WP1 : national regulations

Dynamics of national regulations for autonomy schemes (O. Giraud, B. Le Bihan)

At the national level, the autonomy regimes refer primarily to LTC policy regulations, defined in a broad sense as the different procedures dealing with formulating and treating public problems. The national arena is the framework where autonomy is loosely defined through national public debates and specifically defined through the institutionalisation of LTC policies. The research objectives defined in this WP are first of all descriptive and organized into three complementary tasks. The research operations mentioned in the different tasks will be carried out in the five countries selected for the comparison.

Socio-historical reconstruction of national regulations of autonomy regimes

Firstly, task 1 aims to build a socio-historical reconstitution of the national regulations of autonomy regimes over a period covering the years of industrialisation, urbanisation, and salarisation of societies, leading up to the present period. By systematically reviewing the works of historians and specialists in the field and analysing cultural productions (novels, autobiographical accounts, and cinematographic works) that have developed outstanding figures in this field, the project will outline not only the historical evolution of the uses of the notion of autonomy, but also the specific ways of dealing with social problems linked to loss of autonomy, not only for frail older people but also for people with disabilities. By analysing how issues related to the loss of autonomy transform first into social issues then into public issues, it will be possible to apply the analytical tools of sociology of public problems and combine them with those of a socio-historical perspective. The diachronic analysis of institutional reforms will allow us to grasp the evolution of the specific uses of the notion of autonomy and its translation into policy categories.

Identification of social and public discourses on autonomy

Task 2 will be devoted to identifying social and public discourses on autonomy. This second task is concerned with mapping out the discourses on autonomy in different national contexts. The work will consist of a survey and analysis of two sets of sources. Firstly, the textual corpora producing definitions and points of view on autonomy will be identified. This will give rise to a (qualitative) discourse analysis aiming to identify, on the one hand, the structures of the most influential discourses on autonomy and the main divisions that have occurred, and, on the other hand, the nodal points (connections) between these discourses. This qualitative textual analysis is inspired by the new discourse theory (Howarth 2000). The analysis of this first corpus will be conducted through six series of interviews in as many specialized networks. Firstly, we will identify the network of generalist public actors making up the public forum (Jobert, 2019) in the domain of LTC policies; then, the main actors will be interviewed. Secondly, we will interview the network of rehabilitation specialists who work with people after accidents, operations, or falls, which is transversal to the field of old age and disability. These interviews will be in collaboration with doctors specialised in re-education and functional rehabilitation (Dr. Linda Darmon, head doctor of the equipment centre at the Percy inter-army hospital; Marc Le Fort, head of the Physical Medicine and Neurological Rehabilitation Department at the Nantes University Hospital; and Prof. Vincent Tiffreau, member of the Sport, Health, Society research unit (EA 7369) and of the Re-education, Rehabilitation and Follow-up Care Unit at the Lille University Hospital). In terms of psychological, social, and financial care, we will integrate the dimensions of professional reintegration and returning to home. These areas allow us to work specifically on issues of autonomy. The first of these specialized networks is the public policy arena, where the more technical issues of LTC policies are negotiated. The second is the scientific forum that develops the relevant points of view in the scientific sphere (not only in the medical and related sciences, but also in the humanities and social sciences) (Ibid.). Finally, the LTC policy network (Ibid.) brings together people who are directly involved in political issues, negotiations between stakeholders, and dealing with the constraints or objectives pertaining to the technical and scientific spheres.

Analysis of the main recent support systems for autonomy

 Task 3 will be devoted to analysing the main LTC policies, particularly their most significant instruments that are dedicated to people with disabilities and frail older people. It will also analyse the autonomy of the LTC policies and specifically the principles of action underlying key policy instruments. This characterization will be based on designing the instruments and will seek to identify the bodies of knowledge (scientific or other disciplines) that inspired them.
The following instruments will be analysed in depth to ensure that they are also relevant to the national configurations observed outside France:
a)     Assessment of autonomy loss (impairment);
b)     Definition of a standard for restoring autonomy and the rationale for rehabilitation following autonomy loss;
c)     Tools for compensating for autonomy loss.
For these different functions, the following analyses will be produced:

  • Characterization of the explicit functions of the instrument. For example, in the case of autonomy loss assessment: damage assessment, guaranteeing social rights, medical diagnosis, quantifying medical costs, etc.
  • Characterization of the objectives (values) assigned to the instruments in terms of autonomy: autonomy of the person being cared for or of the carer; autonomy of implementation or of decisions; short- or long-term autonomy; negative or positive autonomy (Collopy, 1989; Giraud, et al., 2021); and autonomy through access to employment.
  • Characterization of action principles underlying the instruments: obligation (obligation to care), financial instruments, empowerment through information, capacity building (empowerment through training), employment, other means of action, and direct service provision.
  • Characterization of the specific operationality of the instruments. For example, in the case of the assessment of autonomy loss, we will be interested in the specific procedures  of the instruments’ implementation: external evaluation, dialogue, observation, questionnaire, self-evaluation, etc.
  • Characterization of the disciplinary knowledge (medicine, ergonomics, psychology, etc.) or doctrines (sometimes ad hoc) that inspired the instrument.