Dawson’s 2021 application focused on a qualitative evaluation of the illustrated booklet Stillbirth, Neonatal Death and the Grief Journey. The booklet was based on research evidence from a study of perinatal bereavement, and made in collaboration with Sands, the UK’s largest stillbirth and neonatal death charity. It was offered as a free resource to bereaved parents via Sands, the Scottish charity Held in our Hearts, and North Bristol NHS Trust. PRF funding gave Dawson and colleagues the opportunity to formally evaluate the resource and its impact.

Evaluations of individual baby loss resources are missing from stillbirth literature and research, making this project particularly important. The project findings will be included in Dawson’s upcoming book about creativity and grief, as well as feeding into her continued participatory research around grief and baby loss, and informing her 2022 application to the PRF.

The study’s primary aim was to evaluate the acceptability and utility of the co-designed booklet from two perspectives, 1) midwives and healthcare professionals, 2) bereaved parents. The team were interested in whether an accessible resource focused on baby loss and grief could improve outcomes for bereaved parents.

Dawson and colleagues used focus groups led by trained researchers who were experienced in conducting sensitive research about the end of life, grief and bereavement. Participants were recruited via national and regional networks.

This work fed into Dawson’s successful follow-on application to the PRF in 2022. Feedback on the first iteration of the booklet suggested it could be more inclusive. Stage two therefore widened the range of participants to include people who had experienced miscarriage, the loss of one or more babies from a multiple pregnancy, and termination for medical reasons (TFMR).

The research team also wanted to engage more diverse communities in their focus groups, and in line with this, the booklet has been renamed Pregnancy, Baby Loss and the Grief Journey. This work was planned in collaboration with charities, bereaved parents and medical professionals and aimed to ensure the booklet would have significant lasting impact as a key resource in this area. The feedback from the latest round of the project will be used to develop a new edition of the booklet and inform the qualitative evaluation.

• Increasing diversity of voices included in project, as informed by previous work
• Reimbursing participants for their time
• Designing and delivering inclusive participatory workshops

• Leave enough time for ethics approval, recruitment and contracting – administrative challenges can delay a project and affect the overall timeline
• Reimburse participants and those involved in the project for their time