Project Summary
The Aurelia project aims to analyse autonomy regimes[1], which are defined as the organisational procedures for supporting autonomy among people with disabilities or frail older people. These emerge from social discourses, institutionalised norms, specific assistance measures, and the daily practices of carrying out support tasks (objectives 1 and 2). This project conducts a combined comparative analysis on the design of policy instruments (specialized debates, social discourses, and implementation procedures), the specific support practices for autonomy, and the different dimensions in which they are received by the concerned public and informal carers. This project will capture autonomy regimes at the territorial level in conjunction with national scales and individual situations. The Aurelia project develops three objectives: i) analysis of the tensions between norms and practices of long-term care; ii) analysis of the tensions between national, territorial, and individual policies for regulating the provision of long-term care; and iii) a reading of the autonomy regimes through the analytical lens of instrumentation, as the instruments implement specific provisions and organise power relations in a given policy domain (capacities, financial resources, obligations, information, etc.). Specifically, the project focuses on the instruments for assessing autonomy loss, doctrines of rehabilitation, and tools that compensate for autonomy loss. In the case of those instruments, autonomy is simultaneously constructed by representations, scientific knowledge, and especially medical and professional knowledge. These instruments also give rise to the public’s acts of implementation and appropriation – or circumvention, whichever the case may be. The project analyses public discourses insofar as they contribute to defining the content of the notion of autonomy in long-term care policies, to forging policy instruments, and to structuring professional and lay knowledge corpuses that guide both the practices of implementing measures and informal acts of autonomy support that take place at home. Finally, the Aurelia project produces analyses of autonomy as a norm that is located at the intersection between individual expectations and differentiated social orders, which are driven by actors situated at various scales.
The project is based on a pluralistic research methodology that comprises qualitative analyses of discourses, public policies (specifically instruments), interviews with actors involved in deciding on and implementing instruments as well as with informal actors, and recipients of the various measures and autonomy support practices. The quantitative analysis will capture the disparities between territories and characterise the autonomy regimes in specific contexts: equipment, policy implementation and take up, varieties in the modes of care, socio-economic indicators, and the configurations of actors and care practices at the beneficiary level.
The Aurelia project is based on an international and multidisciplinary research consortium. In France, specialists in sociology, political science, geography, demography, law, public health, economics and medicine are organised into five teams: INED, LISE-CNAM CNRS, EHESP, EHESS, and IRES. The members of these different teams have already achieved successful scientific work and are experienced in comparative analysis. The Aurelia consortium’s partner teams in Germany, Canada, Japan, and the United Kingdom are leaders in their fields. Furthermore, productive partnerships have already been tested among the consortium members.
[1] The notion of autonomy regime refers here to all LTC policies which aim to maintain and / or promote the autonomy (the different types of autonomy) of the elderly and people with disabilities; and or who formulate responses to situations of loss of autonomy of these audiences (benefits, services), as well as all the normative injunctions, administrative categories, instruments and systems on which they are based
Project Aims
The autonomy of people hampered by a disability, chronic illness, or functional loss involves individuals and the relatives or professionals who accompany them. It also concerns the institutional or organized players who debate, decide on, and implement support measures in this field. In France, as elsewhere in the world, changes in the relationship with autonomy through social policies are being driven by social factors such as population ageing, the transformation of family structure and of forms of employment, and political and historical factors that promote more or less individualized conceptions of autonomy (Börner, Bothfeld, Giraud, 2017). Changes are also taking place in specific practices of autonomy support. Since the mid-2000s, so-called “autonomy” policies in France have been aimed at people with disabilities and frail older people. In international debates, we speak of “long-term care (LTC) policies”. In France, and often abroad, these policies are still segmented according to the public, the nature of the services, and the functions. The notion of autonomy, in terms of LTC policies, is embodied in institutional and social arrangements. It is also contested and ambivalent, particularly because it tends to make the situation of highly dependent people invisible or even delegitimise it. Within the framework of the Aurelia project, autonomy is grasped through the notion of autonomy regimes, defined as the methods of organizing support for autonomy that result from social discourse, institutionalised norms, and specific assistance measures, as well as from the daily practices of carrying out the tasks of supporting frail older people and people with disabilities. This definition complements the analytical perspective of care regimes by embracing professional practices, family carers, and the recipients of LTC provision (Anttonen, Sipilä, 1996; Bettio, Plantega, 2008). Thus, rather than focusing on an analysis of national autonomy regimes and their variations at the sub-national and individual levels, we define autonomy regimes at the conjunction of specific national, territorial, and individual configurations. In addition, we view them as having partially materialized through the instrumentation process of policy making, which combines operationality and the structuring of power relations in the field (Halpern, Lascoumes, Le Galès, 2007; Lascoumes and le Galès, 2007). We will investigate the territorial resources through a diachronic and synchronic analysis (equipment, services, networks of actors in the field of autonomy, etc.). This will be completed by also analysing the implementation of policy instruments at the territorial level.
The Aurelia project analyses autonomy regimes in five countries: France, Germany, Japan, Canada, and the UK. The project’s three main objectives are defined below.
Objective 1:
Objective 1 of the project focuses on analysing tensions between LTC norms and practices by following three established research traditions. Work on care regimes has produced important comparative research findings on the political, institutional, gender and financing norms of LTC provision (Antonnen, Sipilä, 1997; Bettio, Plantenga, 2008). However, they have so far done little to integrate the involvement of family carers or other informal provision. Similarly, studies have distinguished forms of familialism that refer to the dominant rationale of families investing in tasks that support the autonomy of relatives (Leitner 2003; Saraceno 2010, 2016; Le Bihan, Da Roit, Sopadzhiyan, 2019). Finally, several studies have focused on a number of policy instruments that are of particular importance in the LTC field, including cash-for-care measures (Ungerson, Yeandle 2007; Da Roit, Le Bihan, 2019); devices for assessing degrees of autonomy (Lotteier, Majerus and Moulaert 2017); and the employment and work regimes of paid people (Simonazzi 2009; Devetter, Dussuet and Puissant 2017; Dussuet 2019; Pulignano 2019; Jaehrling 2020; Ledoux and Krupka 2021). The latter three types of work have also focused on the institutional and political norms of LTC policies as well as national
Analysing autonomy regimes at the heart of the Aurelia project is based on three social mechanisms, upon which the research hypotheses are built:
- The representations and normative issues for autonomy that are conveyed by local and community cultures, gender norms, or others, as well as by the LTC practices guided by public discourses that have been established to varying degrees;
- Professional or lay knowledge that operationalise these normative representations of autonomy that also influence LTC practices;
- Frail older people, people with disabilities, family carers, and professionals grappling with their own histories, life trajectories, resources, and local constraints. These people reinterpret in a more or less autonomous way both the collective representations of autonomy and the organized and established systems intended to support their relationships with autonomy. Individuals thus construct a singular relationship with autonomy.
Objective 2:
Objective 2 of the project deals with analysing the tensions between national, territorial, and individual regulations and specific LTC policies and practices. Recent works have systematised research results on the multiscalarity of policy making in the domain of social policies (Kazepov, 2010; Kazepov & Barbaris, 2017; Giraud, Tietze, 2021) or, more specifically, of LTC policies (Giraud, 2017). Research has also focused on the policy’s acceptance by its recipients (Warin, 1999). Beyond strict analyses of implementation, these studies show forms of acceptance and either appropriation or resistance to policy prescriptions expressed in ordinary behaviour (Spire, 2016; Gourgues, Mazeaud, 2018). Furthermore, work has also focused on the acceptance of policy instruments by individuals, beyond strict analyses of implementation, particularly in terms of policies and measures for people with disabilities (Revillard, 2020) and frail older people (Meuret, Campfort, 2017). The combination of a multiscalar perspective with work on the acceptance by the recipients of various measures related to policy making will be an original contribution of the Aurelia project. The analysis will focus on three specific issues:
- Standards and services that are produced at the national and territorial levels by institutional regulations and organized actors (public actors, employer organizations, trade unions, and associations – particularly those for people with disabilities or for carers);
- Territories that have characteristics (facilities, political culture, social networks, etc.) that influence the supply of services, their orientation, and their specific availability to individuals;
- The LTC systems that actually depend not only on measures and instruments available to be mobilised locally by the recipients, but also on how the recipients and their relatives understand and receive these measures; or, alternatively, they have specific resources and can mobilise them in order to adapt or bypass the available schemes and measures; or they can combine themwith informal resources (Kröger, Yeandle, 2013; Le Bihan et al., 2013).
Objective 3:
The third objective is to propose a reading of autonomy regimes through the analytical prism of their relationships with instrumentation. Following the analytical framework in this field, we believe that policy instruments are “technical and social devices” (Lascoumes, Legalès, 2007, p.4) that aim to operationalise qualitative objectives and give them materiality. These instruments are also the “concrete realization of a precise conception of state/society relations” (Ibid.). The instruments are based on specific action principles. From obligation/prohibition, to capacity building, information, financial incentives or direct provision, they induce very specific relationships not only to autonomy between carers and supported people, but also among each other, including professionals and lay people. Some instruments focus on the decision-making autonomy of people (cash-for-care instruments, for example), others on their autonomy of implementation (especially of carers when they are mobilised). Some still focus more on the positive autonomy of individuals (instruments that aim to increase or preserve the capacities of carers or those being cared for), while others such as direct provision of services tend to satisfy short-term autonomy, which pays little attention to the decision-making autonomy of people. We hypothesise that we will be able to develop a comparative analytical grid of the specific configurations constituting the autonomy regimes in different countries, specifically by basing it on these LTC instruments and their varying degrees of institutionalisation and the resources that both professional and non-professional actors in the field dedicate to diverting, bypassing, or fulfilling the services or other available instruments. From this point of view, our analysis of autonomy regimes integrates the formal norms (i.e., the instruments) with the ways of understanding these norms as they are disseminated by professionals and laypersons, by social discourse and knowledge, as well as by cultural norms, or in terms of individual resources or practices (Giraud, et al., 2021).
References:
Anttonen A., Sipilä J. 1996. European Social Care Services: Is It Possible To Identify Models ? Journal of European Social Policy, 6 (2) : 87‑100.
Bettio F., Plantenga J. 2004. Comparing Care Regimes in Europe. Feminist Economics, 10 (1) : 85‑113.
Börner S., Bothfeld S., Giraud O. 2017. Editorial: Sozialstaatlichkeit und Autonomie: Historische, soziologische und wohlfahrtsstaatstheoretische Perspektiven. Zeitschrift für Sozialreform, 63 (3) : 333‑353.
Da Roit B., Le Bihan B. 2019. Cash for long‐term care: Policy debates, visions, and designs on the move. Social Policy & Administration, 53 (4) : 519‑536.
Devetter F.-X., Dussuet A., Puissant E. 2017. Pourquoi les aides à domicile sont-elles davantage rémunérées dans certains départements ? Revue d’Économie Régionale & Urbaine, Février (2) : 239‑270.
Dussuet A. 2019. Travailleur.se.s du care. Les zones grises des relations de travail et d’emploi.
Giraud O. 2017. L’introuvable démocratie du care ? La gouvernance multiscalaire des systèmes d’aide et de soins à domicile des personnes âgées entre néo-familialisme et privatisation: les cas de Hambourg et Edimbourg. Revue européenne des sciences sociales, 55 (1) : 127‑147.
Giraud O., Petiau A., Touahria-Gaillard A., Rist B., Trenta A. 2022. Tensions and polarities in the autonomy of family carers in the context of the COVID-19 pandemic in France. International Journal of Care and Caring, 6 (1‑2) : 141‑156.
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Halpern, C., Lascoumes, P., Le Galès, P., Institut d’études politiques de Paris (dirs.). 2014. L’instrumentation de l’action publique: controverses, résistances, effets. Paris : Sciences Po Les Presses (Domaine Gouvernances).
Jaehrling K. 2020. « Gute Arbeit oder Formalisierung ‚light‘?: ‚Grauzonen‘ der Beschäftigung und neue Intermediäre im Arbeitsmarkt Privathaushalt », DuEPublico: Duisburg-Essen Publications online, University of Duisburg-Essen, Germany.
Kazepov Y. 2010. Rescaling Social Policies towards Multivel Governance in Europe: Some Reflections on Processes at Stake and Actors Involved. Rescaling Social Policies: Towards Multilevel Governance in Europe. Ashgate. Farnham, p. 35‑72.
Kazepov Y., Barberis E. 2017. The territorial dimension of social policies and the new role of cities. In Kennett P., Lendvai-Bainton N. (dirs.). Handbook of European Social Policy. Edward Elgar Publishing.
Kröger, T., Yeandle, S. (dirs.). 2013. Combining paid work and family care: Policies and experiences in international perspective. 1re édition. Bristol University Press.
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Le Bihan B., Da Roit B., Sopadzhiyan A. 2019. The turn to optional familialism through the market: Long‐term care, cash‐for‐care, and caregiving policies in Europe. Social Policy & Administration, 53 (4) : 579‑595.
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Outputs
The Aurelia project aims to have impacts and to launch both direct and indirect spin-offs in various social areas. In particular, linking distinct social spheres to autonomy is one of the key objectives of the project.
In the scientific field, the project aims to create a significant impact in three ways.
Firstly, the project will have a significant impact on the different disciplines mobilised for the project. The Aurelia project will produce new knowledge in the fields of sociology, political science, geography, institutional economics, demography, and law, because it will connect diversified areas of knowledge pertaining to LTC research. This ambitious research will be innovative because it analyses the transformations of policy and policy instruments in the domain of LTC, the cultures and representations of social groups, national and territorial traditions, and the social practices of autonomy captured at the individual level in a multiscalar and comparative perspective both within and between countries.
Secondly, this ambition will be achieved by using a research strategy based on mixed methods (Giraud, Maggetti, 2015). Qualitative analysis of cultural productions (novels and films, in particular), in-depth interviews with those responsible for policy making (institutions, associations, and service providers), and people specifically involved in LTC work (professionals and lay people) will be combined with qualitative analyses of social discourses in the field. These qualitative methodologies will be combined with quantitative analyses that are notably centred on the territories and their diversity (notably: needs, services, equipment, and methods of recourse). Furthermore, taking into account the socio-historical trajectories of the territories will constitute an additional methodological dimension of the intrinsically multiscalar approach taken by the Aurelia project. Finally, the international comparison will also specifically be of a multiscalar nature and combine studies on both EU and non-EU European countries with non-European countries. The diversity of the membership of these national configurations makes it possible to construct a large number of explanatory hypotheses through these national configurations, which are diverse in terms of their welfare state regimes (Esping-Andersen, 1990), social service provisions, cultural traditions, and their public authorities being either centralized or decentralized.
Thirdly and finally, this work is especially ambitious because it goes beyond the field of human and social sciences, especially by mobilizing medical specialists, notably in the field of functional rehabilitation, and allows for interdisciplinary work. In addition to the fact that this interdisciplinarity will provide crucial knowledge to the program, scientific impacts are expected from the cooperation between different disciplines within the humanities, social sciences, and medicine. New knowledge about LTC will be provided by an international comparison of various analyses on medical expertise in the governance of public actions for supporting autonomy loss and on the more individual context of the relationships between medical experts, other professionals (particularly in the field of social support), and laypersons.
These scientific impacts will be promoted in the scientific community through the publication of numerous communications and articles in scientific journals, with citations in French, English, and in the national languages of the countries analysed. The first results will be presented in the form of working papers (posted on the project partners’ websites and on a website dedicated to the project) and in thematic communications at scientific events (in connection with the various tasks). The seminars organized by the consortium will aim in particular to collectively discuss the work and publications in progress. The final results of the research will be presented at the project’s closing day and will be the subject of coordinated and varied scientific production in scientific journals specialized in various disciplines.
In order to promote dialogue between science, research, and society, the Aurelia project will develop partnerships with civil society actors (associations, where appropriate, as well as public and private companies) and local authorities, particularly in the territories that will give rise to in-depth analyses.
Preliminary contacts will be expanded upon and developed, specifically those based on this call for tenders, on following previous research (notably research conducted by APF-France handicap), and those initiated with hospital and university practitioners who are members of learned societies in the medical sciences, such as the French Society of Physical Medicine and Rehabilitation. A large number of researchers who are specialists in the field of LTC and involved in the Aurelia consortium already have links with specialist associations in the field. In the case of France, in addition to APF-France Handicap, these are Spina Bifida, France Alzheimer, and Unafam, among others. In the same way, we will build partnerships with local authorities in France, above all with departmental councils, due to their key role in implementing LTC policies. Others will be municipalities, due to the traditional role they play in support policies for the elderly and people with disabilities. This will facilitate access to field and make it possible to initiate scientific research and social exchanges, which are often productive. The partnerships built between private organizations from civil society and local authorities will enable the Aurelia research to have a strictly social impact.
The project’s spin-offs will be diverse. The medium-term scientific aspects are important and linked both to the international nature and to the interdisciplinary character of the Aurelia project. The creation of long-term links between researchers from different countries working in a large number of social science disciplines and the medical sciences will constitute an active contribution to the constitution of a vast research community focused on the issues of autonomy and LTC. The existence of strong and long-lasting links between researchers who are above all inserted in their disciplinary and national space will eventually make it possible to formulate research questions and to develop and carry out investigation methodologies, which will take into account the various disciplinary contributions. The contribution of such expertise that extends greatly beyond disciplinary boundaries – particularly those between the humanities, social sciences, and medicine – will also form the basis of a strong societal contribution.
Beyond the scientific spin-offs, however, the comparative analysis of national, territorial and individual autonomy support configurations will enable the dissemination and stimulation of good practices for institutions, organisations, territorial players, the people concerned, and their families.