Did you know approximately 106,000 babies are lost to miscarriage, stillbirth and newborn death in Australia each year? And 20-30 per cent of stillbirths can be avoided with improved care?
But despite our best possible efforts, sometimes babies still die. The way in which we respond, the support provided, how the system is structured, all have an impact on the immediate and longer-term wellbeing of parents and families; which is why bereavement training is so important. Evidence suggests care provided in this area is highly variable, which is why our Patient Safety and Quality Improvement Service ran an education on bereavement support for International Pregnancy and Infant Loss Remembrance Day (October 15). If you missed it, here are some of the key take-out messages and links to important resources.
A/Professor Fran Boyle, Co-Lead Care after Stillbirth, Stillbirth Centre for Research Excellence (CRE), said bereavement care starts at the first sign of concern that something may be wrong. Their Clinical Practice Guideline for Perinatal Bereavement Care outlines overarching goals for good perinatal bereavement care – which are aligned to SANDS Australia’s 10 Principles of Bereavement Care – and include:
- Good communication
It’s not just about what you say (including avoiding medical jargon), but how you say it, your non-verbal cues, the space/environment and cultural safeness. Good communication in the moment and moving forward cannot be underestimated for its impact on families’ wellbeing, and is the issue most often raised by parents when they reflect on their care.
- Recognition and shared decision-making
Decisions about things like funeral arrangements are usually the last thing parents think they will end up discussing when pregnant, in labour, or giving birth. Fran says in this moment, families need information and time to make these sorts of decisions, instead of assumptions made on their behalf to protect them. Encourage parents to hold the baby and actively parent their baby, to take photos and make mementos such as foot and handprints. Fran says making memories of their time as a family will help them regain some control over the situation and minimise later regrets.
Janelle Marshall, National Manager Care Services, SANDS, who also presented at the session, said recognition and acknowledgment of the baby and their role as parents are very important. She suggests staff ‘acknowledge the loss and the immenseness of their loss and grief. Let them know that their baby mattered and that it existed.’
- Effective support
Access to physical, emotional and practical support, including 24-hour support, is required immediately and ongoing. This includes a follow-up review, post-hospital support, and support during any subsequent pregnancy. Families will likely need help accessing these services, with Fran saying that asking for help was ‘a hard phone call to make; very isolating and frightening. Even though these families have left hospital without a baby, they still want to be treated as a parent.’
There are many services healthcare workers can refer parents and families to, including those provided by SANDS. The organisation has a dedicated network of volunteer parent supporters, each with lived experience who have undergone specialised training. These volunteers act as a companion by listening, normalising, and validating grief, which allows parents to grieve in the way they need to. And making a referral is easy.
At the education session, Janelle also announced that a new service was currently being piloted in cities across Australia (including Brisbane) called Hospital to Home. Developed following the Select Committee on Stillbirth Research and Education and roundtable discussions with bereaved parents, midwives, other healthcare workers, it was identified that care after hospital presented a huge gap in the care continuum. Under the pilot, families whose baby is stillborn are referred to a SANDS outreach worker who then works with the family for up to three months.
- Organisational response
Fran emphasised that effective, compassionate care can only be provided within the confines of an organisation that provides ready access to training opportunities, mentoring and peer support, appropriate policies and protocols, community support partners, and a monitoring and evaluation program.
Both Fran and Janelle acknowledged that healthcare worker grief is real, validated, and immense. Healthcare workers go into health to help people and for those in maternity services; to help bring life into the world. So, when something goes wrong, they are deeply affected too.
‘Best practice care goes beyond individuals. There needs to be training, support and strategies in place for self-care,’ Fran said.
Education and resources
- SANDS will soon launch an eLearning course for caring for bereaved parents and are taking registrations of interest via the above website.
- Other resources are also available on their website and the team can be contacted to arrange an in-service or education session for clinicians.
- Last year it was announced that Queensland, along with New South Wales and Victoria, will be implementing the Safer Baby Bundle, developed by the Stillbirth Centre for Research Excellence.
- The bundle will be formally launched in Queensland later this month, with 36 sites participating in its implementation. Regardless of whether your facility is participating, clinicians are encouraged to complete the IMPROVE and SBB eLearning modules.
For more information on SBB or any of the above information, please contact SaferBabyBundle@health.qld.gov.au.