ID

41315

Description

Jordan, A., Eccleston, C., McCraken, L., Connell, H., Clinch, J.. (2008). The Bath Adolescent Pain – Parental Impact Questionnaire (BAP-PIQ). Measurement Instrument Database for the Social Science. Retrieved 18.08.2020, from www.midss.ie Key references: Jordan, A., Eccleston, C., McCraken, L., Connell, H. and Clinch, J., (2008). The Bath Adolescent Pain – Parental Impact Questionnaire (BAP-PIQ): Development and preliminary psychometric evaluation of an instrument to assess the impact of parenting an adolescent with chronic pain. Pain, 137 (3), pp. 478-487 Primary use / Purpose: The BAP-PIQ measures the impact of an adolescent's chronic pain on their parents in terms of emotional and social functioning. It is a 62 item likert-type questionnaire. Background: The authors had previously created questionnaires assessing the impact of chronic pain on adolescents (Eccleston, Jordan, McCracken, Sleed, Connell,& Clinch, 2005). The Bath Adolescent Pain- Parental Impact Questionnaire extends this knowledge base by looking at how it impacts on the parents involved. Psychometrics: Reliability and Validity are confirmed in Jordan, Eccleston, McCraken, Connell, and Clinch (2008) Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.211

Link

www.midss.ie

Keywords

Versions (1)
  1. 8/18/20 8/18/20 -
Copyright Holder

Jordan, A., Eccleston, C., McCraken, L., Connell, H., Clinch, J.

Uploaded on

August 18, 2020

DOI

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License

Creative Commons BY-NC 4.0
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Measurement Instrument Database for the Social Science (MIDSS)

English

Bath Adolescent Pain- Parental Impact Questionnaire (BAP-PIQ)

1 forms  
This questionnaire asks about different ways in which caring for a young person with pain affects your life. There are no right or wrong answers, but please try to be as accurate as possible. Please read each question carefully. Do not spend too much time on any one question as your first answer is usually the most accurate. It is extremely important that you answer all the questions, even if some of them may not seem relevant to you.
Description

This questionnaire asks about different ways in which caring for a young person with pain affects your life. There are no right or wrong answers, but please try to be as accurate as possible. Please read each question carefully. Do not spend too much time on any one question as your first answer is usually the most accurate. It is extremely important that you answer all the questions, even if some of them may not seem relevant to you.

Section One: There are many ways in which caring for a young person with pain can affect people’s lives. Below are some statements that may or may not apply to you. Please read each statement and choose the answer that describes how often you have experienced each of these things in the LAST TWO WEEKS. Please make sure that you answer all questions. Please tell us about feelings and experiences you have encountered. In the last two weeks living with my child in pain I have:
Description

Section One: There are many ways in which caring for a young person with pain can affect people’s lives. Below are some statements that may or may not apply to you. Please read each statement and choose the answer that describes how often you have experienced each of these things in the LAST TWO WEEKS. Please make sure that you answer all questions. Please tell us about feelings and experiences you have encountered. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. felt sad
Description

felt sad

Data type

text

Alias
UMLS CUI [1]
C3536794
2. had difficulty falling asleep
Description

had difficulty falling asleep

Data type

text

Alias
UMLS CUI [1]
C0150079
3. been satisfied with my life
Description

been satisfied with my life

Data type

text

Alias
UMLS CUI [1]
C0392352
4. had little appetite
Description

had little appetite

Data type

text

Alias
UMLS CUI [1]
C0003618
5. felt hopeless
Description

felt hopeless

Data type

text

Alias
UMLS CUI [1]
C0150041
6. had difficulty making decisions
Description

had difficulty making decisions

Data type

text

Alias
UMLS CUI [1]
C0423908
7. made an effort with my appearance
Description

made an effort with my appearance

Data type

text

Alias
UMLS CUI [1,1]
C0700364
UMLS CUI [1,2]
C0015264
8. felt worthless
Description

felt worthless

Data type

text

Alias
UMLS CUI [1]
C1821293
9. avoided activities I usually enjoy
Description

avoided activities I usually enjoy

Data type

text

Alias
UMLS CUI [1,1]
C0870186
UMLS CUI [1,2]
C0023292
Section Two: Please tell us about worries or concerns you may have experienced. In the last two weeks living with my child in pain I have:
Description

Section Two: Please tell us about worries or concerns you may have experienced. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. not been able to get my mind off my worries
Description

not been able to get my mind off my worries

Data type

text

Alias
UMLS CUI [1]
C0233481
2. felt shaky
Description

felt shaky

Data type

text

Alias
UMLS CUI [1]
C0563270
3. found that my mind wandered easily
Description

found that my mind wandered easily

Data type

text

Alias
UMLS CUI [1]
C0857251
4. felt tense
Description

felt tense

Data type

text

Alias
UMLS CUI [1]
C3641757
5. felt anxious
Description

felt anxious

Data type

text

Alias
UMLS CUI [1]
C0003467
6. been bothered by feelings of panic
Description

been bothered by feelings of panic

Data type

text

Alias
UMLS CUI [1]
C0030318
Section Three: Please tell us about any feelings or thoughts you have experienced. In the last two weeks living with my child in pain I have:
Description

Section Three: Please tell us about any feelings or thoughts you have experienced. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. thought that my child's pain would get worse
Description

thought that my child's pain would get worse

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C1279889
2. thought that my child will have difficulty being independent in the future
Description

thought that my child will have difficulty being independent in the future

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0085862
3. been concerned that my child will always experience pain
Description

been concerned that my child will always experience pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C2003902
4. thought that my child's pain may lead to something more serious
Description

thought that my child's pain may lead to something more serious

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
5. been unable to think of anything other than my child's pain
Description

been unable to think of anything other than my child's pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C3641841
Section Four: Please tell us about worries or concerns you have experienced. In the last two weeks living with my child in pain I have:
Description

Section Four: Please tell us about worries or concerns you have experienced. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. thought that I had failed my child
Description

thought that I had failed my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0018379
2. blamed myself for my child's situation
Description

blamed myself for my child's situation

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0018379
3. felt powerless to help my child's pain
Description

felt powerless to help my child's pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0150063
4. not been able to accept that there is no cure for my child's pain
Description

not been able to accept that there is no cure for my child's pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0011317
UMLS CUI [1,4]
C1880198
5. felt guilty
Description

felt guilty

Data type

text

Alias
UMLS CUI [1]
C0018379
6. believed that my child's pain is out of control
Description

believed that my child's pain is out of control

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0442802
7. found it difficult to tolerate my child's suffering
Description

found it difficult to tolerate my child's suffering

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0231303
UMLS CUI [1,3]
C0683278
Section Five: In this section, please tell us about your relationship with your partner / spouse. By partner, we mean someone that you feel close to and who has regular contact with both you and your child, such as your husband, wife, boyfriend or girlfriend. In the last two weeks living with my child in pain I have:
Description

Section Five: In this section, please tell us about your relationship with your partner / spouse. By partner, we mean someone that you feel close to and who has regular contact with both you and your child, such as your husband, wife, boyfriend or girlfriend. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
If you do not have a partner, please choose "Yes" as the answer to this question and go straight to section six.
Description

No Partner

Data type

boolean

Alias
UMLS CUI [1]
C0682323
1. done fun activities with my partner
Description

done fun activities with my partner

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0023292
2. thought that my partner understood my needs
Description

thought that my partner understood my needs

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0162340
UMLS CUI [1,3]
C0027552
3. felt that my partner supported me
Description

felt that my partner supported me

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0037438
4. felt that our physical relationship was strained
Description

felt that our physical relationship was strained

Data type

text

Alias
UMLS CUI [1,1]
C0392367
UMLS CUI [1,2]
C0425168
5. made time to spend with my partner
Description

made time to spend with my partner

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0206209
6. discussed things with my partner
Description

discussed things with my partner

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0009452
7. felt distant from my partner
Description

felt distant from my partner

Data type

text

Alias
UMLS CUI [1,1]
C0682323
UMLS CUI [1,2]
C0558263
Section Six: Please tell us about your social life and leisure time. In the last two weeks living with my child in pain I have:
Description

Section Six: Please tell us about your social life and leisure time. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. spent time with friends
Description

spent time with friends

Data type

text

Alias
UMLS CUI [1,1]
C0079382
UMLS CUI [1,2]
C0040223
2. had little time for socialising
Description

had little time for socialising

Data type

text

Alias
UMLS CUI [1,1]
C0040223
UMLS CUI [1,2]
C2371613
3. felt supported by friends
Description

felt supported by friends

Data type

text

Alias
UMLS CUI [1]
C4708444
4. cut back on my usual leisure activities
Description

cut back on my usual leisure activities

Data type

text

Alias
UMLS CUI [1,1]
C0023292
UMLS CUI [1,2]
C0392756
5. spent time talking to people
Description

spent time talking to people

Data type

text

Alias
UMLS CUI [1,1]
C0040223
UMLS CUI [1,2]
C0871703
6. had an interest in pursuing hobbies
Description

had an interest in pursuing hobbies

Data type

text

Alias
UMLS CUI [1]
C0019826
7. found it difficult to do leisure activities
Description

found it difficult to do leisure activities

Data type

text

Alias
UMLS CUI [1,1]
C0023292
UMLS CUI [1,2]
C0332218
8. spent time doing activities that I enjoy
Description

spent time doing activities that I enjoy

Data type

text

Alias
UMLS CUI [1,1]
C0023292
UMLS CUI [1,2]
C0040223
Section Seven: Please tell us about feelings or thoughts you may have experienced, or other things you may have done when your child was in pain. In the last two weeks living with my child in pain I have:
Description

Section Seven: Please tell us about feelings or thoughts you may have experienced, or other things you may have done when your child was in pain. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. helped my child to avoid pain
Description

helped my child to avoid pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0178494
2. made things as easy as possible for my child
Description

made things as easy as possible for my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0034380
3. thought that my child should avoid activities that might cause more pain
Description

thought that my child should avoid activities that might cause more pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0178494
UMLS CUI [1,4]
C0441655
4. believed that my child needed my help
Description

believed that my child needed my help

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C3828841
5. participated in an activity with my child regardless of his/her pain
Description

participated in an activity with my child regardless of his/her pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C3641650
UMLS CUI [1,3]
C0030193
UMLS CUI [1,4]
C0441655
6. suggested that my child got on with an activity
Description

suggested that my child got on with an activity

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0441655
UMLS CUI [1,3]
C0549178
7. been concerned with my child’s level of pain when planning activities for my child
Description

been concerned with my child’s level of pain when planning activities for my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0441655
UMLS CUI [1,4]
C2699424
8. suggested that my child rests
Description

suggested that my child rests

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0035253
9. done whatever I could to reduce my child’s pain
Description

done whatever I could to reduce my child’s pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0392756
10. believed that my child should do activities regardless of pain
Description

believed that my child should do activities regardless of pain

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C0441655
UMLS CUI [1,4]
C3641650
11. thought that it was ok for my child to have some pain when they were doing something important
Description

thought that it was ok for my child to have some pain when they were doing something important

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0030193
UMLS CUI [1,3]
C1705104
Section Eight: Please tell us about your relationship with your child who experiences pain. In the last two weeks living with my child in pain I have:
Description

Section Eight: Please tell us about your relationship with your child who experiences pain. In the last two weeks living with my child in pain I have:

Alias
UMLS CUI-1
C1828479
1. felt that my child was dependent on me
Description

felt that my child was dependent on me

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C3242642
2. enjoyed being the parent of my child
Description

enjoyed being the parent of my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0337469
UMLS CUI [1,3]
C4316940
3. found it difficult to be patient with my child
Description

found it difficult to be patient with my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0516943
UMLS CUI [1,3]
C0332218
4. felt close to my child
Description

felt close to my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C1821461
5. shown my child affection
Description

shown my child affection

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0871641
6. felt that my relationship with my child was strained
Description

felt that my relationship with my child was strained

Data type

text

Alias
UMLS CUI [1]
C1561688
7. found my relationship with my child difficult
Description

found my relationship with my child difficult

Data type

text

Alias
UMLS CUI [1]
C1561688
8. felt loving towards my child
Description

felt loving towards my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C0024028
9. felt irritated by my child
Description

felt irritated by my child

Data type

text

Alias
UMLS CUI [1,1]
C0680063
UMLS CUI [1,2]
C2700617
Section Nine
Description

Section Nine

Alias
UMLS CUI-1
C1828479
In the space below please tell us about anything else you feel is important for us to know about how caring for a young person with chronic pain impacts on your life.
Description

Other

Data type

text

Alias
UMLS CUI [1,1]
C4049986
UMLS CUI [1,2]
C1947933
UMLS CUI [1,3]
C0376558
UMLS CUI [1,4]
C0150055
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Similar models

Bath Adolescent Pain- Parental Impact Questionnaire (BAP-PIQ)

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
This questionnaire asks about different ways in which caring for a young person with pain affects your life. There are no right or wrong answers, but please try to be as accurate as possible. Please read each question carefully. Do not spend too much time on any one question as your first answer is usually the most accurate. It is extremely important that you answer all the questions, even if some of them may not seem relevant to you.
Item Group
Section One: There are many ways in which caring for a young person with pain can affect people’s lives. Below are some statements that may or may not apply to you. Please read each statement and choose the answer that describes how often you have experienced each of these things in the LAST TWO WEEKS. Please make sure that you answer all questions. Please tell us about feelings and experiences you have encountered. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. felt sad
text
C3536794 (UMLS CUI [1])
had difficulty falling asleep
Code List
1. felt sad
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. had difficulty falling asleep
text
C0150079 (UMLS CUI [1])
had difficulty falling asleep
Code List
2. had difficulty falling asleep
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. been satisfied with my life
text
C0392352 (UMLS CUI [1])
had difficulty falling asleep
Code List
3. been satisfied with my life
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. had little appetite
text
C0003618 (UMLS CUI [1])
had difficulty falling asleep
Code List
4. had little appetite
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. felt hopeless
text
C0150041 (UMLS CUI [1])
had difficulty falling asleep
Code List
5. felt hopeless
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. had difficulty making decisions
text
C0423908 (UMLS CUI [1])
had difficulty falling asleep
Code List
6. had difficulty making decisions
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. made an effort with my appearance
text
C0700364 (UMLS CUI [1,1])
C0015264 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
7. made an effort with my appearance
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
8. felt worthless
text
C1821293 (UMLS CUI [1])
had difficulty falling asleep
Code List
8. felt worthless
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
9. avoided activities I usually enjoy
text
C0870186 (UMLS CUI [1,1])
C0023292 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
9. avoided activities I usually enjoy
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Two: Please tell us about worries or concerns you may have experienced. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. not been able to get my mind off my worries
text
C0233481 (UMLS CUI [1])
had difficulty falling asleep
Code List
1. not been able to get my mind off my worries
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. felt shaky
text
C0563270 (UMLS CUI [1])
had difficulty falling asleep
Code List
2. felt shaky
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. found that my mind wandered easily
text
C0857251 (UMLS CUI [1])
had difficulty falling asleep
Code List
3. found that my mind wandered easily
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. felt tense
text
C3641757 (UMLS CUI [1])
had difficulty falling asleep
Code List
4. felt tense
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. felt anxious
text
C0003467 (UMLS CUI [1])
had difficulty falling asleep
Code List
5. felt anxious
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. been bothered by feelings of panic
text
C0030318 (UMLS CUI [1])
had difficulty falling asleep
Code List
6. been bothered by feelings of panic
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Three: Please tell us about any feelings or thoughts you have experienced. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. thought that my child's pain would get worse
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C1279889 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
1. thought that my child's pain would get worse
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. thought that my child will have difficulty being independent in the future
text
C0680063 (UMLS CUI [1,1])
C0085862 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
2. thought that my child will have difficulty being independent in the future
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. been concerned that my child will always experience pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C2003902 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
3. been concerned that my child will always experience pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. thought that my child's pain may lead to something more serious
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
4. thought that my child's pain may lead to something more serious
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. been unable to think of anything other than my child's pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C3641841 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
5. been unable to think of anything other than my child's pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Four: Please tell us about worries or concerns you have experienced. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. thought that I had failed my child
text
C0680063 (UMLS CUI [1,1])
C0018379 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
1. thought that I had failed my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. blamed myself for my child's situation
text
C0680063 (UMLS CUI [1,1])
C0018379 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
2. blamed myself for my child's situation
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. felt powerless to help my child's pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0150063 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
3. felt powerless to help my child's pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. not been able to accept that there is no cure for my child's pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0011317 (UMLS CUI [1,3])
C1880198 (UMLS CUI [1,4])
had difficulty falling asleep
Code List
4. not been able to accept that there is no cure for my child's pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. felt guilty
text
C0018379 (UMLS CUI [1])
had difficulty falling asleep
Code List
5. felt guilty
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. believed that my child's pain is out of control
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0442802 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
6. believed that my child's pain is out of control
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. found it difficult to tolerate my child's suffering
text
C0680063 (UMLS CUI [1,1])
C0231303 (UMLS CUI [1,2])
C0683278 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
7. found it difficult to tolerate my child's suffering
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Five: In this section, please tell us about your relationship with your partner / spouse. By partner, we mean someone that you feel close to and who has regular contact with both you and your child, such as your husband, wife, boyfriend or girlfriend. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
No Partner
Item
If you do not have a partner, please choose "Yes" as the answer to this question and go straight to section six.
boolean
C0682323 (UMLS CUI [1])
Item
1. done fun activities with my partner
text
C0682323 (UMLS CUI [1,1])
C0023292 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
1. done fun activities with my partner
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. thought that my partner understood my needs
text
C0682323 (UMLS CUI [1,1])
C0162340 (UMLS CUI [1,2])
C0027552 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
2. thought that my partner understood my needs
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. felt that my partner supported me
text
C0682323 (UMLS CUI [1,1])
C0037438 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
3. felt that my partner supported me
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. felt that our physical relationship was strained
text
C0392367 (UMLS CUI [1,1])
C0425168 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
4. felt that our physical relationship was strained
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. made time to spend with my partner
text
C0682323 (UMLS CUI [1,1])
C0206209 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
5. made time to spend with my partner
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. discussed things with my partner
text
C0682323 (UMLS CUI [1,1])
C0009452 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
6. discussed things with my partner
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. felt distant from my partner
text
C0682323 (UMLS CUI [1,1])
C0558263 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
7. felt distant from my partner
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Six: Please tell us about your social life and leisure time. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. spent time with friends
text
C0079382 (UMLS CUI [1,1])
C0040223 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
1. spent time with friends
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. had little time for socialising
text
C0040223 (UMLS CUI [1,1])
C2371613 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
2. had little time for socialising
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. felt supported by friends
text
C4708444 (UMLS CUI [1])
had difficulty falling asleep
Code List
3. felt supported by friends
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. cut back on my usual leisure activities
text
C0023292 (UMLS CUI [1,1])
C0392756 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
4. cut back on my usual leisure activities
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. spent time talking to people
text
C0040223 (UMLS CUI [1,1])
C0871703 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
5. spent time talking to people
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. had an interest in pursuing hobbies
text
C0019826 (UMLS CUI [1])
had difficulty falling asleep
Code List
6. had an interest in pursuing hobbies
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. found it difficult to do leisure activities
text
C0023292 (UMLS CUI [1,1])
C0332218 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
7. found it difficult to do leisure activities
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
8. spent time doing activities that I enjoy
text
C0023292 (UMLS CUI [1,1])
C0040223 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
8. spent time doing activities that I enjoy
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Seven: Please tell us about feelings or thoughts you may have experienced, or other things you may have done when your child was in pain. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. helped my child to avoid pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0178494 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
1. helped my child to avoid pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. made things as easy as possible for my child
text
C0680063 (UMLS CUI [1,1])
C0034380 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
2. made things as easy as possible for my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. thought that my child should avoid activities that might cause more pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0178494 (UMLS CUI [1,3])
C0441655 (UMLS CUI [1,4])
had difficulty falling asleep
Code List
3. thought that my child should avoid activities that might cause more pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. believed that my child needed my help
text
C0680063 (UMLS CUI [1,1])
C3828841 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
4. believed that my child needed my help
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. participated in an activity with my child regardless of his/her pain
text
C0680063 (UMLS CUI [1,1])
C3641650 (UMLS CUI [1,2])
C0030193 (UMLS CUI [1,3])
C0441655 (UMLS CUI [1,4])
had difficulty falling asleep
Code List
5. participated in an activity with my child regardless of his/her pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. suggested that my child got on with an activity
text
C0680063 (UMLS CUI [1,1])
C0441655 (UMLS CUI [1,2])
C0549178 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
6. suggested that my child got on with an activity
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. been concerned with my child’s level of pain when planning activities for my child
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0441655 (UMLS CUI [1,3])
C2699424 (UMLS CUI [1,4])
had difficulty falling asleep
Code List
7. been concerned with my child’s level of pain when planning activities for my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
8. suggested that my child rests
text
C0680063 (UMLS CUI [1,1])
C0035253 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
8. suggested that my child rests
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
9. done whatever I could to reduce my child’s pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0392756 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
9. done whatever I could to reduce my child’s pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
10. believed that my child should do activities regardless of pain
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C0441655 (UMLS CUI [1,3])
C3641650 (UMLS CUI [1,4])
had difficulty falling asleep
Code List
10. believed that my child should do activities regardless of pain
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
11. thought that it was ok for my child to have some pain when they were doing something important
text
C0680063 (UMLS CUI [1,1])
C0030193 (UMLS CUI [1,2])
C1705104 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
11. thought that it was ok for my child to have some pain when they were doing something important
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Eight: Please tell us about your relationship with your child who experiences pain. In the last two weeks living with my child in pain I have:
C1828479 (UMLS CUI-1)
Item
1. felt that my child was dependent on me
text
C0680063 (UMLS CUI [1,1])
C3242642 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
1. felt that my child was dependent on me
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
2. enjoyed being the parent of my child
text
C0680063 (UMLS CUI [1,1])
C0337469 (UMLS CUI [1,2])
C4316940 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
2. enjoyed being the parent of my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
3. found it difficult to be patient with my child
text
C0680063 (UMLS CUI [1,1])
C0516943 (UMLS CUI [1,2])
C0332218 (UMLS CUI [1,3])
had difficulty falling asleep
Code List
3. found it difficult to be patient with my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
4. felt close to my child
text
C0680063 (UMLS CUI [1,1])
C1821461 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
4. felt close to my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
5. shown my child affection
text
C0680063 (UMLS CUI [1,1])
C0871641 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
5. shown my child affection
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
6. felt that my relationship with my child was strained
text
C1561688 (UMLS CUI [1])
had difficulty falling asleep
Code List
6. felt that my relationship with my child was strained
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
7. found my relationship with my child difficult
text
C1561688 (UMLS CUI [1])
had difficulty falling asleep
Code List
7. found my relationship with my child difficult
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
8. felt loving towards my child
text
C0680063 (UMLS CUI [1,1])
C0024028 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
8. felt loving towards my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item
9. felt irritated by my child
text
C0680063 (UMLS CUI [1,1])
C2700617 (UMLS CUI [1,2])
had difficulty falling asleep
Code List
9. felt irritated by my child
CL Item
never (never)
(Comment:en)
CL Item
hardly ever (hardly ever)
(Comment:en)
CL Item
sometimes (sometimes)
(Comment:en)
CL Item
often (often)
(Comment:en)
CL Item
always (always)
(Comment:en)
Item Group
Section Nine
C1828479 (UMLS CUI-1)
Other
Item
In the space below please tell us about anything else you feel is important for us to know about how caring for a young person with chronic pain impacts on your life.
text
C4049986 (UMLS CUI [1,1])
C1947933 (UMLS CUI [1,2])
C0376558 (UMLS CUI [1,3])
C0150055 (UMLS CUI [1,4])
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