POST-TRAUMATIC STRESS IN THE NICU PARENTMARK BERGERON, MD, MPH

ASSOCIATE MEDICAL DIRECTOR, NICUASSOCIATES IN NEWBORN MEDICINE, PACHILDREN’S HOSPITALS AND CLINICS OF MINNESOTA ASSISTANT PROFESSOR, PEDIATRICSUNIVERSITY OF MINNESOTA MEDICAL SCHOOL

ADJUNCT ASSISTANT PROFESSOR, EPIDEMIOLOGY AND COMMUNITY HEALTHUNIVERSITY OF MINNESOTA SCHOOL OF PUBLIC HEALTH

National Children’s Study Speaker Series

SEPTEMBER 28, 2011

Objectives

Describe features by which parents in the NICU experiencing acute or post-traumatic stress may be recognized.

Describe effective and supportive communication strategies when encountering NICU families in crisis.

Identify resources available to NICU parents suffering from emotional trauma.

All slides are available on our website (www.newbornmed.com)

Disclosures

I will not be discussing any experimental or off-label uses for any therapies during this presentation.

I have no relevant financial relationships to disclose.

One last disclaimer…

I am by no means an expert on mental health or psychological trauma.

I am a neonatologist who bears witness to the stress the NICU environment exerts on babies, their parents, and families.

A little story…

What is trauma?

Trauma?

Trauma?

Trauma?

Yes! (For some.)

Trauma

“Experience of a threatening situation that goes beyond the bounds of the individual coping strategies and is accompanied by a sense of helplessness and defenseless abandonment.” (Yehuda, 2002).

Post-traumatic Stress Disorder (PTSD)(DSM-IV-TR)

A: Exposure to a traumatic event (a) loss of "physical integrity", or risk of serious injury or death, to self or others, and (b) an intense negative emotional response.

B: Persistent re-experiencing One or more of these must be present in the victim:

Flashback memories, recurring distressing dreams, subjective re-experiencing of the traumatic event(s), or intense negative psychological or physiological response to any objective or subjective reminder of the traumatic event(s).

C: Persistent avoidance and emotional numbing This involves a sufficient level of:

avoidance of stimuli associated with the trauma (thoughts, feelings, or talking about the event(s); avoidance of behaviors, places, or people that could lead to distressing memories;

inability to recall major parts of the trauma(s), or decreased involvement in significant life activities; decreased capacity to feel certain feelings; an expectation that one's future will be somehow constrained in ways not normal to other people.

D: Persistent symptoms of increased arousal not present before These are all physiological response issues, such as difficulty falling or staying asleep, or problems

with anger, concentration, or hypervigilence. E: Duration of symptoms for more than 1 month

If all other criteria are present, but 30 days have not elapsed, the individual is diagnosed with Acute Stress Disorder.

F. Significant impairment The symptoms reported must lead to "clinically significant distress or impairment" of major domains

of life activity, such as social relations, occupational activities, or other "important areas of functioning”

Fundamental question #1

Are all the diagnostic criteria necessary for the traumatic event(s) to be important to a parent’s ability to cope and function?

Fundamental question #2

How commonly are features of post-traumatic stress experienced by NICU parents?

Impact of NICU experience on parents

Sense of loss of personal control over events Especially related to infant survival

Loss of role as decision maker and care giver When is this regained?

discharge or beyond? Appearance of fragile or sickly infant Elevated distress leading to

Depression and anxiety ASD and PTSD

Emotional distress correlated with Infant maturity and complications (DeMeier, RL et al.

(1996))

Literature Review

Literature review

Search criteria: Primary research papers English Published in peer-reviewed journals Participants: parents/caregivers of premature infants Related to

Post-traumatic symptomatology following preterm birth Traumatic experiences of parents with premature infants

and/or Effectiveness of interventions/treatment of post-traumatic

symptomatology in parents following preterm birth

Wereszczak et al. (1997)

Objective: Study vividness of memories recalled by primary

caregivers after 3 years post preterm birth Method:

Qualitative: Semi-structured interviews of 44 mothers or grandmothers

Findings: At 3 years post-birth, caregivers report vivid

memories related to infant appearance and behavior, pain, procedures, illness severity, and uncertainty of outcomes

Pierrhumbert et al. (2003)

Objective: Examine effects of PTSD reactions of parents on sleeping

and eating problems of former preterm infants. Methods:

Perinatal PTSD questionnaire (PPQ, by DeMeir and Hynan et al, 1996) administered to 50 families (mothers and fathers) of former preterm infants and 25 families of full term infants at 18 months post-birth

Findings: 67% of mothers of preemies vs. 6% controls exhibited

clinical post-traumatic reactions at 18 mos. Intensity of those reactions correlated with

eating/sleeping problems of infants

Holditch-Davis et al. (2003)

Objective: Investigate post-traumatic stress responses of mothers with

premature infants Methods:

Mixed qualitative-quantitative design w/ semi-structured interview screening for PTS features at enrollment and at 6 months corrected age

30 mothers of high-risk preterm infants Findings:

All mothers had at least one PTS symptom 12 had two symptoms 16 had three symptoms Infant illness severity was significantly correlated with PTS

symptoms

Kersting et al. (2004)

Objective: Investigate PTS responses of mothers of premature

infants Methods:

Prospective longitudinal 50 mothers of premature infants assessed with Impact

of Events Scale (IES) (Horowitz et al. 1979) at 1-3 days, 14 days, 6 mos. and 14 mos. post-birth vs. 30 mothers of uncomplicated term infant births

Findings: Higher rates of traumatic symptoms in mothers of

preemies at all time points persisting without reduction at 14 mos. (p < .05)

Jotzo and Poets (2005)

Objective: Investigate effectiveness of a trauma-preventative

psychological intervention for parents of premature infants during hospitalization

Methods: Sequential control-group design 50 mothers of preemies enrolled: 25 in intervention

group/25 in control group Single session crisis intervention w/ psychologist w/

additional support throughout hospitalization when needed Assessment at discharge w/ Impact of Event Scale (IES)

Findings: 19 mothers in control group showed symptoms of clinical

trauma post-birth compared to 9 in the intervention group

Shaw et al. (2009)

“The Relationship Between Acute Stress Disorder and Posttraumatic Stress Disorder in the Neonatal Care Unit”

“For Parents in NICU, Trauma May Last”By Laurie Tarkan

August 25, 2009

Shaw et al. (2009)

Objective: Examine the prevalence of PTSD in parents 4

months after the birth of preterm or sick infants Examine the relationship between ASD

symptoms immediately following birth and PTSD later on

Methods: 18 parents completed completed a self-report

assessment of ASD at baseline Self-report assessment for PTSD and depression

completed at 4 months.

Shaw et al. (2009)

Findings: 33% of fathers and 9% of mothers met

criteria for PTSD ASD symptoms highly correlated with

development of PTSD and depression Fathers showed a more delayed onset in

PTSD symptoms, but were at greater risk by 4 months than mothers

Feeley et al. (2011)

Objective: examine how mothers’ PTSD symptoms affect

mother-infant interaction Methods:

self-report of 21 mothers of very low birthweight (<1500g) infants with (Perinatal PTSD Questionnaire (PPQ)) and Emotional Availability Scales at 6 months post discharge

Results: 24% mothers attained scores c/w PTSD and these

higher scores correlated with impaired effectiveness in structuring play with infant

Lefkowitz, et al. (2010)

Objective: assess the prevalence and correlates of ASD and

PTSD in mothers and fathers of NICU infants Methods:

86 mothers, 41 fathers self-reported ASD symptoms at enrollment and at PTSD +/- PPD via questionnaire at 30 days

Findings: 35% of mothers and 24% of fathers met ASD

criteria and 15% of mothers and 8% of fathers met PTSD criteria at 30 days. 39% of mothers met PPD criteria

Systematic review - findings

Research on the perspectives of NICU parents is limited

Studies had methodological limitations Small size, high attrition rates Single site Little diversity Time of assessment Mothers vs. fathers Lack of control for illness severity, length of stay, etc. No clinician-administered assessment tool for PTSD

Intervention studies are particularly lacking Limited information on effective strategies of support

What about fathers?

Mackely, et al. (2010)

Objective: evaluate presence of perceived stress in fathers of

preterm infants over time Methods:

self-report questionnaires (Parent Stressor Scale Infant Hospitalization (PSS:IH)) on DOL 7, 21, and 35 given to 35 fathers of preemies (less than 30 wks)

Results: elevated stress scores persist over time without

diminishing and do not correlate with demographic characteristics (marriage, education, insurance)

Future research

Standardized clinical scales along with open-ended interview schedules to obtain pre-post birth data

More long-term follow-up data needed MORE FATHERS!!! in sampling; more

racial diversity Infant illness severity should be recorded Attempt to correlate PTS symptoms with

depression Enhances recall bias of events?

Fundamental question #3

Given a lack of evidence, what strategies of support/intervention should be offered in the NICU and after discharge?

Step one: Recognize the feelings Terror Grief Impotence Depression Jealousy Anger

“Even the most well-adapted appearing couple with an infant in the NICU is undergoing the most stressful crisis of their lives”

Rachael, Social Worker

POST- NATAL STRESS INVENTORYDeMeier et al. (1996)

PLEASE CIRCLE "Y" IF YOU HAVE HAD ANY OF THESE EXPERIENCES SINCETHE BIRTH OF YOUR HIGH- RISK BABY. CIRCLE "Y" ONLY IF THE PARTICULAREXPERIENCE LASTED FOR MORE THAN 1 MONTH DURING THIS TIME. Y N 1. Did you have several bad dreams of giving birth or of your baby's hospital stay? Y N 2. Did you have several upsetting memories of giving birth or of your baby's hospital stay? Y N 3. Did you have any sudden feelings as though your baby's birth was happening again? Y N 4. Did you try to avoid thinking about childbirth or your baby's hospital stay? Y N 5. Did you avoid doing things which might bring up feelings you had about childbirth or your

baby's hospital stay (for example, not watching a TV show about babies)? Y N 6. Were you unable to remember parts of your baby's hospital stay? Y N 7. Did you lose interest in doing things you usually do? (For example, did you lose interest in

your work or in your family?) Y N 8. Did you feel alone and removed from other people? (For example, did you feel like no one

understood you?) Y N 9. Did it become more difficult for you to feel tenderness or love with others? Y N 10. Did you have unusual difficulty falling asleep or staying asleep? Y N 11. Were you more irritable or angry with others than usual? Y N 12. Did you have greater difficulties concentrating than before you gave birth? Y N 13. Did you feel more jumpy? (For example, did you feel more sensitive to noise, or more

easily startled?) Y N 14. Did you feel more guilt about the childbirth than you felt you should have?

Mothers of babies hospitalized in a NICU answer between 6 and 7 of the 14 items "Yes"; mothers of full-term, healthy infants answer 2.5 of the 14 items, "Yes"

Step two: Validate

Reassure parents that their emotions are a NORMAL response to severe stress Mothers and fathers are more alike than

different Be wary of stereotyping

Use communication that focuses on the individual parent’s experience and emotions Empathy Encourage verbalization

A unique parent perspective

“You are going to be disorganized and upset for months—some of us for years. We feel crazy, and we want to return to normal quickly. But that is the worst thing that we can try to do, because we can’t stop or reverse the natural, healing process of our emotional reactions without doing damage to ourselves. The only things that are normal for high-risk parents are terror, grief, impotence, and anger… And experiencing these lousy emotions are signs that we parents are doing well, not poorly.”

A unique perspective

“… the medical staff can do wonderful things to help angry parents, even though I know that angry parents are one of the most troublesome things for you. It is natural for you to want to avoid angry parents, but please stay with us. When we erupt and explode, don’t go away, even though you have pressing obligations. Stay there, nod your heads, and let our anger blow past you like the desert winds. Then, in the next day or two, when you sense that we might be more rational, come back to us and re-establish communications. Go over what we were mad about, and show us that you believe that our feelings are important to you. This is crucial. Many times, trust is the only good feeling a parent has. If that trust ever disappears, then that is the worst crash on the roller coaster for parents.”

Michael Hynan, Ph.D. and parent of ex-preemie

Creating a supportive environment

Continuity of care i.e. primary nurses

Family-centered care practices Bedside rounding with families On-site social workers Parent-to-parent group

Advisor/leader (paid vs. volunteer) Seamless transition at discharge to home

Engage parents in developmental care early Encourage parenting competencies

Home nurse visits Medical Home model NICU Follow-up clinic

Supporting a family: where to refer?

Hospital social worker Other resources

Pregnancy and Postpartum Support Minnesota (PPSM) http://www.pregnancypostpartumsupportmn.co

m mental health & perinatal practitioners, service

organizations, and mother volunteers offering emotional support and treatment to Minnesota families through the perinatal years

Perinatal Mental Health Resource List, 4th Ed.

Conclusion

NICU hospitalizations generate stressful experiences for most, if not all, parents

Many will exert signs of acute and post-traumatic stress Manifestations and likely effects vary

among individuals Future research needed to better

understand the nature of ASD and PTSD in NICU parents and how we can best support these families

References Hoditch-Davis, D; Bartlet, TR; Blickman, AL; Shandor Miles, M. (2003). Posttraumatic stress symptoms in

mothers of premature infants. JOGNN, 32:161-171. DeMeier, RL; Hynan, MT; Harris, HB; et al. (1996). Perinatal stressors as predictors of symptoms of

posttraumatic stress in mothers of infants at high risk. Journal of Perinatology, 16:276-280. Feeley, N; Zelkowitz, P; Cormier, C; Charbonneau, L; Lacroix, A. (2011). Posttraumatic stress among mothers

of very low birthweight infants at 6 months after discharge from the neonatal intensive care unit. Applied Nursing Research, 24:114-117.

Jutzo, M; Poets, CF. (2005). Helping parents cope with the trauma of premature birth: An evaluation of a trauma-preventive psychological intervention. Pediatrics, 115:915-919.

Kersting, A; Dorsch, M; Wesselmann, U, et al. (2004). Maternal posttraumatic stress response after the birth of a very low-birth-weight infant. Journal of Psychosomatic Research, 57:473-476.

Lefkowitz, DS; Baxt, C; Evans, JR. (2010). Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). J Clin Psychol Med Settings, 17:230-237.

Mackely, AB; Locke RG; Spear, ML; Joseph, R. (2010). Forgotten parent: NICU paternal emotional response. Advances in Neonatal Nursing, 10:200-203.

Pierrhumbert, B; Nicole A; Muller-Nix, C; Forcada-Guex, M; Ansermet, F. (2005). Parental post-traumatic reactions after premature birth: Implications for sleeping and eating problems in the infant. Archives of Disease in Childhood and Fetal and Neonatal Education, 88:400-404.

Shaw, RJ; Bernard, RS; DeBlois, T; Ikuta, LM; Ginzburg, K; Koopman, C. (2009). The Relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics, 50:131-137.

Wereszczak, J; Shandor Miles, M; Holditch-Davis, D. (1997). Maternal recall of the neonatal intensive care unit. Neonatal Network, 16:33-40.

Yehuda, R. (2002). Clinical relevance of biologic findings in PTSD. Psychiatric Quarterly, 73:23-33.

References

With much gratitude to Michael Hynan, Ph.D., University of Wisconsin – Milwaukee for his generous sharing of his insight, personal stories and research as a clinical psychologist and parent of a former NICU patient. (https://pantherfile.uwm.edu/hynan/www/)

Discussion