57 Butterflies and Ribbons: The Positive Impact of Educational Strategies to Optimize Communication with Parents after the Perinatal Loss of a Co-twin
Authors: Janvier Annie , Boutillier Béatrice , Bigras-Mercier Alexie , Embleton Nicholas , Bélanger Sophie , Juneau Audrey Larone , Tremblay Christine 
Published: September 2023

Background

In neonatology, multiples pregnancies are common: 50% of twins and 95% of triplets are admitted to the NICU. Unfortunately, it is not rare for one baby to die. When this happens, parents are in a unique situation: they need to mourn their baby, while continuing to visit their other baby(ies) in the NICU. Communication with parents in these circumstances has been demonstrated to be sub-optimal, sometimes because clinicians are unaware and ask harmful questions (e.g., “Do you have any other kids?”) or because their education on how to deal with such issues was limited (despite available evidence). These gaps often lead to parental distress.

Objectives

To assess the impact of two different teaching strategies for clinicians dealing with the perinatal loss of a co-twin or triplet.

Design/Methods

Two different programs aimed at educating clinicians dealing with perinatal loss of co-twins or triplets were evaluated in 2022: 1) an open online 4-hour course with theory and practical points (the Butterfly project); and 2) a one hour in-person (workshop) or online course offered to NICU clinicians (free of charge) in a large academic NICU. The second course became the “Ribbon project” because bereaved parent partners had recommended the symbol of a ribbon rather than the butterfly as better reflecting perinatal loss. In both courses, essential topics were covered. For example: identifying the status of a surviving twin (including name of the deceased one); moving the surviving baby to another room after the death, knowing when and how to speak with bereaved parents, and identifying the surviving twin status at discharge. Participants in both groups were surveyed to ask whether they were satisfied with the course, their knowledge of care for perinatal loss was evaluated pre- and -post course, as well as when and how they used their training. Clinical impacts of the Ribbon project were also evaluated.

Results

In the butterfly project, all participants (n=734) reported that training exceeded or met their expectations, while 97% reported they learned new skills, and 48% reported already applying them. Many participants were grateful for the course, answering positively to open-ended questions: e.g., “I found this course incredibly useful for my future practice,” and “I feel a lot more confident in supporting parents.”

For the ribbon project (n= 174), 97% were satisfied or very satisfied with the training, and 97% reported feeling more comfortable talking to bereaved parents. Knowledge improved with training. In clinical audits that occurred between 2020 and 2022, 100% of cases were identified (28/28; 23 twins and 5 triplets surviving; 8 antenatal deaths) on the incubator and the baby(ies)’ admission card. Also, 100% of the surviving twins or triplets kept their identification (#1, 2, or 3) after speaking with parents, all changed rooms after the death of their co-twin or triplet, and all had the name of their co-twin or triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside; 38/55 (71%) felt comfortable dealing with parents in this situation and for those who did not, they knew who to ask for help.

Conclusion

Different educational strategies to optimize communication with families after the perinatal loss of a co-twin/triplet are appreciated and have a positive impact. One hour of teaching specifically for NICU personnel is enough to make a difference.