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Protocol - Sickle Cell Disease Responses to Stress - Youth

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Description

The Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC) is a self-reported instrument that includes eight sickle cell disease stressors and 57 questions that capture voluntary (coping) and involuntary (automatic) stress responses. The RSQ-SC contains items to measure three types of coping and two types of involuntary stress responses. The measure thus yields five factors: primary control coping, secondary control coping, disengagement coping, involuntary engagement, and involuntary disengagement.

Specific Instructions

Each item is scored on a 4-point Likert-style scale (1 = “Not at all” ; 4 = “Very” or “A lot”) that indicates the degree/frequency the item was experienced or employed by the individual. Proportion scores can then be created for each factor, thus controlling for individual differences in rates of endorsing items. Detailed scoring information can be obtained by emailing stressandcopinglab@vanderbilt.edu.

Availability

Available

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Protocol
ID: ______________
Date: _____________

RESPONSES TO STRESS - [SC] (SR-C)

This is a list of things about having sickle cell disease that children and teenagers sometimes find stressful or a problem to deal with. Please circle the number indicating how stressful the following things have been for you in the past 6 months.

Not at all A Little Somewhat Very
a. Not being able to do the things that other kids can do or are allowed to do 1 2 3 4
b. Having to go to the hospital or clinic so often 1 2 3 4
c. Missing school days or falling behind in school work 1 2 3 4
d. Concerns about my family and friends 1 2 3 4
e. Feeling confused about what sickle cell disease is and why I got it 1 2 3 4
f. Not understanding what doctors tell me about sickle cell disease 1 2 3 4
g. Having Sickle Cell Pain crises 1 2 3 4
h. Concerns about the future 1 2 3 4
i. Other:____________________________________ 1 2 3 4
j. 1 2 3 4
k. 1 2 3 4
l. 1 2 3 4

Circle the number that shows how much control you generally think you have over these problems.
1 2 3 4
None A little Some A lot

Below is a list of things that children and teenagers sometimes do, think, or feel when they are dealing with sickle cell disease. Everyone deals with problems in their own way - some people do a lot of the things on this list or have a bunch of feelings, other people just do or think a few of these things.

Think of all the stressful parts of having sickle cell disease that you indicated above. For each item below, circle one number from 1 (not at all) to 4 (a lot) that shows how much you do or feel these things when you have the problems with sickle cell like the ones you indicated above. Please let us know about everything you do, think, and feel, even if you don’t think it helps make things better.

How much do you do this?
WHEN DEALING WITH THE STRESS OF SICKLE CELL DISEASE: Not at all A Little Some A lot
1. I try not to feel anything. 1 2 3 4
2. When dealing with the stress of having sickle cell disease, I feel sick to my stomach or get headaches. 1 2 3 4
3. I try to think of different ways to change or fix the situation.
Write one plan you thought of: _____________________________________ 		1 2 3 4
4. When faced with the stress of having sickle cell disease, I don’t feel anything at all, it's like I have no feelings. 1 2 3 4
5. I wish that I were stronger and less sensitive so that things would be different. 1 2 3 4
6. I keep remembering what happened with sickle cell disease or can’t stop thinking about what might happen. 1 2 3 4
7. I let someone or something know how I feel. (remember to circle a number.) ---->
Check all you talked to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
8. I decide I’m okay the way I am, even though I’m not perfect. 1 2 3 4
9. When I’m around other people I act like I do not have sickle cell disease. 1 2 3 4
10. I just have to get away from everything when I am dealing with the stress of having sickle cell disease. 1 2 3 4
11. I deal with the stress of having sickle cell disease by wishing it would just go away, that everything would work itself out. 1 2 3 4
12. I get really jumpy when I am dealing with the stress of having sickle cell disease. 1 2 3 4
13. I realize that I just have to live with things the way they are. 1 2 3 4
14. When I am dealing with the stress of having sickle cell disease, I just can’t be near anything that reminds me of sickle cell. 1 2 3 4
15. I try not to think about it, to forget all about it. 1 2 3 4
16. When I am dealing with the stress of having sickle cell disease, I really don’t know what I feel. 1 2 3 4
17. I ask other people of things for help or for ideas about how to make things better (remember to circle a number.) ---->
Check all you talked to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
18. When I am trying to sleep, I can’t stop thinking about the stressful aspects of having sickle cell disease or I have bad dreams about having sickle cell disease. 1 2 3 4
19. I tell myself that I can get through this, or that I will be okay. 1 2 3 4
20. I let my feelings out. (remember to circle a number.)
I do this by: (Check all that you did.)
[ ] Writing in my journal/diary [ ] Drawing/painting
[ ] Complaining to let off steam [ ] Being sarcastic/making fun
[ ] Listening to music [ ] Punching a pillow
[ ] Exercising [ ] Yelling
[ ] Crying [ ] None of these
1 2 3 4
21. I get help from other people or things when I’m trying to figure out how to deal with my feelings. (remember to circle a number.) ---->
Check all you went to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
22. I just can’t get myself to face the stress of having sickle cell disease. 1 2 3 4
23. I wish that someone would just come and take away the stressful aspects of having sickle cell disease. 1 2 3 4

You’re half done. Before you keep working, look back at the first page so you remember the aspects of having sickle cell disease that have been stressful for you lately. Remember to answer the questions below thinking about these things.

How much do you do this?
WHEN DEALING WITH THE STRESS OF SICKLE CELL DISEASE: Not at all A Little Some A lot
24. I do something to try to fix the stressful parts of having sickle cell disease.
Write one thing you did:____________________________ 		1 2 3 4
25. Thoughts about having sickle cell disease just pop into my head. 1 2 3 4
26. When I am dealing with the stress of having sickle cell disease, I feel it in my body. (remember to circle a number.) ---->
Check all that happen:
[ ] My heart races [ ] My breathing speeds up
[ ] I feel hot or sweaty [ ] My muscles get tight
[ ] None of these
1 2 3 4
27. I try to stay away from people and things that make me feel upset or remind me of the stressful aspects of having sickle cell disease. 1 2 3 4
28. I don’t feel like myself when I am dealing with the stress of having sickle cell disease, it’s like I am far away from everything. 1 2 3 4
29. I just take things as they are; I go with the flow. 1 2 3 4
30. I think about happy things to take my mind off the stressful parts of having sickle cell disease or how I’m feeling. 1 2 3 4
31. When something stressful happens related to having sickle cell disease, I can’t stop thinking about how I am feeling. 1 2 3 4
32. I get sympathy, understanding, or support from someone. (remember to circle a number.) ---->
Check all you went to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
33. When something stressful happens related to having sickle cell disease, I can’t always control what I do. (remember to circle a number.) ---->
Check all that happen:
 [ ] I can’t stop eating
[ ] I can’t stop talking
[ ] I do dangerous things
[ ] I have to keep fixing/checking things
[ ] None of these
 1 2 3 4
34. I tell myself that things could be worse. 1 2 3 4
35. My mind just goes blank when something stressful happens related to having sickle cell disease, I can’t think at all. 1 2 3 4
36. I tell myself that it doesn’t matter, that it isn’t a big deal. 1 2 3 4
37. When I am faced with the stressful parts of having sickle cell disease, right away I feel really: (remember to circle a number.) ---->
Check all that you feel:
[ ] Angry [ ] Sad [ ] None of these
[ ] Worried/anxious [ ] Scared
1 2 3 4
38. It’s really hard for me to concentrate or pay attention when something stressful happens related to having sickle cell disease. 1 2 3 4
39. I think about the things I’m learning from having sickle cell disease, or something good that will come from it. 1 2 3 4

How much do you do this?
WHEN DEALING WITH THE STRESS OF SICKLE CELL DISEASE: Not at all A Little Some A lot
40. After something stressful happens related to having sickle cell disease, I can’t stop thinking about what I did or said. 1 2 3 4
41. When stressful parts of having sickle cell disease happen, I say to myself, “This isn’t real.” 1 2 3 4
42. When I’m dealing with the stressful parts of having sickle cell disease, I end up just lying around or sleeping a lot. 1 2 3 4
43. I keep my mind off stressful parts of having sickle cell disease by: (remember to circle a number.) ---->
Check all that you do:
[ ] Exercising [ ] Seeing friends
[ ] Watching TV [ ] Playing video games
[ ] Doing a hobby [ ] Listening to music
[ ] None of these
1 2 3 4
44. When something stressful happens related to having sickle cell disease, I get upset by things that don’t usually bother me. 1 2 3 4
45. I do something to calm myself down when I’m dealing with the stress of having sickle cell disease. (remember to circle a number.) ---->
Check all that you do:
[ ] Take deep breaths [ ] Pray [ ] Walk
[ ] Listen to music [ ] Take a break [ ] Meditate
[ ] None of these
1 2 3 4
46. I just freeze when I am dealing with stressful parts of having sickle cell disease, I can’t do anything. 1 2 3 4
47. When stressful things happen related to having sickle cell disease I sometimes act without thinking. 1 2 3 4
48. I keep my feelings under control when I have to, then let them out when they won’t make things worse. 1 2 3 4
49. When something stressful happens related to having sickle cell disease, I can’t seem to get around to doing things I’m supposed to do. 1 2 3 4
50. I tell myself that everything will be all right. 1 2 3 4
51. When something stressful happens related to having sickle cell disease, I can’t stop thinking about why this is happening. 1 2 3 4
52. I think of ways to laugh about it so that it won’t seem so bad. 1 2 3 4
53. My thoughts start racing when I am faced with the stressful parts of having sickle cell disease. 1 2 3 4
54. I imagine something really fun or exciting happening in my life. 1 2 3 4
55. When something stressful happens related to having sickle cell disease, I can get so upset that I can’t remember what happened or what I did. 1 2 3 4
56. I try to believe that it never happened. 1 2 3 4
57. When I am dealing with the stress of having sickle cell disease, sometimes I can’t control what I do or say. 1 2 3 4

Copyright © 2000 Bruce Compas. All rights reserved.

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 with sickle cell disease, ages 9-19

Selection Rationale

The Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC) is a validated, reliable, self-administered questionnaire that has been used to assess coping in children and adolescents with sickle cell disease.

Language

English, Other languages available at source

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC)

Source

Connor-Smith, J. K., Compas, B. E., Wadsworth, M. E., Thomsen, A. H., & Saltzman, H. (2000). Responses to stress in adolescence: measurement of coping and involuntary stress responses. Journal of Consulting and Clinical Psychology, 68(6), 976-992.

The Reponses to Stress Questionnaire can be downloaded from the Stress and Coping Research Lab website hosted by Vanderbilt University (https://my.vanderbilt.edu/stressandcoping/).

General References

Prussien, K. V., DeBaun, M. R., Yarboi, J., Bemis, H., McNally, C., Williams, E., & Compas, B. E. (2018). Cognitive function, coping, and depressive symptoms in children and adolescents with sickle cell disease. Journal of Pediatric Psychology, 43(5), 543-551. doi:10.1093/jpepsy/jsx141

Prussien, K. V., Siciliano, R. E., Ciriegio, A. E., Lee, C. A., DeBaun, M. R., Jordan, L. C., & Compas, B. E. (2021). Preliminary study of coping, perceived control, and depressive symptoms in youth with sickle cell anemia. Journal of Developmental and Behavioral Pediatrics, 42(6), 485-489. doi:10.1097/DBP.0000000000000922

Protocol ID

870701

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_After_Something_Stressful_Happens_Related_Cant_Stop_Thinking
PX870701500000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: After something stressful happens related to having sickle cell disease, I can't stop thinking about what I did or said." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Around_Other_People_Act_Not_Have
PX870701190000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I'm around other people I act like I do not have sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Ask_Other_People_Things_Make_Better
PX870701270000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I ask other people of things for help or for ideas about how to make things better (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Ask_Other_People_Things_Make_Better_Talk_To
PX870701270100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I ask other people of things for help or for ideas about how to make things better. Check all you talked to:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Cant_Near_Anything_Reminding
PX870701240000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am dealing with the stress of having sickle cell disease, I just can't be near anything that reminds me of sickle cell." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Circle_Control_Over_Problems
PX870701100000 "Circle the number that shows how much more
control you generally think you have over these problems." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Concerns_Family_Friends
PX870701040000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Concerns about my family and friends" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Concerns_Future
PX870701080000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Concerns about the future" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Concerns_Future_Other
PX870701090000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Other: " show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Concerns_Future_Other_Write
PX870701090100 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Other (Specify): " show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dealing_Feel_Body
PX870701360000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am dealing with the stress of having sickle cell disease, I feel it in my body. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dealing_Feel_Body_Check_All
PX870701360100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am dealing with the stress of having sickle cell disease, I feel it in my body. Check all that happen:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dealing_Stressful_Parts_Lying_Around_Sleeping
PX870701520000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I'm dealing with the stressful parts of having sickle cell disease, I end up just lying around or sleeping a lot." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dealing_With_Cant_Control_What_Do_Say
PX870701670000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am dealing with the stress of having sickle cell disease, sometimes I can't control what I do or say." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Deal_Wishing_Go_Away_Work_Itself
PX870701210000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I deal with the stress of having sickle cell disease by wishing it would just go away, that everything would work itself out." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Decide_Okay_Way_Not_Perfect
PX870701180000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I decide I'm okay the way I am, even though I'm not perfect." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dont_Feel_Anything
PX870701140000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When faced with the stress of having sickle cell disease, I don't feel anything at all, it's like I have no feelings." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dont_Feel_Myself_Away_Everything
PX870701380000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I don't feel like myself when I am dealing with the stress of having sickle cell disease, it's like I am far away from everything." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Dont_Know_What_Feel
PX870701260000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am dealing with the stress of having sickle cell disease, I really don't know what I feel." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Do_Something_Calm_Myself_Down
PX870701550000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I do something to calm myself down when I'm dealing with the stress of having sickle cell disease. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Do_Something_Calm_Myself_Down_Check_All
PX870701550100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I do something to calm myself down when I'm dealing with the stress of having sickle cell disease. Check all that you do:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Do_Something_Fix_Stressful_Parts
PX870701340000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I do something to try to fix the stressful parts of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Do_Something_Fix_Stressful_Parts_Write_One
PX870701340100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I do something to try to fix the stressful parts of having sickle cell disease. Write one thing you did:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Faced_Stressful_Parts_Feel_Really
PX870701470000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am faced with the stressful parts of having sickle cell disease, right away I feel really: (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Faced_Stressful_Parts_Feel_Really_Check_All
PX870701470100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am faced with the stressful parts of having sickle cell disease, right away I feel really: Check all that you feel:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Feeling_Confused_Why_Got_It
PX870701050000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Feeling confused about what sickle cell disease is and why I got it" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Feel_Sick_Stomach_Headaches
PX870701120000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When dealing with the stress of having sickle cell disease, I feel sick to my stomach or get headaches." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Freeze_Dealing_Stressful_Parts_Cant_Do_Anything
PX870701560000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I just freeze when I am dealing with stressful parts of having sickle cell disease, I can't do anything." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Get_Away_Everything_Dealing
PX870701200000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I just have to get away from everything when I am dealing with the stress of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Get_help_Other_People_Figure_Out_Deal_With
PX870701310000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I get help from other people or things when I'm trying to figure out how to deal with my feelings. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Get_help_Other_People_Figure_Out_Deal_With_Check_All
PX870701310100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I get help from other people or things when I'm trying to figure out how to deal with my feelings. Check all you went to:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Get_Jumpy
PX870701220000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I get really jumpy when I am dealing with the stress of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Get_Myself_Face
PX870701320000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I just can't get myself to face the stress of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Go_To_Hospital_Often
PX870701020000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Having to go to the hospital or clinic so often" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Having_Pain_Crises
PX870701070000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Having sickle cell pain crises" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Imagine_Something_Really_Exciting_Happening
PX870701640000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I imagine something really fun or exciting happening in my life." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Keep_Feelings_Under_Control
PX870701580000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I keep my feelings under control when I have to, then let them out when they won't make things worse." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Keep_My_Mind_Off_Stressful_Parts
PX870701530000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I keep my mind off stressful parts of having sickle cell disease by: (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Keep_My_Mind_Off_Stressful_Parts_Check_All
PX870701530100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I keep my mind off stressful parts of having sickle cell disease by: Check all that you do:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Let_Feelings_Out
PX870701300000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I let my feelings out. (remember to circle a number.)" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Let_Feelings_Out_Check_All
PX870701300100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I let my feelings out. I do this by: (Check all that you did.)" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Let_Someone_Something_Know_Feel
PX870701170000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I let someone or something know how I feel. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Let_Someone_Something_Know_Feel_Talk_To
PX870701170100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I let someone or something know how I feel. Check all you talked to:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Mind_Goes_Blank_Something_Happens_Related
PX870701450000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: My mind just goes blank when something stressful happens related to having sickle cell disease, I can't think at all." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Missing_School_Falling_Behind_Work
PX870701030000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Missing school days or falling behind in school work" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Not_Able_Do_Things_Other_Kids_Do
PX870701010000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Not being able to do the things that other kids can do or are allowed to do" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Not_Understanding_Doctors_Tell
PX870701060000 "Please circle the number indicating how more
stressful the following things have been for you in the past 6 months. Not understanding what doctors tell me about sickle cell disease" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Realize_Live_Things_Way_They_Are
PX870701230000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I realize that I just have to live with things the way they are." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Really_Hard_Concentrate_Pay_Attention_Something_Happened_Related
PX870701480000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: It's really hard for me to concentrate or pay attention when something stressful happens related to having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Remembering_What_Happened
PX870701160000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I keep remembering what happened with sickle cell disease or can't stop thinking about what might happen." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Someone_Come_Take_Away_Stressful_Aspects
PX870701330000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I wish that someone would just come and take away the stressful aspects of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Happens_Related_Cant_Stop_Thinking
PX870701410000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can't stop thinking about how I am feeling." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Always_Control_What_Do
PX870701430000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can't always control what I do. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Always_Control_What_Do_Check_All
PX870701430100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can't always control what I do. Check all that happen:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Cant_Get_Around_Doing_Things
PX870701590000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can't seem to get around to doing things I'm supposed to do." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Cant_Stop_Thinking_Why
PX870701610000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can't stop thinking about why this is happening." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Get_Upset
PX870701540000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I get upset by things that don't usually bother me." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Something_Stressful_Happens_Related_Get_Upset_Cant_Remember_What_Happened
PX870701650000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, I can get so upset that I can't remember what happened or what I did." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Stay_Away_People_Things_Feel_Upset_Remind_Aspects
PX870701370000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try to stay away from people and things that make me feel upset or remind me of the stressful aspects of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Stressful_Parts_Happen_Say_Myself_Isnt_Real
PX870701510000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When stressful parts of having sickle cell disease happen, I say to myself, "This isn't real."" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Sympathy_Understanding_Support_Someone
PX870701420000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I get sympathy, understanding, or support from someone. (remember to circle a number.) ---->" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Sympathy_Understanding_Support_Someone_Check_All
PX870701420100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I get sympathy, understanding, or support from someone. Check all you went to:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Take_Things_Go_Flow
PX870701390000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I just take things as they are; I go with the flow." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Tell_Myself_Doesnt_Matter_Not_Big_Deal
PX870701460000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I tell myself that it doesn't matter, that it isn't a big deal." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Tell_Myself_Everything_Right
PX870701600000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I tell myself that everything will be all right." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Tell_Myself_Get_Through
PX870701290000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I tell myself that I can get through this, or that I will be okay." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Tell_Myself_Things_Worse
PX870701440000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I tell myself that things could be worse." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Things_Happen_Related_Sometimes_Act_Without_Thinking
PX870701570000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When stressful things happen related to having sickle cell disease I sometimes act without thinking." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Think_About_Things_Learning_Something_Good_Will_Come
PX870701490000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I think about the things I'm learning from having sickle cell disease, or something good that will come from it." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Think_Different_Ways_Change_Fix_Situation
PX870701130000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try to think of different ways to change or fix the situation." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Think_Different_Ways_Change_Fix_Situation_Write_Plan
PX870701140100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try to think of different ways to change or fix the situation. Write one plan you thought of:" show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Think_Happy_Things_Mind_Off
PX870701400000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I think about happy things to take my mind off the stressful parts of having sickle cell disease or how I'm feeling." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Think_Ways_Laugh_About
PX870701620000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I think of ways to laugh about it so that it won't seem so bad." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Thoughts_Pop_Head
PX870701350000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: Thoughts about having sickle cell disease just pop into my head." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Thoughts_Start_Racing_Faced_Stressful_Parts
PX870701630000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: My thoughts start racing when I am faced with the stressful parts of having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Trying_Sleep_Cant_Stop_Thinking_Bad_Dreams
PX870701280000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When I am trying to sleep, I can't stop thinking about the stressful aspects of having sickle cell disease or I have bad dreams about having sickle cell disease." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Try_Believe_Never_Happened
PX870701660000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try to believe that it never happened." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Try_Not_Feel_Anything
PX870701110000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try not to feel anything." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Try_Not_Think_About
PX870701250000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I try not to think about it, to forget all about it." show less
N/A
PX870701_Responses_Stress_Sickle_Cell_Disease_Youth_Wish_Were_Stronger_Less_Sensitive
PX870701150000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: I wish that I were stronger and less sensitive so that things would be different." show less
N/A
SCD Psychosocial and Social Determinants of Health
Measure Name

Sickle Cell Disease Responses to Stress

Release Date

February 6, 2023

Definition

Responses to stress include voluntary coping attempts and involuntary reactions influenced by temperament and conditioned behavior.

Purpose

Many chronic conditions, including sickle cell disease, involve significant stress. Individual differences in responses to stress and coping may influence an individual’s ability to manage disease burden and a greater understanding of these constructs may help inform interventions.

Keywords

stress, coping, temperament, behavior, emotion, sickle cell disease, SCD, Psychosocial

Measure Protocols
Protocol ID Protocol Name
870701 Sickle Cell Disease Responses to Stress - Youth
870702 Sickle Cell Disease Responses to Stress - Parent Report
Publications

There are no publications listed for this protocol.