Adolescents with sickle cell anemia submitted to hematopoetic stem cell transplantation: post-treatment experiences

Abstract

Sickle cell anemia (SCA) is a genetic disease belonging to the sickle cell group, determined by homozygous hemoglobin S - Hb SS and is characterized by the form of greater clinical severity, being also the most prevalent. The only treatment with curative possibility for sickle cell anemia is Hematopoietic Stem Cell Transplantation (HSCT). HSCT has an important impact on patients' lives, and each individual will experience this stage differently, according to their previous experiences, the support they have access to throughout the process and also with regard to their moment of life. . Regarding this last aspect, it is known that adolescence is a stage of human development characterized by a series of biological, psychological and social transformations. It is in this adverse context that the question of the present study emerges: what is the perception of adolescents diagnosed with sickle cell anemia about HSCT and its possible impacts and consequences on its development process? Thus, the objective is to describe the sociodemographic and clinical characteristics of the participants; investigate the support network to which each participant had access during the HSCT; and to know the perception of adolescent patients about HSCT, encompassing physical, psychological and social aspects, and the possible consequences that the disease and treatment have in their lives. This is a qualitative and cross-sectional study with multiple case studies. The sample will be composed of adolescent patients diagnosed with sickle cell anemia, aged between 12 and 18 years old, of both sexes, linked to the Bone Marrow Transplant Unit of the Clinical Hospital of the Ribeirão Preto Medical School - HCFMRP-USP. Ten patients will be interviewed, enrolled consecutively and scheduled for consultation at the Post-HSCT outpatient clinic during the year 2020. For data collection will be used the instruments: semi-structured interview script and Economic Classification instrument Criteria Brazil. Data collection will be performed individually, face to face, during a meeting, which will take place in a preserved environment in an outpatient room, safeguarding the principles of comfort and privacy. The interview will be recorded with the consent of the participants and the consent of their responsible. Data collection is estimated to last approximately 30 minutes. The interviews obtained from audio-recorded record will be transcribed in full and literally, respecting the sequence and the way the speeches were presented. Subsequently, the data will be subjected to thematic content analysis. It is expected to understand the resumption of adolescents' experience after HSCT, aiming at improving the intervention strategies of the multidisciplinary team. (AU)