23 research outputs found
«Je dois mettre dans ma tĂȘte que câest pour rendre service» : engagements et contraintes de lâemploi des prĂ©posĂ©es au soutien Ă domicile embauchĂ©es par le ChĂšque emploi-service
Le systĂšme chĂšque emploi-service (CES) est un dispositif qui permet lâallocation aux usagers et usagĂšres de services de soutien Ă domicile une enveloppe dâheures de services quâils et elles peuvent utiliser afin dâembaucher les prĂ©posĂ©es aux services de soutien Ă domicile (PSD) de leur choix. En prenant pour point de dĂ©part la diversitĂ© des expĂ©riences dâemploi de quatorze travailleuses interviewĂ©es individuellement, ce mĂ©moire de maitrise sâarticule autour de deux pĂŽles principaux : 1) une revue historique des enjeux qui ont contribuĂ© au façonnement du systĂšme dâallocation directe CES et aux conditions dâemploi qui lui sont liĂ©es, et 2) une analyse des dynamiques qui contribuent Ă lâinformalisation du secteur des services de soutien Ă domicile au QuĂ©bec. Ce projet permet dâalimenter notre comprĂ©hension de la nĂ©olibĂ©ralisation de lâĂtat social, Ă la fois dans son rĂŽle de prestataire de soins de santĂ© et de services sociaux, que de rĂ©gulateur des marchĂ©s 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 Masterâs 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 (nâ=â3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (nâ=â2638 [62.8%]), followed by strabismus (nâ=â429 [10.2%]) and proptosis (nâ=â309 [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 11·0â36·5). 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 98·8â100·0) for children from high-income countries, 91·2% (89·5â93·0) for children from upper-middle-income countries, 80·3% (78·3â82·3) 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 4·76â50·00), cT4 advanced tumour compared to cT1 (8·98; 4·44â18·18), and older age at diagnosis in children up to 3 years (1·38 per year; 1·23â1·56). For children aged 3â7 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 Ă domicile en zone grise : Ă©tude de cas du systĂšme dâallocation directe ChĂšque Emploi-Service
Le systĂšme ChĂšque 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
rĂ©pondre aux revendications des personnes en situation de handicap et dont lâusage a depuis
été largement étendu, principalement auprÚs des personnes ùgées. Inspiré des différents
modÚles de type « cash-for-care », le CES permet un plus grand contrÎle aux usager.Úre.s et
une personnalisation de leurs services, mais aussi dâimportantes Ă©conomies Ă lâĂtat
québécois. Notre étude de cas révÚle que ces économies reposent entre autres sur le travail
gratuit des personnes qui sont embauchées. Trois dynamiques concourent à ce phénomÚne : 1)
la déqualification du secteur des services de soutien à domicile, 2) la dérégulation de la
relation dâemploi induite par lâallocation 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 apparaĂźtre une « zone grise de lâemploi », câest-Ă -dire un
espace dâincertitude et dâarbitraire Ă lâintĂ©rieur duquel sont renĂ©gociĂ©es les conditions de
travail et de rémunération. Le travail effectué gratuitement par les travailleuses apparaßt
alors tributaire des rapports de pouvoir et de dépendance qui se nouent entre elles et les
usager.Ăšre.s qui les emploient.The ChĂšque 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 mayorĂa de los paĂses del OCDE, el funcionamiento del Cheque
empleo-servicio (CES) rompe con el modelo tradicional del trabajo: la responsabilidad y el
poder de contrataciĂłn, de formaciĂłn y de despido son transferidos a los usuarios del
servicio. Los servicios son personalizados y notamos una importante reducciĂłn de costos
gracias a la disminuciĂłn de la masa salarial. Este artĂculo trata sobre los mecanismos
institucionales subyacentes, analizando tres dinĂĄmicas observadas: 1) la precarizaciĂłn del
sector de los servicios a domicilio, operados por la introducciĂłn y el subsidio directo, 2)
la desregulaciĂłn inducida por la complejidad de la relaciĂłn 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 dinåmicas tiene como efecto el surgimiento de una «zona gris», que consiste en un
espacio de incertidumbre y de arbitrariedad, en un ĂĄmbito donde son renegociadas las
condiciones de trabajo y la remuneraciĂłn de PSD. El CES aparece entonces como un catalizador
de una reconfiguraciĂłn 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. AdemĂĄs, nuestra encuestaâtrabajo de campo, revela que la remuneraciĂłn percibida por
las trabajadoras, no refleja totalmente las horas realmente trabajadas, sugiriendo que la
reducciĂłn de costos se sostiene en el trabajo gratuito de las personas
contratadas
Déclinaisons de la solitude : le recours aux temporalités chez les conjointes aidantes ùgées
Cet article relate comment sâexprime et se vit la solitude de personnes ĂągĂ©es qui vivent en couple avec une personne qui a besoin dâaide ou de soutien au quotidien ainsi que la maniĂšre dont les temporalitĂ©s sont mobilisĂ©es lorsque cette solitude est Ă©voquĂ©e. Relativement peu nommĂ©e au cours des entretiens, les analyses montrent que la solitude se retrouve pourtant dans de nombreux « plis » de lâexistence de ces conjointes, et que lâexpĂ©rience de la proche aidance multiplie les conditions de sa production. Pour supporter un prĂ©sent lourd, de plus en plus dense, un prĂ©sent imparfait, ces conjointes sâappuient massivement sur lâĂ©vocation dâun passĂ© conjugal et dâune continuitĂ© identitaire. Quant au futur, synonyme de dĂ©gradation, il sâapprĂ©hende de maniĂšre complexe puisque, mĂȘme Ă©puisĂ©es, elles savent que câest la disparition de lâautre qui les attend ainsi quâune « nouvelle » vie dans laquelle elles auront Ă 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 âfoldsâ 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 ânewâ life in which they will have to rebuild themselves, alone.Este artĂculo describe cĂłmo 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, asĂ como la forma como son movilizadas las temporalidades cuando se menciona esta soledad. Relativamente poco nombrada durante las entrevistas, los anĂĄlisis muestran que la soledad se encuentra sin embargo en muchos âplieguesâ de la existencia de estos cĂłnyuges, y que la experiencia de la ayuda cercana multiplica las condiciones de su producciĂłn. Para soportar un presente pesado, cada vez mĂĄs denso, un presente imperfecto, estos cĂłnyuges se apoyan ampliamente en la evocaciĂłn del pasado conyugal y de una continuidad identitaria. En cuanto al futuro, sinĂłnimo de degradaciĂłn, se aborda de forma compleja puesto que, incluso agotados, saben que es la desapariciĂłn del otro lo que les espera, asĂ como una ânuevaâ vida en la que tendrĂĄn que reconstruirse solos