Protocol - Sickle Cell Disease Health-Related Stigma - Child
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
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 |
|---|
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 | ||
Measure Name
Sickle Cell Disease Health-Related Stigma
Release Date
February 6, 2023
Definition
Stigmatization due to health status or chronic disease burden is referred to as health-related stigma and involves devaluation, judgment, or social disqualification of individuals based on health condition.
Purpose
Stigma can cause detrimental effects on the health of individuals, especially those with chronic disease burden.
Keywords
Stigma, Child, Children, sickle cell disease, SCD, health status, Child Stigma Scale, CSS, emotion, Psychosocial, chronic, chronic disease
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 870101 | Sickle Cell Disease Health-Related Stigma - Child |
Publications
There are no publications listed for this protocol.