Developing information material to support the assessment of palliative care needs in dementia: a qualitative participatory approach

There are approximately 1.8 million people living with dementia in Germany, of whom many present with a wide range of symptoms and needs. The assessment of these symptoms is often challenging for nursing staff in long-term care settings. The dementia-specific version of the Integrated Palliative Outcome Scale (IPOS-Dem) can support this assessment by enabling the timely identification of the needs of people living with dementia. To facilitate the use of IPOS-Dem, a user-friendly manual is required. The aim of this study is therefore to develop information material for assessing palliative care needs among people living with dementia through an iterative and participatory process tailored to professional caregivers, and to explore the content requirements of these materials from the caregivers’ perspective. A multi-stage qualitative study involving a Patient and Public Involvement (PPI) group and a focus group with professionals was conducted. The manual was developed through an iterative and participatory process, which included revision based on input from the PPI group and the validation of the final version in a structured focus group discussion. The data was analyzed using Mayring’s qualitative content analysis. The PPI group consisted of three, the focus group of seven people (median age = 51 years; median work experience = 29 years). Feedback from the discussions encompassed themes that were incorporated into the revised version of the manual, including reducing continuous text, adding graphical elements to improve readability, revising the layout, and refining the case example to describe observable differences in a more concrete way. Linguistic revisions, such as simplifying and shortening phrasing, as well as making the manual more engaging and motivating, were also implemented. The manual was rated by the participating professionals as helpful and practice-oriented, supporting the systematic assessment of palliative care needs. The participatory and iterative development process ensured that the manual reflects the practical needs and perspectives of professional caregivers, thereby enhancing its relevance and acceptance in dementia care.