L'implication des PPA dans les soins et services | L’implication des personnes proches aidantes (PPA) dans les soins et services fait référence à la participation des membres de la famille, des ami·e·s ou d’autres personnes significatives dans la prise en charge et l’accompagnement des personnes usagères dans le réseau de la santé et des services sociaux (RSSS). Cela inclut la participation aux soins, aux services et aux prises de décisions, la communication et la collaboration entre les PPA et les professionnel·le·s, les formations adaptées pour soutenir les PPA dans leur rôle, ainsi que la prise en compte de leurs besoins dans le RSSS. | | ▫️ Abdallah, J. P., Morel, S. B. A., Soboleva, N., Quan, J., Price, C., & Goldfarb, M. (2025). A digital tool to improve family engagement in acute care: The NGAGE randomized pilot feasibility trial. CJC Open. https://doi.org/10.1016/j.cjco.2025.03.007 ▫️ Azimzadeh, D., Lapierre, A., Bouaouina, Z., Williamson, D., Mailhot, T., & Arbour, C. (2025). ICU nurses’ perceptions on family involvement in delirium care for postoperative cardiac surgery patients: A qualitative study. Intensive & Critical Care Nursing, 88, 104001. https://doi.org/10.1016/j.iccn.2025.104001 ▫️ Blain-Moraes, S., Sarwal, A., & Hemphill, J. C. (2025). Chapter 15 - The Curing Coma Campaign: A platform for advancing science and clinical care worldwide. In P. W. Kaplan & R. G. Geocadin (Eds.), Handbook of Clinical Neurology (Vol. 207, pp. 265–280). Elsevier. https://doi.org/10.1016/B978-0-443-13408-1.00005-1 ▫️ Kifell, J., Burns, K. E. A., Duong, J., Fiest, K., Gagné, C., Gélinas, C., Krewulak, K., Price, C., Stephenson, A., Wang, H. T., & Goldfarb, M. (2025). Measuring family engagement in intensive care: Validation of the FAME tool. Journal of Critical Care, 87, 155046. https://doi.org/10.1016/j.jcrc.2025.155046 ▫️ Kifell, J., Slobod, D., Lewis, K. B., & Goldfarb, M. (2025). Direct Observation of Family Engagement Practice in a Cardiovascular Intensive Care Unit. Journal of Patient Experience, 12, 23743735251330464. https://doi.org/10.1177/23743735251330463 ▫️ Krewulak, K. D., Lee, L. A., Strayer, K., Armstrong, J., Baig, N., Brouillette, J., Deemer, K., Jaworska, N., Kissel, K. A., MacDonald, C., Mailhot, T., Rewa, O., Sy, E., Nydahl, P., von Haken, R., Lindroth, H., Liu, K., & Fiest, K. M. (2025). The 2023 World delirium awareness and quality Survey: A Canadian substudy. Intensive and Critical Care Nursing, 88, 103980. https://doi.org/10.1016/j.iccn.2025.103980 ▫️ Mailhot, T., Crump, L., Clausen, C., Valentine-Joannette, T., Bouaouina, Z., Leblanc, M.-E., Bitzas, V., Khetir, I., & Lavoie, P. (2025). Nurse-perceived barriers and facilitators influencing optimal delirium care in acute care patients: Findings from the INVOLVE_RN study on barriers and facilitators. Geriatric Nursing, 63, 76–84. https://doi.org/10.1016/j.gerinurse.2025.03.023 ▫️ Racine, E., Ouimet, F., Gutierrez Rojas, R. G., Clermont, M.-J., & Fournier, A. (2025). Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents. Health Care Transitions, 3, 100095. https://doi.org/10.1016/j.hctj.2025.100095 ▫️ Tapp, D., Bravo, G., Filion, C., Couture, V., Dupéré, S., Beaulieu, M., Chouinard, A., Roos, P., Gagnon, M.-P., Bérubé, A., & Plaisance, A. (2025). Individual characteristics influencing the general population’s level of knowledge of end-of-life practices: a cross-sectional study. Palliative Care and Social Practice. https://doi.org/10.1177/26323524241312922 | La qualité de vie des PPA | Les articles regroupés sous cette thématique concernent l’évaluation de la qualité de vie des PPA à l’aide d’indicateurs liés à leur bien-être (p. ex : santé mentale, stress, isolement social, fardeau). Les articles se penchant sur les besoins des PPA pour améliorer leur qualité de vie y sont également inclus. | | ▫️ Boatswain-Kyte, A., Brotman, S., Hanley, J., & DeJean, B. (2025). Resilience Amidst Adversity: Experiences of Black Older Adults During the COVID-19 Pandemic. The Gerontologist, gnaf015. https://doi.org/10.1093/geront/gnaf015 ▫️ Grandisson, M., Chrétien-Vincent, M., Pratte, G., Fauteux, C., Marcotte, J., Jasmin, E., Milot, É., & Bergeron, J. (2025). Evaluating a Family Capacity-Building Service: Are We Doing More Good Than Harm? Canadian Journal of Occupational Therapy. Revue Canadienne D’ergotherapie, 84174251323729. https://doi.org/10.1177/00084174251323729 ▫️ O’Rourke, H. M., Swindle, J., Baxter, P., Peacock, S., Thompson, G., Ghosh, S., Chacinski, D., Holroyd-Leduc, J., Dubé, V., & Duggleby, W. (2025). Effectiveness of My Tools for Care-in Care: A Pragmatic Randomized Controlled Trial. Journal of the American Medical Directors Association, 26(4). https://doi.org/10.1016/j.jamda.2025.105484 ▫️ Rennick, J. E., Dougherty, G., Dryden-Palmer, K., Campbell-Yeo, M., Knox, A. M., Chambers, C. T., Stack, D. M., Treherne, S., & Stremler, R. (2025). The Caring Intensively Study: Three-Year Follow-Up Findings From a Mixed Methods Study of Children’s Psychological and Behavioral Responses After PICU Hospitalization. Pediatric Critical Care Medicine, 10.1097/PCC.0000000000003701. https://doi.org/10.1097/PCC.0000000000003701 | La nagivation des soins et services | Les articles regroupés dans cette thématique concernent le processus de navigation, d’orientation, de coordination, de soutien et de défense des droits dans l’accès aux ressources du RSSS, généralement pour la personne aidée. | | ▫️ Abouzeid, N., Rivard, M., Jacques, C., Mello, C., Parent-Poisson, N., Hérault, É., & Saulnier, G. (2025). Families’, practitioners’, and researchers’ experience in the trajectory for the diagnostic evaluation of developmental disorders in young children. Research in Developmental Disabilities, 158, 104918. https://doi.org/10.1016/j.ridd.2025.104918 ▫️ Carrier, J., Lugasi, T., Labonté, N., Provost, C., Saragosti, A., Longpré, C., Koukoui, B., Régnier-Trudeau, É., Sultan, S., Coltin, H., Perreault, S., Bonanno, M., & Desjardins, L. (2025). Targeted Transition Readiness Workshops for Pediatric Brain Tumor Survivors: Feasibility, Acceptability, and Preliminary Effects. Current Oncology, 32(1), 34. https://doi.org/10.3390/curroncol32010034 | L'expérience relationnelle des PPA | Les articles regroupés sous cette thématique étudient les aspects relationnels de la proche aidance. Ils s’intéressent à l’impact des activités de soutien sur les relations entre les membres de la dyade, ainsi que sur celles entre les différent·e·s proches qui composent le réseau de soutien. | | Pour connaître les étapes méthodologiques d'élaboration de la veille scientifique, consultez la méthodologie. | 
L’Observatoire québécois de la proche aidance est un carrefour de production, de partage et de transfert de connaissances fiables, essentielles et pertinentes pour faire connaître et reconnaître la proche aidance afin de mieux soutenir l’ensemble des personnes concernées. Le mandat pour le développement, l’organisation et le soutien administratif de l’Observatoire a été confié au CIUSSS du Centre-Ouest-de-l'île-de-Montréal. Suivez-nous sur Facebook et LinkedIn ! 
info@observatoireprocheaidance.ca | Caregiver involvement in care and service delivery | This theme refers to the involvement of family members, friends or other significant individuals in the care and support of service users within the health and social services system. It includes caregiver participation in care, services and decision-making; communication and collaboration between caregivers and professionals; specialized training to support caregivers in their role; and systematic consideration of their needs. | | ▫️ Abdallah, J. P., Morel, S. B. A., Soboleva, N., Quan, J., Price, C., & Goldfarb, M. (2025). A digital tool to improve family engagement in acute care: The NGAGE randomized pilot feasibility trial. CJC Open. https://doi.org/10.1016/j.cjco.2025.03.007 ▫️ Azimzadeh, D., Lapierre, A., Bouaouina, Z., Williamson, D., Mailhot, T., & Arbour, C. (2025). ICU nurses’ perceptions on family involvement in delirium care for postoperative cardiac surgery patients: A qualitative study. Intensive & Critical Care Nursing, 88, 104001. https://doi.org/10.1016/j.iccn.2025.104001 ▫️ Blain-Moraes, S., Sarwal, A., & Hemphill, J. C. (2025). Chapter 15 - The Curing Coma Campaign: A platform for advancing science and clinical care worldwide. In P. W. Kaplan & R. G. Geocadin (Eds.), Handbook of Clinical Neurology (Vol. 207, pp. 265–280). Elsevier. https://doi.org/10.1016/B978-0-443-13408-1.00005-1 ▫️ Kifell, J., Burns, K. E. A., Duong, J., Fiest, K., Gagné, C., Gélinas, C., Krewulak, K., Price, C., Stephenson, A., Wang, H. T., & Goldfarb, M. (2025). Measuring family engagement in intensive care: Validation of the FAME tool. Journal of Critical Care, 87, 155046. https://doi.org/10.1016/j.jcrc.2025.155046 ▫️ Kifell, J., Slobod, D., Lewis, K. B., & Goldfarb, M. (2025). Direct Observation of Family Engagement Practice in a Cardiovascular Intensive Care Unit. Journal of Patient Experience, 12, 23743735251330464. https://doi.org/10.1177/23743735251330463 ▫️ Krewulak, K. D., Lee, L. A., Strayer, K., Armstrong, J., Baig, N., Brouillette, J., Deemer, K., Jaworska, N., Kissel, K. A., MacDonald, C., Mailhot, T., Rewa, O., Sy, E., Nydahl, P., von Haken, R., Lindroth, H., Liu, K., & Fiest, K. M. (2025). The 2023 World delirium awareness and quality Survey: A Canadian substudy. Intensive and Critical Care Nursing, 88, 103980. https://doi.org/10.1016/j.iccn.2025.103980 ▫️ Mailhot, T., Crump, L., Clausen, C., Valentine-Joannette, T., Bouaouina, Z., Leblanc, M.-E., Bitzas, V., Khetir, I., & Lavoie, P. (2025). Nurse-perceived barriers and facilitators influencing optimal delirium care in acute care patients: Findings from the INVOLVE_RN study on barriers and facilitators. Geriatric Nursing, 63, 76–84. https://doi.org/10.1016/j.gerinurse.2025.03.023 ▫️ Racine, E., Ouimet, F., Gutierrez Rojas, R. G., Clermont, M.-J., & Fournier, A. (2025). Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents. Health Care Transitions, 3, 100095. https://doi.org/10.1016/j.hctj.2025.100095 ▫️ Tapp, D., Bravo, G., Filion, C., Couture, V., Dupéré, S., Beaulieu, M., Chouinard, A., Roos, P., Gagnon, M.-P., Bérubé, A., & Plaisance, A. (2025). Individual characteristics influencing the general population’s level of knowledge of end-of-life practices: a cross-sectional study. Palliative Care and Social Practice. https://doi.org/10.1177/26323524241312922 | Caregivers’ quality of life | The articles included under this theme assess the quality of life of caregivers using indicators related to the well-being of this group (e.g. mental health, stress, social isolation, burden). Articles looking at the needs of caregivers in order to improve their quality of life are also included. | | ▫️ Boatswain-Kyte, A., Brotman, S., Hanley, J., & DeJean, B. (2025). Resilience Amidst Adversity: Experiences of Black Older Adults During the COVID-19 Pandemic. The Gerontologist, gnaf015. https://doi.org/10.1093/geront/gnaf015 ▫️ Grandisson, M., Chrétien-Vincent, M., Pratte, G., Fauteux, C., Marcotte, J., Jasmin, E., Milot, É., & Bergeron, J. (2025). Evaluating a Family Capacity-Building Service: Are We Doing More Good Than Harm? Canadian Journal of Occupational Therapy. Revue Canadienne D’ergotherapie, 84174251323729. https://doi.org/10.1177/00084174251323729 ▫️ O’Rourke, H. M., Swindle, J., Baxter, P., Peacock, S., Thompson, G., Ghosh, S., Chacinski, D., Holroyd-Leduc, J., Dubé, V., & Duggleby, W. (2025). Effectiveness of My Tools for Care-in Care: A Pragmatic Randomized Controlled Trial. Journal of the American Medical Directors Association, 26(4). https://doi.org/10.1016/j.jamda.2025.105484 ▫️ Rennick, J. E., Dougherty, G., Dryden-Palmer, K., Campbell-Yeo, M., Knox, A. M., Chambers, C. T., Stack, D. M., Treherne, S., & Stremler, R. (2025). The Caring Intensively Study: Three-Year Follow-Up Findings From a Mixed Methods Study of Children’s Psychological and Behavioral Responses After PICU Hospitalization. Pediatric Critical Care Medicine, 10.1097/PCC.0000000000003701. https://doi.org/10.1097/PCC.0000000000003701 | Navigating care and services | A caregiver's navigation of care and services refers to the process of guiding, coordinating, supporting, and advocating for the health and social services network's resources, usually for the care receiver. | | ▫️ Abouzeid, N., Rivard, M., Jacques, C., Mello, C., Parent-Poisson, N., Hérault, É., & Saulnier, G. (2025). Families’, practitioners’, and researchers’ experience in the trajectory for the diagnostic evaluation of developmental disorders in young children. Research in Developmental Disabilities, 158, 104918. https://doi.org/10.1016/j.ridd.2025.104918 ▫️ Carrier, J., Lugasi, T., Labonté, N., Provost, C., Saragosti, A., Longpré, C., Koukoui, B., Régnier-Trudeau, É., Sultan, S., Coltin, H., Perreault, S., Bonanno, M., & Desjardins, L. (2025). Targeted Transition Readiness Workshops for Pediatric Brain Tumor Survivors: Feasibility, Acceptability, and Preliminary Effects. Current Oncology, 32(1), 34. https://doi.org/10.3390/curroncol32010034 | Caregivers’ relational experience | The articles contained under this theme study the relational aspects of caregiving. They look at the impact of support activities on the relationships maintained between the members of the dyad or on the whole support system deployed within the caregiving relationship. | | To learn more about the methodological steps involved in developing our scientific watch, consult the methodology. |
The Quebec Observatory on Caregiving is a hub for the production, sharing and transfer of reliable, essential and relevant knowledge aimed at raising awareness and fostering the recognition of caregiving, to better support all caregiving stakeholders. The Observatory’s development, coordination and administration has been entrusted to the CIUSSS du Centre-Ouest-de-l'île-de-Montréal. Follow us on Facebook and LinkedIn !
info@observatoireprocheaidance.ca | | | | |
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