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”. 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.