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The perception of being a burden to others is a significant concern for people with life-threatening illness. It is unclear what underpins the concept of “self-perceived burden”.

To appraise and integrate primary evidence underpinning the concept of self-perceived burden (SPB) with respect to their informal caregivers among adult patients with life-threatening illness.

This is a systematic review and a thematic synthesis of qualitative primary data. MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science were searched in September 2021, supplemented by hand searching of textbooks and web search engines, peer-review journals, and contact with experts. Qualitative studies were included if they provided primary data of adult patients’ (with life-limiting illness) SPB toward their informal caregivers. Studies were appraised using the Critical Appraisal Skills Programme checklist.

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