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Behavioural Intervention

Care Planning Tools for Intellectual Disability

N/A
Recruiting
Research Sponsored by Northwell Health
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Be older than 18 years old
Timeline
Screening 3 weeks
Treatment Varies
Follow Up baseline, 1 month,6 months and 18 months.
Awards & highlights

Study Summary

This trial will compare two long-term care planning tools to see which one works better for people with disabilities and their families. Goal: Improve health, social supports & quality of life.

Who is the study for?
This trial is for family caregivers of individuals with intellectual and/or developmental disabilities who are over 10 years old, living in a community setting. Participants must speak English or Spanish and have access to a tablet, computer, or smartphone.Check my eligibility
What is being tested?
The study tests a web-based tool called Map Our Life aimed at improving long-term care planning when used alongside traditional case management services. It's compared to standard services plus an attention-control health promotion website.See study design
What are the potential side effects?
Since this trial involves educational tools rather than medical treatments, there are no direct physical side effects expected from participating in the study.

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~baseline, 1 month,6 months and 18 months.
This trial's timeline: 3 weeks for screening, Varies for treatment, and baseline, 1 month,6 months and 18 months. for reporting.

Treatment Details

Study Objectives

Outcome measures can provide a clearer picture of what you can expect from a treatment.
Primary outcome measures
Quality of Life Outcomes - Caregiver burden
Secondary outcome measures
Health Behaviors Outcomes - Caregiver long term care knowledge
Health Behaviors Outcomes - Caregiver long term care planning behaviors
Health Behaviors Outcomes - Problem-focused coping behaviors
+2 more

Trial Design

2Treatment groups
Active Control
Placebo Group
Group I: Enhanced usual care and Map Our LifeActive Control1 Intervention
Participants will be introduced to Map Our Life, by research staff. In accordance to the Preparation for Future Care Model, PYL: (1) introduces users to long-term care (LTC) related choices (care expectation); (2) assesses the unique caregiving needs of the care recipient (awareness); (3) educates the users on locally and nationally available home-based resources (information gathering); (4) makes choices about LTC preferences (decision-making), and (5) shares those choices with others (concrete planning).This process is associated with informed and value-based decisions that fit the preferences of the care recipient and increased well-being according to the theory of proactive coping, which states that preparation for future stressors improves the ability to cope in real-time.
Group II: Enhanced usual care and Attention ControlPlacebo Group1 Intervention
In this arm, caregivers will be referred to a website containing information from "Disability and Health Information for Family Caregivers". The content in the attention control is from CDC-sponsored websites that promote healthy activities and behaviors targeting people with disabilities and their family caregivers. Additionally, the content leads users to CDC-sponsored "Caregiving" webpages which assist families in developing care plans. All content is available in English and Spanish.

Find a Location

Who is running the clinical trial?

Children's Hospital of PhiladelphiaOTHER
708 Previous Clinical Trials
8,581,970 Total Patients Enrolled
4 Trials studying Intellectual Disability
15,730 Patients Enrolled for Intellectual Disability
Geisinger HealthUNKNOWN
1 Previous Clinical Trials
1,739 Total Patients Enrolled
Children's Hospital Medical Center, CincinnatiOTHER
815 Previous Clinical Trials
6,530,541 Total Patients Enrolled
2 Trials studying Intellectual Disability
1,280 Patients Enrolled for Intellectual Disability

Frequently Asked Questions

These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

Are there any openings for participants in this endeavor?

"The trial hosted on clinicaltrials.gov, which was initially posted November 1st 2023 and amended October 17th 2023, is not accepting new patients at this time. Nevertheless, 40 alternative active clinical trials are currently enrolling participants."

Answered by AI
Recent research and studies
clinicaltrials.govStudy
Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers
2023. "Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers". ClinicalTrials.gov. https://clinicaltrials.gov/ct2/show/NCT06065527.
~700 spots leftby Jun 2027
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