The patients' and caregivers' perspective: In-hospital navigation aids for people with dementia- a qualitative study with a value sensitive design approach.

People with dementia (PwD) have serious difficulties orienting themselves in a hospital environment. In this qualitative study, we asked PwD and their informal caregivers about requirements for assistive technology when navigating in in-patient care settings. We aimed to provide user-centered recommendations for the development of an in-hospital navigation aid following a value sensitive design approach. We conducted semi-structured interviews with two stakeholder groups as potential future users of in-hospital navigation aids: PwD (n = 10, agemean = 83.9 years, MMSEmean = 21.2) and informal caregivers (n = 10, agemean = 75.9 years). The interviews were evaluated using qualitative content analysis in a multistage process involving six members of a self-help group for relatives of PwD as co-researchers. Independence and relief/respite were the most important values regarding assistive technology for PwD. Informal caregivers attributed greatest importance to safety and relief/respite. The underlying values of these stakeholder groups contribute to recommendations for designing new assistive technologies for patient-centered in-patient care: Assistive technology needs to overcome age- and disease-related limitations, and the resulting individual risks, while providing subsidiary assistance to maintain the desired independence of PwD for as long as possible.

The impact of participatory dementia research on researchers: A systematic review.

Participatory approaches are increasingly required and used in research. In this review, we examined the impact (benefits and disadvantages) of participatory dementia research on researchers as potential key actors to sustainably implement the participatory approach. Our aim was to provide information on how the participatory process could be improved. We conducted a systematic literature review covering the Cochrane Library, PsycNet, PubMed, Scopus, and Google Scholar. The inclusion criteria for publications were as follows: research (1) involving people with dementia as co-researchers, (2) including a description or discussion of the impact of participatory research for researchers, (3) published between 2000 and 2020, and (4) in English. We performed a quality assessment of the included publications. Our final review included nine publications; three categorized as high quality, five as medium quality, and one as low quality. Four of the publications categorized as high or medium quality implemented participation at the level of partnership, and two publications implemented participation at the level of delegated power. The beneficial impact of participatory dementia research on researchers consisted of an increased understanding of people with dementia that widened researchers' theoretical knowledge and perspectives and increased their competence in working with people with dementia. Disadvantages comprised the required additional effort and time as well as the difficulty of establishing a balanced relationship between researchers and co-researchers. Disadvantages may result from the lack of a definition and structure of participatory research and a lack of training on both sides. More well-designed and transparent methods of evaluating participatory research projects are needed.

Stakeholder involvement in dementia research: A qualitative approach with healthy senior citizens and providers of dementia care in Germany.

Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group-specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.

Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self-help group for relatives of people living with dementia.

BACKGROUND: Public involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases. OBJECTIVE: This article reports on an attempt to involve members of a self-help group for relatives of people living with dementia as co-researchers in the data analysis in a short-term format. METHODS: One researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co-researchers independently assigned pre-defined values to these statements. Subsequently, we compared the values of the researchers and co-researchers. RESULTS: The members of the self-help group identified four original values not considered by the researchers: consent, inclusion, participation and respect. DISCUSSION: The involvement of co-researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co-researchers and interview participants impeded the data analysis. CONCLUSION: The challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group-specific research involvement. Our recommendations relate to the recruitment of co-researchers, requirements for conducting a participatory data analysis and the participation degree of people involved. PATIENT OR PUBLIC CONTRIBUTION: The group of co-researchers participating in the data analysis consisted of relatives of people living with dementia.