Disclosures. Updates: Psychological Support for Families in the NICU NPA Interdisciplinary Recommendations

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1 Disclosures Updates: Psychological Support for Families in the NICU NPA Interdisciplinary Recommendations Janet N. Press, C.N.S.,M.S.N.,C.T.,R.N. C. Perinatal/ Obstetrical Coordinator Central New York Region Perinatal Bereavement Coordinator Crouse Hospital I have no conflicts of interest or relevant financial relationships with any commercial entities. Interdisciplinary Recommendations for Psychosocial Support of NICU Parents Workgroup Convened by the National Perinatal Association New York State Perinatal Association (NYSPA) The New York State Perinatal Association (NYSPAstate wide alliance of health and human service professionals and consumers concerned with perinatal health issues from preconception through early childhood. Advocates for optimal perinatal care and parenting Promotes education and research Influences state priorities Encourages a multi cultural and multi disciplinary approach to maternal and child health

2 National Perinatal Association NPA gives voice to the needs of pregnant women, infants, their families and their healthcare providers. Components of Comprehensive Family Support in the NICU Staff Education & Support Mental Health Professionals Peer to peer & Family Support Brings together stakeholders that collectively can have the greatest positive impact on perinatal care in the United States. Post Discharge Follow up Family centered Developmental Care Palliative & Bereavement Care National Perinatal Association: Recommendations for Psychosocial Support of NICU Parents Summary Parents of babies in NICUs may experience great distress and require psychosocial support. All NICUs should do their best to provide parents with comprehensive family support. NICU staff should be both educated in providing psychosocial support to parents, and supported in their caregiver roles. The end result will be creation of stronger, healthier families. In a perfect world We would do all of these things to support NICU families.

3 The Role of Mental Health Professionals Rationale and Need In the first postpartum year, 20 30% of NICU parents may develop either: Depression Anxiety Obsessive compulsive disorders Acute stress disorder (ASD) PTSD Other psychosocial stressors include: Financial Family Personal stress Recommendations for the Role of Mental Health Professionals >20 bed NICUs MSW social worker and a fullor part time doctoral level psychologist on staff both:counseling, screening, educating staff and teaching parenting skills. NICU parents should be screened for emotional distress within the first wk after admission and within 48 hrs. prior to discharge (for stays > 1 wk), only if treatment resources are available. Layered levels of emotional support should be available to all parents. Layered Levels of Emotional Support Stepped Care Pyramid (Kazak, 2006)

4 Role of Peer to Peerand Family Support Rationale and Need Parents own support networks may increase parents stress lack of understanding of the NICU experience. May not be available due to geographic distance Family and friends may be grieving contributes to parents distress. Recommendations for Peer to Peer Support Every parent should be offered peer support. Best practice in person support. Consistent peer support from antepartum discharge and beyond. Support offered to baby s family including both parents, grandparents, and siblings as needed and desired. Family Centered Developmental Care (FCDC)

5 Rationale and Need for FCDC Optimal neurodevelopment Successful integration of the vulnerable baby into a healthy family unit. Family part of NICU team lowers parents stress. An interdisciplinary team must be involved. Recommendations for Family Centered Developmental Care Antenatal consultation lead to a NICU stay. NICU admission, families welcomed,receive: Culturally appropriate information written resources, focus on baby parent interaction Parents are partners. Staff education on FCDC. Staff communication with families should be regular, understandable, personalized, consistent and culturally sensitive. Family Centered Developmental Care ( con t) Bereavement and Palliative Care available. Transition to home should begin at baby s admission. Quality improvement projects on FCDC should be integral to care provided. Hospital committees and NICU policy development should include family advocates as regular members. Palliative and Bereavement Care: A Family Centered Integrative Approach

6 Rationale and Need American Academy of Pediatrics(AAP) has practices for palliative care sometimes fragmented or not yet well defined. Providing intensive care to babies with lifelimiting conditions does not prolong life. Palliative care alternative to neonatal intensive care for babies at edge of viability with lifelimiting conditions dx before or after birth, or those who become ill in the NICU and are not responding to aggressive treatment. HCP need skills to discuss end of life decisionmaking with families Parents who lose a baby should be offered: Anticipatory guidance Participation in bereavement rituals Psychosocial support Referrals Post hospital follow up Conference with findings Recommendations for Palliative & Bereavement Care Palliative and bereavement care for any family whose fetus or neonate is facing a life limiting condition or imminent death. AAP guidelines when discussing whether to initiate or continue intensive care for a baby who may not survive Perinatal Hospice Anticipating a perinatal loss Antenatal interdisciplinary conference to develop plans for: a. Birth including labor and delivery b. Resuscitation vs. allowing a natural death c. Palliative care if the baby is not expected to survive Encouragement to bond and to create memories with their baby during pregnancy. Psychosocial support for all family members.

7 Health System Recommendations Education in palliative and bereavement care Policies easily accessible to all staff in every hospital Resources in the community Collaborate organ donation organizations Healthcare staff psychosocial support and engage in self care Conclusions Palliative and bereavement care must be considered standard care and treated as an expectation. A family centered, integrated culturally driven plan of care can provide support for families experiencing an anticipated or unanticipated loss. It is important to engage the family in the plan of care and to recognize that each family is different in how they wish to approach this situation. Post Discharge Follow up and Beyond Rationale and Need NICU parents remain at increased risk for PPD and PTSD even after their NICU stay. A proactive approach is needed to support the parent baby relationship during the NICU and after transition to home. Studies show a home visiting program may improve outcomes for high risk premature infants. (Goyal, Pediatrics, 2013).

8 Recommendations for Post Discharge Medical Follow up Nurse assigned to every family coordinate s treatment plans and post discharge referrals, equipment needs. Pediatrician or PCP meet with family before discharge. PCP receives telecommunication from doctors already involved in baby s care. Home visitors included. NICU Summary. Recommendations for Parenting Education NICU staff empower development of parenting skills. Necessary care practices parents and demonstrate competence. Anticipatory guidance about psychosocial stresses. Recommendations/Roles for Home Visitors All NICU families after they go home. NICU staff and home visitors can share information Home visitors should be in contact with PCP assure good communication and coordination of care. Developmental screens /Parent education Parents mental health Resources for family as their needs change. Recommendations for Post Discharge Emotional Support A NICU point person provides information re known risk factors for parental emotional distress post NICU. OB, FP, general Peds, and Peds subspecialty clinics should have staff trained to identify families at risk and to provide supportive services or referrals to them for families in need. Peer Mentors Resources

9 Staff Education: Supporting Parents Rationale and Need HCP as well as NICU parents think there is a need for improved NICU staff parent communication. Work in perinatal service areas is stressful; HCP have high rates of burnout, compassion fatigue, and secondary traumatic stress. HCP affected by burnout, etc. have reduced ability to provide effective support to parents. Recommendations for Staff Education All staff should receive training simultaneously. Normal/expected parental responses to NICU. Perinatal mood and anxiety disorders. Communication skills, including active listening and how to give bad news. Simulation training. Self study modules, web based training, didactic presentations, outside speakers, etc. Fully integrated into other platforms. Administrative support critical. Recommendations for Staff Support Staff should support one another and respect each discipline s contribution. Staff support should be integrated into the everyday operation of the NICU. All staff should be trained in self care including management of work stresses, maintenance of work life balance, and management of life skills.

10 Start where you are, because Members from these Organizations Academy of Neonatal Nursing National Perinatal Association Perinatal Section of American Academy of Pediatrics Association of Women s Health, Obstetric and Neonatal Nurses Council of International Neonatal Nurses Healthy Mothers, Healthy Babies March of Dimes National Association of Neonatal Nurses National Association of Neonatal Therapists National Association of Pediatric Nurse Practitioners National Association of Perinatal Social Workers National Premature Infant Health Coalition Nurse Family Partnership Oklahoma Infant Alliance Postpartum Support International Preeclampsia Foundation Society of Maternal Fetal Medicine Society of Pediatric Psychology Special Care/Special Kids Transcultural Nursing Association Endorsing Organizations* Professional Organizations Nat Assoc Neonatal Nurses Nat Assoc Perinatal SW Nat Assoc Pediatric NPs Nat Assoc Neonatal Therapists Academy of Neonatal Nursing Council of International Neonatal Nurses Nurse Family Partnership Marcé Society for Perinatal Mental Health National Perinatal Association Parent Support Organizations Canadian Foundation for Premature Babies European Foundation for the Care of Newborn Infants Hope for HIE The Tiny Miracles Founda NICU Helping Hands Preeclampsia Foundation *As of August 1, 2015