These goals will evolve over time. The first set is based on our initial perceptions and personal experiences during our two losses. As we learn more about existing services and organizations and meet and consult with other bereaved parents, the goals will evolve.
Many great organizations already provide helpful and supportive services to bereaved parents. However, the existence of these services is not always well known. Health professionals might know one or two services they can recommend, but our research showed that all the available lists are largely incomplete, outdated and not always helpful. Obviously quantity is not a goal in itself and the intention is not to sacrifice quality of service. But for things such as support groups it just helps to know which ones are available in what area. At this stage, it takes a considerable amount of time and energy to identify all available services and most bereaved parents, esp. if they only recently lost their child, will not be in a position to conduct such a search. We need to reverse the situation. The resources need to come to the parents when they need them most, without any efforts. They can then choose if they would like to make use of any of the available services or not. This requires to first identify all the available resources and in a subsequent step to work with health professionals who will often be the main contact for bereaved parents so that they are aware about the resource list.
In both of our own losses we realized that many more parents than we ever expected are affected by a loss of a child. Once one experiences such a loss, friends and colleagues come forward and share their own stories of loss and grief. We sometimes wonder if there is a stigma about infant death and child loss. Or it might just be too personal or difficult to talk about. In many cases it seems to cost parents too much energy to talk openly about it due to the way the public responds. Some responses are just deeply hurtfull and many organizations publish guides what not to say to bereaved parents for just this reason. For parents it appears to be easier to hide and put on a mask while participating in society. The downside of this “hidden” issue though is that it might cause additional difficulties for the grieving family, for example if others have absolutely no idea how to react or if parents are not acknowlegded as parents because their child is not with them any more. Or it might limit the efforts made to prevent child loss, e.g. regarding the money spent on research to identify what leads to miscarriages or stillbirths. Have you ever walked for a cure, cycled for an awareness campaign, grown a musstache during Movember, or taken a plunge into icecold water during Polarbear Swim? And yet, how many events do you know that address or try to raise money or awareness for child loss? October is childloss awareness month, but our experience is that it is not very widely known. A look at the statistics certainly screams for more attention to be put on this terrible issue.
Based on our current research on websites most resources seem to originate in the United States or some other part of the world with only limited organizations being focused on Canada. Moreover, there does not seem to be an existing way for the various organizations to coordinate their efforts. We see value in starting a larger discussion about the most pressing needs for parents, for health care professionals, for researchers etc. The lack of such a strategic focus might explain the issues described under goal #2. If we want to get the attention for child loss that it deserves we need to bring our voices together.
Very few people who have not lost a child know what it feels like and how grief from losing a child might differ from other forms of grief. That’s why we see most value in helping bereaved parents to meet each other to be able to speak to the only people who really understand what they are going through.