Explore the social impact on the lives of those living with PPMS.
Explore the perceptions of who are the „real‟ experts for those living with PPMS, their
families, carers, and support networks.
Explore available information on dying for those living with PPMS.A
recent conference entitled „Joint Conference on Primary –
Progressive MS focuses on
unmet needs‟ which took place
in Dallas Texas USA in 2008, found,
“The number one issue identified
by everyone was a serious lack of information about thisform of MS. People with PPMS and their families asked for more informatio
n of every sort”,
(Schneider, 2008, p62).
Those who take part in the study will do so from within a contextual framework mostsuited to them. The researcher aims to minimize any disturbance to the participants byvisiting them at locations most convenient to them. It is also envisioned that visits would bemade at a time when members of their care teams are present this would enable theresearcher to conduct Delphi interviewing with the care team and those with PPMS as agroup, this will be looked at later in the proposal
Women are more likely them men to develop MS. However 50% of men with MS willdevelop PPMS, tend to have more significant symptoms and tend to be more disabled.Figure 1. Below gives an epidemiological over view of the number of people with MS acrossEurope. (Source atlasofms.org)