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patient participation in 10 projects in palliative care


- candidate number24463
- NTR NumberNTR5891
- ISRCTNISRCTN no longer applicable
- Date ISRCTN created
- date ISRCTN requested
- Date Registered NTR8-jun-2016
- Secondary IDs16-N-108 METC Zuyderland-Zuyd
- Public Titlepatient participation in 10 projects in palliative care
- Scientific TitlePatient participation in 10 projects in palliative care: a structural approach and implementation in three consortia palliative care
- ACRONYM
- hypothesisThe 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.
- Healt Condition(s) or Problem(s) studiedPalliative care , Terminal care
- Inclusion criteriaThe participants are patient (representatives) and senior and junior researchers.
- Exclusion criteriaN/A
- mec approval receivedyes
- multicenter trialno
- randomisedno
- group[default]
- Type[default]
- Studytype[default]
- planned startdate 15-jun-2016
- planned closingdate31-mrt-2018
- Target number of participants30
- Interventionsthe 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.
- Primary outcomeThe 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.
- Secondary outcomeN/A
- TimepointsDuring 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.
- Trial web site
- statusopen: patient inclusion
- CONTACT FOR PUBLIC QUERIESDrs. E. Stoffers
- CONTACT for SCIENTIFIC QUERIES A. Moser
- Sponsor/Initiator Zorgbelang Limburg, Hogeschool Zuyd, Huis voor de Zorg
- Funding
(Source(s) of Monetary or Material Support)
ZON-MW, The Netherlands Organization for Health Research and Development , Grant nr 80-82310-97-10018
- PublicationsN/A
- Brief summaryParticipation 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.
- Main changes (audit trail)
- RECORD8-jun-2016 - 8-jul-2016


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