Change in psychological distress in oesophageal cancer carers and associations with changes in illness perceptions

Abstract

Background: Carers of people with cancer are often referred to as “secondary survivorsâ€, reporting equivalent levels of psychological morbidity to survivors, but there is a relative dearth of attention given to the psychological sequelae from caregiving. Illness perceptions have been shown to be related to psychological distress among people with a range of physical health conditions, but there is less research that examines the role of illness perceptions on psychological outcomes for carers. This study aimed to examine levels of distress in family carers of oesophageal cancer survivors, and the role of illness perception schemas as a correlate of change in distress over time. Methods: Oesophageal cancer carers (n=171) were assessed at two time points, 12-months apart with the Illness Perception Questionnaire-Revised, Cancer Coping Questionnaire, Hospital Anxiety and Depression Scale and Concerns About Recurrence Scale. Findings: Findings report deterioration from normal to probable anxiety in 35.7% of carers and probable depression in 28.7% carers over time. Fear of recurrence remained stable. Changes in control, consequence and cause beliefs were identified as key correlates of a change in psychological morbidity. Discussion: This study indicates that psychological wellbeing in a sizeable proportion of oesophageal cancer carers deteriorates over time. Illness perception schema have been identified as a key determinant of this change, with enhancing control beliefs, lessening focus on illness cause, and setting realistic expectations for consequences as important elements. These illness perceptions appear to be valuable targets for psychological intervention to improve wellbeing among carers of people with oesophageal cancer.