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

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

36TH ANNUAL MINNESOTA PERINATAL ORGANIZATION CONFERENCESEPTEMBER 23, 2010

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.

Objectives

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

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

Identify three resources available to NICU families suffering from emotional trauma.

Format

Review what’s known about NICU parents and post-traumatic stress

Discuss future areas of potential research in this area

Review supportive communication strategies Discuss resources available to NICU parents and

former NICU parents (especially local resources) Open discussion of personal experiences

(poignant examples, successes, community needs, etc.)

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

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.

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 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

“Post Traumatic Symptomatology in Parents with Premature Infants: A Systematic Review of the Literature” Karatzias A, et al. Journal of Prenatal and Perinatal Psychology and Health (2007)

Analyzed studies quantitative, qualitative, and mixed quantitative qualitative designs

Systematic review

Search criteria 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

Systematic review

Five studies identified All published after 1997 Primary research papers

No reviews or meta-analyses

Wereszczak et al. (1997)

Objective: Study vividness of memories primary

caregivers recall 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 Quinnell and

Hynan, 1999) administered to 50 families (mothers and fathers) of former preterm infants and 25 families of full term infants at enrollment and at 6 mos. CGA

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

clinical post-traumatic reactions at 6 mos past expected due date

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 associated 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 Single session crisis intervention w/ psychologist w/

additional support throughout hospitalization when needed

25 mothers in intervention group/25 in control group Assessment at discharge w/ IES

Findings: 19 mothers in control group showed symptoms of

clinical trauma post-birth compared to 9 in the intervention group

Systematic review

Research on the perspectives of NICU parents is limited

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

Intervention studies are particularly lacking Limited information on effective strategies of

support

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

August 25, 2009

Shaw et al. (2009)

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

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 PTSD and ASD symptoms immediately following birth

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

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 bias recall 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

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

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 discharge to home transition

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 hospitalization generate a traumatic 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

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.

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.

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. (https://pantherfile.uwm.edu/hynan/www/)

Discussion