• Sulaiman Alshakhs, Taeyoung Park, Meghan McDarby, M Cary Reid, Sara Czaja, Ronald Adelman, Elisabeth Sweet, Caroline M Jedlicka, Diana Delgado, and Veerawat Phongtankuel.
• Weill Cornell Medicine, Doha, Qatar.
• J Palliat Med. 2024 Jan 1; 27 (1): 112127112-127.

AbstractThere is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

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