Inclusion of informal caregivers in the palliative and end-of-life care of older adults: a scoping review protocol

INTRODUCTION: Palliative and end-of-life (EOL) care will increasingly be required in years to come as a result of an ageing population. An important component of this type of care is the inclusion of informal caregivers, who are family members or friends offering unpaid assistance to older adults with a terminal illness. Although systematic reviews were conducted on topics related to the inclusion of informal caregivers in the palliative and EOL care of older adults, several gaps remain as they were specific to a health condition and/or setting. The purpose of our scoping review is to map the extent of knowledge on this subject. METHODS AND ANALYSIS: We will conduct our scoping review following Levac’s methodology. We will gather publications of various types through nine databases, manual searches in journals and search engines and reference lists. The selection process will be conducted by two independent reviewers and consist of screening by title and abstract, followed by reading the full text to confirm eligibility. An independent reviewer will then extract data and assess quality from included publications. Data extracted from different publication types will be synthesised together in the Excel software using a content analysis method, with quantitative data transformed into a qualitative description. Results will be presented through descriptive statistics and themes. During different steps of the review, we will also consult informal caregivers and health professionals for feedback as stakeholders. ETHICS AND DISSEMINATION: The conduction of this scoping review requires no ethical approval. Results will provide an overview of the state of knowledge on the inclusion of informal caregivers in palliative and EOL of older adults, which could help guide clinical practice, the development of interventions and policy and further research. We will disseminate these results by publishing an article, presenting in conferences, and discussing findings with stakeholders.