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

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.