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

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.