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Protocol - Sickle Cell Disease Responses to Stress - Parent Report

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Description

The Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC), Parent Report version, is a parent-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

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.

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-P)

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 your child 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 his/her family and friends 1 2 3 4
e. Feeling confused about what sickle cell disease is and why he/she got it 1 2 3 4
f. Not understanding what doctors tell him/her 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 he/she generally thinks he/she has 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 aspects of having sickle cell disease that have been stressful for your child lately that you checked off above. For each item below, circle one number from 1 (not at all) to 4 (a lot) that shows how much he/she does or feels these things when he/she has the problems with sickle cell like the ones you indicated above. Please let us know about everything he/she does, thinks, and feels, even if you don’t think it helps make things better.

How much does he/she do this?
WHEN DEALING WITH THE STRESS OF SICKLE CELL DISEASE: Not at all A Little Some A lot
1. He/she tries not to feel anything. 1 2 3 4
2. When dealing with the stress of having sickle cell disease, he/she feels sick to his/her stomach or get headaches. 1 2 3 4
3. He/she tries to think of different ways to change or fix the situation.
Write one plan he/she thought of: _____________________________________ 		1 2 3 4
4. When faced with the stress of having sickle cell disease, he/she doesn’t feel anything at all, it's like he/she has no feelings. 1 2 3 4
5. He/she wishes that he/she were stronger and less sensitive so that things would be different. 1 2 3 4
6. He/she keeps remembering what happened with sickle cell disease or can’t stop thinking about what might happen. 1 2 3 4
7. He/she lets someone or something know how he/she feels. (remember to circle a number.) ---->
Check all he/she talked to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
8. He/she decides he/she is okay the way he/she is, even though he/she’s not perfect. 1 2 3 4
9. When he/she is around other people he/she acts like having sickle cell disease never happened. 1 2 3 4
10. He/she just has to get away from everything when he/she is dealing with the stress of having sickle cell disease. 1 2 3 4
11. He/she deals 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. He/she gets really jumpy when he/she is dealing with the stress of having sickle cell disease. 1 2 3 4
13. He/she realizes that he/she just has to live with things the way they are. 1 2 3 4
14. When he/she is dealing with the stress of having sickle cell disease, he/she just can’t be near anything that reminds him/her of what is happening. 1 2 3 4
15. He/she tries not to think about it, to forget all about it. 1 2 3 4
16. When he/she is dealing with the stress of having sickle cell disease, he/she really doesn’t know what he/she feels. 1 2 3 4
17. He/she asks other people of things for help or for ideas about how to make things better (remember to circle a number.) --->
Check all he/she 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 he/she is trying to sleep, he/she can’t stop thinking about the stressful aspects of having sickle cell disease or he/she has bad dreams about having sickle cell disease. 1 2 3 4
19. He/she tells himself/herself that he/she can get through this, or that he/she will be okay. 1 2 3 4
20. He/she lets his/her feelings out. (remember to circle a number.)
He/she does this by: (Check all that he/she did.)
[ ] Writing in his/her 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. He/she gets help from other people or things when he/she is trying to figure out how to deal with his/her feelings. (remember to circle a number.) ---->
Check all that he/she went to:
[ ] Parent [ ] Friend [ ] Brother/Sister
[ ] Pet [ ] Clergy Member [ ] Teacher
[ ] God [ ] Stuffed Animal [ ] Other family member
[ ] None of these
1 2 3 4
22. He/she just can’t get himself/herself to face the stress of having sickle cell disease. 1 2 3 4
23. He/she wishes 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 your child lately. Remember to answer the questions below thinking about these things.

How much does he/she do this?
WHEN DEALING WITH THE STRESS OF SICKLE CELL DISEASE: Not at all A Little Some A lot
24. He/she does something to try to fix the stressful parts of having sickle cell disease.
Write one thing he/she did:_________________________ 		1 2 3 4
25. Thoughts about having sickle cell disease just pop into his/her head. 1 2 3 4
26. When he/she is dealing with the stress of having sickle cell disease, he/she feels it in his/her body. (remember to circle a number.) ---->
Check all that happen:
[ ] His/her heart races [ ] His/her breathing speeds up
[ ] He/she feels hot or sweaty [ ] His/her muscles get tight
[ ] None of these
1 2 3 4
27. He/she tries to stay away from people and things that make him/her feel upset or remind him/her of the stressful aspects of having sickle cell disease. 1 2 3 4
28. He/she doesn’t feel like himself/herself when he/she is dealing with the stress of having sickle cell disease, it’s like he/she is far away from everything. 1 2 3 4
29. He/she just takes things as they are; he/she goes with the flow. 1 2 3 4
30. He/she thinks about happy things to take his/her mind off the stressful parts of having sickle cell disease or how he/she is feeling. 1 2 3 4
31. When something stressful happens related to having sickle cell disease, he/she can’t stop thinking about how he/she is feeling. 1 2 3 4
32. He/she gets sympathy, understanding, or support from someone. (remember to circle a number.) ---->
Check all he/she 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, he/she can’t always control what he/she does. (remember to circle a number.) ---->
Check all that happen:
 [ ] He/she can’t stop eating
[ ] He/she can’t stop talking
[ ] He/she does dangerous things
[ ] He/she had to keep fixing/checking things
[ ] None of these 		1 2 3 4
34. He/she tells himself/herself that things could be worse. 1 2 3 4
35. His/her mind just goes blank when something stressful happens related to having sickle cell disease, he/she can’t think at all. 1 2 3 4
36. He/she tells himself/herself that it doesn’t matter, that it isn’t a big deal. 1 2 3 4
37. When he/she is faced with the stressful parts of sickle cell disease, right away he/she feels really: (remember to circle a number.) ---->
Check all that he/she feels:
[ ] Angry [ ] Sad [ ] None of these
[ ] Worried/anxious [ ] Scared
1 2 3 4
38. It’s really hard for him/her to concentrate or pay attention when something stressful happens related to having sickle cell disease. 1 2 3 4
39. He/she thinks about the things he/she is learning from having sickle cell disease, or something good that will come from it. 1 2 3 4

How much does he/she 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, he/she can’t stop thinking about what he/she did or said. 1 2 3 4
41. When stressful parts of sickle cell disease happen, he/she says to himself/herself, “This isn’t real.” 1 2 3 4
42. When he/she is dealing with the stressful parts of sickle cell disease, he/she ends up just lying around or sleeping a lot. 1 2 3 4
43. He/she keeps his/her mind off stressful parts of having sickle cell disease by: (remember to circle a number.) ---->
Check all that he/she does:
[ ] 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, he/she gets upset by things that don’t usually bother him/her. 1 2 3 4
45. He/she does something to calm himself/herself down when he/she is dealing with the stress of having sickle cell disease. (remember to circle a number.) ---->
Check all that he/she does:
[ ] Take deep breaths [ ] Pray [ ] Walk
[ ] Listen to music [ ] Take a break [ ] Meditate
[ ] None of these
1 2 3 4
46. He/she just freezes when he/she is dealing with stressful parts of sickle cell disease, he/she can’t do anything. 1 2 3 4
47. When stressful things happen related to having sickle cell disease he/she sometimes act without thinking. 1 2 3 4
48. He/she keeps his/her feelings under control when he/she has to, then lets them out when they won’t make things worse. 1 2 3 4
49. When something stressful happens related to having sickle cell disease, he/she can’t seem to get around to doing things he/she is supposed to do. 1 2 3 4
50. He/she tells himself/herself that everything will be all right. 1 2 3 4
51. When something stressful happens related to having sickle cell disease, he/she can’t stop thinking about why this is happening. 1 2 3 4
52. He/she thinks of ways to laugh about it so that it won’t seem so bad. 1 2 3 4
53. His/her thoughts start racing when he/she is faced with the stressful parts of having sickle cell disease. 1 2 3 4
54. He/she imagines something really fun or exciting happening in his/her life. 1 2 3 4
55. When something stressful happens related to having sickle cell disease, he/she can get so upset that he/she can’t remember what happened or what he/she did. 1 2 3 4
56. He/she tries to believe that it never happened. 1 2 3 4
57. When he/she is dealing with the stress of having sickle cell disease, sometimes he/she can’t control what he/she does or says. 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

Parents of 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, parent-report 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), Parent Report version

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

870702

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_After_Something_Stressful_Happens_Related_Cant_Stop_Thinking
PX870702500000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: After something stressful happens related to having sickle cell disease, he/she can't stop thinking about what he/she did or said." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Around_Other_People_Act_Not_Have
PX870702190000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is around other people he/she acts like having sickle cell disease never happened." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Ask_Other_People_Things_Make_Better
PX870702270000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she asks other people or things for help or for ideas about how to make things better (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Ask_Other_People_Things_Make_Better_Talk_To
PX870702270100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she asks other people or things for help or for ideas about how to make things better. Check all he/she talked to: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Cant_Near_Anything_Reminding
PX870702240000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stress of having sickle cell disease, he/she just can't be near anything that reminds him/her of what is happening." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Circle_Control_Over_Problems
PX870702100000 "Circle the number that shows how much more
control he/she generally thinks he/she has over these problems." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Concerns_Family_Friends
PX870702040000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Concerns about his/her family and friends" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Concerns_Future
PX870702080000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Concerns about the future" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Concerns_Future_Other
PX870702090000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Other: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Concerns_Future_Other_Write
PX870702090100 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Other (Specify): " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dealing_Feel_Body
PX870702360000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stress of having sickle cell disease, he/she feels it in his/her body. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dealing_Feel_Body_Check_All
PX870702360100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stress of having sickle cell disease, he/she feels it in his/her body. Check all that happen: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dealing_Stressful_Parts_Lying_Around_Sleeping
PX870702520000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stressful parts of sickle cell disease, he/she ends up just lying around or sleeping a lot." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dealing_With_Cant_Control_What_Do_Say
PX870702670000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stress of having sickle cell disease, sometimes he/she can't control what he/she does or says." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Deal_Wishing_Go_Away_Work_Itself
PX870702210000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she deals 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
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Decide_Okay_Way_Not_Perfect
PX870702180000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she decides he/she is okay the way he/she is, even though he/she's not perfect." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dont_Feel_Anything
PX870702140000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When faced with the stress of having sickle cell disease, he/she doesn't feel anything at all, it's like he/she has no feelings." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dont_Feel_Self_Away_Everything
PX870702380000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she doesn't feel like himself/herself when he/she is dealing with the stress of having sickle cell disease, it's like he/she is far away from everything. " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Dont_Know_What_Feel
PX870702260000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is dealing with the stress of having sickle cell disease, he/she really doesn't know what he/she feels." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Do_Something_Calm_Self_Down
PX870702550000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she does something to calm himself/herself down when he/she is dealing with the stress of having sickle cell disease. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Do_Something_Calm_Self_Down_Check_All
PX870702550100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she does something to calm himself/herself down when he/she is dealing with the stress of having sickle cell disease. Check all that he/she does: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Do_Something_Fix_Stressful_Parts
PX870702340000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she does something to try to fix the stressful parts of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Do_Something_Fix_Stressful_Parts_Write_One
PX870702340100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she does something to try to fix the stressful parts of having sickle cell disease. Write one thing he/she did: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Faced_Stressful_Parts_Feel_Really
PX870702470000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is faced with the stressful parts of sickle cell disease, right away he/she feels really: (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Faced_Stressful_Parts_Feel_Really_Check_All
PX870702470100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is faced with the stressful parts of sickle cell disease, right away he/she feels really: Check all that he/she feels: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Feeling_Confused_Why_Got_It
PX870702050000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Feeling confused about what sickle cell disease is and why he/she got it" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Feel_Sick_Stomach_Headaches
PX870702120000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When dealing with the stress of having sickle cell disease, he/she feels sick to his/her stomach or gets headaches" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Freeze_Dealing_Stressful_Parts_Cant_Do_Anything
PX870702560000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she just freezes when he/she is dealing with stressful parts of sickle cell disease, he/she can't do anything." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Get_Away_Everything_Dealing
PX870702200000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she just has to get away from everything when he/she is dealing with the stress of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Get_help_Other_People_Figure_Out_Deal_With
PX870702310000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she gets help from other people or things when he/she is trying to figure out how to deal with his/her feelings. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Get_help_Other_People_Figure_Out_Deal_With_Check_All
PX870702310100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she gets help from other people or things when he/she is trying to figure out how to deal with his/her feelings. Check all that he/she went to: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Get_Jumpy
PX870702220000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she gets really jumpy when he/she is dealing with the stress of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Get_Self_Face
PX870702320000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she just can't get himself/herself to face the stress of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Go_To_Hospital_often
PX870702020000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Having to go to the hospital or clinic so often" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Having_Pain_Crises
PX870702070000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Having sickle cell pain crises" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Imagine_Something_Really_Exciting_Happening
PX870702640000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she imagines something really fun or exciting happening in his/her life." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Keep_Feelings_Under_Control
PX870702580000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she keeps his/her feelings under control when he/she has to, then lets them out when they won't make things worse." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Keep_My_Mind_Off_Stressful_Parts
PX870702530000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she keeps his/her mind off stressful parts of having sickle cell disease by: (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Keep_My_Mind_Off_Stressful_Parts_Check_All
PX870702530100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she keeps his/her mind off stressful parts of having sickle cell disease by: Check all that he/she does: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Let_Feelings_Out
PX870702300000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she lets his/her feelings out. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Let_Feelings_Out_Check_All
PX870702300100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she lets his/her feelings out. He/she does this by: (Check all that he/she did.)" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Let_Someone_Something_Know_Feel
PX870702170000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she lets someone or something know how he/she feels. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Let_Someone_Something_Know_Feel_Talk_To
PX870702170100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she lets someone or something know how he/she feels. Check all he/she talked to: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Mind_Goes_Blank_Something_Happens_Related
PX870702450000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: His/her mind just goes blank when something stressful happens related to having sickle cell disease, he/she can't think at all." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Missing_School_Falling_Behind_Work
PX870702030000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Missing school days or falling behind in school work" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Not_Able_Do_Things_Other_Kids_Do
PX870702010000 "Please circle the number indicating how more
stressful the following things have been for your child 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
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Not_Understanding_Doctors_Tell
PX870702060000 "Please circle the number indicating how more
stressful the following things have been for your child in the past 6 months. Not understanding what doctors tell him/her about sickle cell disease" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Realize_Live_Things_Way_They_Are
PX870702230000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she realizes that he/she just has to live with things the way they are." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Really_Hard_Concentrate_Pay_Attention_Something_Happened_Related
PX870702480000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: It's really hard for him/her to concentrate or pay attention when something stressful happens related to having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Remembering_What_Happened
PX870702160000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she keeps remembering what happened with sickle cell disease or can't stop thinking about what might happen" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Someone_Come_Take_Away_Stressful_Aspects
PX870702330000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she wishes that someone would just come and take away the stressful aspects of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Happens_Related_Cant_Stop_Thinking
PX870702410000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can't stop thinking about how he/she is feeling." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Always_Control_What_Do
PX870702430000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can't always control what he/she do. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Always_Control_What_Do_Check_All
PX870702430100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can't always control what he/she do. Check all that happen: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Cant_Get_Around_Doing_Things
PX870702590000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can't seem to get around to doing things he/she is supposed to do." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Cant_Stop_Thinking_Why
PX870702610000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can't stop thinking about why this is happening." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Get_Upset
PX870702540000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she gets upset by things that don't usually bother him/her." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Something_Stressful_Happens_Related_Get_Upset_Cant_Remember_What_Happened
PX870702650000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When something stressful happens related to having sickle cell disease, he/she can get so upset that he/she can't remember what happened or what he/she did." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Stay_Away_People_Things_Feel_Upset_Remind_Aspects
PX870702370000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries to stay away from people and things that make him/her feel upset or remind him/her of the stressful aspects of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Stressful_Parts_Happen_Say_Self_Isnt_Real
PX870702510000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When stressful parts of sickle cell disease happen, he/she says to himself/herself, "This isn't real."" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Sympathy_Understanding_Support_Someone
PX870702420000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she gets sympathy, understanding, or support from someone. (remember to circle a number.) ---->" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Sympathy_Understanding_Support_Someone_Check_All
PX870702420100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she gets sympathy, understanding, or support from someone. Check all he/she went to: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Take_Things_Go_Flow
PX870702390000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she just takes things as they are; he/she goes with the flow." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Tell_Self_Doesnt_Matter_Not_Big_Deal
PX870702460000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tells himself/herself that it doesn't matter, that it isn't a big deal." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Tell_Self_Everything_Right
PX870702600000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tells himself/herself that everything will be all right." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Tell_Self_Get_Through
PX870702290000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tells himself/herself that he/she can get through this, or that he/she will be okay." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Tell_Self_Things_Worse
PX870702440000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tells himself/herself that things could be worse." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Things_Happen_Related_Sometimes_Act_Without_Thinking
PX870702570000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When stressful things happen related to having sickle cell disease he/she sometimes act without thinking." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Think_About_Things_Learning_Something_Good_Will_Come
PX870702490000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she thinks about the things he/she is learning from having sickle cell disease, or something good that will come from it." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Think_Different_Ways_Change_Fix_Situation
PX870702130000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries to think of different ways to change or fix the situation." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Think_Different_Ways_Change_Fix_Situation_Write_Plan
PX870702130100 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries to think of different ways to change or fix the situation. Write one plan he/she thought of: " show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Think_Happy_Things_Mind_Off
PX870702400000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she thinks about happy things to take his/her mind off the stressful parts of having sickle cell disease or how he/she is feeling." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Think_Ways_Laugh_About
PX870702620000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she thinks of ways to laugh about it so that it won't seem so bad." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Thoughts_Pop_Head
PX870702350000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: Thoughts about having sickle cell disease just pop into his/her head." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Thoughts_Start_Racing_Faced_Stressful_Parts
PX870702630000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: His/her thoughts start racing when he/she is faced with the stressful parts of having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Trying_Sleep_Cant_Stop_Thinking_Bad_Dreams
PX870702280000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: When he/she is trying to sleep, he/she can't stop thinking about the stressful aspects of having sickle cell disease or he/she has bad dreams about having sickle cell disease." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Try_Believe_Never_Happened
PX870702660000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries to believe that it never happened." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Try_Not_Feel_Anything
PX870702110000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries not to feel anything" show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Try_Not_Think_About
PX870702250000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she tries not to think about it, to forget all about it." show less
N/A
PX870702_Responses_Stress_Sickle_Cell_Disease_Parents_Wish_Were_Stronger_Less_Sensitive
PX870702150000 "WHEN DEALING WITH THE STRESS OF SICKLE CELL more
DISEASE: He/she wishes that he/she 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.