A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals

Behavioral Sciences

Maurizio Mascarin¹  Francesca Bomben¹  Domitilla Elena Secco²  Giuseppe Maria Milano²  Carlo Alfredo Clerici³  Federico Mercolini⁴  Marco Spinelli⁵  Paola Quarello⁶  Marina Bertolotti⁶  Andrea Ferrari⁷  Assunta Tornesello⁸  Maria Antonietta Annunziata⁹ 

[1] AYA Oncology and Pediatric Radiotherapy Unit, Centro di Riferimento Oncologico IRCCS, 33081 Aviano, Italy;Department of Hematology/Oncology, Cell and Gene Therapy, IRCCS Bambino Gesù Children’s’ Hospital, 00165 Rome, Italy;Department of Oncology and Hemato-Oncology, University of Milan, 20133 Milan, Italy;Department of Pediatric, Ospedale Centrale di Bolzano, 39100 Bolzano, Italy;Pediatric Hematology-Oncology Department, “Fondazione MBBM”, Ospedale San Gerardo, 20900 Monza, Italy;Pediatric Onco-Hematology Unit, Stem Cell Transplantation and Cellular Therapy Division, Azienda Ospedaliera-Universitaria Città della Salute e della Scienza, Ospedale Regina Margherita, 10126 Turin, Italy;Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, 20133 Milan, Italy;Pediatric Oncology Unit, Ospedale Vito Fazzi, 73100 Lecce, Italy;Psycho Oncology Unit, Centro di Riferimento Oncologico IRCCS, 33081 Aviano, Italy;

关键词: adolescents;    AYA oncology;    textual analysis;    experience of disease;    professional education;   

DOI  :  10.3390/bs12050120

来源: DOAJ

【 摘 要 】

Patient input is critical for all aspects of value-based healthcare design. This contribution describes the following: the specifics of communications with doctors regarding the disease in adolescents and young adults with cancer; the patients’ thoughts, emotions and changes in self-perception; “other meanings” taking shape along the treatment pathway; and reacting modes to the disease and treatments. Thirty-five Italian AYA patients in follow-up (age 18–24) were involved in a plenary interview on the cited aspects of their oncological experience. The answers were analyzed by MADIT (Analysis Methodology of Computerized Textual Data) with the software SPAD. MADIT allowed us to perform text analysis, describe the graphical outcomes and discuss the results. Respondents took a first-person perspective and their personal narrative recall had objective and unequivocal connotations. Experience was narrated mainly by maintenance repertoires that fix the reality of disease, its treatments and personal identity. The account focused on the tumor and on an agreed approach to it. The time “after” was described as a distressing space that defines them. Making sense of the events was considered a significant help. Professionals need to focus on the discursive repertoires of communication with which the inner and outer reality are built. Lastly, these patients required a two-way dialogue throughout the entire caring process.

【 授权许可】

Unknown