Relevance and consequence of economic and social resources of severely ill persons and their informal caregivers at the end-of-life: a systematic review of qualitative studies

Abstract Background Life-limiting illnesses often lead to complex care needs and multifaceted support requirements for both severely ill persons and their informal caregivers, particularly at the end of life. The extent to which these needs are met may be significantly influenced by available economic and social resources. However, an in-depth understanding of how such resources shape end-of-life experiences is still missing. Therefore, our systematic review of qualitative studies aimed to explore and understand the perceptions of severely ill persons at the end of life and their informal caregivers regarding the relevance and consequences of their economic and social resources in varying settings of high-income countries. Methods We followed the PRISMA guideline and searched MEDLINE via PubMed, CINAHL and PsychInfo from inception, which means the earliest available records in each database to October 2025. In addition, we searched reference lists of relevant studies. Three authors (DB, GM, MM) extracted the data, and four authors (DB, GM, FO, MM) assessed study quality using the JBI Critical Appraisal Checklist for Qualitative Research. The ratings were verified through mutual double checks. Any discrepancies were resolved through discussion with EB. We synthesized the data using qualitative content analysis according to Schreier. Results In total, we included 20 studies reporting on various economic and social resources, which were sometimes interdependent. In the overarching category of economic resources, we identified three subcategories: (1) savings and assets, (2) workplace resources of informal caregivers, and (3) state support and insurance. The identified social resources could be structured into four subcategories according to House’s Social Support Theory: emotional support, appraisal support, instrumental support, and informational support. Conclusions Severely ill persons and their informal caregivers face major emotional, practical, and organizational challenges at the end of life, and the extent of their burden is closely linked to available economic and social resources. Informal caregivers, who both provide and need support, require targeted professional and peer interventions to manage these demands and protect their well-being. Compassionate Communities appear to be a possible approach to reducing psychological burden, social isolation, and caregiver overload.