Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an "E-nabling digital co-production" framework.

BACKGROUND: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since the lockdowns, offering recommendations regarding future digital and hybrid working. Furthermore, it introduces a co-produced framework for researchers, PPI coordinators and public contributors to identify and discuss challenges and opportunities provided by e-PPI. METHODS: Two online workshops and one individual interview were performed with a group of researchers and PPI coordinators with experience in PPI in dementia research, and with an existing dementia PPI group having some experience of working online during the pandemic. The project was constructed as a PPI activity, with the MindTech Involvement Team (PPI group) involved in the entire process, and a collaborative data analysis process was adopted. RESULTS: After refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified four main themes, resulting in the 'E-nabling Digital Co-production' Framework. During this framework development, different positions were expressed, associated with the transition to digital working. Two main themes were shared by the participating groups regarding e-PPI: wider potential reach without geographical constraints, and the perception of more business-like sessions with reduced opportunities for social interactions and communication. Specifically for dementia research, whilst e-PPI may allow public contributors to attend more meetings, potentially mutually supportive environments provided by face-to-face meetings could be diminished, with carers experiencing a possible reduction in informal respite opportunities. CONCLUSIONS: Through involving public contributors, researchers, and PPI coordinators with a focus on digital PPI in dementia research, we were able to further refine and co-produce the 'E-nabling Digital Co-production' Framework. Demonstrating potential for analysis of benefits and limitations within e-PPI, it was possible to identify both general insights and those specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing digital and hybrid public involvement activities.

The COVID-19 pandemic has impacted the engagement of patients and the public in research. Lockdowns, social distancing, and reduced physical contact have affected the involvement of public contributors in research studies. In particular, the pandemic triggered a rapid transition to digital working, increasing the use of Information and Communication Technologies such as video conferencing on computers and mobile devices. With little time to reflect on the consequences of digital working in PPI and with a continuing legacy of hybrid or blended approaches to involvement, this project highlights the challenges and potential for e-PPI approaches (electronic/digital PPI) within the context of dementia research. In addition to examining the transition to digital working in this area, we present a co-produced framework for researchers, PPI coordinators and public contributors.

The influence of the down- and upscaling of activities in long-term care facilities during the COVID-19 visitor ban on caregivers' exhaustion and ability to provide care and support: A questionnaire study.

In the Netherlands, a national visitor-ban was in place in LTCFs during the first outbreak of COVID-19 in 2020. Meaningful activities were cancelled or downscaled, while others were performed more often. It is known that a lack of activities has several negative effects on residents, while the impact on caregivers remains largely unexplored. Here we investigate the influence of the down- and upscaling of activities on caregivers' physical and emotional exhaustion and their perceived ability to provide care and support. Downscaling of activities for residents, in particular watching television and musical activities, had a negative impact on caregivers' emotional exhaustion. The downscaling of watching television increased caregivers 'physical exhaustion. Furthermore, the downscaling of both activities had a negative impact on caregivers' perceived ability to provide ADL care and emotional support. This study triggers the need for more knowledge about the function of meaningful activities for residents, from a LTCF caregivers' perspective.

Adjustments in the range of activities offered in long-term care facilities during the COVID-19 visitor ban: Lessons learned

Background Residents of long term care facilities (LTCFs) are one of the most vulnerable groups worldwide to the coronavirus. During the COVID-19 outbreak in the Netherlands, as well as in many other countries, a national visitor-ban for LTCFs was in place (starting 20 March and (partly) ending on 15 June 2020). Organized (group) activities, offering a meaningful and pleasant day structure for both residents, were scaled down or completely stopped. So far, it remains unclear which particular types of activities were cancelled, whether ?replacement? activities were introduced that may acquire a structural character in the future, and how this affected care workers. Method Online questionnaire research into the consequences of the COVID-19 outbreak and restrictive measures in long term care facilities in the Netherlands was conducted at two points in time;six weeks after the COVID-19 visitor-ban was implemented (T1) and one week after the ban was (partly) lifted (T2). Residents, family members and care professionals were recruited independently for each measurement. This study only uses care professionals? data. Descriptive statistics, frequencies and independent t-tests were performed. Result During T1, 811 professionals completed the questionnaire, during T2 324. Care workers reported a decrease in regular group activities during the visitor-ban. For example, exercise activities, creative activities and music activities were undertaken less frequently. Domestic activities such as eating together and watching television were also scaled down as compared to before the visitor-ban. However, activities that could be easily done on the unit with sufficient social distance, such as music activities, conversations and playing games in the living room, were undertaken more frequently during the visitor-ban. The impact of the up- and downscaling of activities on care professional burden, and the perceived ability to provide adequate care, will be presented. Conclusion Activities are an important means for residents of long term care facilities for obtaining pleasure and giving a meaningful structure to the day. Future lessons can be learned from the adjustments that had to be made in the range of activities offered during the COVID-19 visitor-ban.