Reflections on the International Stillbirth Alliance 2023 Conference and Conversations with Bereaved Parents
With only 25 days left as a Watson Fellow abroad, I have begun to spend more of my time reflecting on this past year - with all of its learning, growth, challenges, and joys. Consequently, I have also found myself thinking back to a time when all that I have done this year was only a dream, a hypothetical, something to plan and imagine. And, at that stage, when I talked about this goal with the limited few who I let in to hope alongside me (as well as to get feedback, constructive criticism, and advice), a question that I got asked time and time again was, "What will you do if parents don't want to talk with you?" My response always was that I was not going to force anyone to do anything, and my goals were to listen, observe, and learn.
People worried, for my own sake, that my project might not turn out how I was hoping due to barriers I was unable to fix, namely my age, lack of personal experience, lack of professional qualifications, and even that I was not yet a mother at all. I was presented with hypothetical situation after hypothetical situation to assess how I would handle a variety of scenarios related to my presence being questioned and refused. I think I was given so many of these to contend with in the application and interview prep and process because some could not understand fully that my plan simply was to be there, in the spaces, open and ready. I was available to talk and listen, but also knew that those situations may not come and I may be asked to leave. I was going to follow the lead of the families and the hosts with whom I was working.
It is funny looking back on those conversations now, and the fears projected onto me by those hearing about my project, those who worried how I would have those conversations with bereaved families and communities. It is indicative of the way our communities understand grief and bereavement. It is indicative of the nervousness and anxiety that many of us carry when going into an interaction with someone who is bereaved. It is indicative of those little voices in our heads yelling, "Do. Not. Say. The. Wrong. Thing!" And so, we push that onto the bereaved, and we decide that they probably won't want to talk to us. That it would be too painful, scary, or sad for them to share the ones that they loved with us. If we don't talk about it, maybe we can forget that it happened.
Obviously, we know that isn't the case. And, because of that, throughout my year, I haven't faced any problems finding people to talk to about their experiences. Maybe finding is the wrong word here. Because, often what happens is, in a casual conversation, someone asks why I am visiting the country and I share the nature of my project and then they share their story of loss with me.
This isn't only in spaces doing work related to my project either, while of course it happens in those situations frequently. But, it has also occurred on buses, in coffee shops, at training courses. In one instance, a mother shared her story with me and told her friend about the experience who then asked to get my contact information so that her son's life and death could contribute to my learning too. I have talked to moms, dads, grandparents, aunts, siblings, neighbors, healthcare professionals, classmates, friends, and community members far and wide.
People want to talk.
In sharing what I'm doing as a Watson Fellow, I opened the door to these moments and these discussions. I can present myself as someone who is open to these conversations and won't run away, won't try to fix or heal, but can be there and listen.
This past weekend, June 29-July 2, I traveled to Sheffield, UK to attend the 20th International Stillbirth Alliance Conference. There I was privileged enough to have the opportunity to listen to presentations by and speak with clinicians, researchers, and bereaved parents all dedicated to working on issues surrounding stillbirth. In a Q&A session following a talk given by a stillbirth parent, a back and forth conversation resulted in the conclusion that talking about their child and doing advocacy for better stillbirth awareness, prevention, pregnancy care, and bereavement care is how they grieve. "This is how we parent."
One of the key hallmarks of the International Stillbirth Alliance is the way in which it brings together clinicians, researchers, and parents. It is foundational to the organization to champion the voices of parents. It was founded by three parents bereaved by stillbirth. And while the work of the clinicians and researchers are fantastic and vital, graphs and numbers don't hold the same impact as a personal story of how they heard that their baby had died, of a silent delivery room, of searching for support in the aftermath, of the anxiety in subsequent pregnancies.
The collaboration between these parties is essential. And while this advocacy work done by caregivers is how they are able to parent their babies, it is also important to not put everything on them. We need to stop forcing bereaved individuals to not only carry their grief but also teach us how to help them carry it. When these families need support, frequently, people turn to them to get support on how to provide that support.
A key message from the conference this year centered around a need for better and more integrated, ingrained training around stillbirth and bereavement care across the spectrum of those working in the healthcare profession. In England, the National Bereavement Care Pathway laid out a set of nine standards of necessary bereavement care for cases of pregnancy, baby, neonatal, and infant loss. This type of guidance has the possibility to be truly transformative in how systems respond to and support bereaved families in the immediate aftermath of loss.
But, that grief sticks around after families leave the hospitals. So, while it is necessary and important that all healthcare professionals get better training and understanding around death, dying, grief, and bereavement care, so should everyone. Families will go back home and re-enter their communities, so even if they had the most supportive hospital experience, if people in their neighborhood avoid eye contact, never say their baby's name, and expect them to "get over it," they are still being failed in bereavement care and support provided.
A presentation at the conference emphasized how we should be seeking to offer families and individuals the right care at the right time. We can do this through offering choices, listening, and actually hearing what is being communicated to us. But, that right time might be ears down the line. And that right support might not be someone to be given in a healthcare setting.
We need to invite people in if we want to improve bereavement care. While, yes, there are a handful of things not to say, there are many more ways to get it right. We need to talk more openly about death starting from when children are young. We need to remove the fear and the worry and focus on listening.
Often, being present, listening, and not trying to fix or solve things is enough.
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