Table 1 Characteristics of participants
Methods | Participant | Disease or type of profession | number | Age | Gender |
|---|---|---|---|---|---|
Interview | Patients | Multiple sclerosis (MS) | 4 | 36–67 | 2F, 2 M |
N = 20 | N = 11 | Parkinson’s disease (PD) | 4 | 69–82 | F, 3 M |
Atypical Parkinsonism (AP) | 3 | 68–73 | 2F, M | ||
Family members | Multiple sclerosis (MS) | 2 | 36–82 | 2F | |
N = 6 | Parkinson’s disease (PD) | 3 | 51–69 | 2F,M | |
Huntington’s disease (HD) | 1 | 69 | F | ||
Professionals | Medical doctor – neurologist | 1 | 42 | F | |
N = 3 | Social worker for neurology clinic | 1 | 48 | F | |
Nurse – care for patients with HD | 1 | 41 | F | ||
Focus groups | Professionals | Medical doctor – neurologist | 3 | 41–64 | F, 2 M |
N = 4 | N = 32 | Medical doctor – palliative medicine | 1 | 57 | F |
Medical doctor – rehabilitation | 1 | 54 | F | ||
Nurse – long term care | 4 | 29–58 | 4 F | ||
Nurse – hospital | 4 | 29–64 | 4 F | ||
Nurse – community care, ambulance | 7 | 27–42 | 7 F | ||
Physiotherapist | 3 | 26–45 | 3 F | ||
Ergotherapist | 2 | 29–39 | 2 F | ||
Social worker | 3 | 41–42 | 3 F | ||
Psychologist | 2 | 35–40 | 2 F | ||
Hospital chaplain | 2 | 45–68 | 2 M |