«Je dois mettre dans ma tête que c’est pour rendre service» : engagements et contraintes de l’emploi des préposées au soutien à domicile embauchées par le Chèque emploi-service

Le système chèque emploi-service (CES) est un dispositif qui permet l’allocation aux usagers et usagères de services de soutien à domicile une enveloppe d’heures de services qu’ils et elles peuvent utiliser afin d’embaucher les préposées aux services de soutien à domicile (PSD) de leur choix. En prenant pour point de départ la diversité des expériences d’emploi de quatorze travailleuses interviewées individuellement, ce mémoire de maitrise s’articule autour de deux pôles principaux : 1) une revue historique des enjeux qui ont contribué au façonnement du système d’allocation directe CES et aux conditions d’emploi qui lui sont liées, et 2) une analyse des dynamiques qui contribuent à l’informalisation du secteur des services de soutien à domicile au Québec. Ce projet permet d’alimenter notre compréhension de la néolibéralisation de l’État social, à la fois dans son rôle de prestataire de soins de santé et de services sociaux, que de régulateur des marchés du travail.The « Cheque-Emploi-Service » (CES) system is a cash-for-care program that allows home care service users to be allocated hours of service that they can use to choose and hire home care support workers (PSD). Taking as a point of departure the diversity of experiences of fourteen women workers interviewed individually, this Master’s thesis is articulated around two main poles: 1) a historical review of the issues that have shape the direct fundings in Quebec and its related employment conditions, and 2) an analysis of the dynamics that contribute to the informalization of the home support service sector. This project feeds our understanding of the neoliberalization of the welfare state both as a provider of health care and social services, as an employer, and as a regulator of labour markets

Global Retinoblastoma Presentation and Analysis by National Income Level.

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

The global retinoblastoma outcome study : a prospective, cluster-based analysis of 4064 patients from 149 countries

DATA SHARING : The study data will become available online once all analyses are complete.BACKGROUND : Retinoblastoma is the most common intraocular cancer worldwide. There is some evidence to suggest that major differences exist in treatment outcomes for children with retinoblastoma from different regions, but these differences have not been assessed on a global scale. We aimed to report 3-year outcomes for children with retinoblastoma globally and to investigate factors associated with survival. METHODS : We did a prospective cluster-based analysis of treatment-naive patients with retinoblastoma who were diagnosed between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Patients were recruited from 260 specialised treatment centres worldwide. Data were obtained from participating centres on primary and additional treatments, duration of follow-up, metastasis, eye globe salvage, and survival outcome. We analysed time to death and time to enucleation with Cox regression models. FINDINGS : The cohort included 4064 children from 149 countries. The median age at diagnosis was 23·2 months (IQR 11·0–36·5). Extraocular tumour spread (cT4 of the cTNMH classification) at diagnosis was reported in five (0·8%) of 636 children from high-income countries, 55 (5·4%) of 1027 children from upper-middle-income countries, 342 (19·7%) of 1738 children from lower-middle-income countries, and 196 (42·9%) of 457 children from low-income countries. Enucleation surgery was available for all children and intravenous chemotherapy was available for 4014 (98·8%) of 4064 children. The 3-year survival rate was 99·5% (95% CI 98·8–100·0) for children from high-income countries, 91·2% (89·5–93·0) for children from upper-middle-income countries, 80·3% (78·3–82·3) for children from lower-middle-income countries, and 57·3% (52·1-63·0) for children from low-income countries. On analysis, independent factors for worse survival were residence in low-income countries compared to high-income countries (hazard ratio 16·67; 95% CI 4·76–50·00), cT4 advanced tumour compared to cT1 (8·98; 4·44–18·18), and older age at diagnosis in children up to 3 years (1·38 per year; 1·23–1·56). For children aged 3–7 years, the mortality risk decreased slightly (p=0·0104 for the change in slope). INTERPRETATION : This study, estimated to include approximately half of all new retinoblastoma cases worldwide in 2017, shows profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries estimated 3-year survival is just over 50%. Although essential treatments are available in nearly all countries, early diagnosis and treatment in low-income countries are key to improving survival outcomes.The Queen Elizabeth Diamond Jubilee Trust and the Wellcome Trust.https://www.thelancet.com/journals/langlo/homeam2023Paediatrics and Child Healt

Le travail de soutien à domicile en zone grise : étude de cas du système d’allocation directe Chèque Emploi-Service

Le système Chèque emploi-service (CES) est un mode de prestation de services de soutien à domicile de type « allocation directe » mis en place au Québec en 1996 afin de répondre aux revendications des personnes en situation de handicap et dont l’usage a depuis été largement étendu, principalement auprès des personnes âgées. Inspiré des différents modèles de type « cash-for-care », le CES permet un plus grand contrôle aux usager.ère.s et une personnalisation de leurs services, mais aussi d’importantes économies à l’État québécois. Notre étude de cas révèle que ces économies reposent entre autres sur le travail gratuit des personnes qui sont embauchées. Trois dynamiques concourent à ce phénomène : 1) la déqualification du secteur des services de soutien à domicile, 2) la dérégulation de la relation d’emploi induite par l’allocation directe, et 3) la succession de compressions budgétaires et de réduction de services. Cet article démontre que la confluence de ces trois dynamiques a pour effet de faire apparaître une « zone grise de l’emploi », c’est-à-dire un espace d’incertitude et d’arbitraire à l’intérieur duquel sont renégociées les conditions de travail et de rémunération. Le travail effectué gratuitement par les travailleuses apparaît alors tributaire des rapports de pouvoir et de dépendance qui se nouent entre elles et les usager.ère.s qui les emploient.The Chèque emploi-service (CES) is a direct funding home care support service program implemented in Quebec in 1996 in response to the demands of people living with disabilities. The use of the CES has since been widely extended, mainly among the elderly. Inspired by various «cash-for-care» models, the CES allows for greater control and personalization of service provision, but also for significant budget savings. Our case study exposes how unpaid labour contributes to the cost-effectiveness of the program. Three dynamics underlie this phenomenon: 1) the deskilling of the home care services sector, 2) the deregulation of the employment relationship induced by direct funding, and 3) successive budget cuts and service reductions. We show that the confluence of these three dynamics results in the emergence of a «grey zone», i.e. a space of uncertainty and arbitrariness within which the working and remuneration conditions are subject to renegotiation. Unpaid labour is then tied to the power and dependence balance between users and workers.Inspirado en los diferentes modelos del tipo «cash-for-care» implantado a partir de los años 1980 en la mayoría de los países del OCDE, el funcionamiento del Cheque empleo-servicio (CES) rompe con el modelo tradicional del trabajo: la responsabilidad y el poder de contratación, de formación y de despido son transferidos a los usuarios del servicio. Los servicios son personalizados y notamos una importante reducción de costos gracias a la disminución de la masa salarial. Este artículo trata sobre los mecanismos institucionales subyacentes, analizando tres dinámicas observadas: 1) la precarización del sector de los servicios a domicilio, operados por la introducción y el subsidio directo, 2) la desregulación inducida por la complejidad de la relación de trabajo, y 3) las reducciones presupuestarias que se traducen en un informe sobre PSD en cuanto a la responsabilidad en torno a los cuidados y servicios. Concretamente, demostraremos que la confluencia entre estas dinámicas tiene como efecto el surgimiento de una «zona gris», que consiste en un espacio de incertidumbre y de arbitrariedad, en un ámbito donde son renegociadas las condiciones de trabajo y la remuneración de PSD. El CES aparece entonces como un catalizador de una reconfiguración de relaciones de poder y de dependencia que se establecen entre los usuarios y las trabajadoras, a través de las cuales se determinan las condiciones de trabajo. Además, nuestra encuesta–trabajo de campo, revela que la remuneración percibida por las trabajadoras, no refleja totalmente las horas realmente trabajadas, sugiriendo que la reducción de costos se sostiene en el trabajo gratuito de las personas contratadas

Déclinaisons de la solitude : le recours aux temporalités chez les conjointes aidantes âgées

Cet article relate comment s’exprime et se vit la solitude de personnes âgées qui vivent en couple avec une personne qui a besoin d’aide ou de soutien au quotidien ainsi que la manière dont les temporalités sont mobilisées lorsque cette solitude est évoquée. Relativement peu nommée au cours des entretiens, les analyses montrent que la solitude se retrouve pourtant dans de nombreux « plis » de l’existence de ces conjointes, et que l’expérience de la proche aidance multiplie les conditions de sa production. Pour supporter un présent lourd, de plus en plus dense, un présent imparfait, ces conjointes s’appuient massivement sur l’évocation d’un passé conjugal et d’une continuité identitaire. Quant au futur, synonyme de dégradation, il s’appréhende de manière complexe puisque, même épuisées, elles savent que c’est la disparition de l’autre qui les attend ainsi qu’une « nouvelle » vie dans laquelle elles auront à se reconstruire, seules.This article describes how the loneliness of older people who live with their spouse who needs help or support on a daily basis is expressed and how temporalities are mobilized when this loneliness is evoked. Even though rarely mentioned explicitly during the interviews, the analyses show that loneliness is found in many “folds” of the existence of these spouses, and that the experience of caregiving multiplies the conditions of its manifestation. To sustain a daily caregiving situation, which becomes more and more intense in the present, these spouses rely heavily on the evocation of a conjugal past and a continuity of identity. As for the future, it is difficult to apprehend because, even when exhausted, they know that it is the disappearance of the other who awaits them and a “new” life in which they will have to rebuild themselves, alone.Este artículo describe cómo se expresa y se vive la soledad en los adultos mayores que viven en pareja, cuando una de las personas requiere ayuda o apoyo en la vida cotidiana, así como la forma como son movilizadas las temporalidades cuando se menciona esta soledad. Relativamente poco nombrada durante las entrevistas, los análisis muestran que la soledad se encuentra sin embargo en muchos “pliegues” de la existencia de estos cónyuges, y que la experiencia de la ayuda cercana multiplica las condiciones de su producción. Para soportar un presente pesado, cada vez más denso, un presente imperfecto, estos cónyuges se apoyan ampliamente en la evocación del pasado conyugal y de una continuidad identitaria. En cuanto al futuro, sinónimo de degradación, se aborda de forma compleja puesto que, incluso agotados, saben que es la desaparición del otro lo que les espera, así como una “nueva” vida en la que tendrán que reconstruirse solos