Health literacy amongst children living with a long-term condition: ‘What I know and who I tell'

Blake Peck*, LUCY BRAY, Annette Dickinson, Julie Blamires, Daniel Terry, BERNIE CARTER

*Corresponding author for this work

Research output: Contribution to journalArticle (journal)peer-review

1 Citation (Scopus)
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Background: There is little known about the health literacy of children living with long-term condition. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators for sharing information about their condition with others.

Design: A child-centred qualitative arts-based approach with children aged 6-12 years.

Setting: Children participated from three countries – the United Kingdom, Australia and New Zealand.

Method: A participatory arts-based qualitative child-centred approach prompted children to draw, label and use stickers, body-outlines and collage to facilitate them to describe elements central to health literacy. This encompassed their long-term condition, their understanding concerning their condition, its management, and the decision-making associated with sharing information about their condition with others. The sessions were audio-recorded, and reflexive thematic analysis was undertaken.

Results: Four central themes related to key elements of child health literacy: (1) Pragmatic Understanding – What it feels like and what happens in my body, (2) Management Regime – What do I have to do to keep on going, (3) Information Sharing – I don’t tell random people, and (4) Benefits of Sharing – They’ve got my back.

Conclusion: Children indicated a pragmatic or process type understanding of their condition and its management. Further, children were discerning with whom they share information about their condition but tended to establish a network of well-informed peers capable of providing support if needed. Despite gaps in children’s health literacy, parents and families have an important role in checking children’s understandings and developing critical health literacy.
Original languageEnglish
JournalHealth Education Journal
Early online date4 May 2023
Publication statusE-pub ahead of print - 4 May 2023


  • Health education
  • Health literacy
  • Qualitative
  • Arts-based
  • Child-centred
  • Social network


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