Transcript Assessing the Impacts of Community Living on the Life

EXAMINING QUALITY OF LIFE
FROM THREE PERSPECTIVES:
A Study of Deinstitutionalization of
Persons with Disabilities
Dawn Hall Apgar, PhD
Paul Lerman, DSW
Tameeka Jordan, MA
Developmental Disabilities Planning Institute
Center for Architecture and Building Science Research
New Jersey Institute of Technology
323 Martin Luther King Boulevard
Newark, New Jersey 07102
(973) 642-7616
(973) 596-8443 (fax)
http://www.ddpi.njit.edu
[email protected]
Presentation
Background
Evaluation of Institutional Closure
Overview of Research Design
Respondent Groups
Quality of Life Domains
Findings
Reliability of Proxy Responses
Impact of Deinstitutionalization on QoL
Implications and Limitations
Background


Part of a deinstitutionalization effort in New Jersey
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523 consumers living at North Princeton Developmental
Center (489 persons in original sampling frame)
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Closure announced in 1995 and consumers moved between
January 1997 and June 2000
Data was collected between 1994 and 2000
Respondent Groups
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Examined impact of deinstitutionalization on
consumer abilities, challenging behaviors, living
environments, and quality of life
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Interviewed 3 respondent groups using comparable
measures

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Staff (face to face)
Family members/guardians (phone)
Consumers (face to face)
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Reliability Testing
Quality of Life Domains
A ut o no my
F re e d o m
C ho ic e s
M a t e ria l W e llB e ing
Emo t io na l W e llB e ing
He a lt h
P hy s ic a l
M e nt a l
C o mmunit y
P a rt ic ip a t io n
P ro d uc t iv it y
S af e t y
P e rs o na l
P o s s e s s io ns
Int ima c y
F a mily
F rie nd s hip s
Measuring Quality of Life
Staff
# of Items
Consumers
Families
Safety
3
3
3
Emotional Well-Being
4
4
4
Autonomy
10
9
5
Community Participation
7
5
3
Productivity
3
Domains
Not Asked
0
Agreement on Quality of Life Ratings

Significant correlations between staff, family member/guardian,
and consumer QoL ratings were found at 3, 15, and 27 months
for autonomy and community participation.

Staff and family member/guardian reports for emotional wellbeing and safety were not related at 3, 15, and 27 months.

Staff and consumer reports for emotional well-being were
related for 3 and 15 months – not 27 months.

Staff and consumer reports for safety were related for 27
months – not 3 and 15 months.
Agreement on Quality of Life Ratings

Staff, family members/guardians, and
consumers have moderate to strong agreement
in the areas of autonomy and community
participation.

Staff reports appear to be more reliable proxies
for consumers than for family members/
guardians with regard to emotional well-being
and safety.
Quality of Life Associated with
Community Living
Supported by Strong Empirical Evidence
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
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Community Participation (all 3 groups)
Self-Care/Independence (staff)
Family Phone Contacts (all 3 groups)
Freedom - Low Social Controls (staff)
Psychiatric Visits (staff)
Productivity (staff)
Quality of Life Associated with
Community Living
Supported by Moderately Strong Empirical Evidence

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Autonomy (all 3 groups)
Family Visits (all 3 groups)
Personal Safety (all 3 groups)
Possession Safety (staff)
Quality of Life Associated with
Community Living
Supported by Weak Empirical Evidence

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Physical Health (staff)
Emotional Well-Being (all 3 groups)
Quality of Life Not Associated
with Community Living

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Friendships (staff)
Reduction in Inappropriate Behaviors (staff)
Material Well-Being (staff)
Implications

Staff, Family Members/Guardians, and
Consumers View QoL as a MultiDimensional Construct Which Can Be
Assessed Using the Same Measures.

Research Supports Using Staff as Proxies for
Consumers and Family Members/Guardians
When Assessing Quality of Life in Domains
of Autonomy and Community Participation.
Limitations

Generalizability
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Findings were based on proxy comparisons for
consumers who were verbal and identified as
reliable respondents.
More Work to Be Done

Study did not test reliability of proxy reports in all
QoL domains (i.e., friendships, health,
productivity, etc.)