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

• Final Report Year: 2023

Final Report Abstract

Many of the people in Germany who care for a relative live at a geographical distance from this relative; they are so-called long-distance caregivers. Caring for a terminally ill or dying person who lives far away is associated with specific challenges and burdens. In the German context, there is a research gap with regard to the specific experiences and needs of relatives who care for a geographically far person at the end of life. This study explicitly addressed family caregivers because they often put aside their own needs to focus on supporting their ill loved ones. The overarching goal was to detail the specifics of long-distance caregiving at the end of life in Germany, outlining how distance shapes end-of-life caregiving. The needs of long-distance caregivers were to be identified. The study was based on 33 one-time semi-structured interviews with long-distance caregivers. The qualitative interview approach is suitable to investigate the little-researched subject of long-distance caregiving at the end of life. In order to capture the diversity of care experiences, long-distance caregivers with heterogeneous characteristics (e.g. gender, age, employment status, relationship to the patient, care from Germany and abroad) were included. Recommendations for psychosocial support interventions for long-distance caregivers were formulated on the basis of the interviews and consented in a national Delphi-procedure. The recommendations are aimed at professional caregivers and voluntary workers in inpatient and ambulatory hospice and palliative care. The recommendations offer an empirical approach to practical psychosocial support for long-distance caregivers who care for a geographically far person at the end of life. The knowledge generated informs society and policy makers about the integration of and support for long-distance caregivers of patients at their end of life. The project is particularly important as the members of more and more families live in spatial separation. This current trend 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.

Publications

• Informelle Fürsorge am Lebensende bei räumlicher Distanz—Protokoll einer explorativen Studie mit Angehörigen. 55. Kongress für Allgemeinmedizin und Familienmedizin „Digitalisierung—Chancen und Risiken für die Allgemeinmedizin.“ Lübeck, September 16–18, 2021. GMS Ger Medical Sci.
  Herbst F. A.; Schneider N. & Stiel S.
  
• Informelle Fürsorge am Lebensende bei räumlicher Entfernung: Ein Scoping Review. 14. Kongress der Deutschen Gesellschaft für Palliativmedizin (DGP) „Palliativversorgung: Segeln hart am Wind“. Bremen, 28. September-01. October 2022. Z Palliativmedizin. 23(5): e26.
  Herbst F. A.; Ülgüt R.; Schneider N. & Stiel S.
  
• Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany. BMC Palliative Care, 21(1).
  Herbst, Franziska A.; Schneider, Nils & Stiel, Stephanie
  
• Zwischen zwei Welten. Versorgung von Angehörigen bei räumlicher Distanz. Angehörige pflegen 2022;1:20–21.
  Herbst F. A.; Schneider N. & Stiel S.
  
• „Der Einsatz eines Expertenbeirats in einem Forschungsprojekt zur informellen Fürsorge am Lebensende bei räumlicher Entfernung“. 8. Wissenschaftliche Arbeitstage der Deutschen Gesellschaft für Palliativmedizin (DGP) “Palliativ vernetzt: WAT für die Zukunft!“ Sine loco [online], March 4–5, 2022. P14
  Ülgüt R.; Stiel S.; Schneider N. & Herbst F. A.
  
• Diversitätsorientierte Rekrutierung von fürsorgenden Angehörigen in einem Forschungsprojekt zur Palliativversorgung. 8. Wissenschaftliche Arbeitstage der Deutschen Gesellschaft für Palliativmedizin (DGP) “Nachhaltigkeit – WAT bleibt?! “ Göttingen, March 3–4, 2023. P6
  Ülgüt R.; Stiel S. & Herbst F. A.
  
• Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review. BMJ Open, 13(4), e068175.
  Ülgüt, Rojda; Stiel, Stephanie & Herbst, Franziska A.
  
• Informal Long-distance Caregiving at the End of Life: Results of a Scoping Review (P3.010). 18. World Congress of the European Association for Palliative Care (EAPC) “Equity & Diversity.” Rotterdam, 15.-17. June 2023. Palliat Med 37(1) suppl.
  Herbst FvA; Uelguet R. & Siel S.
  
• Über eine räumliche Distanz für einen schwerkranken Menschen sorgen. Empfehlungen für psychosoziale Unterstützungsmaßnahmen für Long Distance Caregivers. Projektgruppe LoCatE des Instituts für Allgemeinmedizin und Palliativmedizin der Medizinischen Hochschule Hannover & Deutsche Gesellschaft für Palliativmedizin e.V. (Eds.) 2023. ISBN: 978-3-00-076207-9
  Herbst F. A.; Ülgüt R.; Stiel S. & Schneider N.
  
• „Wichtig wäre ein kurzes Gespräch: ‚Wie kommen Sie hierher? Wie machen Sie das?‘ “ eine qualitative Studie zu Unterstützungswünschen von Long Distance Caregivers schwerkranker Menschen am Lebensende. 22. Deutscher Kongress für Versorgungsforschung „Gesundheitsbezogene Versorgungsforschung – Motor evidenzbasierter Gesundheitspolitik.“ Berlin, October 4–6, 2023. GMS Ger Medical Sci.
  Herbst F. A.; Ülgüt R. & Stiel S.