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Self-perceived Burden for People With Life-threatening Illness: A Qualitative Systematic Review

Research output: Contribution to journalReview articlepeer-review

Asako Saji, Ai Oishi, Richard Harding

Original languageEnglish
JournalJournal of pain and symptom management
Early online date9 Nov 2022
Accepted/In press31 Oct 2022
E-pub ahead of print9 Nov 2022

Bibliographical note

Publisher Copyright: © 2022 American Academy of Hospice and Palliative Medicine

King's Authors


CONTEXT: 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".

OBJECTIVES: 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.

METHODS: 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.

RESULTS: Nine 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.

CONCLUSION: SPB 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.

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