Striking the right balance: a qualitative pilot study examining the role of information on the development of expectations in patients treated for head and neck cancer

The a priori aims of this study were, firstly, to investigate the types of expectations patients treated for head and neck cancer had prior to treatment and the extent to which these had been met post-treatment. Secondly, to investigate the role information played on the development of expectations. Semi-structured interviews were conducted with 15 patients. Data were analysed and classified using a Framework Analysis Approach. Expectations were subcategorized as either 'Specific' or 'Global'. 'Specific' expectations centred around: side effects of treatment; post-treatment aesthetics and the recovery process. 'Global' expectations centred around the whole cancer experience. A large proportion of patients described the whole experience as being much worse than they had anticipated. 'The role of information on expectations' was subcategorized into: 'too much' information, 'too little' information and the 'timing' of information. In conclusion, there were large variations in the types of expectations patients had, and between patients expectations and their actual experiences. Expectations appeared to be influenced by the information received and retained. Respondents emphasized the fine line between being given 'too much' information at the wrong time and 'not enough' information at the right time. This study has clear implications for reducing pre- and post-treatment uncertainty by supplying verbal and written information on a timely and individual basis, in order to reduce the mismatch between patient expectations and experiences.