RecruitingNCT05007990

Caregiving Networks Across Disease Context and the Life Course

Caregiving Networks Across Disease Context and the Life Course: A Comparative Longitudinal Study


Sponsor

National Human Genome Research Institute (NHGRI)

Enrollment

2,800 participants

Start Date

Sep 8, 2022

Study Type

OBSERVATIONAL

Conditions

Summary

Background: In the U.S., about 53 million informal, unpaid caregivers provide care to a person who is ill, is disabled, or has age-related loss of function. These caregivers may be adult children, spouses, parents, or others. The stress of providing long-term care affects caregivers health and well-being. Researchers want to learn more about this stress and its effects. Objective: To learn how the caregiving process affects the health and well-being of caregivers over time. Eligibility: Adults aged 18 years and older who are caregivers for a person with a chronic medical condition and who have already given consent to take part in other study activities. Design: Participants will be put in different groups. They will complete some or all of the following tasks over 1 year. They may repeat these tasks once a year for up to 5 years. Participants will fill out 2 online surveys. One will ask about their health and their caregiving experience. The other will ask them to list people in their social network and their care recipient s social network who give them support. Participants will have a 2-part phone interview. It will be audio recorded. In part 1, they will be asked about the people they listed in the survey. In part 2, they will be asked about their caregiving experience and events in the care recipient s life. Participants may fill out a weeklong diary every 3 months. It will ask about their daily social activities, well-being, and stress levels. It will also ask about their thoughts and feelings about caregiving. Participants may give a blood sample each year they are in the study. ...


Eligibility

Min Age: 18 YearsMax Age: 100 Years

Plain Language Summary

Simplified for easier understanding

This study is exploring how caregiving networks — the web of people who support someone with a chronic medical condition — function across different diseases and life stages. Researchers are particularly interested in understanding the experiences, health, and needs of family caregivers, as well as how their networks change over time. Participants will complete interviews and surveys about their caregiving experiences. You may be eligible if: - You are 18 years old or older - You are a primary caregiver for someone with a chronic medical condition (or were a caregiver for someone who has since passed away) - You were referred by another study participant as part of a caregiving network - You are fluent in English - You are physically and cognitively capable of participating in study assessments You may NOT be eligible if: - You are yourself the person being cared for (the care recipient) - You are a staff member of the National Human Genome Research Institute (NHGRI) - You are unable to provide independent informed consent due to cognitive or neurological impairment Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(1)

National Institutes of Health Clinical Center

Bethesda, Maryland, United States

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NCT05007990


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