Parents with cancer are turning to AI and TikTok for advice – but can they trust what they find?
As the NHS increasingly embraces social media platforms such as TikTok to combat health misinformation, new research from Ulster University raises important questions about the quality of the advice families receive when they turn to the internet for help.
Published this week in PLOS Digital Health, the study, conducted in conjunction with the University of Strathclyde, evaluated the quality, reliability and readability of information available online for adults with cancer who have significant caregiving responsibilities for children.
Funded by National Institute of Health Research, researchers examined resources across Google searches, YouTube, TikTok and popular artificial intelligence (AI) platforms including ChatGPT, Gemini, DeepSeek and Meta AI.
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Results show reliance on digital platforms
The findings show that while families increasingly rely on digital platforms for support during one of the most challenging periods of their lives, online information varies in quality and reliability.
Researchers found that websites surfaced through Google searches – particularly those produced by established cancer charities and healthcare organisations – provided the highest quality and most reliable guidance for families. In contrast, information generated by AI tools and content shared on TikTok generally scored significantly lower for quality and reliability.
Dr Jeffrey Hanna, Lecturer in Clinical Cancer Nursing at Ulster University, and South Eastern Health and Social Care Trust, and senior author, said:
"When a parent receives a cancer diagnosis, one of the first things many do is search online for advice about how to support their children. Families are looking for answers at an incredibly distressing time, so it's vital that the information they find is accurate and trustworthy.
"What we found is that good-quality advice does exist online, but families can be exposed to resources of very different standards depending on where they search."
The study analysed 144 online resources and found significant differences between platforms. While AI-generated responses were quicker to read and often provided immediate answers, they frequently lacked the depth, detail and reliability offered by established sources. TikTok videos attracted the highest levels of user engagement but were among the lowest-scoring resources for overall quality and reliability.
The health literacy challenge
The research also highlighted a significant health literacy challenge.
Despite websites providing the best quality information overall, most written resources across all platforms required a reading age of around 15 years. Researchers warn this could create barriers for adults with lower literacy levels and families already experiencing social and economic deprivation.
Lisa Strutt, report co-author with lived experience of the issue, said:
"We know families often leave clinical appointments overwhelmed and needing further support. Many will naturally reach for their phones and search online.
"The concern is that even where high-quality information exists, it is not always written in a way that everyone can understand. If information is too difficult to read, it risks missing the very people who need it most."
The study also found a lack of tailored support for many families, including single-parent households, blended families, culturally diverse communities, families with neurodivergent children and those facing end-of-life situations.
Researchers believe healthcare professionals have a vital role to play in signposting families towards trusted sources of support, rather than leaving them to navigate an increasingly complex digital landscape alone.
At the same time, the team says AI could form part of the solution in the future by helping trusted health information be adapted into different formats, reading levels and languages – provided robust quality controls are in place.
Professor Cherith Semple, Professor in Clinical Cancer Nursing at Ulster University and South Eastern Health and Social Care Trust added:
"The conversation shouldn't be whether people use AI and social media for health information – they already do.
"The challenge for healthcare providers, policymakers and technology companies is ensuring the information people receive is evidence-based, accessible and appropriate for their circumstances.
"This is about supporting families and children at one of the most difficult moments in their lives."
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Professor Liam Maguire, Pro Vice-Chancellor for Research at Ulster University, said:
"When families are dealing with the life-changing impact of a cancer diagnosis, they need information they can trust. As more people turn to AI tools and social media for health advice, this timely research highlights why quality, reliability and accessibility matter more than ever. This research provides an important contribution to the wider national conversation about how social media and AI can support healthcare while ensuring patients and families are guided towards trusted sources of information."
The research forms part of Ulster University's internationally recognised Family-centred Cancer Care programme, which seeks to improve support for children and families affected by cancer across the care journey.
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