gms | German Medical Science

1st International Conference of the German Society of Nursing Science

Deutsche Gesellschaft für Pflegewissenschaft e. V.

04.05. - 05.05.2018, Berlin

Patient participation in 10 projects in palliative care: a multiple case study

Meeting Abstract

  • presenting/speaker Albine Moser - Faculty of Healthcare, Maastricht University
  • Inge Moes-Melchior - Zorgbelang Limburg
  • Ester Stoffers - Huis voor de Zorg
  • Frits Suntjens - Zorgbelang Limburg
  • Anouk van der Heijden - Zorgbelang Limburg

Deutsche Gesellschaft für Pflegewissenschaft e.V. (DGP). 1st International Conference of the German Society of Nursing Science. Berlin, 04.-05.05.2018. Düsseldorf: German Medical Science GMS Publishing House; 2018. Doc18dgpO29

doi: 10.3205/18dgp029, urn:nbn:de:0183-18dgp0298

Veröffentlicht: 30. April 2018

© 2018 Moser et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.


Gliederung

Text

Background and Purpose: Participation of people in palliative care is a relatively new development. Researchers often lack the knowledge and experience to put the mechanisms of participation into meaningful practice. The purpose of this research project is to strengthen patient participation in the context of palliative care.

Methods: This study consists of participatory action research with multiple case studies.

Research Focus: The study is carried out within a national research programme on palliative care. Ten projects are involved covering a range of different palliative care contexts such as education, research and practice. Implementation of patient participation, consists of several implementation activities: a) training and support for patient(representatives); b) training and coaching sessions for researchers; c) working with the participation matric; d) setting up a participation community of practice; e) performing a development-oriented evaluation and creating sustainable conditions. The impact of patient participation from the perspective of patient(representatives) and the underlying processes, how the impact was created, is studied using the context-mechanism-outcome classification.

Data are collected from April 2016 till April 2018 using field notes, observations, informal conversations and in-depth interviews. Data are analysed by content analysis.

Methodological and Theoretical Focus: The theoretical focus is the ladder of citizen participation.

Results: Preliminary results show that patient participation in palliative care project happens at different levels from being informed, consultation, advising, partnership and power depending on the research step. Several mechanisms are used such as participating in individual interviews and focus group discussions, as well as sounding boards, advisory councils, as a research partner and as member in steering committees. At the level of consulting mainly people who need palliative care are involved. At the level of advising, partnership and power patient representatives or patient advocates participate, implying a high level of indirect participation. Barriers and facilitators are identified at individual, project, organisational and societal level.

Conclusion: Patient participation in the context of palliative care research is possible can promote research that is more relevant and more ‘patient-centred’ for these vulnerable people.