The Psychosocial Impact of Sickle Cell Disease in Children
Date
2021-09-27
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Abstract
Sickle cell disease (SCD) is a genetic disorder associated with a number of severe biopsychosocial complications. Yet, children diagnosed with SCD have been under-represented in health care research, particularly with respect to the psychological and social consequences of the disease. This Thesis aimed to contribute to the psychosocial SCD research foundation by 1) reviewing existing literature that examined health-related quality of life (HRQL) among children diagnosed with SCD; and 2) investigating social adjustment and the associations with disease, and non-disease related factors in children with SCD. First, a systematic review was conducted where four electronic databases were searched for articles examining HRQL in children with SCD as a primary aim, and results were summarized by narrative synthesis. Sixty-eight articles were included in the final review. Results indicated that children with SCD generally report poorer HRQL, and HRQL may be associated with a number of factors such as, pain, identifying as female, or SCD related complications. Secondly, a retrospective examination of data from a neuropsychology clinic at a tertiary children’s hospital allowed for examination of social adjustment in children with SCD. Social adjustment scores were compared with previously collected data of healthy children and other chronic illness populations, and linear regression models were conducted to assess disease and non-disease related factors as potential predictor variables of social adjustment. Results indicated that children with SCD report similar social adjustment as healthy peers and youth with chronic illness. Parent-proxy reports indicate significantly better social adjustment in youth with SCD compared to those with chronic illness, but no different than healthy peers. Findings from regression analyses indicate that sex, executive functioning, and sociocultural factors may influence social adjustment in this population. Evidence from this work guides future research to incorporate sociocultural factors in future SCD research and encourages the furtherment of psychosocial research in this under-served population.
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Keywords
Paediatrics, Sickle Cell Disease, Psychosocial, Health Related Quality of Life, Social Health
Citation
Zwicker, H. M. (2021). The Psychosocial Impact of Sickle Cell Disease in Children (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.