IDD & Community Research
IDD (Intellectual and Developmental Disabilities) & Community Research focuses on involving people with intellectual and developmental disabilities (IDD) and their communities in research processes to improve health outcomes and address identified disparities. Key elements include using community-engaged research (CEnR) methods, including people with IDD in leadership and as experts, promoting accessible research materials, and collaborating with community and caregiving organizations to set research priorities that matter to the IDD community. The goal is to create patient-centered research that is relevant, equitable, and meets the needs of people with IDD.
Measuring independence & Quality of Life for IDD Adults
Measuring independence and quality of life (QoL) for adults with intellectual and developmental disabilities (IDD) involves using various assessment tools like the Personal Outcomes Scale (POS) for QoL and the Adult Independence Living Measurement Scale (AILMS) for independent living skills. These tools assess multidimensional aspects of QoL and independence, including personal well-being, social relationships, learning opportunities, and access to community-based services. They often use a combination of self-report and proxy reports from caregivers and require validated instruments with good psychometric properties to accurately capture the individual’s perspective and needs.
Evaluating Caregiver Training & Support Programs
Evaluating caregiver training and support programs involves using frameworks like RE-AIM to assess reach, effectiveness, adoption, implementation, and maintenance. Key factors for evaluation include instructor qualifications and experience, access and availability of programs, the quality and relevance of training content, availability of diverse training types and levels, caregiver feedback mechanisms, support for caregiver well-being and self-efficacy, and overall program outcomes like improved skills and reduced caregiver distress. Quantitative data on participation and efficiency, alongside qualitative insights from stakeholders, provide a comprehensive view of a program’s success and areas for improvement.
Assessing Impact of Community Integration Services
Assessing the impact of community integration services requires a mixed-methods approach using both quantitative data and qualitative feedback to measure outcomes across multiple domains of a person’s life. The evaluation should involve multiple perspectives, including those of participants, service providers, and community members.
Key domains for assessment. Evaluations should measure impact in these broad areas:
- Social well-being and relationships: Assess the quality and quantity of a person’s social interactions and the depth of their relationships.
- Health and wellness: Measure improvements in physical and mental health. This can include reduced hospital admissions, improved health management, and a greater sense of confidence.
- Employment and productivity: Evaluate improvements in job placement, skill development, and other meaningful productive activities.
- Choice and control: Measure the extent to which participants have more autonomy and make their own choices in daily life.
- Quality of life and satisfaction: Gauge participants’ overall life satisfaction and happiness with their services and support systems.
- Home and independence: Examine the stability and quality of participants’ housing and their ability to live independently.
- Inclusion and integration: Assess whether participants feel a part of their community and have access to various community spaces and activities.
