Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States

2021 ◽  
pp. 1-15
Author(s):  
Dominique Bulgin ◽  
Monika Asnani ◽  
Allison Vorderstrasse ◽  
Charmaine Royal ◽  
Wei Pan ◽  
...  
2015 ◽  
Vol 21 (1) ◽  
pp. 38-46 ◽  
Author(s):  
Sheena Daniels

Introduction: Sickle cell disease (SCD) is an inherited autosomal recessive disorder. In the United States, most individuals with SCD are African Americans, with an incidence of 1 in 400 to 1 in 500 live births. SCD is a lifelong disorder with no known cure.Background: SCD causes anemia, frequent painful episodes, and reduced life expectancy. The most disturbing clinical problem associated with SCD is severe pain episodes, the most common reason for hospitalization. Pharmacological interventions have been the mainstream for treatment; however, psychological interventions such as cognitive behavioral therapy (CBT) may complement current medical treatment, leading to better coping and overall improved quality of life.Methods: In a quasi-experimental one-group pretest–posttest study, 9 African American individuals with SCD completed 3 weekly educational sessions learning CBT methods.Results: Participants demonstrated increased frequency of use of CBT methods post-intervention, including diverting attention, coping self-statements, and behavioral activities, leading to better pain control. However, quality of life and role limitation did not show significant improvement.Discussion: CBT may be beneficial to those suffering from SCD when combined with conventional treatment options; however, there are still barriers to incorporating psychological interventions into practice.Conclusions: CBT shows promise for individuals with chronic conditions such as SCD, but more investigation into its efficacy is needed with larger sample sizes over longer periods of time.


2020 ◽  
Vol 18 (4) ◽  
pp. 224-231
Author(s):  
Jennel C. Osborne ◽  
Nancy S. Green ◽  
Arlene M. Smaldone

Introduction Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and their parents. Method Following forward and backward translation, Spanish-speaking child–parent dyads linguistically validated the translated instruments. Disease-specific and generic QOL perception of 28 child–parent dyads who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were analyzed by descriptive statistics, Mann–Whitney U test, absolute score differences, and minimal clinically important differences (MCID). Results The translated questionnaire required no further language changes. QOL scores were higher for Latino children and parents compared with non-Latinos, with score differences exceeding MCIDs for total scores and the majority of subscale scores. Conclusion Spanish language PedsQL SCD instruments allow measurement of QOL in Spanish-speaking Latino children with SCD and their parents. Score differences for Latinos mostly exceeded MCIDs, suggesting that these differences are clinically meaningful. Confirmation of these findings is warranted.


Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.


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

2016 ◽  
Vol 147 (12) ◽  
pp. 531-536
Author(s):  
Elena Cela ◽  
Ana G. Vélez ◽  
Alejandra Aguado ◽  
Gabriela Medín ◽  
José M. Bellón ◽  
...  

2015 ◽  
Vol 54 (14) ◽  
pp. 1354-1358 ◽  
Author(s):  
Cristiane Dias Malheiros ◽  
Luanne Lisle ◽  
Marilda Castelar ◽  
Katia Nunes Sá ◽  
Marcos Almeida Matos

2013 ◽  
Vol 20 (2) ◽  
pp. 80-86 ◽  
Author(s):  
H. El-Shinnawy ◽  
T. Goueli ◽  
M. Nasreldin ◽  
A. Meshref

2016 ◽  
Vol 54 (1) ◽  
pp. 158-162 ◽  
Author(s):  
Matthew S. Karafin ◽  
Arun K. Singavi ◽  
Mehraboon S. Irani ◽  
Kathleen E. Puca ◽  
Lisa Baumann Kreuziger ◽  
...  

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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