In January 2014, the National Perinatal Association convened a broad group of approximately 50 thought leaders and stakeholders— physicians (both neonatology and obstetrics), nurses, nurse practitioners, nurse midwives, developmental care specialists, psychologists, social workers, public health experts, parent support group leaders and parents—to develop interdisciplinary guidelines for psychosocial support services for parents whose infants are hospitalized in neonatal intensive care units (NICUs).
This group convened with the common purpose of improving the level of psychosocial support provided to NICU parents as well as improving training and support for those who provide care in NICUs. The group was responding to the personal stories of former NICU parents and to the body of literature that demonstrates an increased occurrence of postpartum depression, posttraumatic stress disorder, and anxiety disorders in NICU parents compared with parents of term infants. Anyone who has ever stepped into a NICU–whether parent or healthcare provider–knows how stressful an experience it can be!
The workgroup consisted of representatives of 29 professional groups and parent groups. NICU parents were involved in each of the six committees. The more than 50 work group members represented 22 academic institutions. You can see the list of participants here.
Six interdisciplinary committees (family-centered developmental care, peer-to-peer support, mental health professionals in the NICU, palliative care and bereavement, follow-up support, and staff education and support) worked to produce the recommendations. The committees gathered research citations and communicated by e-mail and phone to determine evidence-based needs of NICU parents as well as best practices. Many members attended a summit in 2014 in St. Louis, MO, to formulate final recommendations.
Whenever possible the recommendations follow from the research citations. Some recommendations have an evidence base that is modest. In these cases the workgroup relied on consistent personal experiences that seemed to indicate that the recommendation is simply “the right thing to do.” All recommendations were subsequently sent to participating organizations for their review and statements of support. You can see the list of organizations that have given their support to these recommendations here. Support for the recommendations does not indicate agreement with each and every recommendation, but rather it indicates agreement with the overall tenor of the recommendations. It does not indicate official guidance from the supporting organization. If you would like to add your organization to the list, please email us at endorse@support4NICUparents.org.
The recommendations and supporting narratives were subsequently published in a Supplement to the Journal of Perinatology December, 2015 issue. Here you can download the Interdisciplinary Recommendations for Psychosocial Support of NICU Parents without the supporting narrative. The recommendations should be considered a road map for how NICUs should be transformed, and members of the workgroup fully understand that changing both culture and process in the NICU takes time. It is our hope that ultimately in every NICU psychosocial support of both NICU parents and staff will be goals equal in importance to the health and development of babies.
We have also developed a Speaker’s Bureau of both professionals and NICU parents who are committed to provide staff education and/or parent mentor training on the topic of psychosocial support of NICU parents. Please have a look and choose a speaker who might meet your organization’s needs.
This work couldn’t have been done without our sponsors, to whom we are grateful.
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