Protocol - Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult
- Discrimination
- Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult
- Sickle Cell Disease Health-Related Stigma - Child
Description
The Sickle Cell Disease Health-Related Stigma Scale Short Form (SCD-HRSS-SF) is a 21-item self-administered questionnaire that measures the amount of external stigma experienced by SCD patients. The SCD-HRSS-SF consists of three subscales: Public and Physician/Doctor (P2) Subscale (eight items), Family Subscale (7 items), Nurse Subscale (six items). Each item is scored on a 5 point Likert-style scale from 1 (strongly disagree) to 5 (strongly agree). Each subscale score is the sum of the items in the subscale scale (P2 Range= 8-40; Family Range= 7-35; Nurse Range= 6-30). The total score is the sum of all 3 subscale scores (Range: 21-105).
Specific Instructions
The Psychosocial and SDoH Working Group recognizes that these instruments were not developed using inclusive language. The WG recognizes that investigators may want to implement the protocols with appropriate language, but caution that changes should not otherwise alter the items.
This scale is designed to be completed with sickle cell disease (SCD) patients who experience pain as a complication of their disease. It was designed in the United States and may require adaptations for use with SCD populations outside of the United States.
Availability
Protocol
Sickle Cell Disease Health-Related Stigma Scale Short Form (SCD-HRSS-SF)
Public and Physician/Doctor (P2) Subscale
Please select the number that best reflects your agreement with each statement below.
5 = Strongly Agree
4 = Somewhat Agree
3 = Neutral
2 = Somewhat Disagree
1 = Strongly Disagree
In the first 6 statements below, the word "people" refers to people in general, not members of your family. In the last 2 statements below, the word "doctor" refers to all of the doctors you have seen for sickle cell pain.
1. | People believe that it is mostly the patient's fault when his/her pain does not get better. | 5 | 4 | 3 | 2 | 1 |
2. | People believe that sickle cell is used as an excuse to get pain medication. | 5 | 4 | 3 | 2 | 1 |
3. | People think less of someone who is unable to work because of sickle cell. | 5 | 4 | 3 | 2 | 1 |
4. | People believe that having sickle cell pain is a sign of weakness. | 5 | 4 | 3 | 2 | 1 |
5. | People think that someone taking prescription pain medication on a regular basis is a "drug addict". | 5 | 4 | 3 | 2 | 1 |
6. | When people hear that someone has sickle cell pain, they think that person is also likely to have mental or emotional problems. | 5 | 4 | 3 | 2 | 1 |
7. | Many doctors think that people with sickle cell pain want more pain medication than is necessary for their physical pain. | 5 | 4 | 3 | 2 | 1 |
8. | Doctors think that sickle cell pain is mostly a mental or emotional problem. | 5 | 4 | 3 | 2 | 1 |
Family Subscale
In the following 7 statements, the word "family" refers to the people who are most important and significant to you.
5 = Strongly Agree
4 = Somewhat Agree
3 = Neutral
2 = Somewhat Disagree
1 = Strongly Disagree
1. | My family thinks I need less pain medication than I take. | 5 | 4 | 3 | 2 | 1 |
2. | My family feels that I exaggerate how much I hurt in order to get out of doing things that I don't want to do. | 5 | 4 | 3 | 2 | 1 |
3. | My family thinks that I could be more physically active if I wanted. | 5 | 4 | 3 | 2 | 1 |
4. | My family thinks that by taking pain medication on a regular basis, I have become a "drug addict". | 5 | 4 | 3 | 2 | 1 |
5. | I feel that my family has less respect for me since I have sickle cell. | 5 | 4 | 3 | 2 | 1 |
6. | My family thinks that sickle cell pain is more of a mental or emotional problem than a physical problem. | 5 | 4 | 3 | 2 | 1 |
7. | My family feels embarrassed to tell people that I have sickle cell. | 5 | 4 | 3 | 2 | 1 |
Nurse Subscale
In the following 6 statements, the word "nurse" refers to all of the nurses you have seen for sickle cell pain.
5 = Strongly Agree
4 = Somewhat Agree
3 = Neutral
2 = Somewhat Disagree
1 = Strongly Disagree
1. | Nurses think that people with sickle cell exaggerate their pain. | 5 | 4 | 3 | 2 | 1 |
2. | Many nurses think that people with sickle cell pain want more pain medication than is necessary for their physical pain. | 5 | 4 | 3 | 2 | 1 |
3. | Nurses think that sickle cell pain is mostly a mental or emotional problem. | 5 | 4 | 3 | 2 | 1 |
4. | Many nurses believe that people with sickle cell could be more physically active if they wanted. | 5 | 4 | 3 | 2 | 1 |
5. | Many nurses think that people with sickle cell pain are "drug addicts". | 5 | 4 | 3 | 2 | 1 |
6. | Most nurses would prefer not to care for people with sickle cell disease. | 5 | 4 | 3 | 2 | 1 |
Scoring Instructions
Each subscale score is the sum of the items in the subscale scale (P2 Range= 8-40; Family Range= 7-35; Nurse Range= 6-30).The total score is the sum of all 3 subscale scores (Range: 21-105).
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|
Mode of Administration
Self-administered questionnaire
Lifestage
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
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., O'Brien, 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 | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Drug_Addict | ||||
| PX870202050000 | People think that someone taking more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Excuse | ||||
| PX870202020000 | People believe that sickle cell is used as more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Drug_Addict | ||||
| PX870202120000 | My family thinks that by taking pain more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Embarrassed | ||||
| PX870202150000 | My family feels embarrassed to tell people more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Exaggerate | ||||
| PX870202100000 | My family feels that I exaggerate how much I more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Mental_Instability | ||||
| PX870202140000 | My family thinks that sickle cell pain is more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Overprescribed | ||||
| PX870202090000 | My family thinks I need less pain medication more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Physical_Activity | ||||
| PX870202110000 | My family thinks that I could be more more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Family_Respect | ||||
| PX870202130000 | I feel that my family has less respect for more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Mental_Instability | ||||
| PX870202060000 | When people hear that someone has sickle more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Drug_Addict | ||||
| PX870202200000 | Many nurses think that people with sickle more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Exaggerate | ||||
| PX870202160000 | Nurses think that people with sickle cell more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Mental_Instability | ||||
| PX870202180000 | Nurses think that sickle cell pain is mostly more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Overprescribed | ||||
| PX870202170000 | Many nurses think that people with sickle more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Patient_Bias | ||||
| PX870202210000 | Most nurses would prefer not to care for more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Nurse_Physical_Activity | ||||
| PX870202190000 | Many nurses believe that people with sickle more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Overprescribed | ||||
| PX870202070000 | Many doctors think that people with sickle more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Patient_Fault | ||||
| PX870202010000 | People believe that it is mostly the more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Poor_Perception | ||||
| PX870202030000 | People think less of someone who is unable more | N/A | ||
| PX870202_External_Stigma_Sickle_Cell_Disease_Weakness_Indicator | ||||
| PX870202040000 | People believe that having sickle cell pain more | N/A | ||
Measure Name
Sickle Cell Disease Health-Related External Stigma
Release Date
January 1, 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
N/A
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.