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

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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

Available

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 patients 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 dont 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 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

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
StandardNameIDSource
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 Research45(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 IDVariable DescriptiondbGaP 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.