Information-seeking behaviour among people with motor neurone disease

This qualitative study employed indepth, semistructured audiotaped interviews with seven people with motor neurone disease (MND) to explore their desire for information about MND and their experiences in seeking and obtaining such information. Factors affecting their information-seeking behaviour were identified through a process of interpretative phenomenological analysis. Three distinct information-seeking categories emerged. Active seekers personally acquired information from a variety of sources. Selective seekers had access to information but often relied on 'buffers' to filter out unsuitable material. Information avoiders almost always used a 'buffer' to pre-screen any information to which they were exposed. All participants described negative effects on being exposed to unsolicited information, often in the form of media coverage. This work highlights the impact of unsolicited information on people with MND, an area not previously studied.