| Autor: |
Bravo G; Department of Community Health Sciences, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada.; Research Centre on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l'Estrie - Centre hospitalier universitaire de Sherbrooke, Sherbrooke, Quebec, Canada., Arcand M; Research Centre on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l'Estrie - Centre hospitalier universitaire de Sherbrooke, Sherbrooke, Quebec, Canada.; Department of Family and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada., Wilchesky M; Department of Family Medicine and Division of Geriatric Medicine, McGill University, Montreal, Quebec, Canada.; Lady Davis Institute - Jewish General Hospital and Donald Berman Maimonides Centre for Research in Aging, Montreal, Quebec, Canada., Verreault R; Faculty of Medecine, Université Laval, Quebec, Quebec, Canada.; Quebec Centre of Excellence on Aging, Quebec, Quebec, Canada., Bilodeau C; Research Centre on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l'Estrie - Centre hospitalier universitaire de Sherbrooke, Sherbrooke, Quebec, Canada., Trottier L; Research Centre on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l'Estrie - Centre hospitalier universitaire de Sherbrooke, Sherbrooke, Quebec, Canada. |
| Abstrakt: |
Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory. |
