Perceived Racial Bias and Health-Related Stigma Among Youth with Sickle Cell Disease

Wakefield, Emily O; Popp, Jill; Dale, Lourdes P.; Santanelli, James P.; Pantaleao, Ashley; Zempsky, William T.

doi:10.1097/dbp.0000000000000381

Cited by 58 publications

(82 citation statements)

References 26 publications

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“…Universal screening, by definition, attempts to screen everyone and, therefore, mitigates the role of provider perception in deciding which families should be asked about SDoH. In a population of patients with an already high burden of bias and stigma, the ability to remove provider‐driven impetus for asking about needs may be beneficial . Another barrier to screening for SDoH may be that this is not currently a reimbursable action; therefore, additional staff cannot be hired to complete the task.…”

Section: Discussionmentioning

confidence: 99%

Universal screening for social determinants of health in pediatric sickle cell disease: A quality‐improvement initiative

Power-Hays

Mensah

et al. 2019

Pediatric Blood & Cancer

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Background Social determinants of health (SDoH) are socioeconomic factors that influence health outcomes. Guidelines recommend universal screening for SDoH at clinic visits; however, models that do not require additional resources are limited in subspecialty clinics. Individuals with sickle cell disease (SCD) face the burdens of chronic illness and often racial disparities, both of which may increase their vulnerability to adverse SDoH. Hematologists can impact both quality of life and clinical outcomes for their patients by implementing screening and referral programs addressing SDoH. Methods Through prospective, quality‐improvement methods, we introduced universal screening for SDoH into our pediatric hematology clinic. The intervention was a paper screener followed by a referral to local community organizations for the specific needs endorsed. The aims of this study were to determine the feasibility of universal screening for SDoH in a busy subspeciality clinic using pre‐existing resources to identify the needs of our patients and to facilitate referrals between our patients and community organizations via this low touch intervention. Results Between August 2017 and November 2018, 156 screens were completed. Sixty‐six percent were positive for at least one unmet social need for which 80% were referred to a relevant community organization. Forty‐five percent of patients available via follow‐up phone call reached out to the community organization. Conclusions There is a high burden of SDoH in families of children with SCD. Universal screening at a pediatric hematology clinic with the subsequent connection of patients with SCD to community resources is feasible using existing clinic resources.

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Section: Discussionmentioning

confidence: 99%

Universal screening for social determinants of health in pediatric sickle cell disease: A quality‐improvement initiative

Power-Hays

Mensah

et al. 2019

Pediatric Blood & Cancer

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“…There has been increasing attention to stigma in chronic health conditions 34 ; within pediatric populations, stigma has been examined in HIV, 12 , 47 epilepsy, 2 , 33 obesity, 42 , 44 , 49 and sickle cell disease (SCD). 56 Stigmatizing experiences have been linked to poor health and increased psychological distress in these youth populations. 44 , 47 , 56 …”

Section: Conceptualization Of Pain-related Stigmamentioning

confidence: 99%

“… 56 Stigmatizing experiences have been linked to poor health and increased psychological distress in these youth populations. 44 , 47 , 56 …”

Section: Conceptualization Of Pain-related Stigmamentioning

confidence: 99%

“…Few studies have evaluated felt stigma and health outcomes in pediatric pain. Wakefield et al 56 reported that among 28 youth with SCD, more perceived stigma was associated with greater reported pain burden and poorer quality of life. Similarly, in a study of 92 adolescents hospitalized for acute SCD episodes, higher SCD stigma scores predicted more pain interference, more loneliness, poorer quality of life, and less pain reduction.…”

Section: Implications Of Stigma For Pediatric Chronic Painmentioning

confidence: 99%

“…48 The Child Stigma Scale, 2 developed to evaluate stigma in children with epilepsy, has been adapted to evaluate health-related stigma in youth with SCD. 56 Adapting measures developed for other child health conditions to address stigma in adolescents with chronic pain is challenging due to the different ways in which stigma may be experienced across these conditions. For example, epilepsy is a health condition that can be verified through medical findings and, thus, there is likely less enacted stigma related to diagnostic certainty when compared to adolescents with chronic pain.…”

Section: Research Requirement: Measurement Of Pain-related Stigmamentioning

confidence: 99%

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Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings

Wakefield

Zempsky

Puhl

et al. 2018

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Introduction:Chronic pain in adolescents is a significant medical condition, affecting the physical and psychological well-being of youth and their families. Pain-related stigma is a significant psychosocial factor in adolescents with chronic pain that has been understudied, despite its implications for negative health outcomes, poor quality of life, and increased healthcare utilization.Objectives:To examine pain-related stigma in the literature documenting pediatric and adult health-related stigma and present preliminary findings from a focus group of adolescents with chronic pain.Methods:In this narrative review, we explored pain-related stigma research and conceptualized the literature to address pain-related stigma among adolescents with chronic pain. Additionally, we conducted a focus group of four adolescent females with chronic pain and using content analyses, coded the data for preliminary themes.Results:We propose a pain-related stigma model and framework based on our review and the findings from our focus group. Findings suggest that medical providers, school personnel (ie, teachers and school nurses), peers and even family members enact pain-related stigma toward adolescents with chronic pain.Conclusions:Based on this narrative review, there is preliminary evidence of pain-related stigma among adolescents with chronic pain and future research is warranted to better understand the nature and extent of this stigma within this population.

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Sickle cell disease is a global prototype for integrative research and healthcare

et al. 2021

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Differences in health outcomes and treatment responses within and between global populations have been well documented. There is growing recognition of the need to move beyond simple inventories and descriptions of these differences and our linear explanations for them, and gain a better understanding of the multifaceted systems and networks underlying them in order to develop more precise and effective remedies. Typical targets for such integrative research have been common multifactorial diseases. We propose sickle cell disease, one of the most common monogenic diseases, as an ideal candidate for elucidating the complexity of the influences of endogenous and exogenous factors on disease pathophysiology, phenotypic diversity, and variations in responses to treatments at both the individual and population levels. We provide data-informed representations of diverse contributors to sickle cell disease complications that could guide innovative efforts to advance scientific knowledge, clinical practice, and policy formulation related to the disease; help improve outcomes for people worldwide with sickle cell disease; and inform approaches to studying and addressing other diseases.

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Perceived Racial Bias and Health-Related Stigma Among Youth with Sickle Cell Disease

Abstract: Perceived racial bias and health-related stigma may be important to consider for future research investigating the psychological and physiological features of SCD for youth.

Cited by 58 publications

References 26 publications

Universal screening for social determinants of health in pediatric sickle cell disease: A quality‐improvement initiative

Universal screening for social determinants of health in pediatric sickle cell disease: A quality‐improvement initiative

Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings

Sickle cell disease is a global prototype for integrative research and healthcare

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