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Revue narrative du vécu de parents dont un enfant a reçu un diagnostic de cancer
Abstract
Objectifs : Explorer les recherches récentes sur le vécu des parents d’un enfant ayant reçu un diagnostic de cancer, en vue de dresser un portrait global et complet de l’expérience parentale, couvrant toutes les catégories démographiques de parents et tous les types de cancer, lequel pourra ensuite être utilisé pour améliorer les pratiques cliniques.
Méthodes : Une revue narrative de littérature a été réalisée en novembre 2023 à l’aide de PubMed et de l’outil de recherche universitaire OMNI de l’université Brock. Les recherches ont été effectuées à l’aide de mots clés prédéfinis et se sont limitées aux publications des dix dernières années. Les revues systématiques et les articles de synthèse ont été inclus, mais les essais cliniques et les essais contrôlés randomisés ont été exclus afin de respecter une approche narrative et qualitative. Tous les résumés d’articles (n = 1 973) ont été examinés manuellement afin de vérifier s’ils répondaient aux critères d’inclusion. Onze études qualitatives (n = 1 962 exclusions) ont été retenues et incluses dans la revue finale.
Résultats : Au total, 11 articles décrivant des cas de 8 pays ont été inclus dans cette revue narrative. À l’issue d’une analyse conceptuelle et thématique, quatre thèmes majeurs sont apparus : l’isolement, la COVID-19 en tant que facteur de rapprochement, l’importance de vivre « l’instant présent » et le point de non-retour. Ces thèmes couvrent les principaux aspects du vécu des parents tout au long du parcours de leur enfant face au cancer et font ressortir leurs difficultés émotionnelles, relationnelles et existentielles, mais aussi des stratégies communes d’adaptation.
Conclusion : Ensemble, les idées de ces quatre thèmes constituent une base commune de connaissance du vécu des parents qui permettra d’améliorer l’aide qui leur est proposée. L’intégration de ce savoir dans la pratique oncologique, notamment par le biais de formations à l’intention des infirmières et des équipes interdisciplinaires, pourrait renforcer leur capacité d’empathie et favoriser des soins aux familles davantage centrés sur la personne. Dans l’ensemble, ce savoir thématique pourrait contribuer à l’amélioration des soins oncologiques et des soutiens offerts aux familles ainsi qu’à une plus grande humanisation du vécu des parents aidants.
Mots-clés : vécu, cancer, oncologie, parents, cancer pédiatrique, recherche narrative, revue
https://doi.org/10.5737/23688076364436
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Abdalla, T., Preen, D. B., Pole, J. D., Walwyn, T., Bulsara, M., Ives, A., Choong, C. S., & Ohan, J. L. (2024). Psychiatric disorders in childhood cancer survivors: a retrospective matched cohort study of inpatient hospitalisations and community-based mental health services utilisation in Western Australia. Australian & New Zealand Journal of Psychiatry, 58(6), 515–527. https://doi.org/10.1177/00048674241233871
Al Omari, O., Roach, E. J., Shakman, L., Al Hashmi, A., Sunderraj, S. J., Francis, F., & Joseph, M. A. (2020). The lived experiences of mothers who are parenting children with leukemia. Cancer Nursing, 44(6), E374–E381. https://doi.org/10.1097/ncc.0000000000000898
Blom Andersson, C., Karlsson, A., & Bergsten, U. (2021). Togetherness in loneliness: Experiences of a group activity for families with a child suffering from cancer as described from the parent’s perspective. Scandinavian Journal of Caring Sciences, 36(2), 439–445. https://doi.org/10.1111/scs.13057
Borrescio-Higa, F., & Valdés, N. (2022). The psychosocial burden of families with childhood blood cancer. International Journal of Environmental Research and Public Health, 19(1), 599. https://doi.org/10.3390/ijerph19010599
Canadian Cancer Society. (2022). Canadian cancer statistics special report: Prevalence and projections in Canada to 2040. https://cdn.cancer.ca/-/media/files/research/cancer-statistics/2022-statistics/2022-special-report/2022_prevalence_report_final_en.pdf
Canadian Cancer Society (2024). Childhood leukemia statistics. https://cancer.ca/en/cancer-information/cancer-types/leukemia-childhood/statistics
Carlsson, T., Kukkola, L., Ljungman, L., Hovén, E., & von Essen, L. (2019). Psychological distress in parents of children treated for cancer: An explorative study. PLOS One, 14(6), e0218860. https://doi.org/10.1371/journal.pone.0218860
Collaço, N., Gamble, A., Morgan, J. E., Phillips, B., Culliford, D., & Darlington, A.-S. (2022). Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: A longitudinal study. Archives of Disease in Childhood, 108(3), 198–203. https://doi.org/10.1136/archdischild-2022-324905
College of Nurses of Ontario (n.d.). Therapeutic Nurse-Client Relationship Revised 2006. https://www.cno.org/globalassets/docs/prac/41033_therapeutic.pdf
Colori, S. (2021). Dynamics of sharing lived experience. Schizophrenia Bulletin, 48(4), 726–727. https://doi.org/10.1093/schbul/sbab076
Darlington, A.-S., Morgan, J. E., Wagland, R., Sodergren, S., Culliford, D., Gamble, A., & Phillips, B. (2020). Covid-19 and children with cancer: Parents’ experiences, anxieties, and support needs. https://doi.org/10.1101/2020.06.11.20128603
Davidson, C. A., Kennedy, K., & Jackson, K. T. (2023). Trauma-informed approaches in the context of cancer care in Canada and the United States: A scoping review. Trauma, Violence, & Abuse, 24(5), 2983–2996. https://doi.org/10.1177/15248380221120836
Davies, J., O’Connor, M., Halkett, G. K., Kelada, L., & Gottardo, N. G. (2022). Parents’ experiences of childhood cancer during the COVID-19 pandemic: An Australian perspective. Journal of Pediatric Psychology, 47(2), 148–157. https://doi.org/10.1093/jpepsy/jsab125
Frederiksen, L. E., Erdmann, F., Mader, L., Mogensen, H., Pedersen, C., Kenborg, L., Bautz, A., Talbäck, M., Hirvonen, E., Nielsen, T. T., Andersen, E. A. W., Holmqvist, A. S., Jørgensen, O. S., Jepsen, J. R. M., Malila, N., Hasle, H., Madanat-Harjuoja, L., Feychting, M., & Winther, J. F. (2022). Psychiatric disorders in childhood cancer survivors in Denmark, Finland, and Sweden: A register-based cohort study from the SALiCCS research programme. The Lancet Psychiatry, 9(1), 35–45. https://doi.org/10.1016/S2215-0366(21)00387-4
Force, L. M., Abdollahpour, I., Advani, S. M., Agius, D., Ahmadian, E., Alahdab, F., Alam, T., Alebel, A., Alipour, V., Allen, C. A., Almasi-Hashiani, A., Alvarez, E. M., Amini, S., Amoako, Y. A., Anber, N. H., Arabloo, J., Artaman, A., Atique, S., Awasti, A., …. Bhakta, N. (2019). The global burden of childhood and adolescent cancer in 2017: An analysis of the Global Burden of Disease Study 2017. The Lancet Oncology, 20(9), 1211–1225.
Gabriel, M., Wakefield, C., Vetsch, J., Karpelowsky, J., Darlington, A., Cohn, R., Signorelli, C. (2019). Paediatric surgery for childhood cancer: Lasting experiences and needs of children and parents. European Journal of Cancer Care, 28(1), 116–131. https://doi.org/10.1111/ecc.13116
Goldstein, E., Chokshi, B., Melendez-Torres, G., Rios, A., Jelley, M., & Lewis-O’Connor, A. (2024). Effectiveness of trauma-informed care implementation in health care settings: Systematic review of reviews and realist synthesis. The Permanente Journal, 28(1), 135–150. https://doi.org/10.7812/tpp/23.127
Government of Canada. (2025). Health Infobase: Cancer in young people in Canada data tool. https://health-infobase.canada.ca/data-tools/cypc/
Hardin, A. P., Hackell, J. M., Committee on Practice and Ambulatory Medicine: Simon, G. R., Boudreau, A. D. A., Baker, C. N., Barden, A., 3rd, Meade K. E., Moore, S. B., & Richerson, J. (2017). Age limit of pediatrics. Pediatrics, 140(3), e20172151. https://doi.org/10.1542/peds.2017-2151
Katz, L. F., Fladeboe, K., King, K., Gurtovenko, K., Kawamura, J., Friedman, D., Compas, B., Gruhn, M., Breiger, D., Lengua, L., Lavi, I., & Stettler, N. (2018). Trajectories of child and caregiver psychological adjustment in families of children with cancer. Health Psychology, 37(8), 725–735. https://doi.org/10.1037/hea0000619
Lancaster, K., Bhopti, A., Kern, M. L., Taylor, R., Janson, A., & Harding, K. (2023). Effectiveness of peer support programmes for improving well-being and quality of life in parents/carers of children with disability or chronic illness: A systematic review. Child: Care, Health and Development, 49(3), 485-496. https://doi.org/10.1111/cch.13063
Lewandowska, A. (2021). Influence of a child’s cancer on the functioning of their family. Children, 8(7), 592. https://doi.org/10.3390/children8070592
Lowes, L., Gregory, J. W., & Lyne, P. (2005). Newly diagnosed childhood diabetes: A psychosocial transition for parents? Journal of Advanced Nursing, 50(3), 253–261. https://doi.org/10.1111/j.1365-2648.2005.03388.x
Mcharo, S. K., Spurr, S., Bally, J., Peacock, S., Holtslander, L., & Walker, K. (2023). Application of nursing presence to family-centered care: Supporting nursing practice in pediatric oncology. Journal for Specialists in Pediatric Nursing: JSPN, 28(1), e12402. https://doi.org/10.1111/jspn.12402
Mack, J. W., & Kang, T. I. (2020). Care experiences that foster trust between parents and physicians of children with cancer. Pediatric Blood & Cancer, 67(11). https://doi.org/10.1002/pbc.28399
Mays, N., Pope, C., & Popay, J. (2005). Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. Journal of Health Services Research & Policy, 10(1 suppl), 6–20. https://doi.org/10.1258/1355819054308576
Melguizo-Garín, A., Benítez-Márquez, M. D., Hombrados-Mendieta, I., & Martos-Méndez, M. J. (2023). Importance of social support of parents of children with cancer: A multicomponent model using partial least squares-path modelling. International Journal of Environmental Research and Public Health, 20(3), 1757. https://doi.org/10.3390/ijerph20031757
McEvoy, B., & Creaner, M. (2021). The experiences of mothers who have a child diagnosed with cancer. Psychology & Health, 1–18. https://doi.org/10.1080/08870446.2021.1872791
Moudatsou, M., Stavropoulou, A., Philalithis, A., & Koukouli, S. (2020). The role of empathy in health and Social Care Professionals. Healthcare, 8(1), 26. https://doi.org/10.3390/healthcare8010026
Nathan, P. C., Nachman, A., Sutradhar, R., Kurdyak, P., Pole, J. D., Lau, C., & Gupta, S. (2018). Adverse mental health outcomes in a population-based cohort of survivors of childhood cancer. Cancer, 124(9), 2045–2057. https://doi.org/10.1002/cncr.31279
Negraia, D. V., & Augustine, J. M. (2020). Unpacking the parenting well-being gap: The role of dynamic features of daily life across broader social contexts. Social Psychology Quarterly, 83(3), 207–228. https://doi.org/10.1177/0190272520902453
Nikfarid, L., Rassouli, M., Farahani, A. S., Beykmirza, R., & Khoshnazar, T. A. (2020). Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: A qualitative analysis. Eastern Mediterranean Health Journal = La revue de sante de la Mediterranee orientale = al-Majallah al-sihhiyah li-sharq al-mutawassit, 26(6), 680–686. https://doi.org/10.26719/emhj.19.055
Page, M. J., McKenzie, J., Bossuyt, P., Boutron, I., Hoffmann, T., mulrow, c., Shamseer, L., Tetzlaff, J., Akl, E., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The Prisma 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372, n71. https://doi.org/10.31222/osf.io/v7gm2
Pino Gavidia, L. A., & Adu, J. (2022). Critical narrative inquiry: An examination of a methodological approach. International Journal of Qualitative Methods, 21, 160940692210815. https://doi.org/10.1177/16094069221081594
Public Health Agency of Canada. (2017). Cancer in young people in Canada: A report from the Enhanced Childhood Cancer Surveillance System [Internet]. www.canada.ca/en/health-canada/services/publications/science-research-data/cancer-young-people-canada-surveillance-2017.html
Simkhaev, A. (2025). Trauma informed care and early distress identification in oncology settings. Journal of Psychosocial Oncology, 43(2), 294-317. https://doi.org/10.1080/07347332.2024.2433976
Smith, J., Cheater, F., & Bekker, H. (2015). Parents’ experiences of living with a child with a long-term condition: A rapid structured review of the literature. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 18(4), 452–474. https://doi.org/10.1111/hex.12040
Stokes, Y., Jacob, J. D., Gifford, W., Squires, J., & Vandyk, A. (2017). Exploring nurses’ knowledge and experiences related to trauma-informed care. Global Qualitative Nursing Research, 4, 1–10. https://doi.org/10.1177/2333393617734510
Tan, A. J., Tiew, L. H., & Shorey, S. (2020). Experiences and needs of parents of palliative paediatric oncology patients: A meta-synthesis. European Journal of Cancer Care, 30(3), 13388. https://doi.org/10.1111/ecc.13388
van Warmerdam, J., Zabih, V., Kurdyak, P., Sutradhar, R., Nathan, P. C., & Gupta, S. (2019). Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta-analysis. Pediatric Blood & Cancer, 66(6), e27677. https://doi.org/10.1002/pbc.27677
Verberne, L. M., Kars, M. C., Schouten-van Meeteren, A. Y., van den Bergh, E. M., Bosman, D. K., Colenbrander, D. A., Grootenhuis, M. A., & van Delden, J. J. (2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study. European Journal of Pediatrics, 178(7), 1075–1085. https://doi.org/10.1007/s00431-019-03393-w
Vieira, A. C., & Cunha, M. L. (2020). My role and responsibility: Mothers’ perspectives on overload in caring for children with cancer. Current Oncology Reports, 22(4), 54. https://doi.org/10.1590/s1980-220x2018034603540
Wang, S., Wu, L., Yang, Y., & Sheen, J. (2019). The experience of parents living with a child with cancer at the end of life. European Journal of Cancer Care, 28(4), e13061. https://doi.org/10.1111/ecc.13061
Wei, H., Roscigno, C. I., Swanson, K. M., Black, B. P., Hudson-Barr, D., & Hanson, C. C. (2016). Parents’ experiences of having a child undergoing congenital heart surgery: An emotional rollercoaster from shocking to blessing. Heart & Lung, 45(2), 154–160. https://doi.org/10.1016/j.hrtlng.2015.12.007
Woolf, C., Muscara, F., Anderson, V. A., & McCarthy, M. C. (2016). Early traumatic stress responses in parents following a serious illness in their child: A systematic review. Journal of Clinical Psychology in Medical Settings, 23(1), 53–66. https://doi.org/10.1007/s10880-015-9430-y
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