L'expérience des soins et des services des PPA | Les articles regroupés sous cette thématique abordent l’interaction des PPA avec les systèmes ou les réseaux de soins et de services, pour la plupart canadien. Ils mettent en lumière la perspective des PPA, des professionnel·le·s ou des personnes aidées. Cette thématique se découpe en deux sous-thématiques : la navigation des soins et des services et la prise de décision. | | La navigation des soins et des services Les articles regroupés dans cette sous-thématique concernent le processus de navigation, d’orientation, de coordination, de soutien et de défense des droits dans l’accès aux ressources du réseau de la santé et des services sociaux, généralement pour la personne aidée. ▫️ Arsenault-Lapierre, G., Rodriguez Duarte, M. A., Rojas-Rozo, L., Jeon, Y.-H., Hevink, M., Ciułkowicz, M., Szczesniak, D., Rait, G., Robinson, L., Wilcock, J., Poole, M., McAiney, C., Doucet, S., Luke, A., Reid, A. E., & Vedel, I. (2024). Exploring perceived helpfulness of health services in men and women with dementia and care partners: A cross-sectional analysis. Dementia, 14713012241289472. https://doi.org/10.1177/14713012241289471 ▫️ Cetin-Sahin, D., Ilali, M., Lemay-Compagnat, A., Arsenault-Lapierre, G., Bolster-Foucault, C., Quesnel-Vallée, A., & Vedel, I. (2024). A comprehensive experience-based framework of actionable priorities to enhance Canada’s health and social care system: discussions with older persons, clinicians, managers, and decision-makers using nominal group technique. BMC Geriatrics, 24(1), 976. https://doi.org/10.1186/s12877-024-05561-6 ▫️ Rivard, M., Chatenoud, C., (Caya) Chiu, C.-Y., Aldersey, H., Coulombe, P., Morin, M., Mello, C., & Magnan, C. (2024). From Early Behavioral Intervention to School: A Systematic Evaluation of Parents’ Perspectives on the Quality of the Autism Services During the Transition to Kindergarten. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06594-x ▫️ Serrano, D., Sussman, T., Kaasalanien, S., Wickson-Griffiths, A., Thompson, G., Hunter, P. V., MacIntosh, H. B., & Brazil, K. (2024). A Parallel Process of Staff–Family Distress in Long-Term Care: A Challenge to Collaboration. SAGE Open Nursing, 10, 23779608241306404. https://doi.org/10.1177/23779608241306403 | La prise de décision Les articles regroupés dans cette sous-thématique portent sur le processus de décision des PPA concernant les soins et les services à fournir à la personne qu’elles soutiennent. Cela inclut la planification des soins (p. ex. : soins de fin de vie), le choix des traitements médicaux, l’organisation des services d’aide à domicile, le choix du milieu de résidence ou du milieu de soins et services ainsi que d’autres aspects de la vie quotidienne. ▫️ Asmaou Bouba, D., Gomes Souza, L., Dofara, S. G., Guay-Bélanger, S., Gadio, S., Mochcovitch, D., Paquette, J.-S., Izumi, S. (Seiko), Archambault, P., Totten, A. M., Rivest, L.-P., & Légaré, F. (2024). Long-Term Effects of Individual-Focused and Team-Based Training on Health Professionals’ Intention to Have Serious Illness Conversations: A Cluster Randomised Trial. Journal of CME, 13(1), 2420475. https://doi.org/10.1080/28338073.2024.2420475 ▫️ Funk, L. M., Mackenzie, C. S., Rapaport, L.-E., Cherba, M., Cohen, S. R., Krawczyk, M., Rounce, A., & Stajduhar, K. I. (2024). How the COVID-19 pandemic shaped Canadians’ preferences for setting of dying: Comparison of two panel surveys. Healthcare Management Forum, 08404704241297037. https://doi.org/10.1177/08404704241297037 ▫️ Lemay-Compagnat, A., Cetin-Sahin, D., Rojas-Rozo, L., Arsenault-Lapierre, G., Couturier, Y., Bergman, H., Vedel, I., & COVID-ROSA Research Team. (2024). Formulating recommendations to improve care for persons living with dementia: deliberative dialogues with multiple stakeholders in the province of Quebec, Canada. BMC Health Services Research, 24(1), 1461. https://doi.org/10.1186/s12913-024-11565-0 ▫️ Rivard, M., Grenier-Martin, J., Mello, C., Sanchez, C., Morin, D., Forget, J., Lefebvre, C., Mestari, Z., & Duchaine, J. (2024). Implementing a Positive Behavior Support Program for Young Children with Autism in Public Agencies: A Social Validity Evaluation from Parents, Practitioners, and Administrators. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06590-1 | La qualité des vies 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. | | ▫️ Chertkow, H., Phillips, N., Rockwood, K., Anderson, N., Andrew, M. K., Bartha, R., Beaudoin, C., Bélanger, N., Bellec, P., Belleville, S., Bergman, H., Best, S., Bethell, J., Bherer, L., Black, S., Borrie, M., Camicioli, R., Carrier, J., Cashman, N., et coll. (2024). Impact of a national dementia research consortium: The Canadian Consortium on Neurodegeneration in Aging (CCNA). Journal of Alzheimer’s Disease, 102(3), 535–561. https://doi.org/10.1177/13872877241290990 ▫️ Duong, J., Wang, G., Lean, G., Slobod, D., & Goldfarb, M. (2024). Family-centered interventions and patient outcomes in the adult intensive care unit: A systematic review of randomized controlled trials. Journal of Critical Care, 83, 154829. https://doi.org/10.1016/j.jcrc.2024.154829 ▫️ Mestari, Z., Rivard, M., & Mello, C. (2024). Learning from educators: Implementation of a positive behavior support program targeting challenging behavior in children with autism. Evaluation and Program Planning, 107, 102491. https://doi.org/10.1016/j.evalprogplan.2024.102491 ▫️ Piché, G., Davidson, G., Dunkley-Smith, A., Grant, A., Yates, S., & Maybery, D. (2024). Exploring past research to move forward: a scoping review of aims, outcomes, and recommendations in parental mental illness qualitative research. Frontiers in Public Health, 12. https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2024.1427432 ▫️ Rojas-Rozo, L., Arsenault-Lapierre, G., Dumaresq, D., Trépanier, T., Lea, P., Myers Barnett, K., O’Connor, D., Fernandez Loughlin, R., Miskucza, K., Wighton, M. B., Godard-Sebillotte, C., Gruneir, A., Beuscart, J.-B., Bronskill, S. E., Sourial, N., Smith, E. E., Bethell, J., Vedel, I., The COVID ROSA Research Team, et coll. (2024). Unlocking Engagement: Enhancing Participation in Research with Vulnerable Populations. International Journal of Public Health, 69, 1606705. https://doi.org/10.3389/ijph.2024.1606705 | L'expérience relationnelle des PPA | Les articles regroupés sous cette thématique étudient les aspects relationnels de la proche aidance. Ainsi, ils s’intéressent à l’impact des activités de soutien sur les relations entre les membres de la dyade ou sur les relations entre les différent·e·s proches qui constituent le réseau de soutien. | | ▫️ Kuhlmann, N., Thomas, A., Incio-Serra, N., & Blain-Moraes, S. (2024). Piece of Mind: knowledge translation performances for public engagement on Parkinson’s disease and dementia. Frontiers in Psychology, 15. https://doi.org/10.3389/fpsyg.2024.1439362 | 
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 | Caregivers’ experience of care and services | The articles grouped under this topic address the interaction of caregivers with the care and service network and system, most of which are Canadian. These articles highlight the perspectives of caregivers, professionals, and care receivers. Two sub-themes have been identified in the caregivers’ experience of care and services : Navigating care and services and Decision-making. | | 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. ▫️ Arsenault-Lapierre, G., Rodriguez Duarte, M. A., Rojas-Rozo, L., Jeon, Y.-H., Hevink, M., Ciułkowicz, M., Szczesniak, D., Rait, G., Robinson, L., Wilcock, J., Poole, M., McAiney, C., Doucet, S., Luke, A., Reid, A. E., & Vedel, I. (2024). Exploring perceived helpfulness of health services in men and women with dementia and care partners: A cross-sectional analysis. Dementia, 14713012241289472. https://doi.org/10.1177/14713012241289471 ▫️ Cetin-Sahin, D., Ilali, M., Lemay-Compagnat, A., Arsenault-Lapierre, G., Bolster-Foucault, C., Quesnel-Vallée, A., & Vedel, I. (2024). A comprehensive experience-based framework of actionable priorities to enhance Canada’s health and social care system: discussions with older persons, clinicians, managers, and decision-makers using nominal group technique. BMC Geriatrics, 24(1), 976. https://doi.org/10.1186/s12877-024-05561-6 ▫️ Rivard, M., Chatenoud, C., (Caya) Chiu, C.-Y., Aldersey, H., Coulombe, P., Morin, M., Mello, C., & Magnan, C. (2024). From Early Behavioral Intervention to School: A Systematic Evaluation of Parents’ Perspectives on the Quality of the Autism Services During the Transition to Kindergarten. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06594-x ▫️ Serrano, D., Sussman, T., Kaasalanien, S., Wickson-Griffiths, A., Thompson, G., Hunter, P. V., MacIntosh, H. B., & Brazil, K. (2024). A Parallel Process of Staff–Family Distress in Long-Term Care: A Challenge to Collaboration. SAGE Open Nursing, 10, 23779608241306404. https://doi.org/10.1177/23779608241306403 | Decision-making The articles included under this theme assess the process by which caregivers make decisions about the care and services to be provided to the person they support. This includes care planning (e.g. end-of-life care), the choice of medical treatments, the organization of domestic help services, the choice of residential or care and service environment, and other aspects of daily life. ▫️ Asmaou Bouba, D., Gomes Souza, L., Dofara, S. G., Guay-Bélanger, S., Gadio, S., Mochcovitch, D., Paquette, J.-S., Izumi, S. (Seiko), Archambault, P., Totten, A. M., Rivest, L.-P., & Légaré, F. (2024). Long-Term Effects of Individual-Focused and Team-Based Training on Health Professionals’ Intention to Have Serious Illness Conversations: A Cluster Randomised Trial. Journal of CME, 13(1), 2420475. https://doi.org/10.1080/28338073.2024.2420475 ▫️ Funk, L. M., Mackenzie, C. S., Rapaport, L.-E., Cherba, M., Cohen, S. R., Krawczyk, M., Rounce, A., & Stajduhar, K. I. (2024). How the COVID-19 pandemic shaped Canadians’ preferences for setting of dying: Comparison of two panel surveys. Healthcare Management Forum, 08404704241297037. https://doi.org/10.1177/08404704241297037 ▫️ Lemay-Compagnat, A., Cetin-Sahin, D., Rojas-Rozo, L., Arsenault-Lapierre, G., Couturier, Y., Bergman, H., Vedel, I., & COVID-ROSA Research Team. (2024). Formulating recommendations to improve care for persons living with dementia: deliberative dialogues with multiple stakeholders in the province of Quebec, Canada. BMC Health Services Research, 24(1), 1461. https://doi.org/10.1186/s12913-024-11565-0 ▫️ Rivard, M., Grenier-Martin, J., Mello, C., Sanchez, C., Morin, D., Forget, J., Lefebvre, C., Mestari, Z., & Duchaine, J. (2024). Implementing a Positive Behavior Support Program for Young Children with Autism in Public Agencies: A Social Validity Evaluation from Parents, Practitioners, and Administrators. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06590-1 | 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. | | ▫️ Chertkow, H., Phillips, N., Rockwood, K., Anderson, N., Andrew, M. K., Bartha, R., Beaudoin, C., Bélanger, N., Bellec, P., Belleville, S., Bergman, H., Best, S., Bethell, J., Bherer, L., Black, S., Borrie, M., Camicioli, R., Carrier, J., Cashman, N., and al. (2024). Impact of a national dementia research consortium: The Canadian Consortium on Neurodegeneration in Aging (CCNA). Journal of Alzheimer’s Disease, 102(3), 535–561. https://doi.org/10.1177/13872877241290990 ▫️ Duong, J., Wang, G., Lean, G., Slobod, D., & Goldfarb, M. (2024). Family-centered interventions and patient outcomes in the adult intensive care unit: A systematic review of randomized controlled trials. Journal of Critical Care, 83, 154829. https://doi.org/10.1016/j.jcrc.2024.154829 ▫️ Mestari, Z., Rivard, M., & Mello, C. (2024). Learning from educators: Implementation of a positive behavior support program targeting challenging behavior in children with autism. Evaluation and Program Planning, 107, 102491. https://doi.org/10.1016/j.evalprogplan.2024.102491 ▫️ Piché, G., Davidson, G., Dunkley-Smith, A., Grant, A., Yates, S., & Maybery, D. (2024). Exploring past research to move forward: a scoping review of aims, outcomes, and recommendations in parental mental illness qualitative research. Frontiers in Public Health, 12. https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2024.1427432 ▫️ Rojas-Rozo, L., Arsenault-Lapierre, G., Dumaresq, D., Trépanier, T., Lea, P., Myers Barnett, K., O’Connor, D., Fernandez Loughlin, R., Miskucza, K., Wighton, M. B., Godard-Sebillotte, C., Gruneir, A., Beuscart, J.-B., Bronskill, S. E., Sourial, N., Smith, E. E., Bethell, J., Vedel, I., The COVID ROSA Research Team, and al. (2024). Unlocking Engagement: Enhancing Participation in Research with Vulnerable Populations. International Journal of Public Health, 69, 1606705. https://doi.org/10.3389/ijph.2024.1606705 | 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. | | ▫️ Kuhlmann, N., Thomas, A., Incio-Serra, N., & Blain-Moraes, S. (2024). Piece of Mind: knowledge translation performances for public engagement on Parkinson’s disease and dementia. Frontiers in Psychology, 15. https://doi.org/10.3389/fpsyg.2024.1439362 |
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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