Protocol - Sickle Cell Disease Health-Related Stigma - Child
- Discrimination
- Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult
- Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult
Description
The Child Stigma Scale (CSS) is an eight-item, self-administered questionnaire that measures how the chronic disease burden of sickle cell disease (SCD) affects children and their daily lives. Each item is rated on a 5-point scale from “Never” to “Very Often.” Higher scores indicate greater perceived SCD-related stigma.
Specific Instructions
None
Availability
This protocol is freely available; permission not required for use.
Protocol
Please mark or highlight (e.g., bold or highlight) the answer that is most appropriate.
| Never | Not often | Sometimes | Often | Very often | ||
| 1 | How often do you feel different from other kids because you have SCD? | |||||
| 2 | How often do you feel people may not like you if they know you have SCD? | |||||
| 3 | How often do you feel other children are uncomfortable with you because of your SCD? | |||||
| 4 | How often do you feel other people may not want to be friends with you if they know you have SCD? | |||||
| 5 | How often do you feel people would not want to go out with you or ask you to parties if they know you have SCD? | |||||
| 6 | How often do you feel embarrassed about your SCD? | |||||
| 7 | How often do you keep your SCD a secret from other kids? | |||||
| 8 | How often do you try to avoid talking to other people about your SCD? |
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
Child, Adolescent
Participants
Children and adolescents, ages 8-12, with sickle cell disease
Selection Rationale
The Child Stigma Scale (CSS) is a validated and widely used tool across multiple disease conditions to measure health-related stigma in children.
Language
English
Standards
| Standard | Name | ID | Source |
|---|---|---|---|
| caDSR Form | PX870101 Child Stigma Scale | 14425041 | caDSR Form |
Derived Variables
None
Process and Review
Not applicable
Protocol Name from Source
Child Stigma Scale (CSS)
Source
Close, J. K., Austin, J., MacLeod, D. W., Dunn, J., Shen, S. M., & Perkins, S. M. (2004). Measuring stigma in children with epilepsy and their parents: Instrument development and testing. Epilepsy & Behavior, 5(4), 472-482.
General References
Hood, A. M., Crosby, L. E., Hanson, E., Shook, L. M., Lebensburger, J. D., Madan-Swain, A., Miller, M. M., & Trost, Z. (2020). The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease. Ethnicity & Health, 27(4), 833-846. doi:10.1080/13557858.2020.1817340
Martin, S. R., Cohen, L. L., Mougianis, I., Griffin, A., Sil, S., & Dampier, C. (2018). Stigma and pain in adolescents hospitalized for sickle cell vasoocclusive pain episodes. Clinical Journal of Pain, 34(5), 438-444. doi:10.1097/AJP.0000000000000553
Protocol ID
870101
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX870101_Child_Stigma_Scale_Avoid_Talk_Other_About_SCD | ||||
| PX870101080000 | "How often do you try to avoid talking to more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_Different_Other_Kids | ||||
| PX870101010000 | "How often do you feel different from other more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_Embarassed | ||||
| PX870101060000 | "How often do you feel embarrassed about more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_Other_Children_Uncomfortable | ||||
| PX870101030000 | "How often do you feel other children are more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_Other_People_Not_Friends | ||||
| PX870101040000 | "How often do you feel other people may not more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_People_Not_Go_Out | ||||
| PX870101050000 | "How often do you feel people would not want more | N/A | ||
| PX870101_Child_Stigma_Scale_Feel_People_Not_Like_You | ||||
| PX870101020000 | "How often do you feel people may not like more | N/A | ||
| PX870101_Child_Stigma_Scale_Keep_SCD_Secret_Other_Kids | ||||
| PX870101070000 | "How often do you keep your SCD a secret more | N/A | ||