Investigation of the lived experiences and illness perceptions of adults with sudden onset neurological conditions

Abstract

Purpose: The systematic review summarised the literature on the impact of patient illness perceptions on health outcomes and coping after an acute neurological event, guided by Leventhal’s Self-Regulatory Model (SRM). The empirical study investigated individuals’ lived experiences of emotionalism, a sudden onset neurological disorder characterised by involuntary laughter and crying. A further aim was to develop a questionnaire measuring beliefs about emotionalism based on patients’ perspectives. Method: The review identified seventeen articles through database searches using predefined inclusion criteria. In the empirical paper, eighteen individuals took part in a qualitative study to explore their experiences of emotionalism. Results: Findings provided support for the SRM in acute neurological populations. Negative illness perceptions were associated with a range of poor health outcomes and unhelpful coping behaviours. The empirical paper provided rich individual accounts of the social and personal impact of emotionalism. Four themes were identified and used to develop a questionnaire measuring beliefs about emotionalism. Conclusions: Both chapters emphasise the value of eliciting patient beliefs about their neurological condition and of providing support at the early stages of recovery. The clinical implications and directions for future research were discussed as was the need for further validation of the questionnaire.