Due to long-term hospitalization and therapy related conditions, survivors face significant problems. Long-term follow-up care is essential in order to provide physical, psychological, social and educational support to adolescents. In this way, it will be possible for adolescents to take on their own roles and responsibilities and to facilitate their adaptation to social life. The aim of this study was to explore adolescent survivors’ needs and expectations from long term follow up care.
In this qualitative study, semi-structured, in-depth interviews were conducted with 14 adolescent childhood leukemia survivors aged from 12-18. Adolescents who had completed treatment at least two years ago were involved in the study. Interviews were audio-recorded and transcribed verbatim. An inductive thematic approach was used to analyse the data. Written permission from the hospital and ethics approval was received from Ethics Committee and also verbal and written consent was obtained from adolescents and parents.
Three main themes and sub-themes were identified from the analysis as follow; Information needs with three sub-themes “long-term follow up, healthy life, social life (especially related school)”, Support needs with two sub-themes “psychosocial (peer relations etc.) and emotional (feer of relaps, body image, self esteem etc.) and Toughts about long-term follow up with two sub-themes “bariers (school, social life, hospital related, disease related) and benefits (emotional, social, disease control and health promotion)”. Most survivors think that long-term follow up is necessary and some of them stated that they feel relieved and safe after follow up visits.
The study implies that adolescent survivors of childhood leukemia mostly 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 to participate activities. Adolescents specify health promotion approaches as benefits aspects of follow-up.
Clinical trial identification
Legal entity responsible for the study
Has not received any funding.
All authors have declared no conflicts of interest.