Evidence suggests that impairment in caregiver wellbeing can alter the quality of care in children with sickle cell disease. We examined 121 parent caregivers of adolescents with sickle cell disease for emotional distress and disruptions to caregiver lifestyle and interests. Participants were predominantly mothers 92(76%) with mean age, 43.59 (SD = 6.39) years. Four in every ten caregivers had emotional distress, and this was predicted by frequent hospital attendance and disruptions in caregiver lifestyle, relationships, and interests. Psychosocial support to promote resilience and adaptive coping-styles to deal with the stress from unforeseen crises, frequent hospital visits, and lifestyle disruptions are indicated to improve caregiver wellbeing.
Keywords: adolescents; illness intrusiveness; parent caregivers; psychological distress; psychosocial burden; sickle cell disease.