Enabling meaningful participation and involvement in oncology and palliative care research: insights from two participatory research projects
4 affiliations
- 1Health Services Research, School of Medicine, Faculty of Health, Witten/Herdecke University, Witten, Germany
- 2Institute for Medical Biometry and Epidemiology, School of Medicine, Faculty of Health, Witten/Herdecke University, Witten, Germany
- 3Clinical Pharmacology & Center for Clinical Trials, School of Medicine, Faculty of Health, Witten/Herdecke University, Witten, Germany
- 4Philipp Klee-Institute for Clinical Pharmacology, Helios University Hospital Wuppertal, Wuppertal, Germany
Abstract
Background: Patient and public involvement (PPI) is increasingly recognized as essential in oncology and palliative care research. Yet, achieving meaningful participation of diverse stakeholders in multidisciplinary research teams remains difficult. This study aimed to explore how participatory processes were shaped, experienced, and adapted across two research projects in Germany, to identify aspects that facilitated or hindered meaningful participation and involvement and how collaboration is perceived.
Methods: A retrospective qualitative process evaluation of participatory processes across two research projects in oncology and hospice and palliative care was conducted. These projects involved patients, relatives, patient representatives, and healthcare professionals as co-researchers alongside academic researchers. Data included reflective group discussions, workshop and meeting documentation, co-researchers’ feedback, and researcher reflections. Data were analyzed inductively using thematic analysis and thematic triangulation across data sources and project contexts.
Results: Three overarching themes were identified: (1) facilitating meaningful participation and involvement, (2) challenges and adaptive strategies in the participatory process, and (3) perceived impacts of participation. Early involvement, transparent communication, visible use of contributions, and accessible research tasks supported trust, ownership, and perceived relevance. Challenges included changing participation capacities, scientific and epistemic complexity, digital and accessibility barriers, communication difficulties, and power imbalances. Flexible scheduling, facilitated working sessions, accessible tools, stronger emphasis on verbal feedback, and active moderation supported continued participation. Co-researchers described increased confidence, research understanding, and a sense of agency, while researchers perceived improvements in the relevance and usability of research processes and outputs.
Conclusions: Meaningful participation and involvement depended on combining clear structures with sufficient flexibility to respond to changing capacities, knowledge levels, and relational dynamics. Participatory processes in oncology and palliative care may therefore benefit from adaptable approaches that support sustained influence without requiring uniform or continuous levels of participation.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12904-026-02415-3.
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BibTeX
@article{neugebauer2026enabling,
title = {{Enabling meaningful participation and involvement in oncology and palliative care research: insights from two participatory research projects}},
author = {Till Neugebauer and Stephanie Knippschild and Veronika Bencheva and Sven Schmiedl and Fabian Erdsiek and Tuğba Aksakal and Yüce Yılmaz-Aslan and Patrick Brzoska},
journal = {BMC Palliative Care},
year = {2026},
month = nov,
doi = {10.1186/s12904-026-02415-3},
url = {https://doi.org/10.1186/s12904-026-02415-3},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Enabling meaningful participation and involvement in oncology and palliative care research: insights from two participatory research projects
AU - Till Neugebauer
AU - Stephanie Knippschild
AU - Veronika Bencheva
AU - Sven Schmiedl
AU - Fabian Erdsiek
AU - Tuğba Aksakal
AU - Yüce Yılmaz-Aslan
AU - Patrick Brzoska
PY - 2026
DA - 2026/11/04
JO - BMC Palliative Care
DO - 10.1186/s12904-026-02415-3
UR - https://doi.org/10.1186/s12904-026-02415-3
AB - Background: Patient and public involvement (PPI) is increasingly recognized as essential in oncology and palliative care research. Yet, achieving meaningful participation of diverse stakeholders in multidisciplinary research teams remains difficult. This study aimed to explore how participatory processes were shaped, experienced, and adapted across two research projects in Germany, to identify aspects that facilitated or hindered meaningful participation and involvement and how collaboration is perceived. Methods: A retrospective qualitative process evaluation of participatory processes across two research projects in oncology and hospice and palliative care was conducted. These projects involved patients, relatives, patient representatives, and healthcare professionals as co-researchers alongside academic researchers. Data included reflective group discussions, workshop and meeting documentation, co-researchers’ feedback, and researcher reflections. Data were analyzed inductively using thematic analysis and thematic triangulation across data sources and project contexts. Results: Three overarching themes were identified: (1) facilitating meaningful participation and involvement, (2) challenges and adaptive strategies in the participatory process, and (3) perceived impacts of participation. Early involvement, transparent communication, visible use of contributions, and accessible research tasks supported trust, ownership, and perceived relevance. Challenges included changing participation capacities, scientific and epistemic complexity, digital and accessibility barriers, communication difficulties, and power imbalances. Flexible scheduling, facilitated working sessions, accessible tools, stronger emphasis on verbal feedback, and active moderation supported continued participation. Co-researchers described increased confidence, research understanding, and a sense of agency, while researchers perceived improvements in the relevance and usability of research processes and outputs. Conclusions: Meaningful participation and involvement depended on combining clear structures with sufficient flexibility to respond to changing capacities, knowledge levels, and relational dynamics. Participatory processes in oncology and palliative care may therefore benefit from adaptable approaches that support sustained influence without requiring uniform or continuous levels of participation. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12904-026-02415-3.
SN - 1472-684X
ER -