Protocol - Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult
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
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
| 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. |
| 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. |
| 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. |
| 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 Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_Careful_Who_Tell | ||||
| PX870301080000 | "Disclosure Concerns: I am very careful who more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_No_One_Knows | ||||
| PX870301070000 | "Disclosure Concerns: In many areas of my more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Disclosure_Concerns_Telling_Someone_Risky | ||||
| PX870301090000 | "Disclosure Concerns: Telling someone I have more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Expected_Discrimination_Against | ||||
| PX870301110000 | "Expected Discrimination: I worry about more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Expected_Discrimination_Lose_Job_Employers_Learn | ||||
| PX870301100000 | "Expected Discrimination: People lose jobs more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Internalized_Stigma_Feel_Bad_Person | ||||
| PX870301050000 | "Internalized Stigma: Having SCD makes me more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Internalized_Stigma_Feel_Guilty | ||||
| PX870301040000 | "Internalized Stigma: I feel guilty because more | 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 | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_People_Afraid | ||||
| PX870301030000 | "Social Exclusion: People seem to be afraid more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_People_Backed_Away | ||||
| PX870301010000 | "Social Exclusion: People have physically more | N/A | ||
| PX870301_Internal_Stigma_Sickle_Cell_Disease_Social_Exclusion_Telling_Others_Mistake | ||||
| PX870301020000 | "Social Exclusion: As a rule, telling others more | N/A | ||
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.