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

Abstract

ContextThe 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. ObjectivesTo 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. MethodsRecommendations 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 fields. Recommendations were deemed to have achieved consensus when ≥ 80% of participants indicated “strongly agree” or “somewhat agree” for both relevance and feasibility. ResultsA total of 26 experts completed two Delphi rounds. Following the first round, eight of the 10 recommendations were revised according to participant feedback. After the second round, consensus was achieved for five of these revised recommendations. Three recommendations were rejected, as participants regarded them unfeasible due to a perceived lack of personnel resources. ConclusionThe consensus-based recommendations represent the first 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.