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The Osteosarcoma Listening Project
the osteosarcoma listening project
welcome
The Osteosarcoma Listening Project is a parent-led research initiative gathering stories from parents whose child, like my own, was diagnosed with osteosarcoma.
Through one-to-one interviews or written submissions, I'm exploring whether these real-life accounts—when brought together—can offer new insights into this devastating disease.
This is not about finding a cause. It’s giving voice to our children's stories, and hearing them not as anecdote, but potential evidence.
about
My name is Ruth, and my son Fergus died in May 2022,. As I looked back on his experience, I began to realise how little attention had been given to his life before his osteosarcoma diagnosis, or to insights parents might offer. Our children are not just hosts to a disease- they have lives,. We were there from the start and as the disease unfolded. We were there throughout their treatment and beyond. In a disease that is still so poorly understood, this lack of curiosity felt more and more like a missed opportunity.
This project brings the child- and the people who know them best- into the very heart of research.
The Osteosarcoma Listening Project invites parents and primary caregivers to tell or write their child’s story— perhaps even from birth, their interests and personality, to the earliest signs that something might be wrong, through diagnosis and treatment, and beyond. Anything that is significant to you or has perhaps become significant with hindsight, These stories will not be edited or reshaped to inspire or reassure.: the purpose is to explore whether these personal, unfiltered narratives might reveal common threads—experiences or intuitions—that could raise new questions for researchers and deepen our understanding.
This project comes from a hope that by listening carefully, we might notice things. Perhaps shared experiences, small details, or quiet instincts could help shape new questions and support future research.
It is grounded in the belief that parents are more than observers of their child’s journey. We are witnesses.
You can tell your story in any way that suits you. Nothing is off-limits- it's your and your child's story.
Submissions- either in writing or recorded- will be read then analysed collectively (using narrative research techniques and software) to look for patterns and themes. Findings will be made available to all participants as well as the research, medical and charity sectors. You are asked to sign a consent form before you submit any contribution which can be found at the bottom of this page.
If it would be helpful, you can find a framework here..
Wherever you are in the world, however much or little you want to say, your contribution is valuable.
As a fellow parent, I approach this work not as a researcher, but as a peer—someone who understands the heartbreak and the strength it takes to tell these stories.
what does it involve?
participant information
This explains more about the aims of the project, what taking part involves, and how your contribution will be used. If you would like to contribute, please read it carefully.
What is this project about?
The Osteosarcoma Listening Project is a peer-led research initiative. I’m asking parents and carers to write or talk about their child: Their life and interests before diagnosis, to the very early signs something was wrong, through treatment, and beyond. In insolation things may not seem relevant or only appeared relevant to you in hindsight, but taken together they may reveal things that traditional research has missed, or not thought to ask.
The aim is to see if lived experience reveals insights, or allows overlooked questions to emerge that could contribute meaningfully to our wider understating of the disease.
Even if there is just one thing you want to say right now, please take part.
Who can take part?
Anyone who is a parent, carer or guardian of a child who has had a diagnosis of osteosarcoma.
How can I take part?
You can contribute to the project in one of three ways:
•Written submission: write your story or thoughts at your leisure and email it to me.
•Audio recording: You can record your story and send the file.
•Interview: I can arrange a time to speak with you (via phone or online), and I will guide the conversation with open questions which you can review in advance. Interviews will be recorded and transcribed.
You can say as much or as little as you wish. There are no right or wrong”answers — the focus is on your child, and your lived experience. There is a framework that you can use or refer to if you wish.
What happens then?
Your submission will be:
• Stored securely and treated with care.
•Analysed alongside others' using qualitative research methods.
•Used to look for shared themes, patterns or insights that may inform future research into osteosarcoma. With your permission, short quotes may be included in reports, on the project website, or shared with researchers. All submissions will be anonymised.
Do I need to sign anything?
Yes — you are asked to fill in a short consent form before your story is included in the research. This confirms that you understand the project and agree to take part.
You can withdraw your consent at any time without giving a reason.
Questions?
If you have any questions please email: info@oslisteningproject.com
consent form
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