The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study

Bediako, Shawn M.; Lanzkron, Sophie; Diener‐West, Marie; Onojobi, Gladys; Beach, Mary Catherine; Haywood, Carlton

doi:10.1177/1359105314539530

Cited by 58 publications

(91 citation statements)

References 44 publications

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“…In addition, we made the necessary transformation of the pain frequency variable in order to address issues of skewness and kurtosis, thereby reducing the overestimation that might have led to spurious findings. Finally, our focus on internalized stigma represents a unique perspective that distinguishes this work from approaches that rely on global measurement of the stigma construct and extends previous work that failed to concurrently assess depressive symptoms, patient-reported pain frequency, and stigma (Bediako et al, 2016; Jenerette et al, 2012). We see this as a significant strength because our approach is consistent with the recent research literature which suggests that assessing the multidimensional nature of stigma increases the likelihood of a more distinctive comprehension of how stigma operates, which might then lead to the development of more efficient and effective interventions (Earnshaw, Smith, Cunningham, & Copenhaver, 2015).…”

Section: Discussionmentioning

confidence: 64%

“…Internalized stigma was assessed with a subscale from the Measure of Sickle Cell Stigma (MoSCS), an 11-item instrument that measures disease-specific stigma (Bediako et al, 2016). Participants indicated their level of agreement with three items that assess negative feelings or guilt about having SCD (e.g., “I feel that I'm not as good as others because I have sickle cell disease”; “I feel guilty because I have sickle cell disease”; “Having sickle cell disease makes me feel that I am a bad person”).…”

Section: Methodsmentioning

confidence: 99%

“…Further, to support the idea of interrelationships among stigma, pain, and depression, Jenerette and colleagues found that participants who had more than three pain episodes that required hospitalizations during the past year reported greater stigma and more depressive symptoms than those who had fewer than three episodes (Jenerette et al, 2012). In another study, Bediako et al (2016) administered the Measure of Sickle Cell Stigma (MoSCS) to 262 adults in the Baltimore/Washington, DC region and reported that SCD stigma was comprised of four factors: Internalized Stigma (negative personal feelings or guilt about having SCD); Social Exclusion (the extent to which individuals experience social/interpersonal rejection because of their SCD status); Disclosure Concerns (apprehension in disclosing one's SCD status to others); and Expected Discrimination (the anticipation that one will be negatively stereotyped or discriminated against because of their SCD status). All of the stigma factors except Disclosure Concerns were associated with perceived disease severity and health care utilization for acute SCD pain (Bediako et al, 2016).…”

mentioning

confidence: 90%

“…However, their original study did not include a direct assessment of stigma. Over the past decade, instruments developed specifically for persons living with SCD indicate that stigma is a multidimensional construct that is also associated with a range of psychological and clinical outcomes (Bediako et al, 2016; Jenerette, Brewer, Crandell, & Ataga, 2012). For example, Jenerette et al (2012) developed and administered the Sickle Cell Disease Health-Related Stigma Scale (SCD-HRSS) to a sample of 77 adults living in North Carolina and noted a positive association between stigma and depressive symptoms.…”

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confidence: 99%

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Depressive symptoms and sickle cell pain: The moderating role of internalized stigma.

Holloway¹,

McGill²,

Bediako³

2017

Stigma and Health

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Recent studies describe the clinical implications of sickle cell disease (SCD) stigma. However, little is known about its link to depressive symptoms or its relative influence on the association between depressive symptoms and SCD pain. We examined whether internalized stigma about SCD moderated the relation between depressive symptoms and pain among 69 adults attending a SCD clinic who reported pain episodes and healthcare use over the past three months. Unadjusted bivariate analyses showed a marginal association between depressive symptoms and SCD pain frequency (r = .21, p < .10). Further analyses adjusting for health care use indicated a moderating effect of internalized stigma (b = −.10, p < .05): a significant association between depressive symptoms and pain was observed among participants low in internalized stigma, but this relationship was attenuated at moderate and high stigma levels. These results denote counterintuitive consequences of internalized attitudes about SCD and suggest a need for further study of the psychosocial and clinical implications of SCD stigma.

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Section: Discussionmentioning

confidence: 64%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 90%

mentioning

confidence: 99%

See 2 more Smart Citations

Depressive symptoms and sickle cell pain: The moderating role of internalized stigma.

Holloway¹,

McGill²,

Bediako³

2017

Stigma and Health

View full text Add to dashboard Cite

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“…For example, the term^sickler^has historically been used in medical discourse to describe individuals living with sickle cell disease. Members of this patient population have voiced discomfort with this label and may view it as a sign of disrespect (Bediako et al 2016;Wailoo 2006). As a general best practice, individuals should be trained to avoid the attachment of medical characteristics to individuals.…”

Section: Discussionmentioning

confidence: 99%

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy

McDonald

Creary

Powell

et al. 2017

Journal of Genetic Counseling

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Sickle cell trait (SCT) is usually benign. However, there are some conditions that may lead to SCT-related problems and put athletes with the trait at particular risk. In 2010 the National Collegiate Athletic Association (NCAA) issued a policy that required all Division I (DI) student-athletes to confirm their SCT status or sign a liability waiver to opt out of testing. Athletic trainers and team physicians play key roles in the policy implementation and we examined their perceptions and practices. Between December 2013 and March 2014 we interviewed 13 head athletic trainers and team physicians at NCAA Division I colleges and universities in North Carolina. We used an interview guide with open-ended questions covering knowledge of SCT, historical screening and education practices, current implementation, and policy benefits and challenges. Participants were knowledgeable about SCT and thought the policy was beneficial in providing SCT health information to and for student-athletes. Schools varied in provision of genetic counseling, offering the waiver, SCT tests administered, and other aspects. Challenges included: insufficient guidance from the NCAA; financial considerations; and misunderstanding of the relationships of race and ancestry to SCT risk. Athletic staff found the policy valuable, but felt it needs clarity and standardization.

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Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

et al. 2023

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ImportancePain related to sickle cell disease (SCD) is complex and associated with social determinants of health. Emotional and stress-related effects of SCD impact daily quality of life and the frequency and severity of pain.ObjectiveTo explore the association of educational attainment, employment status, and mental health with pain episode frequency and severity among individuals with SCD.Design, Setting, and ParticipantsThis is a cross-sectional analysis of patient registry data collected at baseline (2017-2018) from patients treated at 8 sites of the US Sickle Cell Disease Implementation Consortium. Data analysis was performed from September 2020 to March 2022.Main Outcomes and MeasuresElectronic medical record abstraction and a participant survey provided demographic data, mental health diagnosis, and Adult Sickle Cell Quality of Life Measurement Information System pain scores. Multivariable regression was used to examine the associations of education, employment, and mental health with the main outcomes (pain frequency and pain severity).ResultsThe study enrolled a total of 2264 participants aged 15 to 45 years (mean [SD] age, 27.9 [7.9] years; 1272 female participants [56.2%]) with SCD. Nearly one-half of the participant sample reported taking daily pain medication (1057 participants [47.0%]) and/or hydroxyurea use (1091 participants [49.2%]), 627 participants (28.0%) received regular blood transfusion, 457 (20.0%) had a depression diagnosis confirmed by medical record abstraction, 1789 (79.8%) reported severe pain (rated most recent pain crises as ≥7 out of 10), and 1078 (47.8%) reported more than 4 pain episodes in the prior 12 months. The mean (SD) pain frequency and severity t scores for the sample were 48.6 (11.4) and 50.3 (10.1), respectively. Educational attainment and income were not associated with increased pain frequency or severity. Unemployment (β, 2.13; 95% CI, 0.99 to 3.23; P &lt; .001) and female sex (β, 1.78; 95% CI, 0.80 to 2.76; P &lt; .001) were associated with increased pain frequency. Age younger than 18 years was inversely associated with pain frequency (β, −5.72; 95% CI, −7.72 to −3.72; P &lt; .001) and pain severity (β, 5.10; 95% CI, −6.70 to −3.51; P &lt; .001). Depression was associated with increased pain frequency (β, 2.18; 95% CI, 1.04 to 3.31; P &lt; .001) but not pain severity. Hydroxyurea use was associated with increased pain severity (β, 1.36; 95% CI, 0.47 to 2.24; P = .003), and daily use of pain medication was associated with both increased pain frequency (β, 6.29; 95% CI, 5.28 to 7.31; P &lt; .001) and pain severity (β, 2.87; 95% CI, 1.95 to 3.80; P &lt; .001).Conclusions and RelevanceThese findings suggest that employment status, sex, age, and depression are associated with pain frequency among patients with SCD. Depression screening for these patients is warranted, especially among those experiencing higher pain frequency and severity. Comprehensive treatment and pain reduction must consider the full experiences of patients with SCD, including impacts on mental health.

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The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study

Cited by 58 publications

References 44 publications

Depressive symptoms and sickle cell pain: The moderating role of internalized stigma.

Depressive symptoms and sickle cell pain: The moderating role of internalized stigma.

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy

Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

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