Collecting data on the experiences and perspectives of people with dementia in the acute care hospital setting: A systematic scoping review

Background People with dementia frequently experience poor health outcomes that require hospitalisation; however, the hospital setting is generally unsuitable for these patients. While it is well-recognised that understanding patient perspectives is crucial to providing person-centred care, current clinical care guidelines do not describe how to effectively collect feedback from people with dementia. Historically, people with dementia have generally been neglected from data collection exercises among practitioners and academic researchers, alike. Objective The objective of this review is to describe the data collection processes from peer-reviewed evidence sources that include direct consultation with, and elicit feedback from, patients with dementia about their care experience in the hospital setting. Methods The protocol for this systematic scoping review was pre-registered (https://doi.org/10.6084/m9.figshare.16614667.v1). The review considered primary quantitative and qualitative research involving people with dementia as research participants, regarding the quality of hospital care from the patient's perspective. Four databases were searched (MEDLINE, CINAHL Complete, APA PsycINFO and Embase), with 14 studies meeting the eligibility criteria. Results There has been an increased interest in gaining the perspectives of people with dementia on their health care over the past 5 years. Sundry methodologies were employed by these studies, but most used informal qualitative interviews to support and enable participants with diverse symptoms and functional abilities to take part. Procedures concerning recruitment, ethics and consent, and data collection processes were, likewise, varied and not reported consistently across this body of evidence. Conclusions People with dementia can be meaningfully consulted as research participants in the hospital setting. Increased rigour when reporting the methodologies and strategies used during data collection is needed to provide guidance for health services and researchers to further enable the inclusion of people with dementia.