Impact case study database

Development of best practice guidance to help healthcare professionals support parents

The main results from R2-R4 were used to co-produce practical guidance with HCPs and parents (EV1) and were published on the Butterfly Project website ( www.neonatalbutterflyproject.org) in early 2016. As at July 2020, over 700 HCPs were registered from over 25 countries, and the site receives over 10,000 hits a year (EV2). This educational site hosts short video clips illustrating the main themes, to improve understanding of this challenging situation and offering a way for HCPs to discuss the loss with the parents. The resources are available free of charge, and thanks to international demand they have been translated into more than 10 languages such as French, German, Italian, Spanish and Arabic.

Other national bodies have subsequently taken up the research to inform their own guidelines. In 2016, the national stillbirth and neonatal death charity Sands used R2 to underpin the 4th edition of their guidelines for professionals “Pregnancy loss and the death of a baby” (EV3). For example, on page 194 the guidelines state:

• "If one or more babies have already died, it is important that staff caring for the surviving baby or babies… recognise the importance of all the babies to the parents and listen when the parents want to talk about the baby or babies who have died [citing R2].”

• “Support from staff may be crucial for parents’ well-being [citing R2].”

Sands also lead the National Bereavement Care Pathway, which signposts to Butterfly Project resources from its website (EV4).

In 2017, the Twins Trust produced a bereavement booklet which provides information on the Butterfly Project on page 68 (EV5).

In addition, the research, guidelines and cot cards have been used and endorsed by the following bodies (EV6):

• In a letter signed by Cherilyn Mackrory MP and the Rt Hon Jeremy Hunt, the All-Party Parliamentary Working Group on Baby Loss confirmed their full endorsement of the Butterfly Project and that it has enabled HCPs to feel more confident in supporting parents.

• Bereavement Training International, who have provided training since early 2016 to over 500 nurses, midwives and doctors. Many participants stated that this has been the most important and relevant element of the training and reported an increase in confidence when supporting parents at this very difficult time.

• The Tiny Lives Trust, who were a major sponsor of this research, stated that they fully endorse this work and that the training improves HCPs’ confidence in supporting parents.

As at July 2020, more than 10,000 cot cards have been distributed to 250 hospitals across the UK by the Skye High Foundation, who stated that “The cards have been very well received by parents, who value the kindness and support shown by hospital staff during a traumatic time” (EV7).

Impact on knowledge and confidence of healthcare professionals

A follow-up survey of HCPs (EV8) conducted in late 2019 showed that the material had improved their confidence. Of the 56 who provided responses to the question “Since completing the last survey in 2016, how confident do you feel in providing practical support and information?”, 89% reported feeling more confident. In addition, 85% said they felt that continuity of care had improved. All participants found the guidelines useful, and 71% said the guidelines better equipped staff to support parents. In terms of the Butterfly Project website, 96% found it helpful and 91% found the films helpful. In addition, 64% had used the butterfly cards and provided overwhelmingly positive feedback.

Feedback was also received from clinical leads from various Hospital Trusts in the UK (EV9), including:

• South Tees, where the guidance has been used since 2015 by over 100 HCPs.

• Bradford Teaching Hospitals, where the guidance has been used since 2016 by over 100 HCPs.

• The Royal Hospital for Children, Glasgow, where the guidance has been used since January 2017 by over 150 maternity HCPs.

• University Hospital Southampton, where the guidance has been used since 2017/18 by 170 Neonatal Staff.

The guidance has also been used internationally (EV10), including:

• Hospital Moinhos de Vento, Brazil who began using the guidance in October 2018 for all 25 NICU HCPs.

• Sachs' Children and Youth Hospital, Stockholm, Sweden where it has been translated into Swedish and is used by all staff.

All units confirmed that HCPs reported an increase in confidence after the guidelines were adopted. They had also all received or produced their own cot cards, which have been well received by parents during a difficult time.

Impact on parents

In late 2020, a survey was carried out with parents who had undergone a loss from a multiple pregnancy. Participation was voluntary and parents were approached with tact and sensitivity. Of the 41 who responded, 51% had been offered a cot card and found it helpful and 23% were not offered a card but would have liked one. Other responses discussed the logistics of card distribution but were generally positive (EV2).

In summary: Newcastle research, co-produced with parents and HCPs, has led to guidance which has been widely used to best support parents during a traumatic time.