'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


ARPACİ T., ALTAY N., Yozgat A. K. , Yarali H. N. , Ozbek N. Y.

EUROPEAN JOURNAL OF CANCER CARE, vol.31, no.6, 2022 (SCI-Expanded) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume: 31 Issue: 6
  • Publication Date: 2022
  • Doi Number: 10.1111/ecc.13667
  • Journal Name: EUROPEAN JOURNAL OF CANCER CARE
  • Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, Academic Search Premier, Biotechnology Research Abstracts, CINAHL, EMBASE, MEDLINE, Psycinfo
  • Keywords: acute lymphoblastic leukaemia, adolescent, long-term follow-up care, psychosocial supports, qualitative research, survivors, CANCER SURVIVORS, INFORMATION NEEDS, ADULT SURVIVORS, HEALTH, EXPERIENCES, PARENTS, RISK
  • Gazi University Affiliated: Yes

Abstract

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.