Table 2.
Support resources and support needs.
| Caregivers (N = 141) | Former caregivers (N = 15) | |
|---|---|---|
| Received support (%) | ||
| I received support/advice via newsletter or websites (i.e., Parkinson Association, ParkinsonNet) | 54 (38.3) | 5 (33.3) |
| I received support/advice from my direct environment (i.e., family, friends, neighbors | 44 (31.2) | 8 (53.3) |
| I received support/advice via book(s) | 32 (22.7) | 4 (26.7) |
| I did not (yet) receive support or advice | 43 (30.5) | 3 (20.2) |
| I received support/advice from other informal caregivers during a group meeting (i.e. Parkinson Café) | 22 (15.6) | 5 (33.3) |
| I received support/advice from other informal caregivers, through individual contact (i.e., in personal-contact, online community, forum) | 12 (8.5) | 1 (6.7) |
| Topics for additional support (%) | 70 (49.6) | n/a |
| Finding balance between caring for the person with PD and caring for myself | 62 (44.0) | n/a |
| How I as an informal caregiver can recognized signals (e.g. depression, dementia, hallucinations) in the person I care for | 59 (41.8) | n/a |
| Learning to communicate based on your own needs and wishes | 54 (38.3) | n/a |
| Dealing with psychosocial consequences (e.g., anxiety, depression) in PD | 37 (26.2) | n/a |
| Dealing with a changing relationship with the person with PD | 36 (25.5) | n/a |
| Taking care of myself as a caregiver | 35 (24.8) | n/a |
| Information about how to receive social and/or financial support | 33 (23.4) | n/a |
| Developing skills for dealing with stress (situations) | 28 (19.9) | n/a |
| Information about PD and treatment | 28 (19.9) | n/a |
| Dealing with changing relations and reactions from the environment | 27 (19.1) | n/a |
| Information about possible strategies for dealing with stress | 25 (17.7) | n/a |
| Accepting my own/new role as an informal caregiver | 21 (14.9) | n/a |
| Other | 30 (21.3) | n/a |
| Willing to share experience as peers (%) | 71 (50.4) | 13 (86.7) |