Table 2 Psychosocial impact of living with SMA
Psychosocial impact of SMA | PWSMA N = 13 (%) | Caregivers of PWSMA N = 29 (%) |
|---|---|---|
Mental health | ||
Feel stressed | 7 (54) | 16 (55) |
Feel depressed | 5 (38) | 6 (21) |
Feel anxious | 5 (38) | 22 (76) |
Feel socially isolated | 4 (31) | 3 (10) |
Lack independence | 6 (46) | 8 (27) |
Physical issues | ||
Lack mobility independence | 7 (54) | 24 (83) |
Unable to transfer | 7 (54) | 17 (59) |
Limited physical activities | 7 (54) | 16 (55) |
Unable to go to toilet oneself | 6 (46) | 15 (52) |
Unable to turn in bed | 5 (38) | 11 (38) |
Unable to care for personal hygiene | 4 (31) | 15 (52) |
Unable to dress self | 4 (31) | 11 (38) |
Unable to feed oneself | 3 (23) | 5 (17) |
Psychosocial impact | ||
Lost job | 2 (15) | 4 (14) |
Troubled relationships | 3 (23) | 2 (7) |
Disruption to career/education | ||
Unable to attend work/school | 4 (31) | 8 (28) |
Diminished social activities | 4 (31) | 6 (21) |