'Dismantled from the inside out': Finding connection after child loss

For Kimberly Stevens, the constant acute grief that losing a child brings is a feeling almost impossible to explain.

But when she's with other bereaved parents, she doesn't have to.

"I get this feeling of comfort … it just kind of feels like I'm home almost," Ms Stevens said.

When her son Ethan died in 2021, she found there was little support for those who'd lost a child, especially in remote areas like the mining town of Moranbah in central Queensland, where she lives.

The family were told of Ethan's diagnosis of T-cell acute lymphoblastic leukemia on Christmas Day in 2020.

Nine weeks later, 13-year-old Ethan died, after contracting fungal pneumonia during chemotherapy treatment.

"It was really quite quick and very traumatic," Ms Stevens, who is also a psychologist, said.

Grieving and still caring for her younger son, Ms Stevens found that although services for this type of loss were scant, there was something that did help — speaking to others who understood.

"When you sit down with someone who is on that same journey, there's so much that doesn't need to be said," she explained.

"You're not constantly thinking that you need to explain how you're feeling. If you're crying one second, then laughing the next, it's OK because the other person understands.

"It can be a lifeline … it certainly was for me."

Wanting to extend that lifeline to others, where remote locations would not be a barrier, the idea to create an app, where bereaved parents could connect with each other, was born.

After three years of work, she launched Kids Connecting Parents last year.

She is now preparing to present its early findings at the European Grief Conference in Portugal in September.

It comes as interest in "digital grief tools" is increasing, according to University of Queensland senior lecturer in clinical psychology Fiona Maccallum.

She said there was a need for a more comprehensive approach to bereavement support, including social networks as well as peer and professional support.

"Not everyone is going to need to make use of all of them, but we need to make them available for people who are seeking these different forms of support," Dr Maccallum said.

"[Apps like this] could also provide people with a sort of road map for the future from people who've been where they are now."

After connecting with parents in her area via the app, Ms Stevens said the group had gone on walks, done yoga and had coffee.

Funding difficulties

In the remote NSW town of Broken Hill, grieving father Jason King downloaded the app after losing his 18-year-old daughter Jordan to suicide in 2023.

"When you lose a child, it really is like you've been completely dismantled from the inside out and you're never going to put yourself back together the same way again," he said.

"But having someone there to help you put the pieces back and take stock well into the future as that journey unfolds, is such an important piece of the puzzle."

As a filmmaker, Mr King channelled his grief into founding the Jordan Liberty Project, involving a documentary, currently in development, about youth mental health and the journey of laying Jordan's ashes to rest.

He said there was power "in harnessing the people who are actually going through the stuff on the ground".

Dr Maccallum said while these types of digital tools did not replace professional support, they could work well alongside it.

It was something Ms Stevens reiterated.

"As a clinician, I'm hoping to keep exploring how peer support can sit along professional grief care," Ms Stevens said.

However, she said grant funding was difficult to secure, something she first discovered when trying to get the app off the ground.

She instead turned to online fundraising and went down the path of private enterprise to launch the app, partnering with animation studio Motion Curve.

Dr Maccallum said the difficulty with funding was that grief support didn't have a "single government department or scheme".

"While there are some good supports available and emerging, they are often siloed and hard to find or access, and there is a reliance on donations and philanthropy to fill gaps, which raises concerns about long-term sustainability," she said.

For Ms Stevens, making the app sustainable and accessible to grieving parents, long term, was a goal she wasn't going to give up on.

"We want to bring those people together, to feel supported."

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