Paternal Stress and Child Outcomes in Youth with Sickle Cell Disease.

Abstract

The objective of this study was to investigate the relationship between parental stress and health-related quality of life (HRQOL) among children with sickle cell disease (SCD). A cross-sectional correlational survey research design was used for this quantitative study. One hundred-fifty patients between the ages of 8-17 years old and their caregivers were enrolled from an outpatient comprehensive sickle cell program within a hospital setting. Patients completed the Pediatric Quality of Life Scale 3.0 SCD Module, whereas parents completed the Parental Stress Scale and demographic information questionnaire. Multiple regression analysis was used to determine if parental stress scores predicted the HRQOL of children diagnosed with SCD after controlling for demographic variables. The sample included 150 patients (median age: 12 years old; female: 52%) who were diagnosed with SCD along with 150 of their caregivers. Higher levels of parental stress predicted lower HRQOL scores (p < .001). As parents reported elevated levels of stress related to caring for their child with SCD, patients reported worsening HRQOL. More evidence is needed in order to determine, which constructs of parental stress had a significant impact on HRQOL. It may be helpful for healthcare workers to be aware of familial influences of reduced HRQOL among children diagnosed with SCD. Parents reporting increased stress related to raising their child with SCD may benefit from additional support and resources.