Older female children experience poorer quality of life when levels of perceived racial bias are high

Background: Individuals with sickle cell disease (SCD) experience significant health problems that result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care and emergency room visits in which medical providers mistrust the severity of reported pain symptoms may contribute to health-related stigma. In addition to stigma related to seeking care for acute pain, racism is a source of stigma with associated systemic inequities for this majority Black population. There is currently limited research into the effects of health-related stigma and racial bias on the underserved SCD population; however, the small body of research has found barriers to healthcare utilization, greater pain burden, and increased emotional distress. There is little known about the influence of health-related stigma and racial bias on quality of life (QOL) of children with SCD. The present study assessed these relationships, and additionally, we sought to understand whether there were differences in this relationship with regards to demographic factors (e.g., age, gender). / Methods: Data was collected from African-American children with SCD aged 8 - 16 years (57% male, 63% HbSS) who received care at a medical center in the United States. Sixty-three percent of children were receiving chronic transfusion therapy or pheresis and 37% were receiving hydroxyurea therapy. Children completed the Childhood Stigma Scale (adapted for SCD), the Child Perceptions of Racism in Children and Youth scale (PRaCY), and the Pediatric Quality of Life Inventory for SCD (PedsQL). Caregivers provided demographic information. / Results: We first assessed whether age, gender, and health-related stigma predicted QOL and demonstrated a significant overall model, F(7, 22) = 4.59, p = .003, r = .46. Health-related stigma (p = .007) predicted QOL, but neither age or gender were significant predictors. The next model assessed whether age, gender, and racial bias predicted QOL and demonstrated a significant overall model, F(7, 22) = 4.59, p < .001, r = .52. Specifically, age (p = .03), but neither gender or racial bias were significant predictors. Of interest, there was a significant interaction between age, gender, and racial bias (p = .02), which indicated that males generally had higher QOL that did not differ as a function of racial bias or age. Similarly, females who reported low levels of racial bias had higher QOL that did not differ as a function of age. In contrast, females who reported high levels of racial bias had QOL that differed as a function of age. Specifically, older female children who reported high levels of perceived racial bias had poorer QOL (see Figure 1)

The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease

OBJECTIVES: Individuals with sickle cell disease (SCD) experience significant health problems that may result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care may contribute to health-related stigma and racial bias for this majority African-American/Black population. There is less known about the influence of health-related stigma and racial bias on the health-related quality of life (HRQOL) of children with SCD. In the present study, we assessed these relationships and identified differences across demographic factors (i.e. age, gender). DESIGN: Data was collected from African American children with SCD aged 8–16 years (57% male, 63% HbSS). Children completed the Childhood Stigma Scale (adapted for SCD), the Child Perceptions of Racism in Children and Youth scale, and the Pediatric Quality of Life Inventory Sickle Cell Disease Module. Caregivers provided demographic information. RESULTS: In the first regression model, health-related stigma (p = .007) predicted HRQOL, but neither age nor gender were significant predictors. In the second regression model, age (p = .03) predicted HRQOL, but neither gender nor racial bias were significant predictors. Of interest, there was a significant interaction between age, gender, and racial bias (p = .02). Specifically, older girls who reported high levels of perceived racial bias had poorer HRQOL. CONCLUSIONS: Our study highlights the need for increased awareness about the effects of health-related stigma and racial bias on HRQOL for children with SCD, particularly for older girls who endorse racial bias. Our findings will guide future stigma and bias reduction interventions that may meet the needs of older girls with SCD

Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in the Netherlands

Item does not contain fulltextPURPOSE: Perceiving favourable changes from one's illness may go hand in hand with experiencing harmful psychosocial effects. Each of these constructs should be considered when examining children's levels of psychological adjustment following stressful life events. A paediatric instrument that accounts for both positive and negative impact of stressful events has not been investigated in The Netherlands before. The aim of the study was to investigate psychometric properties of the Dutch version of the Benefit and Burden Scale for Children (BBSC), a 20-item questionnaire that intends to measure potential benefit and burden of illness in children. METHODS: Dutch paediatric survivors of childhood cancer aged 8-18 (N = 77) completed the BBSC and other psychological questionnaires: Pediatric Quality of Life Inventory (health-related quality of life), State-Trait Anxiety Inventory for Children (anxiety), Children's Revised Impact of Event Scale (posttraumatic stress) and Strengths and Difficulties Questionnaire (behavioural functioning). Reliability and validity were evaluated. RESULTS: Internal consistency (Cronbach's alpha, benefit 0.84, burden 0.72), test-retest reliability (benefit r = 0.74, burden r = 0.78) and homogeneity (mean inter-item correlation, benefit r = 0.34, burden r = 0.22) were satisfactory. Burden was associated with HRQoL (-), anxiety (+), posttraumatic stress symptoms (+) and behavioural problems. Benefit did not correlate with the psychological outcomes. CONCLUSIONS: The Dutch version of the BBSC shows promising psychometric properties. Perceived benefit and disease-related burden are distinct constructs; both should be considered when examining children's psychological adjustment to potentially traumatic experiences. The BBSC may be useful as monitoring and screening instrument

Development of a multi-dimensional measure of resilience in adolescents: the Adolescent Resilience Questionnaire

Background: The concept of resilience has captured the imagination of researchers and policy makers over the past two decades. However, despite the ever growing body of resilience research, there is a paucity of relevant, comprehensive measurement tools. In this article, the development of a theoretically based, comprehensive multidimensional measure of resilience in adolescents is described.Methods: Extensive literature review and focus groups with young people living with chronic illness informed the conceptual development of scales and items. Two sequential rounds of factor and scale analyses were undertaken to revise the conceptually developed scales using data collected from young people living with a chronic illness and a general population sample.Results: The revised Adolescent Resilience Questionnaire comprises 93 items and 12 scales measuring resilience factors in the domains of self, family, peer, school and community. All scales have acceptable alpha coefficients. Revised scales closely reflect conceptually developed scales.Conclusions: It is proposed that, with further psychometric testing, this new measure of resilience will provide researchers and clinicians with a comprehensive and developmentally appropriate instrument to measure a young person&rsquo;s capacity to achieve positive outcomes despite life stressors.<br /

A 3-year follow-up of the intellectual and academic functioning of children receiving central nervous system prophylactic chemotherapy for leukemia

This prospective study compared the intellectual and academic functioning of two groups of children treated for cancer over the 3 years after their diagnosis. One group consisted of children who received central nervous system (CNS) prophylactic chemotherapy, and the other group consisted of children with cancer who did not receive CNS chemotherapy. The results suggest that the children who received CNS chemotherapy experienced more adverse effects from their treatment in the area of academic functioning than the children who did not receive CNS chemotherapy. Although there were no differences in the academic functioning of the two groups of children immediately after their diagnosis, 3 years postdiagnosis, the CNS-treated children scored more poorly on academic tests of reading, spelling, and arithmetic than the non-CNS-treated children. The results suggest that CNS chemotherapy prophylaxis may impede academic achievement.Ronald T. Brown, Michael B. Sawyer, Georgia Antoniou, Ian Toogood, Michael Rice, Nancy Thompson, Avi Madan-Swai

Psychosocial Assessment as a Standard of Care in Pediatric Cancer

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta-analyses (n = 149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncolog