Background
Methods
Survey elements
Recruitment
Development of recommendations
Results
Age | Respondents: patients n (%) | Respondents: carers n (%) | Total respondents: n (%) |
---|---|---|---|
18–24 | 61 (6.6) | 0 (0) | 61 (4.8) |
25–40 | 265 (28.5) | 144 (42.0) | 409 (32.1) |
41–60 | 452 (48.6) | 174 (50.7) | 626 (49.2) |
61+ | 147 (15.8) | 19 (5.5) | 166 (13.0) |
I’d prefer not to say | 5 (0.5) | 6 (1.7) | 11 (0.9) |
Total | 930 | 343 | 1273 |
Age of person cared for | Total n (%) |
---|---|
0–3 | 58 (16.9) |
4 to 11 | 122 (35.6) |
12 to 17 | 61 (17.8) |
18+ | 94 (27.4) |
I’d prefer not to say | 8 (2.3) |
Total | 343 |
The nature of the emotional impact
Feelings and emotions
Times that have had a negative impact on emotional health and wellbeing
Knock-on impact of poor mental health
Factors affecting mental health
Interactions with healthcare professionals and services
Everyday living with a rare condition
Additional factors for carers
Evaluation of care
Services, parity of esteem and information
Healthcare professionals asking about mental health
How to improve care to better support wellbeing and mental health
Experiences of professional psychological support
Access and barriers to professional psychological support services
Evaluation of professional psychological support
Support from other sources
Discussion
The nature of the emotional impact of rare disease
Factors affecting mental health
Practice implications based on our findings
Recommendations for the empowerment of healthcare professionals
-
demonstrate awareness of the challenges of living with a rare disease,
-
handle discussions about mental health sensitively.