Diverse perspectives on hospitalisation events among people with dementia: protocol for a multisite qualitative study

People living with dementia (PLWD) are more likely to experience hospitalisation events (hospitalisation, rehospitalisation) than those without dementia. Many hospitalisation events, particularly rehospitalisation within 30 days of discharge, are thought to be avoidable. Yet our understanding of dementia-specific risk and protective factors surrounding avoidable hospitalisation is limited to specific intersetting transitions and predominantly clinician perspectives. Broader insights are needed to design accessible and effective solutions for reducing avoidable hospitalisations. We have designed the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) Study to address these gaps. The objectives of the SUPPORT Study are to elicit and examine family caregiver, community and hospital providers' perspectives on avoidable hospitalisation events among PLWD, and to identify opportunities for effective prevention.

We will conduct a multisite, descriptive qualitative study to interview around 100 family caregivers, community and hospital providers. We will identify and sample from regions and communities with higher socio-contextual disadvantage and hospital utilisation, and will aim to recruit individuals representing diverse racial/ethnic backgrounds. Interviews will follow a descriptive qualitative design in conjunction with constant comparison techniques to sample divergent situations and events. We will employ a range of analytical approaches to address specific research questions including thematic (inductive and deductive), comparative and dimensional analysis. Interviews will be conducted individually or in focus groups and follow a semistructured interview guide.

The study is approved by the University of Wisconsin-Madison Institutional Review Board. Informed consent procedures will incorporate steps to evaluate capacity to provide informed consent in the event that participants express concerns with thinking or memory or demonstrate challenges recalling study details during the consent process to ensure capacity to consent to participation. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with collaborating organisation partners.