The following is a summary of the “Self-perceived Burden for People With Life-threatening Illness: A Qualitative Systematic Reviews,” published in the March 2023 issue of Pain and Symptom Management by Saji, et al.

It’s a major worry for people with terminal illnesses that they’ll be seen as a burden on others. However, as a concept, “self-perceived burden” lacks clarity. Among adults facing a life-threatening illness, the researchers aim to appraise and integrate primary evidence supporting the concept of self-perceived burden (SPB) with regard to their informal carers.

This study is a meta-analysis and thematic synthesis of primary qualitative data. In September 2021, they scoured MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science, consulted hand-searched textbooks, web search engines, and peer-reviewed journals, and consulted with experts via email and telephone.

Studies of SPB from adults with life-limiting illnesses towards their informal carers were included if they provided primary data. The Critical Appraisal Skills Programme checklist was used to analyze the studies. The studies included 219 patients, the vast majority of whom were terminally ill and required physical assistance with their daily lives, and there were 9 total. SPB is a highly individual interpretation of changes in caregiving roles played by oneself and/or informal carers over time. Patients with SPB worry about being seen as a burden by their carers and have difficulty anticipating their needs.

However, patients’ reactions to SPB at the expense of their wishes may inadvertently increase their total suffering as it interacts with other factors of surrounding complex balances (such as care needs, reality, and identity), which would change over time. Contrary to popular belief, SPB is not a fixed idea but rather a dynamic, multifaceted “process” founded on apprehension. Better balancing of care requires more nuanced understandings and subsequent interventions.

Source: sciencedirect.com/science/article/abs/pii/S0885392422009551