Understanding Needs

Study Overview
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Brief Summary
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The Understanding Needs Project is designed to gain an understanding of the needs of informal caregivers. Researchers have designed a survey to highlight activities of daily living involved in the caregiving role, pain related to caregiver, and potential services desired. The initial phase of the study will consist of a focus group of informal caregivers to discuss current needs. The survey will then be refined based on knowledge gained from the focus group, and feedback from expert researchers. The refined survey will then be disseminated to caregivers throughout the country. Please click on the following anonymous link to participate: https://chhscolostate.co1.qualtrics.com/jfe/form/SV_54j83BQSItMuoUB

Detailed Description
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The Understanding Needs Project highlights the needs of informal caregivers. An informal caregiver is defined as a person who regularly provides unpaid care to another adult. The survey will ask about pain intensity, pain interference, and relation of pain to the caregiving role. The survey will also address which activities the caregiver assists with, and activities now lacking since becoming a caregiver. One focus group will be completed to refine the contents of the survey prior to dissemination. The results will be analyzed by an occupational therapist, with a focus on how pain may connect to assistance with daily living activities provided to the care recipient. The needs of caregivers within the community will be compiled to inform future involvement in remediation of needs.

Official Title
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Understanding the Needs of Informal Caregivers

Conditions
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Caregivers

Intervention / Treatment
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* Other: Understanding Needs Survey


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: At least 18 years old Informal caregivers (unpaid) have been a caregiver for > 6 months provide at least 8 hours of care/week able to read english Exclusion Criteria: Less than 18 years old paid caregivers not able to read english Caregiver or care recipient has a terminal diagnosis with a life expectancy of less than one year

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention Model: Single Group Assignment
Interventional Model Description: A single focus group. A single group will be analyzed based on survey results
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Caregivers for Understanding Needs<br>5-8 informal caregiver participants in focus group will discuss current perceived needs. Up to 150 participants will complete the Understanding Needs survey | Other: Understanding Needs Survey<br>* 2-hour Focus Group Mailed or E-mailed Survey<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| PEG: Three Item Pain Measure | A self-rating of pain intensity, pain interference in enjoyment of life, and pain interference in general activity | Self-report, up to one year for analyses when all surveys are returned | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Caregivers, Chronic Pain