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Protocol - Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult

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Description

The Measure of Sickle Cell Stigma (MoSCS) is an 11-item, self-administered questionnaire that measures the amount of total stigma experienced by sickle cell disease patients. The protocol includes 4 subscales measuring social exclusion, internalized stigma, disclosure concerns, and expected discrimination.

Specific Instructions

May be used in adolescents 15 years and older, as well as adults.

Availability

Available

Protocol
Measure of Sickle Cell Stigma (MoSCS) Scale
Instructions

The statements below are based on some experiences of people with sickle cell disease (SCD). It is not a test, and there are no “right” or “wrong” responses. Therefore, please respond to each statement as openly and honestly as you possibly can. There is no need to worry about the privacy of your answers or how they might compare to the answers of others, because we are interested in overall views, not individual points of view. Choose a number using the scale below that best indicates your agreement with each statement and write it in the corresponding space. These numbers mean the following:

  • 1 = completely false
  • 2 = mostly false
  • 3 = somewhat false (more false than true)
  • 4 = somewhat true (more true than false)
  • 5 = mostly true
  • 6 = completely true
Items
Social Exclusion

People have physically backed away from me because I have SCD.

As a rule, telling others that I have SCD has been a mistake.

People seem to be afraid of me because I have SCD.

Internalized Stigma

I feel guilty because I have SCD.

Having SCD makes me feel that I am a bad person.

I feel I am not as good as others because I have SCD.

Disclosure Concerns

In many areas of my life, no one knows that I have SCD.

I am very careful who I tell that I have SCD.

Telling someone I have SCD is risky.

Expected Discrimination

People lose jobs when employers learn they have SCD.

I worry about people discriminating against me because I have SCD.

Scoring

Each item is assigned a value ranging from 1 to 6. A total stigma scale score is computed by adding the values for each of the 11 items. Subscale scores are computed by adding the values for the items that constitute each subscale: Social Exclusion, Internalized Stigma, Disclosure Concerns, and Expected Discrimination. Higher scores indicate greater levels of stigma.

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adolescent, Adult

Participants

Adult, adolescent (ages 15 and older)

Selection Rationale

The Measure of Sickle Cell Stigma (MoSCS) is a validated and useful tool for measuring disease-specific stigma among adults and adolescents, ages 15 and older, living with sickle cell disease. Effects can include negative social consequences for the individual perceiving stigma from status loss, employment discrimination, impairment of healthcare interactions, and reduced physiological and psychological well-being.

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Measure of Sickle Cell Stigma (MoSCS)

Source

Bediako, S. M., Lanzkron, S., Diener-West, M., Onojobi, G., Beach, M. C., & Haywood, C. (2016). The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study. Journal of Health Psychology, 21(5), 808-820. doi:10.1177/1359105314539530

General References

Bulgin, D., Asnani, M., Vorderstrasse, A., Royal, C., Pan, W., & Tanabe, P. (2021). Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States. Psychology, Health & Medicine, 1-15. doi:10.1080/13548506.2021.2019808

Holloway, B. M., McGill, L. S., & Bediako, S. M. (2017). Depressive symptoms and sickle cell pain: The moderating role of internalized stigma. Stigma and Health, 2(4), 271-280. doi:10.1037/sah0000060

Protocol ID

870301

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_Careful_Who_Tell
PX870301080000 "Disclosure Concerns: I am very careful who more
I tell that I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_No_One_Knows
PX870301070000 "Disclosure Concerns: In many areas of my more
life, no one knows that I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_Telling_Someone_Risky
PX870301090000 "Disclosure Concerns: Telling someone I have more
SCD is risky. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Expected_Discrimination_Against
PX870301110000 "Expected Discrimination: I worry about more
people discriminating against me because I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Expected_Discrimination_Lose_Job_Employers_Learn
PX870301100000 "Expected Discrimination: People lose jobs more
when employers learn they have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Internalized_Stigma_Feel_Bad_Person
PX870301050000 "Internalized Stigma: Having SCD makes me more
feel that I am a bad person. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Internalized_Stigma_Feel_Guilty
PX870301040000 "Internalized Stigma: I feel guilty because more
I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Internalized_Stigma_Feel_Not_Good_As_Others
PX870301060000 "Internalized Stigma: I feel I am not as more
good as others because I have SCD." show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_People_Afraid
PX870301030000 "Social Exclusion: People seem to be afraid more
of me because I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_People_Backed_Away
PX870301010000 "Social Exclusion: People have physically more
backed away from me because I have SCD. " show less
N/A
PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_Telling_Others_Mistake
PX870301020000 "Social Exclusion: As a rule, telling others more
that I have SCD has been a mistake. " show less
N/A
SCD Psychosocial and Social Determinants of Health
Measure Name

Sickle Cell Disease Health-Related Internal Stigma

Release Date

February 6, 2023

Definition

Stigmatization due to health status or chronic disease burden is referred to as health-related stigma and includes an intrapersonal component of stigma expressed as internalized attitudes about one’s own self-worth and capabilities, as well as anticipated stigma, manifested as the expectation that one will be negatively stereotyped or discriminated against in future encounters because of their sickle cell disease status.

Purpose

Internal stigma can cause detrimental effects on the health of individuals, especially those with chronic disease burden, such as sickle cell disease.

Keywords

Stigma, internal, sickle cell disease, SCD, health status, Measure of Sickle Cell Stigma, MoSCS, emotion, Psychosocial, chronic, chronic disease

Measure Protocols
Protocol ID Protocol Name
870301 Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult
Publications

There are no publications listed for this protocol.