Abstract
Patients’ expectations pre-treatment for cancer can impact on subsequent treatment experiences. The existing literature is conflicted about whether expectations should be positive or realistic, with some studies reporting expectations as predictors of experiences and some studies highlighting the expectations-experiences gap as more important. Research has been narrow in focus and there exists no broad measure of expectations. Clinical Nurse Specialists (CNSs) manage expectations, therefore their perspectives are important but are currently under-researched. This thesis aimed to explore patients’ expectations of cancer treatment more broadly, develop and validate new measures, and better understand CNSs’ perceptions. The thesis consists of six empirical studies. Study 1 qualitatively explored patients’ (n=16) expectations of cancer treatment. It highlighted a broader range of expectations than in the literature and suggested a role for the expectations-experiences gap. Study 2 designed two measures, validating them in a cross-sectional sample of cancer patients (n= 200). This produced a 39-item measure of expectations and a matched 36-item measure of experiences. Study 3 used the above sample to explore the expectations-experiences relationship and found that the expectations-experiences gap may be particularly important in a wide range of experiences. Study 4 measured expectations and experiences longitudinally but recruitment difficulties resulted in a case study of one cancer patient, which showed support for the findings from Study 3. Study 5 qualitatively explored CNSs’ (n=8) beliefs about patient expectations and found that CNSs believe balancing hope and honesty is the best approach to their management. Study 6 qualitatively explored CNSs’ (n=8) experiences of providing care and found that it was challenging but rewarding. This thesis contributes a broader understanding of patient expectations, facilitates their measurement and suggests that setting more realistic pre-treatment expectations is preferable. It shows that CNSs believe in balancing hope and honesty and that their roles are challenging but rewarding.