Exploring the impact of caregiving on health and well-being over time
Caregiving Networks Across Disease Context and the Life Course: A Comparative Longitudinal Study
This study is looking at how being a caregiver affects the health and well-being of adults over time, by having them share their experiences and feelings through surveys and interviews.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 2800 (estimated) |
| Ages | 18 Years to 100 Years |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT05007990 on ClinicalTrials.gov |
What this trial studies
This observational study aims to investigate how the caregiving process affects the health and well-being of caregivers over time. Participants, who are adults aged 18 and older, will complete online surveys and interviews to assess their experiences, emotions, and the burden associated with caregiving for individuals with chronic medical conditions. The study will also explore the social support networks of caregivers and may evaluate biomarkers related to stress. The research will span up to five years, allowing for a comprehensive understanding of caregiver stress and its implications.
Who should consider this trial
Good fit: Ideal candidates for this study are adults who are primary caregivers for individuals with chronic medical conditions, whether living or deceased.
Not a fit: Patients who are not caregivers or who do not have a caregiving role will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the health impacts of caregiving, potentially leading to better support systems for caregivers.
How similar studies have performed: Other studies have shown success in understanding caregiver stress and its effects, indicating that this approach is supported by existing research.
Eligibility criteria
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA: To be eligible to participate in this study, an individual must meet all of the following criteria: * Adults aged 18 years and older * If the Care Recipient is living, they must self-identify as a primary caregiver to the Care Recipient (individual with a chronic medical condition), OR if the Care Recipient is deceased, they must self-identify as having been a primary caregiver to the now-deceased Care Recipient, OR they must otherwise be identified (i.e., referred) by a participant as a part of the caregiving network * Ability to consent to research * Fluency in English will be needed to complete interview as well as to read, comprehend surveys and consent forms, as appropriate validated measures in other languages are not readily available. * Physically capable of participating in applicable assessments EXCLUSION CRITERIA: An individual who meets any of the following criteria will be excluded from this study: * Care Recipients (as defined in this protocol) * Staff of NHGRI Staff of NHGRI are unable to participate in this study as a safeguard against the risk of ethical concerns. As per OHSRP SOP 404, NIH staff may be a vulnerable class of study subjects. Excluding staff of the Institute conducting the study assures there will not be any perceived or actual conflict of interest, pressure/coercion to participate among co-workers, subordinates, work unit-members, etc. As further noted in OHSRP SOP 404, exclusion further protects this class of subjects privacy and confidentiality; and protects the study s scientific integrity. Persons with impaired neuro-sensory or decision-making ability (adults unable to provide consent) will not be enrolled in the study. Persons with impaired neuro-sensory or decision making ability would not be able to participate with independent responses to the various social behavioral measures we use in the study interview and survey. Learning information about these individuals through other people instead of themselves would introduce bias to this study.
Where this trial is running
Bethesda, Maryland
- National Institutes of Health Clinical Center — Bethesda, Maryland, United States (Recruiting)
Study contacts
- Principal investigator: Laura M Koehly, Ph.D. — National Human Genome Research Institute (NHGRI)
- Study coordinator: Laura M Koehly, Ph.D.
- Email: koehlyl@mail.nih.gov
- Phone: (301) 451-3999
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.