Children’s and adolescents’ experiences of living with cancer
evidence and practice    

Children’s and adolescents’ experiences of living with cancer

Stefan Nilsson Associate professor, Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden
Annie Eriksson Paediatric Cancer Centre, The Queen Silvia Children’s Hospital, Gothenburg, Sweden
Anna Sörman , Barn- och ungdomsmedicinsk mottagning, Gothenburg, Sweden
Ulrika Kreicbergs Professor, Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke, University College, Stockholm, Sweden
Malin Lövgren Associate professor, Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke, University College, Stockholm, Sweden
Margaretha Jenholt Nolbris Associate professor, Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden

Why you should read this article:
  • To recognise the need to include the perspectives of children and adolescents with cancer in research and practice

  • To identify the value of seeking children’s and adolescents’ perspectives in developing child-centred interventions

  • To gain a greater understanding of the experiences of children and adolescents following a diagnosis of cancer

Background All healthcare professionals working with children should have a child-centred perspective, and should be responsive to children and adolescents who want to talk about their thoughts and feelings. The child’s or adolescent’s story is the starting point for mutual understanding between them and the healthcare professional, and is the basis for shared decision-making between patients and healthcare professionals in child-centred care.

Aim To advance understanding of how Swedish children and adolescents with cancer perceived the effects of the disease and its treatment on their everyday life.

Method Ten girls and five boys, aged between five and 18 years, with cancer were interviewed individually using four communication tools. The interviews lasted between 20 and 65 minutes and took place without their parents present. The data were analysed using content analysis.

Findings Transition to an unpredictable everyday life was identified as a main theme, with five subthemes: struggling with side effects of the cancer and its treatment; treatment as an ‘emotional rollercoaster’; changed self and being vulnerable; changed social life; and concerns about academic achievement.

Conclusion To provide effective support and care for children and adolescents with cancer, healthcare professionals should strive to listen to them and focus on their perspectives.

Nursing Children and Young People. doi: 10.7748/ncyp.2020.e1304

Peer review

This article has been subject to open peer review and has been checked for plagiarism using automated software

Correspondence

stefan.nilsson.4@gu.se

Conflict of interest

None declared

Nilsson S, Eriksson A, Sörman A et al (2020) Children’s and adolescents’ experiences of living with cancer. Nursing Children and Young People. doi: 10.7748/ncyp.2020.e1304

The authors would like to thank all the children and adolescents who participated in the study and so generously gave their time and shared their experiences

Published online: 23 November 2020

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