‘Trying to catch up with life’: The expectations and views of adolescent survivors of childhood acute lymphoblastic leukaemia about long-term follow-up care: A qualitative research


Arpaci T., ALTAY N., Yozgat A. K. , Yaralı H. N. , Özbek N. Y.

European Journal of Cancer Care, 2022 (Journal Indexed in SCI Expanded) identifier identifier

  • Publication Type: Article / Article
  • Publication Date: 2022
  • Doi Number: 10.1111/ecc.13667
  • Title of Journal : European Journal of Cancer Care
  • Keywords: acute lymphoblastic leukaemia, adolescent, long-term follow-up care, psychosocial supports, qualitative research, survivors

Abstract

© 2022 John Wiley & Sons Ltd.Objective: The aim of this study was to explore adolescent survivors' views and expectations about long-term follow-up care. Methods: Semi-structured, in-depth interviews were conducted with 16 adolescent survivors of childhood acute lymphoblastic leukaemia. Survivors who had completed treatment at least 2 years ago were involved in the study. Interviews were audio-recorded and transcribed verbatim. An inductive thematic approach was used to analyse the data. Results: Four main themes and sub-themes were identified from the analysis as follows: information needs with three sub-themes ‘long-term follow-up, healthy life and social life’, support needs with three sub-themes ‘psychosocial (peer relations etc.), school related and social–emotional (fear of relapse, body image, self-esteem, etc.)’, perceived benefits with two sub-themes ‘social–emotional and related to long-term follow-up’ and perceived barriers ‘medical-hospital related and social life’. Conclusions: Adolescent survivors mainly need support in terms of psychosocial aspects: self-esteem–body image, school, peer relations and social activities during follow-up. Identified barriers related to follow-up were school absence and not able to participate social activities. Adolescents specify health promotion approaches as benefits aspects of follow-up. The findings of this study will guide nurses in the long-term follow-up care of adolescent survivors of acute lymphoblastic leukaemia and provide an opportunity to plan individualised follow-up care.