Since launching the project “Last year of Life Study Cologne” (LYOL-C) in February 2017, several activities have occurred. The approval by the ethics commission was a first milestone for ensuring data protection law, and ethical and moral aspects in our surveys with relatives and health care providers.
In the subsequent months, we translated, adapted and partly transformed our questionnaire. Also, we pre-tested the questionnaire. We attended workshops on qualitative methods and started developing the interview guidelines. Furthermore, we received helpful information at a meeting with practice partners from health care in Cologne. For example, how to take current needs in health care into account. Moreover, the practice partners provided positive feedback on our study design. For recruiting our study participants, we created flyers and posters in an appealing design, to attract our target group. Our study is registered with the German Clinical Trials Register (DRKS). Shortly, we will publish a research protocol, presenting our study internationally. For this purpose, we are supported by international experts, for example, Prof. Sheila Payne (University of Lancaster).
Now, we need to reach 400 relatives and affiliated persons willing to reply to our questionnaire and share their valuable experiences with health care regarding the last year of life of the deceased. Our practice partners support the recruitment by distributing our questionnaires to potential participants. We have already received some completed questionnaires, and we look forward to the outcome, which will be used to prepare the interview guidelines.
By conducting qualitative interviews, we hope to gain a deeper insight into the care trajectories. The data protection regulation for the analysis of routine data has been clarified so can now start analyzing the customary statutory health insurance (SHI) data regarding care trajectories.