Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation

Demleitner H, Kauzner S, Schneider R, Schneider M, Ostgathe C, Klein C, Heckel M (2026)

Publication Type: Journal article

Publication year: 2026

Journal

Palliative Care and Social Practice Sage Publications

Book Volume: 20

Abstract

Background: Patient and public involvement (PPI) improves patient-targeted guideline material and is recognised internationally as essential in guideline development. Whilst current research has focussed on PPI both in guideline development and palliative care, evidence regarding its implementation in developing patient-targeted guideline material is limited. Aim: To explore participants’ experiences and identify supportive and challenging factors in the participatory development of patient-targeted guideline material in palliative care. Design: Qualitative evaluation of the participatory development process (04/2024 - 09/2024) of a patient guide to a German best practise recommendation on intentional sedation using questionnaires with open-ended questions followed by semi-structured interviews. Data were analysed using structuring qualitative content analysis according to Kuckartz. Setting/Participants: Four PPI members and four healthcare professionals randomly selected from the editorial panel tasked with developing the patient guide. Results: The participatory approach with experienced PPI-members as experts for lay-comprehensibility fostered an equal and respectful environment, allowing all participants to contribute. Despite successful organisation and communication, obstacles arose regarding time management and technical challenges with hybrid sessions and digital co-working formats. The participants did not require additional methodological training. Working in subgroups proved effective and offered emotional support but carried the risk of creating inequalities. Conclusion: PPI can be supported by recruiting experienced PPI advisory board members, providing flexibility through hybrid sessions and managing emotional distress through creating a save atmosphere with peer support in subgroup sessions. Communication barriers in hybrid meetings, rejection of digital co-working formats, inattention to PPI in subgroup sessions and time management issues must be considered when planning a project.

Authors with CRIS profile

Hannah Demleitner Department of Palliative Medicine Saskia Kauzner Department of Palliative Medicine Ronny Schneider Department of Palliative Medicine Manuela Schneider Department of Palliative Medicine Christoph Ostgathe Department of Palliative Medicine Carsten Klein Department of Palliative Medicine Maria Heckel Department of Palliative Medicine

How to cite

APA:

Demleitner, H., Kauzner, S., Schneider, R., Schneider, M., Ostgathe, C., Klein, C., & Heckel, M. (2026). Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation. Palliative Care and Social Practice, 20. https://doi.org/10.1177/26323524261465682

MLA:

Demleitner, Hannah, et al. "Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation." Palliative Care and Social Practice 20 (2026).

BibTeX: Download