Report on Exchange By Charlèss Dupont

Working as a PhD student at the End-of-Life Care Research Group (Vrije Universiteit Brussel), supervised by professors Lieve Van den Block and Tinne Smets, I developed a website specifically designed for, and with, people with dementia and their families to support advance care planning conversations. Advance care planning (ACP) is a process that enables individuals to explore and identify their values, preferences, and goals for future (medical) care. Through the INTERDEM Academy Fellowship I was able to set up a collaboration with professor Maurice Mulvenna, who is a Professor of Computer Science, and his colleagues at Ulster University (Belfast, Northern Ireland). The objective of my research visit was to learn how to use web log data in the evaluation study of the ACP website for people with dementia and family caregivers.

To examine the experiences with and usage of the ACP website by people with dementia and their family caregivers, I will collect interview and survey data directly from people with dementia and their family caregivers. However, because of fluctuating cognitive abilities and challenges in recollecting events, participating in interviews and surveys can be difficult for people with dementia. For that reason, we will also collect web log data in addition to the interview and survey data. Web log data are records of websites use and can provide information (via log files) on the interaction between the user and the website.

During my research visit I learned how web log data can be collected and the ethical considerations involved. I am grateful to have been able to learn from professor Mulvenna’s and his colleagues’ experience with using this method and data collection procedure. Thanks to the collaboration, I was able set up an infrastructure to collect log data in the evaluation study of the ACP website.

The INTERDEM fellowship has allowed me to build a sustainable collaboration with professor Maurice Mulvenna and his colleagues at Ulster University. The knowledge I gained during the four months in Belfast will be a great asset to my research and future career. I would specifically like to thank professor Maurice Mulvenna and Courtney Potts for their warm welcome and pleasant cooperation.