Personas cuidadoras con acciones y posiciones variadas: perspectiva comparada de la expresion "personas cuidadoras" en Francia y Japon.

AutorDamamme, Aurelie

Caregivers with diverse actions and orientations: putting the expression of caregivers in France and Japan in perspective

Summary. 1. Institutional differences and representations of vulnerability in support of the elderly and disabled in France and Japan. 1.1. Support systems for disability and age-related loss of autonomy. 1.2. Social representations of vulnerability and family carers. 2. Language of caregivers or the difficulties in making a comparison. 2.1. Difficulty of international comparison based on qualitative research. 2.2. Constructing a Care Orientation Diagram: a review of the method used. 3. How carers express themselves concerning resource mobilization and the evaluation of the organization of care: a Care Orientation Diagram drawing new lines of questioning care situations. 3.1. Care, an ordeal successfully overcome by a high level of resource mobilization (in the upper-right of the diagram). 3.2. Care experienced as an ordeal despite the mobilization of significant resources (in the upper-left of the diagram). 3.3. Care experienced as an intimate and satisfying ordeal (in the lower-right of the diagram). 3.4. Care experienced as an ordeal to be avoided (in the lower-left of the diagram). 4. In conclusion. 5. References.

Como citar: Damamme, A.; Sugita, K. (2020). Caregivers with diverse actions and orientations: putting the expression of caregivers in France and Japan in perspective, Cuadernos de Relaciones Laborales, 38(2), 251-268.

What are common expressions of concern for loved ones in countries as different as France and Japan? Is providing care to an elderly or disabled relative always and primarily a fundamentally unique activity, implementing provisions that language alone has difficulty in understanding (Laugier, 2009; Paperman, 2013)? Furthermore, care activities are primarily shaped by socio-political contexts that organize their distribution methods (Jenson, 2001). Why then seek to put into perspective situations that we know are likely to be immeasurable?

Even if we are part of a fundamentally qualitative approach, attentive to the expression of singularities, we have nevertheless opted for the view that such a perspective is of interest. For despite the difficulties of comparison, it seemed heuristic to us to try to explore the common forms of this language of care. While elsewhere, we have endeavored to analyze the interdependence between the professional and carer trajectories (Damamme, Sugita, Wierink, et al., 20153), in this article we will focus on the narrative dimension of these caring activities. Our understanding of care has been enriched by different studies, from those on the ethics of care by Joan Tronto (2009) and Evelyn Nakano Glenn (2016) to those in the field of kinship care (Weber et al., 2003). From these different roots, we have considered care in its material and moral dimensions (Laugier et Paperman, 2005). It also seems central to us to take into account the possibility of a spectrum of expressions around the activities of care--love as well as hate or anger (Molinier, 2013).

In order to understand this multiplicity of actions and expressions of caregivers, we used a survey based on interviews and multi-site questionnaires (in Osaka, Japan in 2011-2012 and the Ile-de-France and Rhone-Alpes regions of France in 2012-2013) with caregivers of elderly relatives, relatives with disabilities, and "young" Alzheimer patients. Unlike the survey in Osaka, caregivers in France were interviewed twice, one year apart. Access to the respondents was made possible thanks to the support of several organizations and groups that provide support or mutual aid to caregivers.

In this article, we will focus on analyzing how the caregivers we met shared this experience of care, focusing on their description of the situation on a practical, emotional, and moral level. To this end, we have drawn on 50 caregiver situations from Japan and 32 from France.

Before getting to the heart of the narratives, we will briefly present the institutional aspects of the accompaniment of different types of loss of autonomy in both countries.

  1. Institutional differences and representations of vulnerability in support of the elderly and disabled in France and Japan

    Although this article is not intended to explore all the organizational differences between the two countries, we felt it was essential to recall the main legislative provisions that shape the organization of care in both countries.

    1.1. Support systems for disability and age-related loss of autonomy

    On 1 January 2002, French public authorities introduced the personal autonomy allowance (APA) for situations of age-related loss of autonomy, reflecting a policy of granting assistance for the performance of daily tasks. This was contingent on the person's situation in terms of health and autonomy and not just on income, as had previously been the case with the special dependency benefit. (4) Even if the practical organization of care is very different according to class (Weber, 2010), home help policies have developed to such an extent over the last fifteen years that the legitimacy of receiving help for an elderly relative seems to have become established in the current representations of French families (Trabut, 2014).

    The Japanese public care system for dependency has moved from the logic of social assistance to that of the contract. The introduction of this insurance system, which we will refer to by the acronym LTCI, (5) has encouraged the use of assistance and has resulted in a definite increase in the use of personal services (Masuda, 2003; Sugisawa et al., 2005). Indeed, some respondents speak of a new facility of access in seeking public assistance, since being the object of social assistance was and still is stigmatizing. The principle of the contract has removed this barrier and made the use of services more psychologically affordable. In this way, society's views and the social values underlying them play an essential role in the use of support services. In the Japanese case, the dense territorial network of "care managers" (6) and associations of carers for the elderly also encourages the use of these services and information in the practical organization of care. In Osaka Prefecture, for example, these associations organize a variety of training courses, ranging from lectures with academic guests to practical workshops on practical support tasks. These regular activities are organizationally, administratively, and materially supported by the Council for Social Work. (7) These favorable conditions, combined with the relatively long history of these aid associations, (8) promote the stability of these locally rooted associations.

    On the other hand, there is no organization at the national level equivalent to the French Caregivers' Association. There is a severe lack of political action on the part of the Japanese caregivers' associations, which do not make formal demands for the recognition of caregivers by public authorities but rather focus on the practical organization of care for elderly or disabled people (Sugita, 2011). In France, recognition of the role of carers has increased considerably in recent years (Gand et al., 2014), and the introduction of a new care leave for caregivers is evidence of this. However, resources are still minimal compared to the support needs expressed by existing caregiver associations, which often center their work according to the type of autonomy loss--mental or psychological disability, and Alzheimer's disease, among others.

    Work comparing the assistance provided to the elderly in France and Japan highlights organizational differences which have two main effects: on the one hand, they lead to a lower use of specific services by Japanese carers, due to a lack of sufficient means to support the share that goes to the beneficiaries and their carers, penalizing low- and middle-income carers. The French organizational system has resulted in greater reduction of social inequalities in access to the services offered (Ishii, 2013).

    On the other hand, one should also note the differences in the offer of services between the two countries. These have affected the practical organization of assistance. Thus, French respondents make greater use of residential facilities for elderly dependents (Ephad) than their Japanese counterparts. Conversely, the relatives of the people surveyed in Japan oriented more towards daycare centers and temporary accommodation establishments for their relatives, who are more numerous in Japan than in France.

    The law of 11 February 2005 introduced a new architecture and new concepts of care. It introduced a single reception facility, the Maison departementale des personnes handicapees [Departmental Center for the Disabled] (MDPH). The Commission on the Rights and Autonomy of Disabled People (CDAPH) plays a pivotal role, as it is responsible for assessing the rate of personal disability, from which a set of benefits is derived. This includes allowances such as the Allocation d'education de l'enfant handicape [Education Allowance for Disabled Children] (AEEH) and Allocation adulte handicapee [Allowance for Disabled Adults] (AAH) as well as a set of administrative aids, including the recognition of the disabled person's card. The CDAPH also decides on the allocation of the Disability Compensation Benefit (PCH), a benefit created by the 2005 law and which makes physical adaptations and the presence of human aid possible through the implementation of a personalized compensation plan. This new law "for equal rights and opportunities, participation and citizenship of persons with disabilities" reflects an increased concern for inclusion in the community, even if this new paradigm does not accompany sufficient political will and resources (Ville et al. 2014).

    In Japan, the Law of Assistance for the Autonomy of Persons with Disabilities was introduced in 2006 for children...

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