Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers

Part of paid clinical trials in New Hyde Park, New York.

Sponsor
Northwell Health
Study ID
NCT06065527
Status
Recruiting
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Conditions

  • Intellectual Disability

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Map Our Life — BEHAVIORAL
    The intervention takes participants through the process of planning using the Preparation for Future Care Model stages: care expectation, awareness, information gathering, decision making, and concrete planning. The intervention has 8 modules: (1) Letter of Intent for Your Loved One, (2) Caregiver Support and Well-Being, (3) Medical Decision Making for Your Loved One, (4) Daily Routines and Medical Management, (5) Medicaid Waiver for Your Loved One, (6) Financial Planning for Your Loved One, (7) Emergency Planning for Your Loved One, and (8) Managing Jobs, Day Programs, and Transportation. Map Our Life takes users - the caregiver alongside the individual with intellectual disability - through the stages of planning in each of the 8 modules until a concrete care plan is developed. The last component of the intervention is that this Care Plan is subsequently saved and shared with others such as care managers, clinicians, friends or family members.
  • Attention Control — BEHAVIORAL
    The control group will have access to a CDC Website, CDC Healthy Living with a Disability.

Study Details

This study will compare the effectiveness of a web-based long-term care planning tool (Map Our Life) partnered with traditional case management services to traditional case management services partnered with an attention-control Centers for Disease Control and Prevention (CDC) sponsored website on health promotion for people with disabilities. The goal of this clinical trial is to promote long-term care (LTC) knowledge and planning among individuals with intellectual/developmental disabilities (IDD) and their family caregivers to improve social supports, health, and quality of life outcomes.

Key Dates

Start date
Dec 22, 2023
Status verified
Dec 2023
Primary completion
Jun 30, 2027
Completion
Apr 30, 2029

Study Design

Enrollment
1,050 participants (estimated)
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH

Arms

  • Active Comparator: Enhanced usual care and Map Our Life
    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.
  • Placebo Comparator: Enhanced usual care and Attention Control
    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.

Primary Outcome Measure

Quality of Life Outcomes - Caregiver burden [ Time Frame: Baseline, 1 month, 6 months and 18 months. ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Cohen Children's Medical CenterNew Hyde ParkNew York11040
Sophia Jan, MD, MSHP
[email protected]
516-465-5308

Find similar trials in New Hyde Park, NY

By research site
Cohen Children's Medical Center· New Hyde Park, NY

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