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2020 Initiatives

Annual Meeting
September 12, 2018
Support of the
NICU Family in Crisis
Michelle Clements, BSN, RNC-NIC
Initiative Background
Healing carried grief does not happen by itself. Healing requires caregivers and
the people they help to identify and befriend the carried pain. Both must
openly acknowledge the presence of something important that deserves
attention.” Alan D. Wolfelt, PH.D., C.T.

Parents of hospitalized neonates experience the following:


• Grief
• Stress-induced emotional problems and physical
problems
• Disruption to parent-infant bonding
• Shattered confidence in parental role
• Isolation
• Shame, guilt, and social stigma
• Powerlessness

Systematic review of qualitative studies exploring parental experiences in the Neonatal Intensive Care Unit – Al Mahaireh, et al., 2016
The Voice of Parents

• “My personal experience...I had a 29 weeker...he was rushed off to the NICU. I wasn’t updated and couldn't
get updates as to his condition for over 8+ hours. I cant tell you how awful that was. When I was allowed to
go see my son, no one prepared me for what I was about to see. My son with tubes and wires and
machines to the point I didn't recognize him. For someone to have taken an initiative to explain what was
happening or any updates to forewarning me what he would be like when I initially saw him in the NICU
would have went a long way. I cant begin to explain the PTSD I continue to suffer from the entire
experience.”

• “My worry would be that giving the already busy wonderful doctors and nurses more to do than they
already do cuts into their time doing what's most important.........Caring for our little ones.”

• “When my son was in the NICU, I felt really disconnected I felt like I wasn't a mom. I think letting parents
know everything that is going on is important and when things will happen. I came in one day and he had
had his first bath, I really wish I could have been a part of that because it's a first that I missed and was
unaware of. Let moms know what they can and can't do. I felt like I couldn't hold my baby because it
would keep him from coming home longer. (But I know me and my husband where a little bit more difficult
then most).”
Initiative Aim

Goal of the Initiative


v In partnership with NICU parents, identify family stressors in the NICU
through the lens of trauma-informed care. Improve both patient and
parent outcomes through effective and informal psychosocial coping
interventions that involves peer-to-peer support from NICU veteran
parents and members of the health care team.

Key Measures
v Family Well-Being Assessment Tool
v Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU)
v Parent Satisfaction Survey
Initiative Reach

Target Population:
• NICU families, including grandparents and siblings.

Target Facilities:
• Hospitals with Special Care Nurseries or NICU’s
Initiative Impact
• In partnership with NICU families, identify the stressors of the NICU journey
• Collaborate with NICU families on best practices for informal psychosocial
support of families in crisis

• Develop peer-to-peer support guidelines and training for NICU graduate


parent volunteers
• Implement a recommended screening process for identifying families in
crisis and collect data for evaluation and further program development
• Develop training for NICU staff on paraprofessional psychosocial support to
NICU families
• Develop a state-wide collaboration between PQCNC, hospitals, and veteran
parents in on-going support of NICU families in crisis
10 Areas of Potentially
Better Practices for Care of the NICU Family in Crisis
Lead in
Developmental
Care

Help us Heal
Address
Involve Pastoral
Mental Health
Care

Screen Early and Facilitate Peer


Often Support

Promote
Participation

Support NICU Offer Palliative &


Bereavement
Caregivers Care

Staff Education Post-Discharge


and Support Follow-up

National Perinatal Association, 2016


Best Practices

Peer-to-Peer and Family Support Staff Education and Support

• Offer in-person peer support provided by • Understanding psychosocial needs of NICU parents
volunteer NICU graduate parents to all • Communicating with and providing support to parents
current parents • Providing Family-Centered Care
• Provide peer support to parents beginning • Providing self-care
in the antepartum period when possible, • Hold debriefing sessions
through the NICU stay and on to the • Embed a member of the pastoral care staff in the team
transition to home
• Provide training to veteran parents who will
provide peer support
• Include grandparents and siblings
• Forge ongoing collaboration between
hospitals and veteran parents
Family Well-Being Assessment Tool

Basic Information Pregnancy Intention

Assets and Resources Emotional Health and Wellness

Substance Use Relationship Health

Oregon Perinatal Quality Collaborative (n.d.). Oregon family well-being assessment


Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU)

• What is your level of stress based on the way your baby looks and behaves while you are in
the NICU?

• What is your level of stress related to treatments you have seen done to your baby?

• How stressful the sights and sounds of the NICU are/were for you?

• How you feel about your own relationship with the baby and your parental role?

Kawafha, M. M. (2018). Parental stress in the neonate intensive care unit and its association with parental and infant characteristics.
References

Al Maghaireh, D. F., Abdullah, K. L., Chan, C. M., Piaw, C. Y., & Al Kawafha, M. M. (2016). Systematic review of qualitative studies exploring

parental experiences in the Neonatal Intensive Care Unit. Journal of Clinical Nursing, 25(19-20), 2745–2756. doi:10.1111/jocn.13259

Hall, S., Hynan, M., Phillips, R., Press, J., Kenner, C., & Ryan, D. J. (2015). Development of program standards for psychosocial support of parents

of infants admitted to a Neonatal Intensive Care Unit: A national interdisciplinary consensus model. Newborn and Infant Nursing Reviews,

15(1), 24–27. doi:10.1053/j.nainr.2015.01.007

Kawafha, M. M. (2018). Parental stress in the neonate intensive care unit and its association with parental and infant characteristics. Journal of

Neonatal Nursing, doi:10.1016/j.jnn.2018.05.005

Macdonell, K., Christie, K., Robson, K., Pytlik, K., Lee, S. K., & OʼBrien, K. (2013). Implementing family-integrated care in the NICU: Engaging

veteran parents in program design and delivery. Advances in Neonatal Care, 13(4), 262-269. doi:10.1097/ANC.0b013e31829d8319

National Perinatal Association. (2016). Starting and sustaining a peer support program for NICU parents. Retrieved from

http://support4nicuparents.org/wp-content/uploads/2016/08/Starting-a-Peer-Support-Group-Aug-2016.pdf

Oregon Perinatal Quality Collaborative (n.d.). Oregon family well-being assessment. Retrieved from

http://www.oregonperinatalcollaborative.org/wp-content/uploads/2015/04/OFWBA-Survey-V_1.0-FINAL-6.1.17.pdf