Young people with Parkinson's disease: Report of a pilot study to identify the research issues and approaches to data collection:

摘要: Parkinson's disease (Pd) affects over 120,000 people in the UK. Onset usually begins 50 but a significant number of symptoms first develop at much earlier age without affecting life expectancy. A pilot study to explore quality life, psychological adjustment and service use for this population initially foundered because difficulties contacting sample younger with Pd motivating them participate. The was then extended determine these people's perceptions their condition needs through content analysis magazine circulated by user group, website. Information also sought from key informants working young Pd. This eventually resulted contact target collection valuable data participation conference held group. Reasons reluctance become involved traditional research studies related denial having Pd; desire conceal it fro...