Mapping Existing Informal Home Caregiver Support Guidelines for Palliative Care: A Scoping Review

Although health systems increasingly recognize the benefits of home-based palliative care, informal caregivers often lack adequate training and guidance to support terminally ill patients effectively. This underscores the need for comprehensive guidelines addressing pain and symptom management as well as patients' social, psychological, economic, and spiritual needs. This scoping review aimed to identify reliable guidelines to support informal home-based caregivers for patients cared for in home-based palliative care services.

A literature scoping review using Arksey and O'Malley's five-step process identified 1055 studies, excluding non-English publications, opinion pieces, and grey literature without full-texts. Of these, 58 articles were assessed for inclusion, focusing on informal caregivers supporting adults with advanced chronic conditions or in palliative care.

The review identified key themes in existing guidelines for home-based palliative caregivers, including recognition of palliative care as a fundamental human right. However, substantial inconsistencies were found in scope, depth, and content, with no standardized approach to guide essential care practices.

This review examined global literature on informal home-based caregiver support in palliative care, with relevance to Rwanda. Findings showed that available documents were largely policy-oriented and lacked detailed guidance on comprehensive care and clearly defined caregiver roles. Key priorities include integrating palliative care into health systems, recognizing it as a legal right, ensuring culturally appropriate home-based care, and strengthening caregiver support. Effective service delivery requires holistic approaches, defined team roles, harmonized care models, and ongoing monitoring to ensure sustainable, high-quality care.