21. Autonomy in long-term care – ideas, discourses, regulations, and practices

Olivier Giraud, CNRS/LISE

Ralf Och, CNRS/LISE, University of Hamburg

Individual autonomy is one of the main values in modern liberal democratic societies (e.g. Hurka 1987). This notion has particularly been debated and influential in the reform agenda of social policies since the 1990’s (Börner et al. 2017). People in need of long-term care (LTC), as well as those who care for them, are faced with different forms and degrees of autonomy losses. To frame care needs in relation to the multidimensional and differentiated notion of autonomy, rather than as dependency, brings a new perspective into normative, political, and practical aspects of LTC.

In this perspective, LTC policies that support older people in need of care influence their chance to (re)gain some part of their autonomy, and this, concerning specific aspects of autonomy (Eggers et al. 2024). The lens of autonomy brings new light on several aspects of LTC.

The LTC policies developed in various welfare states differ substantially in terms of which aspects of autonomy they emphasise (Eggers 2023, Rostgaard et al. 2024), e.g. financial support, choices in regard of the care task, processes, and carers or in regard to carers, financial compensation, social and/or working rights, support for work life balance etc. They may also differ regarding how they regulate and organise the support for autonomy in LTC on different levels of government. In various regional, national, professional or social contexts, the concrete practices of implementation of LTC policies echo as well various conceptions of and relations to the notion of autonomy. Finally, we believe that the way care recipients receive LTC as it is provided by professional carers, relatives or other carers, is largely influenced by their conceptions of personal autonomy (Giraud et al 2022). Pioneer works had, already in the late 1980’s (Collopy, 1989), mapped out various dimensions of autonomy in the context of a LTC relation between care receivers and care providers. Executional autonomy, decisional autonomy, authentic autonomy, etc. are for instance relevant dimensions of autonomy that concern both care providers and care receivers (Ibid.).

We invite papers that focus on a wide range of research on autonomy in long-term care, such as:

  • What are the concepts of autonomy used in (national) discourses and regulations on autonomy in LTC, and how do concepts of autonomy related to LTC differ between welfare states?
  • How do (political) actors frame autonomy to make and implement LTC – policies, how do they deal with tensions and contradictions with other relevant concepts?
  • What do people in need for LTC and those who provide LTC do to achieve autonomy and (how) do they use welfare support to achieve a desired degree of autonomy?
  • How far are the individual preferences of the persons in need of LTC considered by both the professionals in charge of managing concrete care delivery measures and the carers implementing those measures?

Contributions are welcome from social scientists from any discipline relevant to these questions.

References

Börner, Stefanie; Bothfeld, Silke; Giraud, Olivier (2017): Editorial. Sozialstaatlichkeit und Autonomie: Historische, soziologische und wohlfahrtsstaatstheoretische Perspektiven. Zeitschrift für Sozialreform 63 (3): 333–353.

Collopy, Bart J. (1988): Autonomy in long term care: some crucial distinctions. The Gerontologist 28 Suppl, pp. 10–17.

Eggers, Thurid (2023) Social risks and active social citizenship—A cross-national comparison of long-term care policies for older people in European welfare states. Social Policy & Administration 57(3): 367–381.

Eggers, Thurid; Grages, Christopher; Pfau-Effinger, Birgit (2024): How culture influences the strengthening of market principles in conservative welfare states: The case of long-term care policy. International Journal of Social Welfare 33 (2): 413–426.

Giraud, Oivier; Petiau, Anne; Touahria-Gaillard, Abdia; Rist, Barbara; Trenta, Arnaud (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.

Hurka, Thomas (1987): Why Value Autonomy? Social Theory and Practice (13) 361–382. Rostgaard, T; Parsons, J and Tuntland, H (eds.)(2024) Reablement in Long-Term Care for Older People. International Perspectives and Future Directions, Policy Press.