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Research
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Family Involvement by Aging Parents
and Adult Siblings with Individuals with Mental
Retardation Living in Residential Settings
(Marsha Mailick Seltzer, Ph.D.; Marty
Wyngaarden Krauss, Ph.D.)
Statement of Problem and Background
The majority
of persons with mental retardation (MR) live with their families throughout
childhood and well into adulthood. Whereas in the 1970s and 1980s, most persons
placed in community residential settings moved there following years of institutionalization
and limited contact with their families, at the present time there is increasing
placement of adults with MR directly into residential settings after decades
of living with their parents. Often, this placement is propelled by the aging
of the parental generation, although the transition to non-parental care may
precede parental death by many years. Little is known about the extent of parental
involvement after placement, although the complex factors associated with how
older parents of adults with MR plan for the residential future of their son
or daughter has received increased attention in recent years (Essex et al.,
1997; Freedman et al., 1997; Heller & Factor, 1991).
The importance
of this issue is derived from three phenomena. First, because family-based care
is the dominant residential arrangement for persons with MR (Fujiura & Braddock,
1992), there is a sizeable population of families who must eventually decide
how to make the transition from the parental home to a non-parental placement
for their son or daughter with MR. Second, most individuals with MR now outlive
their parents (Seltzer & Krauss, 1994), resulting in a sizeable population
who enter the formal residential service system for the first time well into
adulthood. Third, there are growing waiting lists for residential services within
almost every state (Hayden, 1992), resulting in bottlenecks in service access
and producing even more pointed pressures on families to develop various options
for the future.
In our past
research, we have learned a great deal about the factors leading up to the placement
of adults with MR out of their parental homes. However, to date, no research
has been conducted to document the frequency of contact between aging parents,
adult siblings, and the individual with MR after placement, the quality of these
family relationships after the residential relocation, the likelihood that the
family members will continue to provide any direct or indirect care, or the
consequences of varying levels of family involvement after placement for the
well-being and quality of life of the adult with retardation. These are the
issues that will be addressed in the proposed project.
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Theoretical
models of families and long-term caregiving were used to frame this study.
Research Questions
or Hypotheses
1. what is the extent of family involvement;
2. how have patterns of parental and sibling involvement change during the first
three years after placement; and,
3. what are the factors that predict varying levels of family involvement after
placement.
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This study
is a secondary analysis using data collected at each of the eight points of
data collection. Three domains of data will be analyzed: 1) indicators of the
extent of family involvement, 2) predictors of family involvement, and 3) outcomes
of family involvement.
Sample
This builds
on an ongoing study of 461 aging families who have an adult son or daughter
with MR (Essex et al., 1997; Freedman et al., 1997; Krauss & Seltzer, 1991;
Seltzer et al., 1997). About half of the families live in Wisconsin, while the
other half live in Massachusetts. At the outset of the study in 1988, all adults
with MR lived at home with their aging mother (age 55-85) and father (if alive).
During the ensuing ten years, 124 adults with MR moved out of their parents'
home to a home of their own. Because families continue to participate in our
study after the placement of the son or daughter, we have assembled a longitudinal
data base uniquely appropriate to addressing questions regarding the predictors,
extent and consequences of family involvement after placement. Table 1 portrays
the placement of the adults with retardation during the points of data collection
of our research.
Families were
recruited for the research in 1988 via three strategies. For the majority, recruitment
was accomplished with the assistance of the state agency on aging and the state
or county agency responsible for providing services to persons with MR. Others
were referred by service providers, and still others were nominated by participating
family members. All families volunteered to participate.
When recruited
for the study in 1988, the mothers ranged in age from 55 to 85 years of age
(mean = 65.52, SD = 6.55). Their sons (54%) and daughters (46%) with MR ranged
in age from 15 to 66 years (mean = 35.55, SD = 7.61). At the present time, these
individuals are 10 years older, so the mothers are in their mid-seventies on
average, and the adults with MR are about 45 years of age. Most of the adults
in this sample have mild (38.26%) or moderate (41.65%) retardation, while 14.53%
had severe and 5.57% had profound retardation. More than one-third (38.7%) have
Down syndrome.
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Data are collected from families every 18 months. The eighth and final wave of data collection has recently begun and will be completed by August 1999. There are multiple respondents in each family. The mother is the primary respondent and participates in an in-home interview and completes a set of self-administered questionnaires at each wave of data collection. Within two weeks of the mother interview, the father is interviewed separately by telephone and also completes the self-administered questionnaires. The sibling who is most involved with the brother or sister with retardation was surveyed by mail as part of the Time 3 and Time 6 points of data collection.
These methods
of data collection are continued even after the adult with retardation has moved
away from the parental home, and in such cases we ask additional questions about
family involvement after placement. In some families in our study, the mother,
father, or both have died during the course of the research. In such instances,
the role of primary respondent shifts to the family member who is most involved
with the individual with retardation, usually a sibling. Thus, there is continuity
of information about family involvement starting from the point at which the
adult lived at home with the parents to the transition to an out-of-home residential
placement, and beyond the point of parental death.
Data Analysis
Our first
research question, which will examine the extent of family involvement in the
placement process, will use primarily descriptive statistics to quantify the
role of aging parents and adult siblings in facilitating the transition from
parental home to placement.
Our second research question will ask how patterns of parental and sibling involvement change during the first three years after placement. A three year period was selected as the time frame for this analysis because it provides a sufficiently "long lens" on the relocation process and subsequent adaptation to give a valid estimate of family involvement after placement. Referring back to Table 1, it can be seen that adults placed at Times 2 through 6 can be studied for this analysis as there is at least a three year period of data collection following the Time 6 point of placement (through Time 8). A three-way repeated measures analysis of variance will be used to address this question for the parents.
There will
be three repeated measures of levels of involvement (at the first, second, and
third points of data collection following placement). A contrast group will
be included, consisting of parents who did not place their son or daughter at
any point in the project period. This contrast is possible because the same
measures of family involvement are available on both families who have placed
their son or daughter and those who still co-reside.
Data about
sibling involvement are available at two points in time C Times 3 and 6. Thus,
adults who lived at home at Time 3 but who were placed at Times 4, 5, or 6 constitute
the sample for the analysis of change in sibling involvement after placement.
Again, a three-way repeated measures ANOVA will be the approach to data analysis,
with two repeated measures (Time 3 and Time 6) and two groups (placed, home)
contrasted with respect to sibling involvement.
Our third
research question will investigate the factors that predict varying levels of
family involvement after placement, and will use multiple regression techniques.
Characteristics of the family, measured prior to placement, will be used to
predict the extent of family involvement after placement. The sample to be used
in this analysis will be restricted to the families who have placed their son
or daughter during the study period.
Our fourth
research question will examine the consequences for the well-being of the individual
with retardation of varying levels of family involvement after placement. Again,
the sample will be restricted to the families of adults who have been placed.
In this case, however, the independent variables will be levels of involvement
after placement and the dependent variables will be indicators of the well-being
of the adult with MR.
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In this study,
we have conducted secondary analyses to examine family involvement with adults
who have MR following a residential transition to a non-parental living situation.
Specifically, we
examined the extent of maternal involvement in the process of relocation, including
selecting the residence and facilitating the transition from the parental home
and patterns of maternal involvement change during the first 3 to 4 years after
the adult son or daughter moved away from home. Lastly, we analyzed patterns
of sibling involvement change after the adult with MR moved away from the parental
home.
Our secondary analyses demonstrated that aging mothers were highly involved in the relocation process and had frequent contact and continued emotional involvement with their adult child. Mothers became increasingly satisfied with their level of contact with their child over time, less worried about the future, and had decreasing levels of direct caregiving and contact with residential staff. Adult siblings reported improved sibling relationships over time. Siblings whose brother or sister moved out of the parental home increased their shared activities and felt less pessimistic about the future. Our findings address a critical gap in knowledge about the life course roles of families of persons with Mental Retardation.
associated with:
Aiding Parents & Other Caregivers (TA2.1)
Aging with Autism and Mental Retardation: Challenges
and Rewards of
Caregiving by Older Parents and Adult Siblings (R2.1)