Importance of patient and public involvement in doctoral research involving people living with dementia

Nurse Res. 2024 Mar 27. doi: 10.7748/nr.2024.e1919. Online ahead of print.

Abstract

Background: There is increasing recognition of the need to include patients and the public in the research process. There is extensive literature about patient and public involvement (PPI) in research, but fewer articles report on PPI in doctoral research.

Aim: To reflect on establishing an advisory group for a doctoral study, exploring the opportunities and challenges associated with including patients with dementia in the research process.

Discussion: The authors discuss the practicalities of establishing an advisory group, the challenges of being a novice researcher, long-term commitment to PPI, the overall approach to PPI and ethical considerations.

Conclusion: Establishing an advisory group for a doctoral study can facilitate mutual learning and enhance the study's quality.

Implications for practice: Achieving high-quality PPI in health and social care research can ultimately improve its quality and relevance. An important aspect of the doctoral journey is developing knowledge and skills to facilitate PPI as part of a researcher's apprenticeship.

Keywords: data collection; dementia; dementia awareness; focus groups; interviews; neurology; qualitative research; research; research methods; study design; study participation.