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Our Deaths, Ourselves : An exploration of care, community, and dying in the Swedish welfare state

På svenska

Author

Summary, in English

The way that we die and care for the dying today is changing, related to extended life expectancy, neoliberalization, as well as shifting caring roles in relation to gender. In a time of “care crisis”, both formal and informal care resources are under duress, making the question of how to provide “a good death” complex and contested in new ways. Scholars in public health have posited a health promotion approach to palliative care where communities are uplifted as a source of social capital and support for the dying and their significant others. This model invokes the responsibility of civil society to provide support – through volunteerism, cultural engagement, or everyday compassion – during a period of time that will inevitably affect us all. However, this approach lacks a critical perspective which accounts for how gender and welfare shape possibilities for caring and living well until the end. Sweden is an interesting case for examining community perspectives on the end-of-life because of the welfare state context which has enabled a high degree of individual autonomy and independence from family and community throughout the life course. This dissertation fills this gap in research by exploring the relational networks of care which surround dying patients, their significant others, and communities in the unique Swedish context. It examines individual experiences of giving and receiving support in the end-of-life, while relating data back to the socio-political context of care in the welfare state via three empirical studies. Action research, feminist visual methods, and interviewing are employed to understand people’s agency to provide support in the end-of-life context; the different supportive roles played by family, community, and care professionals; and the lived experience of receiving social support in old age. To address the cross-border nature of this research, the dissertation ends with an empirical study examining hindrances and possibilities to interdisciplinary study of the topics of dying, death, and grief. This thesis, which also exemplifies the inquiry of this study, employs a transdisciplinary approach by bringing critical feminist theory into conversation with the literature on public health palliative care. It contributes to both fields by invigorating conversation on a topic seldom discussed in feminist scholarship, and uplifting gender and welfare as critical areas of interrogation in public health research and development.

Publishing year

2024-04

Language

English

Document type

Dissertation

Publisher

Lund University

Topic

  • Gender Studies
  • Public Health, Global Health, Social Medicine and Epidemiology
  • Sociology

Keywords

  • care
  • gender
  • welfare
  • palliative care
  • dying
  • end-of-life
  • community

Status

Published

Project

  • Exploring Narratives of Death - ASG, Pufendorf IAS

Research group

  • The Institute for Palliative Care
  • Proactive Integrated Care

ISBN/ISSN/Other

  • ISBN: 978-91-8104-034-0
  • ISBN: 978-91-8104-033-3

Defence date

5 June 2024

Defence time

13:00

Defence place

Gamla Köket's auditorium, Allhelgona kyrkogata 8, Lund

Opponent

  • Hanne Marlene Dahl (Professor)