Viewing Study NCT01498263



Ignite Creation Date: 2024-05-06 @ 12:07 AM
Last Modification Date: 2024-10-26 @ 10:45 AM
Study NCT ID: NCT01498263
Status: COMPLETED
Last Update Posted: 2024-07-12
First Post: 2011-12-21

Brief Title: Inherited Diseases Caregiving and Social Networks
Sponsor: National Human Genome Research Institute NHGRI
Organization: National Institutes of Health Clinical Center CC

Study Overview

Official Title: Inherited Diseases Caregiving and Social Networks
Status: COMPLETED
Status Verified Date: 2024-08-07
Last Known Status: None
Delayed Posting: No
If Stopped, Why?: Not Stopped
Has Expanded Access: False
If Expanded Access, NCT#: N/A
Has Expanded Access, NCT# Status: N/A
Acronym: None
Brief Summary: Approximately 66 million informal caregivers care for someone who is ill disabled or aged These caregivers experience significant distress associated with caregiving which may be particularly salient in the context of inherited conditions Previous studies have not examined caregiving from a network perspective nor have they considered how cognitive and emotional responses such as caregivers worry for themselves and relatives acquiring the disease or guilt related to the genetic etiology of their child s illness as possible stressors the current project fills this literature gap

Caregiving processes may vary across type of illness and the life course In illnesses that impact children parents and grandparents may take on caregiving roles whereas in conditions that impact adults spouses and adult children may provide care Caregivers must adapt to the strain of caring for their affected relatives and this adaptation may differ depending on caregiver roles The caregiver s support network may influence adaptation impacting the health and well-being of patients their caregivers and other relatives

This project comprised of 5 substudies will examine social contexts surrounding families involved in caring for individuals with chronic inherited conditions from a relational perspective Surveys and interviews will assess participants cognitions and emotions about the disease caregiving burden and caregivingsupport network systems In addition biomarkers will be considered in 2 substudies to examine how caregiving roles and expectations impact health among caregivers As part of our current inquiry we have

developed an assessment tool aimed at understanding caregiver experiences related to dietary practices in the context of metabolic conditions To evaluate the psychometric properties of this scale we propose a fifth substudy under the current protocol

We aim to recruit at least 5550 participants through residentialdaycare centers advocacy groups and the NIH Clinical Center We will recruit formal caregivers multiple biological and non-biological adult relatives of affected individuals and typically developing controls to construct and evaluate caregivingsupport network systems This project will use a social network framework to develop and adapt common measures of caregiving roles to evaluate burden perceptual bias and unmet expectations in caregiving The psychometric properties of these new measures characteristics of family caregiving and support networks and how these network characteristics are associated with caregiving strain and well-being including biomarkers of physical health will be investigated The moderating role of family members cognitions and emotions and disease context will be considered Findings will guide future research to develop network-based interventions promoting positive adaptation to the presence of inherited conditions in families through improved social environments and coping skills
Detailed Description: Approximately 66 million informal caregivers care for someone who is ill disabled or aged These caregivers experience significant distress associated with caregiving which may be particularly salient in the context of inherited conditions Previous studies have not examined caregiving from a network perspective nor have they considered how cognitive and emotional responses such as caregivers worry for themselves and relatives acquiring the disease or guilt related to the genetic etiology of their child s illness as possible stressors the current project fills this literature gap

Caregiving processes may vary across type of illness and the life course In illnesses that impact children parents and grandparents may take on caregiving roles whereas in conditions that impact adults spouses and adult children may provide care Caregivers must adapt to the strain of caring for their affected relatives and this adaptation may differ depending on caregiver roles The caregiver s support network may influence adaptation impacting the health and well-being of patients their caregivers and other relatives

This project comprised of 5 substudies will examine social contexts surrounding families involved in caring for individuals with chronic inherited conditions from a relational perspective Surveys and interviews will assess participants cognitions and emotions about the disease caregiving burden and caregivingsupport network systems In addition biomarkers will be considered in 2 substudies to examine how caregiving roles and expectations impact health among caregivers As part of our current inquiry we have developed an assessment tool aimed at understanding caregiver experiences related to dietary practices in the context of metabolic conditions To evaluate the psychometric properties of this scale we propose a fifth substudy under the current protocol

We aim to recruit at least 5550 participants through residentialdaycare centers advocacy groups and the NIH Clinical Center We will recruit formal caregivers multiple biological and non-biological adult relatives of affected individuals and typically developing controls to construct and evaluate caregivingsupport network systems This project will use a social network framework to develop and adapt common measures of caregiving roles to evaluate burden perceptual bias and unmet expectations in caregiving The psychometric properties of these new measures characteristics of family caregiving and support networks and how these network characteristics are associated with caregiving strain and well-being including biomarkers of physical health will be investigated The moderating role of family members cognitions and emotions and disease context will be considered Findings will guide future research to develop network-based interventions promoting positive adaptation to the presence of inherited conditions in families through improved social environments and coping skills

Study Oversight

Has Oversight DMC: None
Is a FDA Regulated Drug?: False
Is a FDA Regulated Device?: False
Is an Unapproved Device?: None
Is a PPSD?: None
Is a US Export?: None
Is an FDA AA801 Violation?: None
Secondary IDs
Secondary ID Type Domain Link
12-HG-0022 None None None