Racism and Health-Related Quality of Life in Pediatric Sickle Cell Disease: Roles of Depression and Support

2020 ◽  
Vol 45 (8) ◽  
pp. 858-866 ◽  
Author(s):  
Ifigenia Mougianis ◽  
Lindsey L Cohen ◽  
Sarah Martin ◽  
Caitlin Shneider ◽  
Meredith Bishop

Abstract Introductions Sickle cell disease (SCD) is the most commonly inherited blood disorder in the United States, and it predominately affects the Black community. SCD is characterized by a number of symptoms, including unpredictable pain, which can lead to hospitalizations. Data indicate that people with SCD experience racism and ample data indicate that racism predicts depressive symptoms and impaired health-related quality of life (HRQOL). In contrast, research suggests that social support might buffer the impact of racism on depression. The aim of this study was to explore associations among perceived racism, depressive symptoms, and HRQOL in adolescents with SCD. Consistent with the literature, it was predicted that perceived racism would predict HRQOL through depression, and social support would moderate the negative impact of racism on depression. Methods In a cross-sectional design, 75 inpatient adolescents with SCD completed measures of perceived racism, depressive symptoms, HRQOL, and social support. Results This results indicated a moderated mediation model with greater perceived racism predicting more depressive symptoms, which in turn related to poorer HRQOL; greater access to social support from individuals with SCD strengthened the perceived racism—depressive symptom association. Conclusions Findings suggest a model for how racism, depressive symptoms, HRQOL, and social support might interact in hospitalized adolescents with SCD. Longitudinal or experimental designs are needed to substantiate directionality among these variables. Results highlight several areas for future research and clinical avenues to improve the welfare of youth with SCD.

2021 ◽  
pp. 101107
Author(s):  
Rachel Bartlett ◽  
Zachary Ramsay ◽  
Amza Ali ◽  
Justin Grant ◽  
Angela Rankine-Mullings ◽  
...  

2020 ◽  
Vol 20 (4) ◽  
pp. e280-289
Author(s):  
Suthan Pandarakutty ◽  
Kamala Murali ◽  
Judie Arulappan ◽  
Sulaiman D. Al Sabei

Sickle cell disease (SCD) can significantly impair the health-related quality of life (HRQOL) of children and adolescents. This review aimed to assess current evidence regarding the HRQOL of children and adolescents with SCD in the Middle East and North Africa region. A systematic search of various databases was conducted to identify relevant articles, including MEDLINE® (National Library of Medicine, Bethesda, Maryland, USA), Scopus® (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature®, Masader (Oman Virtual Science Library, Muscat, Oman) and EBSCOhost (EBSCO Information Services, Ipswich, Massachusetts, USA). A total of 533 articles were identified; however, only 10 were eligible for inclusion in the final analysis. Results from these studies showed that children and adolescents with SCD had compromised HRQOL compared to their healthy peers, particularly in terms of physical, psychosocial, familial, financial and academic functioning. Therefore, interventions are necessary to improve overall HRQOL outcomes for this population. Keywords: Sickle Cell Disease; Health-Related Quality Of Life; Infants; Children; Adolescents; Middle East; North Africa.


2010 ◽  
Vol 8 (1) ◽  
pp. 121 ◽  
Author(s):  
Channa T Hijmans ◽  
Karin Fijnvandraat ◽  
Jaap Oosterlaan ◽  
Harriët Heijboer ◽  
Marjolein Peters ◽  
...  

Author(s):  
Turki Alzahrani ◽  
Raed Alzahrani ◽  
Amer Alzahrani ◽  
Abdullah Alzahrani ◽  
Abdu Adawi ◽  
...  

Aims: To gain a better understanding of the quality of life (QoL) of children and impact of this disease on parents QoL. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted in King Fahd Hospital, Albaha city, Albaha, Saudi Arabia, between March2020 and February 2021. Methodology: We included 95 responses. Two different tools were used for the purpose of this study. PedsQL™ Sickle Cell Disease Module was used to measure health-related quality of life (HRQoL) in healthy children and adolescents and those with acute and chronic health conditions. Moreover, PedsQL™ Family Information Form was completed by caregivers. Median and interquartile range were used for numerical variables since they were skewed. Bivariate analyses were carried out using non-parametrical tests and Pearson correlation. The prediction of QoL was accomplished through multivariate analysis. Results: A total of (95) responses were analyzed. Female respondents were 52.6%. The age median was 12 (IQR=10-14). Mothers represented the most frequent informant 46.3% in this current study. Significant association was found between QoL and certain independent factors, some of which is parental level of education (P< .001) and marital support (P< .001). Conclusion: Sickle cell disease (SCD) is a major condition accounts for a huge burden on variable levels. This study reported that low QoL among children affected by SCD. Higher education and current marital status of the parents were significantly associated with high QoL in SCD patients. Number of workdays affected due to child health was significantly correlated with low QoL.


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