{"id":19519,"date":"2025-12-18T13:39:09","date_gmt":"2025-12-18T18:39:09","guid":{"rendered":"https:\/\/observatoireprocheaidance.ca\/?page_id=19519"},"modified":"2026-07-17T15:24:19","modified_gmt":"2026-07-17T19:24:19","slug":"trajectory-of-cancer-caregivers","status":"publish","type":"page","link":"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-cancer-caregivers\/","title":{"rendered":"Trajectory of Cancer Caregivers"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_0 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h1 style=\"text-align: center; opacity:0\">Trajectory of Cancer Caregivers<\/h1>\n<\/div><\/div>\n\n<div class=\"et_pb_code_0 et_pb_code et_pb_module preset--group--divi-code--divi-transition--default\"><div class=\"et_pb_code_inner\">\n\t\t\t\t<p class=\"rs-p-wp-fix\"><\/p>\n\t\t\t\t<sr7-module data-alias=\"oncologie-ppa-en\" data-id=\"11\" id=\"SR7_11_1\" class=\"rs-ov-hidden\" data-version=\"6.7.57\">\n\t\t\t\t\t<sr7-adjuster><\/sr7-adjuster>\n\t\t\t\t\t<sr7-content>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_11_1-21\" data-key=\"21\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_11_1-22\" data-key=\"22\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t<\/sr7-content>\n\t\t\t\t\t<image_lists style=\"display:none\">\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/PPA-oncologie-en-fond-1.png\" data-libid=\"19542\" data-lib=\"medialibrary\" alt=\"Trajectory of 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data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/PPA-oncologie-en-m-Socioeconomic-situation.png\" data-libid=\"19576\" data-lib=\"medialibrary\" alt=\"Socioeconomic situation\" title=\"PPA-oncologie-en-m-Socioeconomic-situation\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI1LzEyL1BQQS1vbmNvbG9naWUtZW4tbS1Tb2Npb2Vjb25vbWljLXNpdHVhdGlvbi5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/PPA-oncologie-en-m-Cancer-type.png\" data-libid=\"19580\" data-lib=\"medialibrary\" alt=\"Cancer type, stage, form and intensity of support\" title=\"PPA-oncologie-en-m-Cancer-type\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI1LzEyL1BQQS1vbmNvbG9naWUtZW4tbS1DYW5jZXItdHlwZS5wbmc=\"\/>\n\t\t\t\t\t\t<img 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style=\"text-align: center;\"><em>Last updated: December 2025<\/em><\/p>\n<p style=\"text-align: center;\">In collaboration with :<\/p>\n<\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_column_8 et_pb_column et_pb_column_1_3 et-last-child et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div>\n<\/div>\n\n<div class=\"et_pb_row_4 et_pb_row et_pb_row_5col et_block_row et_block_row_5col preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_9 et_pb_column et_pb_column_1_5 et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div>\n\n<div class=\"et_pb_column_10 et_pb_column et_pb_column_1_5 et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_image_0 et_pb_image et_pb_module et_block_module preset--group--divi-image--divi-transition--default\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/04\/Design-sans-titre-1.png\" width=\"1473\" height=\"477\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/04\/Design-sans-titre-1.png 1473w\" sizes=\"(max-width: 1473px) 100vw, 1473px\" class=\"wp-image-22811\" title=\"Design sans titre\" alt=\"McGill - Ingram School of Nursing - \u00c9cole des sciences infirmi\u00e8res Ingram\" \/><\/span><\/div>\n<\/div>\n\n<div class=\"et_pb_column_11 et_pb_column et_pb_column_1_5 et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module preset--group--divi-image--divi-transition--default\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/SMRC_Horizontal-logo_2023-2000px.png\" width=\"2000\" height=\"353\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/SMRC_Horizontal-logo_2023-2000px.png 2000w\" sizes=\"(max-width: 2000px) 100vw, 2000px\" class=\"wp-image-19606\" title=\"SMRC_Horizontal-logo_2023-2000px\" alt=\"Centre de recherche de St. Mary \/ St. Mary&#039;s Research Center\" \/><\/span><\/div>\n<\/div>\n\n<div class=\"et_pb_column_12 et_pb_column et_pb_column_1_5 et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_image_2 et_pb_image et_pb_module et_block_module preset--group--divi-image--divi-transition--default\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/04\/logo_ProcheONKO_RGBbloc-centre.png\" width=\"1366\" height=\"2311\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2026\/04\/logo_ProcheONKO_RGBbloc-centre.png 1366w\" sizes=\"(max-width: 1366px) 100vw, 1366px\" class=\"wp-image-22816\" title=\"logo_ProcheONKO_RGB+bloc centr\u00e9\" alt=\"Proche ONKO Soutien aux proches aidants en oncologie\" \/><\/span><\/div>\n<\/div>\n\n<div class=\"et_pb_column_13 et_pb_column et_pb_column_1_5 et-last-child et_block_column et_pb_column_empty et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><\/div>\n<\/div>\n\n<div class=\"et_pb_row_5 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_14 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_4 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module et_pb_text_align_center preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\">AUTHORS: Victoria Caucci, Sanjna Puri, Chantal Tardif, Sylvie Lambert, Florence Potvin<br \/>TRANSLATION: <span data-teams=\"true\">Lesley McCubbin<\/span><br \/>GRAPHIC DESIGN: Julie Bri\u00e8re<br \/>WEBSITE ANIMATION : <a href=\"https:\/\/www.zaa.cc\" target=\"_blank\" rel=\"noopener\">[ ZAA.CC ] Design web<\/a><\/p>\n<p style=\"text-align: center;\"><span style=\"font-size: 16px; text-align: left;\">To cite this document: Observatoire qu\u00e9b\u00e9cois de la proche aidance (2025). <em>Trajectory of Cancer Caregivers.<\/em> CIUSSS du Centre-Ouest-de-l&#8217;\u00cele-de-Montr\u00e9al. <\/span><\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_row_6 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_15 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_toggle_0 et_pb_toggle et_pb_toggle_item et_pb_toggle_close et_pb_module et_block_module list_spacing preset--group--divi-toggle--divi-transition--default\"><h2 class=\"et_pb_toggle_title\">References<\/h2><div class=\"et_pb_toggle_content clearfix\"><ol>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Koczwara, B. 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Assessing the comprehensive training needs of informal caregivers of cancer patients: A qualitative study. <\/span><i><span data-contrast=\"auto\">Current\u00a0Oncology, 30<\/span><\/i><span data-contrast=\"auto\">(4),<\/span><span data-contrast=\"auto\">\u00a03845\u20133858.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.3390\/curroncol30040291\"><span data-contrast=\"none\">https:\/\/doi.org\/10.3390\/curroncol30040291<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\"><\/span><span data-contrast=\"auto\">Langeg\u00e5rd, U., Cajander, \u00c5., Carlsson, M., von Essen, L., Ahmad, A., Laurell, G., Tiblom Ehrsson, Y. et Johansson, B (2022). Internet-based support for informal caregivers to individuals with head and neck cancer (Carer eSupport): A study protocol for the development and feasibility testing of a complex online intervention. <\/span><i><span data-contrast=\"auto\">BMJ Open, 12<\/span><\/i><span data-contrast=\"auto\">(5)<\/span><span data-contrast=\"auto\">,\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1136\/bmjopen-2021-057442\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1136\/bmjopen-2021-057442<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Hoeck, B.,Ledderer, L.\u00a0et\u00a0Hansen, H. P. (2015).\u00a0Involvement\u00a0of patients\u00a0with\u00a0lung\u00a0and\u00a0gynecological\u00a0cancer and\u00a0their\u00a0relatives in psychosocial cancer\u00a0rehabilitation: A narrative\u00a0review.\u00a0<\/span><i><span data-contrast=\"auto\">The Patient, 8<\/span><\/i><span data-contrast=\"auto\">(2)<\/span><span data-contrast=\"auto\">, 127\u2013143.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s40271-014-0076-x\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s40271-014-0076-x<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Lambert, S.,Loban, K., Gignac, A. S., Magalhaes, M., Brahim, L. O., Chehayeb, S. et Wasserman, S. (2024). From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care. <\/span><i><span data-contrast=\"auto\">Palliative &amp;\u00a0Supportive\u00a0Care<\/span><\/i><span data-contrast=\"auto\">,\u00a0<\/span><i><span data-contrast=\"auto\">22<\/span><\/i><span data-contrast=\"auto\">(5).\u00a01056\u20131064.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1017\/S147895152400035X\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1017\/S147895152400035X<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Lambert, S. D., Girgis, A.,Lecathelinais, C.\u00a0et\u00a0Stacey, F. (2013). Walking a mile in\u00a0their\u00a0shoes:\u00a0Anxiety\u00a0and\u00a0depression\u00a0among\u00a0partners\u00a0and\u00a0caregivers\u00a0of cancer\u00a0survivors\u00a0at\u00a06 and 12\u00a0months\u00a0post-diagnosis.\u00a0<\/span><i><span data-contrast=\"auto\">Supportive\u00a0Care in Cancer, 21<\/span><\/i><span data-contrast=\"auto\">(1)<\/span><span data-contrast=\"auto\">, 75\u201385.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s00520-012-1495-7\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s00520-012-1495-7<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Zhu, Y., Pei, X., Chen, X.et\u00a0Li, T. (2023). Family\u00a0caregivers\u2019\u00a0experiences\u00a0of\u00a0caring\u00a0for\u00a0advanced\u00a0cancer\u00a0patients:\u00a0A qualitative\u00a0systematic\u00a0review\u00a0and\u00a0meta-synthesis.\u00a0<\/span><i><span data-contrast=\"auto\">Cancer Nursing, 46<\/span><\/i><span data-contrast=\"auto\">(6)<\/span><span data-contrast=\"auto\">, 270\u2013283.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1097\/NCC.0000000000001104\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1097\/NCC.0000000000001104<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Lambert, S. 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Psychosocial\u00a0singing\u00a0interventions for the mental\u00a0health\u00a0and\u00a0well-being\u00a0of\u00a0family\u00a0carers\u00a0of patients\u00a0with\u00a0cancer:\u00a0Results\u00a0from\u00a0a longitudinal\u00a0controlled\u00a0study.\u00a0<\/span><i><span data-contrast=\"auto\">BMJ Open, 9<\/span><\/i><span data-contrast=\"auto\">(8)<\/span><span data-contrast=\"auto\">,\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1136\/bmjopen-2018-026995\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1136\/bmjopen-2018-026995<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Green, A., Winter, N.,DiGiacomo, M., Oliffe, J. L., Ralph, N., Dunn, J. Chambers, S. K. (2022). 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A qualitative\u00a0analysis\u00a0of\u00a0caregiver\u00a0burden\u00a0during\u00a0the\u00a0recovery\u00a0process in\u00a0ambulatory\u00a0cancer\u00a0surgery.\u00a0<\/span><i><span data-contrast=\"auto\">Supportive\u00a0Care in Cancer, 30<\/span><\/i><span data-contrast=\"auto\">(7)<\/span><span data-contrast=\"auto\">, 5713\u20135721.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s00520-022-06991-x\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s00520-022-06991-x<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Aydogan, U.,Doganer, Y. C.,\u00a0Komurcu, S., Ozturk, B.,\u00a0Ozet, A. et Saglam, K.\u00a0(2016). Coping attitudes of\u00a0cancer patients\u00a0and\u00a0their\u00a0caregivers\u00a0and\u00a0quality\u00a0of life of\u00a0caregivers.\u00a0<\/span><i><span data-contrast=\"auto\">Indian\u00a0Journal of Palliative Care, 22<\/span><\/i><span data-contrast=\"auto\">(2)<\/span><span data-contrast=\"auto\">, 150.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.4103\/0973-1075.179598\"><span data-contrast=\"none\">https:\/\/doi.org\/10.4103\/0973-1075.179598<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Ysseldyk, R.,Kuran, N., Powell, S.\u00a0et\u00a0Villeneuve, P. J. (2019). Self-reported\u00a0health\u00a0impacts of\u00a0caregiving\u00a0by\u00a0age\u00a0and\u00a0income\u00a0among\u00a0participants of the Canadian 2012 General Social Survey.\u00a0<\/span><i><span data-contrast=\"auto\">Health\u00a0Promotion &amp;\u00a0Chronic\u00a0Disease\u00a0Prevention in Canada, 39<\/span><\/i><span data-contrast=\"auto\">(5), 169-177.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.24095\/hpcdp.39.5.01\"><span data-contrast=\"none\">https:\/\/doi.org\/10.24095\/hpcdp.39.5.01<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Kim, Y., Carver, C. S.et\u00a0Cannady, R. S. (2020).\u00a0Bereaved\u00a0family\u00a0cancer\u00a0caregivers\u2019\u00a0unmet\u00a0needs:\u00a0Measure\u00a0development\u00a0and validation.\u00a0<\/span><i><span data-contrast=\"auto\">Annals\u00a0of\u00a0Behavioral\u00a0Medicine, 54<\/span><\/i><span data-contrast=\"auto\">(3), 164\u2013175.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1093\/abm\/kaz036\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1093\/abm\/kaz036<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Fenton, A. T. H. R., Ornstein, K. A., Dilworth-Anderson, P., Keating, N. L., Kent, E. E., Litzelman, K.,Enzinger, A. C., Rowland, J. H. et Wright,\u00a0A. A.\u00a0(2022). Racial and\u00a0ethnic\u00a0disparities\u00a0in cancer\u00a0caregiver\u00a0burden\u00a0and\u00a0potential\u00a0sociocultural\u00a0mediators.\u00a0<\/span><i><span data-contrast=\"auto\">Supportive\u00a0Care in Cancer, 30<\/span><\/i><span data-contrast=\"auto\">(11), 9625\u20139633.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s00520-022-07367-x\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s00520-022-07367-x<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">CanadianPartnership\u00a0Against Cancer. 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Needs assessment of family caregivers of cancer survivors: Three cohorts comparison.\u00a0<\/span><i><span data-contrast=\"auto\">Psycho-Oncology, 19<\/span><\/i><span data-contrast=\"auto\">(6), 573\u2013582.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1002\/pon.1597\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1002\/pon.1597<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Lam<\/span><span data-contrast=\"auto\">bert, S. D., Hulbert-Williams, N., Belzile, E., Ciampi, A. et Girgis, A. (2018). Beyond using composite measures to analyze the effect of unmet supportive care needs on caregivers&#8217; anxiety and depression.\u00a0<\/span><i><span data-contrast=\"auto\">Psycho-Oncology, 27<\/span><\/i><span data-contrast=\"auto\">(6), 1572\u20131579.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1002\/pon.4696\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1002\/pon.4696<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Siegel, R., DeSantis, C., Virgo, K., Stein, K., Mariotto, A., Smith, T., Cooper, D., Gansler, T., Lerro, C., Fedewa, S., Lin, C., Leach, C., Cannady, R. S., Cho, H., Scoppa, S., Hachey, M., Kirch, R., Jemal, A. et Ward, E. (2012). Cancer\u00a0<\/span><span data-contrast=\"auto\">treatment\u00a0and\u00a0survivorship\u00a0statistics, 2012.\u00a0<\/span><i><span data-contrast=\"auto\">CA:\u00a0A Cancer Journal for\u00a0Clinicians, 62<\/span><\/i><span data-contrast=\"auto\">(4), 220\u2013241.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.3322\/caac.21149\"><span data-contrast=\"none\">https:\/\/doi.org\/10.3322\/caac.21149<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Pace, A., Dirven, L., Koekkoek, J. A. F., Golla, H., Fleming, J.,Rud\u00e0, R., Marosi, C., Le Rhun, E., Grant, R., Oliver, K., Oberg, I., Bulbeck, H. J., Rooney, A. G., Henriksson, R., Pasman, H. R. W., Oberndorfer, S., Weller, M.,\u00a0Taphoorn, M. J. B.\u00a0et\u00a0European Association of Neuro-Oncology palliative care task force\u00a0(2017). European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma.\u00a0<\/span><i><span data-contrast=\"auto\">The Lancet\u00a0Oncology, 18<\/span><\/i><span data-contrast=\"auto\">(6), e330\u2013e340.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1016\/S1470-2045(17)30345-5\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1016\/S1470-2045(17)30345-5<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Bennardi, M., Diviani, N., Gamondi, C., St\u00fcssi, G., Saletti, P., Cinesi, I. et Rubinelli, S. (2020). Palliative care utilization in oncology and hemato-oncology: A systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families. <\/span><i><span data-contrast=\"auto\">BMC Palliative Care, 19<\/span><\/i><span data-contrast=\"auto\">(1), 1\u201317.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1186\/s12904-020-00556-7\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1186\/s12904-020-00556-7<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Krug, K.,Miksch, A., Peters-Klimm, F., Engeser, P. et Szecsenyi, J. (2016). Correlation between patient quality of life in palliative care and burden of their family caregivers: A prospective observational cohort study. <\/span><i><span data-contrast=\"auto\">BMC Palliative Care, 15<\/span><\/i><span data-contrast=\"auto\">(4)<\/span><span data-contrast=\"auto\">,\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1186\/s12904-016-0082-y\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1186\/s12904-016-0082-y<\/span><\/a><span data-contrast=\"none\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><\/li>\n<li><b><span data-contrast=\"auto\"><\/span><\/b><span data-contrast=\"auto\">Kleine, A.-K.,Hallensleben, N., Mehnert, A., H\u00f6nig, K. et Ernst, J. (2019). Psychological interventions targeting partners of cancer patients: A systematic review. <\/span><i><span data-contrast=\"auto\">Critical\u00a0Reviews\u00a0in\u00a0Oncology\/Hematology, 140<\/span><\/i><span data-contrast=\"auto\">, 52\u201366.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1016\/j.critrevonc.2019.05.008\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1016\/j.critrevonc.2019.05.008<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Butow, P. N., Price, M. A., Bell, M. L., Webb, P. M., deFazio, A., Australian Ovarian Cancer Study Group, Australian Ovarian Cancer Study Quality of Life Study Investigators et Friedlander, M. (2014). Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life<\/span><span data-contrast=\"auto\">,\u00a0distress\u00a0and unmet needs.\u00a0<\/span><i><span data-contrast=\"auto\">Gynecologic Oncology, 132<\/span><\/i><span data-contrast=\"auto\">(3), 690-697. <\/span><a href=\"https:\/\/doi.org\/10.1016\/j.ygyno.2014.01.002\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1016\/j.ygyno.2014.01.002<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Rowland, C.,Hanratty, B., Pilling, M., van den Berg, B. et Grande, G. (2017). The contributions of family caregivers at end of life: A national post-bereavement census survey of cancer carers\u2019 hours of care and expenditures. <\/span><i><span data-contrast=\"auto\">Palliative\u00a0Medicine, 31<\/span><\/i><span data-contrast=\"auto\">(4), 346\u2013355.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1177\/0269216317690479\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1177\/0269216317690479<\/span><\/a><span data-contrast=\"none\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Yabroff, K. R.et\u00a0Kim, Y. (2009). Time costs associated with informal caregiving for cancer survivors.\u00a0<\/span><i><span data-contrast=\"auto\">Cancer, 115<\/span><\/i><span data-contrast=\"auto\">(18), 4362\u20134373.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1002\/cncr.24588\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1002\/cncr.24588<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Korman, M. B., Ellis, J., Moore, J., Bilodeau, D.,Dulmage, S., Fitch, M., Mueller, C., Sahgal, A. et\u00a0Moroney, C. (2021).\u00a0Dignity\u00a0therapy\u00a0for patients\u00a0with\u00a0brain\u00a0<\/span><span data-contrast=\"auto\">tumours: Qualitative reports from patients, caregivers and practitioners. <\/span><i><span data-contrast=\"auto\">Annals\u00a0of palliative\u00a0medicine,\u00a010<\/span><\/i><span data-contrast=\"auto\">(1), 838\u2013845.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.21037\/apm-20-553\"><span data-contrast=\"none\">https:\/\/doi.org\/10.21037\/apm-20-553<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">den Herder-van der Eerden, M., Hasselaar, J., Payne, S., Varey, S., Schwabe, S., Radbruch, L., Van Beek, K., Menten, J., Busa, C., Csikos, A., Vissers, K. et Groot, M. (2017). How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries.\u00a0<\/span><i><span data-contrast=\"auto\">Palliative Medicine, 31<\/span><\/i><span data-contrast=\"auto\">(10), 946\u2013955.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1177\/0269216317697898\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1177\/0269216317697898<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Alam, S., Hannon, B.et\u00a0Zimmermann, C. (2020). Palliative care for\u00a0family\u00a0caregivers.\u00a0<\/span><i><span data-contrast=\"auto\">Journal of\u00a0Clinical\u00a0Oncology, 38<\/span><\/i><span data-contrast=\"auto\">(9), 926\u2013936.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1200\/JCO.19.00018\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1200\/JCO.19.00018<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Dumont, I., Dumont, S.et\u00a0Mongeau, S. (2008). End-of-life care and the\u00a0grieving\u00a0process:\u00a0Family\u00a0caregivers\u00a0who\u00a0have\u00a0experienced\u00a0the\u00a0loss\u00a0of a terminal-phase cancer patient.\u00a0<\/span><i><span data-contrast=\"auto\">Qualitative\u00a0Health\u00a0Research, 18<\/span><\/i><span data-contrast=\"auto\">(8), 1049\u20131061.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1177\/1049732308320110\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1177\/1049732308320110<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Perez\u2010Ord\u00f3\u00f1ez, F., Fr\u00edas\u2010Osuna, A., Romero\u2010Rodr\u00edguez, Y. et del\u2010Pino\u2010Casado, R. (2016). Coping strategies and anxiety in caregivers of palliative cancer patients.\u00a0<\/span><i><span data-contrast=\"auto\">European\u00a0Journal of Cancer Care, 25<\/span><\/i><span data-contrast=\"auto\">(4), 600\u2013607.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1111\/ecc.12507\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1111\/ecc.12507<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Dug<\/span><span data-contrast=\"auto\">gleby, W. D. et Williams, A. M. (2010). Living with hope: Developing a psychosocial supportive program for rural women caregivers of persons with advanced cancer.\u00a0<\/span><i><span data-contrast=\"auto\">BMC Palliative Care,<\/span><\/i><span data-contrast=\"auto\">\u00a0<\/span><i><span data-contrast=\"auto\">9<\/span><\/i><span data-contrast=\"auto\">(3) (2010).\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1186\/1472-684X-9-3\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1186\/1472-684X-9-3<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Benites, A. C., Rodin, G., Leite, A. C. A. B., Nascimento, L. C. et Dos Santos, M. A. (2021). The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta-synthesis.\u00a0<\/span><i><span data-contrast=\"auto\">European\u00a0Journal of Cancer Care, 30<\/span><\/i><span data-contrast=\"auto\">(4), e13424.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1111\/ecc.13424\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1111\/ecc.13424<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Palacio, C. et Limonero, J. T. (2020). The relationship between the positive aspects of caring and the personal growth of caregivers of patients with advanced oncological illness: Posttraumatic growth and caregiver.\u00a0<\/span><i><span data-contrast=\"auto\">Supportive Care in Cancer, 28<\/span><\/i><span data-contrast=\"auto\">(7), 3007\u20133013.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s00520-019-05139-8\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s00520-019-05139-8<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Canadian Cancer Society. 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Preparing family caregivers for death and bereavement: Insights from caregivers of terminally ill patients.\u00a0<\/span><i><span data-contrast=\"auto\">Journal of Pain and\u00a0Symptom\u00a0Management, 37<\/span><\/i><span data-contrast=\"auto\">(1), 3\u201312.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1016\/j.jpainsymman.2007.12.010\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1016\/j.jpainsymman.2007.12.010<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Guldin, M.-B.,Vedsted, P.,\u00a0Zachariae, R.,\u00a0Olesen, F.\u00a0et\u00a0Jensen, A. B. 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Associations of financial hardship with suicidal ideation among bereaved cancer caregivers.\u00a0<\/span><i><span data-contrast=\"auto\">Journal of Psychosocial Oncology, 41<\/span><\/i><span data-contrast=\"auto\">(2), 226\u2013234.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1080\/07347332.2022.2067803\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1080\/07347332.2022.2067803<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Morris, S.E. et Sannes, T. S. (2021). Bereavement care for family caregivers of neuro-oncology patients. <\/span><i><span data-contrast=\"auto\">Annals of Palliative Medicine, 10<\/span><\/i><span data-contrast=\"auto\">(1), 953\u2013963.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.21037\/apm-20-708\"><span data-contrast=\"none\">https:\/\/doi.org\/10.21037\/apm-20-708<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Caserta, M., Utz, R., Lund, D.,Supiano, K.\u00a0et\u00a0Donaldson, G. (2019). Cancer caregivers\u2019 preparedness for loss and bereavement outcomes: Do\u00a0preloss\u00a0caregiver attributes matter?\u00a0<\/span><i><span data-contrast=\"auto\">OMEGA\u2014Journal of Death and Dying, 80<\/span><\/i><span data-contrast=\"auto\">(2), 224\u2013244.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1177\/0030222817729610\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1177\/0030222817729610<\/span><\/a><span data-ccp-props=\"{&quot;335559685&quot;:0}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Canadian Cancer Society. 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Economic burden associated with cancer caregiving. <\/span><i><span data-contrast=\"auto\">Seminars\u00a0in\u00a0Oncology\u00a0Nursing.<\/span><\/i><i><span data-contrast=\"none\">\u00a035<\/span><\/i><span data-contrast=\"none\">(4), 333\u2013336.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1016\/j.soncn.2019.06.003\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1016\/j.soncn.2019.06.003<\/span><\/a><span data-contrast=\"none\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><\/li>\n<li><span data-contrast=\"auto\">Ba<\/span><span data-contrast=\"auto\">mgboje-Ayodele, A., Levesque, J. V., Gerges, M. et Girgis, A. (2021). The male perspective: A mixed methods study of the impact, unmet needs and challenges of caring for women with breast\u00a0 <\/span><i><span data-contrast=\"auto\">Journal of Psychosocial\u00a0Oncology, 39<\/span><\/i><span data-contrast=\"auto\">(2)<\/span><span data-contrast=\"auto\">, 235\u2013251.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1080\/07347332.2020.1850600\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1080\/07347332.2020.1850600<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Steiner, A. M. et Fletcher, P. C. (2017). Sandwich generation caregiving: A complex and dynamic role.\u00a0<\/span><i><span data-contrast=\"auto\">Journal of\u00a0Adult\u00a0Development, 24<\/span><\/i><span data-contrast=\"auto\">, 133\u2013143.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/s10804-016-9252-7\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/s10804-016-9252-7<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Lambert, S. D., Levesque, J. V.et Girgis, A. (2016). The impact of cancer and chronic conditions on caregivers and family members. Dans Koczwara, B. (dir.), <\/span><i><span data-contrast=\"auto\">Cancer\u00a0and chronic conditions: Addressing the problem of multimorbidity in cancer patients and survivors<\/span><\/i><span data-contrast=\"auto\">\u00a0(p. 159\u2013202). Springer.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1007\/978-981-10-1844-2_6\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1007\/978-981-10-1844-2_6<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Lambert, S., Audet, L. A., Ould Brahim, L., Schaffler, J., Garcia Ramirez, C., Frati, F., Sangha, S., Howard, A. F. et Lambert, L.\u00a0(2025). Family-Reported Outcomes Measures (FROMs) Screening Programs: An integral part of chronic disease management.<\/span><i><span data-contrast=\"auto\">Cancer Control, 32<\/span><\/i><span data-contrast=\"auto\">,\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1177\/10732748251339217\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1177\/10732748251339217<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Arsenault, C.et\u00a0Brochu, E. (2024).\u00a0<\/span><i><span data-contrast=\"auto\">Trousse d\u2019outils pour am\u00e9liorer la transition vers \u00ab La vie apr\u00e8s le cancer \u00bb. <\/span><\/i><a href=\"https:\/\/msss.gouv.qc.ca\/professionnels\/documents\/projet-transition\/trousse-outils_transition-vie-apres-cancer.pdf\"><span data-contrast=\"none\">https:\/\/msss.gouv.qc.ca\/professionnels\/documents\/projet-transition\/trousse-outils_transition-vie-apres-cancer.pdf<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Grbich, C. F., Maddocks, I. et Parker, D. (2001). Family caregivers, their needs, and home-based palliative cancer services.\u00a0<\/span><i><span data-contrast=\"auto\">Journal of Family\u00a0Studies, 7<\/span><\/i><span data-contrast=\"auto\">(2)<\/span><span data-contrast=\"auto\">, 171\u2013188.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.5172\/jfs.7.2.171\"><span data-contrast=\"none\">https:\/\/doi.org\/10.5172\/jfs.7.2.171<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Villalba, E. (2025). <\/span><i><span data-contrast=\"auto\">Am\u00e9liorer le soutien aux personnes atteintes d&#8217;un cancer en ce qui concerne leur sexualit\u00e9 et leur bien-\u00eatre sexuel. Recommandations du Symposium sur le cancer, la sexualit\u00e9 et le bien-\u00eatre sexuel \u2013 11 septembre 2023.<\/span><\/i><span data-contrast=\"auto\"> Coalition priorit\u00e9 cancer au Qu\u00e9bec.\u00a0<\/span><a href=\"https:\/\/coalitioncancer.com\/wp-content\/uploads\/2025\/10\/FR_Symposium-Cancer-et-sexualite_rapport-1.pdf\"><span data-contrast=\"none\">https:\/\/coalitioncancer.com\/wp-content\/uploads\/2025\/10\/FR_Symposium-Cancer-et-sexualite_rapport-1.pdf<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">CHU de Qu\u00e9bec\u2013Universit\u00e9 Laval. (2023). <\/span><i><span data-contrast=\"auto\">Sexualit\u00e9, apparence, intimit\u00e9, couple, identit\u00e9, pendant et apr\u00e8s le cancer.<\/span><\/i><span data-contrast=\"auto\">\u00a0<\/span><a href=\"https:\/\/www.chudequebec.ca\/patient\/maladies-soins-et-services\/m-informer-sur-ma-maladie-ou-ma-condition\/sexualite-apparence-intimite-couple-identite.aspx\"><span data-contrast=\"none\">https:\/\/www.chudequebec.ca\/patient\/maladies-soins-et-services\/m-informer-sur-ma-maladie-ou-ma-condition\/sexualite-apparence-intimite-couple-identite.aspx<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Yuen, E. Y., Wilson, C., Livingston, P. M., White, V. M., McLeod, V. et Hutchinson, A. M. (2023). Burden prediction in cancer caregivers: Role of social support and connectedness. <\/span><i><span data-contrast=\"auto\">BMJ\u00a0Supportive\u00a0&amp;\u00a0Palliative\u00a0Care, 14.<\/span><\/i><span data-contrast=\"auto\">\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1136\/spcare-2022-004070\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1136\/spcare-2022-004070<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Pottle, J., Hiscock, J., Neal, R. D. et Poolman, M. (2020). Dying at home of cancer: Whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study).\u00a0<\/span><i><span data-contrast=\"auto\">BMJ Supportive &amp; Palliative Care, 10<\/span><\/i><span data-contrast=\"auto\">(1)<\/span><span data-contrast=\"auto\">.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.1136\/bmjspcare-2016-001145\"><span data-contrast=\"none\">https:\/\/doi.org\/10.1136\/bmjspcare-2016-001145<\/span><\/a><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Soci\u00e9t\u00e9 canadienne du cancer. (2025).<\/span><i><span data-contrast=\"auto\">Types de traitements.<\/span><\/i><span data-contrast=\"auto\">\u00a0<\/span><a href=\"https:\/\/cancer.ca\/en\/treatments\/treatment-types?_gl=1*a2j4h1*_up*MQ..*_gs*MQ..&amp;gclid=CjwKCAjw0sfHBhB6EiwAQtv5qRGxYMBSVV59VB9svmSvxf1vjKWetIpaBZ35Vrx5pi5-iPcwQKvw0BoCPQ0QAvD_BwE&amp;gbraid=0AAAAAoQGxRJhsGWbhoqsuhdiv1cEa-KNn\"><span data-contrast=\"none\">https:\/\/cancer.ca\/en\/treatments\/treatment-types?_gl=1*a2j4h1*_up*MQ..*_gs*MQ..&amp;gclid=CjwKCAjw0sfHBhB6EiwAQtv5qRGxYMBSVV59VB9svmSvxf1vjKWetIpaBZ35Vrx5pi5-iPcwQKvw0BoCPQ0QAvD_BwE&amp;gbraid=0AAAAAoQGxRJhsGWbhoqsuhdiv1cEa-KNn<\/span><\/a><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Nguyen, N. H., Subhan, F. B., Williams, K. et Chan, C. B. (2020). Barriers and mitigating strategies to healthcare access in Indigenous communities of Canada: A narrative review. <\/span><i><span data-contrast=\"auto\">Healthcare, 8<\/span><\/i><span data-contrast=\"auto\">(2), 112.\u00a0<\/span><a href=\"https:\/\/doi.org\/10.3390\/healthcare8020112\"><span data-contrast=\"none\">https:\/\/doi.org\/10.3390\/healthcare8020112<\/span><\/a><span data-contrast=\"auto\">\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:240,&quot;335559739&quot;:240}\">\u00a0<\/span><b><span data-contrast=\"auto\"><\/span><\/b><\/li>\n<li><span data-contrast=\"auto\">Yangzom, K., Masoud, H., Hahmann, T. et Centre de la statistique et des partenariats autochtones. (2023, 6 octobre).<\/span><i><span data-contrast=\"auto\">\u00a0Acc\u00e8s aux soins de sant\u00e9 primaires chez les membres des Premi\u00e8res Nations vivant hors r\u00e9serve, les M\u00e9tis et les Inuit, 2017 \u00e0 2020.\u00a0<\/span><\/i><span data-contrast=\"auto\">S\u00e9rie th\u00e9matique sur les peuples autochtones\u00a0(publication no\u00a041-20-0002). Statistique Canada.\u00a0<\/span><span data-contrast=\"none\"><a href=\"https:\/\/www150.statcan.gc.ca\/n1\/pub\/41-20-0002\/412000022023005-fra.htm\">https:\/\/www150.statcan.gc.ca\/n1\/pub\/41-20-0002\/412000022023005-fra.htm<\/a><\/span><\/li>\n<li>Bjorgvinsdottir, K. et Halldorsdottir, S. (2014). Silent, invisible and unacknowledged: Experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scandinavian Journal of Caring Sciences, 28 (1), 38-48. <a href=\"https:\/\/doi.org\/10.1111\/scs.12030\">https:\/\/doi.org\/10.1111\/scs.12030<\/a><\/li>\n<li>Joseph, S., Sempik, J., Leu, A. et Becker, S. (2019). Young carers research, practice and policy: An overview and critical perspective on possible future directions. Adolescent Research Review, 5, 77\u201389. <a href=\"https:\/\/doi.org\/10.1007\/s40894-019-00119-9\">https:\/\/doi.org\/10.1007\/s40894-019-00119-9<\/a><\/li>\n<li>Moore, T. et McArthur, M. (2007). We\u2019re all in it together: Supporting young carers and their families in Australia. Health &amp; Social Care in the Community, 15 (6), 561\u2013568. <a href=\"https:\/\/doi.org\/10.1111\/j.1365-2524.2007.00719.x\">https:\/\/doi.org\/10.1111\/j.1365-2524.2007.00719.x<\/a><\/li>\n<li>Rivard, M., L\u00e9pine, A., Mercier, C. et Morin, M. (2015). Quality determinants of services for parents of young children with autism spectrum disorders. Journal of Child and Family Studies, 24(8), 2388\u20132397. <a href=\"https:\/\/doi.org\/10.1007\/s10826-014-0041-2\">https:\/\/doi.org\/10.1007\/s10826-014-0041-2<\/a><\/li>\n<li>Courcy, I. et des Rivi\u00e8res-Pigeon, C. (2013). Intervention intensive et travail invisible de femmes : le cas de m\u00e8res de jeunes enfants autistes et de leurs intervenantes. Nouvelles Questions F\u00e9ministes, 32, 28-43. https:\/\/doi.org\/10.3917\/nqf.322.0028<\/li>\n<\/ol>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_3 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_7 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_16 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"el_modal_popup_0 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_6\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"qui-sont-elles\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_4 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_8 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_17 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_5 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>WHO ARE THEY? <\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_0 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/12\/20240906_OBS_trajectoire_iconeSTST.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/12\/20240906_OBS_trajectoire_iconeSTST.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-11612\" alt=\"Ic\u00f4ne de statistiques\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">STATISTICS<\/h4><div class=\"et_pb_blurb_description\"><p>According to a Canada-wide survey, approximately 11% of all caregivers support someone with cancer (1). This proportion makes cancer the second leading cause of caregiver involvement after aging-related issues (1). Translated to Quebec, this could potentially represent more than 150,000 caregivers. Moreover, cancer affects nearly half of the population, with 1 in 2.2 Canadians (45%) expected to receive a cancer diagnosis in their lifetime. Therefore, everything suggests that the number of caregivers supporting someone suffering from cancer will increase in the coming years (126).<\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_6 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Cancer is a large group of diseases that begin when abnormal cells grow uncontrollably, invade nearby tissues, and may spread to other parts of the body (130). Beyond the medical aspects, cancer affects the overall health and well-being of the person, creating a wide range of needs\u2014physical, emotional, and social\u2014that must be addressed.<\/p>\n<p>Caregivers of people with cancer provide substantial and critical unpaid care, ranging from emotional support and household management to complex medical tasks, often with little to no formal training and recognition (3, 38). Cancer\u2019s sudden intrusion into one\u2019s life and unpredictable course thrusts caregivers into demanding, complex roles with little warning\u2014often requiring rapid adaptation, emotional resilience, and ongoing flexibility (1). Additionally, for many caregivers, supporting someone with cancer raises many important questions about different matters such as life, their life plans, end of life, grief, death in general and their own death, as well as spiritual questions and beliefs. This can be very challenging for them, in addition to having to take on many tasks to support the person they care for (131).<\/p>\n<p>As more people survive cancer and receive care outside the hospital, more caregivers are needed\u2014making it essential to understand who they are, what they need, and how to support them (7).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_1 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>This trajectory focuses on people supporting someone with cancer, highlighting the challenges and influencing factors associated with this role. The realities and challenges experienced by people with cancer, although very important, are not the main focus of this trajectory.<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_1 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_11\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"genre\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_5 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_9 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_18 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_7 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>GENDER<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_8 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Over half of cancer caregivers are women\u2014most often spouses, daughters, or daughters-in-law\u2014though male involvement is growing (1, 110). Female cancer caregivers typically report higher burden, poorer health, and greater anxiety and depression than male caregivers, along with more unmet needs and greater difficulty balancing caregiving with other responsibilities (16, 19, 48, 49). They are more inclined to feel exhaustion and fatigue compared to male caregivers (8).\u00a0 Women often shoulder a disproportionate share of tasks while also juggling work, parenting or a marriage, leading to disrupted roles and heightened emotional distress (57). These disparities may stem from caregiving demands and the emotional weight of traditional gender roles (37). All the while, societal expectations indicate that women must remain stoic and selfless (57).<\/p>\n<p>Male caregivers experience substantial strain too (5). Several interconnected reasons contribute to this: gender norms may discourage emotional expression and help-seeking, which can heighten depressive symptoms and perceived burden (16). Common unmet needs of male caregivers include addressing problems related to sex life, understanding the experience of the person with cancer, and receiving emotional support for themselves (145). Compared with women, men more frequently rely on avoidant or externalizing coping strategies (e.g., alcohol, smoking), which correlates with worse mental and physical outcomes (16).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_2 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_13\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"age\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_6 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_10 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_19 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_9 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>AGE<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_10 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The age of the caregiver influences their experience. Caregivers who are 75 years of age and older are more likely to spend more hours on caregiving activities (51). Retired older caregivers may have the capacity to devote significant time to caregiving; however, this is seldom how they imagined their later years (10). While some studies suggest that older caregivers cope very well and experience fewer financial hardships compared to younger groups, potentially due to accumulated life experience, other research indicates that they still face significant mental health challenges (51, 16). At the same time, many caregivers are themselves aging\u2014particularly spousal caregivers\u2014who must balance their own health challenges while providing care and support to their partner (127).<\/p>\n<p>Younger to middle-aged caregivers (35\u201364 years old) are particularly vulnerable to negative health impacts because they often simultaneously balance employment, parenting, and caregiving (146). This triple load decreases time and energy to fulfill their responsibilities (146). Whereas older adults might face more physical limitations, younger caregivers are more at risk of psychological distress (16). Financial strain is also common, as these caregivers may face limited resources, vocational instability, childcare expenses, and have fewer savings, leaving little margin to absorb the costs of caregiving (10, 19). These responsibilities can interfere with key personal milestones such as career advancement.\u00a0<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_3 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"lieu-de-residence\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_7 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_11 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_20 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_11 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>LOCALITY<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_12 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>For cancer caregivers, a rural or urban context can significantly shape their experiences, influencing access to care, financial strain, lifestyle disruptions, and available support networks (57). In rural settings, distance to hospitals often adds to an already heavy burden, with long commutes intensifying fatigue for patients and caregivers and creating barriers to timely care (13).\u00a0 To mitigate these challenges, many rural caregivers make major life changes to accompany the care recipient\u2014such as relocating closer to metropolitan cancer centers\u2014to reduce travel time, lower costs, and access specialized care (58). This relocation can create ripple effects\u2014disrupting rural home life, forcing caregivers to leave employment, reducing their capacity to manage domestic or farm responsibilities, and separating caregivers from their own support systems (58). Financial impacts are also greater: rural caregivers lose more work hours than urban caregivers due to the distance between their homes and care and service centers (59). They also incur higher out-of-pocket expenses for medications, transportation, and other care-related costs (58).<\/p>\n<p>Access to specialized care, especially palliative services, is a key point of divergence. Urban settings offer more consistent hospital and home-based care, while rural caregivers often face long travel distances, limited home visit availability from professionals, and poorer care coordination (59). These disparities contribute to higher hospital death rates for rural patients and increased burden for their caregivers (58).<\/p>\n<\/div><\/div><div class=\"et_pb_text_13 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Rurality also disproportionately affects specific caregiver demographics, including women, younger caregivers, and those cared for by someone other than a spouse or child. Rural caregivers are more likely to care for multiple recipients and to report having had no choice in assuming the role (58). Also, for people living in remote areas, such as in many Indigenous communities, extreme weather can further limit or even cut off access to services for extended periods.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_4 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_14\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"situation-socioeconomique\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_8 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_12 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_21 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_14 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>SOCIOECONOMIC SITUATION <\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_15 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>For caregivers with lower socioeconomic status (SES), the weight of their responsibilities is especially heavy. Caregivers with lower levels of education and income are more likely to experience emotional distress and report poorer physical health outcomes (16, 56). One study found that caregivers without a college education had more difficulties navigating the healthcare system, understanding health-related information, and communicating with the healthcare team (10). Full-time employment combined with a lower educational background can predict greater anxiety and depression among caregivers (16).<\/p>\n<p>SES is also linked to the intensity of caregiving. Caregivers with lower SES tend to spend more hours per day providing care (104). This increased time commitment may be due to a lack of resources to spend on formal support (144). However, caregivers with higher income and educational levels also experience considerable stress when attempting to balance demanding careers with caregiving responsibilities (16). Across all income levels, strong social support remains a key protective factor against caregiver strain (16). For individuals with lower incomes or socioeconomic status, social support plays an even more crucial role. This shows that social support plays a particularly important role in helping families with fewer financial resources to cope with the burden of caring for someone (84).\u00a0<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_5 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_9\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"appartenance-a-un-groupe-minoritaire\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_9 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_13 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_22 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_16 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>BELONGING TO A MINORITY GROUP<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_17 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Cancer caregivers belonging to a minority group often experience systemic exclusion and discrimination in healthcare settings, which might further exacerbate their burden and significantly shape the caregiving experience (53, 60, 61).<\/p>\n<p>Underserved groups\u2014including new immigrants, people of color, Indigenous peoples, and 2SLGBTQIA+ individuals\u2014frequently encounter challenges that extend beyond the daily tasks of caregiving. From difficulties navigating healthcare systems to feeling dismissed or misunderstood by healthcare professionals, these caregivers often face an added layer of emotional and logistical strain (53).<\/p>\n<p>Minority caregivers report more unmet needs when reintegrating into life after the person\u2019s death, including challenges related to grief, employment, finances, and re-establishing social connections (52). Additionally, minority groups often experience delayed diagnoses and less engagement in routine cancer screening, leading to later-stage detection and, in turn, more intensive caregiving demands (1, 54). These disparities are compounded by systemic barriers such as racism, discrimination, and the lasting effects of colonialism, which limit access to timely, culturally appropriate healthcare (53).<\/p>\n<ul>\n<li><strong>Caregivers of color<\/strong> are more likely to report poor communication with healthcare professionals and to feel that their race or ethnicity negatively influences the quality of care received (55). Also, Black and Hispanic caregivers, who often take on more intensive caregiving roles, spend more hours per week, and manage a broader range of tasks compared to White caregivers (53). This greater involvement is accompanied by heightened financial strain (55). Yet, paradoxically, some studies \u2013 primarily U.S.-based \u2013 report that Black caregivers experience lower emotional and physical burden, potentially due to strong social networks, cultural values around familial responsibility, and a greater sense of preparedness (53). Similarly, Hispanic caregivers have reported emotional well-being on par with or better than that of White caregivers. While these cultural and community strengths may offer some protection, they do not erase the structural inequities these caregivers face.<\/li>\n<li><strong>2SLGBTQIA+ caregivers<\/strong> report feeling worried about being excluded from medical decision-making or unrecognized as a caregiver due to the nature of their relationship with the person they care for or the lack of legal protections (60). Such discrimination can lead to worse health outcomes and increased feelings of loneliness (61). The experience of being dismissed, misgendered, or misunderstood by healthcare professionals can create a pervasive sense of fear and emotional strain (60). A recurring theme is the erasure of queer identity in care settings (61), whereby caregivers speak of \u201chiding one\u2019s sexuality\u201d or \u201ctaking a backseat from being 2SLGBTQIA+\u201d.<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_blurb_2 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>\u00a0I remember questioning my sexuality, like, \u2018Hmm I don\u2019t entirely feel straight\u2019, but I\u2019m already dealing with so much, I have no emotional energy left to deal with this. So, I just kind of ignored it. <br \/><strong>Cedar, a non-binary, bisexual person caring for their father (cited in 60)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_18 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><ul>\n<li><strong>Indigenous caregivers<\/strong> face significant challenges in accessing care and services (156). While many agreements and accommodations with Indigenous peoples are made at the federal level, health care delivery is managed by the provinces (157). This division of responsibility often creates confusion and makes it difficult to implement federal commitments within provincially governed health systems.<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_text_19 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The completion of this trajectory revealed a glaring lack of literature on caregiving in oncology within minority groups \u2013 particularly Indigenous communities (10).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_6 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_10\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"organisation-et-acces\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_10 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_14 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_23 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_20 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>ORGANIZATION AND ACCESS TO SERVICES<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_21 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Cancer caregivers face a wide range of needs throughout their trajectory, yet access to services that meet those needs remains limited. Many caregivers take on their roles suddenly and with little preparation, which increases their burden and reduces their ability to support care receivers effectively (3, 29). Navigating the healthcare system can be overwhelming: caregivers frequently lack clear guidance and can struggle to find answers to their questions and the support they need (11). Most cancer care happens in an ambulatory clinic, which shifts complex medical tasks\u2014symptom monitoring, medication management, infection vigilance, performing technical procedures, equipment handling\u2014from clinic to home, turning caregivers into 24\/7 coordinators, with minimal or no training (38, 7). Caregivers often act as intermediaries with healthcare providers; however, short clinical visits (typically 15\u201320 minutes) leave limited time to address caregivers\u2019 questions and concerns (38). Poor care coordination and limited access to local specialists further increase the burden placed upon caregivers (76).<\/p>\n<p>Access to services can be influenced by several factors (31, 53, 58, 59, 144), including:<\/p>\n<ul>\n<li>Membership in a minority group<\/li>\n<li>Locality<\/li>\n<li>Socioeconomic status<\/li>\n<li>Recognition of their role as a caregiver<\/li>\n<li>Information about available services<\/li>\n<li>Stage during which services are needed<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_7 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_7\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"lien-avec-la-personne-aidee\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_11 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_15 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_24 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_22 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>RELATIONSHIP WITH THE CARE RECEIVER<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_23 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Spouses and partners often serve as primary caregivers, particularly when they live with the person they care for (23, 24). Living together typically involves taking on a range of daily responsibilities\u2014coordinating care, attending appointments, and managing symptoms. While these shared experiences can strengthen the bond between partners, they can also increase caregiver burden (1, 24).<\/p>\n<p>Caregiving spouses frequently emphasize the heavy responsibility of supporting their partner through illness, even when motivated by a promise, such as during marriage: \u201cFor better or for worse, in sickness and in health\u201d (5). Being a caregiver to a partner means that the caregiver will take on new roles in relation to their partner, which may redefine the relationship. For example, some caregivers report that sharing their life with someone with cancer and supporting them affects intimacy and sexuality, either through a decrease or complete cessation of sexual relations within the couple, creating feelings of anger, confusion, sadness, and loneliness in the majority of caregivers (135, 136, 137, 138, 139). Although the subject of sexuality remains taboo, these issues have a considerable impact on their personal and relational lives throughout their caregiving trajectory. In addition to a considerable decrease in sexual intercourse, many caregivers report that sexual relations within their couple are no longer spontaneous and generate anxiety at the time of performance, or that they hesitate before initiating sexual activity for fear of putting pressure on their partner or hurting them by touching sensitive areas (138). Some caregivers will ignore or neglect their own sexual needs in order to prioritize their partner&#8217;s health and daily needs (138) (for more information, see the subsection on intimacy and sexuality needs in <em>Resources and Support for caregivers<\/em>).They may even feel guilty about wanting to talk about their sexual needs with their partner, even if their relationship is characterized by excellent communication:<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_3 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p style=\"text-align: left;\">[My husband] didn&#8217;t need to hear all that. [&#8230;] [H]e was the victim.<em><br \/><\/em><strong>Margaret, caregiver for her spouse with cancer (cited in 140)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_24 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>However, caregiving relationships extend beyond partners. Parents, adult children, siblings, and even close friends or extended relatives may also step in (1, 19, 25). These caregivers, who often do not live with the care receiver, may follow different trajectories shaped by distance, logistical challenges, and competing roles. Non-co-residing caregivers may face emotional strain, such as guilt or worry about not being physically present and must navigate the difficulties of managing care at a distance (18). While they may not provide intensive daily care, they often coordinate transportation, support medical decision-making, and manage care remotely, which can still impose significant stress (1).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_8 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_15\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"sante-de-la-ppa\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_12 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_16 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_25 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_25 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>CAREGIVERS&#8217; HEALTH<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_26 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregivers are increasingly described as \u201cco-patients\u201d because of the strong interdependence between their well-being and that of the person they care for (5, 10). The health of cancer caregivers both shapes and is shaped by the caregiving trajectory. On one hand, caregiver health is a contextual factor influencing how caregiving responsibilities are experienced and sustained; on the other hand, the physical and emotional demands of caregiving can themselves negatively affect caregiver health over time (102, 129).<\/p>\n<p>Caregivers often experience parallel declines in physical and emotional health during treatment (5, 10), with their well-being mirroring patient symptoms and emotions\u2014feeling well when the patient is doing well and distressed when the patient is unwell. In some cases, they even report worse quality of life and slower recovery than the care recipients themselves (10).\u00a0 Prior illnesses (e.g., migraines) may worsen, whereas others develop new ones (e.g., hypertension, eczema) (13).<\/p>\n<p>The role of caregiving can be more challenging when one is managing one&#8217;s own health condition while providing care to someone with cancer. Many must manage chronic illnesses of their own (1). For example, older caregivers who frequently support aging spouses or relatives often face greater challenges due to physical limitations and higher rates of comorbidities (127). Caregivers of older adults are often older themselves and roughly 40% have comorbidities as well. Thus, they are more likely to report their health as fair to poor (3, 38).<\/p>\n<p>Caregiver health is particularly critical during certain moments of the trajectory, such as before the death of the person. Better mental health at this stage is associated with a lower risk of post-bereavement depression, anxiety, and prolonged grief (48), whereas caregiver physical pain consistently predicts poor bereavement outcomes (69). Considering caregiver health throughout the trajectory is therefore essential, both to understand their capacity to provide care and to protect their long-term well-being.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_9 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_16\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"type-de-cancer\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_13 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_17 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_26 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_27 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>CANCER TYPE, STAGE, FORM AND INTENSITY OF SUPPORT<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_28 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Cancer caregivers are among the groups providing the highest levels of support, highlighting the intensity of their role (1). Those with multiple caregiving responsibilities face even greater stress, and when care is not rotated among family members, primary caregivers are more likely to feel overwhelmed (82).<\/p>\n<\/div><\/div><div class=\"et_pb_text_29 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregiver responsibilities may include:<\/p>\n<ul>\n<li><strong>emotional support<\/strong> &#8211; offering companionship, listening to concerns, helping manage fear and uncertainty, attending appointments, being present through the highs and lows of the cancer (1). Providing emotional support is one of caregivers\u2019 most frequent and essential tasks, yet it is also among the most demanding and the one they feel least prepared for (26). Caregivers often carry the emotional weight not just of the care receiver&#8217;s distress, but their own as well (1).<\/li>\n<li><strong>personal care<\/strong> &#8211; feeding, bathing, dressing, assisting with transfers between bed, chair, or toilet (1).<\/li>\n<li><strong>medical care<\/strong> &#8211; administering medications and injections, managing catheters, wound care, colostomy bags (16). With changing demographics and fewer healthcare resources, caregivers are more and more involved in critical roles once performed by healthcare professionals (141, 142).<\/li>\n<li><strong>household tasks &#8211; <\/strong>grocery shopping, cooking, cleaning, outdoor chores (23). When a person becomes ill, caregivers often step in to manage household duties once shared or handled by the person with cancer.<\/li>\n<li><strong>financial management<\/strong> &#8211; household budgeting, paying bills, covering costs related to the illness, liaising with insurance providers and government agencies to secure financial assistance or benefits (1, 27)<\/li>\n<li><strong>advocacy, decision-making, and care coordination tasks<\/strong> &#8211; seeking out resources, clarifying medical information, facilitating communication between the person with cancer and healthcare professionals, scheduling appointments, arranging or providing transportation to medical appointments, promoting healthy behaviours, and helping to manage the person&#8217;s nutrition (1, 8, 16, 23). In performing these tasks, caregivers often act as knowledge brokers, obtaining information about the person&#8217;s medical needs, interpreting and synthesizing it, and then sharing it to support and facilitate care (28).<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_blurb_4 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It was useful to be two people to hear the explanations, so I accompanied him to all his medical appointments, [to] reassure him too, because afterwards, when you leave the doctor\u2019s office, it seems like everything gets magnified. He had a lot of questions, like, \u2018Did he really say that to me? Is that it? Is it worse?\u2019 So to be able to clarify and repeat the answers&#8230; I wrote everything down\u2014I acted as his secretary. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_30 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The level of support required varies greatly depending on several factors, including the type of cancer. Brain cancer, for example, often leads to rapid neuro-behavioral changes and physical decline, requiring intensive caregiver involvement early on (44). Lung cancer similarly imposes a heavy caregiving burden due to its high symptom load and extensive physical and psychological effects (46). The support needed also depends on the cancer stage. People diagnosed at an earlier stage tend to have better treatment experiences, lower morbidity, and improved quality of life (47). In contrast, advanced cancer drastically disrupts the social lives of both people living with cancer and caregivers, making it difficult to maintain normal routines and intensifying feelings of social isolation (18). Caregivers of patients with advanced cancer often struggle to balance caregiving with other responsibilities, with the emotional toll of supporting someone who may already feel detached from life (18).<\/p>\n<p>Certain types of cancer will also have a greater impact on the couple&#8217;s relationship when the caregiver supports a partner (135, 137). For example, in the case of brain cancer or tumors, the person receiving care may experience memory loss and reduced cognitive abilities, making intimate moments or sexual activities simply impossible (138). Certain cancers, such as prostate and cervical cancer, can have direct consequences on bodily functions, such as the inability to have an erection or engage in penetrative sex, which may cause some caregivers to stop initiating any sexual activity so as not to upset their partner, even though their sexuality is no longer what it used to be (138). Finally, certain types of cancer, such as prostate, ovarian, and cervical cancer, can compromise the ability of PPA patients and their partners to have children \u201cnaturally\u201d, which affects the caregiving trajectory and its impacts on caregivers (137, 138).<\/p>\n<p>On the other hand, a lot of patients with cancer have at least one long-term health condition at the time of the diagnosis (143). Comorbidities can also influence the timing of a cancer diagnosis, either prompting earlier medical attention due to overlapping symptoms or delaying detection due to symptom misattribution (70). Co-morbidities not only complicate cancer treatment but also place greater demands on caregivers, who must manage a more complex role (1). As a result, this elevated caregiving intensity can worsen the caregiver\u2019s health and well-being as well as impact their psychological state with distress, anxiety and depression, having links to caregivers of care receivers with comorbidities (1).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_10 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_17\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"pre-diagnostic\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_14 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_18 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_27 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_31 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>PRE-DIAGNOSIS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_5 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>There is a lack of literature specifically highlighting the caregiver\u2019s experience within this stage of the caregiving trajectory. The limited research available during this stage is primarily focused on the care receiver&#8217;s experiences, and the information below was inferred from this context.<\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_32 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In the pre-diagnosis stage, individuals may experience potential cancer symptoms or other concerning signs and may be undergoing testing (62). The length of the pre-diagnosis stage varies for potential patients and caregivers. Some consult primary care professionals for months or years, while dismissal and misdiagnosis can occur (54). Studies suggest that people may tend not to suspect they have cancer, so caregivers often play a critical role in early detection by recognizing initial symptoms and noticing the person is &#8220;not being themselves&#8221; (10). They have to encourage the person to seek medical attention and thus help initiate the diagnostic process\u2014contributing to more timely diagnosis and treatment (64).<\/p>\n<p>Waiting for a definitive diagnosis is characterized by significant uncertainty and anxiety for both the care receiver and their caregivers (5, 42, 62, 63). This uncertainty can come from anticipation of the diagnosis itself, but for some it is amplified, for example, when a known family history of cancer increases the likelihood of a positive result (62). Caregivers frequently provide essential emotional support in this uncertain stage and often begin actively searching for information about potential symptoms or diagnoses to better support the care receiver, especially as information needs escalate (63). While patients may consult their family physician and specialists, they also rely on information from caregivers, friends, printed materials, and the internet, with caregivers often helping to evaluate the reliability of this information (11).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_6 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p>Caregivers face needs rooted in uncertainty and the emotional strain of awaiting answers. They often seek to better understand the diagnostic process, including which tests are being conducted, expected timelines for results, and what these tests might reveal (62). Interpreting the care receiver\u2019s symptoms and their potential causes is another key concern, as caregivers try to make sense of what these signs could indicate while remaining supportive (62).<\/p>\n<p>During this stage, they may need guidance on how best to emotionally and practically support the person they care for through the stress of medical testing (62). Access to reliable and trustworthy sources of information becomes particularly important as caregivers try to educate themselves about possible diagnoses and prepare for the next steps (11). Finally, given the high levels of ambiguity and worry, caregivers themselves often struggle with how to manage their own anxiety and may benefit from resources focused on coping with uncertainty (62).<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_11 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_18\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"diagnostic-de-cancer\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_15 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_19 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_28 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_33 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>DIAGNOSIS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_7 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>If it was a disease that you could actually see, it would have had an effect on your everyday life, but in practice it doesn\u2019t yet do that, so in that way it is very strange. There\u2019s no difference except that we know something is going to happen.<br \/><strong>Caregiver (cited in 11)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_34 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Even though for many caregivers, cancer caregiving trajectories actually begin during the pre-diagnosis phase, their caregiving trajectory \u201cofficially\u201d starts once a cancer diagnosis is confirmed. Caregivers often find themselves &#8220;thrown into&#8221; a cancer life, with little warning or opportunity to prepare (25).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_8 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>There was an ad at one point [on TV] where people were getting a cancer diagnosis, and then they all just fell over: it was like that for me. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_35 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Caregivers at this stage navigate a landscape of uncertainty with little space to process emotionally and no forewarning or training for the multifaceted demands ahead (2, 42). Unlike chronic conditions that may emerge gradually, cancer symptoms often become apparent only weeks or months before diagnosis, resulting in a rapid and disorienting entry point into caregiving (66).<\/p>\n<p>The diagnosis itself is typically experienced as a shock. It triggers psychological turmoil, leading to mental health decline. Caregivers may feel overwhelmed by the potential consequences of the illness (11). They can experience intense anxiety and distress equaling or exceeding that of the person they care for (1).\u00a0 All the while, caregivers are providing emotional support to the care receiver (67). Some may try to hide their negative emotions to maintain a positive attitude for the person they care for (67), a strategy referred to as \u201cprotective buffering\u201d (68).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_9 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I hold them (my thoughts and feelings) for myself<br \/><strong>Caregiver, patient\u2019s mother (cited in 67)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_36 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>This can, in turn, lead to emotional exhaustion and neglect of their own well-being (1).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_10 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I needed help, but I had never asked for it<br \/><strong>Caregiver, patient\u2019s wife (cited in 67)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_37 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The diagnosis and the accompanying uncertainty about the prognosis disrupt caregivers\u2019 sense of control over time, forcing them to put future plans\u2014holidays, career ambitions, and financial decisions\u2014on hold (12).\u00a0 As one caregiver expressed, \u201c<em>It is not about winning or losing the battle against cancer; it\u2019s about learning to live with it<\/em>\u201d (12). Caregivers supporting a spouse with cancer also experience changes in their sexuality as soon as the diagnosis is announced. Even before treatment begins, a cancer diagnosis often leads to a decrease in sexual activity within a couple due to the anxiety that sets in:<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_11 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[I]n the beginning [pause] because you know you\u2019re concerned and you\u2019re not interested in sex.<br \/><strong>Jessie, caregiver for her spouse with breast cancer (cited in 138)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_38 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>How the diagnosis is communicated also shapes caregivers\u2019 experiences. If clinicians convey hope for recovery when delivering the news, it can positively influence the caregiving trajectory, in contrast to a more somber, pessimistic tone (12).<\/p>\n<p>Information-seeking is one of the prominent tasks caregivers take on after a diagnosis to try to better understand the illness, treatment options, and how to best support the patient (77). Caregivers frequently do not know where to turn to with the many questions that follow a diagnosis (11), and lack clear points of contact or reassurance during decision-making due to insufficient clinician support (11).<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_12 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p>When learning the diagnosis, caregivers need information about the illness, prognosis, and treatment options to support decision-making (16). Although they prefer to receive clear, tailored information directly from healthcare professionals, they often encounter communication gaps\u2014such as insufficient detail or a lack of personalization\u2014which can leave them feeling unprepared and overwhelmed (55). As a result, many turn to alternative sources, including the internet or peer support networks, to fill these gaps, even though such resources vary in trustworthiness and can be time-consuming to navigate (55).<\/p>\n<p>Caregivers describe this information-seeking process as a way to regain a sense of control, expressing a strong desire to \u201cget more knowledge, to learn, to ask, to read\u201d in response to the uncertainty of the diagnosis (77). They require clear and accessible guidance on the disease, treatment options, side effects, caregiving tasks, and available services (56). When caregivers experience distress early in the cancer trajectory, it often persists\u2014and in some cases intensifies\u2014over time, suggesting that time alone does not alleviate all needs (16, 17). <\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_12 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_19\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"debut-des-traitements\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_16 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_20 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_29 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_39 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>BEGINNING OF TREATMENT<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_40 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Treatment often begins immediately after the diagnosis, leaving caregivers little space to emotionally process what is happening (42). As the person receiving the diagnosis undergoes treatment and requires increasing levels of care, the caregiving role becomes intensely demanding\u2014often leaving caregivers feeling overwhelmed, unprepared, and emotionally depleted (25). <\/span><span>\u00a0<\/span><\/p>\n<p><span>This stage is associated with a range of psychological, physical, social, and financial impacts:\u00a0 <\/span><\/p>\n<ul>\n<li><span><strong>Psychological impacts: <\/strong><\/span><span>At the start of treatment, caregivers often worry about side effects, treatment effectiveness, and managing symptoms (14). Constant worry about prognosis, fear of death, fatigue, and the juggling of caregiving and work responsibilities contribute to high levels of anxiety, depression, and distress among caregivers <\/span><span>(13, 16, 56)<\/span><span>. The emotional toll is amplified by their close involvement in managing care and witnessing the care recipient suffering firsthand <\/span><span>(19, 24)<\/span><span>. Caregivers often describe the treatment stage of the trajectory as an \u201cemotional roller coaster,\u201d marked by feelings of guilt\u2014such as pressuring the person they care for to follow treatment or witnessing the toll of side effects\u2014and a profound sense of helplessness <\/span><span>(11, 19).<\/span><\/li>\n<li><span><strong>Physical impacts<\/strong><\/span><span>: Caregivers face substantial physical strain\u2014including fatigue, sleep disturbances, and pain\u2014that can deteriorate their health faster than that of non-caregivers, sometimes worsening chronic conditions <\/span><span>(13, 16, 27)<\/span><span>. Health habits often decline, with less exercise, poor diet, and weakened immune function, particularly among middle-aged caregivers <\/span><span>(13, 51, 71)<\/span><span>.<\/span><\/li>\n<li><span><strong>Social impacts:<\/strong><\/span><span> As treatment becomes routine, caregivers often describe it as \u201ctaking over\u201d their lives, eclipsing social roles and highlighting the all-consuming nature of the caregiving experience <\/span><span>(15)<\/span><span>. Social isolation is common, as caregivers reduce participation in activities due to the care receiver\u2019s side effects and the need to manage multiple roles\u2014household tasks, employment, and caregiving <\/span><span>(19)<\/span><span>. Many feel unseen or unacknowledged by friends and extended family who fail to grasp the depth of the caregiver&#8217;s sacrifice <\/span><span>(42)<\/span><span>. <\/span><\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_blurb_13 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span>When <\/span><span>you are a caregiver, you forget about yourself [\u2026] you feel guilty for taking care of yourself.<br \/><\/span><strong>Women caregiver (cited in 31)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_41 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><ul>\n<li><span><strong>Relational impacts<\/strong><\/span><span>: The patient-caregiver relationship may also suffer (13, 37). Caregivers often face challenges within the relationship, including difficulty communicating with the person they care for about the illness and their own concerns (34). They may also struggle to cope with personality changes in the person during treatment or choose to hide their own feelings to protect them (13). When the care recipient is a spouse, the caregiving role can also impact the relationship (13, 37). Indeed, cancer and its treatments can lead to significant impacts on intimate and sexual relationships, sometimes leading to feelings of being &#8220;<em>just acquaintances rather than life partners<\/em>&#8221; (37). For example, treatments and surgeries related to breast cancer can redefine or impose new limits on intimacy and sexual relations between partners (138). Indeed, spouses of people with cancer say that certain parts of their partner&#8217;s body have become \u201coff limits\u201d due to the pain and discomfort experienced by the person with cancer, which can have an impact on the spontaneity and fluidity of sexual relations: <\/span><\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_blurb_14 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span>[Y]ou can\u2019t sort of suddenly give her a big cuddle.<br \/><\/span><strong><span style=\"font-size: 15px;\">Ed, caregiver of his spouse with breast cancer (cited in 138)<\/span><\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_42 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"padding-left: 14px;\"><span>Despite these difficulties, some caregivers report that the experience can lead to strengthened bonds and personal growth within their relationship with the person (15).<\/span><\/p>\n<p style=\"padding-left: 14px;\"><span><\/span><\/p>\n<ul>\n<li><span><strong>Financial impacts<\/strong><\/span><span>: Caregivers bear direct costs (e.g., transportation, medications) and indirect losses from reduced work hours or job changes. Employed caregivers frequently forgo promotions, switch to part-time roles, or work night shifts to accommodate medical appointments, compounding financial and emotional strain <\/span><span>(1, 8)<\/span><span>. <\/span><\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_text_43 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><span><strong>TREATMENT TYPE<\/strong><\/span><\/h4>\n<p><span>During treatment, people facing a cancer diagnosis typically undergo radiation, chemotherapy, and\/or surgery, while bone marrow transplantation is increasingly used for blood cancers. Other types of treatments exist (e.g. hormone therapy, immunotherapy, targeted therapy), the type of treatment depends on the type of cancer, the stage of cancer, the personal preferences and the age of the person (155). Regardless of treatment type, caregiving is constant and intense during this stage as caregivers are required to perform several tasks (19, 23).<\/span><\/p>\n<p><span><\/span><\/p>\n<h5 style=\"font-size: 16px;\"><em><strong>Surgery<\/strong><\/em><\/h5>\n<p><span>With advancements in surgical care leading to\u00a0earlier hospital discharges, caregivers are taking on a greater proportion of post-operative care <\/span><span>(75)<\/span><span>. Caregivers often feel pressured to leave the hospital before they believe the person they care for is ready, but they do not want to cause problems (49). As one caregiver reflected: <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_15 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>\u2026<span>after surgery, we felt pressured to leave\u2026we didn\u2019t feel like she was supported in [her] explanation that she wasn\u2019t feeling well enough to go\u2026I wanted to be as polite and helpful to the nursing staff\u2026in retrospect I wish I had spoken up\u2026<em><br \/><\/em><\/span><strong><span style=\"font-size: 15px;\">Caregiver (cited in 49)<\/span><\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_44 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Once discharged, caregivers report monitoring the person they care for to ensure they follow discharge instructions and do not push themselves too quickly (49). Responsibilities include assisting the person with navigating recovery at home and determining whether symptoms are expected or require immediate attention. During the early recovery period, when the person\u2019s physical function is limited, caregivers often help with activities of daily living and provide emotional support, helping the person cope with fear, frustration, or body image concerns, particularly after surgeries that involve disfigurement or loss of function (e.g., mastectomy, colostomy) <\/span><span>(49)<\/span><span>.<\/span><\/p>\n<p><span><\/span><\/p>\n<h5 style=\"font-size: 16px;\"><em><strong>Radiotherapy and chemotherapy<\/strong><\/em><\/h5>\n<p><span>Both radiotherapy and chemotherapy heavily involve caregivers to organize follow-up appointments, manage transportation, coordinate schedules of regular visits and lab tests, communicate with the healthcare team, and ensure the person adheres to treatment regimens <\/span><span>(45, 72)<\/span><span>. Caregivers frequently act as advocates and information seekers, striving to understand treatment effects and ensure timely responses to emerging concerns (1). They must also be prepared to respond to acute and sometimes unpredictable side effects like severe nausea and fever, which can force responsibilities to change rapidly <\/span><span>(16, 45, 73)<\/span><span>. <\/span><span>Ca<\/span><span>regivers also provide support with symptom relief strategies and encourage the person they care for to report issues promptly (23). As fatigue often accumulates over the course of radiotherapy and chemotherapy can leave the person <\/span><span>\u201c<\/span><span>washed out,\u201d caregivers may step in to assist with daily tasks such as hygiene, mobility (1, 11), meal preparation, and managing eating difficulties (73, 74). Emotionally, they serve as a consistent source of reassurance and comfort, helping the care receiver cope with the anxiety and isolation that can arise from the repetitive, often solitary nature of the treatment <\/span><span>(73)<\/span><span>.<\/span><\/p>\n<p><span>A distinguishing feature of radiotherapy is the daily nature of appointments <\/span><span>(73)<\/span><span>. Caregivers often manage scheduling and transportation to and from appointments, prioritizing the care receiver&#8217;s needs over their own schedule <\/span><span>(73)<\/span><span>. <\/span><span>On the other hand, chemotherapy can involve administering oral chemotherapy or medications through inserted catheters or feeding tubes and performing wound care at home <\/span><span>(1, 45)<\/span><span>. Also, due to the person\u2019s immunosuppressed state from treatment, caregivers must be attentive to prevent infections <\/span><span>(42)<\/span><span>. Caregiving during chemotherapy is not only constant but also increases over time with the accumulated side effects <\/span><span>(72)<\/span><span>.\u00a0<\/span><\/p>\n<p><span><\/span><\/p>\n<h5 style=\"font-size: 16px;\"><em><strong>Allogenic bone marrow transplant (allo-BMT)<\/strong><\/em><\/h5>\n<p><span>Allo-BMT is increasingly used as a curative treatment for patients with blood cancers (21). Caregivers of people undergoing BMT have critical roles in symptom monitoring, medication adherence, and care coordination <\/span><span>(77, 78)<\/span><span>. Importantly, caregiver responsibilities begin well before the transplant itself. People with cancer must undergo painful diagnostic procedures and frequent medical appointments to assess transplant eligibility, where caregivers provide both logistical and emotional support (10). Once approved, they are admitted for conditioning regimens\u2014typically involving several days of high-dose chemotherapy and\/or radiation to eradicate diseased and healthy marrow cells\u2014which leave them physically fragile and socially isolated, heightening their reliance on caregiver support (10). Following the BMT, the caregiving role intensifies. Caregivers administer medications and injections, transport patients to frequent follow-up visits, and maintain a clean, safe environment to protect against infection in the patient\u2019s immunosuppressed state (10, 79). They also monitor for complications, which can arise immediately or long after transplant, ranging from respiratory and neurological issues to severe psychological and physical symptoms (10). Given these risks, patients often require round-the-clock caregiving for at least 100 days post-transplant, and sometimes much longer (10). During this demanding period, caregivers not only deliver medical and practical assistance but also provide vital emotional support\u2014often described by patients as being their rock (79). Practical responsibilities extend beyond clinical care, encompassing daily household management, meal preparation, and shopping, which grow in importance as patients continue to struggle with fatigue and diminished physical functioning even a year after treatment (79). Beyond hands-on care, caregivers act as advocates and communicators, navigating interactions with multidisciplinary transplant teams, interpreting complex medical information, and facilitating decision-making. This breadth of responsibility often leaves caregivers feeling stretched beyond capacity. As one caregiver reflected: <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_16 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span>I <\/span><span>was constantly feeling like I had to be everywhere all the time, and I wasn&#8217;t doing anything well.<br \/><\/span><strong>Caregiver (cited in 81)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_blurb_17 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>Caregivers at this stage particularly need: <\/span><\/p>\n<ul>\n<li><span>information about what to expect, treatment benefits and side effects, as well as alternative therapies (76, 83).<\/span><\/li>\n<li><span>skill development training to manage the complex, hands-on tasks involved in cancer care (e.g. tube feeding, managing dysphagia) (19).<\/span><\/li>\n<li><span>opportunities to ask questions and discuss their concerns directly with staff (37).<\/span><\/li>\n<li><span>continued support and reassurance to sustain their confidence or self-efficacy in managing care and stress (147).<\/span><\/li>\n<li><span>emotional and psychological support in coping with fears related to the care receiver\u2019s physical or mental decline<\/span><span>,<\/span><span> and help processing thoughts and emotions around death and dying <\/span><span>(83)<\/span><span>.<\/span><\/li>\n<li><span>social support from friends and family members (21).<\/span><\/li>\n<li><span>access to respite care or home healthcare services (82).<\/span><\/li>\n<li><span>access to legal or financial counsel<\/span><span>l<\/span><span>ing <\/span><span>(82)<\/span><span>. <\/span><\/li>\n<li><span>clear, consistent, and honest communication with healthcare professionals <\/span><span>(37)<\/span><span>.<\/span><\/li>\n<li><span>to feel included in the care process and valued as part of the healthcare team <\/span><span>(34)<\/span><span>.<\/span><\/li>\n<li><span>to be heard while advocating for the care receiver without being perceived as overly anxious (41).<\/span><\/li>\n<li><span>accessible support systems and resources, ideally with flexible delivery methods like phone interventions due to time constraints and caregiving responsibilities <\/span><span>(1)<\/span><span>. <\/span><\/li>\n<\/ul>\n<p><span>Caregivers often under-utilize available services, particularly mental health services, due to guilt or a lack of awareness of formal support options <\/span><span>(1)<\/span><span>. Proactive screening for caregiver distress and unmet needs is recommended to identify those at highest risk and connect them with appropriate resources (31, 148).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_13 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_20\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"fin-des-traitements-actifs\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_17 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_21 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_30 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_45 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>END OF ACTIVE TREATMENTS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_46 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>The shift after the end of active cancer treatments is often jarring for caregivers who, after devoting significant time, energy, and personal sacrifice during treatment, emerge with disruptions to multiple aspects of their lives <\/span><span>(9)<\/span><span>. <\/span><\/p>\n<p><span>Post-active treatment support and access to healthcare typically decline, creating a mismatch between care receiver needs and available resources\u2014leaving caregivers at risk of prolonged burden and psychological distress. Many feel underprepared for the end of the treatment phase, struggling to meet the care receiver\u2019s evolving recovery needs with limited guidance (9, 33, 38). <\/span><\/p>\n<p><span>Lack of empathy and compassion from healthcare professionals during this transition compounds these challenges. Many caregivers report feeling dismissed, with limited support, vague reassurances (\u201c<em>everyone\u2019s different<\/em>\u201d) and inadequate follow-up, which can contribute to distress, care plan nonadherence, and dissatisfaction with the healthcare system <\/span><span>(76, 92)<\/span><span>. Barriers to follow-up care include poor care coordination and limited access to local specialists (34). Despite receiving written materials, most caregivers reported no formal end-of-treatment visit to support the transition (34).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_18 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>Just after active treatments end, caregivers need help with the uncertainty they experience while adjusting to a \u201cnew normal\u201d (87). Caregivers may struggle to reestablish social relations or intimate relationships, or may experience challenges in returning to work, addressing financial issues that accumulated during treatment or rebuilding their health (9). <\/span><\/p>\n<p><span>A common need shared by both care receivers and their caregivers at this stage is the continuity of information, services, and support to help them navigate the physical, psychosocial, practical, and financial challenges arising from diagnosis, treatment, and its impacts (149). Indeed, follow-up care remains vital <\/span><span>(76)<\/span><span>. Although caregivers may receive support during the active treatments stage, many report a troubling gap in integrated care and follow-up with specialists after this stage\u2014especially when new health difficulties emerge <\/span><span>(19)<\/span><span>. A structured and effective transition process is essential and acts as a bridge, gradually connecting the intensive treatment period with the period during which care receivers and their caregivers adapt and gradually resume their normal lives; it is equally important that preparation for this transition begin during active treatment (149).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_14 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_21\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"recidive\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_18 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_22 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_31 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_47 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>CANCER RECURRENCE<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_48 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Cancer recurrence is not simply a continuation of the previous experience but a distinct stage that may even be more difficult and discouraging for patients and their caregivers to face (125). It might mark a transition from curative treatment to palliative care, complicating the disease trajectory and heightening caregiving responsibilities (125). Others face the weight of knowing that cancer will be a lifelong presence, and the decision to restart treatment or prioritize quality of life and the relief of symptoms may be a difficult decision to make (125). Extended or renewed caregiving during recurrence is often unexpected and overwhelming (49). When cancer recurs, caregivers are often thrust back into a state of emotional turmoil and uncertainty, and families are forced once again to reorganize around the illness (128). For many, the recurrence is even more devastating than the initial diagnosis (128). <\/span><\/p>\n<p><span>\u00a0<\/span><span>This was largely due to difficult decisions about treatment options, severe treatment side-effects and the negative memories of previous treatment experiences coming to mind (128). For caregivers, recurrence often signals the collapse of hope, replaced by anxiety, insecurity about the future, and distrust in treatment (128). As a result, such caregivers frequently report a poorer quality of life than those supporting newly diagnosed patients (128). Unlike the initial diagnosis, which includes a clear treatment plan and the possibility of a cure, recurrence often heralds a shift in care goals, for example, from curative to palliative, focusing more on symptom management, quality of life, and prolonging survival (125). <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_19 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>In 2023, he started experiencing health problems again. There were some tests, and cancer of the cardia [gastroesophageal cancer] was discovered. At that point, we knew it was the end\u2014that he had a deadline because he wouldn\u2019t make it. He would receive treatments, but he wouldn\u2019t recover. They said, \u2018Okay, there will be chemotherapy, but he won\u2019t be cured.\u2019 It was [to buy] time. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_49 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers, having endured initial cancer stages, must re-evaluate their expectations and coping strategies amid a renewed sense of vulnerability and uncertainty (128). In fact, unexpectedly returning to the caregiving role due to recurrence may deplete the caregiver\u2019s coping resources, leading to an increased risk for health problems (129). Feelings of shock, regret, frustration, guilt, and helplessness are common, especially when treatment is no longer effective (16). Long-term caregivers, in particular, exhibit increased depressive symptoms and may experience declines in their physical health (129). This emotional distress can arise from factors such as fear of the illness itself, lifestyle restrictions, conflicting priorities, financial issues, and witnessing the care receiver&#8217;s suffering (19). <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_20 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>As distress escalates, some families grow closer, while others fracture under the pressure, highlighting the importance of supporting caregivers\u2019 psychological well-being and family functioning throughout this stage (125). Strong social support is essential, as caregivers of patients with prolonged cancer often report increasing loneliness and social isolation over time. Conversely, greater social support is consistently associated with improved well-being (42, 102). Effective communication with healthcare professionals also plays a critical role\u2014when caregivers receive clear, compassionate, and timely information about recurrence, treatment options, and prognosis, they feel more prepared and less overwhelmed (125). Caregivers frequently express a strong need for information on early warning signs of recurrence, both to reduce anxiety and to facilitate timely help-seeking and medical consultation (125).\u00a0 <\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_15 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"vie-apres-le-cancer\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_19 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_23 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_32 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_50 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>SURVIVORSHIP: ADAPTING TO A NEW REALITY<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_51 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Cancer caregiving continues well beyond active treatment and may last for years or decades <\/span><span>(2)<\/span><span>. Caregivers continue to play multifaceted and evolving roles as care receivers move from active treatment into long-term management and recovery. Caregivers are central to facilitating the survivor\u2019s transition to a \u201cnew normal,\u201d supporting recovery while maintaining vigilance for signs of recurrence <\/span><span>(16)<\/span><span>. Caregivers assist survivors in adopting or maintaining healthy behaviours such as proper nutrition, physical activity, medication adherence, and attending follow-up appointments (76). They may continue to coordinate healthcare services and advocate for the survivor\u2019s needs, especially when transitioning from oncology to primary care settings (94).\u00a0 <\/span><\/p>\n<p><span>Sometimes recovery is slower than what cancer survivors and caregivers would like, and both cancer survivors and caregivers learn to manage these expectations <\/span><span>(76)<\/span><span>. With cancer increasingly resembling a chronic condition, survivors may experience lingering symptoms, functional impairments and late effects of treatments, which require sustained caregiver involvement <\/span><span>(8, 86)<\/span><span>. Depending on the cancer and treatment, caregivers may continue to monitor and manage lingering side effects or adapt to new, unexpected ones\u2014including those related to irreversible changes like tracheostomy, altered appearance, or difficulty swallowing <\/span><span>(1, 76)<\/span><span>. Intimate relationships may also be affected in the long term (37). The fact that there is no longer any active treatment does not mean a return to the sexuality and intimacy that the couple enjoyed before the onset of cancer. Some caregivers mention that they and their partners have regained some sexual activity, although it is less frequent than before. On the other hand, other caregivers mention that the onset of cancer and their experience through this ordeal have profoundly changed their sex lives, requiring a lot of time and work before regaining desire and pleasure:\u00a0\u00a0 <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_21 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>It was after treatment and a while after that, we thought something was missing. We tried again, but there was no success, so we have really worked hard to get things working again. It is now in the past; it has worked.<br \/><strong>Caregiver of his spouse with cervical cancer (cited in 137)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_52 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Many caregivers enter survivorship expecting to <em>\u201creturn to where we had left off, to normal life<\/em>\u201d <\/span><span>(76)<\/span><span>, only to encounter a \u201creality of uncertainty\u201d marked by unpredictable follow-ups, ongoing care responsibilities, and shifting emotional needs <\/span><span>(19)<\/span><span>. As one caregiver put it:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_22 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I need to have patience and understand it is a marathon, not a sprint.<br \/><strong>Caregiver (cited in 76)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_53 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Survivorship care varies widely, and caregivers face numerous barriers\u2014fragmented care coordination, limited access to local specialists, transportation issues, and financial burdens (76). As follow-up from healthcare professionals decreases over time, caregivers are often left to manage complex needs with limited guidance (9), underscoring the enduring and underrecognized burden they face during survivorship (38). Those heavily burdened during treatment remain particularly vulnerable, with distress continuing for years (17, 65). <\/span><\/p>\n<p><span>In addition to anxiety and depression, caregivers report worries and uncertainty about recovery trajectories, recurrence, and managing unpredictable symptoms <\/span><span>(76)<\/span><span>. They may remain concerned about the possibility of late treatment side effects, secondary diseases caused by treatment (e.g., cardiovascular disease) or the development of new cancers (86). Fear of cancer recurrence is common, the worry or concern about the cancer coming back or progressing, affecting approximately 48% of caregivers, often at levels equal to or exceeding those of care receivers <\/span><span>(88)<\/span><span>.\u00a0 It remains high even when the person is in remission and can arise at any sign of a physical problem (89, 120). It is more prevalent among younger female caregivers, those with limited emotional support, and those caring for someone with greater severity or distress <\/span><span>(90, 91)<\/span><span>. <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_23 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>Even five years post-diagnosis, 40% of caregivers report unmet needs (96). Over time, caregivers\u2019 needs shift\u2014from focusing primarily on the person\u2019s care to prioritizing their own well-being, typically around 1\u20132 years post-diagnosis. This includes attending to their own health and considering the impact the cancer has had on their career and relationships (87, 96). While less visible, caregivers must also learn to redefine their roles, transitioning from \u201cprotector\u201d to \u201cpartner,\u201d \u201cson,\u201d \u201cdaughter,\u201d \u201cbrother,\u201d \u201csister,\u201d or other relational roles, while attending to their own needs and boundaries as the survivor regains independence (95).<\/span><\/p>\n<p><span>Coping strategies such as emotional acceptance, hope, self-care, and connection are strongly associated with improved psychological outcomes and role satisfaction (48). Resilience is a key protective factor, and a proactive mindset can help reduce psychosocial distress, particularly when paired with caregivers\u2019 efforts to focus on their own health and maintain a positive outlook throughout survivorship (37). As caregiving responsibilities shift from acute demands to long-term support, self-care practices\u2014such as exercise, stress management, and hobbies\u2014become increasingly important to prevent burnout and preserve a sense of control (97). Nonetheless, reengaging in healthy behavio<\/span><span>u<\/span><span>rs, including physical activity, hobbies, medical screenings, or dietary changes, can remain challenging when caregiving responsibilities persist (9). Caregivers can therefore benefit from a range of resources, including peer support, support groups, and psychological or spiritual wellness services (149).<\/span><\/p>\n<p><span>During this stage, both cancer survivors and their caregivers report a high need for information, covering issues such as the risk of recurrence and new cancers, the prevention and management of comorbid conditions, and the late or long-term effects of treatment (149). Social support remains vital\u2014whether through family, friends, faith communities, or peer networks\u2014and bolsters caregivers\u2019 confidence and emotional resilience (14).<\/span><\/p>\n<p><span>For spousal caregivers in particular, renegotiating relationship dynamics\u2014shifting from caregiver back to partner\u2014can be unexpectedly difficult, especially if intimacy or roles changed during treatment (120). Many caregivers reflect on the toll cancer has taken on their relationships and report frustration at feeling invisible once active treatment ends (87). Coping together as a couple, through humo<\/span><span>u<\/span><span>r, optimism, shared problem-solving, or spirituality, has been shown to strengthen emotional resilience (37). This transition also requires open communication with the cancer survivor, as both may be coping with physical or emotional aftereffects (120). Honest conversations about challenges can help preserve intimacy and support mutual adjustment to post-cancer life (89).<\/span><\/p>\n<p><span>Later in survivorship, as patients approach the five-year survival milestone, caregivers\u2019 unmet needs often center on monitoring recurrence (e.g., managing fear of cancer recurrence), disease progression (e.g., processing feelings about death and dying), and recovery that may not be progressing as expected (76, 87, 96). Financial insecurity can also persist, with many caregivers continuing to seek support services (96). Additionally, caregivers frequently report a lack of self-efficacy as they transition to survivorship and navigate the new challenges associated with this stage (76).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_16 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"sortir-et-post-aidance\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_20 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_24 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_33 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_54 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>END OF CAREGIVING AND POST-CAREGIVING PERIOD<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_24 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p><span>The literature on post-cancer-caregiving is limited, with few studies directly addressing cancer caregivers\u2019 experiences once active caregiving responsibilities have ended. As such, the content below is largely extrapolated from the broader survivorship literature that considers caregiver experiences years after a cancer diagnosis.<\/span><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_55 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>The end of caregiving, rather than restoring normalcy, often marks the beginning of a new and emotionally complex adjustment period. This transition can occur for various reasons, such as the complete remission of the illness or the death of the person being cared for.<\/span><\/p>\n<p><span>At this stage, caregivers often seek to process their own experience and make sense of the caregiving trajectory <\/span><span>(89)<\/span><span>. Caregivers may find it challenging to transition out of their caregiving role, especially when their identity has become entwined with caregiving (9). After months or years of prioritizing the care receiver\u2019s well-being, caregivers may begin to reinvest activities they once enjoyed and carve out time for personal renewal <\/span><span>(120)<\/span><span>. Reconnecting with hobbies, friends, or family\u2014such as sharing a meal or seeing a movie\u2014can help restore a sense of normalcy, especially after relationships were strained or neglected during caregiving <\/span><span>(120)<\/span><span>. Some caregivers feel isolated as the intensive support they once received fades (89). Because others may hesitate to reach out, caregivers may need to initiate rebuilding social ties. <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_25 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>In post-caregiving period, caregivers may still face unmet needs, such as support in coping with fears of cancer recurrence, managing bereavement, or adjusting to the \u201cnew normal\u201d of post-caregiving (93). This adjustment period often requires attention to their own mental and physical well-being (93). <\/span><\/p>\n<p>&nbsp;<\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_blurb_26 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I was worried 24 hours a day, and then [when my brother passed away] I felt kind of lost. I had the habit of saying to myself, \u2018Oh my God, is he okay?\u2019 But he wasn\u2019t there anymore. It felt like something was missing in what I was doing. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_56 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>The transition from caregiving to life beyond caregiving may involve reintegrating into the workplace (124), rebuilding social connections (120), or resuming self-care routines (120) that were set aside during the illness. Reestablishing interpersonal relationships can be challenging, as friends and family may have moved forward with their own lives (89). Additionally, caregivers may struggle to relate to people who have not experienced cancer firsthand or the loss of someone close (89). <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_57 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><strong>REMISSION <\/strong><\/h4>\n<p><span>The process of slowing down after an intense fight with cancer and a demanding caregiving experience can feel as if \u201c<em>you\u2019ve lost purpose<\/em>\u201d (120). Although remission brings relief, the abrupt slowing down of responsibilities can feel disorienting. Many cancer caregivers report feeling unprepared for this transition, struggling to redefine their identity and purpose after months or years of intense involvement in the person\u2019s care. What they once hoped for\u2014a return to normalcy\u2014can feel strange or even unsettling (120). <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_58 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><strong>BEREAVEMENT<\/strong><\/h4>\n<p><span>Post-caregiving can be even more challenging when it coincides with bereavement, this period of grief and mourning after the death of the care receiver <\/span><span>(89)<\/span><span>. In 2025, 87,400 Canadians were expected to die of cancer, leaving behind their bereaved caregivers (113). Although grief is a natural response, it may take months or even years to adapt\u2014not only to the loss of the care recipient, but also to the loss of shared dreams and the caregiver identity itself <\/span><span>(118)<\/span><span>. Some bereaved cancer caregivers experience prolonged and intense grief, marked by deep yearning, difficulty accepting the loss, and ongoing social or functional impairments (115, 116). Alarmingly, up to 40% of bereaved cancer caregivers experience complicated grief at 6 months post-loss, compared to about 11% in the general bereaved population after natural deaths (115, 116). Up to a quarter continue to struggle with complicated grief 18 months post-loss (115).\u00a0 <\/span><\/p>\n<p><span>Bereaved caregivers commonly report higher levels of depressive symptoms than those caring for survivors in remission <\/span><span>(48)<\/span><span>, and for some, these feelings persist long-term. Simultaneously, caregivers may continue to face repercussions of their caregiver\u2019s role as financial uncertainty remains after having shouldered practical and administrative tasks such as funeral planning, legal paperwork, and managing finances or estates <\/span><span>(119)<\/span><span>. <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_27 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>Unmet needs during bereavement often increase over time: approximately 67% of bereaved caregivers report unmet needs 2.5 years after the person\u2019s death, rising to 80% by 5.5 years post-loss (52). Ongoing unmet needs remain a primary source of suffering during the early years of bereavement (52). These needs typically fall into two broad categories: <\/span><\/p>\n<ul>\n<li><span><strong>Managing loss<\/strong><\/span><span> and coping with grief while taking care of one&#8217;s physical and emotional health and maintaining meaningful relationships with family and friends (116). The death of a family member or friend can destabilize family dynamics, leaving caregivers feeling unsupported and isolated, particularly when their social networks had revolved around the caregiving role (52).<\/span><\/li>\n<li><span><strong>Reintegrating into life after the loss<\/strong><\/span><span> of a person they care for, such as resuming previously enjoyed social or recreational activities and rebuilding a sense of normalcy. It can be challenging for some caregivers as the transition from active caregiving to bereavement can disrupt a person&#8217;s sense of identity, leaving caregivers uncertain of their role or purpose in life (52). <\/span><\/li>\n<\/ul>\n<p><span>After the death, many caregivers engage in meaning-making and legacy work, including sharing their stories through blogs, participating in bereavement forums, or contributing to online memorials (121). When they take time during this period for reflection, positive memories may emerge\u2014particularly when caregivers feel they hono<\/span><span>u<\/span><span>red the person\u2019s wishes during the emotionally intense end-of-life stage (16). Caregivers who use active problem-solving, positive reappraisal, and who hold strong spiritual or religious beliefs often report better psychological well-being in bereavement (69). In contrast, self-blame and behavio<\/span><span>u<\/span><span>ral avoidance are linked to worsened mood (69).<\/span><\/p>\n<p><span>Whereas some find comfort in follow-up bereavement services, counselling, therapy and peer support, access often falls short of the need, revealing a gap in post-loss support (115, 122). Social support not only provides an emotional buffer but also serves as a key predictor of grief outcomes (69). Addressing family tensions early in the bereavement process is crucial to preventing family conflict and, ultimately, poorer bereavement outcomes.<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_17 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"soins-palliatifs\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_21 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_25 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_34 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_59 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>PALLIATIVE CARE<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_28 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p><span>A caregiving trajectory for palliative and end-of-life care is currently under development. Additional information on this stage will be available soon.<\/span><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_60 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Some patients transition to palliative care (PC), which aims to relieve symptoms and enhance quality of life by addressing the physical, emotional, social, and spiritual needs of both care receivers and their caregivers<\/span><span> (98). While often associated with end-of-life care, palliative care is a distinct and essential component of comprehensive cancer care. However, it faces persistent barriers. One major challenge is the widespread confusion between palliative care and hospice, with the latter more narrowly focused on the final stages of life. This misconception reinforces stigma and deters both care receivers and healthcare professionals from considering palliative care earlier in the disease trajectory (99). Compounding the issue, many healthcare professionals report uncertainty about when and how to initiate palliative care, reflecting a broader need for education and training on its core principles and benefits (99).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_29 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>My brother and I understood that the oncologist was there to treat the [cancer], but he wasn\u2019t there to address all the other symptoms. At the palliative care home [where I was volunteering], they told me, \u2018He needs a palliative care doctor.\u2019 I was scared, of course. But my goodness, how wonderful!, because they specialize in pain management. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_61 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Palliative care often extends caregivers\u2019 involvement, intensifying the emotional toll as the person\u2019s condition declines (48). Caregivers of a person in palliative care face higher and more negative repercussions on mental and physical health and well-being than those in earlier stages of the trajectory (34):<\/span><\/p>\n<ul>\n<li><span>Caregivers tend to develop negative emotions like shock, disappointment, regret, frustration and guilt if treatment becomes ineffective and the death of the patient becomes a reality (100).<\/span><\/li>\n<li><span>This stage is also marked by the highest informal care costs, driven by increased caregiving hours and significant out-of-pocket expenses\u2014such as specialized food for comfort, transportation, medications, and funeral-related preparations (8, 27).<\/span><\/li>\n<li><span>The demands of palliative care on caregiving add to the stress and shock already experienced during diagnosis, which can create or worsen psychological distress among caregivers (48, 102). As a result, caregivers often experience a decline in physical health and quality of life, sometimes more severe than those caring for care receivers at other stages of the cancer trajectory (27).<\/span><\/li>\n<li><span>Many caregivers grapple with the distress of witnessing suffering and confronting mortality, while also trying to shield the care receiver from their own fears (57). This stage is often marked by high levels of emotional exhaustion, anticipatory grief, and anxiety about the person\u2019s decline (98). As one caregiver reflected, the worst part of the caregiving experience was to \u201c<em>watch someone I cared about fade away in front of my eyes<\/em>\u201d (57).<\/span><\/li>\n<li><span>Mental health risks are heightened. Palliative care caregivers are more likely to experience psychiatric disorders than in other stages of the trajectory, reflecting increased psychological vulnerability (101).<\/span><\/li>\n<\/ul>\n<p><span><\/span><\/p>\n<p><span>In addition to hands-on care during this stage, caregivers often serve as intermediaries between care receivers and healthcare professionals, coordinating communication and seeking information to guide care decisions (1). When people with cancer experience cognitive decline or communication difficulties, caregivers are frequently thrust into decision-making roles regarding both medical care and household matters (1). Advance care planning serves as an important buffer. Completing documents such as do-not-resuscitate (DNR) orders and having early conversations about the person\u2019s wishes can help caregivers better prepare for bereavement (123). These interventions have also been shown to reduce caregivers\u2019 feelings of regret (123).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_62 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><strong>HOME-BASED PALLIATIVE CARE <\/strong><\/h4>\n<p><span>A growing trend toward earlier hospital discharges and limited access to hospice beds has led to an increase in home-based care for palliative and terminally ill patients (106). Further research has also indicated that the majority of people prefer to die at home (133). At-home palliative care presents a different set of challenges and opportunities. As care shifts from hospital to home, caregivers assume the bulk of daily responsibilities, including assisting with hygiene, administering medications and injections, managing symptoms such as nausea, breathlessness, seizures, or pain, and handling complex equipment like nebulizers (150). The impact of a person\u2019s symptoms on caregivers can vary; for example, declines in emotional functioning and worsening dyspnea have been shown to significantly increase caregiver burden (<\/span><span>100<\/span><span>). They also take on household tasks\u2014adapting meals to meet dietary needs, doing laundry, cleaning, and childcare\u2014creating an unrelenting cycle of physical and emotional labour (150). Incontinence, which requires extensive washing and constant care, adds another layer of physical and emotional strain (150). One young caregiver caring for both parents described the endless routine of showering, cooking, cleaning, and caregiving as overwhelming: <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_30 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span>I <\/span><span>get up at 6 and shower my dad and, you know, carry out the usual. <\/span><span>Every day<\/span><span> it&#8217;s just like showering, cleaning, washing, cooking, cleaning, washing, cooking and showering, and it gets endless and then back home again and you do the whole procedure again.<br \/><\/span><strong>Young caregiver (cited in 150)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_63 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers describe certain advantages to caring for the care receiver at home. For one, having a sense of normality within the oncology trajectory, often tainted by hospital stays, was a comforting change (106). The ability to sustain relationships with others, being readily available to the care receiver and having a greater sense of control over the situation were further benefits to at-home palliative care environments (106).\u00a0 <\/span><\/p>\n<p><span>Home care services do not always provide consistent care by the same nurse or staff member, which can affect the quality of care and potentially cause distress for both caregivers and care receivers (107). When the same professional is involved from the initial evaluation through to the patient\u2019s death at home, caregivers often report a greater sense of ease. As one caregiver shared:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_31 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>The palliative care doctor came to our house every week with the pharmacist. At each visit, depending on my brother\u2019s condition, they made sure his medication was still appropriate and, if needed, adjusted it on the spot to ensure he was as comfortable as possible. Between visits, we could contact them as needed. I felt so supported and truly part of the team, right up until the end. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_blurb_32 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>At this stage of the caregiving trajectory, caregivers need support in reducing the care receiver\u2019s stress, learning how to discuss cancer in social situations, and coping with a lack of recognition of their role (102). Social support is a critical factor in alleviating caregiver burden during the palliative care stage (16). Reliable assistance from family members\u2014providing social, emotional, and practical support\u2014can reduce anxiety and distress and positively influence the remainder of the caregiving trajectory (108). Caregivers who receive strong family support are more likely to perceive their experience in a positive light (57). Friends also play a valuable role by offering a compassionate ear and much-needed emotional support during this difficult time (57). One caregiver described this help as: \u201c<em>Just knowing there\u2019s somebody out there that\u2019ll listen to you and have a good cry once in a while is a good deal<\/em>\u201d (cited in 57).<\/span><\/p>\n<p><span>Early integration of palliative care can help address the needs and concerns of both the person with cancer and their caregivers, better equipping caregivers to manage the challenges of this stage (106). Team-based, family-centred support for care receivers and caregivers has been shown to improve mental health and caregiver satisfaction with the care received (107). Caregivers can benefit from support groups, services that assist with daily needs, medical or non-medical home care, and counselling (107). Additional supportive interventions, including psychoeducation and skills training, can significantly improve caregiver burden, information needs, coping strategies, physical functioning, psychological well-being, and overall quality of life (16).\u00a0 <\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_18 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"fin-de-vie-et-deces\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_22 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_26 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_35 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_64 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>END-OF-LIFE CARE AND THE PERSON\u2019S DEATH<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_blurb_33 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE.png 222w, https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/20240906_OBS_trajectoire_iconeNOTE-150x150.png 150w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-10078\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p><span>A caregiving trajectory for palliative and end-of-life care is currently under development. Additional information on this stage will be available soon.<\/span><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_65 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>During the final three months of the person\u2019s life, caregivers report providing an average <\/span><span>of <\/span><span>69.5 hours of care per week (103). Among those supporting hospice care receivers, this number rises dramatically\u2014averaging between 105 and 127 hours per week\u2014highlighting the extreme intensity of <\/span><span>end-of-life<\/span><span> caregiving (104). Balancing one\u2019s own needs with those of the person being cared for, the impact on work activities and decision-making amidst uncertainty are important challenges faced by caregivers at this stage (102). <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_34 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span>He <\/span><span>had become very weak, so I set him up in my room. I slept on the couch because I didn\u2019t want to go downstairs\u2014I felt too far away. But, let\u2019s say that in the last days, I didn\u2019t get much sleep, because with every movement, I was wondering if he needed me. [free translation]<br \/><\/span><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_66 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers providing end-of-life care strive to offer the patient any support that may increase comfort, sometimes at considerable personal cost (27). In this stage, caregivers often act as advocates to ensure that patients die in their preferred place of care (154). At this stage, caregivers play a vital role in preserving the care receiver\u2019s sense of dignity and meaning <\/span><span>(105)<\/span><span>. This is especially important because the care receiver\u2019s loss of dignity has been linked to increased distress, demoralization, and even a desire for hastened death <\/span><span>(105)<\/span><span>. A better quality of death\u2014marked by effective pain management, dignity, and alignment with the person\u2019s values\u2014can improve caregiver satisfaction with end-of-life care <\/span><span>(105, 116)<\/span><span>.<\/span><\/p>\n<p><span>The location of death matters: when care receivers die in their preferred setting, caregivers are more likely to report a sense of peace <\/span><span>(57)<\/span><span>. While the majority of patients with cancer receive hospice or palliative care at home, a significant number do so in hospital or specialized facilities, where patients often pass away. In these institutional settings, caregivers may act as intermediaries between the patient and healthcare professionals, getting help for the patient\u2019s needs, such as in cases of constipation, trouble breathing and other symptom management (120). When patients face cognitive decline or communication difficulties, caregivers are frequently thrust into decision-making roles regarding both medical treatment and broader life decisions, all while coping with emotional exhaustion, anticipatory grief, and anxiety about the patient\u2019s decline (114). Caregivers of people who died in hospital palliative care units had fewer depressive symptoms, less anger and less complicated grief than those in other hospital units, suggesting a preference for less aggressive interventions near death <\/span><span>(116)<\/span><span>.<\/span><\/p>\n<p><span>The quality of the person\u2019s end-of-life experience, advance care planning, social support, caregiver health prior to the loss of the care recipient, and coping strategies are all key protective factors that can influence caregivers\u2019 adjustment during this period (69, 123).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_35 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png\" width=\"222\" height=\"222\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2025\/12\/icone-besoins-1.png 222w\" sizes=\"(max-width: 222px) 100vw, 222px\" class=\"wp-image-19769 wp-image-11612\" alt=\"CAREGIVERS\u2019 NEEDS\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">CAREGIVERS\u2019 NEEDS<\/h4><div class=\"et_pb_blurb_description\"><p><span>Caregivers at this stage require support in preparing for the inevitable loss of the care recipient and its consequences. Although many caregivers recognize that the end of life is approaching, they often report feeling unprepared for the person\u2019s death and its aftermath (114). They may also be unready for the practical demands following death\u2014such as funeral planning, legal paperwork, and managing insurance\u2014which can further compound their distress (52). This is concerning, as unprepared caregivers or those who struggle to accept the death may experience higher levels of depression, anxiety, and complicated grief during bereavement (114).<\/span><\/p>\n<p><span>To manage the emotional toll of caregiving, particularly during end-of-life care, many caregivers rely on emotion-focused coping strategies such as acceptance, positive reframing, and maintaining hope\u2014approaches shown to reduce anxiety and foster emotional stability in situations with limited control (109). Task-oriented coping methods, such as journaling, have also been found to be beneficial, especially for caregivers of individuals with advanced cancer; these methods help caregivers mentally process stressful events, such as the death of the care recipient, and reframe their sense of hope (110). During this stage, caregivers can benefit from support groups, assistance from family, friends, and the wider community, services to support daily needs, medical or non-medical home care, and counselling (107, 116). Additional interventions, including psychoeducation and skills training, have been shown to significantly reduce caregiver burden, meet information needs, and improve coping strategies, physical functioning, psychological well-being, and overall quality of life during the end-of-life stage (16).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_19 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"communication\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_23 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_27 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_36 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_67 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>COMMUNICATION AND PARTNERSHIP WITH HEALTHCARE PROFESSIONALS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_68 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Strong communication and partnership with healthcare professionals are associated with reduced cancer caregiver burden and better outcomes (39). This allows for clear and personalized information, advice, and reassurance coming directly from healthcare professionals (44). However, caregivers often face communication gaps and challenges that hamper them in their role, such as <\/span><span>a <\/span><span>lack of personalized information and detailed explanations. Indeed, caregivers often feel there is a lack of interaction with medical professionals and that they rarely inquire about caregivers\u2019 well-being (16). Caregivers are often overlooked by the healthcare team, for example<\/span><span>,<\/span><span> in clinical discussions, which <\/span><span>makes<\/span><span> them feel invisible, overwhelmed and alone while having to navigate a complex system (31). Frustration grows when they feel dismissed, unheard, or excluded from decision-making. This lack of recognition discourages them from asking questions, hindering the development of a collaborative care partnership (41).<\/span><\/p>\n<p><span>Communication with the clinical team often serves as a protective buffer against the emotional and physical demands of caregiving, linked to higher self-efficacy, resilience, and lower burden, anxiety, and depression (20, 32). There is a strong call for healthcare systems to formally acknowledge and integrate caregivers into care plans, moving towards a <\/span><span>family-centred<\/span><span> or dyadic approach that considers both the care receiver and caregiver as a unit of care (1). Caregivers need opportunities to ask questions and discuss their concerns directly with staff and want to be &#8220;heard&#8221; while advocating for the care receiver without being perceived as overly anxious (25, 37).<\/span><\/p>\n<p><span>When caregivers&#8217; needs are addressed through compassionate communication, personalized support, and collaborative partnerships with healthcare professionals, they feel more empowered and better equipped to care for both the person with cancer and themselves (62).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_36 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>At first, the surgeon was making decisions that involved me [without consulting me]. Then at one point, I told him, \u2018Hey, I\u2019m part of the solution\u2014he\u2019s coming home with me afterwards.\u2019 [\u2026] After that, the doctor really consulted me about everything, even about discharge and leaving the hospital. [&#8230;] So we became a team. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_69 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Recognition <\/span><span>by healthcare systems is also crucial for improving communication and partnership with caregivers. Acknowledging caregivers\u2019 roles signals that they are valued as integral members of the healthcare team, rather than invisible support in the background (43).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_20 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"reconnaissance-des-ppa\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_24 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_28 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_37 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_70 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><span><strong>RECOGNITION OF CAREGIVERS<\/strong> <\/span><\/h3>\n<\/div><\/div><div class=\"et_pb_text_71 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>During their caregiving trajectory, many cancer caregivers feel unacknowledged by their circles and the healthcare professionals. They often express feelings similar to: <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_37 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>Most people don\u2019t ask me how I\u2019m doing&#8230;I think it\u2019s hard that some people only care about him [the patient].<br \/><strong>Caregiver (cited in 42)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_72 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers frequently assume their role as a given, not as an explicit choice, often as an extension of familial or marital ties (5), for example, the marital commitment to assist the person \u201cin sickness and in health\u201d (46). While approaching caregiving in this lens may strengthen caregivers\u2019 resilience, it also may contribute to its \u201cinvisibility\u201d, dismissing it as an expected marital responsibility rather than recognizing it as a specific and demanding role (5). Whether caring for a child, spouse, or aging parent, the transition into caregiving is deeply disruptive\u2014redefining identities and altering previously stable life roles overnight (1).<\/span><\/p>\n<p><span>\u00a0<\/span><span>One caregiver described:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_38 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>He became my priority. I\u2019m going to explain it like this, but it\u2019s very, very, very rational\u2014almost as if I deliberately set my own life aside. It didn\u2019t affect me, not at all. He was my priority. So, during that entire time, I didn\u2019t go anywhere. I didn\u2019t travel, I didn\u2019t make any commitments. All my friends knew that if they invited me to dinner, I could decline at five minutes\u2019 notice because he needed me. [free translation]<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_73 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>When becoming a caregiver, many caregivers report confusion about identifying with their new role:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_39 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I have gained new responsibilities, and I do not know whether I am really a caregiver or not. I assume that these are the duties of every child, but caregiving is probably something else.<br \/><strong>A 20-year-old caregiver daughter (cited in 3)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_74 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Recognition in healthcare settings can be especially challenging. They are often described as a \u201chidden workforce\u201d whose contributions are not fully acknowledged, and they express a desire to be recognized for their efforts (1, 11). Short clinical visits (typically 15\u201320 minutes) often leave little opportunity to address caregivers\u2019 roles and concerns with the healthcare team (38). Many caregivers feel unseen or helpless despite being central to the care process (11). Caregivers who are not asked about their needs or included in care planning report higher emotional stress and lower quality of life (153). Too often, caregivers\u2019 recognition is reduced to peripheral tasks such as driving patients to appointments, when in reality they are performing complex medical, emotional, and practical roles that directly affect patients\u2019 outcomes. Proactive screening by healthcare professionals for distress and unmet needs is recommended to identify those at highest risk and connect them with appropriate resources (1). Furthermore, routine assessments of caregiver needs and referrals to tailored services, including self-management tools, can reduce burden and promote well-being (31, 86).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_75 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Acknowledging <\/span><span>caregivers not only for their responsibilities but also as individuals with their own needs can lead to positive outcomes for both the caregiver and the care receiver (11, 43). Recognizing one\u2019s role as a caregiver helps reduce feelings of isolation, facilitates access to support when needed, and underscores the importance of attending to one\u2019s own emotional and practical needs. Caregivers consistently express a desire for their role to be acknowledged not only by healthcare professionals but also by patients, families, and society at large. Such recognition validates their efforts, affirms their identity beyond that of a helper or chauffeur, and strengthens their sense of competence and purpose in caregiving.\u00a0 As one caregiver shared:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_40 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I think it\u2019s important that they take us into account and that we have support services as well, because yes, the person is living [with cancer], but for us, we need help too. How am I supposed to help if I\u2019m struggling to cope with it all and manage my own emotions? (free translation)<br \/><strong>Lise, caregiver of her brother (cited in 132)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_76 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers who feel recognized report less depression, lower distress, and more positive perspectives on caregiving (43). Supportive acknowledgment, whether through healthcare teams, peer networks, or formal services, opens the door for caregivers to express their experiences, access guidance, and feel seen in their role (31).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_21 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"ressources-et-soutien\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_25 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_29 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_38 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_77 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>RESOURCES AND SUPPORT FOR CAREGIVERS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_78 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Caregivers need strong, available, responsive, inclusive, and easy-to-use support to navigate the crucial stages of their caregiving trajectory. Strengthening networks, both formal and informal, is essential to improve their resilience, mental health, and quality of life, and reduce the pressure they feel (16, 36, 37). Adequate support can improve caregivers&#8217; confidence or self-efficacy in managing care, and reduce their stress, consistently linked to quality of life (1).<\/span><span><\/span><\/p>\n<p><span><\/span><\/p>\n<h4 style=\"font-size: 18px; text-align: center;\"><strong>PRACTICAL SUPPORT<\/strong><\/h4>\n<p><span>Based on research on other categories of caregivers (158, 159, 160, 161, 162), offering quality support for the care receiver may be one of the best ways of assisting cancer caregivers, mainly because it lightens their load. Providing varied services and resources such as respite services, home care assistance, transportation services or counselling and emotional support for the assisted person could help ease the burden on caregivers, who no longer must bear these responsibilities alone.<\/span><\/p>\n<p><span><\/span><\/p>\n<h4 style=\"font-size: 18px; text-align: center;\"><span><strong>INFORMATION<\/strong><sub><\/sub><\/span><\/h4>\n<p><span>Meeting caregivers\u2019 informational needs, especially around diagnosis, treatment plans, available services and the care receiver\u2019s rights, is crucial to supporting caregivers in their caregiving tasks and decision-making process (11, 31). Clear and accessible information prevents caregivers from having to search for answers on their own, thus reducing their overall burden (11, 31). <\/span><\/p>\n<p><span>In outpatient settings, caregivers are expected to assume complex tasks\u2014processing medical information, performing technical tasks, and communicating with healthcare providers\u2014often with little or no training (33). Information and training on medical tasks, such as managing feeding tubes or wound care, are crucial for improving caregivers\u2019 confidence (49). Psychoeducational interventions and emerging digital health tools can help address caregiver needs, offering them more structured and accessible forms of support (16, 35).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_79 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>An <\/span><span>important responsibility for caregivers is to obtain, understand, synthesize, and share information about the care receiver\u2019s medical needs to facilitate care. In this process, they often become, in a sense, experts on the medical condition of the person they support. Sometimes, caregivers\u2014particularly family members and spousal caregivers\u2014may even act as information gatekeepers, deciding how and when to disclose a diagnosis or other information to the care receiver in order to alleviate the patient\u2019s fear and shock (16).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_80 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><span class=\"Aucun\"><span lang=\"EN-US\"><strong>SUPPORT FROM FAMILY AND FRIENDS<\/strong><o:p><\/o:p><\/span><\/span><\/h4>\n<p><span lang=\"EN-US\">Social support from friends and other family members predicts a reduced caregiver burden and better physical and mental health (21), can strengthen caregiver resilience (84), and can mitigate potential caregiver isolation. Indeed, the demands of caring for someone with cancer often profoundly disrupt social life. Many caregivers withdraw from leisure activities, social events, and relationships because this role demands much of their time and emotional energy (18). Some struggle to discuss the disease, as conversations are often met with discomfort or incomprehension by family and friends (13, 18). Constant disruptions in their plans, postponed appointments, cancelled outings, and missed milestones can leave caregivers feeling disconnected from their usual networks and lead to social isolation (8, 19, 20).<o:p><\/o:p><\/span><\/p>\n<p><span lang=\"EN-US\">While the level of support received from family and friends is important, perceptions of its quality may differ from one caregiver to the next (21). Over time, caregivers might develop a more negative perception of the support provided to them, with less empathy, affection, and encouragement (21). Despite this, some caregivers find that their relationships deepen, that their family ties strengthen (13, 18). Taking on caregiving responsibilities can shift relational dynamics in ways that foster connection, meaning, and purpose even in an otherwise challenging time (13, 18).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_81 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>Support <\/span><span>between caregivers and care receivers is also crucial. Open and constructive communication, self-disclosure, and attentive listening can foster an environment that promotes intimacy for both the person with cancer and their caregivers. Such communication can also strengthen interpersonal relationships by allowing patients or caregivers who may have been holding in emotions to finally express them (105). Additionally, discussing the disease or oncology trajectory early can help caregivers prepare for what to expect and facilitate earlier acceptance of the situation (105).<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_text_82 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><span lang=\"EN-US\"><strong>EMOTIONAL SUPPORT<\/strong> <o:p><\/o:p><\/span><\/h4>\n<p><span lang=\"EN-US\">Compared to people with cancer, cancer caregivers are less likely to seek emotional support and rely more often on acceptance as a coping strategy (85). Throughout the cancer trajectory, caregivers often work to maintain a positive emotional environment for both themselves and the person they care for (12). One caregiver said:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_41 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>I behaved as if it were something not very serious. In fact, I was suffering inside. I did not show it to him.<br \/><strong>Caregiver (cited in 13)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_83 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>In this context, peer support networks, both in-person and online, offer a safe space grounded in shared experience, providing comfort, emotional reinforcement and practical advice that help caregivers feel less isolated, as well as an outlet to manage their fears and emotions (20, 34, 16). Cancer helplines are another valuable resource, frequently accessed by caregivers seeking guidance or simply someone to talk to (24). Emotional support is most strongly associated with caregiver well-being, likely because it helps caregivers feel less isolated and provides an outlet for processing fears and emotions (20, 34).<\/p>\n<p>Professional support is also crucial. Psychologists, social workers, and other healthcare professionals can provide structured emotional support and guidance. They can also teach coping strategies, which are important at several points throughout the caregiving trajectory.<\/p>\n<\/div><\/div><div class=\"et_pb_text_84 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h4 style=\"font-size: 18px; text-align: center;\"><strong>SUPPORT FOR SEXUAL AND INTIMACY NEEDS<\/strong><\/h4>\n<p><span>Several caregivers supporting a spouse or partner with cancer report experiencing significant impacts on their sexuality and intimacy. The cancer experience within a couple requires major adaptation and often disrupts its balance. In oncology, sexuality is frequently downplayed; patients are often simply advised to use lubricants. However, the difficulties that caregivers encounter in their intimate and sexual lives are broad, complex, and go far beyond the partner\u2019s physical ability to engage in sexual activity. They may include fears of causing pain, difficulties communicating about sexual issues, or a considerable decrease in libido due to the burden and many demands associated with the caregiving role (138, 151).<\/span><\/p>\n<p><span>Many caregivers find their sexual lives reconfigured and adopt various forms of physical intimacy, such as individual or mutual masturbation, manual stimulation, oral sex, massage, the use of vibrators, as well as cuddling and caressing (138, 140). These practices\u2014often perceived as \u201c<\/span><span>alternative<\/span><span>\u201d compared to traditional, heteronormative sexual norms <\/span><span>centred<\/span><span> on penetration\u2014gradually become \u201cnormal\u201d and more fully integrated into the couple\u2019s relationship:<\/span><\/p>\n<\/div><\/div><div class=\"et_pb_blurb_42 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module s-block preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p>[I]f we continue to explore alternatives, then maybe some will work and we can come out of it and put together a reasonable physical relationship again. Maybe even a better one.<br \/><strong>Bob, caregiver to his wife with cancer (cited in 138)<\/strong><\/p>\n<\/div><\/div><\/div><\/div><div class=\"et_pb_text_85 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span>The ability to reconfigure sexuality within a couple facing cancer is directly linked to healthy communication and a positive relational climate. Many caregivers mention that \u201cmaking the effort\u201d to communicate is enriching, both for their sexual life and for the couple\u2019s relationship as a whole (138).<\/span><\/p>\n<p><span>To mitigate the impacts of caregiving on this aspect of life, it is essential for practitioners and professionals to address sexuality openly and to create space for discussing related taboos. It is important to allow caregivers to express their fears, anxieties, desires, and concerns during interventions (152).<\/span><\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":11,"featured_media":20084,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-19519","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Trajectory of Cancer Caregivers - Observatoireprocheaidance<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-cancer-caregivers\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Trajectory of Cancer Caregivers - 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