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Exploratory Study Of The Perspectives Of Midlife Adults With Intellectual Disability, Their Parents, And Case Managers Regarding Quality Of Life And Needed Supports And Services

Authors: Jane L. Lurquin


This product is a PhD dissertation written by a student at Illinois State University who has a sibling with Down syndrome. The purpose of this qualitative research study was to look at opportunities to enhance the quality of life of aging individuals with intellectual disabilities (ID). In order to enhance quality of life, services and supports should change as the individual changes. Appropriate supports and services improve the quality of life. The data was qualitative collection of personalized stories through semi-structured interviews and field notes.

Research Questions:

1. How do middle-aged people with ID and their caregivers (parents or guardians and case managers) define and describe the quality of life for people with ID?

2. What services and supports does each study participant believe are necessary to enhance the quality of life of the specific individual with intellectual disabilities as they reach and surpass middle age?

3. When comparing the perspectives, what are the similarities and differences within and across each case/triad of participants?

Here's a sample of some of the findings:

1. Choice making is considered essential to quality of life.

2. Adult services are often segregated, but are essential to maintain independence. These services are limited and not always easily accessible.

Click on the "Web Links" tab above to download a copy of the full dissertation.

Contact Info:
Name:Jane L. Lurquin
Organization:Illinois State University

Web Links

Read the full dissertation online (PDF)

This information was found at www.qualitymall.org