Increasingly we are seeing the creation of parent-led peer-to-peer support organizations for NICU families. A person who has been through a challenging experience is in a unique position to help someone else now going through the same experience. And most parents who have had babies in the NICU can agree that it is a challenging experience, at best, and a deeply traumatizing one at worst. As a result of dealing with separation NICU Supportfrom their babies, experiencing the stresses of seeing them go through painful, invasive procedures and even near-death experiences, and coping with fear and uncertainty over outcomes, NICU parents have higher rates of depression, anxiety and posttraumatic stress disorder than parents of term newborns.

The provision of psychosocial support can be a mitigating factor for parental distress. NICU staff, including doctors, nurses, social workers, and psychologists can help normalize parents’ feelings and experiences through frequent, clear, and empathic communication. But parents often find a veteran matched peer or “buddy” can provide support in ways that medical professionals cannot, primarily by virtue of the shared experience of being NICU parents. With peer supporters, NICU parents can feel freer to express some feelings they may not want to share with the NICU team, and they might be better able to understand their peers’ explanations of medical terms and conditions.

There are many benefits of peer support for NICU parents: They become more optimistic, confident and accepting of their situation, and they develop better problem-solving capabilities and spend more time with their babies, with greater feelings of empowerment. Rates of parental depression and anxiety are lower in NICU parents who have had a peer match.

Peer support can be provided in-person within the NICU setting, or by phone, or even through an internet-based webpage. Another model is that of parent support groups, which are often co-led by NICU parents and professionals. Many organizations have arisen through the efforts of graduate NICU parents who have felt the need to “give back” to their communities; they have also been driven by wanting to improve the experience for future NICU parents, not wanting them to feel as alone as they did going through their own experience. Such groups may serve one hospital in a community, or several, or may even make their services available to parents all over the country through “virtual” connections. Hospitals have also led the formation of their own support groups, sometimes with the assistance of the March of Dimes Family Support Program. Any model can work, but a key element in success is administrative support and buy-in from the hospital partnering with a parent support organization.

Issues such as volunteer training, the interaction of volunteers with and supervision by NICU staff, and their compliance with HIPAA regulations will need to be addressed, but these can all be worked out with the development of clear guidelines from the outset and ongoing communication between parent leaders and NICU administrators. As the American Academy of Pediatrics has endorsed peer support as being one of the pillars of family-centered care, (1) all NICUs would do well to incorporate a peer support program into their offerings for parents. Indeed, the Interdisciplinary Recommendations for Psychosocial Support of NICU Parents (2) published in December 2015 state that every parent should be offered peer support from a veteran NICU parent.

For a fuller description of the rationale, benefits, and programmatic considerations of peer support programs for NICU parents, please see a more complete discussion here. (3) For a partial listing of peer support organizations currently operating in the U.S., some of which provide services nationally, click here.

References

  1. American Academy of Pediatrics, Committee on Hospital Care, Institute for Patient- and Family-Centered Care. Patient- and family-centered care and the pediatrician’s role. Pediatrics 2012; 129: 394–404.
  2. Hall S, Hynan M, editors. Interdisciplinary recommendations for the psychosocial support of NICU parents. J Perinatol 2015;35:Supplement.
  3. Hall S, Ryan D, Beatty J, Grubbs L. Recommendations for peer-to-peer support for NICU parents. J Perinatol. 2015;(35):S9–13.