Long-distance caregiving at the end of life (LoCatE)

• Applicant: Privatdozentin Dr. Franziska A. Herbst
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2020 to 2024
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 449568227

Of the approximately 4.7 million people in Germany caring for a relative, many live at a physical distance from their loved one. Providing care from afar to a terminally ill or dying person is associated with specific challenges and burdens. For the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically far from their relative.The study explicitly addresses caregivers, as they often put aside their own needs to focus on supporting their loved ones. The overarching goal is to detail the specifics of long-distance caregiving at the end of life in Germany, outlining how distance shapes end-of-life caregiving and to identify the needs of end-of-life long-distance caregivers. The core research questions are: (1) How do caregivers experience their long-distance caregiving for a relative who is at the end of life? (2) What are specific (support) needs that end-of-life long-distance caregivers have and support they want for themselves and the care recipient? The study will (i) describe the specifics of long-distance caregiving at the end of life and (ii) give recommendations for support interventions for long-distance caregivers.The exploratory qualitative study is guided by an inductive logic and draws on one-time semi-structured interviews. The qualitative approach is appropriate to explore the understudied phenomenon of long-distance caregiving at the end of life. To grasp the multiplicity of caregiving experiences, long-distance caregivers of patients in early palliative care as well as in a very advanced stage will be included in the study. The study is divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations.The study aims at producing knowledge that will inform society regarding the integration of and support for family caregivers of patients at their end of life. The study is particularly relevant as the members of more and more families live in spatial separation. This current development is likely to intensify in the future and will challenge traditional models of family care for one another and raise new caregiving issues that must be addressed from a social and health policy point of view.

• DFG Programme: Research Grants