Caregiving Networks Across Disease Context and the Life Course

Launched by NATIONAL HUMAN GENOME RESEARCH INSTITUTE (NHGRI) · Aug 14, 2021

Keywords

ClinConnect Summary

This clinical trial is studying how being a caregiver affects the health and well-being of people who provide care to someone with a long-term illness, such as inherited metabolic disorders or diabetes. Researchers want to understand the stress caregivers experience and how it impacts their lives over time. If you are an adult aged 18 or older, and you currently take care of someone with a chronic medical condition, you may be eligible to participate in this study.

As a participant, you will complete online surveys about your health and caregiving experiences, take part in phone interviews, and possibly keep a diary to track your daily activities and stress levels. You might also be asked to provide a blood sample once a year. The study will last for one year, but you may be invited to participate for up to five years. This is a great opportunity to share your experiences and help researchers learn more about the challenges faced by caregivers.

Gender

ALL

Eligibility 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.