Background
Non-relatives from the neighborhood or circle of friends sometimes provide extensive care for people in end-of-life situations in addition to or instead of family members. There is little evidence in the literature about the experiences, burdens and enrichments of non-relative caregivers. These non-relatives can be acquaintances, friends or neighbors, for example. Traditional counseling services and informative lectures and training courses are often aimed at relatives, but not at non-relatives.
Aims
In this project, we would like to investigate the extent to which non-relatives contribute to the care of people at the end of life.
- What experiences do these non-relatives have?
- What burdens do they experience?
- What enrichment does the task of caregiving bring?
- What needs and wishes for support services do they have?
Methods
In a first step, we will use a questionnaire to ask non-related carers about their stresses, enrichments, psychological well-being and needs. In addition, we will use the questionnaire to record the extent of their care and other demographic data.
In a second step, our cooperation partner, the Department of Palliative Medicine at Erlangen University Hospital, will conduct in-depth interviews with a selection of people of different ages, genders, origins, educational backgrounds and employment statuses about their caring activities, motivation and needs.
Relevance of the expected results
We will use the results and findings to create a framework that identifies the specifics of the situation of accompanying a non-related person at the end of life. The framework will serve as a basis for the development of support measures for non-relative caregivers and will identify further research needs.
Funding
The research project is funded by the German Research Foundation (project number 528683214; project duration: 01.07.2024-30.06.2026) with an in-kind grant in the Department of Public Health, Medical Care Research and Social Medicine.
Consortium partner
NOCA is a consortium project in cooperation with the Department of Palliative Medicine at the University Hospital Erlangen.
Participants wanted
Are you currently caring for someone in your neighborhood, your circle of friends or acquaintances? Share your experiences with us and tell us how you are experiencing this special situation. Your experiences are very important, as there have only been a few studies on the situation of non-relative carers to date.
How can you take part?
You can take part in an online survey (duration approx. 15-20 minutes).
Why take part?
Your perspective will help to make the reality of carers' lives visible and improve support for those affected.
Participation:
Click here to go directly to the questionnaire.
We will be happy to send you a paper version of the questionnaire on request.
Alternatively, you can scan the QR code to access the questionnaire with your smartphone or tablet.
You can find more information on how to take part on our flyer or in our video.
Please feel free to contact us.
Catharina Münte
Phone: 0511 532-4506
E-mail: muente.catharina@mh-hannover.de
Publications
Heckel M, Herbst FA. Non-kin caregivers of terminally ill people: Contributions, experiences, and needs: A protocol for a mixed-methods study. PLoS ONE. 2024; 19(6): e0306282. (PLoS ONE)
NOCA - Contact
PD Dr. Franziska Herbst (Project Manager)
Catharina Münte, M.A. (Research assistant)
NOCA - Project Office
Phone: +49 511 532-4506
Address
Hannover Medical School
Institute ofGeneral Medicine and Palliative Medicine
Carl-Neuberg-Strasse 1
30625 Hanover