Beliefs about stroke: negotiating shared understandings

Studies suggest that the illness perceptions that individuals develop can affect their psychosocial adjustment, and that patients and carers may hold differing views about the illness. This 'discrepancy' in their views has been found to be predictive ofa range of negative
psychosocial outcomes. However, little is known about the illness perceptions of stroke patients and carers, so this study takes a longitudinal approach to examine the influence of discrepant illness perceptions on the psychological adjustment of both partners.
Aims: This thesis aims a) to examine the illness perceptions of patients and their carers;
b) to examine the relationship between discrepant illness perceptions and emotional distress for
both partners; c) to understand how couples negotiate a shared understanding of the stroke and
how discrepant illness perceptions manifest in this process.
Method and Results
Study 1: Using Leventhal's self-regulatory model (Leventhal, 1980) as a framework, the illness perceptions, social support and relationship satisfaction of 42 stroke patients and their carers were examined approximately 3,6 and 9 months post stroke. Emotional distress was
assessed using the General Health Questionnaire. Discrepancy was common, with almost a quarter of couples classified as discrepant at time 1. Multilevel modelling was used to examine the utility of illness perceptions and discrepancy as predictors of patient and carer distress.
Illness representations were found to be associated with concurrent distress, but not a good predictor of later distress. Discrepant illness perceptions were associated with increased distress for both partners.
Study 2: A qualitative study investigated how couples negotiate a way of adapting to the stroke over time. Data was collected from 16 couples using semi-structured interviews, and analysed using Interpretative Phenomenological Analysis. Four themes emerged: entering an
altered world, getting back to normal, the negotiation process and/actors affecting the negotiation process. Negotiation and adjustment styles varied across couples and each partner's illness beliefs played an important role in how the negotiation process was enacted by couples.
Discussion: The results suggest that although discrepancy is not a good predictor of later distress, it nonetheless affects the relationship between partners and this placed an
additional burden on couples as they try to adjust to the stroke. The results of this research shows that significantly greater emphasis need to be placed on the dyad and the role of the dyadic relationship in order to help couples manage the impact of stroke and minimise its
intrusion into their everyday lives.