2.6 million babies are stillborn worldwide every year.

That is, a loss of life of the foetus after the 22nd week of the pregnancy. The number differs greatly between economically developed and less developed countries, and in Estonia, the numbers are smaller. 46 stillbirths a year.
But adjacently we also have 23 infant deaths and 1790 miscarriages, making the total 1859 perinatal deaths a year.

Besides the mother, it affects the partner, other children in the family, grandparents, friends, some more, some less.
Therefore the number of people influenced is quite large.

We don’t really talk about these losses. It’s an uncomfortable topic being at the crossroads of women’s health and death.
Often, looking from the outside in, we don’t even know about these struggles and losses families face.

The negative emotions deriving from the loss can lead to long-term mental health issues like depression and anxiety. Emotional resilience and the availability of strong social support are key to minimising the long-term outcomes for the families.

Project length
5 months

Supervisor
Ruth-Helene Melioranski

There is no one way of being

The third and fourth wave feminism stresses that there is no one way of being a woman. Interpreting this, there is really no one way of being and experiencing life. In my work, it became very clear that the issue of stillbirth has greatly been hurt by being defined as a women’s issue. Firstly, women’s issues just lack the attention, but also, it is not only the mother who feels the loss, both of the parents and often grand-parents and social circle, grieve for the child that they were expecting to welcome. So, the feminist perspective gave me an angle to look at the impact without leaving anyone out and without aiming to define the experience, but rather see the different ways families go through this.

In the research I conducted seven interviews with experts and bereaved parents and backed up the findings by research articles addressing the same topic and further desktop research and analysis of the current system in place.

Service design methodology
Human-centred design perspective
Constructive design research method
Feminist design perspectives framing

Current journey visualisation in the experience of stillbirth

Mapping out the current experience of the family I saw that although in Estonia the available support is offered through the perspective of stillbirth being a medical issue, the impact of it reaches into all aspects of life for the family.

The hospital experience is fairly linear, structured by the clinic’s procedures, but following that, the journey is fragmented and the support and information difficult to come by.

Themes in stillbirth

From the analysis I distilled the main themes that currently describe the experience of stillbirth.

Needs

Corresponding to these themes surrounding stillbirth, are the needs:

Considering the service ecosystem

Currently, not a lot of attention has been drawn to stillbirth, the support available is fragmented and the journey in its whole has not been considered. Regardless, there is an existing ecosystem to build upon, which offers opportunities such as proactive state mindset, data mobility and cooperation with the current community and third sector.

My design concept to answer the needs is a comprehensive platform, best explained through this simplified systems map. The bilateral map’s left side visualises the systems view, while the right side illustrates the user interaction points and journey. The goals for the platform are listed on the right and the overarching common system elements and the foundation for the platform experience is described in the middle of the map. The platform’s inner layers can be accessed through logging in with state ID, the platform is proactively available to the families from the diagnosis by the doctor in Digilugu.

Proactive state layer

Relevant, personalised info

All needed information is pro-actively available to the family in an understandable structured manner from the moment of the diagnosis.

Customised tone of voice

The manner of communication depends on a personal preference. Achieving the right tone of voice has a large positive impact on the person’s ability to process information.

Sharing the burden of proceedings

Both parents are now equal in the event and the following proceedings and can share the responsibilities. The state also enables to give a mandate to a trusted person to deal with the proceedings when the parents are not able to.

Proactively managed bureaucracy

Today’s data management capabilities allow to initiate proceedings proactively, lessening the paperwork, but also to customise the information given. For example, parents can choose whether or not they would like to list a name for the child. Such changes may seem small, but can mean a lot to the parents both ways.

Sharing info and managing communications with social circle

Initially it is difficult to communicate the loss to others, however, it is often inevitable. Handling the communication of the loss and the family’s needs and additionally giving access to information and support in one go lessens the burden and empowers the social circle.

Memento memory-making tool

Grieving for a child who was lost before they were born is difficult for everyone. The lack of personal memories with the child makes it hard to place the loss. 

There are a few digital recordings from the child during the medical check-ups, hand- and footprints are taken after the stillbirth and the social worker takes pictures of the child for the family. Additionally there are the pictures taken during the pregnancy, but most of all, the hopes and dreams for the child can take the place of memories.

Memento is a tool for individual discreet memory making. It is important to build personal connections with the loss in grief to be able to place the emotions. Digital tool can allow all who need it an access to memory building. 

Grief is non-linear process and a hard wave can hit unexpectedly. As Memento hides in the smartphone or computer, it doesn’t raise attention.

It holds the evidence of the realness of the loss for the user and allows to build a connection with the child.

The user can create and organise the memories in the manner that fits them using either text, photos, video or audio or combine these.

Customisable themes

In order to relate with the memories made, Memento must fit the person. The application is customisable through choosing between different themes, and as the layout depends on the content created and the way the memories are organised, the user’s experience is unique to them.

Stories

Stillbirth is difficult to relate with for the bereaved parents and for their social support network, therefore it is important that they all have access to stories shared by other people who have gone through the same experience. It is important not to feel alone in the loss.

The Stories website collects experiences from the community and advice from experts and makes these available for the bereaved families and social support network.

Structure for sharing

To enable sharing of variety of experiences safely, structure is required. The content is created by community and related experts. Stories structure supports various media posts.

Setting interests and triggers

To avoid triggering content, a user can hide themes that they are not ready to see. Similarly they can set their interests for the content to be filtered accordingly. The settings are pinned and always accessible to allow and encourage making changes.

Safe, layered access

Log-in layer allows for secure sharing of stories within the community, public view gives access to more general knowledge and stories.

Curation by the community

To make sure there is a variety of content and that all experiences are supported, the community and related non-profit organisations help curate the content.

Outwards communication

Allowing public access to layers of information that empower the by-standers to offer better support is a step towards lessening the burden and taboo from the topic, giving a voice to the community.

Platform connecting support

The platform is supported by small acts of kindness that in combination support the experience greatly. These include, but are not limited to:

Bodily recovery kit

Although after the stillbirth, the mother’s bodily changes are identical to the changes after a live birth, it is difficult make use of the products and services marketed to new mothers as these harshly remind of what went wrong. The mother is handed a kit when leaving the clinic that is filled with white label products easing the bodily recovery. The benefit of such kit is that the mother already has the products she needs to aid the bodily recovery and rebuilding the positive relationship with her body, therefore she is more likely to use these and does not have to question whether she is entitled to such products entirely.

Partner’s leave can be started by the gynaecologist

For a doctor to start a medical leave, the person needs to be their patient. Currently, the mother is the patient and father’s medical leave should be discussed with the GP. Seemingly small difference can have a large impact on the bereaved family’s wellbeing if both of the parents’ leaves can be issued simultaneously at the clinic.

(Volunteer) network of professional photographers

When parents decide to spend the time with their child after birth, it is an important time for building a connection with the lost child and making memories. Currently the social worker takes pictures of the child so that the family can have mementos of these moments. Professional photographers are, besides being able to take beautiful pictures, able to make the people feel at ease and bringing out the beauty in the moments without overstepping the boundaries. These photographs are the only ones of the family together with the child and therefore worth the extra consideration. Photographers can join this initiative volunteer-based and knowingly.

Kids’ stores allowing products to be returned

Many families prepare for the arrival of the baby during pregnancy by setting up the kid’s room and purchasing items. These feed the family’s excitement in expecting. However in stillbirth, these suddenly become difficult reminders of the loss and the family may struggle to how to handle the situation. As the products remain unused, these do not lose value. The platform enables the kids’ stores to sign up to pledge to take the products back whenever the family feels ready. This information is communicated through the information layer of the platform. The eligibility is given immediately once the diagnosis is connected with the profiles and the store is able to confirm it through the ID of the parents or the mandate.

Journeys

To illustrate the concept and how it allows for an individual experience, allowing to support and include all people that may need it, here’s Jan and Helena, best friend Paul, Helena’s mother Eve and Helena’s HR manager Evelyn.

Side by side, it’s visible how the journeys differ. The platform is meant to enable non-linear journeys supporting all who might need it, the way they need it, regardless of their position.

Feedback and future

The feedback on the concept from the experts is promising and positive, expressing how it understands the needs of the bereaved parents on a deep level. The concept will be further introduced and discussed with the non-profit organisations and state levels involved in the topic and hopefully will become to inform the future decisions.

Although in my thesis I focused on the experience of stillbirth, I see the platform supporting all perinatal losses if the content is extended accordingly.

Conclusion

Stillbirth is a loss of which the impact is misjudged as influencing only the bereaved parents and mostly the mother. Consequentially the experience has received insufficient attention in society and by the state.

The design concept supports the bereaved family and the social support network in dealing with the aftermath of stillbirth through a three-level interconnected platform that is part of the digital state services. It offers the bereaved families the opportunity to manage the loss and their experience in a manner that is most suited for them. The platform offers support not just to the bereaved parents, but to further families and social support network to lessen the taboo and enable people to feel informed and empowered in their decisions and communication about the loss.

My hope is that the thesis offers an insight to the experience of stillbirth and points towards the opportunities in supporting not just the parents, but the whole social support network surrounding them as it is important never to feel hopelessly alone. Stillbirth is not seen in our society, when not talking about it adds up, here is to hoping that this thesis may lead to even just one conversation, that then, in turn, can start adding up.