'It was hard for me to be separated from my family, friends and school. I missed my home': how 'to survive' a malignant disease from the perspective of young people who have been cured

Autor: Anita Džombić
Jazyk: angličtina
Rok vydání: 2021
Předmět:
Zdroj: Hrvatska revija za rehabilitacijska istraživanja
Volume 57
Issue 1
ISSN: 1848-7734
1331-3010
Popis: Cilj istraživanja bio je steći potpunije razumijevanje iskustva preživljenja maligne bolesti iz perspektive izliječenih mladih osoba. U istraživanju je sudjelovalo dvadesetero mladih koji su se liječili od nekog oblika maligne bolesti (akutne limfoblastične leukemije (ALL), meduloblastoma, osteosarkoma, Ewingova sarkoma, Non-Hodgkinova limfoma i aplastične anemije). Primijenjena metoda prikupljanja podataka bio je anketni upitnik, a dobiveni su podaci analizirani metodom tematske analize. Generirane su tri glavne teme istraživanja: 1) saznanje o bolesti, 2) zahtjevni aspekti liječenja i 3) percipirani negativni i pozitivni ishodi oboljenja. Rezultati izvješćuju o reakcijama na dobivanje dijagnoze i o razumijevanju prirode bolesti. Upućuju na to da je za mlade tijekom liječenja bila zahtjevna socijalna izolacija, odvojenost od članova socijalne mreže, određeni medicinski postupci i nerazumijevanje od strane okoline. Bolest je utjecala na njihov tjelesni izgled i uzrokovala gubitak samopouzdanja i bezbrižnog djetinjstva, smanjenu mogućnost obrazovanja, smanjeni izbor aktivnosti slobodnog vremena te slabljenje društvenih kontakata. Unatoč nepovoljnim posljedicama bolesti prisutne su i one pozitivne koje mladi prepoznaju kroz povećanu zrelost i osobnu snagu te angažman u organizacijama civilnog društva koje se bave vršnjačkom podrškom oboljelima. Dobivene empirijske spoznaje sugeriraju potrebu za sveobuhvatnom psihosocijalnom podrškom oboljelima, tijekom i nakon aktivnog tretmana liječenja u područjima informacijske podrške, tjelesnog i mentalnog zdravlja, obrazovnih postignuća i vršnjačke edukacije.
The aim of this study was to gain a better understanding of the experience of surviving a malignant disease from the perspective of young people who have been cured. The study involved 20 young patients who had previously undergone treatment for a malignant disease (acute lymphoblastic leukaemia, medulloblastoma, osteosarcoma, Ewing’s sarcoma, Non-Hodgkin’s lymphoma, and aplastic anaemia). Data was collected using a questionnaire and results were analysed using the thematic analysis method. The three main themes of the study are: 1) realization of being seriously ill, 2) the demanding aspects of treatment, and 3) perceived negative and positive outcomes of the illness. The results describe the reactions of the children when they found out about the diagnosis and their understanding of the nature of the disease. The results indicate that the young people did not respond well to social isolation, separation from members of their social network, certain medical procedures, and the lack of understanding shown by their social circle. The disease had an impact on their physical appearance, self-confidence, and carefree childhood, as well as reduced their possibility of further education, choice of activities in free time, and weakened social contacts. In spite of the damaging consequences of the illness, these young people observed many positive impacts, including increased maturity, personal strength, and engagement in civil society organisations dealing with peer-to peer support. These empirical findings suggest the need for comprehensive psychosocial support programmes for young people suffering from malignant diseases, both during and after active medical treatment. These programmes should focus on improving information technology, physical and mental health, educational achievements and peer education.
Databáze: OpenAIRE
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