Assessment of suffering in Tunisian adolescents with sarcoma: A descriptive study

Amira Abbassi, Hatem Laroussi, Asma Ben Hassine, Amani Khalifa

Abstract


Introduction: Sarcomas are malignant mesenchymal tumours that develop in bone or soft tissue. The different types include osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, synovial sarcoma, and chondrosarcoma. These tumours predominantly affect children and youth aged 10 to 19. Sarcoma patients often experience multidimensional suffering encompassing physical, psychological, social and spiritual aspects. The aim of this study was to explore the suffering of Tunisian adolescents with sarcoma treated at the Salah Azaiez Institute of Oncology in Tunis.

Methodology: This descriptive quantitative study was conducted with 40 adolescents aged 10 to 19 years of age who were diagnosed with sarcoma and hospitalized at the Salah Azaiez Institute of Oncology. Two questionnaires were administered to participants once parental consent had been obtained: one sociodemographic questionnaire and the Adolescent Cancer Suffering Scale (ACSS), which had been translated into Arabic and validated.

The ACSS comprises 41 items on a five-point Likert scale, plus one open-ended question. It evaluates six realms of suffering: physical, psychological, spiritual, social, cognitive, and global. The ACSS is used to explore adolescents’ experience with their illness in a holistic manner, taking the multiple aspects of their suffering into account.

Results: More than half of the study respondents (55%) expressed the need to have their family present while they were in the hospital. Sadness and occasional pain were reported by 40% of adolescents. The same proportion (40%) found being forced to miss school particularly difficult. More than one third (35%) reported concerns about their future, while one quarter (25%) said they were still trying to make sense of their illness and their health experiences.

Discussion and conclusion: The cancer journey is a particularly challenging one, especially for a growing adolescent. Sarcoma patients face significant disruption in their lives, spending more time in the hospital than at school. Given the sudden emergence of symptoms associated with the disease, the existential threat it represents and the uncertainty it brings about for the future, it is important to embrace an approach that incorporates practices in line with the specific needs of adolescents in order to provide them with optimal care.

Keywords: sarcoma, suffering, adolescent, quality of life, Tunisia, nursing care, psychological distress

DOI:10.5737/236880763613


Full Text:

PDF

References


Ben Mansour, H. (2022). Les sarcomes d’Ewing de l’enfant. Mémoire soutenu en décembre.

Bonneau, J., Dugas, K., Louis, A., Morel, L., Toughza, J., & Frappaz, D. (2015). Scolarité et devenir social après un cancer dans l’enfance. Bulletin du Cancer,102 (7), 691–697.

Bergbom, I., Nåden, D., & Nyström, L. (2021). Katie Eriksson’s caring theories. Part 1. The caritative caring theory, the multidimensional health theory and the theory of human suffering. Scandinavian Journal of Caring Sciences, 36(3), 782–790. https://doi.org/10.1111/scs.13036. Epub 2021 Oct 5.

Bergbom, I., Nyström, L., & Nåden, D. (2022). Katie Erikson’s caring theories. Part 2. The theory of caritative caring ethics and the theory of evidence. Scandinavian Journal of Caring Sciences, 36(4),1251–1258. https://doi.org/10.1111/scs.13098. Epub 2022 Jun 23.

Coindre, J. M. (2010). Biologie moléculaire des sarcomes. Bull Cancer, 97(11), 1337–1345.

Creswell, J. W. (2014). Research design: Qualitative, quantitative and mixed methods approaches (4th ed.). Sage.

Creswell, J. W., & Guetterman, T. C. (2019). Educational research: Planning, conducting, and evaluating quantitative and qualitative research (6th ed.). Pearson.

Di Falco, G. (2023). Pourquoi moi ? Du sentiment d’injustice à celui d’acceptation [Internet]. Mon Cancer. Disponible sur : https://moncancer.com/articles/pourquoi-moi-du-sentiment-dinjustice-a-celui-dacceptation/

Eicher, M., Delmas, P., Cohen, C., Baeriswyl, C., & Viens Python, N. (2013). Version Française de la Théorie de Gestion des Symptômes (TGS) et son application. Recherche en soins infirmiers, 112(1), 14–25.

Erikson, E. (1963). Childhood and society (2nd ed.) Norton.

Erikson, E. (1968) Identity: Youth and crisis. Norton.

Erikson, E. (1972/1978). Adolescence et crise. La que?te de l’identite?. Flammarion.

Gameiro, M., & Lopes, M. (2015). Promoting a positive affect: An essential adaptive movement in Adolescents with Onco-hematologic Disease. Revista de Enfermagem Referência, 101–111.

Gaspar, N., Desandes, E., Orbach, D., Marec-Bernard, F., Redini, L., Brugières, L., & Corradini, N. (2016). Évolution de la prise en charge des sarcomes de l’enfant et de l’adolescent. Oncologie, 18, 216–229.

Gruffaz, Z. (2022). Dans quelle mesure la gestion des symptômes influence-t-elle l’image corporelle chez les adolescents dans un contexte de cancer? (travail de Bachelor), Haute école de Santé. https://sonar.ch/global/documents/322493

Hessissen, L., Kili, A., El Kababri, M., Nachef, M., Khorassani, M., Khattab, M. (2009). Impact psychologique et social chez des adolescents traités pour cancer pendant l’enfance. Expérience Marocaine. Psycho-Oncologie, 3, 24–31.

Jutras, S. (2012). Les bénéfices associés à l’expérience du cancer pédiatrique. Le point de vue d’enfants, d’adultes guéris et de parents. Les Cahiers Internationaux de Psychologie Sociale, 93(1), 159–180.

Khadra, C. (2012). Développement d’une échelle de mesure de la souffrance chez les adolescents ayant le cancer (thesis). Faculte des sciences Infirmieres, University of Montreal. http://hdl.handle.net/1866/8722

Khadra, C., Le May, S., & Lachance Fiola, J. (2015). Development of the adolescent cancer suffering scale. Pain Research and Management, 20(4), 213–219.

Mahfoudhi, M., Hariz, A., Ben Abdelghani, K.H., Turki, S., & Kheder, A. (2014). A diffuse bony Ewing’s Sarcoma. La Tunisie Médicale, 92(6), 1–2.

Mam, S. (1973). Le sarcome d’Ewing [PhD Thesis, Université d’Antanarivo].

Masson, E. (2015). Évaluation d’interventions destinées à faciliter le retour en classe d’élèves du secondaire traités pour un cancer [Internet]. EM-Consulte. https://www.em-consulte.com/article/962368/figures/evaluation-d-interventions-destineesafaciliter-l

Pombet, T. (2021). Soutenir l’autonomisation des adolescentes et des jeunes adultes atteintes de cancer : savoirs « psy » et travail de normalisation. Anthropologie & Santé Revue internationale francophone d’anthropologie de la santé, 23 [Internet]. https://journals.openedition.org/anthropologiesante/10015

Rollin, Z. (2019). Devenir une élève atteinte d’un cancer : Quelles expériences de la scolarité pour des adolescentes suivies pour un cancer? Agora débats/jeunesses, 81, 79–92.

Sbaraglia, M., Bellan, E., & Dei Tos, A.P. (2021). The 2020 WHO classification of soft tissue tumours: News and perspectives. Pathologica, 113(2), 70–84.

Shosha, G. M. A. (2016). Keep on striving: The impact of psychosocial support on Jordanian adolescents with cancer. Health, 8(10), 921–930.

Williamson, H., & Rumsey, N. (2016). Perspectives of health professionals on the psychosocial impact of an altered appearance among adolescents treated for cancer and how to improve appearance-related care. Journal of Psychosocial Oncology, 35(1), 47–60. https://doi.org/10.1080/07347332.2016.1247407

Zeltzer, L. K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J. C. I., Lu, Q., & Krull, K. (2009). Psychological status in childhood cancer survivors: A report from the Childhood Cancer Survivor Study. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 27(14), 2396–2404. https://doi.org/10.1200/JCO.2008.21.1433

Zucker, J. M., Quintana, E., Pacquement, H., Doz, F., Orbach, D., & Michon, J. (2003). Comment continuer à soigner un adolescent que l’on a renoncé à guérir. InfoKara, 18(2), 56–58. https://doi.org/10.2917/inka.032.0056


Refbacks

  • There are currently no refbacks.


Bookmark and Share