Table 3.
Support wishes according to open format answers (N = 275)
| Wishes regarding… | Total number of mentions | |
|---|---|---|
| Health system and information needs | ||
| Healthcare and information | 277 | |
| Facilitated access to experts and treatment | 49 | |
| Information transfer for the patients | 28 | |
| More support by funding agencies | 27 | |
| Psychotherapy | 23 | |
| Better informed physicians | 23 | |
| Adequate and best possible medical care | 21 | |
| Information transfer for others | 13 | |
| Improved/ facilitated cooperation between different healthcare providers | 13 | |
| Assistance in bureaucratic procedures | 11 | |
| Guidance and consultation | 9 | |
| Rehabilitation interventions | 6 | |
| More research | 6 | |
| Pain therapy | 4 | |
| Physiotherapy | 4 | |
| Support for relatives | 3 | |
| Alternative treatments | 2 | |
| Other treatment measures | 2 | |
| Euthanasia | 2 | |
| Patient care and support needs | ||
| More personable physicians | 28 | |
| Being more involved in treatment decisions | 3 | |
| Psychological Needs | ||
| Coping strategies | 4 | |
| Learning disease management strategies | 3 | |
| Learning emotion regulation strategies | 1 | |
| Social/emotional support | 77 | |
| Inclusion/more tolerance and acceptance in society | 31 | |
| Social and emotional support | 22 | |
| Contact to peers with the same disease/ self-help | 20 | |
| Social belonging/ participation | 4 | |
| Physical and daily living needs | ||
| Support in daily life | 53 | |
| Support for everyday life tasks | 25 | |
| Job-related facilitations | 12 | |
| Assistive technology | 11 | |
| Increased disease-specific leisure opportunities | 5 | |
| Other | ||
| A symptom-free status/ cure | 8 | |
| No specific support wishes | 29 | |
| Uncertainty about support wishes | 12 | |
| Sufficient support available | 12 | |
| Unspecific support wishes | 5 | |