Self-perceived burden in cancer patients : a multi-method approach

Abstract

Patients’ perception of being a burden to others, termed self-perceived burden (SPB), is a phenomenon commonly reported by terminally-ill patients. SPB elicits psychological outcomes such as loss of dignity, hopelessness, anxiety, and depression (Wilson et al., 2005). To extend our knowledge on this understudied construct, this project employed a multi-method approach with three studies to examine the experience of SPB among Chinese cancer patients.

Study 1 is the first longitudinal investigation on the relationship between SPB and non-terminal cancer patients’ trajectories of psychological adjustment. Results from hierarchical linear modeling showed that patients with higher levels of SPB reported higher levels of depression and anxiety, as well as lower levels of mental health over time. Results also revealed that SPB predicted cancer patients’ pattern of change in anxiety over time. As the high SPB group had a higher anxiety level at baseline, their anxiety level remained higher than that of the low SPB group despite a sharper decrease.

Study 2 is the first quantitative study to scrutinize the psychological process of how cancer patients attempted to cope with SPB. A new Self-perceived Burden Coping Scale was developed. Our findings indicated that the scale displayed good content, construct, and discriminant validities, and most subscales show acceptable reliability. Results from principal components analysis showed that cancer patients adopted six coping modes in an attempt to deal with SPB: (a) positive outlook, (b) managing the needs of others, (c) resigned acceptance, (d) making preparations, (e) entitlement, and (f) concealing need. Specially, the coping modes of resigned acceptance and concealing need were related to poorer adjustment, whereas managing the needs of others and entitlement were related to better adjustment. Stress-buffering effects of managing the needs of others and making preparations were also found.

Finally, Study 3 adopted a qualitative paradigm to explore perception as care-receivers, aspects of SPB, and coping with SPB among Chinese non-terminal cancer patients. Narratives from patients revealed four perspectives regarding to their perception as care-receivers: self-reliance, acceptance, overwhelming, and SPB. Results revealed that the SPB experience among Chinese non-terminal cancer patients was similar to those observed in Western terminal cancer patients, with a new aspect of financial burden. In addition to the six coping modes of SPB found in Study 2, a potential new coping mode of being compliant with others was found, which may be unique among Chinese cancer patients in the context of SPB. Findings from these studies may advance our knowledge on SPB, provide insights for future research, as well as shed lights on the development of counseling services, psychological interventions, and public policies for cancer patients.