“It’s not who I am”: children’s experiences of growing up with a long-term condition in England, Australia and New Zealand.

Bernie Carter, Karen Ford, Lucy Bray, Tineke Water, Janine Arnott, Cassandra Tichanow, Annette Dickinson

Research output: Contribution to journalArticle

1 Citation (Scopus)
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Purpose: This study aimed to explore children’s perceptions and understandings of how their lives are shaped (or not) by a long-term condition and its associated management. Design and Methods: A qualitative, participatory methodology using auto driven photo-elicitation interviews with 45 purposively recruited children aged 6-12 years from England, New Zealand and Australia was utilised. Results: Interpretative thematic analysis resulted in an over-arching theme, ‘It’s not who I am…’ but it’s part of me, and three sub-themes: getting on with my life; the special value of family, friendship, support and comfort; and things that get in the way of getting on. Practice Implications: Pediatric nurses should be aware that across all ages and across the three countries the boys and girls actively projected their self-concept as ‘well’ children and were active agents in presenting themselves as ‘normal’ children. However, their identity as a ‘normal child’ was bound to their identity as a child with a long-term condition.
Original languageEnglish
Pages (from-to)1-10
JournalJournal for Specialists in Pediatric Nursing
Issue number4
Early online date26 Sep 2017
Publication statusE-pub ahead of print - 26 Sep 2017



  • Long-term condition
  • chronic illness
  • children’s perceptions
  • identity
  • self-concept
  • agency
  • normal
  • well

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