Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care
A qualitative study
Bibliographic Data
| ID | 19507233 |
|---|---|
| Authors | Inge Melchior (0000-0002-7585-0988, Zorgbelang Limburg (currently Burgerkracht Limburg) Sittard the Netherlands, corresponding author), Anouk van der Heijden (Zorgbelang Limburg (currently Burgerkracht Limburg) Sittard the Netherlands), Esther Stoffers (Zorgbelang Limburg (currently Burgerkracht Limburg) Sittard the Netherlands), Frits Suntjens (Zorgbelang Limburg (currently Burgerkracht Limburg) Sittard the Netherlands), Albine Moser (0000-0003-4073-2890, Zuyd University of Applied Sciences Heerlen the Netherlands) |
| Year | 2021 |
| Volume | 24 |
| Issue | 2 |
| Pages | 456-467 |
| Publication date | 2021-04-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Health Expectations (JOURNAL) |
| Journal identifiers | ISSN: 1369-6513 • E-ISSN: 1369-7625 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/hex.13186 |
| PMID | 33405359 |
| OpenAlex | W3120711340 |
| Language | EN |
| Citations received | 1 |
| References cited | 14 |
BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research. OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type. DESIGN: A participatory action research design. SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated. INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12-18 months, (3) a community of practice, and (4) a qualitative evaluation. RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI. DISCUSSION: A relationship culture appears to be long-lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks. CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship- and task-oriented PPI cultures. PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects
MEDLINE · Palliative care · Political science · Public involvement · Public relations · Qualitative research · Sociology · Health Policy Implementation Science · History · Medicine · Mental Health and Patient Involvement · Nursing · Patient-Provider Communication in Healthcare · Psychology
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Preparing researchers for patient and public involvement in scientific research
Current trends in patient and public involvement in cancer research
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A Dialogical, Story-Based Evaluation Tool
A Dialogical, Story-Based Evaluation Tool
Participatory action research
A Ladder Of Citizen Participation
The most significant lessons about the Most Significant Change technique
The Constant Comparative Method of Qualitative Analysis
| Unique citing works | 1 |
|---|---|
| Citations per year | 0,5 |
| Citation span | 2024 - 2024 (1) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 1 |