Absolutely! It’s been incredible working on projects with different parents over the years, hearing again and again that shame, blame - and how services/systems sometimes deepen that.

Very keen to connect with others - reposts, signposts, info etc all gratefully received!

It strikes me that a framework for parent support is needed, that pulls out commonalities for parents across the different children’s needs, whilst seeking to acknowledge the differences and important features of different circumstances. Not sure how to take this forward and keen to gain input

Thanks Charlie! I’ve been involved in various projects over the years for “interventions” for parents of kids with various needs, and noticed that pattern of isolation, huge co-ordination demands, numerous practical challenges, then also those internal psych processes of self-blame, worry etc.

Thank you for coming to my TED Talk 🎤

If you’ve read this far and still need convincing, please check out our preprint arxiv.org/abs/2511.04820 and this infographic: doi.org/10.5281/zeno...
10/10

We’re asking research funders & universities to step up because together, they have the leverage - and frankly, the responsibility - to stop the drain and redirect billions currently flowing to commercial publishers 💸 back into community-owned systems that serve science, not profit.
9/n

Can you imagine what else we could do with that money?
Fund researchers, students, labs, infrastructure… which all sounds better to me than enriching a publishing oligopoly. 3/n

Why? 🤑
In just the last 5 years, 4 publishers made $US 41 billion in revenue and $14.7B in profit - money that largely comes from taxpayer-funded research budgets.

For context: the entire 2024 NSF budget was $9B USD.
@elsevierconnect.bsky.social made $3.9B that year at a 38% profit margin. 2/n

This is not a research project itself, rather an attempt to make connections with other researchers or practitioners, to start talking ideas. We are looking for funding to do discussions directly with parents - so look out for future news!

Are you interested in meeting to discuss research, to plan potential research funding applications, sharing ideas? Join our new network focused on how to support parents, primarily with their own wellbeing re impact of their child’s additional needs. See first message for the link…

Is there a way we can develop a framework for services to improve how they think about the parents' wellbeing, within services for the child and family? Perhaps there are ones with parents of children with some needs, but not others. Or, have we missed it, and it already exists?