Table 4 Family impacts reported by caregivers, prior to the pabinafusp alfa trial
Family impact concepts | Caregiver descriptions prior to trial |
|---|---|
Caregiver stress (n = 6) | Life is centered on the child’s treatment/care, food preparation, difficulty controlling seizures, and helping with bathing, mobility, dressing, or eating. Also includes long commutes to the hospital for treatment, with caregiving becoming progressively more difficult. |
Activities of daily living/work impacts (n = 5) | Limitations on daily activities, difficulty obtaining childcare, and work-related impacts, including difficulties with work, difficulty finding jobs, inability to work, obtaining second jobs, or becoming self-employed. |
Social & family impacts (n = 4) | Changes in need for communication, impact on siblings or other children, strains on the family due to caregiving, as well as an acceptance of the situation. |