Status: January 2018
We exchanged ideas regarding our proposal for the second funding phase of LYOL-C and designed a coherent follow-up project based on the results of our present project.
During the advanced training course in palliative medicine (“Köln-Göttinger Fortbildung Palliativmedizin”) in Cologne, which was organized by the German Cancer Aid, we were allowed to present the project LYOL-C. Afterwards, we had a constructive exchange regarding the care situation in the last year of life with the attending physicians from the region of Cologne.
Since November, Alina Kasdorf has supported us as a research assistant. She has replaced Christian von Reeken, who assisted us for the first year and a half.
Status: October 2018
Data collection was completed both from the written survey and from the in-depth qualitative interviews. In total, over a period of nine months, 365 relatives and affiliated people participated in the postal survey regarding the care in the last year of life in Cologne.
The participants were recruited via public relations activities providing information about the study and by our partners from health-care institutions in Cologne (for further information on our recruiting strategies see status of 27th March 2018).
The interviews were successfully completed, with 41 people attending. We heard many different personal stories from which we gained a deep insight into the care pathways in the last year of life. The systematic analysis of the interviews, during which we study typical patterns and central aspects, has started. Additionally, a qualitative analysis of the free-text answers in the questionnaire is intended.
Secondary data analysis
The secondary data analysis is about to start. It is expected to be conducted in early 2019.
Transfer of results
Scientific publications are planned for next year. LYOL-C will be featured at the German Congress for Health Services Research with two contributions.
Status: July 20, 2018
Thanks to the valuable support of our practice partners, 360 relatives and affiliated persons replied to our questionnaire regarding the care in the last year of life. Even though many participants are affected by the loss of relatives, we received a lot of positive feedback regarding our study. Some participants wished for some help to cope with bereavement, so we’ve been able to mediate successfully to grief counselors. We will analyze the collected data soon.
For the second project phase, we conducted qualitative interviews with 26 participants who responded to the questionnaire. Thanks to the openness of the interviewees, we gained sophisticated insights into the health and social care at the end of life. For example, typical interface problems, as well as barriers and uncertainties regarding communication and information at the end of life, were named. The relatives’ perspectives show us difficulties within care processes, in addition to supporting resources.
Our study protocol is now published in the journal BMJ Open and can be found here. In September, we will present our instrument and our mixed-methods study design at the Congress of the German Association for Palliative Medicine, in Bremen. We will also present it in October at the Congress on Health Care Research, in Berlin.
Also, LYOL-C was presented to citizens of Cologne, at the event “A coffee with science”, within an entertaining and easy-to-understand lecture.
We congratulate our patient representative Mr. Dieter Jänsch (Palliative & Hospice association) on his election as a member of the CoRe-Net steering board.
Status: March 14, 2018
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.