TABLE 2.
Parental coping and social media usage
| Median DASS depression score (n = 29) | 8 [IQR 2‐19, range 0‐31] | |
| Normal (0‐9) | n/% | 15/51.7 |
| Mild (10‐13) | 3/10.3 | |
| Moderate (14‐20) | 7/24.1 | |
| Severe (21‐27) | 2/22.2 | |
| Extremely severe (>27) | 2/22.2 | |
| Median DASS anxiety score (n = 29) | 4 [IQR 0‐10, range 0‐21] | |
| Normal (0‐7) | n/% | 17/58.6 |
| Mild (8‐9) | 5/17.2 | |
| Moderate (10‐14) | 4/13.8 | |
| Severe (15‐19) | 2/6.9 | |
| Extremely severe (>19) | 1/11.1 | |
| Median DASS stress score (n = 29) | 11 [IQR 5‐19, range 0‐39] | |
| Normal (0‐14) | n/% | 17/58.6 |
| Mild (15‐18) | 4/13.8 | |
| Moderate (19‐25) | 6/20.7 | |
| Severe (26‐33) | 1/11.1 | |
| Extremely severe (>33) | 1/11.1 | |
| Median impact of FIRES group with copinga (n = 26) | 7 [IQR 5‐9.25, range 1‐10] | |
| Median impact of FIRES group with parentinga (n = 22) | 5.5 [IQR 2.75‐8.25, range 1‐10] | |
| Desire for physician participation in FIRES group (n = 27) | n/% | |
| Yes | 18/66.7 | |
| No | 2/7.4 | |
| Unsure | 7/25.9 | |
| Ways the FIRES group has changed care for childb (n = 27) | ||
| It has not changed | 13/48.1 | |
| Started or stopped a medication/diet | 7/25.9 | |
| Redirected goals of care | 4/14.8 | |
| Obtained a new test | 5/18.5 | |
| Joined a research study | 7/25.9 | |
| Changed physicians | 2/7.4 | |
| Other | 3/11.1 | |
| Ways the FIRES group has changed copingb (n = 24) | ||
| It has not changed | 3/12.5 | |
| I've socialized in person with members | 3/12.5 | |
| I feel like I help other families | 11/41.7 | |
| I feel like other families help me | 12/50.0 | |
| My stress levels are lower | 4/16.7 | |
| My stress levels are higher | 1/4.2 | |
| I was more hopeful for the future | 5/20.8 | |
| I was less hopeful for the future | 0/0.0 | |
| I was more acceptant of reality | 13/54.1 | |
| Other | 3/12.5 | |
a
1 = not helpful, 10 = most helpful.
b
Answers not mutually exclusive.