Patient and partner perceptions of the patient's cancer: is discrepancy important?

Background: Research suggests that illness perceptions influence psychosocial outcomes across a range of chronic illnesses, including cancer. Such research traditionally takes an individualistic perspective, focusing on the patient. However, family members, in particular partners, play a crucial role in chronic illness and should be considered when examining adjustment. Partners also form illness perceptions about their partner’s illness, which may differ from the patient’s views, and some studies have found that such ‘discrepancy’ can be associated with negative psychosocial outcomes. However, the research in this area has produced mixed results and many studies neglect partner outcomes. Furthermore, there is little research exploring how perceptions evolve and are negotiated in couples. Aims: A quantitative study primarily aimed to examine associations between discrepancy in illness perceptions and quality of life in couples facing cancer, addressing limitations in previous research. A qualitative study aimed to develop understanding of how differences or similarities in perceptions develop and are negotiated in couples, and the role of discrepant perceptions within the adjustment process. Method: Thirteen couples completed questionnaires assessing their illness perceptions and health-related quality of life. This sample size was much smaller than anticipated due to recruitment difficulties and therefore the quantitative aims were not realised. For the qualitative study, six of the couples were interviewed both jointly and individually, with their data being analysed using the Voice-centred Relational Method and Interpretative Phenomenological Analysis. Results: Case studies highlighted that the evolution of couples’ understandings of the cancer was complex and idiosyncratic. Five group level themes were developed: unique roles and needs; in it together; outside influences; negotiations; and how we are left. These themes highlighted that couples balanced various complementary and competing perceptions that arose from the influence of numerous factors both within and outside the couple relationship. Balancing these multiple understandings required the use of various negotiation processes and attempts at negotiations varied in their ability to obtain a satisfactory resolution. Discrepancy was experienced both positively and negatively by the couples. Discussion: The recruitment difficulties that prevented some of the research aims being addressed are discussed. The qualitative findings are discussed in relation to the wider literature and clinical implications highlighted. Overall, the study highlights the importance of including partners in care provision and supports a relationship-centred approach to cancer.