1. Stress in the NICU: Impact on Families and Infants Susan Blackburn RN, PhD, FAAN Department of Family and Child Nursing University of Washington Seattle, Washington

2. Challenges to Parenting in the NICU  Separation and distance  Stress, anxiety, loss, fatigue  Infant appearance and behavior  Nursery appearance and policies  Lack of privacy and control  Staff-parent interactions  Financial concerns  Family issues

3. Parental Feelings After Preterm Birth  Grief  Fear  Hope  Anger  Helplessness, impotence  Thinking about baby continually  Loss of control  Loss of role as decision maker and caregiver  Unsure how to parent in NICU  Anxiety  Happiness  Shock  Restlessness  Emptiness  Depression  Frustration  Distress  Stress disorders

4. Difficult Times in the NICU During Antepartum Care During Antepartum Care Still on L&D, unable to see baby Still on L&D, unable to see baby First visit to the NICU First visit to the NICU Being discharged without baby Being discharged without baby Difficult news Difficult news Transitions Transitions Death of baby on unit Death of baby on unit Discharge home with baby Discharge home with baby (March of Dimes NICU Family Support)

5. Parent Needs in the NICU (Cleveland, 2008; Hurst, 2001)  Accurate information and inclusion in the infant's care  Vigilant watching over and protection of the infant  Contact with the infant  Being positively perceived by the nursery staff  Individualized care  Therapeutic relationship with staff

6. Psychological Stress in NICU Parents  Parents of infants in the NICU are at increased risk of depression and stress disorders both during the infant’s hospitalization and in the postdischarge period Acute stress and distress Acute stress and distress Posttraumatic stress disorder Posttraumatic stress disorder Anxiety Anxiety Depression/postpartum mood disorders Depression/postpartum mood disorders (Beck, 2003; Groer et al, 2002; Howland et al, 2011; Padovani et al, 2009; Poehlmann et al, 2009; Shaw et al, 2009)

7. Stress and Distress Stress: “...a physical, chemical, or emotional factor that causes bodily or mental tension and may be recognized as a factor in disease causation.” (Merriam Webster's Collegiate Dictionary) Stress: “...a physical, chemical, or emotional factor that causes bodily or mental tension and may be recognized as a factor in disease causation.” (Merriam Webster's Collegiate Dictionary) Distress: adverse effects seen when a stress causing event has exceeded the organisms limits of stress tolerance Distress: adverse effects seen when a stress causing event has exceeded the organisms limits of stress tolerance

8. Consequences of Stress  During pregnancy = increase risk of preterm labor and birth  Postpartum: early stressful experiences can subsequently affect parental attitudes, behaviors and care giving relationship  Long term health risks for parents and infants

9. Acute Stress Disorder  Significant stressor  Initial "daze“ and disorientation, followed by symptoms such as depression, anxiety, anger, despair, over activity, withdrawal  Usually diminishes after 24–48 hours

10. Critical Features of Postpartum Mood Disorders (Siegel, Gardner & Dickey, 2011)  Over concern for the baby or excessive anxiety over the infant’s health  Feelings of guilt, inadequacy, worthlessness, failure at mother hood  Fear of losing control or “going crazy”  Lack of interest in the baby  Fear of harming the baby  Obsession

11. Post-traumatic Stress Disorder (DSM-IV-TR)  Exposure to traumatic event  Re-experiencing the event through intrusive thoughts  Avoidance of stimuli that represent the event  Increased arousal after the event that was not present before  Duration of >1 month  Significant impairment in social or other functioning  Reported among parents of VLBW

12. Post Traumatic Stress and NICU Families  Wereszczak et al. (1997) Qualitative study of vividness of memories primary caregivers recall 3 years post preterm birth (n = 44) Qualitative study of vividness of memories primary caregivers recall 3 years post preterm birth (n = 44) Vivid memories related to infant appearance and behavior, pain, procedures, illness severity, and uncertainty of outcomes Vivid memories related to infant appearance and behavior, pain, procedures, illness severity, and uncertainty of outcomes  Holditch-Davis et al (2003) PTSD questionnaire and interview of 30 PT mothers at 6 mo corrected age PTSD questionnaire and interview of 30 PT mothers at 6 mo corrected age All had at least 1 PTSD symptom, 12 had 2, 16 had 3 All had at least 1 PTSD symptom, 12 had 2, 16 had 3 PTSD symptoms associated with infant illness severity PTSD symptoms associated with infant illness severity

13. Post Traumatic Stress and NICU Families  Pierrhumbert et al. (2003) PTSD questionnaire to parents (50 PT, 25 FT) at 6 mo PTSD questionnaire to parents (50 PT, 25 FT) at 6 mo 67% of mothers of preemies vs. 6% controls exhibited clinical post-traumatic reactions 67% of mothers of preemies vs. 6% controls exhibited clinical post-traumatic reactions Intensity correlated with eating/sleeping problems of infants Intensity correlated with eating/sleeping problems of infants  Kersting et al. (2004) PTS responses (scale) in 50 PT vs 30 FT mothers at 5 times from birth to 14 months PTS responses (scale) in 50 PT vs 30 FT mothers at 5 times from birth to 14 months Higher rates and similar intensity of traumatic symptoms in PT mothers at all time points to 14 months Higher rates and similar intensity of traumatic symptoms in PT mothers at all time points to 14 months

14. Post Traumatic Stress and NICU Families  Shaw et al. (2009) Prevalence of ASD (birth) and PTSD 4 months after the birth of PT or sick NB (n = 18) Prevalence of ASD (birth) and PTSD 4 months after the birth of PT or sick NB (n = 18) 33% of fathers, 9% of mothers met criteria for PTSD 33% of fathers, 9% of mothers met criteria for PTSD ASD symptoms correlated with PTSD and depression ASD symptoms correlated with PTSD and depression Fathers: PTSD more delayed onset, greater risk by 4 mo Fathers: PTSD more delayed onset, greater risk by 4 mo  Vanderbilt (2009) Assessment of postpartum acute PTS and depression in 59 NICU & 60 well NB mothers in first week after birth Assessment of postpartum acute PTS and depression in 59 NICU & 60 well NB mothers in first week after birth NICU mothers show increased symptoms of acute PTS stress and depression. 23% NICU and 3% well NB reached severity criteria for acute stress disorder NICU mothers show increased symptoms of acute PTS stress and depression. 23% NICU and 3% well NB reached severity criteria for acute stress disorder

15. Post Traumatic Stress and NICU Families  Feeley et al (2011) Maternal PTSD symptoms, characteristics of mother and her infant, and effect on mother-infant interaction (n = 21) Maternal PTSD symptoms, characteristics of mother and her infant, and effect on mother-infant interaction (n = 21) 23% scored in the clinical range on PTSD measure 23% scored in the clinical range on PTSD measure Infant illness related to mothers' PTSD symptoms Infant illness related to mothers' PTSD symptoms Greater the PTSD symptoms. The less sensitive and effective at structuring interaction with their infant Greater the PTSD symptoms. The less sensitive and effective at structuring interaction with their infant

16. Enhancing Parenting and Reducing Stress  Emotional support  Supportive environment  Understanding infant behavior and characteristics  Involvement in caregiving and decision making  Knowledge, sensitivity, skills  Skin to skin holding (kangaroo care)

17. Parent Emotional Support  Build trust and emotional safety  Validate feelings/reassure emotions are normal response  Help feel respected, valued, successful  Communication  Assist with problem solving techniques  Review experiences  Assist in identifying and using support  Recognize and support coping strategies

18. Parent Emotional Support (O’Donnell, 1986)  Help parents understand their responses and their partner’s responses  Provide information and empathy  Assist in interpreting information  Respond to all questions fully and openly  Support family from within their perspective  Respect responses  Repeat explanations  Flexibility and availability to talk with family when they are ready

19. Supportive Environment  Family centered care  Continuity of care  Parent to parent support  Partnering with parents  Transition to home

20. Family-Centered Care  Supports development of parental competence  Focuses on:  Identifying and building on individual and family strengths  Partnering and collaborating with parents  Empowering families so they can care for their infant in the NICU and at home (Griffin & Abraham, 2006; IFCC, 1998; Saunders et al., 2003)

21. Key Components of Parent Support  Parents are respected and valued members of the health care team  Parents and health professionals form effective partnerships  The focus is on parental strengths; parents define their own needs and priorities (Hurst, 2001, 2006; Cooper et al, 2007; Gooding, 2008)

22. Key Components of Parent Support All parents can give and receive; teach and learn; care and be cared for All parents can give and receive; teach and learn; care and be cared for Parents are viewed in the context of their families, neighborhoods or communities Parents are viewed in the context of their families, neighborhoods or communities Parent support services are accessible Parent support services are accessible Information shared by parents is confidential Information shared by parents is confidential (Hurst, 2001, 2006; Cooper et al, 2007; Gooding, 2008)

23. Promoting Parenting in the NICU Provide support to parents Provide support to parents Help parents identify and use support systems Help parents identify and use support systems Collaborate with families in planning and providing care Collaborate with families in planning and providing care Enhance the role of parents as advocates for their infant Enhance the role of parents as advocates for their infant Empower parents to care for their infant, participate in rounds, ask questions, meet with the care team, etc. Empower parents to care for their infant, participate in rounds, ask questions, meet with the care team, etc.

24. Empowerment To equip or supply with an ability; enable To equip or supply with an ability; enable Helping process Helping process Caring presence building on parents strengths Caring presence building on parents strengths Active participation with increasing control Active participation with increasing control Sharing of knowledge and skills Sharing of knowledge and skills Partnership with mutual decisions, choices and responsibility Partnership with mutual decisions, choices and responsibility Enabling or transferring power to the other Enabling or transferring power to the other

25. Family Support and Empowerment  Partnership between NICU care provider and parent/family = interdependency and collaboration (Gibbins et al, 2008; Lawhon, 1997)  “Unique and vital contribution of both the family and the care provider to the infant’s health and well being” (Gibbins et al, 2008)  Creating Opportunities for Parent Empowerment (COPE) (Melynk et al, 2006)

26. Kangaroo Care Parenting Effects (Dodd, 2004; Feldman, 2004; Feldman & Eidelman, 2003; Ludington-Hoe et al, 2008)  Skin-to-skin contact between infant and parent provides high levels of comfort to parents (Cooper et al, 2007)  Benefits to attachment Contingent stimulation Contingent stimulation Sensory environment of breast Sensory environment of breast  Parental Reduced anxiety, stress Reduced anxiety, stress Increased parental bonding and satisfaction Increased parental bonding and satisfaction Parent comfort Parent comfort

27. Attachment Behaviors of Parents of NICU Infants (Gale & Franck, 1998)  Eagerly performs caregiving activities  Expresses pleasure in meeting infant needs  Able to comfort infant when distressed  Brings toys, other items to personalize infant’s space  Makes personalized observations about infant

28.  Offers suggestions and makes demands for personalized care  Demonstrates advocacy behaviors  Feels knows and can care for infant better than anyone else  Demonstrates consistent visiting and/or calling patterns  Questions focus on total infants, not only physiological parameters Attachment Behaviors of Parents of NICU Infants (Gale & Franck, 1998

29. Goal “Support for ongoing development of parental competence is the goal of neonatal nursing care, which in essence displaces the role of the professional and encourages parents, through mutual interactive communication, to support the infant in developing increasing differentiation and functioning.” (Lawhon, 1997, p.51) “Support for ongoing development of parental competence is the goal of neonatal nursing care, which in essence displaces the role of the professional and encourages parents, through mutual interactive communication, to support the infant in developing increasing differentiation and functioning.” (Lawhon, 1997, p.51)

30. Family Support  Goals for promoting parenting and reducing stress in the NICU Collaboration Collaboration Advocacy Advocacy Role promotion Role promotion Empowerment Empowerment Support Support

31. March of Dimes Resources for Parents NICU Family Support http://www.marchofdimes.com/baby/inthenicu_ program.html http://www.marchofdimes.com/baby/inthenicu_ program.html http://www.marchofdimes.com/baby/inthenicu_ program.html Share Your Story online community www.shareyourstory.org www.shareyourstory.org Understanding Your Premature Infant http://www.marchofdimes.com/modpreemie/pr eemie.html http://www.marchofdimes.com/modpreemie/pr eemie.html http://www.marchofdimes.com/modpreemie/pr eemie.html

32. This Continuing Professional Education Program is generously supported by a March of Dimes Grant from an Anonymous Donor  For additional online resources on preterm birth, please visit: 1. PrematurityPrevention.org Online source of information on prematurity. The PPRC is primarily for professional use and includes current information on interventions, research, advocacy, professional education, global initiatives, teaching tools and resources to use with patients. 2. Elimination of Non-medically Indicated Elective Deliveries Before 39 Weeks Gestational Age. Outlines successful initiatives and sample implementation plan to reduce elective deliveries before 39 weeks at hospital, health system and statewide levels. Free download: prematurityprevention.org or purchase: marchofdimes.com/catalog 3. Toward Improving the Outcome of Pregnancy III. Explores the elements that are essential to improving quality, safety and performance across the continuum of perinatal care. prematurityprevention.org 4. Preterm Labor Assessment Toolkit – Provides standardized protocols for assessing patients in preterm labor. prematurityprevention.org 5. Preterm Labor: Prevention and Nursing Management Nursing Module – Discusses nursing management of women presenting in preterm labor. 3.9 Contact Hours available for RNs. marchofdimes.com/nursing 

33. Selected References  Ashton, M, Meagher-Stewart, D, et al. (2006). Family health nursing and empowering relationships. Pediatr Nurs, 32, 61-67  Cooper, L.G., Gooding, J.S., et al. (2007). Impact of a Family-Centered Care Initiative on NICU Care, Staff and Families. Journal of Perinatology, 27, S32-S37.  Feeley, N., Zelkowitz, P. et al. (2011). Posttraumatic stress among mothers of very low birthweight infants at 6 months after discharge from the neonatal intensive care unit. Appl Nurs Res, 24, 114-117.  Feldman, R, Eidelman, A, et al. (2002). A comparison of skin-to-skin (kangaroo) and traditional care, parenting outcomes and preterm infant development. Pediatrics,, 110-16-26.

34. Selected References  Gibbins, S., et al. (2008). The universe of developmental care, a new conceptual model for application in the neonatal intensive care unit. Adv Neonat Care, 8, 141- 148.  Gooding, J.S., Cooper, L.G., et al. (2011). Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol, 35, 20- 28.  Howland, L.C., Pickler, R.H., et al. (2011). Exploring biobehavioral outcomes in mothers of preterm infants. Am J Matern Child Nurs, 36, 91-97  Lawhon, g. (1997). Proving developmentally supportive care in the newborn intensive care unit: An evolving challenge. J Perinat Neonat Nurs, 10 (4), 48-61.

35. Selected Resources  Lefkowitz, D.S., Baxt, C. & Evans, J.R. (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.  Ludington-hoe, S., Morgan, K. & Abouelfettoh, A. (2008). A clinical guideline for implementation of kangaroo care with premature infants of 30 or more weeks post-menstrual age. Adv Neonat Care, 8(Supplement),S3-S23.  Melnyk, B.M., et al. (2006). Reducing premature infants' length of stay and improving parents' mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics, 118, e1414-e1427.

36. Selected Resources  Moore, K.A., et al. (2003). Implementing potentially better practices for improving family-centered care in neonatal intensive care units: successes and challenges. Pediatrics, 111(4 Pt 2), e450-460.  Shaw, R.J., et al. (2009). The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics, 50, 131- 137.  Sweeney, M.M. (1997). The value of a family-centered approach in the NICU and PICU: one family's perspective. Pediatric Nursing, 23, 64-66.  Voos, K.C., et al. (2011). Effects of implementing family- centered rounds (FCRs) in a neonatal intensive care unit (NICU). J Matern Fetal Neonatal Med, 24, 1-4.