of Elders – Decide if the NICU parent is part of a larger social unit and who makes the decisions for the group.
    • Family History – Consider the family’s history, possible prior discrimination and past experiences with access to, obtaining or receiving health care.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 55. Cultural Considerations of Grief - 2
    • Gender Differences – Find out how their culture regards men and women.
    • Spiritual and Religious Beliefs – Ask about the family’s religious/spiritual beliefs.
    • Expression of Grief – Determine how their culture expresses grief.
    • View of the Future – Find out the parent’s view of future events. Do they have a role in the future?
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 56. Strategies to Aid NICU Parents
    • Helpful Strategies from NICU Parents
    • Phrases to Use with NICU Parents
    • Managing Intense Emotions Despair/Anger
    • When to Advise Seeking
    • More Help
    Image: Holding Hands. http://www.sxc.hu/photo/207150 . Royalty Free Use. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 57. Helpful Strategies from NICU Parents
    • Ways to Care for Your Infant
      • Ask questions about your newborn.
      • Get involved with caring for your newborn.
      • Familiarize yourself with how the NICU works.
    • Ways to Care for Yourself
      • Learn about the common response to grief.
      • Take time for yourself - eat, rest and exercise.
      • Don’t let the pressures get you run down.
      • Learn relaxation techniques.
      • Give yourself permission to take time off.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 58. Phrases to Use with NICU Parents
    • What you can say when talking with NICU Parents:
      • I can’t imagine what you are going through. It must be unbearable.
      • I’m sad for you.
      • How are you doing/coping with all of this?
      • What has been the hardest part for you?
      • I don’t know why it happened.
      • What can I do for you?
      • How can I help?
      • I am here to listen.
      • What would be the most help to you right now?
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 59. Despair vs. Anger Image Sources: http://www.sxc.hu/photo/579286 and http://www.sxc.hu/photo/114127 Royalty Free Use. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 60. Managing Intense Emotions - 1
    • Recognize that NICU parents may experience confusing, overwhelming emotions like despair and anger that may be among the worst they have ever felt.
    • Some parents will cope by being angry. Anger allows the person to keep functioning. Living in despair and sorrow can overwhelm and incapacitate the person.
    • Listen to, acknowledge and validate the parent’s intense emotions.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 61. Managing Intense Emotions - 2
    • Don’t deny parents their anger and despair. Be there to support them through the NICU ordeal.
    • Know what resources are available e.g. quiet rooms, walking areas, counselors and clergy.
    • Realize that the causes of anger are often due to feeling frustrated, helpless, grieving or suffering; they are not (usually) due to the NICU staff.
    • Be aware that there are certain reasons and situations when a parent should be advised to seek additional professional help.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 62. When to Advise Seeking More Help
    • Any parent feeling or showing any of the following:
    • Prolonged agitation or anxiety
    • Depression or extreme hopelessness
    • Impaired daily activities or job function
    • Suicidal thoughts or ideation
    • Extreme physiologic/psychological reactions
    • Substantial guilt
    • Substance abuse – alcohol or drug use
    • Psychotic states
    • Uncontrolled rage
    • Prolonged, inhibited or absent grieving
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 63. Follow up - Aftercare
    • Aftercare
    • Who does Aftercare?
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 64. Aftercare
    • Follow up or Aftercare is monitoring the health and well being of the NICU family after the NICU admission.
    • NICU Parents are at an increased risk for experiencing:
      • Depression
      • Post Partum Depression
      • Post Traumatic Stress Disorder
      • Anxiety Disorders
      • Prolonged Grief Response
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 65. Who Does Aftercare?
    • Ideally any professional seeing a parent or a baby in follow up from the NICU hospitalization:
      • Pediatrician
      • Obstetricians/Gynecologist
      • Nurse Practitioner, Educator
      • Urgent Care Physician
      • Emergency Room Physician
      • Internist
      • Social Worker
      • Clergy
      • Mental Health/Counselor
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 66. Final Thoughts
    • For the NICU Parents
    • Finding or Making Meaning in Loss
    • For the NICU Providers
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 67. For NICU Parents: Have Faith
    • H ope.
    • A ccept life changes and challenges.
    • V erbalize questions, emotions and concerns.
    • E ngage with supportive friends/family.
    • F ortitude to endure the experience.
    • A daptability - to ride the waves.
    • I ncredible courage to survive day to day.
    • T rust in self, in child, in the team.
    • H ealing in whatever form it takes.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 68. A Definition of Faith
    • When you have come to the edge of all that you know &
    • And are about to step into the darkness of the unknown,
    • Faith is knowing one of two things will happen:
    • There will be something solid to stand on or
    • You will be taught to fly
    • Patrick Overton
    Image: Hiking in the Fog. http://www.sxc.hu/photo/35635 . Royalty Free Use. © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 69. Finding or Making Meaning in Loss
    • Finding or making meaning in the loss(es) is up to each person.
    • This is not something that can be done for the parent.
    • NICU providers can only companion a grieving parent on their journey though grief.
    • Sometimes there will be no meaning found in the loss. Some losses never make any sense.
    • Parents need to find a way to pick up the pieces and keep living a life changed by loss.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 70.
    • Professor Michael Hynan asks perinatal professionals to do something for high-risk parents…
    • … help us cope with our shattered dreams.
    Help Us Cope - Quote Image Source: Modified from Shattered Glass. http://www.sxc.hu/photo/76749 . Royalty Free Use. Hynan M. Helping Parents Cope with a High-Risk Birth. Terror, Grief, Impotence, and Anger. Presentation.
  • 71. For NICU Providers: Be Helpful
    • B elieve in the parents’ ability to survive this event.
    • E mpathize with NICU/ICN parents.
    • H ave hope.
    • E ncourage communication.
    • L oving thoughts and actions.
    • P atience with the healing and growing processes.
    • F ind inner strength - faith, spirituality.
    • U nderstand your partner, staff and baby.
    • L ighthearted. Remember that it is o.k. to find moments of laughter amidst the tears.
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 72. Hope is Important - Quote
    • Hope is important because it can make the present moment less difficult to bear.
    • If we believe that tomorrow will be better, we can bear a hardship today.
    • Thich Nhat Hanh
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 73. Resources
    • Hynan, M. 1996. Helping Parents Cope With A High-Risk Birth: Terror, Grief, Impotence, and Anger. Presentation. http://www.uwm.edu/~hynan/MINNAEP.html
    • Kubler-Ross E. Kessler D. On Grief and Grieving. New York, NY: Scribner. p. 7.
    • Dyer K. 2005. Identifying, Understanding and Working with Grieving Parents in the NICU, Part 1. Neonatal Network. 24 (3): 35 – 46.
    • Dyer K. 2005. Identifying, Understanding and Working with Grieving Parents in the NICU, Part 2. Neonatal Network. 24 (4): 27 – 39.
    • Bruce CA. 2007. Helping Patients, Families, Caregivers, and Physicians, in the Grieving Process. JAOA. 107(7): 33-40.
    • Maroney D. 1994. Helping Parents Survive the Emotional Roller Coaster Ride in the Newborn Intensive Care Nursery. Journal of Perinatology. Vol 14. No. 2. http://www.premature-infant.com/Articlehelping.html
    © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works
  • 74. Thank You
    • Email:
    • [email_address]
    • [email_address]
    • Presentation Online:
    • http://www.slideshare/dyerk
    • NICU eBook and NICU Blessing:
    • http://www.nicuparentsupport.org/free_nicu_ebook.html
    Image Source: Microsoft Clipart © Kirsti A. Dyer MD, MS, FT. 2009. Creative Commons 3.0 Attribution-Noncommercial-No Derivative Works