Insights Into the Caregiver Experience for Pediatric Patients With Sickle Cell Disease in Saudi Arabia: Demographic Profiles, Care Recipient Characteristics, and Subjective Well-Being.

Abstract

Objective: This study aimed to examine the demographic characteristics of informal caregivers of pediatric patients with sickle cell disease. The background characteristics of both caregivers and care recipients were analyzed, and the informal care situation was examined. Additionally, this study aimed to quantify the economic impact of care.

Methods: This cross-sectional study was conducted in the eastern region of Saudi Arabia, involving a sample of 27 caregivers of pediatric patients diagnosed with sickle cell disease. The survey instruments comprised the iMAT Valuation of Informal Care Questionnaire (IVICQ) to evaluate informal care costs, along with the Katz Index of Independence in activities of daily living (ADL) to assess the functional abilities of the care recipients.

Results: Most participants were female caregivers (81.5%) and married (74.1%). The average age of the caregiver members was 38.0 years. Those in need of care, predominantly daughters or sons (85.2%), had a positive health outlook (average score: 6.85) and moderate independence (average ADL score: 4.70). The CarerQol-7D indicated variable perceived quality of life, with fulfillment in caregiving tasks (74.1%) and minimal relationship problems (74.1%). Economically, caregivers invest 245 h per week, which costs SAR 13,805 (3681 USD). The total opportunity cost was SAR 806 (215 USD) per caregiver per week.

Conclusion: This study examined caregiver dynamics in pediatric patients with sickle cell disease. Female, predominantly married caregivers, showed a long-term commitment. Despite these challenges, the caregivers demonstrated confidence in the importance of their roles. This study highlights the need for targeted support to improve caregivers' well-being.