• Asako Saji, Ai Oishi, and Richard Harding.
• Yokohama-shi Kotobuki-cho Kenko Fukushi Koryu Center Clinic (A.S.), Kanagawa, Japan. Electronic address: you-gonna-be@kki.biglobe.ne.jp.
• J Pain Symptom Manage. 2023 Mar 1; 65 (3): e207e217e207-e217.

ContextThe 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".ObjectivesTo 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.MethodsThis 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.ResultsNine studies were included, reporting on 219 patients who mostly had advanced life-threatening illness and needed physical assistance for daily activities. SPB is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop SPB feeling uncertain about caregivers' perceptions and increasing future burden. SPB interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients' reactions to SPB at the sacrifice of their wishes may conversely increase the total suffering.ConclusionSPB is not a static perception but a fluctuating and complex 'process' based on uncertainty. More diverse understandings and following interventions to achieve a better balance of care should be sought.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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