Exploring the lived experience of loneliness and social isolation in informal palliative caregivers: A systematic review

Introduction: Loneliness and social isolation negatively affect an individual’s mental and physical health. Although there is literature exploring loneliness in informal caregivers and literature exploring the unique challenges of providing informal palliative care, there is no existing literature with an explicit focus on loneliness and social isolation in informal palliative caregivers. This systematic review aims to explore the experiences of loneliness and social isolation in informal palliative caregivers. Methods: The databases of CINAHL, Embase, PsycINFO and PubMed were searched on 23 October 2024. Qualitative literature that studied loneliness and/or social isolation in adult informal palliative and/or end-of-life caregivers was included. Quantitative and non-English language literature was excluded. The studies were screened, and the literature was analysed using thematic analysis. The included studies were critically appraised using the CASP Qualitative Studies Checklist. Results: Of all the articles screened, 28 were included in the review. The total number of participants across the studies was 505. Three overarching themes (with subthemes) were identified from the analysis. The themes were Caring is complex (19 studies), Lack of support (14 studies) and What helps (9 studies). Discussion: The challenging and unique experiences of providing palliative care can lead to or exacerbate feelings of loneliness and social isolation. Caregivers struggle with managing the demands of palliative care while having little support during the patient’s illness and after they have died. Social support and faith practices alleviated feelings of loneliness for some caregivers. The critical appraisal identified issues around ethical considerations and the researcher–participant relationship. Practitioners should support caregivers to develop meaningful occupations that allow for social connection.