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Protocol - Sickle Cell Disease Health-Related Stigma - Child

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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

Available

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 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

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
StandardNameIDSource
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 IDVariable DescriptiondbGaP Mapping
PX870101_Child_Stigma_Scale_Avoid_Talk_Other_About_SCD
PX870101080000 "How often do you try to avoid talking to more
other people about your SCD? " show less
N/A
PX870101_Child_Stigma_Scale_Feel_Different_Other_Kids
PX870101010000 "How often do you feel different from other more
kids because you have SCD?" show less
N/A
PX870101_Child_Stigma_Scale_Feel_Embarassed
PX870101060000 "How often do you feel embarrassed about more
your SCD?" show less
N/A
PX870101_Child_Stigma_Scale_Feel_Other_Children_Uncomfortable
PX870101030000 "How often do you feel other children are more
uncomfortable with you because of your SCD? " show less
N/A
PX870101_Child_Stigma_Scale_Feel_Other_People_Not_Friends
PX870101040000 "How often do you feel other people may not more
want to be friends with you if they know you have SCD? " show less
N/A
PX870101_Child_Stigma_Scale_Feel_People_Not_Go_Out
PX870101050000 "How often do you feel people would not want more
to go out with you or ask you to parties if they know you have SCD? " show less
N/A
PX870101_Child_Stigma_Scale_Feel_People_Not_Like_You
PX870101020000 "How often do you feel people may not like more
you if they know you have SCD? " show less
N/A
PX870101_Child_Stigma_Scale_Keep_SCD_Secret_Other_Kids
PX870101070000 "How often do you keep your SCD a secret more
from other kids? " show less
N/A
SCD Psychosocial and Social Determinants of Health
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.