Working with bereaved parents for safer and more equitable care

Summary

Sands is the UK's leading charity working to save babies' lives and support bereaved families.

In this blog, Julia Clark and Mehali Patel from the Sands Saving Babies’ Lives research team, draw on their recent Listening Project to illustrate the value of working with bereaved parents. Julia and Mehali argue that hearing and amplifying these unique insights is vital to developing safer, more equitable neonatal and maternity care.

Content

At Sands, we believe that by listening to parents we can make care safer and save babies’ lives. Since 1978, when the charity was founded by a group of bereaved parents, families have been telling us their stories in support sessions and online forums, as well as more formally, through surveys, interviews and focus groups. Parent experiences influence work throughout the organisation, shaping how we approach research, education, support for families, and campaigning for change.

Inequalities in baby loss and the Sands Listening Project

In the UK, the overall rate of babies surviving has steadily improved, but this improvement has not been felt equally by all groups. Families from Black and Asian backgrounds remain more likely to experience pregnancy loss or the death of a baby compared with white families.[1,2]

To understand why inequalities in baby loss persist, we need to understand both the medical perspective and parents’ experiences of accessing and receiving care. In 2023, two MBRRACE-UK confidential enquiries looked at the clinical records of mothers and babies from Black and Asian backgrounds to learn lessons to improve care. The Sands Listening Project aimed to complement this work, using interviews and focus groups to learn about Black and Asian bereaved parents’ lived experiences of maternity, postnatal and neonatal care.

The 56 parents who took part in the Listening Project shone a light on care that works well, while also highlighting how systemic issues, along with poor practice and discrimination from some healthcare professionals, may lead to less safe care for some Black and Asian families.

Parent voices fundamental throughout

The voices of bereaved parents are at the heart of the Listening Project report. However, this is not the only way that parents have contributed to this work. From early in the project, parent representatives in the Project Involvement Group helped shape our overall approach. Parents have also been involved in raising awareness and increasing impact. For example, by speaking directly to the media about their experiences, sharing recorded extracts from their interviews, or writing emails to inspire Sands supporters to sign up to our e-action to demand action on ethnicity-related inequalities in baby deaths.

The power of listening

Half of the parents who took part in the project felt that they had not been listened to in their pregnancy or after their baby died. Some of these parents later told us that having the opportunity to share their story as part of the Listening Project had been an important and positive experience for them.

“I felt that I was listened to and understood."

“Personally, I found that it helped me in my grieving process. Also after a while, I think it becomes difficult to approach the topic of baby loss with friends and families. Having the space to talk about it openly definitely enabled me to process it in a better way.”

“There was no shutting down of experiences.”

Many of the parents told us that they were motivated to share their experience because they did not want other families to experience what they had. They – like us – believe that, if their stories are heard, babies’ lives can be saved.

“I am delighted to know that my story has contributed to such a powerful cause. As strange as it sounds, every time I read or hear my story it fills me with more strength, especially knowing it has helped create a difference.”

A sensitive and personalised approach

We know there are perceived challenges in this area of work. We have heard concerns that it is too difficult for bereaved parents to revisit their experiences, or that their memories may be less reliable because of what they have experienced. Also, the way that research projects and feedback systems are designed can mean that parents are being asked if they want to share their experience very soon after their baby has died, when they may not be ready to do so. 

Working with bereaved parents requires a highly sensitive and personalised approach. Anyone who is planning to undertake research or listening work with bereaved parents should reach out early to established charities, such as Sands, and stakeholder groups who specialise in supporting families who have experienced pregnancy or baby loss. This can inform how the work is framed, families are engaged and project materials are designed. With thoughtful planning, support and partnership work, bereaved families can be included in initiatives to improve care and save lives.

Translating parent insights into safer care

Reducing inequalities is a challenge to us all, and listening to parents must be at the heart of this work. Bereaved parents have unique insights into what happened when their baby died. If they are not listened to, opportunities to understand what went wrong are limited, underlying causes may remain unseen, and safety initiatives risk focusing on what healthcare staff perceive to be the problem.

But, when we do hear the stories of bereaved parents, we gain a deeper understanding of what is working well in maternity and neonatal care and where things need to be improved. By amplifying parent voices so that these lessons are heard and understood by those with the power to make change, we can reduce inequalities, make care safer for all families and, ultimately, save babies’ lives.

If you would like to know more about our research work and approach to working with bereaved parents, please visit the Sands website.

References

1. Office for National Statistics (2023). Vital statistics in the UK: births, deaths and marriages. Annual UK and constituent country figures for births, deaths, marriages, divorces, civil partnerships and civil partnership dissolutions. 

2. Draper, E.S., Gallimore, I.D., Smith, L.K., et al. on behalf of the MBRRACE-UK Collaboration (2023). MBRRACE-UK Perinatal Mortality Surveillance, UK Perinatal Deaths for Births from January to December 2021: State of the Nation Report. 

About the Author

Sands is the UK's leading charity working to save babies' lives and support bereaved families. Sands’ vision is a world where fewer babies die and, when a baby does die, anyone affected receives the best possible care and support for as long as it is needed. Sands can support you online and over the phone, too. For more information visit the Sands website.

Julia is a research officer in the Sands Saving Babies’ Lives team. A registered midwife with a PhD in Health Sciences, Julia’s research interests include stillbirth prevention, risk reduction work, informed choice, maternal mental health, and inequalities and rights in maternity care.

Mehali is a Research Manager with a decade of experience working across pregnancy and baby charities. She has proven track record in working in partnership with families to generate and disseminate evidence. Her interests include reducing perinatal inequalities, making maternity and neonatal care safer and preventing pregnancy loss and the death of babies. Mehali is one of the co-authors of the Listening Project.