Recommendations for Psychosocial Support for Long-Distance Caregivers of Terminally Ill Patients

Context. The provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support. Objectives. To date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany. The national Delphi study aimed at systematically and empirically generating recommendations for psychosocial support measures, tailored to this population. Methods. Recommendations were formulated on the basis of qualitative interviews exploring the support experiences and unmet needs of long-distance caregivers of terminally ill patients. Experts from hospice and palliative care rated the relevance and feasibility of 10 recommendations using two 4-point Likert-type scales. Additionally, suggestions for improvement were captured via free text fi elds. Recommendations were deemed to have achieved consensus when >= 80% of participants indicated " strongly agree" or " somewhat agree" for both relevance and feasibility. Results. A total of 26 experts completed two Delphi rounds. Following the fi rst round, eight of the 10 recommendations were revised according to participant feedback. After the second round, consensus was achieved for fi ve of these revised recommendations. Three recommendations were rejected, as participants regarded them unfeasible due to a perceived lack of personnel resources. Conclusion. The consensus-based recommendations represent the fi rst empirically grounded guidelines in Germany aimed at addressing the psychosocial needs of long-distance caregivers of terminally ill patients. The recommendations seek to raise awareness among both professional and voluntary workers regarding the specific support requirements of this understudied population. J Pain Symptom Manage 2025;69:10-22. (c) 2024 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-ncnd/4.0/).