gms | German Medical Science

Model/Framework: No studies are available on how people live with an advanced phase of Morbus Parkinson (Hoehn & Yahr stage 4 or higher) in nursing homes in Salzburg. Which care demands these residents and their relatives have and how they cope with medical and care demands are the research questions of our explorative study.

Methods: The authors have included 8 “units of care”: residents and their caring family members. A mixed-Methods Approach was used: with quantitative, validated assessments instruments the researchers evaluated the correct illness stage and scores were being risen. In a second part, ethnographic interviews with residents and family-members were being conducted.

Results: From 17 residents, formally matching our inclusion criteria, 7 patients had to be withdrawn as they were misdiagnosed. The validated tools could not describe residents’ situations as anticipated. Doing ethnographic family interviews worked out well, residents seemed to enjoy having a break from the nursing-home-routine. In the 5 ethnographic interviews 3 major topics emerged: being in charge and having to organize medical care, worrying about deterioration and having positive wishes for the residents’ future.

Conclusions: This study is the first empirical data-base on Parkinson patients in an advanced illness phase in Salzburg and the Salzburg country. Although the 8 residents in our study were extremely reduced in their independency, they did not suffer. 7 from 8 were content with their personal situation and the care they received. The residents’ symptom burden was much smaller than the researchers anticipated.