No abstract

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire–SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory–SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different (F [1.837, 113.924]=86.071, P<0.001); caregivers reported more PCE (M=2.75, SD=0.66) and SCE (M=2.78, SD=0.66) than disengagement (M=1.75, SD=0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (β=−0.28, P=0.050), and greater caregiver SCE coping was related to higher youth HRQOL (β=0.28, P=0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

Sickle Cell Disease (SCD), the most common genetic disorder in the U.S., primarily affects youth of African or Latino backgrounds. Regular clinic attendance promotes positive health outcomes in pediatric SCD. Caregivers of youth with SCD endorse high levels of stress that may disrupt clinic attendance. Improved caregiver coping may help address barriers to clinic attendance in SCD families. Sixty-three caregivers and youth (Mage = 13.2, 60.3% male) completed the Responses to Stress Questionnaire- Sickle Cell Disease (RSQ-SC). The RSQ-SC assesses primary control engagement (PCE), secondary control engagement (SCE), and disengagement coping. The researchers tabulated percent of pediatric hematology appointments attended, canceled by patient/provider/due to hospitalization, and no-showed over the past year via medical chart review. Results indicated a significant positive association between caregiver education and percentage of appointments attended (r = .295, p = 0.19). A hierarchical regression revealed that caregiver coping did not predict clinic attendance [F (4, 58) = 2.114, p = 0.091, R2 Δ = 0.040] when controlling for caregiver education. In isolation, caregiver coping may not be an effective target for interventions focused on improving adherence to pediatric hematology appointments.