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

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".

OBJECTIVE: To appraise and integrate primary evidence underpinning the concept of self-perceived burden 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) self-perceived burden 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. Self-perceived burden is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop self-perceived burden feeling uncertain about caregivers' perceptions and increasing future burden. Self-perceived burden interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients' reactions to self-perceived burden at the sacrifice of their wishes may conversely increase the total suffering.

CONCLUSION: Self-perceived burden 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.