Table 2 Health related quality of life survey results
Part I. | ||||||
HRQoL Constructs & Items | Responses by Range of Days | |||||
General Emotional Health How many days during the past 30 days have you felt… | 0 to 5 days | 6 to 10 days | 11 to 15 days | 16 to 20 days | 21 to 25 days | 26 to 30 days |
 1.…stressed about your child’s health | 18 (34 %) | 11 (20.8 %) | 5 (9.4 %) | 2 (3.8 %) | 0 (0 %) | 17 (32.1 %) |
 2.…scared about your child’s health | 37 (69.8 %) | 6 (11.3 %) | 1 (1.9 %) | 0 (0 %) | 0 (0 %) | 9 (17 %) |
 3. …sad about your child’s health | 25 (47.2 %) | 8 (15.1 %) | 3 (5.7 %) | 2 (3.8 %) | 0 (0 %) | 15 (28.3 %) |
 4. …angry about your child’s health | 45 (84.9 %) | 3 (5.7 %) | 2 (3.8 %) | 0 (0 %) | 0 (0 %) | 3 (5.7 %) |
 5. …disappointed with my results when | 46 (86.8 %) | 3 (5.7 %) | 2 (3.8 %) | 0 (0 %) | 0 (0 %) | 2 (3.8 %) |
Respite Care How many days in the last 30 days… | ||||||
 6. …Was there someone to relieve you of your role of taking care of your child? | 25 (47.2 %) | 7 (13.2 %) | 2 (3.8 %) | 1 (1.9 %) | 0 (0 %) | 18 (34.0 %) |
Activity Limitation How many days during the past 30 days ….. | ||||||
 7. …Were you not able to do your usual activities because of stress, depression, and other emotional problems | 42 (79.2 %) | 4 (7.5 %) | 4 (7.5 %) | 0 (0 %) | 0 (0 %) | 3 (5.7 %) |
Part II. | ||||||
| Â | Ordinal Scaled Responses | |||||
HRQoL Constructs and Items | None of the time | A little of the time | Sometimes | Most of the time | All the time | |
Decision making | (1) | (2) | (3) | (4) | (5) | |
 1. I am able to make good decisions concerning healthcare options for my child | 0 (0 %) | 0 (0 %) | 1 (1.9 %) | 13 (24.5 %) | 39 (73.6 %) | |
 2. I am able to find a way to make sure that my child has healthcare specific to their needs | 0 (0 %) | 0 (0 %) | 5 (9.4 %) | 13 (24.5 %) | 35 (66.0 %) | |
 3. I receive correct information about my child’s condition or illness | 0 (0 %) | 1 (1.9 %) | 10 (18.9 %) | 11 (20.8 %) | 31 (58.5 %) | |
 4. I feel confident in my decision to manage my child’s health | 0 (0 %) | 0 (0 %) | 3 (5.7 %) | 14 (26.4 %) | 36 (67.9 %) | |
 5. I am satisfied with decisions made for my child’s healthcare needs after a doctor’s visit | 0 (0 %) | 1 (1.9 %) | 8 (15.1 %) | 19 (35.8 %) | 25 (47.2 %) | |
Social Support | ||||||
 6. I have someone I can talk to about my fears concerning my child’s health | 1 (1.9 %) | 2 (3.8 %) | 7 (13.2 %) | 5 (9.4 %) | 38 (71.7 %) | |
Interaction/Communication | ||||||
 7. I can explain my child’s need to my primary healthcare provider | 0 (0 %) | 2 (3.8 %) | 4 (7.5 %) | 11 (20.8 %) | 36 (67.9 %) | |
 8. I can understand the needs of my child from my primary healthcare provider | 0 (0 %) | 0 (0 %) | 4 (7.5 %) | 16 (30.2 %) | 33 (62.3 %) | |
 9. I am able to ask questions I may have about my child’s healthcare | 0 (0 %) | 0 (0 %) | 3 (5.7 %) | 7 (13.2 %) | 43 (81.1 %) | |
 10. My child has someone they can express themselves to when they are sad, angry, afraid, etc… | 9 (17.0 %) | 0 (0 %) | 3 (5.7 %) | 4 (7.5 %) | 37 (69.8 %) | |
Access to Resources | ||||||
I am able to obtain or have assistance in obtaining the following: | ||||||
 11. Medicine | 1 (1.9 %) | 0 (0 %) | 2 (3.8 %) | 6 (11.3 %) | 44 (83.0 %) | |
 12. Medical equipment | 0 (0 %) | 0 (0 %) | 6 (11.3 %) | 13 (24.5 %) | 34 (64.2 %) | |
 13. Housing and Utilities | 4 (7.5 %) | 0 (0 %) | 3 (5.7 %) | 4 (7.5 %) | 42 (79.2 %) | |
Child Health | ||||||
 14. I am able to understand the needs of my child | 0 (0 %) | 0 (0 %) | 3 (5.7 %) | 16 (30.2 %) | 34 (64.2 %) | |
 15. My child understands their condition | 29 (54.7 %) | 2 (3.8 %) | 7 (13.2 %) | 3 (5.7 %) | 12 (22.6 %) | |
 16. My child spends quality time with family and friends | 1 (1.9 %) | 0 (0 %) | 4 (7.5 %) | 5 (9.4 %) | 43 (81.1 %) | |
 17. My child is treated with dignity while receiving healthcare services | 0 (0 %) | 0 (0 %) | 1 (1.9 %) | 4 (7.5 %) | 48 (90.6 %) | |