Take actions to alleviate carers’ involvement in eHealth research
Guidance
Effectiveness research into eHealth interventions for community dwelling persons with dementia, often rely on information from and involvement of family carers. As they may already be (over)burdened by their caregiver tasks, participation in effectiveness research may be denied. It will be helpful to think of methods to support informal carers to participate in research.
Explanation and example
In the exergamingPhysical exercise interactively combined with cognitive stimulation in a gaming environment (e.g., Wii Fit©). Exergaming relies on technology that tracks the participants’ body movement or reactions, which are fed back into the digital game, influencing the course of the game that is shown on the screen. project, a bottleneck of participation of couples into the effectiveness study, was the refusal of family carers to participate because they were already (over)burdened. To accommodate caregivers they were offered support in filling out questionnaires and a little present to thank them for their contribution. This seems to have added slightly in the number of participants in our study. Other strategies to alleviate burden of participation in eHealth research may also be considered, like data logging or ecological momentary assessments.
Type of evidence
Joeke van Santen (INDUCT ESR7)
Randomized Clinical Trial (RCT)
References
Van Santen, J., Dröes, R. M., Twisk, J. W., Henkemans, O. A. B., van Straten, A., & Meiland, F. J. (2020). Effects of Exergaming on Cognitive and Social Functioning of People with Dementia: A Randomized Controlled Trial. Journal of the American Medical Directors Association, ISSN 1525-8610, https://doi.org/10.1016/j.jamda.2020.04.018
Van Santen, J., Dröes, R.M., Bosmans, J.E. Blanson Henkemans, O.A. Van Bommel, S., Hakvoort, E., Valk, R., Scholten, C., Wiersinga, J., Van Straten, A., Meiland, F. (2019). The (cost-) effectiveness of exergaming in people living with dementia and their informal caregivers: protocol for a randomized controlled trial. BMC Geriatrics 19:50, 2019. https://doi.org/10.1186/s12877-019-1062-x
As training manager of INDUCT, I am responsible for the overall coordination and organization of the individual and network-wide training of our 15 ESRs. My main task is the organization of five INDUCT Summer and Winter Schools. Together with the local and management team, we identify needs and interests among the ESRs, compose a varied program for the week including training sessions, project meetings and social and networking events, invite academic and non-academic expert speakers, organize practical matters, and afterwards we evaluate the event, write a report, and try to incorporate all suggestions in our future training events.