Developing competence through action research 

In Sweden today, almost 40% of deaths occur in residential care homes (RCHs), often soon after admission. Research shows that while many elderly people wish to discuss their thoughts and preferences about end-of-life (EoL) care, few feel they are able to do so and be listened to, and there are many challenges for RCH staff in communicating about death and dying and providing quality EoL care.

This research project is developed in collaboration with Stockholm City Elder Care Bureau, with the overarching goal to use knowledge generated in collaboration with stakeholders to support and, ultimately, improve communication about EoL issues in elder care.

Through a series of focus group discussions we explore staff experiences, reflections and concerns about EoL care-related issues in elder care to identify perceived challenges and facilitators for communication about dying and death. In the project we also aim to explore whether the DöBra cards could be a potentially useful tool to support conversation about EoL care values and preferences in elder care, from the perspectives of staff, residents and relatives.

In our transdisciplinary and international collaboration with a variety of researchers, stakeholders and organizations we use knowledge exchange and participatory action research to improve collaboration between actors in organizations and support person-centered care. Together with stakeholders we formulate suggestions for improvement according to local needs and experiences, aiming to develop methods to actualize person-centred care. We follow local initiatives to better understand the organizational features needed to develop a supportive environment conducive to change processes to improve EoL care.


Title: Continuums of Change in a CompetenceBuilding Initiative Addressing End-of-Life
Communication in Swedish Elder Care

Authors: Therese Johansson, Carol Tishelman, Joachim Cohen, Lars E. Eriksson och Ida Goliath.

Published in Qualitative Health Research, May 2021.


Project leader:


Therese Johansson, PhD Student, Karolinska Institutet


Project group/ Collaborators: 

Ida Goliath,  main supervisor, Med. Dr, Karolinska Institutet
Carol Tishelman, co-supervisor, professor, Karolinska Institutet
Lars Eriksson, co-supervisor, senior lecturer, Karolinska Institutet
Joachim Cohen, co-supervisor, professor, Vrije Universiteit Brussels, Belgium
Lena Alksten, strategist, Stockholm Elder Care Bureau

Health care professionals, quality developers, medically responsible nurses and unit managers in the districts of Enskede-Årsta-Vantör and Kungsholmen, Stockholm. 

In collaboration with Stockholm Elder Care Bureau