Individualised autonomy (A. Petiau, A. Trenta)

The study will seek to characterize through mixed methods (quantitative and qualitative) the evolution of autonomy support around and for individuals. It will be as much about the configurations of actors in individual support as about their effects on the autonomy of these same actors and the individuals supported. Our objective is to qualify and objectify not only the transformations of and variations in the types of professionals involved, but also the place and role of family carers in the different regimes. Based on the processing of major public statistics surveys, on in-depth interviews, and on observations, we will centre our analysis on autonomy “in action”. The cross-analysis of the knowledge, practices, and trajectories of the various social actors involved in the design and implementation of care and/or support (professionals, family carers, and people in a situation of dependency) highlights the diversity of the systems of norms with which individuals have to deal in order to come to terms with the meaning of their activity and their identity.

Quantitative approach to stakeholder configurations

The objective of the quantitative approach is to describe the variations observed (in time and space) in care configurations according to the places and modes of care (in institutions and at home); the different levels and types of dependency; and, as far as possible, over time (in France at least). Our aim is to identify typical cases of care in terms of the configurations of actors specific to each sub-national territory and to measure their variability. 
The mobilisation of these data aims to draw on a quantitative panorama of the variations in support for individuals from professional and family interventions. Different typologies of support configurations will be developed to characterize these variations over time among territories and at different scales (national/territorial). The variations in these typologies will be assessed in relation to the results of Work Packages 1 and 2, and they will allow us to objectify the actual support and norms of autonomy. 

Qualitative approach to the acceptance of policies, instruments, and procedures for exercising autonomy

This second task proposes to study if and how the actors can use the schemes to maintain a form of autonomy for the recipients, their families, and the professional carers who are involved. How do people make sense of the policies and various schemes directed at them? How do they understand autonomy and its loss in terms of ability and decision-making over the long- and short-term? Do they fit into the policy categories or do they build their own LTC system by resisting policy schemes, linking them to other resources, or circumventing them? Do the different regimes lead to different ways of representing and using policies? What other resources, especially informal ones, do people and their relatives dedicate to achieving their autonomy? The survey will pay particular attention to understanding the ways in which policy instruments are promoted and specifically mobilised by people, taking into account their possible support from family networks and mutual assistance among relatives. This section will thus make it possible to put into perspective the continuities and discontinuities between the autonomy characterised in people’s ordinary behaviours (in terms of specifying their social rights) and the autonomy characterised by policy instruments and professionals.
We will analyse the work of stakeholders and the emphasis placed on the expectations of family members and recipients (people with disabilities or age-related dependence) in terms of autonomy by questioning the various stakeholders involved in individual care systems. The aim is to conduct in-depth semi-structured interviews with several professionals and family carers who work with the same care receivers in order to understand how the assistance configurations are set up and how they shape the notion of autonomy. In collective accommodation and support facilities, the observation periods already mentioned in will complete the survey. Wherever possible, and depending on health constraints, elderly and disabled people will also be interviewed. Ideally, observations of a variety of work situations will be carried out in institutions and at home (depending on local constraints). Cooperation with hospital practitioners (Percy Military Hospital, Nantes University Hospital, Lille University Hospital) will enable sharing the methodologies and contents of qualitative surveys with hospital practitioners in the field of measuring loss of autonomy and functional rehabilitation, as well as with patients. In studying the relationships and configurations of assistance, attention will be paid to the role of gender as well as to geographical and social origins.