Making sense of chronic pain among people who have had encephalitis and developing service support that meets their needs

The study, funded by the Big Lottery, and undertaken in collaboration with the Encephalitis Society aims to enhance quality of life and addresses social exclusion for people who have had encephalitis and their families. Encephalitis is a serious neurological illness. Yet we know little about how people and their families cope with and make sense of the illness; nor how services can best support them. Previous work has tended to have a clinical focus and there is a dearth of literature that considers the social consequences and the impact of the condition on people’s lives.

The project is in three stages. First, a postal questionnaire will be sent to people who have had encephalitis. Using standardised instruments such as the SF36 (a quality of life measure) and questions to elicit a person’s perception of pain and its impact on their life, this stage of the research will provide quantifiable information on the social experience of encephalitis. Second, qualitative work, using semi-structured interviews, will explore in more detail the experience of those affected by encephalitis, their family carers and health and social care professionals involved in their care. Third, the project will develop material and engage in dissemination activity to help practitioners better support those affected by encephalitis as well as enable and empower those with the condition and their families to articulate their needs to health and social care agencies.