Table 3 Support wishes according to open format answers (N = 275)
From: Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study
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 | |