The role of illness representations in the process of coping and psychosocial adjustment among adults with epilepsy

The self-regulation model (Leventhal, Nerenz and Steele, 1984) emphasises the role of cognitive representations of illness and coping efforts on patients responses to health threats. In this thesis the relationships between illness representations, coping and psychosocial adjustment were investigated among 94 epilepsy patients. The sample comprised three groups; recently diagnosed, chronic (clinic) and chronic (GP) patients. An instrument was developed to assess patients cognitive representations of epilepsy. The protocol used yielded both qualitative and quantitative data. Both chronic (clinic) and recently diagnosed patients exhibited significant adjustment problems. In contrast, among chronic (GP) patients psychosocial adjustment was good. Differences in coping and illness representations were found between groups. Chronic (clinic) patients were distinguished by greater reliance on wishful thinking and avoidance coping. Avoidance coping strategies were least prevalent among chronic (GP) patients. In terms of illness representations, recent onset patients were characterised by, weaker illness identity, acute timeline and perceptions of less severe consequences. Chronic (clinic) patients were characterised by; a strong illness identity, chronic timeline, perception of serious consequences and high contamination beliefs. Chronic (GP) patients also possessed a strong illness identity and chronic time perception, but on the consequences and self-illness components more closely resembled recent onset patients. A series of multiple regression analyses indicated that illness representations explained a greater proportion of variance in; mental health, psychological distress, self-esteem and social anxiety than did the coping strategies after controlling for neuroepileptic factors. The illness representation component self-illness relationship had the strongest overall association with adjustment. Additional components making a significant contribution were; illness identity, timeline and control. There were several distinct relationships between illness representations and coping. Illness identity, blaming others, perception of serious consequences and negative self-illness appraisals were positively related to wishful thinking and avoidance coping. Among the four coping strategies assessed; avoidance,problem-focused and wishful thinking were related to adjustment. Seeking social support did not emerge as a significant predictor of adjustment. Patients with a strong illness identity, who perceived themselves as unable to contain the effects of epilepsy, utilised wishful thinking and avoidance coping emerged as having the poorest mental health and self-esteem. This thesis demonstrates the value of the self-regulation paradigm in understanding psychosocial adjustment to epilepsy. Results are discussed with respect to operationalizing the model to investigate epilepsy, the presence of both direct effects of illness representations on adjustment and indirect effects via coping. The implications for clinical intervention work are considered.