A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals
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; “oth...
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-04-01
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| Series: | Behavioral Sciences |
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| Online Access: | https://www.mdpi.com/2076-328X/12/5/120 |
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| author | Francesca Bomben Maurizio Mascarin Giuseppe Maria Milano Paola Quarello Marco Spinelli Assunta Tornesello Carlo Alfredo Clerici Federico Mercolini Domitilla Elena Secco Maria Antonietta Annunziata Andrea Ferrari Marina Bertolotti |
| author_facet | Francesca Bomben Maurizio Mascarin Giuseppe Maria Milano Paola Quarello Marco Spinelli Assunta Tornesello Carlo Alfredo Clerici Federico Mercolini Domitilla Elena Secco Maria Antonietta Annunziata Andrea Ferrari Marina Bertolotti |
| author_sort | Francesca Bomben |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-10T03:20:39Z |
| format | Article |
| id | doaj.art-a864e0984d644c6ba4bafdf7468bbdd1 |
| institution | Directory Open Access Journal |
| issn | 2076-328X |
| language | English |
| last_indexed | 2024-03-10T03:20:39Z |
| publishDate | 2022-04-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Behavioral Sciences |
| spelling | doaj.art-a864e0984d644c6ba4bafdf7468bbdd12023-11-23T10:04:48ZengMDPI AGBehavioral Sciences2076-328X2022-04-0112512010.3390/bs12050120A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health ProfessionalsFrancesca Bomben0Maurizio Mascarin1Giuseppe Maria Milano2Paola Quarello3Marco Spinelli4Assunta Tornesello5Carlo Alfredo Clerici6Federico Mercolini7Domitilla Elena Secco8Maria Antonietta Annunziata9Andrea Ferrari10Marina Bertolotti11AYA Oncology and Pediatric Radiotherapy Unit, Centro di Riferimento Oncologico IRCCS, 33081 Aviano, ItalyAYA Oncology and Pediatric Radiotherapy Unit, Centro di Riferimento Oncologico IRCCS, 33081 Aviano, ItalyDepartment of Hematology/Oncology, Cell and Gene Therapy, IRCCS Bambino Gesù Children’s’ Hospital, 00165 Rome, ItalyPediatric Onco-Hematology Unit, Stem Cell Transplantation and Cellular Therapy Division, Azienda Ospedaliera-Universitaria Città della Salute e della Scienza, Ospedale Regina Margherita, 10126 Turin, ItalyPediatric Hematology-Oncology Department, “Fondazione MBBM”, Ospedale San Gerardo, 20900 Monza, ItalyPediatric Oncology Unit, Ospedale Vito Fazzi, 73100 Lecce, ItalyDepartment of Oncology and Hemato-Oncology, University of Milan, 20133 Milan, ItalyDepartment of Pediatric, Ospedale Centrale di Bolzano, 39100 Bolzano, ItalyDepartment of Hematology/Oncology, Cell and Gene Therapy, IRCCS Bambino Gesù Children’s’ Hospital, 00165 Rome, ItalyPsycho Oncology Unit, Centro di Riferimento Oncologico IRCCS, 33081 Aviano, ItalyPediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, 20133 Milan, ItalyPediatric Onco-Hematology Unit, Stem Cell Transplantation and Cellular Therapy Division, Azienda Ospedaliera-Universitaria Città della Salute e della Scienza, Ospedale Regina Margherita, 10126 Turin, ItalyPatient 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.https://www.mdpi.com/2076-328X/12/5/120adolescentsAYA oncologytextual analysisexperience of diseaseprofessional education |
| spellingShingle | Francesca Bomben Maurizio Mascarin Giuseppe Maria Milano Paola Quarello Marco Spinelli Assunta Tornesello Carlo Alfredo Clerici Federico Mercolini Domitilla Elena Secco Maria Antonietta Annunziata Andrea Ferrari Marina Bertolotti 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 adolescents AYA oncology textual analysis experience of disease professional education |
| title | A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals |
| title_full | A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals |
| title_fullStr | A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals |
| title_full_unstemmed | A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals |
| title_short | A Textual Analysis for Understanding the Relations and the Identity Construction in Adolescent Oncology Patients: Retrospective Personal Views in Order to Educate Health Professionals |
| title_sort | textual analysis for understanding the relations and the identity construction in adolescent oncology patients retrospective personal views in order to educate health professionals |
| topic | adolescents AYA oncology textual analysis experience of disease professional education |
| url | https://www.mdpi.com/2076-328X/12/5/120 |
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