Thank you to our 2016 Grantors and Sponsors

NICU Consortium Educational Welcome Meeting/Webinar Agenda July 27, 2016 9:00 am Welcome, Announcements 9:15 am "From the NICU to the Home: Mothers' Experiences" Paulina Erices, IBCLC Jennifer Harrison, MS, CLE, CIMI 10:15 am Break 10:30 am Smooth Way Home Update Jennifer Harrison, MS, CLE, CIMI Smooth Way Home 11:30 am Adjourn 11:35 am NICU Consortium Steering Committee To 12:30 pm You may join us if you wish Thank you to our 2016 Grantors and Sponsors Newborn Hope for their support of the Safe Sleep Going Home Program MedImmune Advocacy - for the Community Connections Transitioning Parents from the NICU to the Home and Community Grant to learn about parents experiences and recommendations for transitioning home from the NICU Coram Exhibitor Support for the Supporting the Development of Infant Feeding from the NICU to Home When G-tube Feedings Are Necessary HCP Colorado Department of Public Health and Environment, Program for Children with Special Health Care Needs for their continued support of the NICU Consortium Educational Meetings /Webinar If you know of an organization or business that would be interested in supporting the efforts of the NICU Consortium and Special Kids, Special Care please have them contact Barbara Deloian at specialcare@sk-sc.org 1

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From the NICU to Home: Mother s Experiences Paulina Erices, IBCLC Jennifer Harrison, MS, CLE, CIMI Background Community Connections Grant. Needs assessment to identify and prioritize SKSC services and create recommendations for transition from NICU to home. 27 interviews. Parents were refereed by providers, community supports, friends, or self referred. No disclosures. 3

Objectives To identify the themes presented by mothers about their experience transitioning from the NICU to the home. To investigate the protective factors in the motherbaby relationship as they move from the NICU to the home. To develop effective strategies to support families as they transition from the NICU to the home. Mothers background 8 Latinas 2 Asian 1 Black 22 White 14 stayed home 8 < PT 2 part time 3 full time 4 single 23 married. 50 pregnancies 2 twins 1 triplets Several loses 11 college education 6 postgraduate 3 technical 1 HS 6 <HS Born between 25 and 39 weeks gestation Hospital stay from 8-111 days Home from 7 days to almost 3 years 13 were first babies 4

Interview Guide Open-ended questions & Likert Scales Questions about NICU experience & home experience Questions about physical health and mental health of all family members What worked & what didn t? Access to community resources What you wish you had known or had received? What are the most effective strategies to support families as they transition from the NICU to the home? 5

3 Main Themes 1. Knowledge and participation in decisions concerning the health/development of their babies as a way to establish their parental role. 2. Need for support during the transition period after NICU discharge. 3. Maternal wellbeing, including feelings of isolation and changes in lifestyle. Knowledge and participation in decisions concerning the health/development of their babies as a way to establish their parental role 6

Knowledge and establishing parental role The rollercoaster experience The ups and downs are constant, one day they tell you they (the babies) are progressing and next day they have developed complications you never know what to expect (Mother of triplets born at 32 weeks) Knowledge and establishing parenta Mothers sought detailed information about the health of their babies and demanded to be part of their care. My aunt is a NICU nurse in another state, so I took pictures of the monitors from my phone every day, morning and night, for her to help me read what they meant. I didn t trust the nurses as much as [I trusted] my aunt (mom of a baby born at 34 weeks gestation) Understanding their babies condition brings comfort to parents; additionally, being considered in the decision-making affirms their role as caregivers. In the other NICU, we were present at hand-off. It was important to me to be part of that because they would ask me too what I saw; I was part of it. Then we transferred and I was asked to leave [during hand-off]. It was shocking to me (mom of baby born at 28 weeks gestation, who was transferred to a different NICU for a month before going home). 7

Knowledge and establishing parental rol Spanish speaking mothers developed other strategies to establish their parental role. When the nurses came to see him there was nothing for them to do. I had taken his temperature, fed him, changed him. The nurse would just look and check that everything was OK (mom of a baby born at 32 weeks gestation). Knowledge and establishing parental ro The altered parental role was perceived to be the most stressful aspect of having an infant in the NICU (Obeidat, Bond & Callister, 2009). Preterm birth negatively impacts the attachment relationship between mother and baby and on maternal responsiveness to the infant (Evans, Whittingham & Boyd, 2012). The effect of the lack of understanding of infant cues (due to separation or baby s development) disturbs the bond, leading parents to label their babies as difficult. Additionally, the vulnerability of parents to suffer mental health issues leads to increased negative outcomes for their babies (Craig et al, 2015). Research supports the inclusion of families as true collaborators in the care of their children in the NICU (Hall et al (2015b). Research shows that it is not only positive to facilitate the transition home, but it has multiple positive benefits such as mothers showed lower levels of stress, babies gained more weight, babies were discharged earlier, and breastfed more often and for longer (Craig et al, 2015). 8

Knowledge and establishing parental role Not all parents described the NICU as stressful by all families. beautiful time multiple pregnancy losses in the past and had undergone years of fertility treatment. miracle babies, even if experiencing serious medical conditions, brought intense happiness. those parents had prepared for an early delivery, had visited the NICU, and had a strong relationship with their medical team. reassuring presence of the medical team But, what happens when they get home? Knowledge and establishing paren Giving care to a newborn is a fundamental maternal attachment behavior, and one which is disrupted within the NICU environment (Obeidat et al (2009); however, parents can: Prepare for the NICU experience when known high risk. Be included in the care of their baby. Ask many questions and receive complete answers. Take charge of their baby s care, if possible. Breastfeed or pump milk for their baby. 9

Support after NICU Discharge Support after NICU Discharge Specific aspects of the NICU experience exacerbate stress for parents, such as the physical environment, the baby s physical appearance or behavior, staff-parent interactions, and alterations in the parental role. (Obeidat et al., 2007). In our interviews, the most mentioned caused of stress during and after the NICU were: (1) babies appearance (2) staff-parent interactions (3) life style changes (after going home). 10

Life-Style changes Support after NICU Discharge Difficulties providing care at home increased their feelings of isolation. They felt tired and hopeless. My friends and family didn t know what to do, how to help, so they stayed away, it would have been nice if someone had stopped for a cup of tea, just to check in. Everything changed since then, all of my closest friends now are moms who I have met after she was born (mother of a baby born at 34 weeks gestation). Most mothers felt more tired, got less sleep, and had more responsibilities than they had anticipated. Additionally, about a quarter of the mothers in study reported eating less and needing to make major adjustments to their fun/social activities to Life-Style changes Support after NICU Discharge Mothers described a clear shift in their social life, as babies routines and health concerns became a priority. Stopped or reduced their work hours, which reduced their social network in addition to increasing financial stress. Latino American mothers did not describe changes in eating or social life, as they had friends or family members visiting and taking care of them, which may be explained by their cultural traditions. 11

Changes in social network. Support after NICU Discharge Mothers helped each other while at the NICU. A Spanish speaking mother described how she got permission to care for her friend s baby when her friend was not there. One day her baby cried for over 3 hours. They were letting him cry. I couldn t help it and I went to hold him, but I got in trouble. After that, we got permission to take care of each other s babies, so they wouldn t be crying if one of us was not there. Other mothers mentioned the activities organized at the hospital, like a scrapbooking class, as a source of support. They shared experiences meeting other families in the NICU, or the breastfeeding groups they joined after they moved home. When a problem arise, I call them, even if they also don t know what to do, at least they get it (mother of a baby born at 27 weeks gestation) Support after NICU Discharge Peer-support Identification as a NICU MOM Mothers rank peer-support as the most important factor in developing a maternal role. overcome isolation allow mothers to get reassurance, guidance and support developing their identity as mothers. Breastfeeding peer counselors as a source of information, encouragement, and support because family and friends could not relate to their situation (Rossman, Green and Meyer, 2015). Psychosocial support is essential to mitigate the risks factors for mothers developing postpartum depression, anxiety disorder, and post-traumatic stress disorder. The shared experienced of peers allows for acceptance and provides foundations for the development of the caregiver role (Hall et al. (2015a). 12

Maternal Mental Health Maternal Mental Health How are you? Mothers with known high risk pregnancy were aware of vulnerability. None of the mothers recall to have been screened for PPD. They had suffered pregnancy lost, but not pregnancy loss counseling. None of them were receiving counseling services. Two of them mentioned that at about a year of their babies age, they realized they needed help. 13

Going home! Happy and relieved, but also not prepared. I wish someone had told me how to know if they were too hot, or too cold what to do with a baby, do you bathe them every day? What time to put them to sleep? What to look for in case something goes wrong! I had not thought about any of that (mother of triplets born at 32 weeks gestation). Readiness to go home. Parents perception of readiness is highly impacted by the cues from the baby and the NICU staff (Burhnham, Feeley and Sherrand, 2013). Half of the mothers interviewed had difficulties getting continuation of care. These situations were particularly unsettling for the mothers, while at the same time, caused a strong sense of maternal role attainment when successfully resolved. Most mothers mentioned the lactation consultant at the hospital as their main source of support and information, even when not nursing. The Spanish speaking mothers had many questions about their baby s health and development, even at the time of the interview. I received a piece of paper as her discharge document. I was expecting a lot more information specific to my baby. It seemed that they just unplugged the monitors and said: grab your baby! (mother of a baby born at 27 weeks gestation). 14

Protective factors Being prepared Family. Background. Taking charge in the NICU. Positive interactions with NICU staff- one contact person. Breastfeeding. Recommendations Nurse or lactation visit. Not just call me for questions. They always have questions. Respite Care. Letter to families. Someone to visit with. A cup of tea. Clear and specific discharge plans. Not extra stuff. Mental health support. Community resources list. Community supports available logistical, financial, emotional, peer groups. 15

Conclusion - Parental role development. - Support and information during NICU stay, but also as they transition home, and after (coordination of care). - Guidance to adjust to life changes successfully and positively. - Whole family approach. References Blackburn, A. C. (2010). Stories, ethics and the interpretation of meaning: Bearing witness to mothers' stories of their neonatal intensive care unit experience (Order No. AAI3367164). Available from PsycINFO. (622195116; 2010-99020-117). Retrieved from http://search.proquest.com.ezaccess.libraries.psu.edu/docview/622195116?accountid=13158. Burnham, N., Feeley, N., & Sherrard, K. (2013). Parents' Perceptions Regarding Readiness for Their Infant's Discharge from the NICU. Neonatal Network: The Journal of Neonatal Nursing, 32(5), 324-334. doi:10.1891/0730-0832.32.5.324. Carter, J., Mulder, R., Bartram, A., & Darlow, B. (2005). Infants In A Neonatal Intensive Care Unit: Parental Response. Archives of Disease in Childhood - Fetal and Neonatal Edition, 90(2), F109-F113. Evans, T., Whittingham, K., & Boyd, R. (2012). What helps the mother of a preterm infant become securely attached, responsive and well-adjusted? Infant Behavior and Development, 35(1), 1-11. doi:10.1016/j.infbeh.2011.10.002. Gennaro, S., Grisemer, A. and Musci, R. (1992). Expected versus actual life-style changes in mothers of preterm low birth weight infants. Neonatal Network. (3):39-45. Hall, S., Cross, J., Selix, N., Patterson, C., Segre, L., Chuffo-Siewert, R.,... Martin, M. (2015a). Recommendations for enhancing psychosocial support of NICU parents through staff education and support. Journal of Perinatology, 35, S29-S36. doi:10.1038/jp.2015.146 Hall, S., Ryan, D., Beatty, J., & Grubbs, L. (2015b). Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology, 35, S9 S13-S9 S13. doi:10.1038/jp.2015.143. Holditch-Davis, D., White-Traut, R., Levy, J. A., O'Shea, T. M., Geraldo, V., & David, R. J. (2014). Maternally administered interventions for preterm infants in the NICU: Effects on maternal psychological distress and mother infant relationship. Infant Behavior & Development, 37(4), 695-710. doi:10.1016/j.infbeh.2014.08.005. Hynan, M., Steinberg, Z., Baker, L., Cicco, R., Geller, P., Lassen, S.,... Stuebe, A. (2015). Recommendations for mental health professionals in the NICU. Journal of Perinatology, 35, S14-S18. doi:10.1038/jp.2015.144. Lefkowitz, D., Baxt, C., & Evans, J. (2010). Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). Journal of Clinical Psychology in Medical Settings, 3, 230-237. doi: 10.1007/s10880-010-9202-7. Obeidat, H. M., Bond E. A., & Callister, L. C. (2009). The Parental Experience of Having an Infant in the Newborn Intensive Care Unit. The Journal of Perinatal Education, 18(3), 23 29. http://doi.org/10.1624/105812409x461199 Our Vision. (2011). Retrieved December 16, 2015, from http://www.specialkids-specialcare.org Purdy, I., Craig, J., & Zeanah, P. (2015). NICU discharge planning and beyond: Recommendations for parent psychosocial support. J Perinatol Journal of Perinatology, 35, S24-S28. doi:10.1038/jp.2015.146. Rossman, B., Greene, M. M., & Meier, P. P. (2015). The role of peer support in the development of maternal identity for NICU moms. Journal of Obstetric, Gynecologic, & Neonatal Nursing: Clinical Scholarship for the Care of Women, Childbearing Families, & Newborns, 44(1), 3-16. doi:http://dx.doi.org.ezaccess.libraries.psu.edu/10.1111/1552-6909.12527 Stacey, S., Osborn, M., & Salkovskis, P. (2015). Life is a rollercoaster What helps parents cope with the Neonatal Intensive Care Unit (NICU)? Journal of Neonatal Nursing, 21(4), 136-141. doi:10.1016/j.jnn.2015.04.006 16

NICU Consortium Break, Networking, and Upcoming Educational Programs Sixth Annual Breast Feeding Symposium - August 2nd 2016-5pm-9pm Longs Peak Room at PSL - COST: $25.00 (PSL employees); $35.00 all others Register by calling Gina Minert: 303-839-6252 or regina.minert@healthonecares.com Beginning Rhythms and Keys to Caregiving Thursday and Friday September 8 9, 2016 For more information contact Barbara at specialcare@sk-sc.org Colorado Breastfeeding Conference - Friday, September 16, 2016 Arapahoe Community College in Littleton, CO. For more information contact Paulina Erices Jennie Harrison 17

Conflict of Interest Disclosure Jennie Harrison, MS, CIMI, CLE Has no real or apparent conflicts of interest to report Objectives: Participants will be able to identify Smooth Way Home background, goals, and components Participants will learn ways to support fragile infants in their transition from NICU to home Participants will learn needs and issues that face NICU families 18

MEETING THE NEEDS OF FRAGILE INFANTS AND THEIR FAMILIES AS THEY TRANSITION OUT OF THE NICU AND INTO THEIR COMMUNITY This work was made possible by generous support from Dignity Health Our Background 19

Smooth Way Home Identified Needs Connection with Services Families in Crisis Importance of Early Intervention Funding Growth Identified Needs and Issues Trauma and stress for families Costly re-admissions for NICU graduates Missed opportunities to support babies optimal growth and development Missed opportunity for families to understand and be connected with community services while in the protected environment of the NICU Lack of coordination, communication, & understanding between NICU and community providers Lack of training for community providers in care of fragile infants 20

Consortium of Community Stakeholders State agencies 10 Community Hospital Neonatal Intensive Care Units Community Providers Parent advocacy groups Community physicians Health insurance plans Neonatologists NICU Staff Purpose Improve the social, developmental, and medical outcomes of very fragile infants and their families by enhancing the coordination of care and the quality of services provided to them as they transition from the NICU back to their home and community. 21

Current Focus Hospital Teams Feeding Taskforce Professional Development Parent Support NICU Manual PMD Sustainability Program Components I. Professional Development III. Parent Support II. Systems Building 22

Desired Outcomes Increase the number of NICU babies who are connected with early intervention services prior to discharge or very shortly after discharge. Provide training and technical assistance to the community of early intervention providers related to specialized developmental assessment tools and intervention approaches appropriate for very fragile newborns and infants. Desired Outcomes Provide mentoring and resource support for families whose babies are transitioning home from the NICU Special emphasis on support for families whose babies have eating/feeding disorders (very prevalent in this population, and often underidentified and under-supported) Provide increased screening and support for parents coping with Perinatal Mood Disorders (PPD, PP OCD, PP Anxiety, PTSD) 23

I. Professional Development Professional Development Models BABIES and PreSTEP Models 1 Day Introductory Training 2.5 Day Intensive Workshop 8 Month Learning Collaborative Target: Community early intervention providers Funded by Dignity Health and Arizona Department of Health Services Lead Consultant and Trainer Joy V. Browne Ph.D., PCNS-BC, IMH-E Clinical Professor of Pediatrics and Psychiatry Director WONDERbabies Ways of Nurturing Development through Enhancing Relationships for Babies 24

II. Building Systems Work with Arizona NICUs Development of an Early Intervention Clinical Pathway Template to be used and adapted by individual hospital teams. Regular Early Intervention Clinical Rounds, and identified timeline/benchmarks for referral and coordination activities. 25

NICU Smooth Way Home Teams Smooth Way Home Manager Early Intervention Representative Community Health Nursing Representative (NICP Program NICU Social Workers Discharge Coordinator Developmental Specialist March of Dimes Representative Therapists Parent(s) It s all about the details It hasn t been easy! Little changes make a BIG difference Not every hospital looks the same Have a plan, but also learn as you go BE FLEXIBLE! BE PERSISTENT! Never lose sight of the importance of the work 26

III. Parent Support Parent Support 27

Emotional Effects Expected Experience Actual Experience NICU and PMD Postpartum depression is the number one complication of pregnancy 28%-70% NICU Maternal Incidence NICU PTSD After 30 Days 15%-53% of mothers 8% of fathers 4 Months Later 9% of mothers 33% of fathers 28

NICU PMD & Risk of Abuse and Neglect NICU setting makes it more difficult to bond with baby Once home, babies are more difficult than non-nicu babies fussiness medical follow-up eating Strain on relationships Higher rates of Perinatal Mood Disorders Smooth Way Home & PMD NICU Parent Support Groups In and Out Patient Bedside Support Training for Professionals Screening 29

Additional Resources for Parents NICU Parent Resource Manual Over 200 have been disseminated On-line in Spanish and English Additional funding from Raising Special Kids F2F HIC grant and ADHS OCSHCN Trained Parent Mentors Specialized expertise in working with fragile infants Specialized expertise in working with infants with eating/feeding problems Infant & Child Feeding Questionnaire Emailed Link Feeding SWH NICU Feeding Task Force Team Pilot: St. Joseph s Hospital Addition of feeding plan to Clinical Pathway Meeting with other Smooth Way Home hospitals 30

Feeding Infant and Child Feeding Questionnaire Authored by nationally-recognized feeding experts Aimed to help improve early identification Questions are age-specific based upon the birth date of the child and adjusted if the child was born prematurely Questions available through 36 months. After 36 months, all feeding skills should be mature Red flags indicate there may be a potential feeding struggle Our Dreams for the Future! Develop cadre of trainers who can build capacity in our professional community to meet the needs of fragile infants and their families. Expand scope of Smooth Way Home training. Implement the Smooth Way Home Clinical Pathway in all Level 3 NICUs in AZ. Increased availability of mental health services. Planes on the runway 31

Our Dreams for the Future! Better outcomes for babies and families!! Questions? Comments? 32

NICU Executive Committee Chair/Secretary Carolyn Kwerneland Tri-county Health Department - HCP Coordinator Co-chair Lori McLean, RN, BSN Boulder County Health Department - HCP Coordinator Treasurer Sarah McNamee, LCSW McNamee and Associates NICU Representatives Kathy Farnum, RN, BSN, CCM Case Manager NICU North Children s Hospital Colorado Kendra Perkey, MS, RD, CNSC NICU Dietitian/Supervisor Rocky Mountain Hospital for Children Community Representative/ SKSC BOD Liaison Renee Charlifue-Smith, MA, CCC-SLP University of Colorado Denver, JFK Partners, ENRICH Sophia Yager, RN, BSN Nursing Supervisor Jefferson County Public Health, Parent Representative Amber Minogue Mom of Olive and Riley Denver, Colorado MCH Nursing Consultant Barbara Deloian, PHD, RN, CPNP, IBCLC Special Kids, Special Care NICU Consortium Educational Meetings/Webinars Next Meeting October 26, 2016 9 AM to 11:30 AM If you would like to present a topic or hear a topic that would be of interest, please let us know. 33

Special Kids, Special Care Sign Up For info about either of these program send Barbara an e-mail at: specialcare@sksc.org Safe Sleep Going Home Program: Wearable Sleep Sac Blanket Requests Family Support Grant - Applications for newborn cribs or other health support services and supplies needed by families To receive announcement about future NICU Consortium Meetings, the newsletter, or other information, please sign up on the website Website: www.specialkids-specialcare.org 34