Describing meningococcal disease: understanding, perceptions and feelings of people in a regional area of NSW, Australia.

OBJECTIVES: To explore understanding, perceptions and feelings about meningococcal disease in members of higher risk groups. To explore what people say are the most important health messages and communication preferences about invasive meningococcal disease (IMD).

METHODS: Three focus groups and two semistructured interviews were conducted with people at higher risk of IMD in Hunter New England Local Health District in New South Wales.

RESULTS: Participants generally had a low understanding of IMD, but described intense feelings about the disease and empathy for those who had experienced the disease. Fear of stigma and the impact of stigma were identified. Participants identified reasons for delaying presentation for care as perceptions of invincibility (particularly among young people), the cost of care (for all groups), and racism (particularly for Aboriginal people). These issues were both potential and experienced barriers for participants accessing help when acutely unwell. Factors for effective communication to improve understanding of IMD included the communication being acceptable, accessible and appropriate.

CONCLUSIONS: IMD is a serious but uncommon disease that has a range of impacts on people, families and communities. Higher risk groups may benefit from receiving more appropriate and accessible information about early signs and symptoms of IMD. Communication and understanding about the disease could be improved by working with new technologies and partnering with key people in high-risk groups. Use of text messages and social networking for urgent communication could be considered and trialled in public health practice. It is also important to recognise the potential direct or indirect experience of racism and stigma for patients with IMD and their families. Management of IMD could be strengthened by connecting people and families with support groups or services to reduce the impact of the disease.