International Stillbirth Alliance Conference #ISACork2017 and lessons for Baby Loss Awareness Week

The #ISACork2017 conference has been full of inspiring and interesting things. It highlights how much work and research is going on to understand, document and evaluate issues around medical, perinatal, palliative and bereavement care.  For an overview of some of those many things you can find a Storify here and abstracts of the research discussed here.

If you have the slightest interest in the topic (you’re reading this so it’s a fairly safe guess) then it’s worth taking a look to take in the full breadth and depth of research going on. It’s truly inspiring. It covers pretty much everything and has some sobering findings as well as imaginative approaches to help people understand the enormity of the loss of a baby.

There is research from around the world and even attempts to quantify and measure stigma, one of the most corrosive aspects of baby loss and a huge factor undermining efforts to get baby loss as an issue as fixed in the public mind as SIDS.

Similar to measuring seemingly intangible things like stigma there is research looking at awareness itself and illustrating how important awareness raising still is.

There are some sobering findings from research into awareness of stillbirth amongst non-bereaved people.

It may have been in our zeal to raise awareness to aid prevention some of our efforts may have had the opposite effect. It’s a worrying thought but it’s not something impossible to address.  Research from Sands focus groups found:

  • Messaging around stillbirth needs to subtle and focused on how to reduce risk and have a safer pregnancy
  • Imagery needs to reflect positive messaging and not imply loss or bereavement
  • Statistics should be used with care and not in isolation

The two sets of research show us awareness covers more than just knowing about stillbirth. It shows us that there is still a long way to go. All the more surprising given:

I have been sceptical of awareness raising (there really has to be a better word) but research like this shows it is desperately needed if we are to prevent more deaths from happening and creating an environment where bereaved parents can talk about their babies without shame.

I do have mixed feelings about the focus group findings.  The rational part of me understands that in order to best influence people to achieve the best outcomes we need to tailor the message accordingly.  The other part of me is angry that yet again we have to dance around other people’s feelings for fear of frightening them and closing their ears and minds to a vital message.  The cooler part argues back that if it means that it reaches more people and prevents more deaths then it is a price worth paying.  For now.

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