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

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

Selection Rationale

The Sickle Cell Disease Health-Related Stigma Scale Short Form (SCD-HRSS-SF) is a standardized, reliable, and valid instrument used to collect information about external sources of stigma experienced by patient populations with sickle cell disease due to their health-related condition.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

The Sickle Cell Disease Psychosocial and Social Determinants of Health Working Group reviewed this protocol.  Guidance from the WG includes:

• updated protocol

Protocol Name from Source

Sickle Cell Disease Health-Related Stigma Scale Short Form (SCD-HRSS-SF)

Source

Jenerette, C., OBrien, J., Jaja, C., Carvalho, E. S. S., Brewer, C., & Hickman, R. L., Jr (2023). Psychometrics of the Sickle Cell Disease Health-Related Stigma Scale-Short Form. Western Journal of Nursing Research, 45(5), 425–431. https://doi.org/10.1177/01939459221142164

General References

Adeyemo, T.A., Ojewunmi, O.O., Diaku-Akinwumi, I.N., Ayinde, O.C. and Akanmu, A.S. (2015), Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study. Pediatric Blood & Cancer, 62(7), 1245–1251. https://doi.org/10.1002/pbc.25503

Bulgin, D., Tanabe, P., & Jenerette, C. (2018). Stigma of Sickle Cell Disease: A systematic review. Issues in Mental Health Nursing, 39(8), 675–686. https://doi.org/10.1080/01612840.2018.1443530

Ezenwa, M., Yao, Y., Molokie, R., Wang, Z., Suarez, M., Zhao, Z., Carrasco, J., Angulo, V., Shuey, D., Roach, K., Oraifo, G., & Wilkie, D. (2016). (157) The association of sickle cell-related stigma with physical and emotional symptoms in patients with sickle cell pain. The Journal of Pain : Official Journal of the American Pain Society. 17(4), S15?S15. https://doi.org/10.1016/j.jpain.2016.01.060

Jenerette, C., Brewer, C. A., Crandell, J., & Ataga, K. I. (2012). Preliminary validity and reliability of the Sickle Cell Disease Health-Related Stigma Scale. Issues in Mental Health Nursing, 33(6), 363?369. https://doi.org/10.3109/01612840.2012.656823

Protocol ID

870202

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX870202_External_Stigma_Sickle_Cell_Disease_Doctor_Mental_Instability
	PX870202080000	Doctors think that sickle cell pain is more mostly a mental or emotional problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Doctor_Think_Mental_Emotional_Problem
	PX870202080000	Doctors think that sickle cell pain is more mostly a mental or emotional problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Doctor_Think_Want_More_Medication_Than_Needed
	PX870202070000	Many doctors think that people with sickle more cell pain want more pain medication than is necessary for their physical pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Drug_Addict
	PX870202050000	People think that someone taking more prescription pain medication on a regular basis is a "drug addict". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Excuse
	PX870202020000	People believe that sickle cell is used as more an excuse to get pain medication. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Could_Be_More_Active
	PX870202110000	My family thinks that I could be more more physically active if I wanted. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Drug_Addict
	PX870202120000	My family thinks that by taking pain more medication on a regular basis, I have become a "drug addict". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Embarrassed
	PX870202150000	My family feels embarrassed to tell people more that I have sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Embarrassed
	PX870202150000	My family feels embarrassed to tell people more that I have sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Exaggerate
	PX870202100000	My family feels that I exaggerate how much I more hurt in order to get out of doing things that I don't want to do. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Exaggerate_Pain
	PX870202100000	My family feels that I exaggerate how much I more hurt in order to get out of doing things that I don't want to do. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Less_Respect
	PX870202130000	I feel that my family has less respect for more me since I have sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Mental_Instability
	PX870202140000	My family thinks that sickle cell pain is more more of a mental or emotional problem than a physical problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Overprescribed
	PX870202090000	My family thinks I need less pain medication more than I take. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Physical_Activity
	PX870202110000	My family thinks that I could be more more physically active if I wanted. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Prescription_Drug_Addict
	PX870202120000	My family thinks that by taking pain more medication on a regular basis, I have become a "drug addict". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Respect
	PX870202130000	I feel that my family has less respect for more me since I have sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Think_Mental_Emotional_Problem
	PX870202140000	My family thinks that sickle cell pain is more more of a mental or emotional problem than a physical problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Family_Think_Need_Less_Medication
	PX870202090000	My family thinks I need less pain medication more than I take. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Mental_Instability
	PX870202060000	When people hear that someone has sickle more cell pain, they think that person is also likely to have mental or emotional problems. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Could_Be_More_Active
	PX870202190000	Many nurses believe that people with sickle more cell could be more physically active if they wanted. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Drug_Addict
	PX870202200000	Many nurses think that people with sickle more cell pain are "drug addicts". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Exaggerate
	PX870202160000	Nurses think that people with sickle cell more exaggerate their pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Exaggerate_Pain
	PX870202160000	Nurses think that people with sickle cell more exaggerate their pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Mental_Instability
	PX870202180000	Nurses think that sickle cell pain is mostly more a mental or emotional problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Overprescribed
	PX870202170000	Many nurses think that people with sickle more cell pain want more pain medication than is necessary for their physical pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Patient_Bias
	PX870202210000	Most nurses would prefer not to care for more people with sickle cell disease. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Physical_Activity
	PX870202190000	Many nurses believe that people with sickle more cell could be more physically active if they wanted. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Prefer_Not_Care
	PX870202210000	Most nurses would prefer not to care for more people with sickle cell disease. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Prescription_Drug_Addict
	PX870202200000	Many nurses think that people with sickle more cell pain are "drug addicts". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Think_Mental_Emotional_Problem
	PX870202180000	Nurses think that sickle cell pain is mostly more a mental or emotional problem. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Think_Want_More_Medication_Than_Needed
	PX870202170000	Many nurses think that people with sickle more cell pain want more pain medication than is necessary for their physical pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Overprescribed
	PX870202070000	Many doctors think that people with sickle more cell pain want more pain medication than is necessary for their physical pain. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Patient_Fault
	PX870202010000	People believe that it is mostly the more patient's fault when his/her pain does not get better. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Excuse_Medication
	PX870202020000	People believe that sickle cell is used as more an excuse to get pain medication. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Patient_Fault
	PX870202010000	People believe that it is mostly the more patient's fault when his/her pain does not get better. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Prescription_Drug_Addict
	PX870202050000	People think that someone taking more prescription pain medication on a regular basis is a "drug addict". show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Sign_Weakness
	PX870202040000	People believe that having sickle cell pain more is a sign of weakness. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Think_Less_Unable_Work
	PX870202030000	People think less of someone who is unable more to work because of sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_People_Think_Mental_Emotional_Problem
	PX870202060000	When people hear that someone has sickle more cell pain, they think that person is also likely to have mental or emotional problems. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Poor_Perception
	PX870202030000	People think less of someone who is unable more to work because of sickle cell. show less	N/A
PX870202_External_Stigma_Sickle_Cell_Disease_Weakness_Indicator
	PX870202040000	People believe that having sickle cell pain more is a sign of weakness. show less	N/A

SCD Psychosocial and Social Determinants of Health

Measure Name

Sickle Cell Disease Health-Related External Stigma

Release Date

September 16, 2024

Definition

Stigmatization due to health status or chronic disease burden is referred to as health-related stigma and involves devaluation, judgement, or social disqualification of individuals based on health condition. This protocol specifically addresses stigma associated with sickle cell disease.

Purpose

Stigma can cause detrimental effects on the health of individuals, especially those with chronic disease burden. Effects can include negative social consequences such as status loss, employment discrimination, impairment of healthcare interactions, and reduced physiological and psychological well-being.

Keywords

Stigma, external, sickle cell disease, SCD, health status, Sickle Cell Disease Health-Related Stigma Scale, SCD-HRSS, emotion, Psychosocial, chronic, chronic disease, pain

Measure Protocols

Protocol ID	Protocol Name
870202	Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult

Publications

There are no publications listed for this protocol.