Résumés
Résumé
Les familles ayant un enfant atteint de cancer peuvent vivre une détresse psychosociale importante. Cette étude analyse des facteurs de risques et de protections chez ces familles. Soixante-six parents furent recrutés pour répondre par écrit à quatre questions. Une analyse thématique tabulaire structurée fut réalisée. Les résultats montrent que les principaux risques sont liés à la maladie de l’enfant, la gestion quotidienne et le bien-être parental, tandis que le soutien, les relations familiales, les comportements adaptatifs et la santé de l’enfant sont des facteurs protecteurs cruciaux. Cette étude fournit de précieuses informations pour améliorer le soutien des familles au Québec.
Mots-clés :
- cancer pédiatrique,
- famille,
- facteur protecteur,
- facteur de risque,
- analyse thématique
Abstract
Families with a child diagnosed with cancer can experience significant psychosocial distress. This study analyzes risk and protective factors within these families. Sixty-six parents were recruited to answer in writing four questions. A structured tabular thematic analysis was conducted. The results show that the main risks are related to the child’s illness, day-to-day management, and parental well-being, while support, family relationships, adaptive behaviors, and the child’s health are crucial protective factors. This study provides valuable insights for improving family support in Quebec.
Keywords:
- childhood cancer,
- family,
- protective factor,
- risk factor,
- thematic analysis
Parties annexes
Bibliographie
- Adler, N. E., & Page, A. E. K. (2008). The psychosocial needs of cancer patients. Dans N. E. Adler & A. E. K. Page (Dirs.), Cancer care for the whole patient: Meeting psychosocial health needs. National Academies Press. https://www.ncbi.nlm.nih.gov/books/NBK4011/
- Akdeniz Kudubes, A., Bektas, M., Ayar, D., & Bektas, İ. (2024). The predictive power of disease management of parents with children with cancer on fatigue and sleepiness levels. Current Psychology: A Journal for Diverse Perspectives on Diverse Psychological Issues, 43(10), 9290–9299. https://doi.org/10.1007/s12144-023-05093-z
- Barrera, M., Granek, L., Shaheed, J., Nicholas, D., Beaune, L., D'Agostino, N. M., Bouffet, E., & Antle, B. (2013). The tenacity and tenuousness of hope: Parental experiences of hope when their child has a poor cancer prognosis. Cancer Nursing, 36(5), 408–416. https://doi.org/10.1097/NCC.0b013e318291ba7d
- Belpame, N., Kars, M. C., Deslypere, E., Rober, P., Van Hecke, A., & Verhaeghe, S. (2021). Coping strategies of adolescent and young adult survivors of childhood cancer: A qualitative study. Cancer Nursing, 44(6), E395–E403. https://doi.org/10.1097/NCC.0000000000000865
- Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Sage.
- Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
- Célis-Gennart, M., & Vannotti, M. (2000). L'expérience intersubjective de la maladie chronique : ces maladies qui tiennent une famille en haleine... Institut universitaire de médecine sociale et préventive. https://api.unil.ch/iris/server/api/core/bitstreams/88b781f5-886e-4d77-a5cf-b4ce45536faa/content
- Chen, Y., & Tombe, T. (2023). The rise (and fall?) of inflation in Canada: A detailed analysis of its post-pandemic experience. Canadian Public Policy, 49(2), 197–217. https://doi.org/10.3138/cpp.2022-068
- Clarke, S. A., Davies, H., Jenney, M., Glaser, A., & Eiser, C. (2005). Parental communication and children's behaviour following diagnosis of childhood leukaemia. Psycho-oncology, 14(4), 274–281. https://doi.org/10.1002/pon.843
- Compas, B. E., Desjardins, L., Vannatta, K., Young-Saleme, T., Rodriguez, E. M., Dunn, M., Bemis, H., Snyder, S., & Gerhardt, C. A. (2014). Children and adolescents coping with cancer: Self- and parent reports of coping and anxiety/depression. Health Psychology, 33(8), 853–861. https://doi.org/10.1037/hea0000083
- Compas, B. E., Bemis, H., Gerhardt, C. A., Dunn, M. J., Rodriguez, E. M., Desjardins, L., Preacher, K. J., Manring, S., & Vannatta, K. (2015). Mothers and fathers coping with their children's cancer: Individual and interpersonal processes. Health Psychology, 34(8), 783–793. https://doi.org/10.1037/hea0000202
- Cowfer, B. A., Dietrich, M. S., & Akard, T. F. (2021). Effect of time on quality of parent-child communication in pediatric cancer. Pediatric Blood & Cancer, 68(10), Article e29091. https://doi.org/10.1002/pbc.29091
- da Silva, F. M., Jacob, E., & Nascimento, L. C. (2010). Impact of childhood cancer on parents' relationships: An integrative review. Journal of Nursing Scholarship: An Official Publication of Sigma Theta Tau International Honor Society of Nursing, 42(3), 250–261. https://doi.org/10.1111/j.1547-5069.2010.01360.x
- Gerhardt, C. A., Salley, C. G., & Lehmann, V. (2016). The impact of pediatric cancer on the family. Dans A. N. Abrams, A. C. Muriel & L. Wiener (Dirs.), Pediatric psychosocial oncology: Textbook for multidisciplinary care (p. 143–155). Springer International Publishing. https://doi.org/10.1007/978-3-319-21374-3_9
- Hovén, E., Grönqvist, H., Pöder, U., von Essen, L., & Lindahl Norberg, A. (2017). Impact of a child's cancer disease on parents' everyday life: A longitudinal study from Sweden. Acta Oncologica, 56(1), 93–100. https://doi.org/10.1080/0284186X.2016.1250945
- Jones, B. L. (2007). Caregivers of children with cancer. Journal of Human Behavior in the Social Environment, 14(1–2), 221–239. https://doi.org/10.1300/J137v14n01_11
- 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
- Kazak, A. E. (2006). Pediatric psychosocial preventative health model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine. Families, Systems, & Health, 24(4), 381–395. https://psycnet.apa.org/doi/10.1037/1091-7527.24.4.381
- Kazak, A. E., Abrams, A. N., Banks, J., Christofferson, J., DiDonato, S., Grootenhuis, M. A., Kabour, M., Madan-Swain, A., Patel, S. K., Zadeh, S., & Kupst, M. J. (2015). Psychosocial assessment as a standard of care in pediatric cancer. Pediatric Blood & Cancer, 62(S5), S426–S459. https://doi.org/10.1002/pbc.25730
- Kazak, A. E., Hwang, W. T., Chen, F. F., Askins, M. A., Carlson, O., Argueta-Ortiz, F., & Barakat, L. P. (2018). Screening for family psychosocial risk in pediatric cancer: Validation of the Psychosocial Assessment Tool (PAT) version 3. Journal of Pediatric Psychology, 43(7), 737–748. https://doi.org/10.1093/jpepsy/jsy012
- Kazak, A. E., Scialla, M., Deatrick, J. A., & Barakat, L. P. (2024). Pediatric psychosocial preventative health model: Achieving equitable psychosocial care for children and families. Families, Systems, & Health, 42(1), 76–89. https://doi.org/10.1037/fsh0000856
- Khetan, A. K., Yusuf, S., Lopez-Jaramillo, P., Szuba, A., Orlandini, A., Mat-Nasir, N., Oguz, A., Gupta, R., Avezum, Á., Rosnah, I., Poirier, P., Teo, K. K., Wielgosz, A., Lear, S. A., Palileo-Villanueva, L. M., Serón, P., Chifamba, J., Rangarajan, S., Mushtaha, M., Mohan, D., … Leong, D. P. (2022). Variations in the financial impact of the COVID-19 pandemic across 5 continents: A cross-sectional, individual level analysis. EClinicalMedicine, 44, Article 101284. https://doi.org/10.1016/j.eclinm.2022.101284
- Khoury, S. M., & Egozi, S. (2024). Anxiety and decision-making among parents coping with childhood cancer during the first year of treatment. Journal of Child and Family Studies, 33(3), 898–907. https://doi.org/10.1007/s10826-023-02686-x
- Lau, S., Lu, X., Balsamo, L., Devidas, M., Winick, N., Hunger, S. P., Carroll, W., Stork, L., Maloney, K., & Kadan-Lottick, N. (2014). Family life events in the first year of acute lymphoblastic leukemia therapy: A children's oncology group report. Pediatric Blood & Cancer, 61(12), 2277–2284. https://doi.org/10.1002/pbc.25195
- Lemieux, T., Milligan, K., Schirle, T., & Skuterud, M. (2020). Initial impacts of the COVID-19 pandemic on the Canadian labour market. Canadian Public Policy, 46(S1), S55-S65. https://doi.org/10.3138/cpp.2020-049
- Leucan. (2023, mai). Leucan est là en tout temps : rapport annuel 2023-2024. https://www.leucan.qc.ca/wp-content/uploads/2024/07/Rapport_annuel_2023-24.pdf
- Lewandowska, A. (2021). Influence of a child's cancer on the functioning of their family. Children, 8(7), Article 592. https://doi.org/10.3390/children8070592
- Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14(1), 57–88. https://doi.org/10.1007/s10567-010-0082-z
- 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), Article 1757. https://doi.org/10.3390/ijerph20031757
- Nizamis, K., Kalliakmanis, V., Koutsoupias, N., Polychronopoulou, S., Baka, M., Papakonstantinou, E., & Hatzipantelis, E. (2024). The inter-familiar issues of Greek parents facing childhood cancer. European Journal of Pediatrics, 183(1), 229–234. https://doi.org/10.1007/s00431-023-05266-9
- Ogez, D., Péloquin, K., Bertout, L., Bourque, C. J., Curnier, D., Drouin, S., Laverdière, C., Marcil, V., Aramideh, J., Ribeiro, R., Rondeau, É., Sinnett, D., & Sultan, S. (2021). “Taking back control together”: Definition of a new intervention designed to support parents confronted with childhood cancer. Cogent Medicine, 8(1), Article 1944476. https://doi.org/10.1080/2331205X.2021.1944476
- Pahl, D. A., Wieder, M. S., & Steinberg, D. M. (2021). Social isolation and connection in adolescents with cancer and survivors of childhood cancer: A systematic review. Journal of Adolescence, 87(1), 15–27. https://doi.org/10.1016/j.adolescence.2020.12.010
- Perez, M. N., Traino, K. A., Bakula, D. M., Sharkey, C. M., Espeleta, H. C., Delozier, A. M., Mayes, S., McNall, R., Chaney, J. M., & Mullins, L. L. (2020). Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress. Psycho-Oncology, 29(2), 304–310. https://doi.org/10.1002/pon.5248
- Raffle, A. E., Mackie, A., & Gray, J. A. M. (2019). Screening: Evidence and practice. Oxford University Press.
- Rajajee, S., Ezhilarasi, S., & Indumathi, D. (2007). Psychosocial problems in families of children with cancer. Indian Journal of Pediatrics, 74(9), 837–839. https://doi.org/10.1007/s12098-007-0149-0
- Registre québécois du cancer. (2025, septembre). Incidence du cancer. Gouvernement du Québec. https://app.powerbi.com/view?r=eyJrIjoiNjc2ZTAxNmMtMWFiMi00NDIwLTg0MzYtOTY2OTIzMDliYjA2IiwidCI6IjA2ZTFmZTI4LTVmOGItNDA3NS1iZjZjLWFlMjRiZTFhNzk5MiJ9
- Rivest, J., Robitaille, M.-A., & Joannette, S. (2017). La détresse des personnes atteintes de cancer : un incontournable dans les soins. Ministère de la Santé et des Services sociaux. https://publications.msss.gouv.qc.ca/msss/fichiers/2017/17-902-11W.pdf
- Robinson, O. C. (2022). Conducting thematic analysis on brief texts: The structured tabular approach. Qualitative Psychology, 9(2), 194–208. https://doi.org/10.1037/qup0000189
- Rodriguez, E. M., Dunn, M. J., Zuckerman, T., Vannatta, K., Gerhardt, C. A., & Compas, B. E. (2012). Cancer-related sources of stress for children with cancer and their parents. Journal of Pediatric Psychology, 37(2), 185–197. https://doi.org/10.1093/jpepsy/jsr054
- Van Schoors, M., Caes, L., Verhofstadt, L. L., Goubert, L., & Alderfer, M. A. (2015). Systematic review: Family resilience after pediatric cancer diagnosis. Journal of Pediatric Psychology, 40(9), 856–868. https://doi.org/10.1093/jpepsy/jsv055
- Van Schoors, M., De Mol, J., Morren, H., Verhofstadt, L. L., Goubert, L., & Van Parys, H. (2018). Parents' perspectives of changes within the family functioning after a pediatric cancer diagnosis: A multi family member interview analysis. Qualitative Health Research, 28(8), 1229–1241. https://doi.org/10.1177/1049732317753587
- 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), Article e27677. https://doi.org/10.1002/pbc.27677
- Voll, M., Fairclough, D. L., Morrato, E. H., McNeal, D. M., Embry, L., Pelletier, W., Noll, R. B., & Sahler, O. J. Z. (2022). Dissemination of an evidence-based behavioral intervention to alleviate distress in caregivers of children recently diagnosed with cancer: Bright IDEAS. Pediatric Blood & Cancer, 69(10), Article e29904. https://doi.org/10.1002/pbc.29904
