patient participation in 10 projects in palliative care

Participation of patients in palliative care is a relatively new development. Professionals often want to do more in patient participation. However, they lack the knowledge and experience to put the mechanisms of participation into meaningful practice. The main objective of this study is to sustainably strengthen patient participation in the context of palliative care in education, research and care practice projects.


This study consists of participatory action research with multiple case studies. The study will be carried out within a national research programme on palliative care. Ten out of 18 projects will be involved covering a range of different palliative care contexts such as education, research and practice.


The participants are patient (representatives) and senior and junior researchers.


The first part, implementation of patient participation, consists of several implementation activities: a)training and support for patient(representatives); b) training and coaching for research; c) working with the participation matric; d) setting up a participation community of practice among all 10 participating projects; e) development-oriented evaluation and creating sustainable conditions.


The second part focus on researching the impact of patient participation from the perspective of patient(representatives) and researchers. Additionally, the underlying processes, how the impact was created, will be studies by using the context-mechanism-outcome classification.


During the implementation data is collected through field notes, observations, informal conversations and video recordings. In the evaluation of the impact the data will be collected by in-depth interviews and focus group discussions. Data will be analyzed using content analysis.

The main objective of this study is to study the impact of patient participation from the perspective of patient(representatives) and researchers in 10 projects in palliative care. And to sustainably strengthen patient participation in the context of palliative care in education, research and care practice projects.

During the implementation data is collected through field notes, observations, informal conversations and video recordings. In the evaluation of the impact the data will be collected by in-depth interviews and focus group discussions.

the implementation of patient participation, consists of several implementation activities: a)training and support for patient(representatives); b) training and coaching for research; c) working with the participation matric; d) setting up a participation community of practice among all 10 participating projects; e) development-oriented evaluation and creating sustainable conditions.