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Abstract
Sickle cell disease (SCD) requires continuous family-centred management due to its chronicity and severity. Affected children depend greatly on their caregivers for assistance. SCD is the fourth leading cause of hospitalisation in children in Jamaica, with an incidence rate of 1:150 births. This strong dependence, frequent hospitalisation, medical visits and along with the unpredictable nature of the disease may cause financial strain and caregiver burden. This study seeks to determine the level of caregiver burden experienced by caregivers of children living with sickle cell disease attending a clinic in urban Jamaica. A cross-sectional study was conducted among 180 caregivers of children ages 1 to 16 years living with SCD, attending a specialised sickle cell clinic. Data were collected using the Zarit Burden Interview (ZBI) Version 1.0. Descriptive statistics were utilised to summarise data. The majority (79%) of respondents were females between the ages of 20 and 49 years old. Majority (76%) were employed, with 13% earning less than $10,000 which is below minimum wage. 48% of caregivers reported that they rarely or never experienced burden of care with their children. The ZBI overall burden score was M = 27.2, which indicate mild - moderate burden. The highest burden was future expectations for child (41%). Majority (73%) indicated they often did not have enough money to care for the child. In this study, caregivers are younger and experienced burden mild to moderate; factors such as stable income and family support helped to reduce burden.
Keywords: Caregiver burden, Caregiver stress, Sickle cell disease, Zarit Burden Interview
Introduction
Caregivers are individuals who are significantly involved in the care of the sick person during their illness (1). Individuals living with the disease need the support and care of informal caregivers (parents or family members), especially during their childhood years (2). Caring for individuals suffering from a chronic illness can be very stressful and poses significant challenges for caregivers and family which may result in caregiver burden. The chronicity and severity of sickle cell disease (SCD), require family-centred management, as the affected child depends greatly on caregivers for their general care and management. This continuous dependence leads to caregiver burden, poor quality of life, depression, anxiety and social isolation. (3-5). It is noteworthy that individuals living with the...