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Family involvement in rehabilitation: A development model
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Family involvement in rehabilitation: A development model
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FAMILY INVOLVEMENT IN REHABILITATION:
A DEVELOPMENTAL MODEL
by
Sally Griffin Mathiesen
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(Social Work)
August 1997
Copyright 1997 Sally Griffin Mathiesen
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UMI Number: 9816103
C o p y r ig h t 1 9 9 7 b y
M a t h i e s e n , S a l l y G r i f f i n
All rights reserved.
UMI Microform 9816103
Copyright 1998, by UMI Company. All rights reserved.
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UMI
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u n iv e r s it y o f s o u t h e r n CALIFORNIA
THE GRADUATE SCHOOL
UNIVERSm r PARK
LOS ANGELES. CALIFORNIA 90007
This dissertation, written by
/ / k r z / A s s s A / ....................
under the direction of .... Dissertation
Committee, ami approved by all its members,
has been presented to and accepted by The
Graduate School, in partial fulfillment of re
quirements for the degree of
DOCTOR OF PHILOSOPHY
tate Studies
Date
D ISSER TA TIO N C O M M ITTE E
Chairperson
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Table of Contents
List of Tables
List of Figures
IV
V - viii
Chapter 1 - introduction
A. Aims
1 - 3
3 - 5
Chapter 2 - Review of the Literature
A. Background
1. Cycles of Mental Health Care
2. Current Status
3. Treatment in the Community
6 - 8
8 - 14
14 - 19
B. Intervention Strategies for the Individual
1. Alternative Treatment Strategies
2. Social Learning Programs
3. Social Skills Training
4. Community Care Studies
19 - 21
21 - 22
22 - 23
23 - 24
C. Intervention Strategies Involving the Family
1 .
2.
3.
4.
5.
Introduction
Family Systems Models
Vulnerability Stress Models
a. Intervention in Home
b. Stress Reduction Models
Summary of Family Interventions
Theoretical Gaps
2 4 -2 9
29 - 32
32
33
33 - 40
4 0 - 42
4 2 - 52
D. Rolland’s (1994) Family Systems/Illness Model
1. Family Systems/Illness Model (Rolland) 52 - 60
2. Individual & Family Life Cycle Theories
a. Age-Linked Stages (Levinson) 6 0 -6 4
b. Marker Event Stages of Family
(Carter & McGoldrick) 6 4 -6 6
c. Centripetal-Centrifugal Family Cycles
(Combrinck-Graham) 67 - 68
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Roiiand’s Application of Life Cycle
Theories
6 8 -7 2
Family Systems/Illness Model Adapted
for Schizophrenia
a. Typology
b. Time Phases
c. A Family Example
d. Summary
7 2 -7 4
75-81
8 1 -8 5
8 5 -8 9
89 -93
Chapter 3 - Design & Methodology
A. Aims 9 4 - 9 7
B. Design & Sample 97 -101
C. Sources of Data & Instruments 101-104
D. Operationalization of Variables 104-105
E. Analysis of Data 105-111
1. Descriptive Analysis 111 -113
2. Hypothesis Testing of Service Type &
Client Characteristics 113-115
3. Hypothesis Testing of Psychosocial Models 115 -120
Chapter 4 - Results
A. Descriptive Analysis
B. Covariate Analysis
C. Model Testing
D. Summary of Results
121-151
151-180
180-208
209-213
Chapter 5 - Discussion /Implications 214-215
A. Major Findings
B. Additional Noteworthy Findings
C. Strengths
D. Limitations
E. Future Directions
216-241
241 - 245
246 - 247
247 - 248
249 - 252
References
253 - 289
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Ill
List of Tables
Page
1. Demographic Characteristics of Sample (N-172) 99
and Attrition Rates
2. Mean Raw Scores At Each Time Point (N=172) 123
3. Summary Descriptive Statistics: Individual HLM Change 127
Parameters
4. Effect of Family Residency on Quantity & Quality of 149
Parental Involvement
5. Effect of Treatment Group on Quantity and Quality of 154
Parental Involvement
6. Effect of Gender on Quantity and Quality of Parental 163
Involvement
7. Effect of Racial Group on Quantity and Quality of Parental 167
Involvement
8. Effect of Age of Onset on Quantity & Quality of Parental 174
Involvement
IV
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List of Figures
Page
1. Family Systems/Illness Model (Rolland. 1994) Adapted 75
For Schizophrenia
2. Centripetal Force of Schizophrenia 82
3. Observed Raw Scores: Parental Contact - Entire 131
Sample (N=172)
4. Individual HLM Change Trajectories: Quantity of Parental 132
Contact - Entire Sample (N=143)
5. Mean HLM Change Trajectory: Quantity of Parental 133
Contact - Entire Sample (N=143)
6. Observed Raw Scores: Satisfaction With Family 134
Relationships - Entire Sample (N=172)
7. Individual HLM Change Trajectories: Satisfaction With 135
Family Relationships - Entire Sample (N=170)
8. Mean HLM Change Trajectory: Satisfection With Family 136
Relationships - Entire Sample (N=170)
9. Observed Raw Scores: Quality of Family Network 137
Relationships - Entire Sample (N=172)
10. Individual HLM Change Trajectories: Quality of Family 138
Network Relationships - Entire Sample (N=172)
11. Mean HLM Change Trajectory: Quality of Family 139
Network Relationships - Entire Sample (N=172)
12. Observed Raw Scores: Independence From Family 140
Entire Sample (N=172)
13. Individual HLM Change Trajectories: Independence 141
From Family - Entire Sample (N=169)
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Page
14. Mean HLM Change Trajectory: Independence From 142
Family - Entire Sample (N=169)
15. Mean HLM Change Trajectories By Family Residency: 152
Family Network Relationships - Entire Sample (N=172)
16. Mean HLM Change Trajectories By Treatment Type: Quantity 157
of Parental Contact - “ No Family Residency” Sample (N=117)
17. Individual HLM Change Trajectories of High Intensity 158
Treatment Group (N=26): Quantity of Parental Contact - “ Some
Family Residency” Sample (N=27)
18. Mean HLM Change Trajectory By Treatment Group (N=26): 159
Quantity of Parental Contact - “Some Family Residency”
Sample (N=27)
19. Mean HLM Change Trajectory By Treatment Group: Quality 161
of Family Network Relationships - “ Some Family Residency”
Sample (N=32)
20. Mean HLM change Trajectories By Gender. Satisfaction With 164
Family Relationships - “Some Family Residency” Sample (N=32)
21. Mean HLM Change Trajectories By Gender Quality of 166
Family Network Relationships - “No Family Residency”
Sample (N=140)
22. Mean HLM Change Trajectories By Racial Category: 169
Quantity of Parental Contact - “Some Family Residency^
Sample (N=26)
23. Mean HLM Change Trajectories By Racial Category: 172
Independence From Family - Entire Sample (N=172)
24. Mean HLM Change Trajectories By Age of Onset 176
Category: Quality of Family Network Relationships
Entire Sample (N=172)
25. Mean HLM Change Trajectories By Age of Onset 177
Category: Quality of Family Network Relationships
“No Family Residency” Sample (N=140)
vi
..B
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Page
26. Mean HLM Change Trajectories By Age of Onset: 179
Independence From Family - Entire Sample (N=172)
27. Mean HLM Change Trajectories By Age Group 183
Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
28. Individual HLM Change Trajectories for Ages 17-27 184
(N=28) - Quantity of Parental Contact - “No Family Residency"
Sample (N=117)
29. Mean HLM Change Trajectories for Ages 17-27 185
(N=28) - Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
30. Individual HLM Change Trajectories for Ages 28-39 187
(N=72) - Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
31. Mean HLM Change Trajectory for Ages 28-39 (N=72) 188
Quantity of Parental Contact - “No Family Residency^
Sample (N=117)
32. Individual HLM Change Trajectories for Ages 40-59 190
(N=17) - Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
33. Mean HLM Change Trajectory for Ages 40-59 (N=17) 191
Quantity of Parental Contact - “ No Family Residency”
Sample (N=117)
34. Mean Change Trajectory for Ages 17-27; Ages 28-39; 193
Ages 40-59: Quantity of Parental Contact - “ No Family
Residency" Sample (N=117)
35. Mean HLM Change Trajectories By Phase of Illness 194
Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
36. Individual HLM Change Trajectories for Early Phase of 196
Illness (N=24) - Quantity of Parental Contact - “No Family
Residency” Sample (N=117)
vii
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Page
37. Mean HLM Change Trajectory for Early Phase of Illness 197
(N=24) - Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
38. Individual HLM Change Trajectories for Mid Phase of 199
Illness (N=64) - Quantity of Parental Contact - “No Family
Residency” Sample (N=117)
39. Mean HLM Change Trajectory for Mid Phase of Illness 200
(N=64) - Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
40. Individual HLM Change Trajectories for Late Phase of 201
Illness (N=29) - Quantity of Parental Contact - “ No Family
Residency” Sample (N=117)
41. Mean HLM Change Trajectory for Late Phase of Illness 202
(N=29) - Quantity of Parental Contact - “No Family Residency"
Sample (N=117)
42. Mean HLM Change Trajectories by Age and Phase: 204
Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
43. Mean Change Trajectories in Early; Mid; Late Phase 207
Quantity of Parental Contact - “No Family Residency”
Sample (N=117)
44. Mean Change Trajectories for Ages 17-27; Ages 28-39; 208
Ages 40-59 [Quantity of Parental Contact - “No Family
Residency” Sample (N=117)
VIII
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J
I. INTRODUCTION
The family has assumed an increasingly important role in the
conceptualization of the course and treatment of schizophrenia.
Psychosocial treatments that intervene at the environmental level to
reduce stress, such as family interventions, have been shown to have
a positive effect on the subsequent course of schizophrenic illness.
Given the importance of the family in terms of their effect on the
course of illness, the burden suffered, and their lack of satisfaction
with existing treatment by professionals, it is critical to systematically
investigate family involvement patterns and ultimately use the
information to target treatment more effectively. The Clinical
Research Services Panel of NIMH (1992) has recommended that the
varying kinds and degrees of family involvement "should become
an important variable in rehabilitation effectiveness research"
(Attkisson, 1992, p. 601).
But several critical issues have impeded progress toward full
understanding of family involvement in the course and treatment of
schizophrenia: 1 - Family interventions have been conducted almost
exclusively with individuals who were hospitalized or reside with their
family. As a consequence, there are few cross-sectional data and
virtually no longitudinal data to characterize family interaction patterns
for persons living in the community; 2- There are no existing
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comprehensive models to predict how family interaction patterns may
change over the course of the illness; 3- Client characteristics, such as
gender, ethnicity, and age, have been shown to be related to course of
illness, but little is understood of their relationship to family
involvement; 4- Research efforts must be directed toward
understanding the relationship between intensive community-based
rehabilitative treatment and family involvement.
In addition, the NIMH clinical services research panel on the
severely and persistently mentally ill has recommended the use of
analytic techniques that take into consideration the difficulties inherent
in repeated measures of changing variables (Attkisson, 1992), The
time, effort, and cost required to collect longitudinal data has not been
matched by adequate statistical methods in many studies (Gibbons, et
al., 1993).
This study will investigate longitudinal patterns of parental
contact for a sample of persons diagnosed with schizophrenia and
participating in community-based rehabilitative treatment. The study
will determine if systematic differences in patterns based on family
residency, treatment type, gender, racial category, or age of onset are
present. In addition, a developmental model based on individual,
family, and illness processes will be presented which has been adapted
to the characteristics of schizophrenia. The model will be tested to
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determine if age, phase of illness, or the interaction of age and phase
are significantly related to temporal patterns in parental contact. The
data will be analyzed with a technique which preserves individual
differences, yet permits the analysis of group differences over time.
A. SPECIFIC AIMS
The specific aims of this research project were:
Aim 1(a): To describe prospective change in the quantity and
quality of parental involvement over a three-year period in an urban,
ethnically diverse sample of community-based individuals diagnosed
with schizophrenia.
Question 1(a): How does the quantity and quality of parental
involvement change over time?
Aim 1 (b): To explore possible systematic differences in
temporal patterns of parental involvement based on family residency.
Question Kb): Is the family residency of the subject associated
with differences in the quantity and quality of parental involvement
over time?
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Aim 2: To explore possible systematic differences in temporal
patterns of parental involvement based on: (a) participation in
intensive, community-based rehabilitative treatment; (b) gender;
(c) racial category; or (d) age of onset.
Question 2 (a): Are there differences in the quantity and quality
of parental involvement over time based on participation in intensive
vs. non-intensive rehabilitative treatment?
Question 2 (b): Are there differences in the quantity and quality
of parental involvement over time based on gender?
Question 2 (c): Are there differences in the quantity and quality
of parental involvement over time based on racial category?
Question 2 (d): Are there differences in the quantity and quality
of parental involvement over time based on age of onset?
Aim 3: To test hypotheses based on psychosocial
developmental models of individual, family, and illness processes.
Hypotheses to be tested will help to determine if age, phase of illness,
or the interaction of age and phase of illness are predictive of levels of
parental contact over time.
Question 3 (a): Based on Levinson's normative age categories,
is age significant in predicting levels of parental contact in community-
based individuals diagnosed with schizophrenia?
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r -azz
jestion 3 (b): Based on Rollar
ph i llness significant in predlctir
c ly-based individuals diagnos
1 jestion 3 (c): Based on the
; there a phase of illness X
: on predictive of parental cc '•— f- r -r-
: als diagnosed with schizopl^ - ^
A
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&
I
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r
pêT ^i.-
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a
^f^he copyright owner. Further
reproduction prohibited without
permission.
Question 3 (b): Based on Holland's model of chronic illness, is
phase of illness significant in predicting levels of parental contact for
community-based individuals diagnosed with schizophrenia?
Question 3 (c): Based on the current adaptation of Holland's
model, is there a phase of illness X age-linked developmental stage
interaction predictive of parental contact for community-based
individuals diagnosed with schizophrenia?
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f
•À
II. REVIEW OF THE LITERATURE
A. BACKGROUND
Before reviewing the literature pertaining to family involvement
in the treatment of schizophrenia, additional background information
may be helpful to place the integral role of the family in perspective.
Community treatment of people with chronic mental illness will be
traced in terms of (1) the cycles of mental health care in the U.S.,
(2) the current status of those with chronic mental illness (in terms of
definition, prevalence, and etiological models), and (3) the philosophy
of community care. Finally, (4) a summary of interventions that have
addressed the individual, both in the hospital and in the community, is
presented.
1. Cvcles of Mental Health Care
There have been three major cycles of mental health care in this
century in the United States: the state hospital era, the era of
community mental health centers, and the current status of mental
health care, characterized by a continued policy of
deinstitutionalization, lack of adequate community support and fiscal
cutbacks (Talbott, 1990).
(a) State Hospital Era: The first cycle, from
approximately 1900-1950, was dominated by an emphasis on
inpatient care in state and county mental hospitals. The state hospital
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treated patients from the time of diagnosis onward, during both acute
episodes of psychosis and during long-term chronic illness. The
lengthy time dimension "provided an institutional envelope sufficient to
cover both the spikes of psychotic episodes and the lower levels of
illness during partial or complete remissions" (Pepper, 1987, p. 456).
(b) Community Mental Health Era: The first era ended
with the passage of the Community Mental Health Centers Act in
1963. The CMHC Act signaled the first federal involvement in mental
health (Kiesler, 1992), with its emphasis on outpatient care and its
goal of deinstitutionalization. A nationwide system of mental health
centers that would provide the chronically mentally ill with necessary
services in the community was envisioned, allowing for the "least
restrictive environment" for the patients (Kiesler, 1992).
(c ) Deinstitutionalization Era: The CMHC era was
essentially ended by the elimination of the federal CMHC system in
1981. The Reagan Administration transformed the bulk of federal
monies for mental health, health, and other social programs into
greatly reduced block grants issued to the states. Medicaid, housing
subsidies, and social services were severely cut back, and large
numbers of chronically mentally ill persons were removed from the
rolls of disability insurance by the Social Security Administration.
"The more difficult access to housing and income benefits is believed
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J
to have contributed to the enlarged population of homeless mentally ill
found in every major American city", where living conditions
exacerbated the effects of their illness (Mechanic, 1989, p.95).
2. Current Status:
Due in part to the increased visibility of the homeless, the
problem of the lack of adequate treatment for the chronically mentally
ill (CMI) has come to the public's attention. The changing
demographics indicate that the baby boom" cohort is at an age for a
relatively high incidence of mental disorder, and is not getting the
necessary treatment (Talbott, 1988). The population over age sixty-
five in the U.S. will double by 2030, and mental illness will increase
dramatically within this age group.
In addition, the huge numbers of " young chronics", the visible
evidence of the baby boom population, are of great concern due to
their tendency to be substance abusers, non-compliant with
treatment, and without permanent homes (Talbott, 1988). "It is hard
to think of a group of have-nots in America that has less public
sympathy, less lobbying clout, and a lower priority for funding than the
chronically mentally ill" (Talbott, 1988, p.50). Negative attitudes by
both community leaders and caregivers toward treatment of the
population, combined with economic restrictions that force
competition between systems for the same patients and resources.
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and the diffusion of responsibility that resulted from multiple settings
rather than the single, state hospital setting, have led to a inefficient
and disjointed mental health services (Talbott, 1988).
The growing literature on community mental health since the
major policy thrust of the mid-1960s, and during the last decade of
fiscal constraints, is evidence of the level of concern and struggle that
policy-makers and clinicians have devoted to finding the right
combination of elements that will ensure decent, humane, and
meaningful treatment of chronic mental illness in the community
(Anthony & Blanch, 1989).
(a) Definition of Population: A review of the literature
found that seventeen definitions of chronic mental illness have been
used in the past decade (Schinner, Rothbard, Kanter, & Jung, 1990).
Early definitions that focused on inpatient populations have evolved to
those that encompass psychiatric diagnosis, functional disability, and
illness duration.
In 1987, the National Institute of Mental Health convened a task
force to develop a consensus definition of the seriously mentally ill for
use by clinicians, researchers, and policy analysts. The areas of
consensus were on diagnosis and disability, while the departures
centered upon the duration of the disability. Chronicity in mental
illness has also been suggested to be an artifact of culture, and that
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the cultures which minimize social stigma and self-devaluation are
associated with better prognosis for the mentally ill population (Lefley,
1990).
A useful definition that begins to capture the range of deficits
is as follows; "Those persons who suffer mental or emotional
disorders (organic brain syndrome, schizophrenia, recurrent depressive
and manic-depressive disorders, paranoid and other psychoses, plus
other disorders that may become chronic) that erode or prevent the
development of their functional capacities in relation to three or more
primary aspects of daily life - personal hygiene and self-care, self-
direction, interpersonal relationships, social transactions, learning, and
recreation - and that erode or prevent the development of their
economic self-sufficiency" (Goldman, Gattozzi, & Taube, 1981, p.23).
One of the difficulties in the literature on the chronically
mentally ill is that while studies often address the fact that the
population includes several categories of disorders, schizophrenia
comprises the great majority of those suffering from severe and
persistent mental illness. The sample populations are predominantly
schizophrenic or schizoaffective, and if a diagnostic breakdown is
provided it is reported in terms of the proportion of schizophrenic
patients included, with the remainder of the diagnoses grouped as
1 0
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"other". It appears that schizophrenia has become the rule, rather
than the exception.
While it is recognized that not all people with chronic mental
illness suffer from schizophrenia, for the purposes of clarity and
parsimony, in this review schizophrenia will be considered the primary
diagnosis when reference is made to the CMI. Any instance where the
literature indicates differential effects or results for other diagnoses
will be indicated.
(b) Prevalence of CMI: Chronic mental illness is found in
all ages, races, and socioeconomic strata. Most data concerning the
magnitude and distribution of mental illness is gathered on the basis of
admission records from hospitals and other treatment facilities, and
does not address the large number of untreated individuals. As
reported by NIMH,, very conservative estimates are that at one time or
another in their lives, 15 million Americans have suffered from mental
illness, and that from 1.7 to 4 million are now seriously mentally ill.
More than 900,000 reside in institutional settings, and the remainder
live in the community, many of them homeless or at high risk for
homelessness (National institute of Mental Health, 1991). Earlier
estimates broke down the distribution further: 800,000 of CMI
resided with their families, 200,000 lived by themselves, 300,000
lived in nursing homes, 300,000 were in foster homes, group homes,
11
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J
or other supervised settings, 200,000 were in hospitals, 26,000 in
jails or prisons, and approximately 150,000 lived in public shelters or
on the street (Torrey & Wolfe, 1986).
The most important finding of a comprehensive study of
epidemiological estimates of mental illness in the United States using
1980 census data was that up to 45% of all those with severe
psychotic disorders, and nearly 20% of those with schizophrenia, had
never received treatment from a mental health professional
(Dohrenwend, et al., 1980).
(c ) Etioloav: There appears to be consensus in the
literature that there is a biological basis for the etiology of
schizophrenia, which comprises the large majority of the CMI. "Four
facts have been established about the causes of schizophrenia: It is a
brain disease, the limbic system and its connections are affected, it
often runs in families, and the brain damage may occur very early in
life" (Torrey, 1988, p. 129).
A significant area of research and practice is the social-stress
theory, which hypothesizes that an accumulation of stressful events
and situations can overwhelm one's coping abilities and personal
resources (Mechanic, 1989). As applied to the CMI, the "diathesis-
stress" model stated that a genetic predisposition (or diathesis)
1 2
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combined with developmental stressors resulted in schizophrenia
(Rosenthal, 1963; Gottesman & Shields, 1982).
A recent review of the literature (Yank et al., 1993) described
vulnerability-stress models of schizophrenia as incorporating a variety
of etiological components (biological, developmental, learning, genetic,
and environmental) which interact to produce a degree of vulnerability
(Zubin & Spring, 1977; Goldstein, 1990; Neuchterlein, 1987;
Neuchterlein & Dawson, 1984). The level of vulnerability is affected
by the level of stress to "create a threshold for symptomatic illness"
(Yank et al., 1993, p. 56).
A systems perspective is evident in recent conceptualizations,
which have considered the mediating factors in schizophrenia
(Anthony & Liberman, 1986; Brenner, 1989; Ciompi, 1 988; 1 989;
Nicholson & Neuf eld, 1992; Strauss, 1989). These models emphasize
"interactions over time, feedback processes, biological functioning,
stressful events, cognitive processes, coping skills, competence, and
symptomatology" (Yank et al., 1993, p.56). The vulnerability
represents the risk of relapse or acute episode. Environmental stress
impacts a vulnerable person, which results in a schizophrenic episode
(Straube & Oades, 1992).
Most psychosocial treatments for the severely mentally ill are
based on the vulnerability-stress theory, with the goal of reducing
13
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stress for the vulnerable individual. This model of schizophrenia
"highlights the ability of the person to exercise behavioral
competencies that can have an effect on his social environment and
on his brain function" (Liberman, et al., 1987, p. 97).
3. Philosoohv of Treatment in the Communitv
One of the primary goals of the Community Mental Health
movement was to develop comprehensive, effective treatment
programs that would reintegrate chronic patients into the community
and result in improvements in the quality of life of the severely and
persistently mentally ill. Reliance on long-term hospitalization in state
institutions was replaced by shorter stays, and transfers to nursing
homes and community-based care (Bellack & Mueser, 1986; Talbott,
1988). It has been suggested that a more accurate term than
"deinstitutionalization" would be "transinstitutionalization" (Talbott,
1988, p. 45).
The reduction in the number of beds in state hospitals was
matched by the increase in the number of psychiatric beds in the
general medical sector, community mental health centers, and
Veteran's Hospitals (Goldman, Adams, & Taube, 1983), while
réadmissions to hospitals accounted for 70% of all admissions
(Sharfstein, 1984). Hospital admission and retention policies proved
an easier remedy than overcoming the obstacles of providing a
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comprehensive system of community services that would ensure
adequate benefits for released patients. Fewer than 700 of the 2,500
planned federally supported CMHCs were established, serving only half
the nation (Mechanic, 1989). The goal of providing care in the least
restrictive environment was translated into a population of vulnerable
individuals dependent on the social service system for food and
shelter, living marginal lives and often ostracized from their
community. "While state hospitalization in earlier times created the
institutionalization syndrome, deinstitutionalization has created a new
syndrome, the After Care Client who is characterized by revolving door
rehospitalization, poor physical health, social isolation, lack of daily
living skills, chronic unemployment, and poverty" (Bellack & Mueser,
1986, p. 177).
Bellack and Mueser (1986) identified three major factors that
contributed to the situation resulting from deinstitutionalization. The
first factor was unrealistic expectations about the ability of
antipsychotic medications to control symptoms, which led to
disappointment for patients and their families, and inadequate
treatments. Early researchers discovered that many patients did not
respond to neuroleptics, and of those who did respond, up to 50%
relapsed within two years (Hogarty, Schooler, Ulrich et al, 1979).
Side effects were often so debilitating as to rival the effect of the
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I
psychotic symptoms (VanPutten & May, 1978). in regard to
schizophrenia in particular, neuroleptics affected the "positive"
symptoms of the illness, not the deficit symptoms which proved to be
more troubling to families than the hallucinations and bizarre behaviors
(Carpenter, Heinrichs, & Alphs, 1985).
The second major factor was unrealistic expectations about the
ability of the CMH system to provide a comprehensive system of care
in the face of inadequate funding provisions. In spite of failures and
abuses, many of the services that the state hospital provided, such as
housing, income support and medical care, were lacking in the
community mental health centers (Bellack & Mueser, 1986). In
addition, the limited resources that were available were utilized more
by less-impaired individuals than by the severely and persistently
mentally ill.
Finally, adherence to an infectious disease model of the illness
in which treatment was considered a short-term process for acute
episodes led to unrealistic expectations of outcomes. Schizophrenia is
best viewed as a chronic illness model, similar to the course of illness
encountered by those with renal disease or diabetes. "The goals
include managing of symptoms, teaching living and coping skills, and
enhancing patients' quality of life, rather than 'curing' the illness"
(Bellack & Mueser, 1986, p.178).
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The cycles of mental health care have been instructive as to the
need for comprehensive and long-term treatment for the CM I.
"Psychosocial interventions can play a critical role in a comprehensive
intervention program and are probably necessary components if
treatment is to improve the patient's overall level of functioning,
quality of life, and compliance with prescribed treatments" (Bellack &
Mueser, 1993, p. 318).
(a) Communitv Support Svstem (CSS): The wide range of basic
community services and supports for those with long-term mental
illness has become known as a Community Support System (CSS). It
was developed by the National Institute of Mental Health in 1976 by a
combination of clinicians, researchers, family groups, mental health
officials, citizen and consumer advocacy groups and others from the
entire United States (NIMH, 1982).
The CSS concept has identified an optimal combination of
treatment, life support, and rehabilitation services that would assist
severely and persistently mentally ill persons to function at optimal
levels within the community, comprised of the following essential
elements: 1-Client identification and outreach; 2-Mental health
treatment; 3-Crisis response services; 4-Health and dental care;
5-Housing; 6-Income support and entitlements; 7-Peer support;
8-Family and community support; 9-Rehabilitation services;
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10-Protection and advocacy; and 11-Case management (Stroul, 1989,
p.5). Each community is to arrange provision of the array of services
in a manner consistent with the philosophy that CSS represents.
The concept was not meant to be only a laundry list of essential
services and supports, but services delivered according to a common
set of values, and organized into an integrated system that reflects the
individual needs of a community. "The CSS ideology embraces the
notion that services should maintain the dignity and respect the
individual needs of each person (Stroul, 1989, p.11). In addition, an
emphasis on creation of opportunities for the development of each
person's potential, and the belief that the community is the ideal place
for the provision of long-term care are inherent aspects of CSS.
Stroul (1 989) listed the CSS guiding principles as follows:
Services should: 1- be consumer-centered; 2- empower clients;
3- be racially and culturally appropriate; 4- be flexible; 5- focus on
strengths; 6- be normalized and incorporate natural supports;
7- meet special needs; 8- be accountable; 9- be coordinated, (p.12)
(b) Communitv Support Programs (CSPsl: While a CSS
is the conceptual framework for comprehensive care and assumes
responsibility for the provision of all components for a target
population, community support programs or CSPs (NIMH, 1982) are
service programs that meet a cluster of CSS functions; i.e., "the
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specific service elements developed to carry out CSS functions" (Test,
1984, p. 350).
In recognition of the continued policy and commitment to
community care of the chronically mentally ill, the most beneficial
method of organization seemed to be to view the CSS concept and
framework as the umbrella under which treatment occurred. First, a
review of treatments that focused primarily on the individual, whether
as an inpatient or in the community, is presented. The literature
reviewed was not limited to studies of programs which were
specifically identified as "CSP", but were included if they evaluated
programs or collected data relevant to CSS components and if they
fulfilled a cluster of CSS functions. The family intervention literature
will then be reviewed.
B. INTERVENTION STRATEGIES FOR THE INDIVIDUAL
There has been a wide variety of intervention approaches used
with individuals, from alternatives to hospitalization which established
the viability of community care, to programs such as social learning,
social skills training, and model community programs.
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1. Summary of Alternative Treatment Studies:
The deinstitutionalization movement prompted a number of
studies designed to determine the viability and effectiveness of
maintaining severely mentally ill persons in the community.
Residential alternatives to needed hospitalization : The small
number of controlled studies conducted found that if patients were
appropriate for the program (non-assaultive, non-suicidal}, many
patients could be managed in community settings rather than as
inpatients (Rutman, 1971), with reductions in rehospitalization
(Velasquez & McCubbin, 1980), improved levels of patient satisfaction
(Polak, 1978) and psychosocial functioning (Mosher, et al., 1975;
Lamb & Goertzel, 1972). Brook (1973) found no differences between
those diverted temporarily to a community hostel and inpatients, while
a program which demonstrated increased employment in the
residential group also resulted in significant cost-benefit savings
(Fairweather, Sanders, Cressler, & Maynard, 1969). Residential
alternatives to remaining in the hospital demonstrated the feasibility of
early discharge to effective, ongoing community programs with no
increase in symptomatology (Marx, Test & Stein, 1973), and some
evidence of improved social functioning (Linn, et al., 1977) depending
upon the level of expectation in the program (Weinman & Kleiner,
1978). Lower expectations resulted in less stress and recidivism,
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1
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while higher expectations created higher stress but better functioning
(Weinman & Kleiner, 1978). Day treatment was found to be an
effective substitute for appropriate candidates to inpatient or
outpatient care, with comparable symptom levels and the possibility of
superior performance in social and vocational measures (Herz et al,
1971; Michaux et al., 1972; Meitzoff & Blumenthall, 1966), or relapse
rates (Wilder et al., 1966). Length of Hospitalization: Groups
assigned to reduced hospital stays resulted in equivalent or superior
symptomatology levels and rehospitalization rates when compared to
standard hospitalization (Caffey et al., 1968; Glick & Hargreaves,
1977; Hirsch et al., 1979; Schwarz & Vallance, 1987). Hargreaves et
al. (1 989) cite four reviews of length of stay studies which concluded
that outcomes were equivalent or slightly superior after short stays of
30 days or less (Test & Stein, 1978; Braun et al., 1981 ; Straw, 1 982;
Mattes, 1982), but later reviews advocated for more extended
hospitalization for those patients that remain assaultive or destructive,
and for diagnostic purposes (Magaro et al., 1984; Talbott & Glick,
1986).
2. Summary of Social Learning Programs:
Rigorous empirical evidence (Paul & Lentz, 1977) has shown
that social learning programs, conducted primarily in inpatient settings,
are superior in effectiveness to traditional inpatient and milieu
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programs, even for severely impaired patients (Magaro et a!., 1984;
Wallace & Liberman, 1985), and lead to acquisition and improvement
of interpersonal, communication, and self-care skills. The specific
mechanisms responsible for the program's effectiveness have not been
identified (Liberman et al., 1977; Turner & Luber, 1980), and the
generalizeability of skills to the natural environment remains
unanswered (Woods, Higson & Tannahil, 1984).
3. Summary of Social Skills Training:
Social Skills Training has been widely used and empirically
demonstrated to be effective and relatively long-lasting in maximizing
behavioral improvement for inpatient populations, including
schizophrenic patients (Monti, 1979; 1980; Brady, 1984; Wallace,
1982). In the most recent review of the literature, Bellack and
Mueser (1993) report that six larger comparison studies have
replicated these findings, and indicate that the training effects are
maintained at 6 and 12-month follow-ups (Brown & Munford, 1983;
Spencer et al., 1983; Bellack et al., 1984; Liberman et al., 1985;
Hogarty et al., 1986, 1991; Eckman et al., 1992). A meta-analysis
of social skills training studies with schizophrenia found that if
behavioral measures were used, SST led to significant improvements
in social behaviors, while global measures and self-reported
symptomatology showed only marginal improvement (Benton et al.,
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1990). Additional follow-up research is needed to determine if social
skills continue to be maintained by reinforcement in the natural
environment (Payne & Halford, 1990; Halford & Hayes, 1991), and
which skills should be targeted (Bellack et al., 1989; Hogarty, 1986;
Liberman et al., 1985).
4. Summary of Communitv Care Studies:
Overall results of a group of early community studies supported
the hypothesis that even low intensity aftercare planning is better than
none (Sheldon, 1964; Caffey et al., 1971; Claghorn & Kenross-Wright,
1971; Hogarty et al, 1973; Hogarty et al., 1979) and some programs
showed increased levels of psychosocial functioning (Linn et al.,
1979). Consistent with the CSS philosophy, the manner and tone of
the service delivery is an important component in successful outcomes
(Segal & Baumohl, 1980).
Programs of Assertive Community Treatment (PACT), as
alternatives to the mental hospital, have demonstrated superior
outcomes to hospital-based treatment at comparable costs (Attkisson,
1992). Stein and Test (1980) assigned an unselected sample of 130
patients to inpatient care or an intensive community program. Training
in Community Living (TCL), and hospitalization was avoided for all but
18% of the sample as long as the treatment continued (Test, 1980).
The TCL group had more employed days and greater satisfaction with
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life, was more medication compliant and less symptomatic than the
control group. Outcome gains appear to require continuous services
(Attkisson, 1992).
An ongoing 12-year study compared a control group receiving
services in an extremely good system of care in Dane County,
Wisconsin, with those receiving services organized in accordance with
the TCL model of care. The TCL model resulted in reduced
hospitalization, lengthened community tenure, and improved
independent living for a sample of young, chronic schizophrenic adults,
with effects sustained for up to two years (Test et al., 1991). A
review of experimental studies based on the TCL model using various
settings and populations found that the most consistent finding was a
reduction of hospital utilization (Olfson, 1990), although comparisons
are difficult due to the varying degrees of fidelity to the original TCL
program (Test, 1992).
C. INTERVENTION STRATEGIES INVOLVING THE FAMILY
1. Introduction:
The increased research in recent years on interventions with
families of persons with schizophrenia may be traced to several key
factors.
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Early conceptions of the role of the family as an environmental
factor in the course of illness were based on the pathology model
(From-Reichman, 1950; Lidz, 1949). The "schizophrenogenic mother"
was implicated as a major force in "driving family members into the
fearsome world of schizophrenia" (Falloon, 1984, p. 4). The
emotional child-abuse paradigm of schizophrenia engendered strong
reactions in both mental health practitioners and families, and led to a
tremendous surge in research which attempted to isolate the particular
family behaviors that could affect the course of illness.
Family systems interventions were developed that viewed the
family as the unit of pathology, with the ill member seen as the carrier
of the disorder. Change in one member of the family was seen to
affect all others, and the focus of intervention was to understand and
alter deviant communication patterns (Weakland et al., 1974; Haley,
1959; Madanes, 1983; Selvini-Palazzoli et al., 1978; Minuchin, 1974).
The implicit blaming of the family for the existence of the illness
created a painful rift between families and mental health professionals
that has been difficult to overcome.
The increased use of neuroleptic medications after their
introduction in the 1950s led to the ability of many individuals to
sustain community tenure. But studies revealed that 30% to 50% of
those compliant with medication still relapse in the initial year after
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discharge (Falloon, Watt, & Shepherd, 1978; Hogarty et al., 1979),
implicating environmental factors.
As medication maintenance became the foundation of treatment
for the majority of those with schizophrenia, and the biological basis
for schizophrenia became more accepted, the enthusiasm for the
family systems therapies diminished. But a small group of researchers
acknowledge the necessity of medication maintenance, and continue
to view family systems therapy as part of a comprehensive treatment
approach (Selvini-Palazzoli et al, 1978;! 980).
The development of vulnerability-stress models of schizophrenia
merged the biological and environmental factors to account for the
cycles of relapse present in the course of illness (Zubin & Spring,
1977; Zubin, 1987; Neuchterlein & Dawson, 1984). Studies of the
family environment sought to identify factors that could "protect a
vulnerable person from the stress-related, bio-medical determinants of
schizophrenic relapse" (Liberman, 1986).
Clinicians and researchers have long held that the emotional
climate of family interaction has an effect on the course of illness in
schizophrenia. Researchers in the 1970s found that patients who
returned from a period of hospitalization to live with families which
showed high levels of expressed emotion (EE) were more likely to
experience a relapse of symptoms at 9 months and at a 2 year follow-
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up than patients returning to low EE homes (Brown, Birley & Wing,
1972; Vaughn & Leff, 1976; Left, et al., 1982; Vaughn et al., 1984).
Partially as a result of these research findings, the family has become
an important resource in psychosocial rehabilitation.
The rise of consumer interest groups in mental health resulted in
increased involvement of family members in treatment and the
formation of support groups and political advocacy groups to
influence policymakers (Katschnig & Konieczna, 1989; Chamberlin,
Rogers, & Sneed, 1989; Boker, 1987). "Both the patient and the
family were traditionally left out of the discussion of diagnosis,
symptoms and prognosis of schizophrenia " (Falloon et al., 1984,
p.91 ), and the rationale for treatment and the need for continued
medication compliance was not presented to the family (Soskis,
1978). The lack of fundamental information regarding the course of
treatment was felt to be a central factor in the high rates of non-
compliance with chemotherapy in community care (VanPutten, 1978).
Finally, the policy of deinstitutionalization in the United States
and the acceleration of community care in other countries "provided
the political climate and necessity for the development and acceptance
of family interventions" (Terrier & Barrowclough, 1990, p. 409). The
Presidential Commission on Mental Health (1978) announced in its
report that families, who often act as primary caretakers of
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schizophrenics and assume much of the economic and emotional
burden of care, need to be considered as community support is
planned for patients. In a review of the literature on "burden of care",
Fadden et al. (1987) surmised that research has confirmed that
improving the manner in which relatives cope with the burdens of
caring for a schizophrenic family member has a beneficial effect on the
course of the illness .
The family is now seen as in need of support, and also as a
factor that may affect the course, not the cause, of the illness (Simon
et al., 1991 ). Educating the family about schizophrenia is a first step
toward providing support, along with respite care (day hospitalization
and residential care) for the most impaired patients, and income
support, housing, and support services for patients and families. Many
families are able and willing to provide continued support (Hatfield &
Lefley, 1987), but often the families cope with the recurrent
exacerbations of schizophrenia in emotional and ineffective ways that
produce high levels of tension within the family unit. For such
families, more than social support is needed, and methods of family
intervention have arisen to meet the need.
Two frameworks for family intervention strategies will be
reviewed. The Family Systems Model includes various forms of
psychotherapy that view schizophrenia not as a psychopathological
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condition in an individual {Fromm-Reichman, 1950; Lidz, 1949), but an
illness resulting from distorted interpersonal conflicts in the family.
The therapies in the model focus on changing the communication
patterns within the family.
The concept of a combined biological and environmental
vulnerability which renders individuals exquisitely sensitive to stress,
and ultimately results in a schizophrenic episode is contained within
several models of the illness. These models have evolved from the
early stress-diathesis or vulnerability model (Zubin & Spring, 1977), to
more complex models which recognize multiple interacting systems of
environmental factors (protectors as well as stressors) and personal
vulnerability factors (Neuchterlein, Dawson et al., 1992). For the
purposes of this review, any studies which view schizophrenia from
this combined biological and environmental vulnerability framework
will be referred to as emerging from a "vulnerability stress" model.
Since the late 1970's, "virtually all empirical studies of family
intervention and schizophrenia have grown out of the
stress/vulnerability model" (Gurman, et al., 1986, p.576).
2. Familv Svstems Models:
Jackson, Bateson, Haley and Weakland (1971) identified a
communication characteristic that they called the "double bind",
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which consisted of contradictory messages that exist at the verbal and
the non-verbal level. Other groups, such as Lidz at Yale (1973) and
Bowen at NIMH and Georgetown (1966), were observing similar
benefits from family discussions.
Three related models of therapy that arose from the work of
Bateson and his colleagues are often grouped together as strategic
therapies (MacKinnon, 1983), and include the brief therapy model
associated with the Mental Research Institute (MRI) (Weakland, Fisch,
Watzlawick et al., 1974), the approaches developed by Haley (1959)
and Madanes (1983), and the research of the Milan, Italy associates
(1978). The three strategic approaches are followed by the structural
approach of Minuchin (1974).
(a) The MRI or Brief Theraov Approach (Weakland et al.,
1974) is based on the theory that behavior occurs as part of a series
of ongoing interactional events that can only be understood in context.
Symptoms are viewed as family-created reality, which the therapist
acts to interrupt by altering maladaptive sequences of communication.
Outcome effectiveness is judged by family self-report as to the degree
of problem resolution.
(b) The Halev/Madanes approach (Halev. 1959;
Madanes, 1983) views symptoms as metaphors arising from
dysfunctional hierarchies within the family system. Therapy
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reorganizes the family structure so that the parents are in a superior
position to help the rest of the family. The outcome of the approach
"has no research data to support it" (Madanes, 1983, p.223).
(c I The Milan approach of Selvini-Palazzoli (Selvini-
Palazzoli et al., 1978) has identified a "schizophrenic transaction" or
reciprocal self-disqualification. The theory contends that the patient
remains insane to prevent a catastrophic family conflict (Selvini-
Palazzoli et al., 1980). The therapist uses techniques such as circular
questioning and paradoxical prescription to break the homeostatic
stalemate within the family system. Family self-report regarding the
state of the problem is the only evaluation used (Falloon, 1984).
(d) The Structural Approach (Minuchin. 1974: Colapinto.
1991) also views the family system in context, but focuses on the use
of spatial and organizational metaphors in describing problems and
identifying solutions. The family hierarchies and boundaries are the
targets of change (Colapinto, 1991). Treatment effectiveness is
viewed by the therapist as elimination of the problem.
The lack of attention to empirical outcome studies in both the
strategic and structural approaches may be traced to the biological
elements of schizophrenia and the labeling of the patient as having a
physical illness, which was so at odds with the philosophical stance of
the early theorists. By not acknowledging the benefits of drug therapy
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as a part of a complete treatment of schizophrenia, the family systems
therapy approach was stalled, and not subjected to a rigorous test of
efficacy (Falloon, 1984). A limited number of family therapists (Selvini-
Palazzoli and colleagues) has recognized the essential component of
medication maintenance in a comprehensive treatment plan to a
greater degree than other theorists, but they have not sought
validation of their concepts in controlled studies.
3. Familv Treatment Using Vulnerability Stress Models
The concentration on stressful family communication patterns in
the family systems models may have contributed to the focus on
family education to reduce stressful relationships in vulnerability
stress models. Family treatment based on vulnerability stress models,
in its ability to empirically examine treatment efficacy in controlled
studies and the explicit nonblaming stance toward the family, is an
important improvement over the family systems models.
The finding that high levels of criticism directed toward the
patient increased the environmental stress and were predictive of
relapse led to the development of family therapies which would
minimize negative expressions and attitudes toward the patient (Brown
et al., 1972; Leff, 1976). The focus on relapse is evident in its nearly
exclusive use as an outcome measure in the following models.
3 2
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(a) Intervention in the Home: The four "Family Plus
Intervention" studies presented were the first in this review to define
the family as instrumental in fulfilling a cluster of CSS functions,
supplemented by a team of mental health workers that provided
minimal treatment in the home. In all four studies, subjects were
randomly assigned to hospitalization or the home treatment, and
results showed that at least 77% of those in the home treatment
condition could avoid hospitalization as long as the home treatment
was in effect (Test, 1984).
The results indicated that a great many patients could be
maintained at home with medication (Pasamanick et al., 1967), with
comparable (Langlsey & Kaplan, 1968) or improved social functioning
as compared to Inpatient groups (Rittenhouse, 1970), at a lower cost
and with reduced family burden (Fenton et al., 1979).
(b) Stress Reduction Models: The stress reduction
models of treatment which involve the family have their roots in
research on Expressed Emotion (EE), and so a brief summary of the EE
research is presented, followed by a summary of the stress reduction
models of family treatment.
The concept of Expressed Emotion was developed in the early
1970's as researchers found that patients recovering from an acute
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episode were more vulnerable to relapse if they returned to households
in which family members were openly critical of the patient, and/or if
they spent extended time (more than 35 hours per week) in direct
contact with the critical relative (Brown, Birley, & Wing, 1972;
Brown, 1985; Vaughn & Leff, 1976).
The EE concept led to the development and refinement of
interventions designed to lower the amount of fact-to-face contact
(Brown et al., 1972), lower the stress in the household (level of EE)
from high to low (Leff, 1976), and to educate both the individual and
family about the illness and (Leff, 1976; Goldstein, 1978; Berkowitz et
al., 1981; Leff et al., 1982; Anderson et al., 1980, 1986; Falloon et
al., 1985; Tarrier et al., 1988),
Education about the illness has been provided to both the
patient on hospital wards (Patterson, 1980; Goldman & Quinn, 1988)
and to the family in order to improve aftercare compliance with
medications and (Powell, Othmer & Sinkhorn, 1977). Goldman, et al.
(1988) found that even severely impaired individuals were able to
learn and retain information that pertained to their illness, reporting a
correlation between education and the reduction of negative
symptoms. But if used as the sole intervention, education of relatives
had no effect on relapse in high-EE patients (Tarrier, et al., 1988).
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In an extensive review of family interventions, Bellack & Mueser
(1993) found the most severe limitation was the conceptualization of
EE as unidirectional: the family's effect upon the patient (Bellack &
Mueser, 1993). Little consideration was given to the possible burden
of living with a chronically mentally ill family member, thus indirectly
placing responsibility and blame on the family. Evidence of a
transactional process in EE was revealed in the results of a study
which showed that patients interacting with low-EE families made
significantly more statements about autonomy and fewer critical
statements than in high EE families (Strachan, et al., 1989).
In addition, studies have noted inconsistent findings in relation
to females (Hogarty, 1985), first-break patients (Stirling, 1991), and
the lack of attention to cultural factors (Jenkins & Karno, 1992).
The four major variations of family therapies that focus on
stress reduction, described in Falloon's (1984) work on family care of
schizophrenia, are reviewed:
(b)i Brief Focal Familv Approach: Goldstein's
(1978) crisis-oriented, problem-focused approach used a 6-session
family treatment format following inpatient hospitalization of an acute
episode. Both family members and patient attended weekly one-hour
sessions which provided non-standardized education about the
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relationship between stress and schizophrenia, and stress management
techniques.
At a six-month follow-up, the family therapy with moderate
medication dosage condition resulted in no rehospitalizations and lower
levels of symptomatology than the standard aftercare group (Gurman,
et al., 1986).
Gender differences were revealed when family therapy provided
on an inpatient basis was compared to usual inpatient care over a 5-
week period (Glick et al., 1985; 1990; Haas et al., 1988; Spencer et
al., 1988) After 6 months, only female schizophrenia patients with
good premorbid adjustment had some beneficial results from family
therapy, but at the 18 month follow-up, the effects for females
reversed, so that women with poor premorbid adjustment showed
small effects from therapy (Bellack & Mueser, 1993). Other
researchers found similar, modest results (Abramowitz & Coursey,
1989 (Smith & Birchwood, 1987; Cozolino et al., 1988).
(b); Familv Members Group: The family members
model is a variation of stress-reduction based on the EE studies
which revealed that families had considerable misinformation about
the illness (Brown et al., 1972; Vaughn & Leff, 1976), and that the
effect of high EE was less intense if patient contact with the family
member was reduced (Berkowitz, Kuipers, & Leff, 1981).
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The first controlled study that attempted to alter the
schizophrenic family member's home environment compared routine
clinical care with supportive family therapy for patients in high EE
environments (Berkowitz et al., 1981 ; Leff et al., 1982) reported that
those in the family treatment group had lower relapse rates and
reduced levels of EE (Leff et al., 1983) than the clinical care group.
(b)a Psvchoeducational Approach: Anderson and
associates (1980) addressed the vulnerability-stress hypothesis
directly with the theoretical assumption that schizophrenia produces a
"core psychological deficit" which interferes with the ability to
problem solve. The goal of the psychoeducational model is to diminish
environmental stressors by increasing knowledge about the illness by
patient and family, improving stress management skills, and enlarging
the family's social network.
The treatment is comprised of four phases; Phase 1 -
Connecting with the Family (bi-weekly sessions without the patient);
Phase 2 - Survival Skills Workshop for the Family (a day-long, multi
family format); Phase 3- Re-entry and Application of Survival Skills
Themes to Individual Families (weekly family sessions, which regularly
include the patient for the first time, gradually diminish to bi-weekly);
Phase 4- Continued Treatment or Disengagement (monthly
maintenance therapy or a more intensive family therapy).
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In a controlled study of the psychoeducation model, Anderson,
Reiss, and Hogarty (1985) randomly assigned 102 schizophrenic or
schizoaffective patients, maintained on medication and living in high-
EE households, to one of four family therapy and social skills training
(SST) combinations. After one year of treatment following discharge,
the combination of medication, family therapy, and SST yielded the
best results, with medication alone yielding the poorest relapse rates
(Attkisson, 1992). Two years of continuous treatment continue to
forestall relapse, but the SST effect was lost (Hogarty et al., 1991).
(b)4 Behavioral Familv Theraov Model (BFT): The
most comprehensive and inclusive of all the approaches, the home-
based BFT model employs many elements of the stress reduction and
EE approaches. All family members are involved at each of the four
stages of the process, and the goal is to utilize the family as the basic
resource for both reducing the incidence of relapse and to promote
improved psychosocial functioning (Falloon, 1984, p. 143).
BFT consists of four phases; 1-Thorough, on-aoino behavioral
analvsis of the familv as a unit, is conducted in the home; 2-
Education about schizophrenia and its management for patients and
families generally follows the psychoeducational approach of Anderson
and Hogarty (1980); 3- Behavioral communication training for
families is in a conjoint family therapy format, and based on previous
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behavioral analyses and current assessments; 4- A Problem-Solving
Approach specifies the problem in behavioral terms, and is followed by
detailed planning and implementation of the agreed-upon solution
(Falloon, 1984).
Studies have demonstrated the clinical effectiveness of BFT in
reducing relapse rates (Terrier & Barrowclough, 1988), as well as
reducing family burden at a two-year follow-up (Falloon, 1985).
Two studies comparing individual family therapy to multiple
family therapy (Leff et al., 1989; 1990; McFarlane et al., 1993)
demonstrated improved relapse rates for those that received family
therapy as compared to those who did not, but neither form of
treatment has been shown to be superior (Bellack & Mueser, 1993).
A recent controlled study integrated systematic and ongoing
psychoeducational family intervention with an assertive community
treatment model (McFarlane et al., 1996). Researchers concluded that
family involvement "enhanced rehabilitation and family-related
outcomes of assertive community treatment", and resulted in better
employment outcomes for the family therapy condition (McFarlane et
al., 1996, p.744).
In summary, a major advantage of the stress reduction theories,
unlike family system theories, is that they have been evaluated in
controlled, empirical studies, which focus on long term therapy and
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!
"A *
lengthy follow-up periods. Research suggests that therapies based on
stress reduction theories can reduce the frequency of relapse and lead
to improved psychosocial functioning.
The family support system is an integral part of community
treatment of schizophrenia. "Research has only scratched the surface
in understanding how family support can be harnessed to improve the
outcome of schizophrenia" (Glynn & Mueser, 1993, p.329).
4. Summary of Interventions Involving the Familv:
(a) The familv svstems theories (Weakland et al., 1974; Haley,
1959; Madanes, 1983; Selvini-Palazzoli et al., 1978,1980; Minuchin,
1974)., which have the goal of changing the family communication
patterns, have neither been proven nor disproven due to a lack of
controlled studies (Falloon, 1984). A small number of practitioners
continue to use the approach and case studies describe evidence of
the ability to change the behavior of the ill family member.
(b) Familv therapies based on vulnerabilitv-stress models have
been shown in controlled, empirical studies to be effective in reducing
relapse rates in schizophrenia, and therefore is the paradigm of choice
(Gurman et al., 1986; Goldstein, 1978; Berkowitz et al., 1981;
Hogarty et al., 1991; Falloon, 1984; Rohrbaugh, 1983).
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(c) Familv therapy for those living with their families is an
effective alternative to hospitalization. Families can fulfill multiple CSS
functions, and community care studies with patients living with their
families were superior in reducing symptomatology and improving
functioning as compared to the inpatient group (Pasamanick et al.,
1967; Langsley et al., 1968; Rittenhouse, 1970; Fenton et al., 1979).
(d) Brief, crisis-based approaches can be effective in
diminishing environmental stress and postponing relapse for up to 2
years, whether an individual is at home or an inpatient (Goldstein,
1978). Gender differences indicate brief inpatient family treatment is
best for female schizophrenics with poor premorbid adjustment (Glick
et al., 1985; Haas et al., 1988; Spencer et al., 1988).
(e) Familv communication skills training is related to increased
quality and quantity of family interactions and to a reduced level of
expressed emotion (EE) (Falloon, 1984). Reduction of EE in the family
living situation is related to reduced relapse rates (Berkowitz et al.,
1981). Though studies have often selected families rated as high-EE,
all types of families can benefit from a psychoeducational family
treatment approach (Leff et al., 1985; Hogarty et al., 1986; Strachan,
1992).
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(f) Familv education about schizophrenia, while not sufficient
by itself, is an effective and important ingredient in a comprehensive
treatment package (Hogarty et al., 1991; Strachan, 1992).
As a significant environmental factor, the family has been
increasingly seen as a vital component in treatment. The lack of
information that is currently available regarding the changing quantity
and quality of contact with family over time has impeded progress on
understanding how the family may continue to influence individual's
course of illness both positively and how it may hamper optimal
development. These gaps in our knowledge about the interaction with
family have important clinical and research implications for assessment
and treatment.
5. Theoretical Gaos
(a) Lack of description of the ouantitv and character of familv
involvement: In spite of the evidence regarding the ability of the
family to affect the course of illness (Brown & Birley, 1968; Brown et
al., 1972; Vaughn & Leff, 1976), and the demonstrated effectiveness
of family interventions based on vulnerability stress models of
schizophrenia (Anderson, et al., 1980; 1986; Hogarty et al., 1986;
1987;1991; Berkowitz et al., 1981; Goldstein, et al., 1978; Falloon,
et al., 1984), there is virtually no information available regarding the
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character and frequency of family contact as it changes over time.
This is a fundamental gap in our understanding of the course and
treatment of schizophrenia, and of the role that families play in the
lives of their ill family member over time.
There are estimates that 50-90% of persons with schizophrenia
remain in contact with their families if they do not live with them
(Fadden et al., 1987; Lefley, 1987). In one of the first studies to
investigate family interaction patterns in a sample of
noninstitutionalized adults with schizophrenia, differential psychosocial
outcomes were reported based on living situation (in or out of the
parental home), and whether contact was maintained with the family
(Brekke & Mathiesen, 1995). The study reported that 64% of the
subjects in their sample not living in the family home remained in
contact with their parents an average of twice a week. But
researchers, clinicians, and families have no information regarding how
the levels of contact may change over time. The changing patterns in
the amount and quality of the contact, in terms of the level of
satisfaction with family relationships, the family presence in the
individual's social network, and levels of independence from family,
are important data to gather in order to individualize and target
interventions effectively.
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(b) Lack of information about those not living with families:
Interventions designed to educate the family about schizophrenia and
modify communication patterns between the individual and family
have been shown to be effective in reducing relapse rates (Goldstein,
1978; Berkowitz et al,, 1981; Leff et al., 1982; 1989; Anderson et
al., 1980; 1986; Hogarty et al., 1986; 1987; 1991; Falloon, 1984;
Tarder et al., 1988; McFarlane et al., 1993; 1996), But most studies
have focused on individuals recently discharged from the hospital
and/or living with their families. The number of individuals who are
residing with their parental family is estimated variously at 30-40% of
all those diagnosed with schizophrenia (Fadden et al., 1987; Lefley,
1987).
A study by Carpentier et al. (1992) found that twenty-two of
the thirty-seven persons in their sample did not live with their parents,
but spent an average of 18 hours per week in contact with them.
Those in the sample were aged 18-30, and were required to either be
living with relatives or in contact with them. The authors drew
attention to the fact that little study has been conducted on family
Influences of the large portion of persons diagnosed with schizophrenia
but not residing with their family. They also called for longitudinal
studies to determine if involvement with family changes over time
(Carpentier et al., 1992).
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1
Few studies have focused on persons who are community-
based and more stable in terms of the virulence of the schizophrenia.
Little is known about family involvement when the family member is
living in the community, and how best to utilize the family in
community rehabilitation programs.
The relationship between family interaction and the psychosocial
functioning of the patient has received little attention in the literature.
Two studies have found that positive family interaction styles were
associated with higher quality of life for the schizophrenic member
(Halford et al., 1991; Sullivan et al., 1991). Measures of the severity
of symptoms, self-esteem, quality of life, and assessments of family
environments were used in the cross-sectional studies.
Brekke & Mathiesen's (1995) study was one of the first to
investigate family interaction patterns in relation to psychosocial
outcomes in a sample of community-based adults with schizophrenia.
Seventy-seven percent of the subjects did not live with their parental
families at any time during the previous six months. Subjects who did
not live with their families scored significantly higher on global
functioning and on measures of contact with friends, dating, number
of days worked, independence from family, and stability of living
situation. If subjects living away from families remained in contact
with them, they had significantly higher scores than those without
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contact on measures of days worked and overall role functioning.
Those who lived with their families were less likely to have been
victimized or to have used substances (Brekke & Mathiesen, 1995).
The results of this study suggest the need to address living
situation as an important variable in psychosocial rehabilitation.
Researchers must begin to map the family networks as they
exist beyond the family home. Family support has only begun to
be understood in terms of its value in improving outcomes
(Glynn et al., 1993).
(c) Lack of understanding of client characteristics in relation to
familv involvement: Differences based on gender, ethnicity, age, and
phase of illness in relation to family involvement have had little
attention in the literature.
Gender Differences in Schizophrenia: Gender differences have
been revealed in the onset, course, and symptomatology of
schizophrenia. Lewine's (1981) review of the literature found that
males have consistently have poorer premorbid adjustment, have
earlier hospitalization, and are more likely to show "negative"
symptoms (Wahl & Hunter, 1 992). Schizophrenia Bulletin devoted an
issue to gender differences in premorbid functioning, onset and course,
symptomatology, treatment response, and brain morphology
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(McGlashan & Bardenstein, 1990; Lewine et al., 1990; Goldstein et
al., 1990; Angermeyer et al., 1990; Childers & Harding, 1990). Wahl
& Hunter's (1992) review concluded that in spite of substantial
research that reports different patterns of onset, course, and
symptomatology based on gender, males still outnumber females in
schizophrenia research two to one (Wahl & Hunter, 1992).
There is also evidence in the literature of differential effects of
family therapy based on gender. Bellack & Mueser (1993) reported
that when family therapy was provided on an inpatient basis as
compared to usual inpatient care, only female patients diagnosed with
schizophrenia who had a good premorbid adjustment showed
beneficial effects at 6 months. At 18 months, the effects for females
only reversed, so that women with poor premorbid adjustment showed
small effects (Glick et al., 1985, 1990; Haas et al,, 1988; Spencer et
al., 1988). Other researchers found similar results (Abramowitz &
Coursey, 1989; Smith & Birchwood, 1987; Cozolino et al., 1988).
Researchers must strive for a balance of males and females in
their samples, and routinely analyze their results for gender
differences, even when such differences are not the focus of the study
(Wahl & Hunter, 1992). The overrepresentation of males in
schizophrenia research, and the evidence of gender differences in
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family therapy highlights the need to investigate potential gender
effects in relation to family involvement.
Ethnic Differences in Familv Treatment: A review of cross-
cultural studies of chronic mental illness (Lefley, 1990) discussed
differing cultural view in terms of chronicity (Fabrega, 1989; Lin &
Kleinman, 1988), with traditional societies exhibiting "long-term social
relationships and extended kinship networks" (Lefley, 1990, p. 278).
A low incidence of expressed emotion has been found in developing
countries (Wig et al., 1987) as well as in traditional cultures within the
United States (Jenkins et al., 1986), which some have linked to better
outcomes (Westermeyer, 1989; Leff et al., 1987).
There is little research on ethnic differences in relation to family
intervention, but Lefley (1990) points out that it would be incongruent
not to involve the family in treatment decisions. Rivera (1988)
preferred the educational, problem-solving approach as especially
appropriate for Latino families.
One study looked at the differences in levels of family
involvement in Asian and Caucasian families with a member diagnosed
with schizophrenia (Lin et al., 1991). Results indicated that Asian
families were more intimately involved in treatment than Caucasian
families. In the Caucasian families, nearly 50% of families remained
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completely uninvolved, while nearly all Asian families had at least one,
and often two family members present for each family interview.
The changing patterns In the amount and quality of family
involvement based on ethnicity must be explored so that treatment
can be responsive to individuals and families as they manage the
changing demands of the illness.
(d) Lack of understanding of the relationship between intensive
communitv rehabilitation treatment and familv involvement. The
previous review of family interventions revealed that families have a
significant impact on the course of schizophrenia. But families are
often excluded from rehabilitation planning of their ill relative, which
has often resulted in their dissatisfaction with mental health service
providers. Families have information regarding the strengths and
interests of their family member that have the potential for developing
more effective rehabilitative efforts (Lefley, 1987; Winefield, et al.,
1994; Hyde, et al., 1993). Little knowledge exists concerning family
involvement patterns when individuals are participating in intensive
community rehabilitation treatment, or how the family can be more
effectively utilized. Researchers, clinicians, and families need to
understand how family contact differs when the patient participates in
community-based treatment.
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(e) Lack of a developmental model of familv involvement:
Researchers decry the lack of knowledge regarding the individual with
schizophrenia over the life span, urging the need for longitudinal
studies to determine the changing patterns of the illness and
sociocultural factors that may influence course (Ciompi, 1987; Wynne,
1988; McGlashan, 1988; Carpenter, et al., 1990; GAP, 1992;
Belitsky & McGlashan, 1993).
While researchers have suggested that psychosocial factors may
play different roles at different stages in the development of the illness
(Straube & Oades, 1992), there has been scant conceptual
consideration of the impact of the changing life course of the illness
and its effect on individual and family developmental tasks.
Bellack & Mueser (1993) have called for research which will
help to determine which phase of illness is best for intervention.
Longitudinal designs allow researchers to determine the implications
for treatment at different stages of life, and at different phases of the
illness. Researchers have called for investigations as to the changes
that occur biologically, socially, and psychologically after age 30 to
persons diagnosed with schizophrenia (GAP, 1992). Some have
suggested that the mid-phase of schizophrenia may be an untapped
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"window of opportunity" for productive intervention (Glynn & Mueser,
1993).
The value of the family in various roles in the treatment process
has begun to be recognized (Intagliata, Wilier, & Egri, 1986; Spaniel,
Zipple, & Lockwood, 1992). An integrated, developmental
perspective of the family as both requiring assistance to maximize their
understanding about the illness and help the family member, and as an
important component in the treatment process, accommodates
interventions geared toward both the acute and long-term processes.
The quantity and character of the ongoing and changing
relationships with families must be understood in relation to the phase
of the illness. A developmental perspective would allow individuals and
families to be viewed in a normative context, as well as in relation to
the effect of the illness. Critical transition points and phases could be
identified, providing a method for targeting interventions more
effectively (GAP, 1992). Understanding the extent to which the
changing demands of illness and caregiving coincide with the social
structure of the family over time is important to helping families cope
and adapt effectively with one of life's greatest challenges.
A model is needed which incorporates the three separate
strands of individual development, family development, and illness
over the life span (Rolland, 1994). Adapted to particular aspects of
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schizophrenia, such a model would provide the comprehensive,
longitudinal, developmental view of the illness necessary to address
both the acute and quiescent phases of the illness, and establish a
clinical stance that not only focuses on illness, but respects and values
the individual and the uniqueness of each person's life course.
Rolland's psychosocial developmental model will be explicated, and
then adapted for schizophrenia.
D. Rolland's (1994) Familv Svstems/IHness Model
The purpose of this section is to describe Rolland's (1994)
Family Systems/Illness model as conceptualized primarily for chronic
physical illnesses, followed by the individual and family life cycle
theories drawn upon by Rolland (1994). These theories provide a
further basis for hypotheses regarding changing family contact based
on age and phase of illness.
A modified version of the model (Mathiesen, manuscript in
preparation) designed to address the unique demands of schizophrenia
is followed by an example of the changing response to the illness by
individual and family members over the life cycle.
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1. Familv Svstems/lliness Model (Rolland. 1994)
The Family Systems/lllness mode! was developed primarily for
conceptualizing chronic physical illness and disability, and has been
very useful in providing a structure for the complexity of the three
strand formulation. The foundation of the model is developed in two
parts: 1- the psychosocial illness typology, and 2- the time phases of
the illness. The following description is based on Rolland's most
recent work (1994).
The typology of illness was designed to be a tool for
conceptualizing the psychosocial tasks and demands due to the illness
that are imposed on the individual and family by variations in onset,
course, outcome, and level of incapacitation. Each time phase of
illness (crisis, chronic, and terminal) presents specific developmental
changes and psychosocial tasks to the individual and family.
(a) Illness T vdoIogv: The categories are clinically
meaningful, those most relevant to the psychosocial issues of many
illnesses, and also related to the developmental tasks at different
phases of the illness. Each variable is a continuum, with the category
distinctions serving as guideposts (Rolland, 1994).
(a)i Onset: Acute or gradual: Distinctions are
made as to the presentation of symptomatology, not necessarily
biological development. Illnesses with gradual onset require
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readjustment of the family structure, roles, and coping styles over a
protracted period, but may induce greater anxiety prior to definitive
diagnosis. Acute onset requires the same adaptations, but in a
compressed time period that requires rapid deployment of family
resources under highly emotional conditions.
(a); Course: Progressive, constant, or
relaosina/eoisodic: Progressive illnesses are those that are continually
symptomatic and increasing in severity, and families are required to
continually adapt to new stressors and uncertainty. Caregiving burden
continues to grow over time, resulting in potential exhaustion and
"burnout". Constant courses are those in which there is an initial
event, followed by a stabilized condition. The residual effect is a semi
permanent deficit predictable over long time periods. This course
facilitates resumption of normal family patterns, once the individual
and family have learned to manage the disability. Relapsing courses
are characterized by relatively symptom-free periods of varying length
alternating with periods of exacerbation (Rolland, 1994). Family and
individual coping patterns must be flexible, so as to permit the
changing roles of family members depending on the status of the
illness. The continual uncertainty as to when the next crisis will
occur, combined with the strains of the crises themselves, make this
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course of illness uniquely stressful and psychologically challenging,
regardless of the degree of biological severity.
(a)3 Outcome: Fatal. Possibly Fatal/Shortened
Lifespan. Nonfatal: The primary difference among outcome types is
the degree to which the family anticipates loss and its effect on the
family. The ambiguity resulting from uncertainty about the eventual
end, especially in chronic illnesses, provides fertile ground for
maladaptive responses and idiosyncratic family interpretations
(Rolland, 1994).
(a)4 Incapacitation: Incapacitating. Non-
Incapacitatino: Disability may result from deficits in cognition or
mental functioning, sensation, movement, decreased energy
production, disfigurement or other social stigma (Rolland, 1994). The
degree of incapacitation results in different adaptations for the family,
with some illnesses requiring more adaptation at onset (such as acute
illnesses with constant courses), and others in which disability
demands increased family coping over time (such as progressive
illnesses in the later phases).
The result of the combination of onset, course, outcome, and
incapacitation subgroups is a matrix of potential psychosocial types of
illnesses. The biological determinants of each illness produce unique
psychosocial demands. For example, a stroke has an acute onset,
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constant course, can shorten life, and is disabling. The degree of
psychosocial demands on the individual and family by a particular
illness can be assessed by conceptualizing illness as a result of these
four interacting aspects.
(a)g Metacharacteristics: Rolland proposed that
the degree of uncertainty/predictability in the nature of the illness or
the rate of change was a metacharacteristic that influenced all the
other factors. The greater the degree of uncertainty of outcome, the
greater the need for flexible contingencies and problem-solving styles
in normally complicated family decisions. The process can derail the
most resilient and adaptive families (Rolland, 1994).
In addition, the culture and beliefs of the family are critical
elements that may influence family functioning when confronted with
a chronic illness. Family beliefs regarding normality and causation of
illness and disability, their ability to control the illness, and their level
of adaptability will have a strong influence on their functioning over
time. In addition, cultural and religious beliefs have enormous power
in family life, and may translate into different patterns of behavior at
different phases of the illness.
Other factors that may have implications for individual and
family adaptation are: the visibility of symptoms (visible symptoms
increase social stigma, but allow for more objective interactions with
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the patient than invisible symptoms, which increase ambiguity for the
family); the probability and severity of crises (recurring crises
increase family anxiety); genetic transmission (inadequate family
knowledge may result in blame and victimization); and treatment
regimens (treatments vary in intensity, family involvement, and
disruption of normal functioning).
(b) Time Phases of Illness: The dimension of time adds a
critical component to the characterization of chronic illnesses that
allows examination of specific developmental tasks at each time
period. Each phase demands "significantly different strengths,
attitudes, or changes from a family" (Rolland, 1994, p.43). The time
phases in the model are divided into crisis, chronic, and terminal.
(b)i Crisis Phase: The crisis phase often begins
with a period in which symptoms are noticed, but the diagnosis has
not been made. It includes the initial period of readjustment after
diagnosis and the initial treatment plan. Developmental tasks for the
family are (1) to become acquainted with systems concepts to foster a
sense of empowerment; (2) gain an understanding of the illness in
systems terms, such as the course of illness and the developmental
tasks related to each phase; (3) create a view of the illness that
preserves each family member's sense of competence (Rolland, 1994,
p.45). Additional developmental tasks include the need to grieve for
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the loss of the family image that existed prior to the crisis, the need to
accept the permanence of the change while remaining connected to
the past and future, the need for short-term crisis reorganization, as
well as the development of a flexible system for future goals
(Rolland, 1994).
(b)2 Chronic Phase: This phase includes the time
between the diagnosis and initial readjustment, and the terminal phase.
Often called the "long haul", it can be constant, progressive, or
episodic in nature, as the individual and family adapt to the realities of
daily life with chronic illness.
The key task of this phase is for the family to develop a normal
family life in the face of the uncertainty, limitations and constrictions
placed upon it by the illness. The maximum autonomy possible for
each family member is to be preserved to counteract the gravitational
pull of dependency and caregiving.
(b> 3 Terminal Phase: The terminal phase begins
with the point at which the clear prognosis of death is present, and
includes mourning, bereavement, and resolution of loss (Rolland,
1994).
A key developmental task is to accept the inevitability of loss,
and release the hope for a cure. Decisions regarding redefinition of
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family roles, last wishes, the extent of medical intervention, and
competency issues need to be resolved.
(b)4 Transition Periods: The time periods between
the three phases described are important in themselves, and represent
critical points of leverage in adaptation.
When issues remain unresolved from previous phases, the next
transition can become very difficult. The move from crisis to chronic
is the most difficult transition to negotiate and the most significant in
terms of the ability of the family to reevaluate their coping and
adaptation. A family that became competent at marshaling resources
and drawing together as a family in a crisis phase may find the same
behaviors maladaptive in the chronic phase. The developmental goal is
for the family to set its course based on what has been learned in the
early phase.
The transition from the chronic to terminal phase requires that
the individual and family move from day-to-day coping to skills that
will allow affective expression. Families that have adopted rigid
coping styles and have avoided emotional expression as to the
meaning of the illness will experience difficulty as the terminal phase is
approached.
The combination of the typology of illness and the time phases
provides a structure for a psychosocial developmental model of chronic
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illness. The illness phases may be viewed as developmental periods in
the life cycle of the illness, akin to individual and family developmental
periods. Each phase is comprised of certain basic tasks regardless of
the type of illness.
2. Individual & Familv Life Cvcle Theories
Rolland drew on the concepts of transitions in the life cycle as
explicated by Carter & McGoidrick (1989) and Levinson (1978), as
well as the fluctuating levels of family cohesion described by
Combrinck-Graham (1985) to synthesize the three evolutionary
streams of individual, family, and illness development. The concept of
an evolving life structure over the life cycle is developed in terms of
age-linked stages (Levinson) as well as eras delineated by marker
events (Carter & McGoidrick). The specific life cycle concepts of
Levinson (1978; 1986), Carter & McGoidrick (1989) and Combrinck-
Graham (1985) are described, followed by the synthesis of the model.
(a) Age-Linked Stages (Levinson. 1978): Rolland applied
Levinson's individual adult theory of life structure to the entire family.
The life structure is defined as all the elements (intimate relationships,
work, social roles, family and marriage, self-image) that form the
boundary between the individual or the family and the environment,
and mediate the interactions between them (Levinson, 1978). "A
theory of life structure is a way of conceptualizing answers to the
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question, "What Is my life like now?" (Levinson, 1986, p.6). The
importance of each element will change over the course of the life
cycle.
Levinson delineated five life cycle eras, each with specific
developmental tasks and lasting approximately twenty years: 1 -
Preadulthood (childhood and adolescence, up to approximately age
22); 2-early adulthood (from age 17 to 45); 3-middle adulthood (from
age 40 to 65); 4-late adulthood (age 60 to 80); 5-1 ate, late adulthood.
The life cycle eras are connected by alternating structure
building/maintaining periods which tend to be stable, and structure
changing periods which signal transition to a new life cycle era. Each
of the linking periods lasts from five to seven years.
The developmental goal of a structure building/maintaining
period is to use the decisions and growth from the previous transition
period to protect and continue the current life structure. The goal of
the transition periods is to carefully weigh different options for the
individual and the family, which will serve as a plan for the next life
cycle phase.
Transitions from one phase to the next are the points at which
individuals and families are the most vulnerable, due to the task of
réévaluation of previous life structures. As life structures for individual,
family, and illness are reappraised in terms of new developmental
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tasks, minor adjustments may not be sufficient, and discontinuous
(second order) change may be required (Hoffman, 1989). Second
order change indicates a systemic change (how things are done),
rather than a change in what is done (first order change). Levinson's
alternating eras and transitions are described in the following section.
Preadulthood Era: The primary task in childhood and
adolescence (up to age 22) is to establish the distinction between
"me" and "not me" in a process of continuous individuation from
family and other aspects of the preadult world (Levinson, 1986).
Early Adult Transition: The early adult transition (from age 17
to 22) requires that the newly emerging adult modify family and other
social relationships, and begin to create a niche in the adult world.
Preadulthood has been accomplished, and early adulthood has begun,
resulting in a critical transition period.
Early Adulthood Era: Early adulthood (from 17-45) can be the
time of greatest reward and also of greatest stress. The individual
must pursue early goals, define a distinct place in society, raise a
family, and assume a more "senior" position as an adult (Levinson,
1986). A transition period around age 30 is a time for reappraisal of
the life structure, and preparation for the final segment of early
adulthood.
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Midlife Transition: At age 40 to 45, the midlife transition
results in an appreciable change in lifestyle as early adulthood is left
behind. The developmental task is to achieve a new level of
individuation. The degree to which the individual is successful in the
task determines whether the result is increased compassion, empathy,
and inner peace, or an increasingly stagnant and unproductive life
(Levinson, 1986).
Middle Adulthood Era: In middle adulthood (40-65), taking
responsibility for one's own work and maintaining "senior member"
status of that self-created world is the paramount task. Stimulating
and guiding the next generation, as well as often assuming
responsibility for their work, is an additional demand. A transition
around age 50 allows for mid-era modification of middle adulthood.
Late Aduit Transition: The late adult transition lasts from age
60 to 65, and is the result of the gradual recognition and experience of
physical decline and the culturally defined change of generation in the
60s to "old age" (Levinson, 1978).
Late Adulthood Era: The developmental task of the decades
from 60 to 80 is to end an earlier life structure and find an appropriate
balance between the energy, interests and inner resources of youth
and age. The loss of "center stage" must give way to a new
involvement with society and the self.
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Levinson’s model provides distinct, age-linked developmental
eras for the entire life cycle, and emphasizes the importance of
transitions from one era to the next. His hypothesis for the underlying
order of the human life cycle is empirically grounded, and meant to
provide a starting point for the individual variation in life course that is
a result of the influences of biology, personality, culture, social roles,
and major life events (Levinson, 1986).
(b) Marker-Event Stages (Carter & McGoldrick (1989):
The family life cycle is divided into six stages, each with unique
emotional changes as well as second-order (system) changes that are
required for a family to proceed developmentally. The stages are; 1-
leaving home (single young adults), 2-joining of families through
marriage (young couples), 3-families with young children, 4-families
with adolescents, 5-launching children and moving on, 6-families in
later life.
Marker events signal a transition from one phase to the next,
and there is a bi-directional influence exerted. An event, such as
marriage or chronic illness, can both affect the nature of the
developmental cycle, and also be affected by its developmental timing.
The family life cycle phases indicate points at which family members
enter and exit, and proceed developmentally. The following
descriptions of family developmental changes, and the transitional
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attitudes that allow the family to proceed through them, are from
Carter & McGoldrick (1989):
Unattached Young Adult Phase: A family attitude of
acceptance toward the young adult's separation from the group is
necessary. Establishment of new peer relationships and a work
identity, as well as individuation in relation to the family, are the key
developmental tasks for the young adult.
Newly Married Couple Phase: As families are joined through
marriage, commitment to the new system is essential. Development
requires not only the formation of a new marital system, but
readjustment of the family of origin relationships and friendships to
include a spouse.
Family With Young Children: Additional members of the family
must be met with acceptance for the family to proceed
developmentally. Adjustment of the marital system, acceptance of
parental roles, and further realignment of the extended family to
accommodate grandparent roles occurs at this stage.
Family With Adolescents: A flexible attitude toward the
children's increasing independence will allow the parental roles to
develop. The adolescents will enter and exit the system, resulting in a
focus on the marital couple's relationship and career issues, as well as
recognition of the needs of the older generation.
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Launching Children and Moving On: The rate of entry and exit
increases at this phase, and acceptance of such instability is essential.
The marital couple must reestablish its own relationship, its parental
relationship with adult children, changing responsibilities for their aging
parents, and establishment of relationships as grandparents and in
laws.
Family in Later Life: The required emotional transition attitude
at this phase is one of acceptance of the changing generational roles.
The developmental challenges include acceptance of physiological
changes, and eventual loss of spouse, siblings, and peers, as well as
personal mortality. The task is to acknowledge the wisdom and
experience of the older generation, while helping them to maintain
autonomy, and to support the central role of the middle generation,
maintaining individual/couple interests and functioning.
Carter & McGoldrick’s conceptualization of the young
unattached adult as the cornerstone of family development recognizes
that unresolved issues with the family of origin will have a profound
impact on whether, when, and with whom a new family will be
created. All subsequent phases will also be influenced as the family
expands, contracts, and realigns over the life cycle (Carter &
McGoldrick, 1989).
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(c) Centripetal vs. Centrifugal Periods in the Family Life
Cycle (Combrinck-Graham. 1985): The concept of centrifugal and
centripetal forces operating at different points in the family life cycle is
useful in combining the individual, family, and illness developmental
process (Beavers & Voeller, 1983; Combrinck-Graham, 1985). A
family spiral model depicts three generations of a family alternating
through the life cycle between eras of high cohesion (centripetal) and
lower family cohesion (centrifugal). Ideally, the periods coincide with
family developmental tasks that require similar levels of cohesion
(Rolland, 1994).
The concept describes the "goodness of fit" between
developmental tasks and the relative need for internal and group
cohesive energy to accomplish the tasks. For example, during the
family life cycle period of child rearing, the individual and the family
have a life structure that emphasizes the solidarity of family life. The
"pull" is inward, and centripetal forces allow outside boundaries to be
strengthened, while boundaries between family members become
more diffuse, as the family operates as a unit. As the family
transitions to a centrifugal period such as adolescence, individual and
family developmental tasks require a loosening of the external
boundaries. An outward "push" away from center occurs, and
individual boundaries between family members become more defined
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in response to developmental tasks. There is a natural dismantling of
old structures.
(d) Rolland's (1994) Application of Life Cvcle Theories:
Rolland theorizes that illness and disability exert an inward pull or
centripetal force upon individual and family members, and will vary a
great deal according to the illness type and phase. The onset of a
chronic illness is seen as the addition of a new member of the family,
setting the stage for a period of high cohesion. "Symptoms, loss of
function, the demands of shifting or new illness-related roles, and the
fear of loss through death all serve to make a family turn inward"
(Rolland, 1994, p.109). The following sections represent Rolland's
conceptualization of the forces of illness interacting with the family
Rolland, 1994).
(d)i Periods of less cohesion: If the onset of a
chronic illness occurs at a centrifugal point in the family life, the family
may be derailed (Rolland, 1994). The individual and family members'
autonomy is placed at great risk due to the new demands for cohesion
due to illness coinciding with naturally lower demands of a centrifugal
phase. Family dynamics and the severity of illness will determine
whether the return to high cohesion is temporary or whether the
change will be a permanent, involuntary alteration in developmental
paths.
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(d)2 Periods of greater cohesion: If the onset of a
chronic illness occurs at a point in the life cycle which requires greater
cohesion (centripetal), there is a risk that the pull of the illness and the
pull of the life cycle phase will amplify each other (Rolland, 1994).
Previous levels of family functioning will affect the outcome.
Marginally functioning families may deteriorate into severe dysfunction
due to the mutual reinforcement of the individual and family
developmental needs and the demands of the illness. At best, the
centripetal period will be prolonged; at worst, the family may become
frozen at this stage and become enmeshed. Other families may
survive the initial stage, but when faced with the developmental
changes of adolescence, for example, the long-standing and rigid
patterns of cohesion clash with the need for autonomy, and the family
system may break down.
(d)g Cohesion & Psvchosocial Tvooloov: The
degree of inward pull exerted by chronic illness increases as the level
of incapacitation or risk of death increases (Rolland, 1994).
Progressive illnesses, which require a continual inward family focus,
require greater cohesion than those illnesses with a stable course.
Relapsing illnesses alternate between requirements for greater family
cohesion, and periods of release from the demands of the illness
(Rolland, 1994). But the uncertainty as to when the individual and
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family may need to shift to another mode tends to keep some
members of the family in a centripetal mode, even when the ill
member is asymptomatic.
(d)^ Cohesion & Time Phases: The time phases of
the illness can be thought of in terms of the developmental stages of
the family (Rolland, 1994). The crisis phase, requiring high cohesion,
is analogous to the childhood era. The chronic phase, whose primary
task is to establish autonomy within the restrictions of the illness, is
much like adolescence and adulthood, with less cohesion required.
The terminal phase corresponds to that of later life, during which a
return to family occurs as a result of physical decline and increased
caregiving tasks.
(d); Transition periods: The time of onset is critical
to a developmental concept, as the illness will force a family into a
transition period which is characterized by the family task of adapting
to possible loss or death (Rolland, 1994). If the onset occurs when a
family is already in a transitional period, previously unresolved issues
will be magnified in intensity. There is an increased risk of the illness
being inappropriately ignored or becoming the sole focus of the next
developmental stage. For example, a father's progressive and
incapacitating illness that occurs during a transition from teenagers
living at home to one in which they are separating from the family may
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result in the teenagers delaying or abandoning plans to move out in
order to help care for the family.
(d)g Structure-maintaining periods: If the onset of
the illness occurs during a life structure maintenance period for the
individual or the family, the disruption may be more devastating than
changes required during a transition period, when decisions and plans
are still in flux (Rolland, 1994). In the previous example, if the illness
had occurred during a structure-maintaining period when the son was
established in his own marriage and career, the changes necessary to
accommodate the family needs would have much more disruptive.
Rolland (1994) summarized the concept of "out-of-phase"
illness as follows:
1 - Chronic illnesses exert an inward pull and require
increased family cohesion, and are particularly
disruptive to families in a developmental phase
characterized by lower cohesion.
2- Onset of a chronic illness creates a period of
transition whose duration and intensity depend upon
the psychosocial typology of the illness. The forced
transition will be particularly out-of-phase if it
coincides with a structure-building/maintaining
period in the lifecycle.
3- If the illness is progressive, relapsing, or life-
threatening, it will unfold in a manner that will
require a number of transitions. The family will need
to change the illness life structure more frequently,
keeping the disease in the forefront of
consciousness and interfering with attempts to
return to normal developmental progression.
4- The transition from the crisis to the chronic phase
of the illness may represent a window of opportunity
for the family to relax the intensity of living with the
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illness, and correct the developmental course. The
degree of alteration of developmental priorities is an
excellent barometer of family dynamics, (p. 1 2 2 )
The model replaces the conventional normative/non-normative
view of the timing of onset of a chronic illness. Chronic illness in late
adulthood was seen as a normal part of development at a time when
illness and death issues were common. Serious illness at other
junctures was considered non-normative due to untimeliness, and the
tendency to be more developmentally disruptive (Neugarten, 1976;
Herz, 1989). The family systems/illness model instead emphasizes
the "goodness of fit" between individual, family, and illness
development, and how the fit may change over the course of the
illness.
3. Familv Svstems/lllness Model Adapted For Schizophrenia
The model as conceptualized and described by Rolland must be
adapted in some areas to address the characteristics of schizophrenia,
the existing state of knowledge, and to allow testable hypotheses to
be formulated.
The developmental perspective conceptualized by Rolland
(1994) utilized normative age-linked changes for an individual over the
life span (Levinson, 1978). In addition, the fluctuating levels of family
involvement over three generations as the family moves through its life
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cycle were presented (Combrinck-Graham, 1989) to combine the
individual and family processes.
The adaptation of the model includes the synthesis of the age
categories of Levinson (1978) with the centrifugal-centripetal cycles of
family involvement of Combrinck-Graham (1989). As Combrinck-
Graham's model uses the three-dimensional concept of a spiral
consisting of three cycles, the spiral was conceived in two-dimensional
terms and laid flat. The result is an undulating curve that represents
the life cycle of a family in terms of higher and lower levels of family
cohesion and involvement.
Levinson's age categories for the individual were then included
in the developmental cycle of the family. Combrinck-Graham's family
life cycle period of child rearing was matched to Levinson's age
period of being a young child, when the force is centripetal or tends
toward increased family cohesion. The family life cycle period of
having adolescent children in the home was merged with the individual
age stage of adolescence, a time of moving away from family ties and
decreased family cohesion (centrifugal forces).
The age-linked stages and transitions, combined with the two-
dimensional spiral model of fluctuating family cohesion levels, provides
a graphic depiction of the normative ebb and flow of an individual
within the family over the life cycle.
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This synthesis also allows specific hypotheses to be formulated
regarding the expected level of family cohesion at a particular age. As
Levinson's stages were generated by empirical work with a population
without chronic illness, it is important to test the hypotheses to
determine if these normative age-linked stages hold for a sample of
individuals diagnosed with schizophrenia.
As little is known about the population regarding the quantity of
parental involvement over time, testing the age-linked hypotheses will
assume a normative, developmental perspective. If parental contact
does not vary as predicted by normative age categories, the data will
provide important baseline information as to how the patterns of
contact emerge for those at various ages when schizophrenia is
present.
The change in the family fluctuations will also vary according to
aspects of the illness contained in the typology. Figure 1 presents the
typology based on Rolland's model, as adapted for schizophrenia.
The two major aspects of the model will be explicated: (a) typology
and (b) time phases of the illness.
7 4
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FAMILY SYSTEMS/ILLNESS MODEL (Rolland, 1994)
________ ADAPTED FOR SCHIZOPHRENIA Figure 1
PSYCHOSOCIAL TYPOLOGY OF ILLNESS
Onset:
A. Timing: Early Late
B. Trajectory: Acute Insidious
Course:
A. Progressive Constant Relapsing
B. Patterns of Psychotic and Residual Symptoms
C. Level of Psychosocial Incapacitation in Role Functioning:
Social Work Self-Care
Outcome: Variation in Late Stage: Deterioration Improvement
Gender: Male Female
TIME PHASES
OF ILLNESS
Early Phase
Mid Phase
Late Phase
Transitions
DEVELOPMENTAL TASKS FOR
INDIVIDUAL & FAM ILY
Understand systems concepts;
Understand Illness in systems terms (developmental
perspective and phasesi to preserve all members'
competence;
Grieve for loss of prior family image; acceptance of change;
Short term crisis reorganization;
Develop flexible systems for goals.
Develop normal family life in face of uncertainty and limits
of illness;
Preserve maximum autonomy for all members to counteract
centripetal force of illness.
Acceptance of changing generational roles, physiological
changes, losses;
Define new balance between youth and age.
Early to Mid Phase: Most difficult transition, but the best
time for individual and family to re-evaluate coping and
adaptation;
Set new course based on leaming in Early Phase.
Mid to Late phase: Move from day-to-day coping to
expression of affect;
Réévaluation and acceptance of losses and changing roles.
Metacharacteristics: Overall degree of uncertainty
Culture and beliefs
Adapted from J.S. Rolland (1994). Families, illness, and disability. New York: Basic Books.
7 5
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(a) TvDoloav of the Illness
(a)i Age of Onset: The acute or gradual onset
types (rates of onset) have been identified as essential parameters in
identifying course types in schizophrenia (Marengo, 1994), and have
been used in long-term follow-up studies (Bleuler, 1978; Ciompi,
1980). The additional category of early or late onset is an important
modification (McGlashan, 1988; Jeste, 1993). "Age of onset is the
single most important clue to the etiology of (schizophrenic) illness",
and two distinct times of onset have been identified (DeLisi, 1992,
p.212). The differences in the developmental disruptions between
early onset, where brain defects affecting language processing are
likely, and late onset, where recovery from acute episodes may be
easier due to fewer developmental deficits, are important aspects of
the illness that need further research (DeLisi, 1992).
The DSM-IIIR (American Psychiatric Association, 1987) allows a
diagnosis of schizophrenia to be made after age 45, the newly defined
late-onset patients (DeLisi, 1992). Recent clinical research found
fewer negative symptoms in persons with late onset schizophrenia
than in early onset (Yassa & Suranyll-Cadotte, 1993). Including the
age of onset into the typology will facilitate a systematic approach for
research designs and interpretation.
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(a>2 Gender: A category indicating the gender of
the person with the illness is an important addition. As discussed in a
previous section, research has shown that gender has implications for
the developmental perspective in schizophrenia. Young men appear to
be more at risk for a poor outcome than young women (Leventhal et
al., 1984), which may be related to generally earlier age of onset
(Loranger 1984), different role expectations for men, or biological
differences (GAP, 1992).
Men will tend to have more difficulty in the early developmental
stages, due to limitations related to schooling, socialization, or
independent living. There is recent evidence that women may not
display the same type of illness plateau as men (GAP, 1992), and may
represent a greater caregiving burden for families (Winefield et al.,
1 993). Women may encounter more adjustment in the later stages,
such as during parenthood or menopause. Better outcomes for women
in the past may have been related to their increased tendency to be
married, and to have a spouse and/or children to assist them in their
illness. But later studies have suggested that while young women
with schizophrenia are not as likely to be married as in the past, they
may still be a parent. An inability to have children, or the loss of
parental rights due to illness, may increase stress in later
developmental stages (Salonkongas, 1983; Seeman, 1986).
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(a)3 Outcome: The "fatal" outcome category
should be eliminated from the typology. Schizophrenia is not in itself a
fatal illness, but it does result in "an increased risk of suicide, physical
illness, and early death" in comparison to the general population (GAP,
1992, p. 5). Estimates of from 5% to 10% suicide rates, and a
lifespan shortened by up to 10 years have been reported (GAP, 1992).
The results are in part due to the lack of optimal care for the
population, and the growing numbers of homeless chronically mentally
ill in major urban centers (Talbott, 1990).
A more useful description of the heterogeneity in schizophrenia
would be the variation in outcome in the late stage of the illness.
Rolland (1994) emphasized that the primary impact of outcome was
the initial expectation of the degree of loss to be experienced by the
family. Using existing long-term studies as a basis for hypotheses,
and the onset and course categories in the typology as variables, a
picture of the late course will begin to emerge that may be used to
provide more accurate prognostic information to the patient and
family. The outcome category would then include the likelihood of
improvement in the late course of the illness.
(3)4 Course - Patterns of Psychotic & Residual
Symptoms: Rolland discussed variables that were implicated in the
adaptation to illness, but that were not included in a separate
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category. Visibility of schizophrenic symptoms is an area that is so
central to the individual and family that it should be Included in any
typology attempting to chart the course of the illness (Marengo,
1 994). Patterns of psychotic and residual symptoms each represent
unique stressors and necessary adaptations that affect the objective
and subjective experience of the illness. Inclusion of this important
distinction will also serve as a valuable research tool when studies are
compared, and as distinctions between schizophrenia subtypes
become more apparent.
(a)g Course - Patterns of Role Functioning: The
patterns of social, work, and self-care role functioning are included in
the diagnosis of schizophrenia, as well as representing important areas
for determining treatment efficacy (Heinrichs et al., 1984; Marengo,
1994). Their independence from symptomatology levels is indicative
of the heterogeneity and complexity of patterns in the course of the
illness. The inclusion of a role-functioning dimension would contribute
valuable information to the long-term course of the illness.
By utilizing the constant, progressive, and relapsing categories,
in combination with the symptom and role-functioning subcategories,
course types can be more systematically and sensitively investigated.
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(a)g Metacharacteristics:
Culture & Beliefs: Rolland stresses the role of the belief
systems of the family in shaping their interpretation of events such as
illness. "Beliefs may be labeled values, culture, religion, world view, or
family paradigm" (Rolland, 1994, p. 125), and are included in the
model as an overarching factor that may empower the family and
provide a sense of competency (Griffith & Slovik, 1990; Patterson,
1989; Rolland, 1987). The belief system also may determine
definitions of normalcy, participation in treatment, and the locus of the
cause of illness (Rolland, 1994).
Degree o f Uncertainty: The degree of uncertainty or
predictability in schizophrenia, a function of the current state of
knowledge, is represented as an additional metacharacteristic that
influences all other factors. There are many aspects of the long-term
course of schizophrenia that are undiscovered, increasing the level of
stress and anxiety for all those affected by the illness. Knowledge of
both the rate of change and the nature of the illness are incomplete,
and the presence of a degree of genetic transmission increases the
level of guilt and blame. But recognition of the limitations in scientific
understanding allows the individual and family to remain open to new
developments, and alert to changing psychosocial demands and
expectations as the illness moves from one phase to another.
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By combining the normal individual and family developmental
cycles (which include age-specific transitions as well as variations in
the levels of family cohesion), with the profound impact of the onset
of schizophrenia (which includes phases of the illness and their
attendant demands), the complexity of the interactive processes can
be visualized (Figure 2).
In addition to the modifications of the illness typology, some
modification of the time phases of the illness is required to make it
consistent with what is currently understood about the illness.
(b) Time phases: The three categories in Rolland's model
are the crisis, chronic, and terminal. The phases are very compatible
with researchers descriptions of the eras or "epochs" of schizophrenia
over time (Carpenter & Kirkpatrick, 1988). The crisis (early) phase
includes both the beginning of psychotic symptoms and early
treatment, and the prodromal period that precedes symptomatology.
The mid-phase (chronic course) includes periods of active psychosis
and nonpsychotic periods between episodes.
The change would be made in the terminal phase, which should
be relabeled the "late phase". The late phase (third epoch) refers to
late course and outcome, when some patients improve and others
stabilize or deteriorate (Carpenter et al., 1988; Wynne, 1988).
Contrary to earlier conceptions, many patients with schizophrenia
81
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C M
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show sustained and substantial improvement in psychopathology late
in the course of illness (Lin & Kleinman, 1988; Lamb, 1987; GAP,
1992; Belitsky & McGlashan, 1993).
The changing needs of the family over the life span must be
considered in a developmental context, as the family's interaction
patterns may differentially affect the schizophrenic individual at
different stages. Family reorganization efforts in the acute period of
schizophrenia are different than in the chronic phase (Wynne, 1986).
Little is known about the individual and family affected by
schizophrenia in mid-phase, and some writers theorize that it may be
the most opportune period for intervention, rather than a time for less
intensive efforts (GAP, 1992). The results of a review of long term
follow-up studies indicate that the virulent effects of the illness
subside to a great degree in middle-age, and reach a plateau or even
gradual improvement with time (McGlashan & Carpenter, 1988).
By including the phase of illness as an important variable in the
model (Glynn, 1992) , researchers will begin to build knowledge about
the years beyond early adulthood, which may comprise the majority of
a person's life with schizophrenia.
Rolland hypothesized that the impact of a chronic illness would
have a differential impact on the fluctuating levels of family
involvement based on the phase of the illness. The impact was
83
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expected to be greatest at those times when the family was moving in
a centrifugal mode. The opposing force of the illness would force the
family into increased cohesion. The presence of a chronic illness
would lead to increased levels of family cohesion, with the onset
triggering a transition for the family much like the birth of a child
(Rolland, 1994).
The phases were conceptualized as the illness life cycle
(Rolland, 1994). The crisis phase, with its high psychosocial
demands, was analagous to childhood. The illness promoted a
tendency toward increased family cohesion (Rolland, 1994). The
principle task of the chronic or mid phase of illness was to move
toward autonomy within the constraints of the illness. This phase
looked much like the less cohesive phase of adolescence and
adulthood, with lower levels of family involvement (Rolland, 1994). In
the terminal (late stage in the adapted model), he predicted that
increased psychosocial demands of the illness would again create an
increased pull toward the family.
These hypothesized relationships in the level of family cohesion
based on phase of illness can be tested to determine the changing
patterns of family cohesion for a sample of chronically mentally ill
adults.
8 4
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Finally, the adapted model would predict an interaction based on
an individual's age and the phase of illness. Rolland predicted that the
centripetal impact of the illness would be greatest during periods of
normal family disengagement; the most extreme cohesion forced upon
the family at a time when the individual was developmentally prepared
to experience lesser cohesion. These forces are predicted to intersect,
given that the normative age predictions are supported. If no
interaction is present, the data provide vital groundwork for further
model development, and further empirical testing using the typology.
In summary, the adapted model of Rolland's conceptualization
of chronic illness may be examined with the following categories of
hypotheses: 1- age-linked fluctuations in family contact, based on
normative predictions; 2- phase of illness fluctuations, based on the
presence of schizophrenia; 3- an interaction of age and phase, based
on the opposing forces of normative fluctuations over the life span and
the centripetal forces of the illness.
(c) A Familv Example: "Jim " was first hospitalized at
age 18 (early onset) during his freshman year in college. He had
displayed prodromal symptoms for several years, but during finals
week, his increasingly bizarre behavior alarmed his roommates. Jim
left college and moved back to the family home. The first few years
of his illness were marked by periods of severe symptomatology and
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rehospitalization, followed by relatively symptom-free periods
(relapsing). This resulted in continual readjustment by Jim and his
family.
Jim's illness occurred during his early adult transition period. He
was unable to accomplish the normal developmental tasks of the era,
which include developing a plan for an independent life apart from his
family. His inability to complete his schooling or maintain a stable
work record, and the disruption of normal peer relationships and dating
were the result of the repeated hospitalizations and symptomatic
behaviors (psychosocial impairment). The family was in the
developmental transitional phase of moving from living with
adolescents to launching children and moving on (centrifugal period).
The mother and father had been experiencing marital difficulties for the
previous few years, and the mother had returned to school to finish
her education. The onset of the illness caused her to abandon her
plans and take on the major caretaking duties for Jim. Her need to
keep Jim safe and provide for his needs conflicted with his normal
developmental need for autonomy. Jim's parents knew little about
schizophrenia, but they believed that the family was often blamed
(family beliefs), and so rejected attempts to become involved in his
treatment at the hospital. The father, rejecting prior plans to slow
down his work schedule in a move toward retirement, instead
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increased his work load to sustain the family through the financial
burdens that the illness imposed.
The illness imposed a transition period upon the family,
resulting in increased family cohesion, and strengthened external
boundaries between the family and the outside world (centripetal
phase). The preexisting problems in the marital couple, inflexibility of
gender roles, and the degree to which family members abandoned their
developmental goals indicated that this family would have a
particularly difficult time in dealing with the relapsing illness. The
state of preparedness that the family had to maintain kept the family
in the centripetal mode even when symptoms abated. In addition, the
illness occurred at a time when normal family development was
headed toward decreased levels of cohesion. The contrast between
the normal developmental trajectory and the opposing force of the
illness made the addition of the illness more stressful during the initial
crisis phase. The life cycle skew of the illness occurring during a
transition period was another stress factor, as normal developmental
tasks of the next phase had to be considered in light of the illness.
Jim was in the transition to young adulthood, the family was in
transition from living with teenagers to launching young adults, and
the illness was at the crisis phase, imposing a centripetal transition.
The clash of the transitions produced stress.
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As Jim entered the early adult phase of his development and
remained at home, the normal developmental tasks of exploring and
developing capability for intimate relationships were not accomplished
(early adult phase). His father was increasingly inpatient with the
residual symptoms of passivity and apathy, as well as the recurring
psychotic symptoms. The mother, who had initially envisioned her
caretaking as temporary, assumed a permanent role in Jim's care, as
well as responsibility for his well-being. Jim and his mother became a
cross-generational coalition that excluded the father. The rigidity of
gender roles increased the level of family stress, and the prior level of
marital discord increased. Extended family gatherings became more
stressful, and the father's increased work load and the mother's
dedication to Jim's care resulted in a decreased social network.
In the chronic phase, the family had adapted to living with a
long term disability, but they had not proceeded developmentally. The
normal developmental pattern of lower family cohesion was thrown off
cycle by the crisis phase requiring higher family cohesion. The family
remained at that level after it served its adaptive function.
As Jim passed into the chronic phase in his late 20s and early
30s, the parents finally agreed to participate in behavior family
therapy. The psychoeducational component increased their
understanding of the illness, and the involvement of all family
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members in a problem-solving approach to daily living which focused
on individual and family strengths began to lessen the impact of the
illness. Jim was able to complete a successful transition to
independent living while maintaining contact with the family. The
mother decided to pursue her educational goals, and the father
completed a partial retirement. The family therapy helped the marital
couple to address some of their long-standing issues, which reduced
the level of tension in the home.
A community support program offered opportunities for Jim to
engage with peers, as well as gain social and vocational skills at mid
phase. Due to the type of onset that he experienced, it could be
predicted that after a number of years of illness, the chronic phase
would probably result in fewer positive symptoms and fewer
exacerbations. The transition to the chronic phase permitted some
resumption of the family's developmental trajectories.
(d) Summarv: Clinical and research needs indicate the
necessity of more accurate descriptions of the heterogeneous nature
of the course of schizophrenia, in addition to an integrated theoretical
approach that acknowledges the importance of the family. The Family
Systems-lllness Model as adapted for schizophrenia offers a method
for the conceptualization of the complex interaction of the individual,
family, and illness developmental paths over the life cycle. The
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typology of illness includes the categories that are hypothesized to be
most relevant to understanding the psychosocial aspects of
schizophrenia, as well as providing a basis for cross-study
comparisons. The time phases represent the developmental tasks and
psychosocial demands of the illness imposed on the individual and
family over time. Lifecycle concepts of the individual and family
developmental processes highlight the periods of increased
vulnerability to stress.
The model provides a basis for assessment and a guide to
intervention. The categories of the typology and the changing
demands of the illness focus the clinician's questioning of the family in
the early phase, clarifying treatment planning and goal-setting. The
structure also is valuable to the individual and family who may be
unfamiliar with the mental health system, and may be overwhelmed by
the enormous, shapeless potential impact on the family. Describing
the normative developmental landmarks and tasks of the individual and
family, combined with the additional tasks related to the development
of the illness, allows for preparation for future transitions. The
process also helps the family to develop a relationship with the
clinician based on mutual understanding and cooperation.
In addition to the early stage, the typology and time phases are
useful in the middle and late phases. Understanding the illness
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trajectory retrospectively will allow predictions to be formulated, based
on the individual's unique experiences of schizophrenia. Little is
known about the interaction patterns between the family and the
schizophrenic member after early adulthood, and use of the typology,
combined with continued gathering of family data as to their
developmental stage, would facilitate the inclusion of the family in
treatment planning in middle and late phases. Exploration of the
changing developmental needs and demands of the illness, combined
with those of the individual and family, may lead to an increase in
interventions at times beyond the crisis stage. Periodic réévaluations
to assess strengths, weaknesses, and approaching transitions would
enable the clinician to address the life-long coping process in more
manageable segments.
The model allows a stance to be assumed by researchers,
clinicians, and family members that considers normal patterns of
response to schizophrenia across the lifespan. A non-blaming stance
toward the family is essential so that their burdens, challenges, and
contributions can be acknowledged, and their strengths channeled into
a cooperative effort. Application of the model will facilitate improved
communication both within the family system and between clinicians
and researchers as the family's unique assets and needs are identified.
Empirical studies will allow hypothesized relationships and predictions
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to be tested, resulting in more accurate and sensitive view of systemic
change over time.
The Family Systems-lllness Model (Rolland, 1994) as adapted
for schizophrenia (Mathiesen, manuscript in preparation) offers a
method for the conceptualization of the complex interaction of the
individual, family, and illness developmental paths over the life cycle.
The model consists of a psychosocial typology of schizophrenia and
time phases of the illness. The typology of illness includes the
categories that are hypothesized to be the most relevant to
understanding the psychosocial aspects of schizophrenia, as well as
providing a basis for cross-study comparisons. The time phases
represent the developmental tasks and psychosocial demands of the
illness imposed on the individual and family over time. The typology
and time phases combined allow the illness to be seen as "an
additional member of the patient, family, therapist system with its
own identity (course, onset, etc.) and life course (phases)" (Rolland,
1994). Lifecycle concepts of the individual and family processes
highlight the periods of increased vulnerability to stress (Rolland,
1994).
By combining the age-linked developmental changes for the
individual with the fluctuating levels of family interaction over the life
span, and using the typology of illness to further pinpoint unique
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variation, the model as adapted for schizophrenia provides a heuristic
for conceptualizing a multitude of complex interactions without
oversimplification. The model will be useful both as an assessment
tool and a guide to Intervention.
The model testing goal of the project involved the adaptation of
Rolland's Family Systems/Illness model (1994) that conceptualizes
individual and family functioning over the lifespan to be influenced by
the presence of a chronic physical illness in one member. The model
will enable clinicians and researchers to more effectively understand
and treat the family, as well as to utilize the powerful influence of the
family in rehabilitative services.
9 3
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III. DESIGN AND METHODOLOGY
A. AIMS
The specific aims of this research project were:
Aim 1(a): To describe prospective change in the quantity and
quality of parental involvement over a three-year period in an urban,
ethnically diverse sample of community-based individuals diagnosed
with schizophrenia.
Question 1(a): How does the quantity and quality of parental
involvement change over time?
Aim 1 (b): To explore possible systematic differences in
temporal patterns of parental involvement based on family residency.
Question 1 (b): Is the family residency of the subject associated
with differences in the quantity and quality of parental involvement
over time?
Aim 2: To explore possible systematic differences in temporal
patterns of parental involvement based on: (a) participation in
intensive, community-based rehabilitative treatment; (b) gender;
(c) racial category; or (d) age of onset.
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Hypothesis 2 (a): There will be differences in the quantity and
quality of parental involvement over time based on participation in
intensive vs. non-intensive rehabilitative treatment.
Hypothesis 2 (bl: There will be differences in the quantity and
quality of parental involvement over time based on gender.
Hypothesis 2 (c): There will be differences in the quantity and
quality of parental involvement over time based on racial category.
Hypothesis 2 (d): There will be differences in the quantity and
quality of parental involvement over time based on age of onset.
Aim 3 : To test hypotheses based on psychosocial
developmental models of individual, family, and illness processes.
Hypotheses to be tested will help to determine if age, phase of illness,
or the interaction of age and phase of illness are predictive of levels of
parental contact over time.
Question 3 (a): Based on Levinson's normative age categories,
is age significant in predicting levels of parental contact in community-
based individuals diagnosed with schizophrenia?
Hypothesis 3(a)- , : The normative model predicts that
those individuals aged 17-27 (which includes the Early Adult
Transition up to the beginning of the "Age 30 Transition" period) will
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show: negative linear, and/or positive quadratic change In parental
contact.
Hypothesis 3(a)? : Those Individuals aged 28-39 (which
Includes the "Age 30 Transition" up to the beginning of the "Midllfe
Transition" period) will show: positive linear, and/or negative
quadratic change In parental contact.
Hypothesis 3(a), : Those Individuals aged 40-59 (which
Includes the "Midllfe Transition" period up to the beginning of the
"Late Adult Transition") will show: negative linear, and/or positive
quadratic form of change In parental contact.
Question 3 (b): Based on Rolland's model of chronic Illness, Is
phase of Illness significant In predicting levels of parental contact for
community-based Individuals diagnosed with schizophrenia?
Hypothesis 3(bL, : Those subjects In the early phase of
Illness at baseline (length of Illness 5 years or less) will show: positive
linear, and/or negative quadratic change over time In parental contact.
Hypothesis 3(b), : Those subjects In the midphase of
Illness at baseline (length of Illness 6-15 years) will show: negative
linear and/or positive quadratic change over time In parental contact.
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Hypothesis 3(b)., : Those subjects in the late phase of
illness at baseline (more than 15 years) will show: positive linear
and/or negative quadratic change over time in parental contact.
Hypothesis 3 (c): Based on the current adaptation of
Rolland's model, there will be a phase of illness X age-linked
developmental stage interaction predictive of parental contact for
community-based individuals diagnosed with schizophrenia.
B. DESIGN AND SAMPLE
The study is a secondary analysis of data from NIMH Grant
MH-43640, principal investigator Dr. John Brekke. Information
regarding the original study design, sample, and measurement
instruments are briefly summarized , followed by the analysis for the
current study.
Study design: The parent study was a longitudinal quasi-
experimental design that compared treatment outcomes of three
community care models over three years (1989-1994): two high
service intensity community support programs (CSPs) and a low
service intensity group (residential board and care/case management).
The two intensive programs (Portals and Community Living Program or
CLP) were collapsed and compared to the nonintensive case
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management group. Data were collected on all subjects at baseline and
at 6-month Intervals for a total of three years.
Sample: The sample (N = 172) was drawn from consecutive
admissions to the two model CSPs In Los Angeles County and
subjects selected from board and care residences that were monitored
by the case management system.
Table 1 presents the demographic characteristics of the sample,
as well as the drop-out rates from treatment and from the study.
The final sample for the longitudinal analysis Included 172 subjects at
baseline: 127 males (73.8%), and 45 females (26.2%). The subjects
ranged In age from 19 to 55 years of age (mean = 33 years of age;
SD = 7.3): 43 subjects (25%) were 19-27 years of age, 99 (57.6%)
were aged 28-39, and 30 (17.4%) were aged 40-55.
All subjects Included In the study had a diagnosis of
schizophrenia or schizoaffective disorder according to the Research
Diagnostic Criteria (RDC). In a two-phase process, an admitting
clinician first reviewed chart records and Interview data at the program
site. Those subjects who passed the Initial screen were finally
diagnosed using the Schedule for Affective Disorders and
Schizophrenia (SADS; Endlcott & Spltzer, 1978) In a face-to-face
Interview process using structured Interview data and clinical records.
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TABLE 1
Demographic Characteristics of Sample (N= 172) and Attrition Rates
Variable N % of N Mean SD
TREATMENT GROUPS
Portals 70 40.7
C LP 34 19.8
Case Management 68 39.5
GENDER:
Males 127 73.8
Females 45 26.2
RACE:
Caucasian 87 50.6
African American 50 29.1
Latino 27 15.7
Asian & Other 8 4.6
AGE:
33.23 7.26
19-27 43 25.0
28-39 99 57.6
40-55 30 17.4
PHASE:
Early (0-5 yrs) 41 23.8
Mid (6-1 5 yrs) 83 48.3
Late (16+ yrs) 4 8 27.9
AGE OF ONSET:
22.1 1 6 .4 0
10 & Under 4
2.3
11-15 16 9.3
16-20 53 30.8
21 - 25 62 36.1
26 - 30 24
13.9
Over 30 13 7.6
Studv Attrition:
Treatment Exit Rates:
Portals CLP
6 m o 19% 2 1 %
6 & 12 mo 12%
12 m o 45% 56%
18 mo 13%
18 m o 76% 65%
24 mo 17%
24 m o 81% 71%
30 mo 21%
30 m o 90% 74%
36 mo 28%
36 mo 91 % 79%
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The diagnostician was a licensed, doctorate-level clinician trained in
the use of the SADS.
The numbers of subjects in the programs in the study were as
follows: Portals- 70; CLP- 34; and Case Management- 68. The ethnic
composition of the sample was 87 Caucasians (50.6%), 50 African-
Americans (29.1%), 27 Latinos (15.7%), and 8 Asian or Other
(4.6%). At baseline, the average length of illness was 11.2 years
(SD = 7), with 39 (23.4%) at 5 years or less, 80 (47.9%) at 6
through 15 years, and 47 (25.7%) with 16 or more years of illness.
The mean BPRS score was 43.8 (SD = 13.4), and none of the subjects
was hospitalized at time of study entry. Defined as the age of first
psychiatric hospitalization, the mean age of onset was 22.11
(SD = 6.40), and ranged from age 8 to age 51.
To address the issue of non-equivalence of the groups to be
compared, ANOVA procedures were used to determine any pretest
differences. Subsequent analysis found no significant differences
between the groups at pretest (Brekke et al., 1997).
Because portions of the present analysis involve subsamples
based on the subjects' living situation, it is important to note the size
of the groups over the three year period. The size of the group that
never lived with family over three years was 140 (81.4%), while 32
(18.6%) moved between parental home and nonfamilial residence.
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There were two types of attrition in the study: those who
dropped out of the study, and those who exited the treatment
programs but continued to participate in data collection. The attrition
rates for both study drop-outs and treatment drop-outs at each of the
time points are reported in Table 1, and no significant differences in
either type of attrition occurred among programs. Subjects who
dropped out of treatment were followed for the entire study period on
all measures.
C. SOURCES OF DATA AND INSTRUMENTS
1. Interviews
(a) The Demographic Information Form (DIFI was the
source of data for socio-demographic characteristics and their
psychiatric history. Data were gathered in a semi-structured interview
within two months after entry into the study. Client variables that
pertain to the present study include: age, phase of illness, gender,
racial category, and whether or not the subject lived with family.
Psychiatric History is a composite score based on information
collected for each person gathered by the Los Angeles County
Department of Mental Health Automated Information System (AIS).
The score is comprised of the number and length of inpatient
admissions, number of involuntary admissions, number of out-patient
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service units, first AÏS episode and total subsequent units of service,
last inpatient admission, and lowest and highest GAS scores.
(b) The Community Adjustment Form (CAFl: The CAP
(Test et al., 1991) is an instrument which has been in wide use over
15 years, and has been refined and tested as to its psychometric
properties by other researchers. The CAP is a semi-structured
interview with the patient which focuses on objective behaviors or
events over specific time periods. The three major areas of concern
are the patient's psychosocial functioning, treatment received, and
social/environmental factors. Social and environmental factors include
the various forms and amounts of contact with family, social support,
income and other economic support. Patient functioning variables
include residential setting, time spent in institutions, employment,
social relations, activities of daily living, drug and alcohol use, and
involvement with the criminal justice system. Treatment variables
include medication compliance, participation in vocational and social
rehabilitation programs and activities, and contacts with mental health
providers.
Face-to-face interviews using the CAP were conducted by
trained research staff at baseline, and at 6 ,1 2 ,1 8 , 24, 30, and 36
months after the baseline measurement. The CAP requires training for
the interviewer. The details of the training of interviewers is reported
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elsewhere (Brekke et al, 1993) but interrater reliability (kappa or
intraclass correlation coefficient [ICC]) ranged from 0.88 to 1.0. 3oth
the choice of instruments and the training were designed to minimize
subjective interviewer ratings and thus minimize bias.
Client variables from the CAP pertaining to the quantity and
quality of parental involvement in the present study include; the
amount of face-to-face or phone contact with parents, and the quality
of the subject's family network relationships.
(c ) SASH: The subject's level of independence from the
family was measured by the Social Adjustment Scale II (Western
Psychiatric Institute, 1974). An intraclass correlation coefficient (ICC)
of 0.88 was obtained. SASH was used in a previous paper by the
principal investigator to examine differences in psychosocial
functioning based on residential status and maintenance of contact
with families (Brekke & Mathiesen, 1995).
2. Self-Reoort Instrument
(a) The Satisfaction With Life Scale (SWL): The SWL
Scale (Stein & Test, 1980) is a 21-item self-report scale which
measures patient satisfaction in work, living situation, number of
friends, and with family relationships. The satisfaction with family
relationships items were used for the study. The SWL has
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demonstrated the ability to distinguish between first year graduate
students and recent CSP admissions, and Brekke et al. (1993) reported
an alpha of 0.87. It has also been used in prior studies (Marx, Test &
Stein, 1973; Stein & Test, 1980; Test & Stein, 1978), and was
adapted from the work of Fairweather et al. (1969). Subjects
completed the scale at the end of the face-to-face interview at each
time period.
D. OPERATIONALIZATION OF VARIABLES
1. Quantity of Parental Contact: The Quantity of Parental
Contact was defined in this study as the frequency of face-to-face or
telephone contact between the subject and parents in a two month
period. The amount of contact with parents was coded on the OAF
only for those subjects who were not living with their families.
2. Quality of Parental Involvement: The Quality of Parental
Involvement was defined by three different measures. (1) The
'Satisfaction with Family Relationships' item from the Satisfaction
with Life Scale was used as one measure of the character of parental
interaction. (2) An item addressing the level of independence from
family was used from the Social Adjustment Scale. Satisfaction and
independence were measured on a scale of 0 to 4, with high scores
indicating more satisfaction or more independence. (3) The quality of
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the family network relationships was measured by the Family Network
Relationships item of the Role Functioning Scale (Goodman, Sewell,
Cooley et al., 1993). Scores range from 0 to 7, with higher scores
indicating more positive, consistent, and reciprocal relationships. The
three Quality of Parental Involvement variables were collected on
subjects whether they lived with their families or not.
The data permit the examination of two distinct subsamples:
the group of subjects who never lived with their families at any time
during the three year study (the "No Family Living" or NFL subsample),
and the group who moved between family and community residency
for some period of time (the "Some Family Living" or SFL subsample).
This is an important distinction, as the two groups may be very
different from each other in relation to family variables.
E. ANALYSIS OF DATA
It has been argued by theorists and statisticians that new
methods for the conceptualization and measurement of quantitative
change are needed to answer the kinds of questions about human
behavior that are of greatest interest (Rogosa, 1988; Willett, 1988;
Collins, 1991). A potential solution to many of the identified
inadequacies in conceptualization, measurement, and design that have
plagued research on individual change is the growth curve approach
105
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(Rogosa, Brand & Zimowski, 1982; Rogosa & Willett, 1985; Willett,
1988), This approach permits examination of individual change over
time, as well as systematic differences in the patterns of change based
on covariates, such as service type or client characteristics.
Most previous research on change has not explicitly addressed a
model of individual growth, the appropriate foundation for models of
change (Rogosa et al., 1982; Bryk & Raudenbush, 1987). A priori
theories of individual course must be developed so that our inquiry,
methods, instruments and analysis will be sensitive to individual
variation. Without theory to guide expectations of the form and
magnitude of change, interpretation of results will be flawed (Willett,
1989; Collins, 1991).
The traditional approaches to the analysis of longitudinal data
have analyzed change at the expense of seeing change as
characteristic of the individual (Gibbons et al., 1993). Withln-group,
individual variability is treated as error. Repeated measures analysis
does not reveal information about the range of responses in the
sample, but only estimates an average response over time.
Growth Curve Approach: Growth curve, or change curve
analysis occurs in two linked phases. First, individual change is
modeled across time for each subject. The result is a growth curve; a
within-subject summary of the growth of each person over time,
106
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represented by initial status (intercept), the rate of change (slope), and
the type of change (linear, quadratic, cubic, etc.). Second, the
presence of systematic differences in the rate and type of change
based on covariates is examined. The within-subject summaries
provide the basis for the between-subject analysis. Variation in
growth from person to person is related to the effect of selected
background characteristics or covariates. Covariates of change are
studied by developing a model that predicts growth parameters from
subject characteristics. The covariates may be time-invariant (such as
gender or ethnicity), or those that change in relation to the growth
process (such as socio-economic status) (Willett, 1988).
The growth curve or change curve approach has several
advantages over other methods of longitudinal data analysis:
(1) All data points for each subject are used to create change
curves at the individual level. Each person will have an intercept,
slope, and parameter estimates of more complex curves that combine
to accurately describe one person's change over time. This allows for
the heterogeneity in the course of illness on the selected variable to be
examined for each subject. An individual growth model perspective
extends the Aptitude by Treatment Interaction (ATI) approach to the
study of change (Francis et al., 1991). The ability to measure
independent responses to treatment is especially vital in research on
107
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human behavior, where group trends across time are insufficient for
capturing the complex and heterogeneous nature of response to
treatment (Gibbons et al., 1993).
(2) In addition to rich description at the individual level, the
change curve approach allows for hypothesis testing at the group level
with the use of covariates, variables predicted to vary systematically in
relation to the curves (Bryk & Raudenbush, 1992). This is
accomplished by analyzing change curves with hierarchical linear
modeling (HLM; Bryk & Raudenbush, 1992).
The HLM/2L software program (Bryk, et al., 1994) analyzes
data at two levels: (1) at the individual (within-person) level, and (2)
at the group level using covariates. At Level 1, individual parameter
estimates (intercept, linear, and quadratic slopes) are created using a
least-squares regression equation. At Level 2, the Level 1 parameter
estimates (intercept, linear and quadratic slope) are used as dependent
variables in a new equation, and predictors of systematic change
(covariates) become the independent variables. The program
computes between-person curves based on the covariates using
Empirical Bayes estimation. The individual curve parameters are
recomputed with weights that reflect the relative error of each phase,
and the same recomputation then occurs for the between person
1 0 8
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model using the new weighted parameters. The resulting parameter
estimates will be optimal estimates of the population parameters.
(3) HLM is also able to effectively deal with the problem of
missing data, a common problem in longitudinal studies. No
assumptions of equal spacing of observations for each subject or an
equal number of time points are required (Gibbons, et al., 1993).
Estimation of individual curves (person-specific effects) is based on all
available information for each subject, plus information from all other
individuals in the sample. Subjects with more data points are weighted
most heavily by their own data. Those with less information about
person-specific effects are weighted more heavily by the group means,
capitalizing on existing strengths in the data (Bryk et al., 1 987).
In the current study, time, as a "predictor" of the linear and
quadratic parameter estimates of Level 1, was transformed by using
orthogonal polynomials. Each set of polynomials, found in table form
(Kirk, 1995), represents a specific curve based on the number of data
points in the study. The transformation is done so that the predictors
(time and time squared) are uncorrelated and centered at "0".
One of the problems of using orthogonal polynomials to
determine curve type is that is renders the intercept term, an important
and meaningful piece of the model, uninterpretable because "0" is
always at a different point. This drawback will be remedied by adding
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a different constant to each set of values (Brekke, Long, Nesbitt &
Sobei, 1997). The addition of the constant sets all intercepts to "0",
allowing for comparisons of intercepts based on curve type. This
renders the intercept term interpretable as the initial status.
Summarv: The growth or change curve approach specifically
focuses on modeling individual patterns of growth, in addition to the
examination of between group differences and correlates of change.
The emphasis on theoretical models of change is an important
component to the approach, which will allow more sophisticated and
targeted research hypotheses to be generated. The procedure can
accommodate missing data points, as well as varying data points, and
all data for each subject is utilized to accurately portray the variation in
individual patterns of change that is obscured by traditional analysis
and treated as error. Either varying or constant covariates (subject or
treatment variables that may be associated with outcome), can be
included in the model, and variance/covariance structures can assume
fairly general forms, instead of the traditional assumptions of
compound symmetry. Finally, a growth curve approach provides both
a conceptual foundation and a statistical procedure for the assessment
of change which offers solutions to problems which have plagued
traditional methods.
1 1 0
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Well-developed theories of individual change over time may be
advanced by the application of a concept of continuous rather than
incremental change, by maintaining a focus on the individual as the
level of study, and by modeling each person's differences to
understand correlates of change across groups.
The complexity and lack of empirical testing of the Family
Systems/Illness model, combined with the large number of variables
that could be explored, requires that this initial investigation provide
the groundwork necessary for future testing. Therefore, the first part
of the analysis will be a description of the levels of parental
involvement for the complete sample, as well as their changing
patterns over time. Next is hypothesis testing of service type and
client characteristics, followed by hypothesis testing of the
psychosocial models. There are two types of analyses in the proposed
study: description and hypothesis testing.
1. Descriptive Analvsis
Question 1(a): How does the quantity and quality of
parental involvement change over time?
The descriptive goals include patterns of change over time in
both the quantity and quality of parental involvement. The "quantity"
variable will be the quantity of parental contacts over the past two
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months, whether face-to-face or by phone. Concerning the "quality" of
involvement, three variables will be analyzed: 1- the subject's degree
of satisfaction with the family relationships; 2- the quality of the
family network relationships; and 3- the degree of independence from
the family.
First, the raw scores for all individuals on each of the four
dependent variables (quantity of parental contact, satisfaction with
family relationships, level of independence from family, and the quality
of family network relationships) will be plotted for the entire sample.
The next step will be to create individual parameter estimates using
HLM/2L (Bryk & Raudenbush, 1994) for each subject based on both
the quantity and quality of parental involvement over time.
A total of three graphs will be presented for each of the four
dependent variables: (1) the raw scores for all individuals plotted over
time; (2) the individual HLM curves for the entire sample; and (3) the
mean HLM curve for the entire sample.
Question 1(b): Is the family residency of the subject
associated with differences in the quantity and quality of parental
involvement over time?
As discussed in the previous section, it is important to gather
information regarding those individuals who do not reside with their
families. This portion of the analysis used the presence (coded 1 ) or
112
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absence (coded 0) of any days of family residency as a covariate for
each of the four dependent variables. The resulting group sizes were;
those individuals who did not live with their parental family (N = 140),
and those who lived with their family at some point during the study
period (N = 32).
2. Hvpothesis Testing of Service Tvoe & Client Characteristics
Level 2 of HLM allows systematic differences based on
covariates to be explored. The parameter estimates of the quantity and
quality of parental involvement from the individual level (Level 1 ) will
serve as dependent variables in regression equations at Level 2. These
exploratory hypotheses will determine if intensity of treatment and
client characteristics of gender, racial category, and age of onset are
systematically related to the quantity and quality of parental
involvement for the entire sample.
In addition, these data permit important examinations of two
potentially different subsamples: (1) those who moved between the
parental home and nonfamilial residence (the SFL subsample), and (2)
those who did not reside with family (the NFL subsample). The same
covariate analysis will be performed separately on each of the two
subsamples, as well as on the entire sample. Mean HLM curves will
be constructed based on the presence of systematic differences in the
covariates.
113
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Prior studies using the current sample have shown that Portals
and CLP are more intensive in terms of amount of staff time spent
with clients than CM (Brekke & Test, 1992). Portals and CLP
averaged 20 hours of staff contact in the first 3 months, and dropped
to 6 hours every three months at the 12-month point. CM averaged
one hour of staff contract every three months. These results clearly
establish the difference in intensity between case management and the
two CSP programs. Significant differences were reported during the
first 12 months, as well as over the entire study duration (Brekke et
al., 1997).
Due to attrition in the treatment programs, systematic
treatment differences will be analyzed in two ways. First, intensive
treatment will be used as a covariate using all subjects who were in
treatment at baseline. Next, intensive treatment will be charted over
time for only those subjects in treatment at each time point. This
method was used successfully to examine treatment effects with HLM
in a prior study (Brekke et al., 1997).
For the purposes of this study, the two intensive rehabilitation
programs will be combined into one, and compared with the non-
intensive case management group. The type of treatment group will
be used as a covariate to determine the presence of systematic
differences in parental involvement.
114
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Hypothesis 2(a): There will be differences in the quantity
and quality of parental involvement over time based on participation in
intensive vs. non-intensive rehabilitative treatment.
Hypothesis 2(bl: There will be differences in the quantity
and quality of parental involvement over time based on gender.
Hvpothesis 2(c ): There will be differences in the quantity
and quality of parental involvement over time based on racial category.
Hvpothesis 2(d): There will be differences in the quantity
and quality of parental involvement over time based on age of onset.
3. Hvpothesis Testing of Psychosocial Models
3a. Hvpothesis Testing of Aoe: Levinson's Normative
Model: The adapted model posits that schizophrenia imposes a
centripetal force or "press" on both individual and family in terms of
the family interaction patterns, causing an increased level of family
contact that may disrupt developmental patterns. One of the primary
concepts of the model is based is the presence of age-linked
differences in normative family interaction patterns at different phases
of life (Levinson, 1986; Combrinck-Graham, 1985).
One important aspect of the normative model to be tested,
then, is to determine if schizophrenia impacts normal developmental
patterns of parental contact over time: that is, are the fluctuations in
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the amount of parental contact in normal family development present
when one family member is diagnosed with schizophrenia? If the
patterns are not as predicted by normal family development, what is
the nature of the change over time? As this portion of the hypothesis
testing is based on a normative model, and the sample consists of
those affected by schizophrenia, the expectation is that the null will be
retained. This would mean, for this sample, normative age-linked
fluctuations in parental contact were not present.
The rationale for the age categories is based on Levinson's
(1978; 1985) work, which states that the transition period is a time of
reappraisal and life structure change for the next developmental
period. Therefore, the transition period is included in the
developmental course which follows the rethinking and alteration of
life course.
The rationale for the fluctuation in levels of family involvement
is based on Combrinck-Graham's (1985) work, which proposes three
periods of the family life cycle. Each family developmental cycle is
marked by alternating levels of high cohesion and low cohesion, which
can then be linked to the individual's developmental stage (Rolland,
1994).
The hypotheses based on these normative models predict that a
linear or possibly accelerated linear curve will be present for each age
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group tested. Therefore, both linear and quadratic coefficients will be
tested using the HLM procedure.
Question 3(a): Based on Levinson's normative age
categories, is age significant in predicting levels of parental contact in
community-based individuals diagnosed with schizophrenia?
Hvpothesis 3(a), : The normative model predicts
that those individuals aged 17-27 (which includes the Early Adult
Transition up to the beginning of the "Age 30 Transition" period) will
show: negative linear, and/or positive quadratic change in parental
contact.
Hvpothesis 3(a); : Those individuals aged 28-39
(which includes the "Age 30 Transition" up to the beginning of the
"Midlife Transition" period) will show: positive linear, and/or negative
quadratic change in parental contact.
Hvpothesis 3(a)^ : Those individuals aged 40-59
(which includes the "Midlife Transition" period up to the beginning of
the "Late Adult Transition") will show: negative linear, and/or positive
quadratic form of change in parental contact.
1 1 7
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3 b. Hypothesis Testing of Phase of Illness: Rolland's
Family Svstems/lllness Model: Rolland (1994) conceptualized the
phases of illness as akin to the phases of the indiyidual and family life
cycle. The impact of schizophrenia is hypothesized to be greatest at
those normal developmental transitions that are characterized by a
move away from the family (centrifugal periods).
The crisis phase of a chronic illness, with increased
psychosocial demands on the individual and family, is analogous to
childhood. The early phase of the illness would result in a tendency
toward increased family cohesion. The chronic (or mid) phase of the
illness consists primarily of the psychosocial task of development of
autonomy within the constraints of the illness. The illness in mid
phase would result in a tendency toward decreased family cohesion.
The late phase of illness may signal increased psychosocial demands,
and would result in a tendency toward increased family cohesion.
A fundamental aspect of the adapted model to be tested is that
of the differential effect of schizophrenia upon parental interaction
patterns based on the phase of the illness.
1 1 8
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Question 3(b): Based on Holland's model of chronic
illness, is phase of illness significant in predicting the level of parental
contact for community-based individuals diagnosed with
schizophrenia?
Hypothesis BfbK, : Those subjects in the early
phase of illness at baseline (length of illness 5 years or less) will show:
positive linear, and/or negative quadratic change over time in parental
contact.
Hypothesis 3(bin : Those subjects in the midphase
of illness at baseline (length of illness 6-15 years) will show: negative
linear and/or positive quadratic change over time in parental contact.
Hvpothesis 3(b)^ : Those subjects in the late phase
of illness at baseline (more than 15 years) will show: positive linear
and/or negative quadratic change over time in parental contact.
3 c. Hypothesis Testing of Aoe Bv Phase Interaction:
Family Svstems/lllness Model Adapted for Schizophrenia (Mathiesen)
The final hypothesis testing is of the adapted model. The
hypothesis will determine if an interaction of the phase of the illness
and the age-linked developmental stage of the individual that affects
levels of parental contact is present.
1 1 9
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The models of Levinson and Combrinck-Graham predict that
individuals within families will change over time in terms of family
interaction, due to the nature of the psychosocial demands. This is
the effect of age: individuals will vary in the amount of parental
contact based on age. In addition, Rolland posits that when illness
enters the family, the phase of illness is critical to understanding levels
of family involvement. Regardless of the age of the individual, the
phase of illness leaves a unique imprint upon the individual and family.
The early and late phases will require increased family cohesion, while
the mid phase may be more relaxed in terms of the intensity of family
relationships. Therefore, given that the two development aspects of
age and phase may not always be synchronous, an "age X phase"
interaction can be hypothesized. An "age X phase" variable will be
computed and entered as a covariate in the HLM procedure.
Hypothesis 3(c)i : Based on the current adaptation
of Holland's model, there will be a significant phase of illness X age-
linked developmental stage interaction predictive of parental contact
for community-based individuals diagnosed with schizophrenia.
120
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IV: RESULTS
The results of the study are presented in three major groupings.
First, the descriptive analysis will be presented. This section
represents the prospective change in the quantity and quality of
parental involvement over time. The second set of analyses assesses
group differences in quality and quantity of parental involvement based
on type of treatment and client characteristics of gender, racial
category, and age of onset. The final portion concerns the initial
testing of the developmental models of family contact.
A. DESCRIPTIVE ANALYSIS
Two questions were specifically addressed in the descriptive
analysis. 1 - How does the quantity and quality of parental
involvement change over time ? 2- Is the family residency of the
subject associated with differences in the quantity and quality of
parental involvement over time?
Bryk and Raudenbush (1987; 1992) emphasize the need to begin
the analysis with an inspection of the individual raw scores to gain a
sense of the general types of change present. They also emphasize
the need to examine individual change trajectories as well as the mean
trajectories for the entire sample, as the mean curve may be very
different from the individual curves. Therefore, raw scores, as well as
121
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individual and mean HLM change trajectories will be described to
address the first question.
1. Question 1(a): How does the quantity and quality of
parental involvement change over time?
The analyses regarding Question 1 will be presented in the
following order: 1 - the means and standard deviations of the raw
scores; 2- the means of the estimated parameters from the HLM
analysis; 3- graphs of each dependent variable in terms of the
individual raw scores over time, the individual HLM graphs, and the
mean HLM graphs.
The frequency and pattern of family involvement for those with
chronic mental illness and living in the community has not been
previously examined. The raw scores are very meaningful in terms of
mapping the changing intensity of family interactions.
Table 2 displays the means and standard deviations of the raw
scores at each time point for the dependent variables. The four
dependent variables are: 1 -quantity of parental contact (the total of
face-to-face and phone contact initiated by both subject and parent in
the prior two months); 2-quality of the family network relationships; 3-
level of satisfaction with family relationships; and 4-level of
independence from family.
1 2 2
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Table 2
Mean Raw Scores At Each Time Point (N = 172)
Variable
Quantity of
Parental Contact
Time Point
1
2
3
4
5
6
7
Mean Score
13.304
12.727
20.265
17.205
18.575
18.887
13.079
SD
18.879
16.462
32.346
23.762
27.496
25.912
17.139
Quality of
Parental Inyolyement
1 -Quality of Family
Network Relationships
1
2
3
4
5
6
7
3.163
3.262
3.536
3.568
3.458
3.252
3.203
1.674
1.714
1.762
1.758
1.900
1.799
1.868
2-Satisfaction with
Family Relationships
1
2
3
4
5
6
7
2.133
2.087
2.072
2.059
2.047
2.057
1.972
1.192
1.229
1.202
1.286
1.176
1.189
1.183
3-Level of Independence
from Family
1
2
3
4
5
6
7
2.449
2.755
2.986
2.930
2.867
2.626
2.698
1.320
1.334
1.193
1.292
1.280
1.411
1.360
1 2 3
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Quantity of Parental Contact was the total amount of face-to-
face and phone contacts in the previous two months, whether initiated
by the parent or the subject. Only those subjects who had not resided
with family during the time period in question were coded for parental
contact. Subjects who returned to the family home for any days
during the prior two months were coded as missing and excluded from
the Quantity of Parental Contact analyses.
Table 2 reveals that the mean scores at for Quantity of Parental
Contact ranged from 12.7 contacts at Time 2 to a peak of 20.3 at
Time 3. The lowest mean contact score, which was at the six month
point in the study (Time 2), represents a frequency of 1.6 contacts per
week for the sample. The highest mean contact with parents (at Time
3), represents a rate of 2.5 contacts per week. The standard
deviations indicate the wide variation present in the raw scores. On
average, it appears that this sample of community-based individuals,
maintained a pattern over time of substantial contact with parents
when not residing in the home. The mean scores showed a general
increase until Time 3, and then declined over the rest of the study.
Satisfaction with Family Relationships was measured on a scale
from 0 ("Not satisfied at all") to 4 ("A great deal of satisfaction"). The
mean scores ranged from a low of 1.9 at Time 7 to a high of 2.1 at
baseline (Time 1 ). The mean raw scores indicate that the satisfaction
124
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with the family relationships over time was generally in the middle of
the item's range, but examination of the standard deviations indicates
that the scores were widely dispersed around the mean. The mean
scores were at their highest at Time 1, and continually declined.
Quality of Family Network Relationships was rated from 1 to 7.
A score of 1 represented "severely deviant behaviors within the family
network, or no contact with any family". A score of 4 represented
"marginal functioning with family network, limited contact which
varies in quality, and fairly equal reciprocity". The highest score of 7
is characterized by "positive relationships with family, with assertive
contributions to relationships, which are consistent and reciprocal with
several family members". The mean scores which ranged from 3.2 at
baseline to a high of 3.6 at Time 4.
The mean ratings of the quality of family network relationships
changed over time, and scores showed a great deal of variation around
the mean. The means at all time points were below the mid-point of
4, a rating which is described above. But all means were above a
rating of 3, characterized by limited interpersonal relationships, with
some reciprocity and very limited contact (less than once a month).
This sample, on the average, sustained relationships with family
members over time which remained slightly below the mid point on the
1 2 5
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scale. Mean scores increased over time until they peaked at Time 3
and 4, and then declined for the rest of the study time points.
The final dependent variable in Table 2 (Level of Independence
From Family) is rated from 0 to 4. A score of 0 indicates "very
dependent upon family" , while 4 indicates "very independent". Table
2 shows the mean scores ranged from a low of 2.4 at baseline to a
high of 2.9 at Time 3. Once again the scores varied widely around
each mean, and the means varied over the seven time points. On the
average, the sample reported mean levels of independence from their
family that were above the mid point on the scale. The mean levels of
independence were increasing until Time 3 and 4, when they began to
gradually decline over time.
Examination of the raw scores was important both in terms of
the information they provided regarding family interaction patterns,
and in preparation for the HLM analyses that followed.
Table 3 presents the results of the first HLM analysis. The
results are based on an "unconditional" model, that is, a model with
no covariates specified. Table 3 displays the mean parameter
estimates of the entire sample (N = 172) for each of the dependent
variables, as well as for the "No Family Residency" subsample
(N = 140), and the "Some Family Residency" subsample (N = 32).
1 2 6
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Table 3
Summary Descriptive Statistics: Individual HLM Change Paramgta»!rg
Sample Parameter Coefficient Std. Error
T-Ratio P-Value
Quantitv of Parental Contact
All Intercept 13.4589 1.5399 8.740 0.000
(N = 143) Linear 0.2210 0.2407 0.918 0.359
Quadratic -0 .3 1 9 4 0.1363 -2.344 0.019 '
NFL Intercept 12.8840 1.6598 7.762 0.000
(N = 117) Linear 0.2592 0.2600 0.997
0.319
Quadratic -0.3308 0.1718 -1.925 0.054 T
SFL Intercept 16.0460 4.9195 3.262 0.004
IN = 261 Linear 0.0489 0.5537
0.088 0.393
Quadratic -0.2683 0.3035 -0.884
0.264
Qualitv of Parental Involvement
1 ■ Qualitv of Family Network Relationships
All Intercept 3.1551 0.1203 26.233 0.000
(N = 172) Linear 0.0048 0.0190 0.252 0.801
Quadratic -0.0299 0.0108 -2.774 0.006 •
NFL Intercept 3.1360 0.1329 23.604 0.000
IN = 140) Linear 0.0092 0.0204
0.451 0.651
Quadratic -0.0188 0.0109 -1.725 0.084 T
SFL Intercept 3.2390 0.2824
11.470 0.000
(N = 32) Linear -0.0146 0.0533 -0.274
0.380
Quadratic -0.0782 0.0321
-2.435 0.024 •
2. Satisfaction With Familv Relationshios
All Intercept 2.0992 0.0809 25.941
0.000
(N = 170) Linear -0.0181 0.0124
-1.456 0.145
Quadratic 0.0032 0.0073 0.441
0.658
NFL Intercept 2.0318 0.0901 22.543 0.000
IN = 1 38) Linear -0.0011 0.0139 -0.079 0.938
Quadratic 0.0000 0.0079 0.004 0.997
SFL Intercept 2.3900 0.1858 12.861 0.000
IN = 32) Linear -0.0914 0.0304 -3.005 0.007 •
Quadratic 0.0171 0.0176 0.971
0.245
3. Level of Indeoendence From Familv
All Intercept 2.5580 0.0927
27.598 0.000
IN = 169) Linear 0.0338 0.0143 2.366 0.018 *
Quadratic -0.0343 0.0076 -4.545
0.000 •
NFL Intercept 2.7188 0.0978 27.807
0.000
IN = 137) Linear 0.0415 0.0150 2.771
0.006 •
Quadratic -0.0411 0.0075 -5.504
0.000 *
SFL Intercept 1.8696 0.2185 8.556
0.000
IN = 32) Linear 0.0009 0.0406 0.022 0.395
Quadratic -0.0055 0.0250 -0.219
0.386
1 2 7
(
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The intercept term is important because it represents the mean
initial status for the group, based on both individual and group data.
Concerning the whole sample, the intercept coefficient (13.46) for the
Quantity of Parental Contact variable was significant (t = 8.74,
p = .00). This means that the mean level of parental contact at the
first time period was 13.46 contacts over the prior two month period,
approximately 1.6 contacts with parents per week. The intercept
differences are revealed in the graphs which depicted the individual
HLM curves over time.
The Intercept coefficient was also statistically significant for the
NFL sample (t = 7.76, p = .00). The coefficient term (12.88) indicates
that the group averaged 1.6 contacts with parents per week for the
two month period. The SFL coefficient (16.01) was significant
(t = 3.26, p = .00) and revealed a mean of 2 parental contacts per
week during the times subjects did not live in the family home.
Table 3 indicates that in regard to the Quantity of Parental
Contact, the entire sample had a mean quadratic slope that was
significant and negative (t = -2.24, p = .02) over the study period.
A negative quadratic slope can be characterized as a gradual increase
over time which peaks, and then gradually declines. This means that
the amount of parental contact for the entire sample increased over
1 2 8
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time, reached a peak at around Time 4, and then the amount of
parental contact decreased until the end of the study.
For the "No Family Residency" (NFL) sample, the mean curve
had a negative quadratic slope which approached significance
(t = -1.93, p = .05), but the "Some Family Residency" (SFL) sample did
not reveal a significant quadratic coefficient (t=-0.88, p=0.26).
The Quality of Parental Contact was first measured by the
variable labeled Quality of Family Network Relationships. Mean
parameter estimates for the entire sample (N = 172) revealed an
intercept coefficient (3.16) that was significant (t = 26.23, p = .00),
and a significant negative quadratic slope (t = -2.77, p = .01). The
mean curve for the SFL subsample (N = 32) also had a significant
intercept (3.24, t = 11.47, p = .00) and negative quadratic slope
(t = -2.44, p = .02). The NFL sample revealed a significant intercept
coefficient (3.14, t = 23.60, p = .00) and a negative quadratic term
that approached significance (t = -1.73, p = .08).
The HLM analysis revealed that for the entire sample and the
SFL sample, the mean Quality of Family Network Relationships at
baseline was below the mid point on the scale. This baseline level
was followed by significant continued improvement over time, reached
a peak at around Time 4, and then the relationships gradually
deteriorated in quality until the end of the study. The same pattern of
129
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change was revealed for the NFL sample, but did not reach statistical
significance.
These results are displayed visually in Figures 3-14, which
present the summary graphs for the entire sample: raw scores,
followed by individual HLM curves, and finally the mean HLM curve for
the sample.
1 3 0
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INDIVIDUAL HLM CHANGE TRAJECTORIES:
QUANTITY OF PARENTAL CONTACT
ENTIRE SAMPLE (N=143)
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73
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MEAN HLM CHANGE TRAJECTORY:
SATISFACTION WITH FAMILY RELATIONSHIPS
ENTIRE SAMPLE (N=170)
2.1
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2.02
1.96
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TIME PERIODS
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OBSERVED RAW SCORES:
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ENTIRE SAMPLE (N=172)
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Figure 10
INDIVIDUAL HLM CHANGE TRAJECTORIES:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
ENTIRE SAMPLE (N=172)
H
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TIME PERIODS
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MEAN HLM CHANGE TRAJECTORY:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
ENTIRE SAMPLE (N=172)
3.45
3.4
3.35
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3.2
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TIME PERIODS
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73
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Figure 13
INDIVIDUAL HLM CHANGE TRAJECTORIES:
INDEPENDENCE FROM FAMILY
ENTIRE SAMPLE (N=169)
4
%
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-1
H
TIME PERIODS
73
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MEAN HLM CHANGE TRAJECTORY: INDEPENDENCE FROM FAMILY
ENTIRE SAMPLE (N=169)
2.9
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I 2.5
2.4
2.3
1 2 3 4 5 6 7
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TIME PERIODS
Specifically, Figures 3-5 represent Quantity of Parental Contact;
Figures 6-8 represent Satisfaction with Family Relationships; Figures
9-11 graph the dependent variable Quality of Family Network
Relationships; and Figures 12-14 display the changes in Level of
Independence from Family.
The second variable used to measure the quality of parental
contact was Satisfaction with Family Relationships (see Table 3). The
intercept coefficients were significant for the entire sample
(coefficient = 2.10, t = 25.94, p = .00), the NFL sample
(coefficient = 2.03, t = 22.54, p = .00), and the SFL sample
(coefficient = 2.40, t = 12.86, p = .00). This means that overall, the
reported Satisfaction with Family Relationships at baseline was at the
mid point on the scale. The only other mean parameter estimate that
reached significance was for the SFL sample, which had a negative
linear slope over time (t=-3.01, p = .01). The negative linear slope
indicates that levels of satisfaction in regard to family relationships, for
those who lived for any days with their family, steadily declined over
the three year period of the study.
The final quality of parental contact variable measured was the
Level of Independence from Family (see Table 3). For the entire
sample, the intercept coefficient intercept (2.56) was significant
(t = 27.60, p = .00), as were the positive linear slope (t = 2.37,
143
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p = .02), and the negative quadratic coefficient (t = -4.55, p = .00).
The mean curve for the NFL subsample also had a significant
intercept {coefficient = 2.72, t = 27.81, p = .00), a positive linear slope
(t = 2.77, p = .01), as well as a significant negative quadratic term
(t=-5.50, p = .00). Only the intercept term was significant for the SFL
sample (coefficient = 1.87, t = 8.56, p = .00).
These results indicate that for the entire sample, as well as for
the group who did not reside with family, individuals reported mean
baseline levels of independence from the family that were above the
mid point on the scale, followed by a significant overall increase. This
increased rate of independence was in the form of a gradual increase
in independence which peaked in mid-study, and a gradual decline
which still remained significantly higher at the end of the study than at
baseline. The mean baseline levels of independence for the SFL
groups were lower than for the other two samples.
(a) Summarv of Raw Data: The raw data levels revealed
that both the quantity and quality of parental involvement for the
entire sample varied widely over time. Mean scores for the quantity of
parental contact, quality of family relationships, and level of
independence from family at the seven data points showed similar
patterns. The highest mean raw scores tended to be at Time 3 (for
Quantity of Contact) or Times 3 and 4 (Quality of Family Network
144
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Relationships and Level of Independence from Family). The lowest
mean raw scores tended to be at the beginning and end of the study:
Times 2 and 7 for Quantity of Contact, Times 1 and 7 for Quality of
Family Relationships, and Times 1, 6 and 7 for Level of Independence.
These raw scores suggest that for these three variables, subjects
were showing increased amounts of contact, better family
relationships, and increased levels of independence from family until
approximately 12-18 months into the study. After this point, the
increases ceased, and the scores began to decline until the end of the
study.
The raw scores on Satisfaction with Family Relationships
revealed a different pattern, however. The high mean score was at
Time 1, and the mean scores consistently declined for the duration of
the study. In other words, subjects began the study at their highest
mean level of satisfaction, which continued to drop as the study
progressed.
(b) Summarv of HLM analvses: The HLM analyses
revealed the patterns of change even more vividly than the raw scores,
as they incorporated individual data with group trends. The mean
baseline level of Quantity of Parental Contact for the entire sample and
the NFL sample was 1.6 contacts per week with parents, with the
highest initial level reported for the SFL sample, with a mean of 2
145
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contacts per week for the previous 2 months. The full sample's mean
baseline levels of two other variables were either very close to the mid
point on the scale (Satisfaction with Family Relationships), or above
the mid point (Independence from Family). The SFL sample had the
highest baseline Satisfaction with Family Relationships mean score,
and the lowest mean score for Independence from Family. The Quality
of Family Network Relationships had mean baseline levels which were
below the scale's mid point for all three groups.
In terms of change over time, three variables showed
significant improvement over time. Increases in the Quantity of
Parental Contact, Quality of Family Network Relationships, and
Independence from Family reached a peak and leveled off between
Time 3 and 4, followed by a gradual decline over the rest of the study.
In addition, some variables duplicated these patterns in the "no
family residency" (NFL) and "some family residency" (SFL)
subsamples. The pattern of wide variation at baseline measurement,
followed by a gradual improvement, leveling off, and gradual decline
was also revealed in trends for the NFL subsample in terms of quantity
of contact and quality of family network relationships. The pattern
was significant for the SFL subsample in terms of the quality of family
network relationships.
1 4 6
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The Level of independence from Family variable revealed a
significant positive linear trend for both the full sample and the NFL
sample, indicating that although there was a gradual decline after the
initial peak, subjects did show a significant increase in independence
overall. Subjects did not decline to their baseline level of
independence, but showed a general increase over the entire study.
The Satisfaction with Family Relationships variable did not
reveal significant linear or quadratic change for the whole sample, but
the SFL subsample revealed a significant negative linear pattern.
Subjects who resided with family at some time during the study had
steadily declining levels of satisfaction over time. Even though the
results were not significant for the entire sample, the mean HLM curve
graphically reveals results consistent with both the mean raw score
pattern and the HLM curve for the SFL subsample.
2. Question 1(b): Is the family residency of the subject
associated with differences in the quantity and quality of parental
involvement over time?
To answer Question 1 (b), the condition of family residency of
the subject was entered as a predictor, or covariate. This portion of
the analysis was performed to determine if there were differences in
1 4 7
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the quantity and quality of parental involvement based on whether or
not subjects lived with their family at any time during the study.
Table 4 presents the interaction coefficients, standard errors, t-
ratios, and p-values for the parameter estimates obtained in the HLM
analysis. The interaction coefficients are the weights associated the
intercept, linear slope, and quadratic slope when family residency is
used as a predictor. Table 4 presents the results of the analysis
coding for those who never lived any days with their family ("No
Family Living" or NFL) and those who moved between family and
community residence ("Some Family Living" or SFL). As the quantity
of contact was only measured during the times of non-family
residency, those subjects in the SFL group had some periods of
"missing" data for the Quantity of Parental Contact variable. The HLM
program then used data from the group to arrive at the best parameter
estimates. The parameter estimates conditional upon the coding of
the family residency were then graphed to display the different forms
of change.
When significant covariate effects are detected, it must be
determined exactly what the differences are, i.e. what the estimated
intercept (linear, quadratic) would be for each group. This is
accomplished by inserting the coefficient values from the covariate
1 4 8
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Table 4
Effect of Family Residency
Parameter Interaction
Coefficient
Std. Error T-Ratio P-Value
Quantity of Parental Contact
Int -0.7051
Lin -0.1653
Quad -0.0629
4.2607
0.6423
0.3935
-0.165
-0.257
-0.160
0.869
0.797
0.873
Quality of Parental Inyolyement
1. Quality of Family Network Relationshios
Int 0.1031
Lin -0.0239
Quad -0.0594
0.3099
0.0490
0.0274
0.333
-0.487
-2.170
0.739
0.626
0 .0 3 0 **
2. Satisfaction With Familv Relationshios
Int 0.2377
Lin -0.0508
Quad 0.0197
0.2130
0.0333
0.0193
1.116
-1.527
1.024
0.265
0.127
0.306
3. Leyel of Independence From Family
Int -0.4620
Lin 0.0416
Quad 0.0023
0.2407
0.0373
0.0198
-1.919
1.114
0.114
0.054 *
0.266
0.910
*(p =<.10) **(p=<.05)
1 4 9
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analysis into the Level 2 equation for the significant parameter, and
multiplying the final coefficient by the corresponding covariate coding.
For example, if a significant linear X covariate effect is found for
treatment, the following Level 2 formula for the linear slope would be
solved for each treatment group: B 1 =G10 + G11 * (TXGRP).
B1 is the estimated population parameter, G10 is the estimated linear
parameter, and G11 is the effect of the group on the linear slope.
None of the parameters were statistically significant concerning
the quantity of parental contact based on family residency. The
interaction coefficients based on family residency were: intercept
coefficient: t = -0.17 (p = 0.87); linear coefficient: t = -0.26 (p = .80);
and the quadratic coefficient: t = -0.16 (p =0.87).
The Level of Satisfaction with Family Relationships showed no
significant differences based on whether they were living with family
or not. In terms of the Level of Independence From Family,
differences in intercepts based on NFL vs. SFL approached significance
(t = 1.92, p = .05). This indicates that the level of independence from
family was different at the beginning of the study depending upon the
family residency of the individual. At baseline, the group of individuals
that never lived with their family during the study reported higher
levels of independence from family than the SFL group.
1 5 0
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The Quality of Family Network Relationships revealed a
significant negative quadratic term based on the living situation of the
subject (t = -2.17, p = .03). Figure 15 displays the mean change
curves for the NFL and SFL groups on the variable. The nature of
change in the quality of family network relationships for NFL sample is
nearly flat over time, while the SFL sample gradually increases to a
peak at time 4, and then gradually decreases to the approximate level
determined at baseline. In other words, there was little change in the
quality of family relationships for those who did not live with family.
But for those who did have some period of residency in the family
home, there was gradual improvement, followed by a decrease in the
quality of the relationships.
8. COVARIATE ANALYSIS:
TREATMENT TYPE & CLIENT CHARACTERISTICS
The aim of this portion of the analysis was to explore possible
systematic differences in the quantity and quality of parental contact
based on client characteristics or service type. The results were
produced in Level 2 of the HLM analysis, in which the individual
parameter estimates from Level 1 served as dependent variables, and
the covariates are used as predictors.
1 5 1
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73
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Figure 15
MEAN HLM CHANGE TRAJECTORIES BY FAMILY RESIDENCY:
FAMILY NETWORK RELATIONSHIPS
ENTIRE SAMPLE (N=172)
3.5
2.5
I I
0.5
1 2 3 4 5 6 7
-NFL SAMPLE
•SFL SAMPLE
H
m
to
TIME PERIODS
The covariates examined in this portion of the analysis were:
1 -treatment group (intensive = Portals or CLP; nonintensive = case
management); 2-gender; 3-racial category; and 4-age of onset.
All covariates were used with each of the four dependent
variables used in the descriptive analysis: 1 -quantity of parental
contact; 2-satisfaction with family relationships; 3-level of
Independence from family; and 4-quality of family network
relationships.
The covariate analyses described were performed separately for
the three samples: 1 -the entire sample; 2-the NFL subsample; and
3-the SFL subsample.
The results of the covariate analyses are presented in a series of
tables, each representing one covariate, and its effect on the quantity
and quality of parental involvement. Each table presents the Level 2
interaction coefficients for the entire sample, as well as for the two
subsamples (NFL and SFL) with each of the four dependent variables
listed above.
Table 5 presents the effects of participation in intensive and
nonintensive psychosocial rehabilitation treatment on the quantity and
quality of parental involvement.
1 5 3
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Table 5
Effect of Treatm ent Group on
Quantity & Quality of Parental Involvement
Sample N Intercept
Interaction Coefficients:
Linear Quadratic
Quantity of Parental Contact
All
NFL
SFL
143
117
26
1.6555
1.7386
-20.2255
0.5410
0.4900
6.1928 * * *
-0.4153
-0.5560
0.5996
Quality of Parental Involvement
1. Quality of Family Network Relationships
All
NFL
SFL
172
140
32
0.2108
0.2965
-2.5000
0.0208
0.0167
0.5431 *
0.0074
0.0302
-0.0535
2. Satisfaction With Familv Relationships
All
NFL
SFL
170
138
32
0.0380
-0.0803
0.1200
-0.0326
-0.0066
-0.0335
0.0126
0.0128
-0.1480
3. Independence From Family
All
NFL
SFL
169
137
32
0.1692
0.2347
-1.2062
-0.0886
-0.0595
-0.0914
0.0095
-0.0006
0.0578
* (p= <.10) (p = < .05) * * * (p=<.01)
All = Total Sample
NFL = No Family Residency Sample
SFL = Some Family Residency Sample
1 5 4
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1. Hypothesis 2(a) - Treatment Group: There will be
differences in the quantity and quality of parental involvement over
time based on participation in intensive vs. non-intensive rehabilitative
treatment.
The first covariate presented is participation in intensive
treatment (a combined sample of those in Portals and CLP) or
nonintensive treatment. As described in an earlier section, attrition in
the treatment programs was addressed in the study by analyzing
systematic treatment differences in two ways. First, the entire sample
was simply analyzed by their group membership as identified at
baseline. This was also done with the NFL and SFL subsamples.
Second, only those actually participating in either intensive or
nonintensive treatment at each measurement point were included in
the sample. Identical analyses were performed on the entire sample,
as well as NFL and SFL subsamples. No differences emerged between
the two types of analyses, and therefore the results presented reflect
the analysis of subjects who were in treatment at each time point.
When treatment type is used as a covariate, the SFL subsample
resulted in only one subject in the low intensity treatment group.
Therefore only subsample results for the high intensity group will be
reported.
1 5 5
1
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Quantity o f Parental Contact: Table 5 shows that in
regard to the Quantity of Parental Contact, analysis of the "No Family
Residency" (NFL) sample resulted in a negative quadratic interaction
term that approached significance (t = -1.65, p =. 10). Figure 16
displays the differences in the quantity of parental contact based on
treatment group found for the NFL sample. Those subjects in the low
intensity treatment group showed little change over time, but the high
intensity group showed higher levels of contact at all time periods,
which gradually increased until Time 4, and then gradually decreased.
Although the results are not statistically significant, they offer
compelling evidence of the differing quantity of parental contact based
on the intensity of treatment.
For the SFL sample, the mean linear slope was significant and
negative (t = -3.45, p = .00). In addition, there were significantly
different linear terms based on treatment group (t = 3.36, p = .00).
As only one subject was in the low intensity group, no results for the
low intensity treatment condition are reported . Figure 17 displays the
individual curves for all subjects in the high intensity group, while
Figure 18 displays the mean curve for the group.
Satisfaction with Famiiy Relationships: No significant
differences in the linear or quadratic change parameters based on
treatment group were detected.
156
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MEAN HLM CHANGE TRAJECTORIES BY TREATMENT TYPE:
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N=117)
25
Ü 20
< 15
1 2 3 4 6 5 7
— —ENTIRE
TIME PERIODS
H
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INDIVIDUAL HLM CHANGE TRAJECTORIES
OF HIGH INTENSITY TREATMENT GROUP (N=26) :
QUANTITY OF PARENTAL CONTACT
H
m
0 0
SOME FAMILY RESIDENCY " SAMPLE (N=27)
100
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60
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TIME PERIODS
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MEAN HLM CHANGE TRAJECTORY BY TREATMENT GROUP (N=26):
QUANTITY OF PARENTAL CONTACT
SOME FAMILY RESIDENCY " SAMPLE (N=27)
o 16
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u.
1 2 3 4 5 6 7
■ H IG H
TIME PERIODS
u i
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Quality of Family Network Relationships: In regard to the
Quality of Family Network Relationships, the NFL sample had a mean
negative quadratic term that approached significance (t=-1.83,
p = .07), but no group effects based on treatment group were
observed. For the SFL subsample, those in different treatment groups
had differences between the linear terms that approached significance
{t = 1.75, p = .09). Figure 19 displays the curve over time for the high
intensity treatment group only, as only one subject was present in the
low intensity group. For those who lived with their family at some
point in the study and participated in the high intensity treatment
group, the results showed a very gradual increase in the quality of
family relationships, followed by a slow decline after Time 4.
Level of Independence from Family: No significantly
different change parameters based on treatment group were detected
for Level of Independence from Family, but there were significant and
positive mean linear terms for the entire sample (t = 2.80, p = .01 ) and
for the NFL subsample (t = 2.33, p = .020). This means that as a
group, the entire sample and the NFL subsample reported increasing
levels of independence over time, but that the rates of change did not
vary systematically based on the intensity of the type of treatment.
1 6 0
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73
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Figure 19
MEAN HLM CHANGE TRAJECTORY BY TREATMENT GROUP:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
H
CT\
H
SOME FAMILY RESIDENCY" SAMPLE (N=32)
3.5
I a
5 3
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g
i '
1.5
Z
I
0.5
2 4 3 5 1 6 7
•HIGH INTENSITY
TIME PERIODS
In summary, the results for Hypothesis 2(a) suggest that
participation in high or low intensity treatment does not significantly
predict the quantity or quality of parental involvement.
2. Hvpothesis 2(b) - Gender: There will be differences in the
quantity and quality of parental involvement over time based on
gender.
The results of the covariate analysis did not detect systematic
differences due to gender. Table 6 presents the intercept, linear slope,
and quadratic coefficients based on gender for the entire sample, as
well as for NFL and SFL subsamples, on all four dependent variables.
Quantity o f Parental Contact: No significant differences
in parameter estimates based on gender were observed.
Satisfaction with Family Relationships: In regard to
Satisfaction with Family Relationships, the SFL subsample revealed
differences in linear terms based on gender that neared significance
(t = -2.00, p = .06). Figure 20 represents this trend toward differences
in Satisfaction with Family Relationships based on gender for the SFL
subsample. The graph indicates that females showed very little
change over time in terms of satisfaction with family, while males
showed a decline in satisfaction over time that leveled out at about
Time 5 until the end of the study. While not reaching statistical
significance, the graph is revealing in regard to patterns of change.
162
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Table 6
Effect of Gender on Quantity & Quality of Parental Involvement
Sample N Intercept
Quantity of Parental Contact
All
NFL
SFL
143
117
26
-2.1819
-3.0661
1.9801
Interaction Coefficients:
Linear
0.0295
0.4242
-1.6012
Quadratic
0.1721
0.0310
0.7544
Quality of Parental Involvement
1. Quality of Family Network Relationships
All
NFL
SFL
172
140
32
-0.3651
-0.5170 ♦
0.2003
-0.0425
-0.0238
-0.1192
-0.0006
0.0000
-0.0245
2. Satisfaction With Family Relationships
All 170 0.2502 -0.0374 0.0111
NFL 138 0.2698 -0.0218 0.0103
SFL 32 0.3147 -0.1258 * 0.0202
3. Independence From Family
All 169 0.1458 0.0069 -0.0255
NFL 137 0.0643 0.0057 -0.0084
SFL 32 0.1201 -0.0039 -0.0726
*(p = < .10 ) * * p = < .0 5
All = Total Sample
NFL = No Family Residency Sample
SFL = Some Family Residency Sample
1 6 3
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MEAN HLM CHANGE TRAJECTORIES BY GENDER:
SATISFACTION WITH FAMILY RELATIONSHIPS
SOME FAMILY RESIDENCY" SAMPLE (N=32)
2.5
UL (0
b |
0.5
1 2 3 4 5 6 7
■♦-GRAND MEAN
«-FEMALES
— X— MALES
H
c r >
ft
TIME PERIODS
Quality o f Family Network Relationships". In regard to the
Quality of Family Network Relationships variable, the NFL subsample
showed a trend toward differences In Initial status based on gender
(t= -1 .68, p = .09). Figure 21 graphs the Quality of Family Network
Relationships variable for the NFL subsample. Although not
significant, the trend reveals that females had higher levels of quality
of family relationships than males at baseline.
Level o f Independence from Family. The mean slope for
the NFL subsample was significant and negative (t=-2.28, p = .02).
No significant differences based on gender were detected In the
parameter estimates for level of independence from family, either for
the entire sample or for either of the two subsamples.
In summary, Hypothesis 2(b) was not supported with this
sample. Gender did not significantly predict differences In the quantity
or quality of parental Involvement over time.
3. Hvpothesis 2(c ) - Racial Cateaorv: There will be differences
In the quantity and quality of parental Involvement over time based on
racial category.
Table 7 presents the estimated Interaction coefficients with
racial category as the covariate. The results for each dependent
variable are presented below. Due to the small size of the Aslan and
165
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Figure 21
MEAN HLM CHANGE TRAJECTORIES BY GENDER:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
"NO FAMILY RESIDENCY" SAMPLE (N=140)
■GRAND MEAN |
•FEMALES
■MALES
c r >
c r >
TIME PERIODS
Table 7
Effects of Racial Group on Quantity & Quality of Parental Involvement
Sample N Intercept
Quantity of Parental Contact
Interaction Coefficients:
Linear
All 143 -2.1052
NFL 117 -0.3189
SFL 26 -9.9400 * *
-0.3044
-0.3415
-0.2078
Quadratic
-0.1631
-0.3256
0.1987
Quality of Parental Involvement
1 ■ Quality of Family Network Relationships
All
NFL
SFL
172
140
32
0.1323
0.1747
0.0430
-0.0005
0.0052
-0.0028
0.0091
0.0107
0.0340
2. Satisfaction With Family Relationships
All
NFL
SFL
170
138
32
0.0430
0.1473
-0.0430
-0.0192
-0.0204
-0.0192
0.0016
0.0131
0.0016
3. Independence From Family
All
NFL
SFL
169
137
32
-0.1662 *
0.0233
-0.2497
0.0134
0.0135
0.0350
-0.0007
0.0067
-0.0313
(p = < .10) (p = <.05)
All = Total Sample
NFL = No Family Residency Sample
SFL = Some Family Residency Sample
1 6 7
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Other racial category, analyses were performed both with all four racial
categories, and with only Caucasian, African American, and Latino
subjects included. No significant differences in results emerged. To
preserve the individual differences in the sample to the greatest extent
possible, the analyses presented are those which used all of the racial
categories, but no conclusions may be drawn regarding the Asian and
Other category due to the small sample size.
Quantity o f Parental Contact: The SFL subsample had
significantly different baseline coefficients based on race (t = -2.26,
p = .04). The level 2 interaction coefficient values were placed into
the equation for intercepts (B0= GOO + G01 * (Race). B O was the
estimated intercept for the population, GOO was the mean estimated
intercept, and GOl was the effect of the racial group on the intercept
term.
The following estimated intercepts for each group were
obtained;
Caucasian: 29.427
African American: 19.487
Latino: 9.547
Asian & Other: -0.393
Figure 22 charts the amount of parental contact for each racial
category over time using the mean parameter estimates. Results
suggest that in regard to intercept differences in the quantity of
168
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73
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Figure 22
MEAN HLM CHANGE TRAJECTORIES BY RACIAL CATEGORY:
QUANTITY OF PARENTAL CONTACT
SOME FAMILY RESIDENCY" SAMPLE (N=26)
I
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te . 20
2 !
u.
O 1R
-♦-GRAND MEAN
-«-W HITE
— A— BLACK
— X—LATINO
HK-ASIAN & OTHER
0 »
1 2 3 4 5 6 7
TIME PERIODS
c r >
VO
parental contact for the SFL subsample, the Latino racial category had
the lowest levels of parental contact, followed in increasing order by
African Americans and Caucasians. The Asian & Other racial category
had the lowest levels of contact, but no conclusions may be drawn
due to the extremely small sample.
Satisfaction with Family Relationships: No significantly
different parameters based on racial category were detected.
Quality of Family Network Relationships: No significant
differences in change in the Quality of Family Network Relationships
based on racial category were detected. In terms of the entire sample,
the mean quadratic term for the Quality of Family Network
Relationships was significant and negative (t=-2.06, p = .04). For this
same variable, the mean quadratic term for the SFL subsample was
also significant (t=-2.28, p = .03). The full sample, as well as the
SFL subsample, showed change in the quality of family relationships
that Increased over time, reached a peak and then gradually declined,
but change was not related to racial category.
Independence From Family: No significant differences in
independence based on racial category were revealed. As discussed
in the descriptive portion of the analysis, the mean quadratic term for
the full sample was significant and negative (t=-2.12, p = .03), as well
as the mean quadratic term for the NFL subsample (t = -3.22, p = .00).
170
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This indicates that the complete sample, as well as the NFL
subsample displayed a change over time in the level of independence
from family. The mean scores increased over time, and then gradually
decreased.
For the complete sample, there was a difference between
intercept coefficients based on racial category that approached
significance (t= -1 .77, p = .08). Figure 23 presents the Level of
Independence from Family charted over time in order to examine the
trend toward different baseline levels based on racial category. Again,
these results must be viewed with caution due to the small size of the
Asian and Other category. The racial category "Asian & Other" had
the lowest baseline levels of independence from family, followed in
increasing order by Latinos, Caucasians, with African Americans
revealing the highest levels of independence.
In summary. Hypothesis 2(c ) was supported for the Quantity
of Parental Contact for the SFL subsample in terms of differences in
intercepts. The baseline quantities of parental contact for the SFL
subsample were significantly different based on racial category.
4. Hvpothesis 2(d) - Aoe of Onset: There will be differences in
the quantity and quality of parental involvement over time based on
age of onset.
171
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73
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Figure 23
MEAN HLM CHANGE TRAJECTORIES BY RACIAL CATEGORY:
INDEPENDENCE FROM FAMILY
ENTIRE SAMPLE (N=172)
3.5
S 2.5
I-
UJ
u
s
a
z
UJ
0.
Ul
Q
Z
0.5
1 2 3 4 5 6 7
GRAND MEAN
WHITE
BLACK
LATINO
ASIAN & OTHER I
H
to
TIME PERIODS
Table 8 contains the results of the covariate analysis using age
of onset to detect systematic differences in the quantity and quality of
parental involvement. Age was used as a continuous covariate. When
equations are solved for significant covariate results, specific ages are
used to illustrate the effect of the coefficients on the parameter value.
Quantity o f Parental Contact: No significant differences
in the quantity of parental contact based on the subject's age of onset
were detected.
Satisfaction with Family Relationships: No significant
differences emerged regarding the satisfaction with family
relationships based on age of onset.
Quality o f Family Network Relationships: In terms of the
Quality of Family Network Relationships, both the entire sample and
the NFL subsample had significant results.
As a group, the full sample had a significant positive mean linear
slope (t = 2.17, p = .03), as well as a significant interaction between
age of onset and the quality of family relationships for the linear
coefficient (t=-2.19, p = .03). Solving the Level 2 equations resulted
in the following sample linear slope estimates for selected ages of
onset for the whole sample:
Age 10
Age 20
Age 30
Age 40
.0775
.0175
-.0475
-.1175
173
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Table 8
Effect of Age of Onset on Quantity & Quality of Parental Involvement
Interaction Coefficients:
Sample N Interceot Linear Quadratic
Quantity of Parental Contact
All
NFL
SFL
143
117
26
-0.2420
-0.4190
-0.4672
0.0092
0.0326
-0.0890
0.0070
-0.0077
0.0456
Quality of Parental Inyolyement
1. Quality of Family Network Relationships
All
NFL
SFL
172
140
32
0.0166
0.0200
-0.0026
-0.0064**
-0.0066**
-0.0065
0.0008
0.0006
-0.0005
2. Satisfaction With Family Relationshios
All
NFL
SFL
170
138
32
0.0064
0.0150
0.0256
-0.0020
-0.0010
-0.0077
0.0004
0.0005
0.0004
3. Independence From Family
All
NFL
SFL
169
137
32
0.0075
-0.0080
-0.0041
0.0 04 4 **
0.0042 *
0.0052
-0.0005
-0.0011
-0.0019
* (p =
<.10) ** (p = <.05)
All = Total Sample
NFL = No Family Residency Sample
SFL = Some Family Residency Sample
1 7 4
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 24 presents the mean change curves of the Quality of
Family Network Relationships for the entire sample, based on age of
onset categories. The results Indicated that over time, the entire
sample revealed slight Improvement In the quality of family
relationships. In addition, the linear terms differed based on the
subject's age of onset. Those who had earlier ages of onset showed
general Improvement In family relationships over time. But the group
of Individuals who had an age of onset after age 40 showed a steady
decrease In the quality of relationships over the length of the study.
The NFL subsample had a mean linear slope for Quality of
Family Network Relationships that was positive and significant
(t = 2.21, p = .03). There was a significant effect based on age of
onset {t = -2.17, p = .03). The resulting linear slope estimates for
selected ages of onset are as follows:
Age 10
Age 20
Age 30
Age 40
.0916
.0256
-.0404
-.1064
The mean linear slopes for the Quality of Family Network
Relationships based on age of onset category are depicted for the NFL
subsample In Figure 25. The results for the NFL subsample are the
1 7 5
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73
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Figure 24
MEAN HLM CHANGE TRAJECTORIES BY AGE OF ONSET CATEGORY:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
ENTIRE SAMPLE (N=172)
3.5
i
g 3
o
^ 2.5
K
S 2
o
z
li.
0.5
1 2 3 4 5 6 7
— ♦“ GRAND MEAN
-#-A G E 8-19
AGE 20-29
— O— AGE 30-39
M AGE 40+
TIME PERIODS
H
C h
7 3
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3
Figure 25
MEAN HLM CHANGE TRAJECTORIES BY AGE OF ONSET CATEGORY:
QUALITY OF FAMILY NETWORK RELATIONSHIPS
NO FAMILY RESIDENCY” SAMPLE (N=140)
3.5
g
X
(0
z
o
5
2.5
g
i
z
s
0.5
1 2 3 4 5 6 7
— ♦— GRAND MEAN
Hi-AGE 8-19
-A-AGE 20-29
X AGE 30-39
X AGE 40+
H
-J
TIME PERIODS
same as for the complete sample. Those who had earlier ages of
onset (up through age 39) showed an improvement in family
relationships over time. The group with late onset (age 40 and over)
revealed a significant deterioration in the quality of family
relationships.
Independence From Family: Considering the entire
sample, the analysis revealed significantly different linear terms for the
Level of Independence from Family based on age of onset (t= 1.98,
p = .05). The resulting linear coefficients are as follows for selected
ages of onset:
10: -.0194
20: .0246
30: .0686
40: .1126
Figure 26 presents the significantly different linear curves for
Independence from Family, based on the subject's age of onset. The
results indicate that for the entire sample, the later the age of onset,
the greater the rate of increased independence from family over time.
Those with the earliest age of onset had the lowest rates of increased
independence.
For the NFL subsample, a trend toward significant differences in
linear terms based on age of onset was detected (t= 1.86, p = .06).
1 7 8
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O
Q.
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s
Q.
T 3
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C /J
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8
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C/J
C/J
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3
Figure 26
MEAN HLM CHANGE TRAJECTORIES BY AGE OF ONSET:
INDEPENDENCE FROM FAMILY
ENTIRE SAMPLE (N=172)
3.5
3
S 2.5
2
1.5
1
0.5
0
1 2 3 4 5 6 7
■GRAND MEAN
-AGE 20 & UNDER
■AGE 21-30
-AGE 31 & OVER
H
C O
TIME PERIODS
No significant interactions based on onset were found for the SFL
subsample.
In summary. Hypothesis 2(d) was supported for the following
variables: 1-Quality of Family Network Relationships: the entire
sample and the NFL subsample showed significant differences in the
rates of change (linear coefficients) based on age of onset. The earlier
ages of onset showed slight improvement over time in family
relationships, but as the age of onset increases, the change becomes a
deterioration in family relationships; 2-Level of Independence from
Family: the entire sample showed significant differences in the rates of
change (linear coefficients) based on age of onset. The later the age
of onset, the more positive the change in level of independence from
family.
C. MODEL TESTING
The final portion of the analysis y/il! test hypotheses based on
psychosocial developmental models of individual, family, and illness
processes to determine if family developmental fluctuations vary in
ways predicted by normative age categories, phase of illness, or the
interaction of age and phase of illness.
The hypotheses will determine for the current sample if the
fluctuations in the amount of parental contact hypothesized to be
180
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present in normal family development are present when one member is
diagnosed with schizophrenia. Quantity of contact is one aspect of
family involvement that is hypothesized to fluctuate depending upon
the developmental cycle of the individual and family.
This initial test of the model will use the NFL subsample, those
subjects who did not live with family during the study. This approach
was used to clarify the distinction between days of living with family,
and contact with family. When a subject returned to the family home
for any period of time, no "amount of contact" data was collected.
Only those subjects who did not have any days of family residency are
included in this initial test of the model to obtain as "clean" a measure
of amount of contact as possible, and to eliminate the confound with
days of residency with family.
The age categories are based on Levinson's (1978; 1986) work,
which states that the transition period is a time of reappraisal and life
structure change for the next developmental period. Therefore, the
transition period is included in the developmental course which follows
the rethinking and alteration of life course.
Bryk and Raudenbush (1992) recommend analysis of the data
with an unconditional model (no covariates) prior to the fitted model.
The Level 1 model for Quantity of Parental Contact, the individual HLM
curves, was completed in the descriptive portion of the analysis, and
181
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will provide the unconditional model coefficients in this part of the
analysis. Table 3 presented the unconditional parameter estimates of
Quantity of Parental Contact for the No Family Residency sample.
Hypothesis Testing of Aoe: Levinson's Normative Model
Question 3fa): Based on Levinson's normative age categories,
is age significant in predicting levels of parental contact in community-
based individuals diagnosed with schizophrenia?
No significant differences in the quantity of parental contact
based on age were found in the Level 2 HLM analysis. The
interaction terms for the quantity of parental contact and age were as
follows: intercept: t = -0.51 (p = .61); linear slope: t = -0.16
(p = .87); quadratic term: t = -0.47 (p = .64).
Hypothesis 3(a), . The normative model predicts that those
individuals aged 17-27 (which includes the Early Adult Transition up to
the beginning of the "Age 30 Transition" period) will show: negative
linear, and/or positive quadratic change in parental contact.
Figure 27 presents the mean HLM curves for Quantity of
Parental Contact for all three age groups. Figure 28 displays the
individual change trajectories for those individuals ages 17-27 at
baseline, while Figure 29 reveals the mean curve for the age group.
1 8 2
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3
Figure 27
MEAN HLM CHANGE TRAJECTORIES BY AGE GROUP
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY " SAMPLE (N=117)
18
16
14
O 12
10
8
6
4
2
0
1 2 3 4 5 6 7
■AGES 17-27
■AGES 28-39
AGES 40-59
œ
w
TIME PERIODS
73
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Figure 28
INDIVIDUAL HLM CHANGE TRAJECTORIES FOR AGES 17-27 (N=28)
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N=117)
p 60
Q . 30
3 10
H
00
T I M E P E R I O D S
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Figure 29
MEAN HLM CHANGE TRAJECTORY FOR AGES 17-27
QUANTITY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY" SAMPLE (N=117)
(N=28)
18
16
14
12
10
8
6
4
2
0
1 2 3 4 5 6 7
H
00
Ul
TIME PERIODS
Based on the hypothesis of normal development, we fail to reject the
null, and conclude that no differences in the form of change in parental
contact were present based on normative age categories.
The results for the age 17-27 group suggest that for those who
did not live with family over the three year study period, the quantity
of contact gradually increased over time until it peaked between Time
4 - and 5, and then very gradually declined to a higher level of contact
than at baseline. Although the curves were not statistically
significantly different based on normative age categories, the results
provide the first notion of the pattern of change for those chronically
mentally ill and living apart from family. Conclusions must be drawn
with extreme care due to the small sample sizes when broken down by
age categories.
Hvpothesis 3(a)? : Those individuals aged 28-39 (which includes
the "Age 30 Transition" up to the beginning of the "Midlife Transition"
period) will show; positive linear, and/or negative quadratic change in
parental contact.
Figures 30 and 31 reveal the patterns of change for the
individuals and the mean curve for those in the age 28-39 group.
Although the covariate analysis did not reveal statistically
significant differences in parental contact based on age, the mean
change curves for this age group are in the predicted direction. There
186
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Q.
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Figure 30
INDIVIDUAL HLM CHANGE TRAJECTORIES FOR AGES 28-39 (N=72)
QUANTITY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY" SAMPLE (N=117)
H
00
TIME PERIODS
7 3
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Figure 31
MEAN HLM CHANGE TRAJECTORY FOR AGES 28-39 (N=72)
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N=117)
§ 14 -
8 1 2
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a
1 2 3 4 5 6 7
H
œ
œ
TIME PERIODS
■ J
is a positive linear slope, and a negative quadratic slope. The results
indicate that for the age 28-39 group, there was a slight overall
increase in parental contact. The form of the change was that a
gradual increase was followed by a gradual decrease.
The null hypothesis cannot be rejected, but the rate and type of
change is consistent with the hypothesis for the age group.
Hypothesis 3(a)o : Those individuals aged 40-59 (which
includes the "Midlife Transition" period up to the beginning of the
"Late Adult Transition") will show; negative linear, and/or positive
quadratic form of change in parental contact.
Figures 32 and 33 are the graphed results (individual and mean
curves respectively) for the ages 40-59 subsample.
This age group also displayed a gradual increase in the amount
of contact which reached a peak at approximately 24 months into the
study, followed by a gradual and very slight decline.
Summary of Age Hypotheses: No statistically significant
differences in the quantity of parental contact based on normative age
categories were found. The change curves of the three age groups are
not significantly different from each other. The results suggest that
for this sample of chronically mentally ill persons living in the
community, predicted fluctuations in family involvement based only on
1 8 9
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73
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3
Figure 32
INDIVIDUAL HLM CHANGE TRAJECTORIES FOR AGES 40-59 (N=17)
QUANTITY OF PARENTAL CONTACT
I
u
I
o
I
H
VX)
o
NO FAMILY RESIDENCY " SAMPLE (N=117)
90
80
70
60
50
40
30
20
10
0
-10
TIME PERIODS
73
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Figure 33
MEAN HLM CHANGE TRAJECTORY FOR AGES 40 59 (N=17)
QUANTITY OF PARENTAL CONTACT
I
I
b
I
NO FAMILY RESIDENCY" SAMPLE (N=117)
18
16
14
12
10
8
6
4
2
0
1 2 3 4 5 6 7
H
C O
TIME PERIODS
• » *
normative age categories were not supported by the data. The
patterns that have emerged for the sample are presented in Figure 34.
Each section represents a three year pattern of change for a particular
age group. Again, caution must be used when interpreting the results,
due to the small sizes of the age subgroups.
Hvpothesis Testing of Phase of Illness: Familv Svstems/lllness
Model Adapted for Schizophrenia
Question 3(b): Based on Holland's model of chronic illness, is
phase of illness significant in predicting the level of parental contact
for community-based individuals diagnosed with schizophrenia?
Overall, the Level 2 HLM analysis revealed that phase of illness
was not significantly related to the amount of parental contact in
terms of intercept, linear slope, or quadratic term for the NFL sample.
The interaction terms for the quantity of parental contact and age
were as follows: intercept: t = -0.75 (p = .45); linear slope: t = 0.02
(p = .98); quadratic term: t = 0.17 (p = .87). Three hypotheses were
proposed in relation to normative patterns of family interaction, and
follow the same form as those proposed for the age categories.
Figure 35 presents the mean change trajectories in the Quantity
of Parental Contact for all three phases of illness. The phases of
illness are defined as early (5 years of illness or less);
192
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Fi gura 34
MEAN CHANGE TRAJECTORY FOR AGES 17-27
QUANTITY OF PARENTAL CONTACT
■NO FAMILY RESIDENCY- SAMPLE (N«117)
5 1 2
1 2 3 4 5 6 7
MEAN CHANGE TRAJECTORY FOR AGES 28-39
QUANTITY OF PARENTAL CONTACT
■W O FAMILY RESIDENCY" SAMPLE (N=117)
5 1 2
z 10
T W E P E R IO D S
2 3 4 S 6 7
MEAN CHANGE TRAJECTORY FOR AGES 40-59
QUANTTTY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY" SAMPLE (N=117)
u 1 2
2 10
T M E P E R I O D S
6 2 7 3 S 1 4
1 9 3
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73
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Figure 35
MEAN HLM CHANGE TRAJECTORIES BY PHASE OF ILLNESS
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N=117)
25
20
15
10
5
0
1 2 3 4 5 6 7
■EARLY PHASE
■MID PHASE
■LATE PHASE
H
V O
TIME PERIODS
mid phase (6-15 years of Illness); and late phase (15 or more years
of Illness). Results must be Interpreted with caution due to the
extremely small sizes of the phase of illness subgroups.
Hypothesis 3(b)^ ; Those subjects in the early phase of Illness at
baseline (length of Illness 5 years or less) will show; positive linear,
and/or negative quadratic change over time In parental contact.
Figure 36 displays the Individual change curves for all subjects In the
early phase of Illness (N = 24), while Figure 37 graphs the mean curve.
While the covarlate analysis did not result In significant
differences In quantity of contact based on phase of illness, the rate
and type of change for the early phase of Illness Is as predicted by
Rolland's model, as adapted for schizophrenia. Those subjects In the
early phase of Illness had an overall Increasing mean level of parental
contact over time. The form of the change may be described as a
gradual Increase in contact until a peak was reached at approximately
Time 4, followed by a very gradual decrease. The patterns that
emerge from the data are in the predicted direction and are the first
pieces of Information regarding the testing of this model.
Hypothesis 3(b)., : Those subjects In the midphase of Illness at
baseline (length of Illness 6-15 years) will show: negative linear and/or
positive quadratic change over time In parental contact.
1 9 5
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73
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Figure 36
INDIVIDUAL HLM CHANGE TRAJECTORIES
FOR EARLY PHASE OF ILLNESS (N=24)
QUANTITY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY" SAMPLE (N=117)
H
V O
e n
100
90
80
70
60
50
40
30
20
10
0
-10
TIME PERIODS
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Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figures 38 and 39 reveal the individual and mean change
trajectories for those in the mid phase of illness. Phase of illness was
not significantly related to quantity of contact. In comparison to the
those in the other phases, the change over time may be described as
fairly flat. The mean change trajectory revealed that the small amount
of change present increased over time, peaked near Time 5, and then
leveled off to a higher level than at baseline. The type of change was
not as predicted by the model for this groups of individuals in mid
phase of illness. The results indicate that rather than declining in
amount of contact, this group displays a small increase over time that
only declines a small amount in the final two time periods. The null
hypothesis of no differences in parental contact based on phase of
illness cannot be rejected.
Hvpothesis 3(b)-, : Those subjects in the late phase of illness at
baseline (more than 15 years) will show; positive linear and/or
negative quadratic change over time in parental contact.
Figure 40 presents the individual change trajectories for those
subjects in the late phase of illness, and Figure 41 represents the
mean curve for the group. The null hypothesis of no difference in
parental contact based on phase of illness cannot be rejected, but the
direction and type of change is as predicted by Rolland's model
198
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CD
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Figure 38
INDIVIDUAL HLM CHANGE TRAJECTORIES
FOR MID PHASE OF ILLNESS (N=G4)
QUANTITY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY" SAMPLE (N=117)
z 60
D £ 40
O 10
lO
C O
TIME PERIODS
73
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Figure 39
MEAN HLM CHANGE TRAJECTORY
FOR MID PHASE OF ILLNESS (N=64)
QUANTITY OF PARENTAL CONTACT
to
o
o
NO FAMILY RESIDENCY" SAMPLE (N=117)
13.5
< 12.5
11.5
2 1 3 4 5 6 7
TIME PERIODS
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Figure 40
INDIVIDUAL HLM CHANGE TRAJECTORIES
FOR LATE PHASE OF ILLNESS (N=29)
QUANTITY OF PARENTAL CONTACT
to
o
H
NO FAMILY RESIDENCY" SAMPLE (N=117)
120
100
8
I
u .
0
1
s
a
-20
TIME PERIODS
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Figure 41
MEAN HLM CHANGE TRAJECTORY
FOR LATE PHASE OF ILLNESS (N=29)
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N-117)
20
18
16
14
12
10
8
6
4
2
0
1 2 3 4 5 6 7
to
o
to
TIME PERIODS
adapted for schizophrenia. The subjects in the late phase of illness
revealed a positive mean linear rate of change, indicating that the
mean amount of contact is gradually increasing over time. The form
of the change is negative quadratic, indicating that parental contact
gradually increased until the level peaked at Time 4, and gradually
declined to approximately baseline level.
Summarv of Phase of Illness Hvootheses: The HLM covariate
analysis did not result in statistically significant differences in the
quantity of parental contact based on phase of illness. But those
individuals in the early and late phase revealed change patterns
consistent with those patterns hypothesized by the model.
Hvpothesis Testing of Aae Bv Phase Interaction: Familv
Svstems/lllness Model Adapted for Schizophrenia fMathiesen)
Hvpothesis 3(c), : Based on the current adaptation of Rolland's
model, there will be a significant phase of illness X age-linked
developmental stage interaction predictive of parental contact for
community-based individuals diagnosed with schizophrenia.
Overall, the HLM analysis did not reveal a significant interaction
between age and phase of illness. The interaction terms for the age X
phase interaction were: intercept: t = 0.12 (p = .91); linear slope:
t = 0.02 (p = .98); quadratic term: t=-0.67 (p = .50). Figure 42
203
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73
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Figure 42
MEAN HLM CHANGE TRAJECTORIES BY AGE AND PHASE:
QUANTITY OF PARENTAL CONTACT
NO FAMILY RESIDENCY" SAMPLE (N=117)
o
o
25
I
O .
O
<
a
1 2 3 4 5 6 7
-♦-17-27 EARLY
-*-1 7 -2 7 MID
- A - 28-39 EARLY
- X - 28-39 MID
H K -28-39 LATE
— ♦ — 40-59 EARLY
-+-40-59 MID
— 40-59 LATE
( O
o
TIME PERIODS
presents the mean change trajectories by age and phase. However,
there were some interesting findings relevant to this emerging model.
All possible combinations of age and phase were constructed
from the HLM estimates, resulting in eight categories: early phase,
ages 17-27 (N = 15), ages 28-39 (N = 7), and ages 40-59 (N = 2); mid
phase, ages 17-27 (N = 13), ages 28-39 (N =46), and ages 40-59
(N = 5); and late phase, ages 28-39 (N = 19) and ages 40-59 (N = 10).
No subjects were in the late phase at age 17-27. Caution must be
used in interpretation of the results due to the small sizes of some of
the categories.
The two categories that did not follow the general negative
quadratic trend over time were those aged 28-39 in the early phase of
illness, and those aged 40-59 in the mid phase of illness.
The age 28-39, mid-phase group showed increased parental
contact which peaked at a much higher level than other categories of
subjects, and declined to a slightly higher level than their mean
baseline level of contact. The age 40-59 group declined in amount of
contact until Time 4, and then gradually increased to the highest mean
level of all groups at Time 7. The remaining six groups displayed a
slight negative quadratic trend, with little if any linear component.
Their baseline levels of contact were approximately the same as at
Time 7. The ages 40-59, early phase group maintained the lowest
205
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levels of contact, while those aged 28-39 in late phase had the highest
levels of the six similar groups.
Figure 43 presents the changes In parental contact at three
phases of the illness. Each phase contains the mean curves based on
age categories. Figure 44 presents the changes in contact for the
three age categories. Each age category contains the mean curves
based on the phase of illness.
2 0 6
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..f
Figure 43
MEAN CHANGE TRAJECTORIES IN EARLY PHASE
QUANTITY OF PARENTAL CONTACT
"NO FAMILY RESIDENCY- SAMPLE (N=117)
35
t 30
£ 20
O IS
z 1 0
17-27 EARLY - « - 2 M 9 EARLY - a - < 0 -53 EABlT ]
2 3 1 S 4 8 7
T W E P E R IO O S
MEAN CHANGE TRAJECTORIES IN MID PHASE
QUANTITY OF PARENTAL CONTACT
■NO FAMILY RESIDENCY SAMPLE (N«117)
o 2 0
K IS
> 10
17-27 MID 40-59 MID
7 2 3 5 6 1
TIME PERIODS
MEAN CHANGE TRAJECTORIES IN LATE PHASE
QUANTITY OF PARENTAL CONTACT
-NO FAMILY RESIDENCY SAMPLE (N=117)
O 14
S 10
40-59 LATE
2 3 5 1 4 6 7
TIME PERIODS
2 0 7
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figue* 44
MEAN CHANGE TRAJECTORIES FOR AGES 17-27
QUANTITY OF PARENTAL CONTACT
•NO FAMILY RESIDENCY- SAMPLE (N=117)
O 14
2 1 2
K 10
17-27EARLY -# -1 7 -2 7 M io j
2 1 3 4 S 6 7
TMEPERIOOS
MEAN CHANGE TRAJECTORIES FOR AGES 28-39
QUANTITY OF PARENTAL CONTACT
•NO FAMILY RESIDENCY- (N=117)
K 20
O IS
Z 10
28-39 MID -0 -2 8 -3 9 LATE j 28-39 EARLY
S 7 6 2 3 4 1
TWE PERIODS
MEAN CHANGE TRAJECTORIES FOR AGES 40-59
QUANTITY OF PARENTAL CONTACT
•NO FAMILY RESIDENCY- SAMPLE (N=117)
S 25
u 20
K IS
> 10
•40-59 EARLY 40-59 MID 40-59 LATE i
2 3 4 5 6 7
TIME PERIODS
2 0 8
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D. SUMMARY OF RESULTS
Aim 1: The first aim of the study was to describe the amount
and patterns of change in the quantity and quality of parental
involvement.
Raw Scores: There was a great deal of contact with
parents for this community-based sample, as mean parental contact
levels ranged from 1.5 to 2.6 contacts per week, sustained over a
three-year period. All the dependent variables revealed wide individual
variation over time, as evidenced by the graphs of the raw scores.
HLM Curves: The mean intercepts for the quantity of
parental contact revealed substantial contact occurred for the entire
sample and for those not living with family. Those who moved
between family and community residence at some point during the
study had the highest average amount of contact at baseline.
Concerning the quality of family network relationships, the mean
baseline levels for the complete sample, the NFL and the SFL sample
were just below the mid point on the scale, indicating a relationship
characterized at baseline as limited interpersonally and with very
limited contact. The level of satisfaction with family relationships at
Time 1 was very close to the mid point on the scale for all three
samples, indicating moderate levels of satisfaction. The SFL sample
had the highest mean score. Finally, the level of independence from
209
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family was reported at baseline to be above the mid point on the scale
for both the entire sample and the NFL sample, with the SFL sample
reporting the lowest mean level of independence.
The mean HLM change curves for the entire sample in quantity
of parental contact, the quality of family network relationships, and
the level of independence from the family had significant curves very
similar in shape: a gradual increase over time that peaked around 18
months into the study, then a gradual decrease. For those who spent
time living with family, a significant decline in the satisfaction with
their family relationships emerged over time. Subjects in both the
entire sample and the non-family residency sample reported an overall
increase in the level of independence from family over time, combined
with a gradual increase and then decrease.
Differences Due to Familv Residency : The second part of
Aim 1 was to determine if family residency was systematically related
to the quantity and quality of parental involvement. Those individuals
who never lived with family had little change over time in the quality
of their family network relationships, while those moving in and out of
the home showed a pattern of gradual increase, followed by a gradual
decrease in the quality of family network relationships.
Aim 2: The second aim was to explore possible systematic
differences in the quantity and quality of parental involvement over
210
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time based on the type of treatment, gender, racial category, and age
of onset.
Treatment intensity: The quantity and quality of parental
involvement were not significantly related to the intensity of the
psychosocial rehabilitation program. But a very important and
revealing trend for the NFL subsample showed that those in the low
intensity treatment group showed little change over time in amount of
parental contact, while the group in high intensity treatment had
higher levels of parental contact at all time points, which increased to
a peak and then declined.
Gender: No significant changes in the quantity or quality
of parental involvement based on the subject's gender were found.
Racial Cateoorv: The covariate analysis revealed that
baseline quantity of parental contact for group with some family
residency varied significantly according to racial category, and the
differences held across time. Caucasians reported the highest levels at
baseline, followed by African Americans, Latinos, with the lowest
amounts for the Asian and Other category. Data regarding the Asian
& Other category must be only for descriptive purposes due to the
extremely small sample size. There was also a trend toward
systematic differences based on race in baseline levels of
independence from family for the entire sample.
211
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Age of Onset: The linear slopes in the quality of family
network relationships and the level of independence from family were
significantly different based on the age of onset of illness. For both
the entire sample and the subsample of non-family residency subjects,
earlier onset was significantly related to increasingly better family
relationships. Earlier onset was also significantly related to declining
levels of independence from family for the entire sample, with a trend
present in the non-family residency group.
Aim 3: The final aim of the study was to test hypotheses based
on psychosocial developmental models. Hypotheses were posed to
determine if normative age categories, phase of illness, or the
interaction of age and phase were predictive of levels of parental
contact.
Age: As expected, the observed fluctuations in the
quantity of parental contact were not consistent with those predicted
by normative age categories. The patterns of change in quantity of
parental contact (a gradual increase which peaked around 18 months
followed by a decrease) were very similar for all age groups. Although
not statistically significant, the direction and type of change in the
quantity of parental contact for the age 28-39 group was consistent
with the hypothesis based on the normative model.
2 1 2
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Phase of Illness: The observed fluctuations in parental
contact were not statistically significant based on phase of illness.
But the data revealed that the mid phase was very stable in terms of
quantity of parental contact, while the early and late phases showed
increases followed by declines. Those subjects in the early and late
phases of illness, while not statistically significant, had levels of
parental contact consistent with the hypotheses based on Holland's
model for the respective phases of illness.
Interaction of Age and Phase: The interaction terms of the
adapted model were not statistically significant, but graphs of the
changing levels in the quantity of parental contact for all possible
subgroups based on age and phase were complex and revealing. Those
aged 28-39 and in the early phase of illness, and those aged 40-59
and in the mid phase of illness had very different patterns of change
than all other combinations of age and phase, and displayed changes
in the quantity of parental contact that were opposite from each other.
These findings provide some support for the utility of the adapted
model.
2 1 3
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i
t
t _
V. DISCUSSION
Studies of schizophrenia have demonstrated the powerful effect
of the family on the course of illness. While some aspects of family
Interaction, such as Expressed Emotion (EE) have been Identified as
affecting the course of Illness (Brown, BIrley & Wing, 1972; Vaughn &
Leff, 1976; Vaughn et al., 1984; Leff et al., 1982; Goldstein, 1978;
Anderson et al., 1980; Hogarty et al., 1991; Falloon, 1984; McFarlane
et al, 1993;), other researchers have conceptualized a bidirectional
process which may profoundly affect the family as well (Strachan,
1989; Goldstein, 1995). However, little research has focused on the
large numbers of Individuals who do not live with family. It has been
estimated that two-thirds of chronically mentally III persons live apart
from family (Tessler, 1982), and 50-90% maintain family contact
(Anthony and Blanch, 1989; Brekke & Mathlesen, 1995).
In addition, researchers have emphasized the need for
longitudinal studies to map the changing patterns of illness and
sociocultural factors that may Influence Its course (ClompI, 1987;
Wynne, 1988; Carpenter et al, 1990; GAP, 1992; Belitsky &
McGlashan, 1993).
This study represented an attempt to address the need for
thorough longitudinal description of the changing patterns of family
involvement for Individuals living in the community, both those who
214
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lived with family and those who lived exclusively in the community
over the three year study period. The study provided a beginning look
at the nature of contact with parents for those in community-based
treatment.
Researchers have also emphasized the need for a developmental
perspective that would allow individuals and families to be viewed in a
normative context (GAP, 1992). This study addressed the need for
more complete models that help to conceptualize the complexity of
psychosocial factors in schizophrenia. A psychosocial model
developed primarily for chronic physical illness (Rolland, 1994) was
adapted for schizophrenia (Mathiesen, manuscript in preparation).
This study also presented an initial test of hypotheses based on
individual and family developmental processes. Understanding the
individual variation that exists in regard to family involvement is crucial
to treatment planning over the life span as relationships and
developmental stages change. This is an important step for families,
clinicians, and researchers as we attempt to move beyond description
of the illness, and strive to develop models for understanding the
disorder.
2 1 5
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A. Major Findings
1. The Quantity & Quality of Parental Involvement Over Time:
The study was the first attempt to document the changing patterns in
the quantity and quality of parental involvement for a community-
based sample of persons diagnosed with schizophrenia.
The raw scores of the four dependent variables dramatically
revealed the degree of heterogeneity present over time for this sample.
The variables which measured the quality of parental involvement
appeared to be far more variable over all, as few subjects displayed
stable scores over time. There were very large standard deviations
for each of the four dependent variables. Patterns of change were
often obscured by the fact that many scores tended to "mirror" each
other: i.e., low scores were offset at the same time point by high
scores.
There has been very limited attention in the literature regarding
parental contact for community-based individuals (Anthony & Blanch,
1989; Carpentier, 1992; Brekke & Mathiesen, 1995), and virtually no
information longitudinally. Regarding the amount of contact with
parents in the current study, many of the subjects had scores that
changed little over time, while other subjects showed wide
fluctuations in the level of contact over time. It is notable that the
amount of total parental contacts at any time period (initiated by either
216
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parents or subject) ranged from 0 to 175, with means across time
periods ranging from 1.6 to 2.5 contacts per week. This a substantial
amount of weekly contact, especially when seen in the context of the
nature of the illness and considering that the rate was sustained over
three years. The mean quantity of parental contacts increased
gradually over time, and then began to decrease.
In addition to the information the data offer to families and
clinicians, the raw scores have implications for research, as this stage
of the analysis was important in visualizing the level of variability in
the measures, and identifying extreme outliers that existed. Yet due
to the amount of individual variation, raw scores are difficult to
interpret. The HLM procedure, which incorporates individual variation
into the analysis using both the individual's existing data and the
group's data, advanced the understanding of these data.
The HLM intercept terms of the unconditional model (no
covariates included) revealed that at baseline, the subjects maintained
substantial contact with their parents when they were not living in the
family home, and reported moderate levels of independence from their
family. The group that moved between family home and the
community for any portion of the study had higher mean contact levels
at baseline, and lower mean levels of independence from the family.
Over all three samples (entire sample, NFL, and SFL), the mean scores
217
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in terms of the quality of their family network relationships were below
the mid point on the scale, indicating a limited interpersonal
relationship with little contact and some reciprocity. Finally, the
subjects in all three samples reported moderate satisfaction with their
family relationships at baseline, with mean scores falling close to the
mid point of the scale.
In terms of variation over time, the overall mean form of change
in the quantity of contact with parents, quality of family network
relationships, and level of independence from family was a significant
negative quadratic slope. This negative quadratic slope can be
described as a gradual increase in the amount of parental contact
which peaked at Time 4 (1 8 months after baseline), and then gradually
decreased until the end of the study period. At the end of the study,
the mean level of contact was very slightly lower than the baseline
measurement.
The HLM analyses provided interpretable patterns of change for
each individual, as well as group trends. Researchers, clinicians, and
administrators now have the first longitudinal empirical evidence
regarding changing patterns of parental contact for a community-based
sample. These results provide the foundation for further exploration
of the continuing role of the family in the lives of those who are
diagnosed with schizophrenia. For clinicians, these results provide a
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basis for preparation of the family and the individual as to the possible
variation in the frequency and character of parental involvement. For
some families, these results may verify what they have experienced
with their own family members: the level of family involvement is
variable. For other families, especially those with a newly diagnosed
family member, these results may offer very useful guidelines as to
levels of contact and the potential magnitude of change over time.
2. The "No Familv Residencv" Sample:
This study was also one of the first systematic longitudinal efforts
made to explore the family involvement for those diagnosed individuals
who did not reside with their family. First, it should be noted that for
this urban sample, 81 % (N = 140) did not live with family for any
period of time during the study, while 19% (N = 32) moved between
community and family residency. This is substantially higher than the
estimate made in the early 1980s, and may be due to the fact that the
current study is made up entirely of persons with schizophrenia, rather
than a range of mental illnesses.
Research has demonstrated that family communication patterns
influence relapse rates (Goldstein, 1978; Leff, 1987; Anderson et al.,
1980; Falloon, 1984; Tarder et al., 1988; McFarlane, 1993; 1996;),
and it is vital that research efforts address the contact that continues
to occur with the family when the individual is not in residence. One
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cross-sectional study reported that those not living with their family
had an average of 18 hours of contact per week and called for
longitudinal research regarding changes in contact (Carpentier et al.,
1992).
This study has provided empirical evidence of the magnitude
and shape of changing quantity and quality of parental contact for
those living outside the family home. Subjects who did not spend any
days in family residency had a mean of 1.6 contacts per week with
parents at baseline, a particularly notable amount considering the
nature of the illness. When analyzed as a separate group, there was a
trend that revealed a gradual increase, followed by a gradual decrease
in the quantity of contact and the quality of family network
relationships, evidence that many individuals do remain in contact with
their parents, and that the patterns change over time. The level of
independence from the family changed significantly over time in the
same form as the quantity of contact and the quality of family
relationships. In addition, when family residency was used as a
covariate with the full sample, the significant differences between
those who lived with their parents and those who did not were
revealed. Those living with family at any point during the study
showed a gradual improvement in the quality of family network
relationships, followed by a gradual decline, while those not living with
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family showed comparatively little change over time in the quality of
their relationships
These findings have implications for research, as it is clear that
the timing of a measurement will have an impact on the results. If
subjects were only measured at one point in time, it would be
impossible to determine which part of a changing cycle was being
measured. The current study reinforces the need for longitudinal
research regarding these complex relationships.
Clinically, the results regarding those not living with their family
are important to consider. Two studies have found that positive family
interactions were associated with improved quality of life for subjects
(Halford et al., 1991; Sullivan et al., 1991). In addition, Brekke &
Mathiesen's (1995) study found that the two-thirds of the sample who
did not live with their family scored significantly higher on global
functioning and on other psychosocial variables than those who moved
between their family home and community residence. Among subjects
who did not live with their families, those who remained in contact
with their families scored higher than those without contact on
measures of the number of days worked and overall role functioning
(Brekke & Mathiesen, 1995). The decline in the three variables of
quantity of contact with parents, the quality of family network
relationships, and the level of independence from family at
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approximately the same point in the study may signal an important
point for intervention efforts for those living away from their family.
Understanding the patterns and monitoring changes will alert clinicians
to potential difficulties, and help to prepare family members for
change.
For family members, it is important to have information that
may predict a deterioration in family relationships, so that the
intervention intensity or a different use of family may be used to
promote improved quality of life over time. The results from this study
will help clinicians and families to visualize a beginning general
structure of family involvement over time which can be modified
according to individual and family differences to improve outcomes.
3. First Empirical Test of Rolland's Model & the Adapted Model:
This study was the first attempt to: 1- adapt a model primarily
focused on chronic physical illness to the characteristics of
schizophrenia (Rolland, 1994); and 2- test hypothesized relationships
based on psychosocial developmental models of the individual, family
and illness. It represents a sizable step toward the conceptualization
of the overwhelming complexity of family dynamics that exists at any
time between a person with severe mental illness, the family, and the
presence of the illness itself. The model then extends this complex
interplay over the life span to incorporate the essential element of
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time. In addition, as these initial attempts were based on those who
did not live with their families, the study has advanced the
understanding of this large segment of the diagnosed population
beyond description of variables, and into the realm of testable
hypothesized relationships.
Rolland's (1994) psychosocial developmental model had not
been empirically tested. The first step toward describing systematic
changes in family involvement for those individuals diagnosed with
schizophrenia and living in the community was to determine if the
hypothesized fluctuations present in normative family development
were present in the sample that did not live with their family over the
duration of the study.
The results of the study provided some empirical support for
this emerging model. The support is revealed in several ways: 1-the
predictions based on normative age categories were not predictive of
parental contact, indicating that other factors are related to the
fluctuations in contact; 2-fluctuations in parental contact based on
the phase of illness, although not statistically significant, were in the
form and direction predicted by Rolland's model for those individuals in
the early and late phase of illness.
The expectation was that the patterns of parental contact based
on normative age categories would not be as hypothesized by the
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normative model. Retaining the null hypothesis, then, was interpreted
as an indication that patterns of parental contact for those individuals
and families afflicted with the effects of schizophrenia did not follow
patterns of contact predicted by normative age categories.
For the individuals aged 17-27, the direction of the mean curve
was in the opposite direction hypothesized according to the normative
model. Normal family developmental processes would suggest a
decreasing level of contact, which would eventually level out and
begin to slowly increase. This youngest group displayed a small
increase over time in the amount of contact with parents, followed by
a decrease.
It might have been anticipated that due to their young age and
the imposition of a chronic and severe mental illness, there may be a
tendency for enmeshment with the family structure and perhaps
extreme levels of dependency in terms of family contact. This would
be in keeping with the hypothesized "press" of the illness, greatest at
the point when individuals without the impact of the illness would be
most free of the family and beginning to establish themselves in the
external world. But the data show that for this sample, although there
is a gradual increase in contact with parents over time, there is also a
gradual decline, and that the increase is rather small in magnitude.
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The age 28-39 group was hypothesized by normative family
development to be showing significant increases in the amount of
contact with family, followed by the beginnings of a decline. Although
this group of persons with schizophrenia showed very little mean
change over time, the form of the change in this age range was most
closely related to the normative model. There was indeed a gradual
increase, followed by a decrease. The results for this sample indicate
that this age group was most stable in terms of their mean quantity of
parental contact.
The age 40-59 group displayed the lowest mean baseline level
of parental contact of all three groups, which increased steadily over
time, declined very slightly, and ended the study on a higher level
than the other two groups.
In summary, the results indicate that fluctuations in the quantity
of parental contact do not conform to normative age hypotheses.
In terms of implications for research, the results have provided a
baseline construct on which to build future investigations, and
highlight the need to explore other aspects of the individual in the
search for systematic change in family relationships. A portrait has
begun to emerge of those individuals who have built lives apart from
their families, and continue to remain in contact with them. How
those changing relationships with family members are related to other
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aspects of their lives, such as their psychosocial functioning and
symptomatology, will be the target of future investigations.
In terms of clinical implications, the fact that age alone did not
predict systematic variation in the amount of parental contact
suggests the need to piece together a picture of individuals living in
the community: how is family integrated into their lives quantitatively
and qualitatively, and how can family relationships be used to build on
the individual's strengths?
The second aspect of the adapted model to be tested is the
relationship between quantity of parental contact and the phase of
illness. According to Rolland's model (1994), the fluctuations in
parental contact for this sample should be related to the phase of
illness.
The HLM analysis revealed that although there was wide
variation in individual change over time, phase of illness was not
systematically related to the type of change in quantity of parental
contact. The form of variation was similar in all three phases of the
illness.
Those individuals in the mid phase of illness showed the
smallest amount of change in parental contact. Most subjects showed
little change and had a fairly low level of contact over time. The very
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small mean increase that was present in parental contact peaked at
about Time 5 (30 months after baseline).
The individuals that did not closely follow the group trend are
worthy of further investigation, to determine if another aspect of their
illness or environment is related to the generally higher initial levels of
contact. It is noteworthy that even the outliers tend to have fairly
stable trend lines over time, and that the primary difference appears to
be in their initial status, rather than in a drastically different form of
change.
The individuals in the early and late phases of illness had
patterns of change in the hypothesized direction and form. The two
groups showed similar arcs as they gradually increased, peaked, and
gradually decreased in the amount of contact with their parents. The
individuals in the early phase had a higher level of parental contact at
baseline and remained substantially higher than those in the late phase
at all data points. Future studies should build on these patterns, as
they have offered essential information regarding the patterns of
parental contact for a sample that did not live with family over a three-
year period. Little is known about the family networks of those living
in the community, and how the family is utilized or accessed by
individuals at different stages of their illness.
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s
• i
Rolland's model (1994) as adapted for schizophrenia
(Mathiesen, manuscript in preparation) predicted an interaction of age
and phase. The HLM analysis did not reveal a significant interaction
term for age and phase. Although it is clear from the individual
change trajectories that a great deal of change is occurring,
statistically significant differences in the type of change based on both
age and phase were not detectable with these data. Nonetheless,
there were intriguing patterns of change that varied by age and phase
groupings that provide a basis for future investigations and some
important support for the adapted model (Mathiesen, manuscript in
preparation).
Eight subgroups were created by the three age categories and
the three phase categories, with no subjects falling into the age 17-27,
late phase group. Six of the eight subgroups displayed similar and
fairly stable patterns of change over time. The two groups which did
not follow the patterns of the other six were; ages 28-39 in early
phase, and ages 40-59 in mid phase. Those in the age 28-39 group in
early phase of illness had similar levels of contact at the start of the
study, but showed a very high arc over time which peaked at Time 4
with nearly twice as many contacts as any other group. The group
gradually declined to a slightly higher level than baseline.
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The individuals in the age 40-59 group in mid phase of illness
displayed a mirror image of the age 28-39 group in early phase. Their
baseline levels of contact were close to each other, but the age 40-59
group declined to a low point at Time 4, and began to increase until
the end of the study, ending at a higher level than all other groups.
Rolland's developmental model hypothesized that those in a
primarily centrifugal stage of individual development such as age 17-
27 (early adult to beginning of the age 30 transition) would experience
the early phase of illness as more disruptive to Individuation than those
in the age 30 transition up to the beginning of the midlife transition
(age 28-39) (Rolland, 1994). Yet the results suggest that within this
sample, those who were in the age 28—39 age group and in the early
phase of illness had much higher levels of contact with their family
than the younger group. This may be interpreted as representative of
the dynamic of the centripetal "press" of illness, which can derail
developmental processes for the individual and family.
The graphed change curves, although not statistically
significantly different from each other based on an age by phase
interaction term. Indicate that contrary to expectations, those aged
28-39 in the early phase had much greater levels of family contact
over time than those aged 17-27 in the early phase. Assessment of
the psychosocial functioning of the individuals in future studies will
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answer questions regarding the impact of the increased parental
contact.
These data have clinical and research implications regarding the
contact with family at different ages and phases of the illness.
Researchers have been called upon to identify which phase of illness is
best for treatment (Bellack & Mueser, 1993; GAP, 1992). In this
study, it appears that, on average, those in the mid phase of illness
had little change in the quantity of parental contact. It may be that
this is further evidence that the mid phase of illness represents a
"window of opportunity" for intervention, as the most chaotic and
stressful environmental stressors, as well as the physiological
manifestations of the illness, may be at a plateau. Perhaps more
parental contact needs to be encouraged at mid phase, when
individuals and families are not overwhelmed by the disruptions of the
crisis phase of illness.
Future analyses are needed to determine if other aspects of
family interaction, such as level of satisfaction or the quality of family
relationships, are related to the mid phase of illness. In addition, the
emerging model offers increased opportunities for clinicians to develop
ongoing relationships with families, and to assess their developmental
stage. These data can serve as a basis for guiding intervention
strategies and focusing family inquiry.
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The emerging model has implications for families, as it
recognizes the importance of the family in a non-blaming stance. It
offers an integration of many psychosocial variables that may help to
increase their understanding of the illness of their family member.
Families can conceptualize a "normal" family response to the illness in
terms of fluctuating family relationships, and explore their efforts to
reorganize the family to adapt to the presence of the illness (Wynne,
1986).
Caution must be used in when evaluating the results, however,
as the sample is constricted to only those without family residency. It
may be that those who moved between family home and the
community would display patterns of family involvement more
consistent with hypothesized age and phase interactions, a topic for
future investigations.
The data are important as researchers build a knowledge base
regarding the large numbers of individuals who live in the community,
and yet remain in contact with their family. It is important to
understand how family involvement is related to their functioning
levels, as well as their symptomatology. The large increases in
parental contact may be independent of symptom levels, or they may
be related to impending relapse.
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Future studies need to begin to integrate family involvement
levels into the complex interaction of individual, illness, and treatment.
Why does the quantity of parental contact begin to decline? What is
the relationship of the decline to levels of psychosocial functioning:
do the same relationships in the quantity of parental contact observed
in the model testing occur in the quality of parental involvement?
Future investigations are needed which collect in-depth data from
families regarding their developmental stage, why contact has been
maintained or not, and how the relationship has changed over time.
The family has had a demonstrated impact on the individual
diagnosed with schizophrenia, and it is crucial to understand how the
Impact is manifested over time for the great numbers of persons who
do not live with family. In addition, the family is fundamentally
impacted by the illness. It is crucial to understand how that impact is
experienced at different phases of the illness and at different points in
the family life course, whether or not the family member is in
residence. Only then can researchers, clinicians, and families make
fully informed projections regarding components of treatment, and
how the strengths of families may be utilized for improved outcomes.
4. Age of Onset: The rate of change over time (linear slope) in
the Quality of Family Network Relationships differed significantly for
the entire sample depending upon the subject's age of onset. The
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g
sample had a steadily increasing mean rate of improvement over time,
as well as a significant inverse relationship to age of onset.
These results indicate that overall, the later the age of onset,
the poorer the quality of family network relationships. Those who had
an onset of illness at age 40 and over showed a marked negative
linear trend over the three year study period. The other three age
groups graphed (age 19 and under, age 20-29, and age 30-39) were
closer in form to each other. All groups had baseline measurements
that were closely clustered together, but the slopes began to diverge
at approximately 1 year into the study.
The subsample that never lived with family members displayed a
similar pattern of change based on age of onset. The entire NFL
subsample had a significant positive linear change that was small in
magnitude. In addition, the linear change in the quality of family
network relationships varied significantly based on age of onset: the
later the age of onset, the lower the quality of family network
relationships. The graphed results used age categories of 8-19, 20-
29, 30-39, and age 40 and over. When the significant coefficient is
used to compute linear terms, those in the age 30 and age 40 +
categories displayed a decline over time, as opposed to the small
increase shown for the earlier age categories.
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These results add to the information accumulated in this study
regarding those who never lived with family during the study duration.
Research has indicated that the course of treatment may be different
based on age of onset (DeLisi, 1992), and that early and late
categories of onset are important inclusions for research (McGlashan,
1988; Jeste, 1993). We now have some evidence from the current
study that the patterns of parental involvement for this community-
based sample also differ based on age of onset. In addition, the same
form of change held for those who never had family residency during
the study.
Accumulating information regarding community-based subjects
is important for clinicians in treatment planning, and in providing
families with projections of how the ill family member may change in
relation to the family over time.
Castle and Murray (1993) reported a review of studies that
estimated a mean of 23 percent of schizophrenic subjects had a later
age of onset (over age 40) (Harris & Jeste, 1988). The later age of
onset subjects in the current study is only 1.2% (N = 3) for age 40 and
over. For onset at age 30 and over, the percentage rises to 7.6%
(N = 17). The overall mean for the total sample is 22.11, an
expectable age of onset. Due to the small representation of late onset
subjects, the results must be interpreted with caution.
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The Level of independence from Family also revealed significant
differences based on age of onset. For the total sample, the younger
the age of onset, the lower the level of independence from family. For
the NFL subsample, the linear term was near significance in the same
direction as the entire sample. This is the reverse of the findings
found in terms of the quality of their family relationships, where lower
age was related to higher quality.
In terms of independence, it makes intuitive sense that the
earlier a person experiences the developmental disruption of the onset
of schizophrenia, the fewer independent activities and
accomplishments apart from family may be present. This is consistent
with studies addressing the age of onset in terms of the course of
illness, which suggest that "the later the onset, the less likely the
early (defective brain] developmental process is present" (DeLisi,
1992, p.212). Increased levels of brain defects may result in
increased dependence on family. For this sample, the younger the age
of onset of illness (and potentially the greater the defective brain
development), the more dependent upon family, but also the better the
quality of family network relationships. The inclusion of age of onset
permits a systematic approach for research designs that may illuminate
aspects of the course of illness.
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in summary, the age of onset as a covariate has suggested
differences in the course of the quality of family relationships, as well
as in changes in the level of independence from family. Earlier ages of
onset were significantly related to an increase in the quality of family
relationships, and also to a decreased level of independence from
family. It appears that for this sample (including those who had no
days of residency with their family), subjects had more reciprocal and
positive relationships with their family if they had an early age of
onset. In addition, the entire sample revealed that an early age of
onset led to a more dependent relationship with the family. These
results highlight the complexity of family interaction, when combined
with the variables that are related to the course of illness. Additional
studies are needed to investigate the relationship of dependency and
quality of family network relationships to the psychosocial functioning
of the individual.
In terms of research implications, the significant results related
to age of onset pose intriguing possibilities regarding the adaptation of
the model. Rolland (1994) used the type of onset in the typology of
illness, and the adapted model included age of onset as a fundamental
aspect of the illness course. With respect to the results of the current
study, it is now known that normative age categories were not
predictive of parental contact. One possible explanation is that when
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the illness is present in an individual, the age of onset becomes a
proxy for the biological age. It may be that the age of onset resets the
developmental clock in a fashion, and that relationships with family
members are fundamentally affected by the onset. Future studies may
discover that substituting age of onset for biological age provides new
insights and predictive power to the model.
5. Increased Contact & Increased Independence: Overall, the
entire sample displayed a significant increase over time in the quantity
of parental contact, as well as an increase in the level of independence
from family. The increases in both variables peaked at approximately
18 months after the study was begun, and then declined gradually
until the end of the study. But the presence of a positive linear trend
for the independence variable indicates that subjects did not return to
the initial status. Subjects reported significantly higher levels of
independence over time, along with the negative quadratic curve
described above. The significant results were present for both the
entire sample and for the NFL subsample, which had no days of family
residency. In other words, the whole sample, as well as the NFL
subsample, showed a pattern of increased contact with their parents
at the same time that they were feeling increasingly independent from
them.
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It appears that the group which never returned to the family
home still had a significant decline in the level of independence from
family after an initial increase. It is particularly important to note that
they did not return to their initial status, but that even after a general
decline, they maintained an increased level of independence above
their starting point. It may be that their ability to sustain themselves
In the community also sustained their feelings of independence.
Clinically, the finding that overall subjects felt increasingly
independent from their family, in spite of increasingly frequent contact
with them, is an unexpected result, and one that is especially
important in terms of family involvement in treatment planning. It is
important as researchers, clinicians, and families attempt to identify
what patterns of contact are beneficial or detrimental, and at what
point in the individual's and family's life span. Some family treatment
models have been directed toward reducing the levels of contact with
parents to minimize potential adverse effects such as dependency.
These data suggest that increased contact does not signal increased
dependency.
Perhaps there is a relationship between maintaining a
consistent level on these variables and maintaining the subjects in
intensive treatment. As no causal link can be established with these
data, leaving treatment may result in a decline in the family variables,
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or vice versa. Perhaps consistent, reciprocal contact with the family
encourages a sense of independence which may influence participation
in treatment. The results contribute important longitudinal information
in the area of family involvement research, particularly for those
individuals who do not reside with family.
6. Similar Patterns of Chance in Quantitv and Qualitv of
Parental Involvement: The results of the study revealed that the
amount of contact with family, the positive nature of family network
relationships, as well as the level of independence from the family
gradually increased and reached a peak after approximately 18 months
for this sample of community-based persons. After this point, there
was a general decline in the three variables until the end of the study.
In terms of the level of satisfaction with their family
relationships, there was no significant linear or quadratic term which
captured the extreme variation present in the raw scores. It may be
that a much more complex curve was needed to accurately represent
subjects' changing level of satisfaction with their familial relationships.
This pattern was notable as subjects were in increasing contact
with their parents, were rated as having an increasing quality in their
family network relationships, and were feeling an increasing sense of
independence, while at the same time their self-reported satisfaction
with family relationships was changing in a pattern marked by such
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variation that a quadratic trend was not significant. This pattern held
for both the entire sample and in near significant trends for the NFL
sample.
For those who moved between family home and community, in
spite of significant improvement in the first 18 months in the quality of
family network relationships, they grew increasingly dissatisfied with
their parental relationships. Even though the relationships were more
reciprocal, they were not reported as more satisfying.
In regard to research implications, the results may be interpreted
to indicate a surprising similarity in the nature of mean change curves
in both quantity of parental contact and aspects of the quality of
parental involvement over the study period. Considering the
tremendous amount of variation in the variables, the similarity in
general curve type, as well as in the time points at which scores reach
their zenith, generates interest in what factors may be related to the
patterns of change. For example, it may be that aspects of the
individual's psychosocial functioning may be influencing the quantity
and quality of parental contact.
An additional implication is that while it appears that both the
quantity and quality of parental involvement are needed to characterize
the complex family relationships, the subject's satisfaction level may
be at odds with other measures over time. This could be because a
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more complicated curve Is needed to accurately describe the variation
in satisfaction levels. These results have importance for families, who
may judge their own actions in terms of the level of satisfaction
reported by their ill family member. These data will allow clinicians to
help families understand the complexity of the individual's perception
of the family relationship, and that very likely the level of satisfaction
will change dramatically over time.
B. Additional Noteworthv Findings
1. High Intensitv Treatment: Covariate analysis revealed that
for the subsample that did not live with family (NFL), the high intensity
treatment group had substantially more contact with parents at all
time points than the low intensity treatment group. This was
represented as a trend toward systematic differences in the quadratic
terms for Quantity of Parental Contact, based on treatment group.
In view of the differences in the course of treatment that
research has shown in regard to family involvement, the evidence that
high intensity treatment appears to be related to increased and
sustained levels of parental contact is important information. Further
investigation needs to assess whether this increased contact at all
time points (followed by a gradual decline) for the high intensity
treatment group is related to their functional levels. An alternative
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explanation may be that because this subsample never lived with
family, there is increased contact as a compensatory mechanism. It is
important to identify specific levels of contact as they relate to
aspects of treatment, such as the consistent finding for three of the
four dependent variables that at 18 months, improvement begins to
decline. Note that the analysis is based on those who remain in
treatment at each time point.
The trend toward significance for the NFL group (p = .09) helps
to guide our increased understanding of the relationship between
family involvement and intensive and nonintensive community-based
treatment. In terms of clinical implications, we now know that for this
sample of individuals who never lived with family, as the intensity of
treatment increased, the quantity of parental contact also increased.
In addition, after the initial increase in contact, there was a gradual
decline over time.
Treatment planning must incorporate the needs of the large
numbers of individuals living apart from their families. Researchers
have noted the potential strengths and interests the family brings to
rehabilitative efforts (Lefley, 1987; Winefield et al., 1994; Hyde et al.,
1993). The involvement of the family in treatment will help to identify
and establish effective family roles in the context of separate
residency. This relationship between treatment intensity and quantity
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of parental contact for individuals living apart from family generates
new questions and comparisons for future studies.
2. Racial Categories: The only significantly different parameter
based on racial categories was the intercept term for the SFL
subsample when measuring the amount of parental contact. This
sample may represent a substantively different group in terms of
family relationships just by virtue of the fact that they did have periods
of living with family. But the intercept difference is an interesting
result, given that the sample did not reveal significant differences in
illness severity and amount of hospitalization at baseline, and all were
medication compliant. These significant initial differences based on
race did not result in different forms of change over time.
The group with the most contact with parents at baseline was
Caucasian, followed in decreasing order by African American, Latino,
and Asian & Other. These findings are in contrast to those of Lin et
al. (1991), who found that Asian families were more intimately
involved in family treatment than Caucasian families. However, Lin's
study did not report whether the subjects in the study lived with
family or not, which emphasizes the need to include the context of the
family residency as an important variable. Caution must be used when
interpreting the results, due to the small SFL sample, especially in
regard to the Asian & Other group.
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There was also a trend for the whole sample (which neared
statistical significance) toward differences in the level of independence
from family over time, based on racial category. On this variable,
Caucasians began the study with the highest level of independence
from their family, followed by African Americans, Latinos, and Asians
& Other. But these initial differences based on racial category did not
translate into different patterns of change over the three year period.
These data contribute to the literature regarding racial
differences in parental involvement for community-based individuals,
and represent important information for families and clinicians as
treatment efforts are increasingly focused on individualized
approaches. The relative lack of significant results based on racial
category in terms of the quantity and quality of parental involvement
has implications for researchers as well. Racial categories must be
reported in terms of family involvement so that we can determine
where differences based on race exist, where similarities are the norm,
and more importantly, how time affects the relationships.
3. Gender: No systematic differences in the types of change
were detected for males and females on any of the variables. There
was a trend for the SFL sample in terms of satisfaction with family
relationships: females remained rather stable over time, while males
showed a trend toward decreasing satisfaction.
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This is important information to be gained regarding this
community-based sample, as prior research has found differential
effects for women in family therapy conducted in inpatient settings
(Glick, et al., 1985, 1990; Haas et al., 1988; Spencer et al., 1988).
Other research supports different patterns for men and women in the
onset, course, and symptomatology of schizophrenia (Wahl & Hunter,
1992).
While the covariate analysis was not focused on the outcome of
treatment, the fact that men and women had similar changes in the
quantity and quality of parental involvement adds to our understanding
of those living in the community, and which client variables are not
systematically related to family relationships. While we may think of
women as being more imbedded in the family than males, the results
with this sample do not provide support for gender differences in the
quantity and quality of parental relationships. Winefield and colleagues
(1993) found that women were seen as more of a burden to family.
Although family burden was not assessed in the current study, no
differences between males and females were observed either at
baseline or over time in the quantity or quality of parental involvement.
So if burden was experienced differentially, it did not translate into a
different pattern of involvement in this study. These data help
families and clinicians avoid assumptions based on gender differences.
245
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C. Strengths
The data were collected with careful attention to providing a
well-distributed sample in terms of important demographic variables.
The resulting sample appears to be representative of other urban
populations. These characteristics are reported in detail, which
contributes to the ability to compare results from other studies.
The instruments used in the study were chosen to minimize
subjective interviewer ratings. The instruments (DIF, CAP, SWL, and
SASH) have been tested and used in previous studies. In addition,
interviewers were continually trained until they reached the strict
training criteria established. The resulting data set represents carefully
collected information on established variables, which maximizes the
ability to make comparisons across studies.
The study provided rich descriptive longitudinal data regarding
the quality and quantity of parental involvement for individuals living in
community. In addition to the much-needed description, the study
tested hypotheses based on a psychosocial developmental model
adapted specifically for schizophrenia, providing the first empirical
investigation of the model.
Finally, the use of HLM as a statistical tool in this study allows
individual differences in patterns of change to be specifically modeled.
The procedure also permits testing of the effects of subject
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characteristics and types of treatment. The graphic display of change
using HLM permits the description of complex relationships, and the
range of response over time. Preservation of unique responses to the
family as the individual ages and moves to different phases of the
illness will build on existing knowledge of the changing course of
illness.
D. Limitations
The study is focused on the level of family involvement for
those diagnosed with schizophrenia. While the data permit complex
analyses and hypothesis testing, collection of data from families would
be an important addition. Family data would permit questions to be
posed which are not possible with the existing information. Family
responses would provide insights as to the levels or lack of contact,
the history of family involvement, the developmental stage of the
family at time of onset, and the degree of disruption of individual and
family developmental goals as a result of the illness.
A related limitation is that parental contact is but one aspect of
family involvement. As the hypothesis testing was the initial test of
the model in any form, it was important to limit this portion of the
analysis to the magnitude of contact, with the understanding that it
represents a discrete portion of involvement with family. Use of other
dependent variables in the descriptive and covariate analyses are
247
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indicative of relationships to be investigated in the future in terms of
the model.
While the use of HLM is certainly seen as a strength, it also has
limitations. There are still many unanswered questions regarding its
longitudinal application when different forms of change are predicted.
The procedure still poses problems when subjects change at different
rates, because the reliability estimates reflect the assumption that all
are changing in the same ways. Violations of the assumptions of
normality have been judged to be nonproblematic (Bryk & Raudenbush,
1994), but it is unclear how far the deviations from normality may be
extended.
In addition, certain portions of the analysis bisected the sample
into one subsample that had some days of family residency, and
another that had no family residency. Further analyses based on these
subsamples often resulted in very small sample sizes, and so those
results should be evaluated with caution and seen as suggestive.
Finally, the model describes family interaction over the entire life
span. The three-year data collection is a powerful strength, as so little
information in this area exists either cross-sectionally or longitudinally.
But again, results must be carefully considered, as a three-year time
period cannot be assumed to be capable of capturing the life changes
that may result for each individual and family.
248
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E. Future Directions
The study has generated many additional questions that may be
addressed in future investigations. Additional study should focus on
how the patterns established in the current study relate to the
psychosocial functioning of the individual. The potential interaction of
patterns of family involvement and functional levels would be very
revealing as to the changing relationship between the illness, the
individual, and the family.
A significant area for future studies concerns collecting data
from family members, as well as those diagnosed with schizophrenia.
Instruments designed to assess family attitudes and attributions, such
as the Camberwell Family Interview (CFI; Vaughn & Leff, 1976) would
enable questions to be asked in regard to the developmental stage of
the family. In addition, comparisons could be made in regard to those
families in transition versus those who were not. What was the phase
of the family life cycle when the individual was diagnosed? The goal
would be to investigate family interaction patterns and the relationship
to psychosocial functioning of their ill family member. What is the
relationship of high stress points for the individual (rehospitalization,
relapse, etc.) and life cycle transitions? Also, what has been the
impact on the individual and family over time in terms of their personal
249
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and developmental goals? What strengths can be mapped and
utilized?
Although there was no intent in this study to examine the
reasons for lack of contact with parents, this is a fruitful area for
future investigations. It would be important to understand the
viewpoint of both subject and parent as to the nature of their
relationship, when contact began to diminish (or increase), and the
reasons for the change.
In addition, data from family members would permit the
investigation of one of the metacharacteristics identified in the illness
typology; the belief system about the etiology of schizophrenia and its
trajectory. What subjective attributions are individuals and families
making about outcome and their level of control over outcome?
Extended and informal family relationships are also an important
area to investigate. What is the role of siblings in the care of the
diagnosed individual? As parents age, siblings may assume an
increasingly supportive role and help their family member cope with
inevitable loss (Adler et al., 1995).
There may be levels of shame or blame experienced by the
family caregivers that cause poor family interactions which may
supersede the anger and hostility measured by Expressed Emotion.
Transgenerational histories of coping with illness and loss, use of
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community resources, and future developmental transitions were
discussed by Rolland (1994) as important aspects to be included in a
comprehensive assessment.
Additional study needs to be conducted which focuses on those
who do not live with family. The current study is one of the few
which specifically addressed the living situation of the subject, and will
provide important baseline data for future studies. One study, which
reported that 22 of 37 patients did not live with family, emphasized
the lack of attention in the literature to families' influences on and
interactions with patients living outside the parental home (Carpentier
et al., 1992). The concept of EE should be examined in this context
to determine its effect beyond the walls of the family home or
hospital.
In addition to collecting data from family members and focusing
on the large segment of the population living outside the family home,
exploration of the mid phase of illness has much potential in terms of
targeting interventions to the specific needs of clients and enhancing
long-term treatment outcomes. The transition from crisis to chronic is
of particular interest. What happens after the second or third
hospitalization is critical to the future trajectory of the individual and
family. Future studies should focus on whether or not families achieve
their developmental tasks, which may dictate whether they can be an
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effective tool for the diagnosed family member. Given schizophrenia
in mid phase, how is high and low family contact related to
psychosocial functioning and severity of illness?
The significant results in the current study based on age of
onset also present some intriguing questions for future research. In
terms of the adapted model, perhaps once the illness is present, the
biological age is not the determining factor in parental involvement. It
may be that the age of onset of illness becomes a better predictor of
family interaction processes.
The results of the current study also indicate that exploration of
the mid-adulthood era is an important avenue. Focusing on this age
group as a theoretical point of transition would enable researchers to
understand what happens biologically, socially, and psychologically
after age 30 (GAP, 1992), using the developmental context of the
adapted family illness model.
How can treatment be best designed to match individual service
needs? An overall goal may be posed to determine phase-specific,
context-specific treatment strategies that will incorporate optimal
family interaction patterns and strengths to improve long term clinical
and psychosocial outcomes.
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Family involvement in rehabilitation: A development model
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