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| Name | Class |
|---|---|
| Oxford University Hospitals NHS Trust | OTHER |
| Oskar-Helene-Heim Foundation | OTHER |
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The primary aim is to explore what it is about the experience of chronic pain that may cause emotional distress in some young people but not in others, and how particular individual characteristics, as well as family factors may contribute to young persons' pain experiences and their emotional responses to pain.
This is a three-part observational follow-up study:
Part one will explore (a) whether the current sample reports emotional distress, including feelings of burdensomeness, hopelessness and thoughts and acts of self-harm, and if young people perceive there to be a link between pain and any such feelings of distress, and (b) which aspects of the pain experience, if any, are associated with such distress, using qualitative and quantitative data.
Part two will explore potential individual-level and family-level risk and resilience factors underpinning the hypothesised relationship between aspects of the pain experience and burdensomeness, hopelessness and thoughts and acts of self-harm, using adolescent and parental baseline data.
In part three, adolescent participants will be invited to complete daily diaries on their pain experience, three times per day over 7 days, in order to investigate which aspects of the pain experience are associated with burdensomeness and hopelessness at follow-up.
This study has the potential to improve the care of young people with chronic pain, and in particular the emotional support that young people receive.
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| Measure | Description | Time Frame |
|---|---|---|
| Perceived burdensomeness | Interpersonal Needs Questionnaire (INQ), completed by the adolescents. Scores range from 1="not at all true for me" to 7="very true for me", with higher scores indicating more perceived burdensomeness. | at baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Perceived burdensomeness | Interpersonal Needs Questionnaire (INQ), completed by the adolescents. Scores range from 1="not at all true for me" to 7="very true for me", with higher scores indicating more perceived burdensomeness. | at 7-day follow-up |
| Hopelessness |
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Inclusion Criteria:
Part 1: Adolescents
Part 2: Adults
Additional criteria for Part 3: Follow-up part
· In possession of a smartphone to complete the momentary assessments.
Exclusion Criteria:
Part 1: Adolescents
Part 2: Adults
-If the clinical care team thinks the parent/ caregiver is unsuitable for this study.
Additional criteria for Part 3: Follow-up part
-Inability to provide data via the use of a smartphone
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77 Adolescents with chronic pain and their parents/ caregivers
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Oxford Centre for Children and Young People in Pain | Oxford | Oxfordshire | United Kingdom |
The syntax code and a fully de-identified version of the final dataset may be shared with third parties to support future related research where it is in the public interest.
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| ID | Term |
|---|---|
| D059350 | Chronic Pain |
| D016728 | Self-Injurious Behavior |
| ID | Term |
|---|---|
| D010146 | Pain |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
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Hopelessness Scale for Children (HSC), completed by the adolescents. Participants score each item as 1=True and 0=False. The higher the score, the greater the hopelessness for the future. |
| at baseline |
| Hopelessness | Hopelessness Scale for Children (HSC), completed by the adolescents. Participants score each item as 1=True and 0=False. The higher the score, the greater the hopelessness for the future. | at 7-day follow-up |
| Thoughts and acts of self-harm | 4 single items on the presence/ absence of self-harm thoughts and acts, completed by the adolescents. | at baseline |
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |