Table 3.
Comparative Analysis of Caregiving Experiences: LLRD Children’s Caregivers vs. PKU Children’s Caregivers.
| Items | 1. Very Bad/ or Never |
2. Rather Bad/ or Rarely |
3. Neither Good Nor Bad/I Do Not Know/ or Sometimes |
4. Rather Good/ or Often |
5. Very Good/ or Always |
p |
|---|---|---|---|---|---|---|
| Impact on Personal Life | ||||||
| Does caring for an RD child make you experience any of the following emotional states? | ||||||
| 1. emotional control problem | <0.001 | |||||
| LLRD children’s caregivers | 7.1% | 20.8% | 34.9% | 30.1% | 7.1% | |
| PKU children’s caregivers | 14.8% | 33.1% | 30.8% | 18.3% | 2.8% | |
| 2. sense of shame | <0.001 | |||||
| LLRD children’s caregivers | 49.5% | 27% | 14.2% | 6.6% | 2.6% | |
| PKU children’s caregivers | 77.7% | 12% | 5.1% | 4% | 1.1% | |
| 3. nervousness/impulsivity | <0.001 | |||||
| LLRD children’s caregivers | 8% | 13.7% | 36.7% | 34.1% | 7.5% | |
| PKU children’s caregivers | 12.6% | 29.7% | 30.3% | 23.4% | 4% | |
| 4. emotional lability | <0.001 | |||||
| LLRD children’s caregivers | 6.2% | 13.3% | 33.2% | 38.9% | 8.4% | |
| PKU children’s caregivers | 16% | 22.9% | 34.3% | 22.8% | 4% | |
| 5. impatience/irritation | <0.001 | |||||
| LLRD children’s caregivers | 5.3% | 14.1% | 33.2% | 38.5% | 8.9% | |
| PKU children’s caregivers | 13.1% | 21.1% | 36.6% | 25.1% | 4% | |
| Conflict and Fulfillment of Needs | ||||||
| 6. Has the role of caregiver forced you to give up your own passions, hobbies, and plans? | <0.001 | |||||
| LLRD children’s caregivers | 2.6% | 13.3% | 25.2% | 40.3% | 18.6% | |
| PKU children’s caregivers | 16.6% | 29.7% | 22.9% | 22.9% | 8% | |
| 7. Do you experience conflict between your own needs and those of your RD child? | <0.001 | |||||
| LLRD children’s caregivers | 10.2% | 23% | 30.5% | 28.8% | 7.5% | |
| PKU children’s caregivers | 37.1% | 29.7% | 18.8% | 9.7% | 4.6% | |
| 8. Does caregiving make it difficult to fulfill other roles, i.e., parent/spouse/employee? | <0.001 | |||||
| LLRD children’s caregivers | 10.6% | 19.5 | 31% | 28.8% | 10.2% | |
| PKU children’s caregivers | 32.6% | 25.1% | 21.7% | 14.3% | 6.3% | |
| 9. Do you have time to pursue your passions/hobbies? | <0.001 | |||||
| LLRD children’s caregivers | 19% | 23.9% | 35.8% | 15.5% | 5.7% | |
| PKU children’s caregivers | 25.1% | 26.3% | 30.3% | 13.7% | 4.6% | |
| 10. Do you have the feeling that your needs are unimportant to others? | <0.001 | |||||
| LLRD children’s caregivers | 8% | 16.8% | 30.1% | 33.6% | 11.5% | |
| PKU children’s caregivers | 20% | 26.3% | 24.6% | 19.4% | 9.7% | |
| Physician and Healthcare Support | ||||||
| 11. Support caregivers receive from physicians | <0.001 | |||||
| LLRD children’s caregivers | 15.5% | 34.5% | 13.3% | 29.2% | 7.5% | |
| PKU children’s caregivers | 6.3% | 10.8% | 19.4% | 46.8% | 16.6% | |
| 12. Physicians’ empathy | <0.001 | |||||
| LLRD children’s caregivers | 9.3% | 28.8% | 8.4% | 42% | 11.5% | |
| PKU children’s caregivers | 4.6% | 9.1% | 16.6% | 52.6% | 17.1% | |
| 13. Access to financial help with rehabilitation for RD children | <0.001 | |||||
| LLRD children’s caregivers | 35.4% | 35% | 10.2% | 16.8% | 2.6% | |
| PKU children’s caregivers | 13.7% | 25.1% | 39.4% | 18.3% | 3.4% | |
| 14. Support for RD children and caregivers from healthcare professionals | <0.001 | |||||
| LLRD children’s caregivers | 17.3% | 35.4% | 8.8% | 31% | 7.5% | |
| PKU children’s caregivers | 6.3% | 18.8% | 15.4% | 48% | 11.4% | |
| 15. Physicians’ practical information about RD | <0.001 | |||||
| LLRD children’s caregivers | 17.3% | 28.3% | 9.7% | 35.8% | 8.9% | |
| PKU children’s caregivers | 3.4% | 9.1% | 11.4% | 46.9 | 29.1% | |
| Family Dynamics and Social Support | ||||||
| 16. Do you feel supported by your family and loved ones? | ns | |||||
| LLRD children’s caregivers | 4% | 11.1% | 19.9% | 31% | 34% | |
| PKU children’s caregivers | 3.4% | 13.7% | 15.4% | 24.6 | 42.9% | |
| 17. I can count on practical help from my relatives/friends | ns | |||||
| LLRD children’s caregivers | 26.1% | 28.8% | 25.2% | 10.2% | 9.7% | |
| PKU children’s caregivers | 26.8% | 24% | 23.4% | 11.4% | 14.3% | |
| 18. I can count on practical help from my family | ns | |||||
| LLRD children’s caregivers | 18.6% | 21.7% | 25.7% | 16.4% | 17.7% | |
| PKU children’s caregivers | 22.8% | 17.7% | 21.1% | 17.7% | 20.6% | |
| 19. I can count on emotional support from my family | ns | |||||
| LLRD children’s caregivers | 4% | 11.1% | 19.9% | 31% | 34% | |
| PKU children’s caregivers | 3.4% | 13.7% | 15.4% | 24.6% | 42.9% | |
| 20. I experience conflict in my family | <0.001 | |||||
| LLRD children’s caregivers | 31% | 21.2% | 30.1% | 14.6% | 3.1% | |
| PKU children’s caregivers | 50.9% | 22.3% | 16% | 9.7% | 1.1% | |
| Financial Challenges and Medication Concerns | ||||||
| 21. Are you worried about your family’s finances? | ns | |||||
| LLRD children’s caregivers | 6.6% | 12.8% | 32.7% | 23.4% | 24.3% | |
| PKU children’s caregivers | 6.3% | 12% | 32% | 26.3% | 23.4% | |
| 22. Is the cost of medicines and medical care a heavy burden for you? | <0.05 | |||||
| LLRD children’s caregivers | 9.3% | 14.6% | 23.9% | 28.8% | 23.4% | |
| PKU children’s caregivers | 14.9% | 16% | 27.4% | 26.3% | 15.4% | |
| 23. How do you assess your financial situation? | ns | |||||
| LLRD children’s caregivers | 4.9% | 18.6% | 14.1% | 56.2% | 6.2% | |
| PKU children’s caregivers | 5.1% | 16.6% | 20.6% | 50.3% | 7.4% | |
| 24. Do you experience problems with the reimbursement or purchase of medicines? | <0.05 | |||||
| LLRD children’s caregivers | 19.9% | 26.5% | 13.7% | 35.4% | 4.4% | |
| PKU children’s caregivers | 6.9% | 24% | 10.8% | 52.6% | 5.7% | |
| 25. Contacts with the healthcare system | <0.001 | |||||
| LLRD children’s caregivers | 2.6% | 16.8% | 31.9% | 27.8% | 20.8% | |
| PKU children’s caregivers | 14.3% | 33.7% | 26.9% | 14.3% | 10.8% | |
ns—not significant.