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

Must not have

Speaks a language other than English or Spanish

Timeline

Screening 3 weeks

Treatment Varies

Follow Up baseline, 1 month,6 months and 18 months.

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.

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.

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.

Eligibility Criteria

Exclusion Criteria

You may be eligible for the trial if you check “No” for criteria below:

Select...

I speak a language that is not English or Spanish.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ baseline, 1 month,6 months and 18 months.

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

Study objectives can provide a clearer picture of what you can expect from a treatment.

Primary study objectives

Quality of Life Outcomes - Caregiver burden

Secondary study objectives

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.

0 / 1Eligibility criteria met