Understanding Needs

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

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Key information

Conditions

Caregivers Chronic Pain Neurologic Manifestations Pain Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Colorado State University

Fort Collins, Colorado, 80524, United States

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Understanding Needs Survey

Other

2-hour Focus Group

Mailed or E-mailed Survey

Primary outcomes

PEG: Three Item Pain Measure

Time frame: Self-report, up to one year for analyses when all surveys are returned

A self-rating of pain intensity, pain interference in enjoyment of life, and pain interference in general activity

Sponsors and collaborators

Lead sponsor

Colorado State University

Other

Registry information

Official study title

Understanding the Needs of Informal Caregivers

Important dates

Study start: 2017
Primary completion: 2019
Study completion: 2019
First posted: Apr 18, 2017
Registry last updated: Jul 23, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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Completed