Like many parents, you probably turn to a range of sources when looking for advice and information to support your child – and like many parents, the quality and difficulty of this advice probably varies greatly!

‘Making information work for carers’ is a report by Tandm, commissioned by IHC last year. It interviewed a range of carers supporting someone with an intellectual disability, and gives insight into how carers and whānau find, use and trust information in Aotearoa New Zealand.

The research shows the main ways carers find information, and the pros and cons of each one…

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Health professionals and social workers

They are often the first point of contact that carers turn to for medical advice and guidance on navigating services and systems. However, many carers find information is not offered proactively.

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Google and official websites

For information about medical conditions, care strategies, funding and available services. In particular, the more condition-specific the website is, the more carers consider it to be a ‘turning point.’

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Social media and online support groups

Facebook, Reddit, and targeted online forums are key spaces for immediate, relatable answers, especially for rare or complex conditions. However, advice can be inconsistent and heavily shaped by personal experience.

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AI tools like Chat GPT

Although AI is becoming more commonplace, most carers were not using it and felt unsure how useful or trustworthy it is. Some worried about misinformation, while others didn’t see the value or had no time to explore new tools. While 77% have used AI-powered services, nearly half said they don’t trust companies to use AI ethically.

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Word of mouth and peer networks

Many carers rely on personal conversations with friends, other parents, community workers, or support group peers. They have lived experience and advice shared face-to-face can be practical, reassuring, and deeply trusted. But informal networks can vary widely in quality and availability.

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Printed materials and libraries

Pamphlets, books, and printed guides found at libraries, medical centres, or provided by support organisations remain an important source of information. They are easy for carers to refer back to and understand, but some people feel they are too general or out of date.

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Personal records and experience

Carers keep personal records, diaries, and lists (on paper or digitally) as carers often learn by trying different approaches and sharing what works with others, especially when official guidance is lacking or unclear.