FAMILY EXPERIENCES WITH COMMUNITY-BASED
RESPII'E CARE

Thesis for the Degree of M. A.
MICHIGAN STATE UNIVERSITY
JUDITH CAROL SIMON
1976

 

 

 

 

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ABSTRACT

FAMILY EXPERIENCES WITH COMMUNITY-BASED RESPITE CARE

By
Judith Carol Simon

This study is an exploration of family experiences with a
Community-Based Respite Care program, in Lansing, Michigan. Respite
care is defined as short-term care, and is provided by this service
to families with retarded children or adults living at home. Respite
care is designed to provide physical and psychological relief to
these families, and can be used for any reason, (including vacation,
emergency, hospitalization, or just rest), for a time period of one
to thirty days. The retarded individuals are cared for by licensed
foster families, in the homes of the foster parents.

The notion of respite care emerged as professionals became
aware that families with retarded children are under a great deal of
stress, and often have difficulty 'finding caregivers for their re-
tarded children. The concept of respite care is fairly new, and pro-
grams have just begun to develop in recent years. At the present
time research that evaluates or investigates the services provided by
existing programs is not available.

This study is an exploration of one particular respite care
serwice. The program was examined through an interview technique,
With emphasis on the concept of psychological relief, or relief from
stress. An attempt was made to define the concept, to determine

Whfiither or not families using the service received psychological

Judith Carol Simon

relief, and also to obtain information about the factors leading to
this relief.

All families who had used the service after their initial train-
ing phase and were willing to participate were interviewed. Thirteen
interviews were completed. In addition, a telephone inquiry was con-
ducted in order to determine the reasons that some families participa-
ted in some or all of the initial training phase and then did not
continue to use the service.

The major findings of the study were: a) the program does pro-
vide a useful and needed service, b) the initial training phase is a
critically important part of the program, c) psychological relief can
be defined and measured, and d) the service did, in fact, provide
psychological relief to nearly all of the families interviewed, in
varying degrees. Implications of the findings were discussed for

this and other respite care programs.

FAMILY EXPERIENCES WITH COMMUNITY-BASED RESPITE CARE

By
Judith Carol Simon

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements

for the degree of

MASTER OF ARTS

Department of Family and Child Sciences

I976

ACKNOWLEDGMENTS

Throughout this endeavor, a number of people have been extremely
helpful to me in various ways. The chariman of my guidance committee,
Dr. Donald Melcer, has given me a great deal of constructive feedback
and support, as have my other committee members, Dr. Robert Boger and
Dr. Margaret Bubolz. I would also like to thank Dr. Mary Andrews, who
was particularly helpful during the planning stage of this project,
perhaps when assistance was most needed.

Special thanks go to Sue Miller, Coordinator of the Community-
Based Respite Care Program; without her enthusiastic approval and
cooperation, this study would not have been possible. In addition, my
appreciation goes to Rita Charron, Director of Programs for the Men-
tally Retarded, as well as a number of staff members of Community
Mental Health/Programs for the Mentally Retarded, including Dr. Gilbert
DeRath, Chris Guldager, Ken Slater, and Shirley Mitchell.

My most personal thanks go to my parents, who have supported me

in all ways throughout my education, and to Jim Abelson, my best friend

and loving companion; in addition to his love and support, he has served

as my primary editor and most tactful critic.

ii

TABLE OF CONTENTS

LIST OF TABLES .

INTRODUCTION

CHAPTER

I

II

III

IV

BACKGROUND TO THIS STUDY

Relevant Literature .

Conclusions
Emergence and Development of the Respite Care Concept
The Lansing Program . . . . .
Purpose of This Study
Definitions of Key concepts

METHODOLOGY

Subjects

Procedure
Rationale . .
Limitations of the Study . . .
Development of Interview Schedule .
Actual Procedure

Inquiry of Non-users

RESULTS .

Results of Interview Study
Characteristics of Families . .
Use of Service, Attitudes and Feelings
Other Care Arrangements
Advantages and Disadvantages .
Thoughts and Feelings About Foster Families and

Training Phase . .

Thoughts and Feelings About Actual Placement
Thoughts and Feelings at the Time of the Interview
Future Use . .
Suggestions and Comments .

Inquiry of Non- Users

DISCUSSION .

Major Findings of Interview Study
Psychological Relief
Inquiry of Non- users .
Implications for This and Other Respite Care. Programs
Implications for Future Research . . . .

iii

Page

Page

CHAPTER

V SUMMARY AND CONCLUSIONS . . . . . . . . . . . . 56
APPENDIX . . . . . . . . . . . . . . . . . . . 58
LIST OF REFERENCES . . . . . . . . . . . . . . . . 66

iv

Table

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LIST OF TABLES

Number of Children Living in Home . . .

Age of Retarded Individual Using Respite Care .

Degree of Impairment of Individual Using Respite Care

Number of Times the Service was Used by the Families
Interviewed .

Sources of Information About the Availability of Respite
Care . . . . . .

Reason Given for Contacting Respite Care Service .

Types of Care Used Other Than Respite Care . .

Available Alternatives to Respite Care at the Time of the
Interview .

Advantages of Respite Care

Disadvantages of Respite Care .

Factor Most Influential on Satisfaction with the First
Placement .

Ways That Things Were Different in the Family During the
Respite Stays . .

Suggestions About the Respite Care Program .

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INTRODUCTION

Professionals in the field of mental retardation are becoming
increasingly interested in the families of retarded individuals. Men-
tal retardation is a disability that almost always has a profound effect
on the family of the affected individual. Research indicates that
families with retarded children experience a great deal of physical,
social, and psychological stress. They are socially limited both with-
in and outside the family, and are faced with specific types of enduring
crises. Viewing the family as a system, the addition of a retarded
child to the family, or the discovery that a child is retarded, is
necessarily disruptive to ongoing family patterns of interaction. The
nature and severity of this impact is dependent on a number of factors
within and outside the family, but in all cases such a situation has
extremely powerful and long—lasting effects.

As professionals have become more aware of these special problems
that face families with retarded children, they have correspondingly
increased their efforts towards the development of services that would
alleviate these problems. One notion that has emerged from these
efforts is the concept of respite care, which is defined as short-term
relief from care. The purpose of respite care is to provide relief
from stress by providing temporary relief from care to these families.

It was believed that since the retarded child was in some ways

responsible for inducing the stress, if the families did not have to

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care for the child for a short time some stress could be relieved.
The need for parents to spend time away from their children for short
periods exists in almost all families, regardless of whether or not
there is a retarded child. For families with retarded children, how-
ever, the need is probably more acute, and the availability of other
caregivers is sharply limited. This is due to the fact that many
people who will care for normal children cannot or will not take care
of retarded individuals.

Some residential care facilities for retardates offer short-
term care, but this is not an ideal situation for two major reasons.
First, many parents are hesitant or unwilling to place their child at
this kind of a facility on a short-term basis, because of the vastly
different environment and type of care at these facilities. The
other major reason that this kind of arrangement is not ideal is that
it is not conducive to the "normalization" of mentally retarded in-
dividuals, which refers to the process of integrating handicapped
individuals into all aspects of community life.

So emerged the concept of community-based respite care, with
the intention of offering short-term relief to any family with a
retarded member living at home. Although the notion of community-
based respite care is not new, actual programs have developed only
in the last few years and are not widespread.

At the present time there is not available research evaluating
the services provided by any of the respite care programs. It is thus
unclear whether respite care acutally supplies the relief that it
was designed to provide. If the concept of respite care is to grow

and the relief assumed to be needed by the families of retarded

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individuals is to be provided, explorations of current programs must
begin.

This study was designed to explore the perceptions and experi-
ences of families using the Lansing, Michigan Community-Based Respite
Care Program. This program has been in operation since July, l974,
and is administered by Programs for the Mentally Retarded. At the
present time it offers family foster care to families with retarded
children and adults living at home within Clinton, Eaton, and Ingham
counties.

One major goal of this study was to begin defining those factors
that may be involved in psychological relief for families using a
service such as respite care. It was hoped that some light could also
be shed on the question of whether or not the service does in fact
provide relief from stress to families using it. Furthermore, a ser-
ious attempt was made to collect data which would be meaningful and
useful to the operation of this particular program, which is fairly
new and still in the process of development.

Because of the nature of the data required, a personal, in-
depth interview approach was clearly the methodology of choice. This
is largely due to the exploratory nature of the study: the important
factors are not known, and the data desired necessitates the elicita—
tion of spontaneous emotional responses. Another relevant factor was
the small sample size, limited by the fact that less than twenty
families had used this service after their initial training phase.

Interviews were conducted by the author with all families who
had used the service after their initial training phase, and who were

willing to be interviewed. Thirteen interviews were completed. The

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interview schedule consisted of questions pertaining to the parents'
perceptions of and experiences with the respite care service.

This methodological approach has some distinct drawbacks, the
najor one being that the data does not lend itself to statistical
analysis, and therefore generalizations must be highly speculative.
Other disadvantages of this technique are the possibility of inter-
viewer bias, the difficulty in collecting comparable data from all
families, and the related difficulty in analyzing the data. Despite
these drawbacks, it was decided that the major purpose of this study,
i.e. to provide an account of the perceptions and experiences of
families who have used the Lansing Community-Based Respite Care Pro-

gram, would best be realized with the use of an interview technique.

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CHAPTER I
BACKGROUND TO THIS STUDY

There has been no prior research that specifically explores
the effects of existing respite care programs. However, there is lit-
erature relevant to this study. It is only with the understanding of
the needs of families with retarded members, and the resultant emer-

gence of the respite care concept, that this study becomes meaningful.

Relevant Literature

 

The basic orientation of this review stems from the perspective
of General Systems Theory, and its application to the family. General
Systems Theory constitutes an attempt to formulate a body of systema-
tic theoretical constructs which address themselves to general rela-
tionships in the empirical world (Boulding, 1968).

In recent years, the family has increasingly been viewed by theo—
rists as a system (Kantor and Lehr, 1975). According to Kantor and
Lehr, a system is a set of different things or parts that meet the
following two requirements: 1) they are directly or indirectly rela-
ted to each other in a network of reciprocal causal effects, and, 2)
each component part is related to one or more of the other parts in
a reasonably stable way during any particular period of time.

Thus the family is organizationally complex, and is governed
by rules at any given time. Each member affects all other members,

whether it be through direct or indirect communication. Any change

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in one member necessarily leads to change in the system. From this
perspective, a retarded child must have an impact on the family. As
Kantor and Lehr (l975) discuss, the birth of any baby induces great
stress within the family. There is a disruption in ongoing patterns,
and new patterns between all family members must be established. The
additional factor of the child's retardation, whether discovered by
the family at birth or later, causes a similar stress and disruption,
and also necessitates the development of new interaction patterns.
The nature and severity of the impact of the retarded child on the
family are dependent on a variety of factors both within the family
system and between the family system and other systems.

Although no authors have yet attempted to directly apply systems
theory to families with retarded individuals, there is considerable
discussion in the literature, from a variety of theoretical perspec-
tives, of the impact of a retarded child on his parents and family.
The impact of a retarded child on the family begins when the family
becomes aware that he is retarded. This may happen immediately after
birth, or up to several months, or even years after the child is born.
A large portion of the literature is concerned primarily with the
initial impact on the family, i.e. when they first realize that their
child is retarded. Our concern here is with the continuing effect of
the child on the family, as an ongoing system. Therefore, the liter-
ature on the initial impact on the family will be discussed only as
It relates to later family functioning.

Before discussing the literature itself, it is important to

“Bke a few key observations. Almost all of the literature deals with
Severely retarded children and their families: the effects of moder-

attaly and mildly retarded children on their families have been studied

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very little. There are a number of reasons for this. The major one
is that in the cases of families with severely retarded individuals,
the results of studies are unambiguous. Since the children are al-
most always born with their disabilities, unusual family patterns
can be attributed to the effects of the child on the family. In con-
trast, the disabilities of mildly and moderatley retarded children
are often not discovered for some time after birth and causation is
often unknown. Therefore, if unusual family patterns were found,
one would not know whether the child was affecting the rest of the
family system, or whether the system was affecting the child, and
inducing symptoms of retardation. Another limitation of the studies
to be discussed is that some methodological flaws exist in most of
them. For example, control groups of "normal" families are used in
very few of the studies. Another methodological problem is that sam-
pling procedures are usually not ideal; for example, parents used as
subjects often are only those belonging to parent groups. With these
considerations in mind, the literature will be traced historically.
Some of the earliest studies on the impact of a mentally retar-
ded child on the family were conducted in Great Britain and Australia.
Schonell and Watts (1956) studied Australian families of school-aged
retardates with 105 below 55, and found that there were severe eco-
nomic, social, and emotional effects on the families. Holt (1958)
IDterviewed families of retardates five years of age or older in
Great Britain. He found that a severely retarded child placed great
Physical demands upon the family, and was generally disruptive of fam-
“y life. Holt's study is one of the few in which careful considera-

titan was given to the social class distribution of the families: the

same class distribution existed in his sample as did in the city where
the study was conducted.

In an extensive study of the effects of a retardate upon the
family, Tizard and Grad (l96l) studied families with low functioning
retarded children in London. Their sample consisted of two groups:
those whose children lived with them, and those whose children were
in an institution. They found that families with their children at
home had more problems than those with their children in institutions.
The problems included physical, psychological, and financial hardships.

In the United States, some of the earliest studies on the fami-
lies of retardates are the result of.a project directed by Bernard
Farber, a sociologist. This project was carried out in l955 and l956,
and occupies an important position in the field. It constitutes what
is probably the earliest attempt to develop sociological theory in
relation to families with retarded children. Because of the impor-
tance of these studies themselves, and also due to their influence
on future studies, they will be discussed in a fairly comprehensive
way.

Farber and his associates (l960a, 1960b) have hypothesized two
types of crisis reactions of families with severely retarded children.
The tragic crisis resembles bereavement in many ways: it is precipi-
tated by the diagnosis of the child, and often continues for a sub-
stantial period of time. The tragic crisis consists of the realization
by the parents that anticipated life careers will be frustrated, and
that future plans for the child, and often for the whole family, will
never materialize. The role organizational crisis is the inability

to cope effectively with the child over a long period of time, and

results when no set of roles can be deveIOped to organize interaction
with the child in an acceptable way. Farber further hypothesizes (l960)
that the tragic crisis is found mostly in families with higher socio-
economic status, and that the role organizational crisis is found in
families with lower socioeconomic status. This situation evolves as

a result of differing perspectives on the socialization of children

by members of different classes. In general, higher status parents
believe that socialization is primarily the task of the child (as op-
posed to the parent), i.e. the child carries the responsibility for

his own socialization. A severely retarded child, however, is incap-
able of complete socialization, and higher class parents therefore

see the child as the source of the resultant problems and frustrations.
This is seen by these parents as an uncontrollable and tragic situa-
tion. Lower class parents, on the other hand, view socialization mostly
as the parents' job. When the mother experiences difficulty in control-
ling her child, and maintaining good relationships with the rest of the

family at the same time, she sees this as her problem. She regards

 

herself as incapable of developing roles which can control interaction
with the family in a way acceptable to her, and therefore experiences
a role organizational crisis. Farber's data supported these hypothe-
ses (Farber, l960). From this viewpoint, each type of family experi-
ences the retardation in a different way, but, in either case, the
situation clearly poses problems for the entire family.

In addition to exploring the crises that families of severely
retarded children experience, Farber has studied various factors and
conditions affecting the impact of the child. As a result of these

studies, an interesting hypothesis has emerged. In his l959 article,

TO

Farber proposes that the presence of a severely retarded child in the
family leads to an arrest in the family life cycle. The contention
is that passage through the stages of the cycle are primarily deter-
mined by mental age, and not by chronological age. The state of a
family is determined by the norms and activities that they are engag-
ing in at that time. In the case of normal children, this is not a
relevant factor, because mental age and chronological age are approx-
imately the same. A severely retarded child becomes the youngest
child socially and does not progress to a maturity level beyond a
normal preadolescent. Therefore the family life cycle is arrested at
that stage, when the youngest child is preadolescent. The severely
retarded child remains at that stage of dependence throughout his or
her life, therefore keeping the parents at that level of responsibil-
ity. This hypothesized arrest in the cycle affects the development
of the parents' domestic and community career, and possibly the value
system of one or both parents. Although this hypothesis has not been
tested, it seems to have far-reaching implications.

In a number of other studies, Farber has looked at a variety of
factors in relation to their effects on the family of a severely re-
tarded child. A large body of data support the conclusion that an
enormous number of factors do in fact affect the impact of retardation
on the family system. These will simply be listed: sex of child, ages
of parents, ages and sex of siblings, social status of family, religion
of family, personality of parents, personality of siblings, parenting
strategy of parents, and parents' perception of the causation of the
retardation. Although this is an extremely superficial listing, it

points out the complexity of the situation. Farber has found, without

TT

any doubt, that severely retarded children do have a negative impact
on their families in many ways.

In a more recent study, Cummings, Bayley, and Rie (1966) explored
the effects of a child's deficiency on the mother. Using a number of
measures, they found that the experience of having a retarded child
is psychologically stressful for the mother. More specifically, they
found that these mothers derive less pleasure in relating to their re-
tarded child than to their other normal children. The mothersin the
study were also found to be bearing a burden of anxiety, depression,
and conflict in modulating hostile feelings towards the retarded child.
They had conflicting tendencies towards both rejecting and overprotect-
ing the affected child. In addition, these mothers experienced a re-
duction in self—esteem with regard to their maternal role.

A number of studies have shown that families with retarded child-
ren have different patterns of social behavior than "normal" families.
Holt (l958) found that forty percent of the parents in his sample
(all parents of severely retarded children) reported being unable to
go out together, due to their child. A smaller percentage reported
not being able to take a vacation. Although a control group was not
used to compare these rates with those of "normal" families, the con-
clusion was that these were unusually low, which intuitively seems
correct. In two related studies, Schonell and Watts (l956) and Schon-
ell and Rorke (l960) found that about half of the families reported I
that their social interactions were affected by the presence of their

severely retarded child. About one half of the parents felt that
Vis“its to the homes of friends and relatives were reduced, and also

that arrangements for shopping were more difficult. Some parents

12

also found it impossible to indulge in daily social activities. Tizard
and Grad (l96l) found that about half of the families reported that
social contacts were limited as a result of their severely retarded
child.

In a study of the actual behavior of families, Meyerowitz and
Farber (l966) found that families with educable mentally retarded child-
ren were less likely than normal families to participate in voluntary
associations and chruches. These families also had less contact with
friends and neighbors, when compared with normal families.

In another recent study, McAllister, Butler, and Lei (197l) com-
pared families with retarded children (both severe and less severe)
to "normal" families, on patterns of social interaction. They found
some major differences between the two groups of families, with respect
to both intrafamily and extrafamily patterns. Within the family, those
with retarded children reported less parent-child interaction than
those with all "normal" children. Outside the family, participation
in formal community organizations was not influenced by the presence
of a retarded child. However, the effect of such a child on informal
aspects of family—community relations was found to be very significant.
The most important finding is that many more parents of retarded child-
ren than those of normal children interact seldom with their neighbors.
These families also visit people outside their immediate family less
frequently than normal families. These results give a picture of the
family of a retarded child being restricted in interaction both within
the family, and between the family and the community. This type of
situation probably has broad implications for the social nature of these

.families, in terms of relationships between and among them.

T3

Conclusions

 

After reviewing the literature, it becomes apparent that families
with retarded children do experience a great deal of physical, social,
and psychological stress. More specifically, they are socially restric—
ted both within and outside of the family, and also may experience an
arrest in the family life cycle. In addition, the parents are faced
with specific types of enduring crises, and the mothers suffer consider-
able psychological stress. Clearly, a retarded child is disruptive to
the family system, and these effects are extremely powerful and long-
lasting.

Others have come to this same conclusion. For example, Ryckman
and Henderson (1965) state that, "There is general agreement in the
literature that the fact of having a retarded child places considerable
strain on the psychological adaptive mechanisms of the parent" (p. 4).
In another example, Wofensberger (1967), after reviewing a great deal
of literature, concludes that a large number of families with retarded
children have problems with individual and marital adjustment, child~
rearing, sibling rivalry, and various other spheres of behavior. In
an article on families of retarded children, Schild (1971) states a
similar viewpoint, and also emphasizes the fact that many of these fam-
ilies are socially isolated from their communities. She attributes
this fact to situational factors, and, most importantly, to negative
and stigmatic societal factors. Many of her ideas seem to stem from
her own personal experience in counseling these families; she provides
a powerful account. In summary of her article, she states,

Viewing the family as a system in which the common needs and

purposes are met through role interactions of its members, the
need for a family approach to mental retardation seems self-evident.

T4

The impact of retardation on the family is generally stressful
and traumatic and adds to the families' vulnerability in coping
with life problems. (p. 441)

Emergence and Development of the Respite Care Concept

 

As professionals have become more cognizant of the special prob-
lems and needs which face families with retarded members, they have
intensified their efforts towards developing programs to meet these
needs. One approach that has emerged from these efforts is the con-
cept of respite care. Respite care is designed to provide relief from
stress to these families by providing temporary relief from care.

It was thought that since the retarded child was in some ways
responsible for inducing the stress, that maybe if the parents did
not have to care for him for a short time, some of the stress could
be relieved. This notion did not arise only in the minds of the pro-
fessionals: Schonell and Watts (1956) found that the most desperate
need voiced by the mothers was for a babysitting or day care service
that would allow them to get away occasionally. Obviously, all parents
use friends, relatives, and caretakers to provide this kind of a ser-
vice, both on a formal and informal basis. Parents of retarded child-
ren also find their own forms of short-term relief: for them, though,
a special problem exists. It is often difficult for these parents to
find caretakers for their retarded child. In other cases, the parents
have friends or relatives who will care for the child. Retarded child-
ren are often difficult or undesirable to care for, and parents there-
fore do not like to ask relatives or friends, because they feel like
they are imposing.

It became apparent that some kind of a service was needed, that

T5

would be available to all families with a retarded child. This type

of a short-term service was available to some parents at residential
care facilities, but, for two major reasons, a residential care facil-
ity is not ideal. The first reason is that many parents are reluctant
or unwilling to place their child at such a facility on a short-term
basis. One of the major reasons for this parental hesitancy is that

a residential care facility is a vastly different environment from a
typical home. The child would be placed in an extremely foreign situa-
tion, and parents fear that their child will be very unhappy, and per-
haps not cared for adequately. Another reason that short-term residen—
tial care is undesirable is that it is not conducive to the "normali-
zation" of the mentally retarded. "Normalization" refers to the
process of allowing and encouraging the integration of handicapped
individuals into the community in all ways. A short-term care service
in a residential care facility does not facilitate normalization in

any way. In fact, it may encourage thinking along the line that
"mentally retarded people should be in institutions."

One solution to the problem is a community-based respite care
program, providing short-term foster care to families with retarded
members. The advantages of this type of a service are many, and apply
to the child, the family, and the community as a whole.

For the child, he is given the opportunity to function in an
environment different enough from his ordinary one to facilitate a
learning experience, but similar enough so that he will remain comfor-
table. The experience of getting along in another home can be of
great value to a retarded individual, especially one who has not been

out of his own home much. It can also serve as a preliminary step

T6

to the achievement of independence from his parents, at whatever level
this might be possible.

For the family, there are also both short and long term advant-
ages. Of course, the short-term advantage allows for relief from care,
so that the family can engage in a wide variety of activities. These
nay include: pure relaxation, vacations, attending to emergencies,
and spending time with the rest of the family. In the long run, re—
spite care can provide a mechanism for the parents to begin to separate
from their retarded child (who may be an adult).

For the community, respite care allows for an increasing number
of individuals to be exposed to mentally retarded persons, and hope-
fully to accept them. This is an example of the process of normaliza-
tion. As the President's Committee on Mental Retardation (1969)
expressed, "We must make as great as possible integration of the re-
tarded into normal community living and working patterns the objective
of planning."

50 emerged the concept of community-based respite care. A num-
ber of programs exist throughout the country. The services provided
are varied, but fall into two general categories: foster care, which
takes place in a home other than that of the natural family, and home-
based care, which occurs in the home of the natural family. Foster
care includes regular foster families, group homes, family group homes,
and halfWay houses. Home-based care includes homemaker services,

qualified babysitting, and nursing.

T7

The Lansing Program

 

In Lansing, Michigan, a community-based respite care program
has been in operation since July, 1974. It is administered by Pro-
grams for the Mentally Retarded and is jointly funded by Community
Mental Health and Developmental Disabilities funds. The operational
cost of the program in l975 was approximately $44,000. Most of this
money is used to pay the salaries of two full-time staff members and
to partially subsidize the cost of hiring foster families. It is
the intention of the program that both foster and home-based care will
eventually be provided. Foster care was first developed, and has been
available on some basis (at first very limited) since early in the
program. Family foster care is now widely available: as of March 1,
1976, thirty-four families had been served. Home based care is pre—
sently in the process of development, and will presumably be avail-
able soon. The service is available to any family having a retarded
child or adult living in their home, within Clinton, Eaton, and Ingham
counties. The natural families pay for the service, and fees are de-
termined on the basis of annual taxable income. Fees range from $1.50
to $8.00 per day (for a copy of the fee schedule, see appendix).

Licensed foster families provide the service, and are trained
cooperatively by the program staff and the natural families. The
first step of these procedures is an initial meeting between the natural
parents (or one of them) and members of the Respite Care staff, possibly
including the coordinator, the administrative assistant, and graduate
students at Michigan State University involved in field placements at
the Respite Care office. The purposes of this initial meeting are:

l) to give the Respite Care staff an opportunity to become familiar

IS

with the needs and desires of the family, and the degree of care nec-
essary for the child, so that an appropriate foster family can be
selected, and 2) to familiarize the natural family with the Respite
Care program. During or after this meeting, the natural family de-
cides if they actually want to use the service, and the staff deter-
mines whether a suitable foster family is available. If both of these
conditions are met, the training phase continues.

The next step is a meeting between the natural parents, a set
of foster parents, and members of the Respite Care staff, at the home
of the foster family. The purposes of this meeting are: l) for the
two sets of parents to become acquainted with each other, 2) for the
natural family to see the home that their child may be staying in,
and 3) for the foster family to find out about the child. The child
is purposefully left out of this meeting for two reasons. The first
is that many of the children need constant supervision or are disrup-
tive, and therefore their presence would not be conducive to a meeting.
The other reason is that the behaviors of the child are discussed in
depth, and in some cases this discussion might encourage the child to
exhibit undesirable behaviors that are discussed.

The next step in these procedures is the beginning of the actual
training of the foster family. First, the foster family, natural
family (including the child), and respite care staff members meet at
the foster home. The actual content of this phase is very much depen-
dent on the degree of special care needed by the child. In cases where
special procedures and methods are necessary for feeding, dressing, or
special treatments, these procedures are demonstrated by the natural

mother, and then practiced by the foster mother (and possibly other

T9

members of the foster family). In cases where the children do not
require specific special treatment, the foster family becomes acquain-
ted with the child. The number of training sessions of this type
needed depends on the child and both families, and can be as little

as one, or as many as four or five.

When both families and the staff feel that the foster family is
prepared to care for the child, a visit is made by the child, alone,
to the foster home, usually for a couple of hours. If this visit
turns out well, a trial overnight placement is conducted, during which
the natural parents are not too far away, and accessible by telephone
if needed. If this visit is successful, the training phase is comple-
ted, and all parties are ready for an actual respite stay, at the re-
quest of the natural family. Sometimes, because of time limitations,
it is not possible to go through this entire procedure as described.
In these cases, procedures are at times combined, or eliminated, if

not seen as crucial.

Purpose of This Study

 

The purpose of this study is to begin to explore the effects of
Community-Based Respite Care on families using these services, by ex-
ploring family experiences with the Community-Based Respite Care pro-
gram in Lansing, Michigan. The specific purposes of this study are:
l) to begin to define the concept of psychological relief, in terms
of the factors that compose it, 2) to determine whether or not the
families interviewed received psychological relief as a result of
their use of the service, 3) to get some idea of the factors that lead

to psychological, and 4) to obtain information on the perceptions and

20

experiences of the families interviewed that will be meaningful and

useful to this program, and also to other similar programs.

Definitions of Key Concepts

 

Respite Care: Short-term relief from care.

 

Respite Care Staff: Individuals either employed or involved in

 

field placements at the Lansing, Michigan Respite Care Program office.

Natural Family; Family with whom the child is living.

 

Foster Family: Licensed foster family that provides respite

 

care, in their home.

Psychological relief, Relief from stress, (used interchangebly):

 

Some form of relaxation, in this case, specifically related to the

absence of the retarded child from the family.

CHAPTER II
METHODOLOGY

The major portion of this study consisted of interviews with
families who had used the Lansing Respite Care Program. In addition,
a brief telephone inquiry was conducted with families who had partici-
pated in some or all of the training steps, and then had not continued
to use the service. Following a full description of the major study,

the telephone inquiry will be described.

Subjects

The subjects were composed of all families who had used the
Respite Care Service after their initial training phase, and who were
willing to be interviewed. The final sample consisted of thirteen

families.

Procedure
The procedure consisted of an interview, which was developed

and conducted by the author.

Rationale

The interview technique was chosen for a number of reasons. The
strengths of this methodological approach correspond with the goals of
this study, and also with existing situational factors. The most impor-
tant situational factor is that previous research has not been done in

the area of respite care. Therefore, the important variables are not

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22

known, and the study needed to be highly exploratory. An interview
technique is most appropriate for an exploratory study, because it
allows both for depth and flexibility. Another relevant element of
the situation is that, at the time that the study began, less than
twenty families had used respite care after the initial training per-
iod. Accounting for the fact that some families would be unable or
unwilling to participate in the study, the expected sample size was
quite small (around fifteen families). This again supports the use
of an interview approach, since the entire sample could easily be
interviewed in a reasonable amount of time, with a broad set of data
collected from each family.

One of the major objectives of the study was to begin to define
those factors that are involved in psychological relief for families
using respite care. In order to meet this goal, it was necessary
to elicit spontaneous emotional responses, and also to have the oppor-
tunity to probe for deeper responses. Of course, an interview is the
only technique in which this was possible. Two other related goals of
the study also require personal, emotional information, and therefore
indicate an interview procedure. These objectives are: to determine
whether this service does, in fact, provide psychological relief to
families using it, and to get some idea of the factors that lead to
psychological relief.

The final major goal of the study was to collect information
that would be useful and meaningful to the Lansing program, and perhaps
to other similar programs. This objective necessitates personal, hon-
est, expression of the feelings and experiences of the families, which

is most thoroughly gained in an interview situation.

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23

There is one additional situational factor which supports the
use of an interview technique. It is essential that the program main-
tain a non-threatening relationship with the families who use respite
care. Since the author was connected with the program to some degree,
it was important that she did not do anything that might jeopardize
this relationship. The program coordinator felt very strongly that
the families would be most receptive to an interview, and that it

would be the least threatening research approach.

Limitations of the Study

 

Admittedly, there are distinct drawbacks to the use of an inter-
view technique. The major disadvantage of this approach is that the
data do not lend themselves to statistical analysis, resulting in the
fact that generalizations made from this study had to be highly specu-
lative. Other drawbacks to this approach were: the possibility of
interviewer bias, and the difficulty in collecting comparable data
from all families. This led to additional difficulties in the analysis
of the data, in that trends were somewhat difficult to see. Even when
these disadvantages were taken into account, it was decided that, in
order to realize the major purpose of the study, i.e., to provide an
account of the perceptions and experiences of families who had used
the Lansing Respite Care Program, the interview technique was still

clearly the most appropriate instrument.

Development of Interview Schedule
The interview schedule was developed in a number of steps. First,
the author delineated the concepts of interest, with input from a num-

ber of sources. Next a rough draft of the interview schedule was

developed, and
ere not part
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24

developed, and piloted with three sets of parents, whose responses
were not part of the final data. These families were selected from

a list of families that the coordinator of Respite Care thought would
be particularly cooperative and helpful. This proved to be true:
these families were very open and cooperative, and contributed a great
deal of helpful feedback about the interview schedule and procedure.
Following this pilot phase, the interview was refined, shortened
(pilot interviews took two to three hours), and made more objective.

(For a c0py of the interview schedule, see appendix.)

Actual Procedure

 

While the interview schedule was being revised, all intact fam-
ilies who had used respite care after their initial training were sent
a letter by the author and Dr. Donald Melcer, the thesis advisor (for
a copy of the letter, see appendix). In this letter, the study was
briefly explained, and cooperation was solicited. Next, the author
telephoned each family that received a letter, asking them to partici-
pate. If they agreed, an appointment was set-up, at their home. In
the cases where only one parent agreed to participate (always the
mother), she was interviewed. Thirteen interviews were completed,
ten in which both parents participated, and three in which the mother
alone participated. The interviews lasted from one-half hour to one

and one-half hours.

Inquiry of Non-users

 

The purpose of this inquiry was to get a general idea of why
some families participated in some or all of the training phase, and

then did not continue to use the service. The subjects consisted of

25

families who had gone through some portion or all of the training
phase, but never actually used the service.

The procedure involved calling each of these families, and
asking one parent to answer a few questions over the telephone. If
the parent agreed, they were asked to confirm that they had partici-
pated on some of the procedures, and then asked to give some idea
about why they did not continue to be involved with the program.
These responses were simply summarized, to provide a catalog of rea-

sons for non-participation.

CHAPTER III
RESULTS

Results of Interview Study
Characteristics of Families
Number of children living in the home (regardless of relation-
ship to the parents): One family had one child living at home. Six
families had two children living at home, and four families had three
children living at home. Two families had four children living at
home. The mean number of children living in the home was 2.54 (see

Table 1).

Table 1. Number of Children Living in Home

 

Number of Children Number of families Percentage of Total
Having That Number
of Children

 

T T 8
2 6 46
3 4 31
4 2 IS

 

The retarded children (11 of them) and adults (two of them)
using respite care ranged in age from 4 to 50, with the mean age being
11.85 (see Table 2). Twelve of the thirteen retardates attended school
(the one who did not is a 50 year-old adult). As classified by the

26

27

Table 2. Age of Retarded Individual Using Respite
Care

 

Age of child Number of Individuals Percentage of

 

That Age Total
4 2 15
6 l 8
7 3 23
8 3 23
ll 1 8
12 l 8
22 l 8
50 l 8

 

respite care staff, 7 of these individuals are severely impared in
their functioning at home, 5 are moderately impared, and one is mildly

impared (see Table 3).

Table 3. Degree of Impairment of Individual Using Respite Care

 

Degree of Impairment Number of Individuals Percentage of Total
With That Degree of

 

Impairment
Mild l 8
Moderate 5 38

Severe 7 54

 

28

Use of the Service, Attitudes and Feelipge

Families interviewed used the service between 1 and 13 times,
with the mean being 2.92. Seven of the 13 families used the service
one time only. The lengths of the stays ranged from one to 10 days,
with a mean of 3.76 days (see Table 4).

Table 4. Number of Times the Service was Used
by the Families Interviewed

 

Times Used Number of Families Percentage of
Using the Service That Total
Number of Times

 

T 7 54
2 2 15
4 2 15
6 T 8
13 T 8

 

In ten of the families, the child had stayed with only one foster
family. In the other three families, the child had stayed with 2 fam-
ilies.

Five families found out that the service was available when they
were approached by the respite care staff, and three families were
informed of the service through a letter from the program. One family
was told of the service by a friend, and one family was introduced to
respite care by a slide presentation about the service. Two families
found out through other agencies, and one family was unsure how they
became aware that respite care was available (see Table 5).

0f the families that were not approached by the respite care staff,

29

Table 5. Sources of Information About the Availability of Respite Care

 

 

How Family Found Out That Number of Families Percentage of
Respite Care was Available Finding Out That Way Total
Approached by respite care staff 5 38
Letter from respite care program 3 23

Other agencies 2 15

Told by friend 1 8

Slide presentation about service 1 8
Unsure 1 8

 

three contacted the staff a week or less after finding out about the
service, and two contacted the service within a week to a month. One
family contacted the staff between a month and three months after find-
ing out that the service was available, and for two families this time
period was more than three months. Of these same eight families, five
reported that they contacted the service because they wanted the secur-
ity of knowing that someone else could and would care for their child:
these families did not have a specific use of the service in mind.
Two families contacted the service because they were planning a vaca-
tion, and wanted someone to care for the child during that time. One
family initiated contact with the service because an emergency trip
was necessary (see Table 6).

In one family, the child first stayed with the foster family by
request a week or less after the initial contact with the service. In
one family, this first stay was a week to two weeks after the first

contact, and in two families, the first respite stay occured between

30

Table 6. Reason Given for Contacting Respite Care
Service (inculdes eight families that were
not approached by Respite Care Staff)

 

 

Number of Families Percentage
Reason Giving That Reason of Total
Security 5 63
Planning vacation 2 25
Emergency trip 1 12

 

two and four weeks after the initial contact. In eight families,

this first stay was more than a month after the initial contact.

Other Care Arrangements

 

Eleven families reported that their retarded child had at some
time been cared for by relatives for at least an entire day. Six
families reported that they had left their child with friends, and
also six families reported leaving their child with babysitters.

Four families said that their child had been cared for at a residen-
tial treatment facility, either on a short or long term basis. Two
families reported that they had never left their child with anyone
besides respite foster families for as long or longer than a day (see
Table 7).

In terms of alternatives to respite care at the time that the
families began contact with the respite care staff, a different pic—
ture emerges. Nine families reported that they did not perceive having
any available people or agencies to care for their child, for at least
an entire day. Three families cited relatives as an alternative, one

family reported that a residential care facility was an alternative,

31

Table 7. Types of Care Used Other Than Respite
Care

 

Number of Families
Type of Care Used That Had Used That
Type of Care

 

Relatives 11
Friends 6
Babysitters 6
Residential care facility 4
None 2

 

and one family reported that they could leave their child with a

babysitter for that length of time (see Table 8).

Table 8. Available Alternatives to Respite Care
at the Time of the Interview

 

Number of Families
.Alternatives Citing "This as an
Alternative

 

None 9
Relatives 3
Residential care facility 1
Babysitter l

 

Advantages and Disadvantages

 

The eleven families that reported having left their child with
someone at some time were asked to compare these types of arrangements

to respite care, in terms of the advantages and disadvantages of each

32

one. A wide variety of responses were offered. The two most fre-
quent advantages of respite care mentioned were competence and
accessibility, each factor being mentioned by five families. In
talking about competence, the parents explained that when they used
respite care they felt more confident that the caretakers were able

to handle the child, as compared with private or institutional care
(many of them expressed that they believed that this was due to the
training procedure). Two of the three families that had left their
child at a residential care facility on a short-term basis reported
very unsatisfactory experiences: they felt that their child had not
been cared for adequately. Both of these families said that they
would not leave their child at this facility again. The other fam-
ily reported satisfactory experiences, and did plan to use that short-
term service again. When accessibility was discussed, the families
said that it was difficult for them to find people other than respite
foster families to care for their child when they wanted the care.
Another related advantage of respite care compared to private arrange-
ments is that when relatives or friends cared for the child the fam—
ily often felt as though they were imposing, and that the people may
not have wanted to care for the child, but did so out of family or
friendship loyalty. This was mentioned by four families. With re-
spite care, they felt that the foster families wanted to care for their
children, and if not, they would say no. Some other advantages of
respite care mentioned were: distance (foster families are closer
than the residential care facility, and therefore more convenient),
the fact that the child went elsewhere, which was sometimes more con-

venient, the cost (cheaper than babysitters), and the freedom of the

33

child to do what he wanted (see Table 9).

Table 9. Advantages of Respite Care

 

Number of Families

 

Advantages Citing This as an
Advantage
Competence of foster families 5
Accessibility of foster families 5
Assurance that they were not imposing 4
Child cared for out of home 2
Distance 1
Cost 1
Freedom of child 1

 

In discussing the disadvantages of respite care, a number of
factors were also mentioned. As compared with private arrangements,
distance was mentioned by two families: the respite foster homes
were farther away than friends and relatives with whom the child
stayed. Another disadvantage was the fact that respite care could
only be used by the retardate, so that the family often had to find
additional care for their other child or children. In addition, two
of the families stated that having the child stay somewhere other than
at home was a disadvantage of respite care in some situations. Cost
was also mentioned as a disadvantage by two families, compared to
residential care, which was less expensive, and private arrangements,
which were often free. One family mentioned competence as a disad-

vantage of respite care. They felt that in their one experience,

34

the foster family was not adequately trained, and therefore could
not care for their child. This experience was very unsatisfactory
for the family--they were telephoned a number of times by the foster
family, and were finally asked to pick up their child several days

early (see Table 10).

Table 10. Disadvantages of Respite Care

 

Number of Families

 

Disadvantages Citing This as a
Disadvantage

Distance 2

Multiple caregivers required 2

Child cared for out of home 2

Cost 2

Competence of foster families 1

 

Thoughts and Feelings About Foster Families and Training Phase

When asked about their thoughts andfeelings when they first
met the foster family, a wide variety of responses was elicited, with
about equal numbers of positive and negative answers. When asked
their first impressions of the foster family (more than one answer
possible), ten families felt that they seemed competent, and three
said that they seemed relaxed. In addition, two families said that
the foster family seemed different from themselves in some way. Four
families used the following descriptors, with one attribute given by
each family: cool, trustworthy, neutral, and incompetent. All fam-

ilies in the sample went through a period of time when they were

35

getting to know the foster family, before they acutally used the ser-
vice, and all families said that this procedure had a positive influ-
ence on their satisfaction with the placements. Most of the families
described this process as increasing their confidence in the foster

family's ability to care for the child.

Thoughts and Feelings About Actual Placement

When asked what factor was most influential on their satisfac-
tion with the first respite care placement, five families reported
this as competence of the foster family. Four of these saw the foster
families as being very competent, while the other family did not (this
experience was described above). Three families reported that the
most important influence was the positive reaction of the child to
the situation. Two families each cited attitudes towards the child
and personality of the foster family or its members as the most impor-
tant factors, and one family said that the involvement of the whole
respite foster family influenced their satisfaction the most (see
Table 11). Other factors cited as influencing satisfaction with
respite placements, but not being of primary importance were: the
availability of the service (whether or not it is available when they
want it), the safety of the child, the cleanliness of the home, and
the fact that the foster family was black (they would have rather
had a white foster family).

When asked how the child responded to the foster family when he
or she first met them, nine families said that the child responded in
a positive way. Two families said that the child seemed neutral,

and two indicated that the child was unable to respond.

36

Table 11. Factor Most Influential on Satisfaction with the
First Placement

 

Number of Families Percentage

 

Factor Most Influential Citing This of Total
Factor
Competence of foster family 5 38
Child's reaction 3 23
Foster family's attitude
toward child 2 l5
Personality of foster family 2 15

Involvement of entire foster
family 1 8

 

For the first respite stay, six mothers reported that they
alone brought the child to the foster home. Four sets of parents
brought the child to the foster home together, and in three cases,
the child was brought to the foster home directly from school,
through special transportation arrangements. Of those families or
individuals who brought the child to the foster home, four reported
that they felt reluctant about the child, and three reported feeling
reluctant about the foster family. Three families said that they
felt comfortable, one family reported not feeling anything in partic-
ular, and one family indicated not remembering their thoughts or
feelings at that time.

All families who brought the child to the foster home for any
of the respite stays were asked to describe what the foster family
did at that time. According to these ten families (one using two

foster families, eight foster families responded in a positive way

37

when the child was delivered; behaviors reported were friendliness,
having made special provisions for the child, and showing the child
around the home. The remaining three foster families were reported
to have made no particular responses at that time.

When asked whether the child was aware that he or she was going
on a respite stay, eight families responded in the affirmative. Four
families indicated that the child was not aware, and one family could
not tell whether the child was aware or not. Of those children who
were aware that they were going on a respite stay, four indicated
positive feelings in anticipation, and two indicated negative reactions.

Twelve of the thirteen families interviewed reported that things
were different in the family while the child was on a respite stay.
These twelve were asked how things were different: they responded in
terms of what they did, who they spent their time with, and the general
tone in the home. The most frequent answer, given by seven families,
was that they went out more while their child was on a respite stay.
Other activities reported were: vacationing (five families), enter-
taining (two families), and hospital stays by a member of two of the
families. Regarding who time was spent with, six sets of parents
reported that they spent more time with each other during the respite
stays, and five families said that they spent more time with their
other children. Two families indicated that more time was spent with
relatives other than the immediate family, and two families spent more
time with friends. Concerning the general tone in the family, six
families reported that their family was more relaxed during the re-
spite stay (see Table 12).

Eleven families reported that they thought about the child a

38

Table 12. Ways That Things were Different in the Family During
the Respite Stays

 

What Families Did Number of Families

 

Reporting
Went out more 7
Vacationed 5
Entertained 2
Hospital stay by one family member 2

 

Who Time Was Spent With Number of Families

 

Reporting
Spouses spent more time together 6
Parents spent more time with other children 5
More time with other relatives 2
More time with friends 2

 

Number of Families

General Tone in Family Reporting

 

More relaxed 6

 

lot during the respite stay, while two families said that they did
not think much about the child. Seven families were curious about how
the child was doing, three were worried about the child, and two fam-
ilies felt relieved that the child was not there. One family said
that they missed the child, and one family said that they felt strange
without the child there.

Six families said that their other children did not say anything

about the respite stays, and in five families the other children did

39

comment on the respite stays. These comments were varied, ranging

from missing the child to enjoying not having the child at home.

Thoughts and Feelings at the Time of the Interview

 

When asked if their present feelings or attitudes about the re-
spite care service or staff were different than they had been at the
beginning of their contacts, nine families responded in the affirma-
tive, and four in the negative. Of the nine families whose viewpoints
had changed, six had become more Positive, and three had become more
negative. The positive changes consisted of becoming more confident,
comfortable, and appreciative of the service. The three negative
changes in attitudes were each different. One family had a bad ex-
perience with a babysitter that she said was recommended by the re-
spite care staff, and therefore lost confidence in the service.
Another family felt that the staff was not doing enough to get more
foster homes, but was satisfied with their experiences with respite
care. The third family had a bad experience when using respite care,
as described above, but did say that they might use the service
again.

Six families felt that their use of respite care had helped
their child in some way, while seven did not. Four of the families
felt that the benefit to the child was in allowing him or her to
adapt to new people and situations. One of the other families said
that his stay "gave him a lift," because during the stay he (a 50
year-old adult) taught another retarded adult how to make terrycloth
pillow covers. The remaining family just said that their adult re-

tardate came back from the stay happier. Only one family reported

40

that they had actually noticed changes in their child after using
respite care; this was the family with the adult retardate who taught
pillow-making. Only one family reported that their feelings about
the child had changed since using respite care; after using it, they

reported, they are usually more patient with their retarded child.

Future Use

 

Eleven families said that they planned to use respite care again.
One family said they did not plan to use it again, and the other was
unsure. Of the families that said they would use respite care again,
eight did not know when (three of these said possibly during the summer).
One of the other four families said that they planned to use the service .
within a month, and the other three said not for several months. The
families were also asked the conditions under which they might use the
service again; eight said that it would be for a vacation or weekend
trip. Three families named the following conditions under which they
would use respite care, with one family naming each: emergency, enter-
taining friends, and relaxation at home. Two families did not say why
they might use respite care again.

When asked if they had recommended respite care to other families,
eight respondents said yes, and five said no. Three of these five said
that they would recommend the service if given the opportunity. Three
families said that their use of respite care had prevented short-term

residential placement of their child.

Suggestions and Comments

 

When asked for suggestions about the respite care service, some

common responses were: that a home-based respite care program be

41

developed (four families), that foster families be recruited who
lived closer to the homes of the natural families, especially in out-
lying areas (five families), and that more foster families be recruited.
A number of the other suggestions had to do with characteristics of the
foster families or their homes: that the foster families should not
have pets, that the foster homes should all be clean, that the foster
families should be trained and able to handle particularly difficult
children, and that there be foster homes in quieter neighborhoods.
Other suggestions were: that the families be given the opportunity to
get to know the foster families better, that the foster families be
better acquainted with the child, that the respite care service arrange
for the child to be transported for the respite stay (and charge a fee
for this), and that the foster family provide things such as diapers

and food, and that a fee be charged for these supplies (see Table 13).

Table 13. Suggestions About the Respite Care Program

 

Number of Families

5U9985t10" Making This Suggestion

 

Foster families be recruited who lived
closer to the natural families 5

Home-based respite care be made available 4

Suggestions dealing with characteristics of
foster families and their homes 4

Suggestions dealing with procedures
conducted 4

 

Additional comments about respite care were asked for: one

mother said that she had wanted a rest and didn't get one (discussed

42

above), and another mother said that she still felt hesitant and un-

sure about using the service (not for any specific reason). Five fam-
ilies had very positive comments, including: the training and payment
system were very good, the service was very good and the staff sincere,

and the service as a whole was fantastic.

Inquiry of Non-users

 

Six families that had participated in some or all of the train-
ing phase but did not actually use the service were contacted by tel-
ephone by the researcher. Two families reported that they had placed
their child either in a residential care facility or a permanent foster
home shortly after their contacts with respite care, and since the child
no longer lived in the home, they did not have a need for respite
care any longer. One family reported that they had called the ser-
vice a number of times, but a foster family could not be found that
would care for the child. One family said that they had planned to
use the service once, but one of the children in the foster family
became ill, and the arrangements had to be cancelled. Since then, they
have not needed the service. Lack of need was reported as the reason
that another family had not used respite care. The remaining family
said that other families needed the service more than they did because
they had other available sources to care for their child. This family
expressed the feeling that respite care was a fantastic service, and

if it were more available, they would use it.

CHAPTER IV
DISCUSSION

In this chapter the major findings of the interview study and
of the telephone inquiry will be discussed, followed by a discussion

of the implications of this study.

Major Findings of Interview Study

 

Most families who were interviewed had retarded children (as
opposed to adults), and all but one were either severly or moderately
retarded. Families used the service an average of 2.92 times, with
the average stay lasting 3.76 days. Most children stayed with only
one foster family. The families found out about the service in a
variety of ways, with no single response in the majority. Of the fam-
ilies that were not approached by the respite care staff, most of
them initiated their use of the service because they wanted the secur-
ity of knowing that someone else could and would care for their
child. This is a significant point because it seems, that for these
families, this security is of some psychological relief in itself.
This finding is presumably related to the fact that at the time that
they began contact with respite care, most of the families (69%),

did not feel that there were any other people or agencies that could
and would care for their child for at least an entire day. This pro-
duces a rather dim picture, and seemingly very different from a fam-

ily with only "normal" children. It seems that the notion that

43

44

families with retarded children have trouble finding care for their
children, discussed in the first chapter, is borne out in this sample.
If the general assumption is accepted that all parents need to spend
some leisure time away from their children, regardless of whether
they have a retarded child, then these results demonstrate the need
for a respite care program.

Most of these families had at some time left their children with
other people or agencies, but for some reason did not feel that these
were viable alternatives any longer. Some of these reasons were in-
dicated when the families were asked to compare respite care to other
care arrangements. Some families said that they felt that the respite
foster families were more competent to care for their children than
were other individuals or agencies, and therefore they felt more con-
fident leaving the child at a respite foster home than somewhere else.
A number of families said that sources other than respite care were
quite inaccessible (some mentioned that as the child got older, it
became increasingly difficult to find able and willing caregivers).
Another factor is that some families did not like to ask relatives
or friends to care for their child, because they felt that it was
an imposition. These comments give some insight into the reasons
why families with retarded children often feel that no one else is
available to care for their child.

Some of the disadvantages of respite care shed light on the
reasons that some families do not use it more often. All except one
disadvantage mentioned were practical things, as opposed to attitud-
inal variables. These included: distance of the foster homes, the

fact that respite foster parents could not care for the other children

45

in the family, the fact that the child had to go to another home, and
the cost. One family cited competence as a disadvantage of respite
care; they were the family who had a very unsatisfactory experience
the time that they used the service, but did say that they might use
the service again.

One important result of the interviews has to do with the ini-
tial training phase; all families reported that there was a period of
time when they were becoming acquainted with the foster family before
they actually used the service, and all families felt that this pro-
cess had a positive influence on their satisfaction with the place-
ments. This is an especially important finding, because the purpose
of the training phase is to make the families more comfortable with
using the service, and, for this sample, that seems to be just what
this process did.

Competence of the foster family was the single most frequent
factor cited as most important in influencing satisfaction with the
first placement. This implies that the training phase does play an
important role, in that the training phase increases confidence in
this competence. Another factor mentioned by a number of families
was the positive reaction of the child to the situation.

Most of the families (69%) reported that the child responded in
a positive way when he or she first met the foster family, and in no
families was the response of the child reported as negative. Since
the response of the child was cited as important to some families in
influencing their satisfaction with the placements, this is an impor-
tant factor to attend to.

Perhaps more important are the parents' and children's feelings

46

and reactions at the time of the actual respite stays. Some children
were not brought to the foster homes by their parents (they were
brought by special transportation), and therefore the parents were not
able to report what happened when the respite stay began. Of those
families and individuals that did bring the child to the foster home
(for the first stay), most of them felt some reluctance about either
the foster family or the child. Of the children who were aware that
they were going on a respite stay, as reported by their parents, half
of them responded positively. Of the others, half responded negatively
and half responded in a neutral way or not at all. These reactions,
like the initial responses of the child, are probably quite important
influences on satisfaction.

All but one of the families said that things were different in
the family while the child was away. The families did leisurely things
that they did not normally do with the child there, such as going out
more, vacationing, and entertaining. In a few families, one member
went to the hospital during the respite stays. Most families spent
more time than usual with the family members other than their retarded
child, and/or with other relatives and friends. Nearly half of the
families indicated that the general tone in the family was more relaxed
during the respite stays. These findings seem to imply that at least
physical relief was received by most of the families; the statements
that the tone in the family was more relaxed seems to indicate psycho-
logical relief.

Most of the families reported that they thought about the child
during the respite stay. While a small number of families said that

they were worried about the child, the others were either curious about

47

how the child was getting along, glad that the child was not there,
lonesome for the child, or felt strange that the child was not there.

Most of the families interviewed indicated that their feelings
or attitudes about the respite care service had changed since the be-
ginning of their contacts with the service, and the changes were mostly
in a positive direction. This is an encouraging finding; however, the
negative changes in feelings and attitudes are also important to con-
sider.

About half of the families reported that their use of respite
care benefited their child in some way. This is important because it
seems that if parents feel that their child is gaining something from
the use of respite care, perhaps they will be more eager to use the
service, and also may get more psychological relief from this use.

The fact that most families said that they planned to use the
service again is an indication that they are gaining enough from their
use of the service to warrant using it again (or at least reporting
these plans). Eight families reported that they had recommended the
service to other families, and three others said that they would, if
given the opportunity. This results in eleven families saying that
they think highly enough of the service to recommend it.

Another significant finding is that, for three families, the use
of respite care prevented short-term residential placement. Although
this is a small percentage (23%), it does show that institutionaliza-
tion is being prevented, which, as discussed in the first chapter,

facilitates normalization of retarded individuals into the community.

48

Psychological Relief

 

One of the major goals of the study was to begin defining those
factors that may be involved in psychological relief for families using
respite care. A number of specific questions included in the interview
schedule seem especially important to the author as indicators of psycho-
logical relief. These are: whether things were different in the fam-
ily during the respite stay; if they were, in what ways (especially
were things more relaxed) 'did the family worry about the child' and do
the parents feel that their use of the service helped the child in any
way.

With these particular areas in mind, each interview was studied
as a whole and rated on the degree of psychological relief received:
very low, moderate, high, or very high. The interviews were each
looked at as a whole because in some cases families expressed feelings
and experiences spontaneously which indicated the degree of relief, in-
stead of in response to the specific questions mentioned above. The
results indicated that three families received a very high degree of
psychological relief, four families were rated high on this relief,
five families received almoderate amount of psychological relief, and
one family's relief was judged as very low.

In order to get some ideas about the factors that might lead to
psychological relief, characteristics of the families that were rated
as receiving a high degree of psychological relief were compared with
characteristics of the other families. It should again be pointed out
that these judgments are subjective, and highly speculative. The fam-
ilies were looked at on the following dimensions: acceptance of the

handicap of the child (which was rated by the interviewer after each

49

interview, as a general judgment), severity of the child's retarda-
tion, reasons for use, number of times used, child's reaction to the
respite stays, and feelings when the natural families met the foster
families for the first time.

The results of these comparisons showed that the two groups of
families differ on three of these characteristics: acceptance of the
handicap, the reaction ofthe child to the respite stays, and the
feelings of the parents when they first met the foster family. In
general, families who received a high degree of psychological relief
had accepted the handicap of their child to a greater extent than the
other families. In addition, these families reported that their re-
tarded children responded better to the foster families and the re-
spite stays than did the families receiving moderate or very low
relief. The other difference between these two groups was that all
but one of the families receiving moderate or very low relief repor-
ted feeling apprehensive when they first met the foster family. Thus,
it seems that psychological relief may, in part, be a function of
characteristics of the families themselves, and their feelings both
about their children, and about using a service such as respite care.
Also, psychological relief may be highly influenced by the child's
reaction; if the child seems to enjoy it, the families may also feel
the freedom to enjoy. This may be related to guilt feelings, which
many parents of retarded children are presumed to have, and which was
also mentioned by some of the families as a reason why other families

don't use the service.

50

Inquiry of Non-users

 

The results of the telephone inquiry do not lead to any clear
conclusions. Four of the six families reported that they did not
need the service, and one of the other families said that they did
not need the service as much as other families, so did not use it.
The author feels that some of the families perhaps were not totally
honest about or aware of the reasons that they had not continued with
the program. In order to obtain a clearer picture of the factors in-
volved in initiating contact with the service but never using it, a

more extensive study is needed.

Implications for This and Other Respite Care Programs

 

Clearly, the extent to which generalizations can be drawn from
this study is limited by the small sample size and the subjective na-
ture of much of the data. As a result, conclusions drawn in this sec-
tion must be considered speculative. However, these limitations must
not be allowed to obscure a number of important implications derived
from the study.

The results of this study indicate a number of characteristics
about this program. First, it seems that this program provides a
needed service, as indicated by the fact that most of the families
reported that they did not have any other available sources to care
for their child. The results also demonstrate that most families do,
in fact, receive psychological relief from their use of the service,
and that the following factors seem to be related to this relief:
acceptance of the handicap of the child by the parents, the child's

reactions to the situation, and the feelings of the parents when they

51

first met the foster family. The researcher hypothesizes that accep-
tance of the handicap and feelings when meeting the foster family

are related variables, in the following way: the less the parents
accept their child's handicap, the more reluctant they are to use a
service such as respite care, and this reluctance is manifested in
their first meeting with the foster family. This is presumably re-
lated to the notion that less acceptant parents have more guilt
feelings about their child being retarded, and therefore also feel
guilty about having others care for their child.

If these assumptions and hypotheses are accepted, then certain
courses of action are implied for the staff of the program, if a
greater degree of psychological relief is desired. These implications
are also applicable to encouraging families who would like to use
the service, but because of their own feelings (i.e. guilt), do not.
Probably the most important thing that the staff can do is to be
aware of these hesitancies, and to express this awareness to the fam-
ilies. Perhaps these families can discuss these apprehensions, if
they want to, either with a staff member, or with another family who
has used respite care. This requires a great deal of flexibility,
and a highly individualistic approach. For example, one mother who
was particularly hesitant said that she would feel more comfortable
if she was better acquainted with the foster family. This information
is important, but will probably not be volunteered by the mother, but
instead would only be revealed if asked for.

The third factor found to be related to psychological relief
was the child's reactions to the foster family and to the respite

stay. The implication, of course, is that the staff pay particular

52

attention to the reactions of the child because these reactions are
important to the family. Especially in the cases of particularly
hesitant families, the staff should do everything possible to insure
that the child has a positive experience. Related to this is the
issue of benefits to the child. Again, hesitant parents may be en-
couraged to use the service if they feel that it will benefit their
child. With all families, it would probably be advantageous for the
staff to point out that, by using the service, the child will benefit
in the following ways: having the opportunity to adapt to new
people, places, and situations, and eventually, becoming less depen-
dent on their family.

Both the positive and the negative aspects of this program have
implications for the development and formation of this and other
respite care programs. One outstanding feature of the Lansing Respite
Care program seems to be the training phase: all families felt that
this process had a positive influence on their satisfaction with the
service. In fact, some families said that they would not have used
a service that did not have some type of training phase. None of
the families indicated that the training phase was too lOng and in-
volved, but a few expressed that they would like to become better
acquainted with the foster family, and would also like their child
to get to know the foster family better. For this program and others
these findings imply that a training phase should be an integral part
of a respite care program, for two reasons: to train the foster fam-
ilies, and to allow both families to become more comfortable with using
and providing the service. These findings further imply that the

natural families should be directly involved in the training phase,

53

and that the length and intensity of the training period should be
determined by the needs and wishes of both families.

Other positive aspects of the program mentioned by the families
interviewed can give ideas about continuing and developing programs.
Accessibility was mentioned by a number of families--the fact that the
care was available when they wanted it. This should, of course, be
a goal of any service.

Some factors were indicated as disadvantages in some situations
or by some families, and as advantages in others. One example is dis-
tance; for some families, the respite foster homes were farther away
than other care arrangements, and for others, they were closer. In
any case, the closer the foster families were, the better this was
for the natural families.

Another factor that was seen as both an advantage and a disad-
vantage was the cost; respite care is cheaper than some other arrange-
ments and more expensive than others. This has no implications other
than the obvious: the cheaper a service, the happier consumers will
be.

One factor that does have implications for the delivery of ser-
vices is where the care will be given. Some families cited the fact
that the child was cared for in a home other than his own as a disad-
vantage, while others cited this as an advantage. The implication of
this, of course, is that flexibility should be one goal of the service.
Clearly, many families do want "home-based“ care, but others prefer
to have the child taken out of the home, and for others, their pref-
erence depends on the situation (i.e. their plans during that time).

This issue is related to one of the main disadvantages mentioned of

54

respite care; the fact that only the retardate could go on a respite
stay, and it was often necessary to find additional care for other
children in the family.

There is one other negative aspect of the program that seems
to have implications for the future of this and other programs.
Through the course of a number of interviews, the interviewer became
aware that some of the families would have liked to meet other foster
families, but did not perceive that this option was available to them
unless they expressed dissatisfaction with the foster family that they
had used. They were not dissatisfied with the foster family they had
used, but seemed to think that they might be more satisfied with an-
other family. For some reason they did not express this to the staff;
perhaps they felt that it would be asking too much. If the families
expressed this, and it were possible for them to meet other foster

families, satisfaction might increase.

Implications for Future Research

 

This study brings up a number of directions for needed research.
As discussed in the first chapter, the research on the impact of a re-
tarded child on the family system in many cases consists of studies
with poor sampling procedures and a lack of control groups of normal
families. Comprehensive basic research is needed, so that an accurate
assessment can be made of the family systems of retarded children, and
their needs.

In the area of respite care there has been no previous research,
so the research needs are inexhaustible. Studies with larger samples

in the following areas are specifically indicated by this study:

55

studies indicating the needs and desires of families using respite
care; studies measuring family stress before, during, and after using
respite care; studies further defining and measuring the concept of
psychological relief; comparative studies of families with retarded
children who use and don't use respite care; and comparative studies
of respite care programs following different procedures, especially

regarding the initial training phase.

CHAPTER V
SUMMARY AND CONCLUSIONS

This study was an exploration of the Lansing, Michigan Community-
Based Respite Care Program. Respite care is defined as short-term re-
lief from care, and is provided to families with retarded children or
adults living at home. In this program, care is provided to the
retarded individuals by licensed foster families.

The purpose of respite care is to provide relief from stress, or
psychological relief, to these families by providing temporary relief
from care. The fact that these families are experiencing a: great
deal of stress, and therefore are in need of this relief, is indicated
by research findings, and is also generally agreed upon by profession-
als in the field of mental retardation.

Although the concept of community-based respite care is not new,
actual programs have developed only in the past few years and are not
widespread. At the time of this study, there was no available re-
search evaluating the services provided by these respite care programs.

The purpose of this study was to begin to explore the effects
of respite care on families using these services. This was done by
studying the Lansing Respite Care program in particular, with the use
of an interview technique. Interviews were conducted with all families
who had used this service after their initial training phase and who

were willing to be interviewed. Thirteen interviews were completed.

56

57

The specific goals of this study were: 1) to begin to define
the concept of psychological relief for these families, in terms of
the factors that compose it, 2) to determine whether or not the fam—
ilies interviewed received psychological relief as a result of using
the service, 3) to get some idea of the factors that lead to psycho-
logical relief, and 4) to obtain information on the perceptions and
experiences of these families that would be helpful to this and
other similar programs.

The objectives of this study were met. It should be pointed
out that, because of the small sample and subjective nature of the
data, conclusions drawn from this study must be considered specula-
tive. The author was able to define psychological relief as the comb-
ination of a number of responses to questions included in the
interview schedule, concerning perceptions and feelings during and
after the respite stays. It was found that almost all families in—
terviewed received psychological relief as a result of using the
service. In addition, factors leading to psychological relief were
delineated.

A great deal of information was gained that hopefully will be
meaningful and useful to this respite care program, and also to other
similar programs. Two important findings of this kind were: 1) re-
spite care provides a badly needed service, which is demonstrated
by the fact that nine of the thirteen families interviewed (69%)
reported that, other than the respite foster families, they did not
have any available sources to care for their child; and 2) the ini-
tial training phase is a critically important part of the program.
Implications for the Lansing Respite Care program, for other similar

programs, and also for future research were discussed.

APPENDIX

PROGRAMS FOR THE MENTALLY RETARDED
RESPITE CARE
FEE SCHEDULE

 

The schedule of fees to natural families for the use of respite
care will be based on their taxable income and applied against a slid-

ing scale. Respite stays of 4 days or more can be planned with a re-

 

 

 

duced fee.
Daily Charge For Daily Charge For
Planned Respite Care Planned Respite Care

Taxable Income Less Than 4 Ddys 4 Days Or MOre

$0 - $2,500 $2.00 $1.50

$2,500 - $5,000 $4.00 $3.50

$5,000 - $10,000 $6.00 $5.50

$10,000 & above $8.00 $7.50

Fees can be paid on an installment basis with payments distri-
buted over as long as one year.

The fee schedule is based on all available information including
comparable fee schedules, respite care budget limitations and consider-

ation of financial concerns of the families using the service.

58

INTERVIEW SCHEDULE

Before we get started with the interview, I'd like to explain a few
things. I'm a graduate student at Michigan State, studying family
experiences with respite care as research for my masters degree. I
have done field work, as a part of my coursework, with the respite
care program, but I'd like to emphasize that what I am doing now is
research, under the direction of Michigan State, and not respite care.
All of the information that I collect from you and the other families
will remain strictly confidential, and anonymous. The information
that I colleCt will hopefully contribute to the development of the
respite care program, but will only be revealed to the respite care
staff in terms of general trends. I would like to tape record this
interview, so that I can play it back for myself, and so that I do
not have to take a lot of notes. No one besides myself will have
access to the tape. If you have any objections to the taping, I
won't tape the interview.

00 you mind if I tape? M F
____Yes ____
____No

To begin, I'd like some background information about your family,
and your use of respite care:

How many children do you have?

 

What are their names and ages?

 

 

 

Which child has been in respite care?

 

Will you describe child briefly, in terms of what he/she can do?

 

 

Does he/she go to school? ____Yes No

If yes where?

 

If yes, in what program?

 

 

59

6O

 

For how long have most of those stays been?

How many foster families has child stayed with?

 

Thinking back to your original information about respite care, how
did you first find out that the service was available?

M F M F M

___was approached_______told by PMR staff_______told by PMR letter

F M F M F M

_______told by school personnel________told by GLARCA_______told by
F M F M

friend;______slide presentation________

OTHER

 

How much later did you first contact the respite care staff?
___ week or less ____week to month ___ month to three months

____more than three months ____was approached OTHER

 

 

What specifically led you to contact the respite care staff?

____emergency-physical ____emergency-psychological ___ wanted rest
____vacation ___ illness-hospitalization ____illness-nonhosp.

____ security-insurance .___ did not contact—-was approached

OTHER

 

About how long after your first contact with the respite care staff
did you actually use the service? By this I mean the first time that
child stayed with the foster family at your request?

____week or less ____week to two weeks ___ 2-4 weeks ___more than

month OTHER

 

What alternatives did you have, at that time, in terms of other
agencies or people to care for child?

____Hillcrest ___ Other residential facilities ____friends
____ relatives ___babysitters ____None

Have you ever left child with friends, relatives, babysitters, or
other agencies for as long or longer than an entire day?

no ____ friends ____relatives ___babysitters ____agencies

61

OTHER

 

If yes, can you compare private arrangements to respite care, by talk-
ing about the advantages and disadvantages of each?

 

 

 

I'd like you to remember back to the first (few) contact(s) you had
with the foster family(s) that has (have) cared for your child. Many
people have a lot of considerations when going into a new situation
like this one. Can you tell me something about your thoughts and
feelings at this (these) time(s)?

 

 

 

What was your first impression of the foster family(s)?
#1 __warm __cool __trustworthy __different __similar __competent

__incompetent OTHER

 

Was there a period of time when you were getting to know the foster
family(s) before you actually used the service? yes .___no

If yes, do you think that this process of getting acquainted influ-
enced your satisfaction with the placement? yes ___ho

If yes, in what ways?

 

 

If no, do you think that a process of getting acquainted would have
influenced your satisfaction with the placement? yes ___no

If yes, in what ways?

 

 

What was the most important thing that influenced your satisfaction
with the first placement?

M F M F M F M F M
__staff;____personality_____family involvement_____knowledge_____

F M F M
accomodations_____competence-availability of care_____ettitudes towards

F M F M F M
child__.__reactions of child_____freedom of child_____similiarity of

F
families__

OTHER

 

62

What are the most important things about the foster family(s) that
influence your satisfaction with the placement(s)?

M F M F M F M F
__personality_____family involvement______knowledge_____eccomodations__
M F M F M F
__eompetence-av. of care_____ett. tow. chld_____freedom of child__

M F

__similarity of families___

OTHER

 

 

Are there other things that are also important influences on your sat-
isfaction with the placements? __yes __no

If yes, what are they?

 

How did the child respond to the foster family(s) when he/she first
met them?

positive ___negative ___unable to respond

Now I would like you to remember the first time you actually used the
respite care service. How did child get to the home of the foster
family? ___parents brought ___father broutht ___mother brought
___special transportation OTHER

 

If one or both parents brought the child there: When you brought child
to the foster family's home for the first time to stay, what kinds of
thoughts ran through your mind?

M FM FM F
__don't remember_____nothing in particular_____reluctance about FF___

M F M F M F
__reluctance about child_____guilt_____comfort__ OTHER

 

 

Does child know when he goes on a respite stay? __yes __no

If yes, do you usually notice anything different or unusual that child
does when he/she goes on a respite stay? __yes no__

If yes, what kind? __positive __negative __neutral

If someone brings child there, describe as best you can what the foster
family(s) does (do) when you bring child there.

1_

_A_

 

63

In general, are things different in the family while child is on a

 

respite stay? F M F M
___yes____ ___no____

If yes, in what ways?
M F M F M F M F M
__more relaxed_____more tense_____yacation_____hospital_____entertain-

F M F M F M F
ing_____more time alone_____more time friends_____more time spouse___
M F M F M F
__more time children_____more time other relatives_____go out more___
OTHER
Do you usually think a lot about child during the respite stay?
M F M F
__yes___ __ho___
If yes what kinds of thoughts do you have?
M F M F M F M F
__worry_____eurious_____guilty_____glad not there___

Do your other children usually say anything about the respite stays?
__yes ;_ho
If yes, what kinds of things do they say?

 

 

Now I'd like to talk about your present ideas about respite care. Are
your feelings or attitudes about the service or staff different now
than they were at the beginning of your contacts? M F M F

_yes__ __no_

If yes, in what ways?

 

 

If yes was there a specific time when these changes took place?
__yes __no If yes, when?

 

Do you think that your use of the service has helped child in any ways?

M F M F
__yes___ __no___

If yes, in what specific ways?

 

 

64

Have you noticed any changes in child since you've used respite care?

M F M F
__yes___ __po___

If yes, what kinds?

 

Do you think that your feelings or attitudes about child have changed
since your involvement with respite care?

M F M F

__yes_____no___

If yes, in what ways? positive ___negative __neutral
Do you plan to use respite care again? yes ___no

If yes, do you know when

 

If not know when, about how soon

 

For any special reason?

 

Have you recommended the service to any other families? __yes __no
If no, would you, if you had the opportunity? __yes __no

Has your use of respite care prevented either short term or long term
residential care? __yes __no

If yes, in what ways?

 

Do you have any suggestions about the respite care service that would
make it more desirable, or a better experience for you?

 

 

 

MICHIGAN STATE UNIVER SITY

 

(ULLI'LI‘L OF HUMAN ECOLOGY EAST LANSING ' MICHIGAN ' 18824
Ill-PAR I'MENT OF FAMILY AND CHILD SCIENCES

April 19, 1976

I am a graduate student in the Department of Family and Child
Sciences at Michigan State University. I am studying family ex-
periences with the Lansing Respite Care Program, and would greatly
appreciate your cooperation. I am conducting interviews with

. families who have used the Respite Care service, to discover their
impressions and viewpoints of the service, and would like your fam-
ily to participate. This would involve an interview with both of
you, at your home, lasting approximately one and one-half hours.

I would like to emphasize that all information will remain strictly
confidential and anonymous. The Respite Care staff is aware and
has approved of the study. They will receive a report of the re-
sults, but no names will be identified. If you choose to partici-
pate, I will send you a sumary of my findings. We believe that
the results of the study will be useful in future development of the
Respite Care Program. Your participation in the study will be im-
portant.

I will be in touch with you by telephone in the near future. Of
course, you are in no way obliged to participate, and the Respite
Care staff will not be informed as to who participates in the study.
I am looking forward to talking with you.
Sincerely,
@AOI‘v-UL (£111va

Judith Simon

)01204/ “/4001

Donald Melcer, Ph.D.
Faculty Supervisor

65

LIST OF REFERENCES

Boulding, K.E. General systems theory - the skeleton of a science
pp. 3-l0 in Buckley, W. (ed.) Modern systems research for the
behavioral scientist, Chicago: Aldine Publishing Cb.,"l9682

 

 

Cummings, S.T., Bayley, H.C., and Rie, H.E. Effects of the child's
deficiency on the mother: a study of mothers of mentally re-
tarded,chronically ill, and neurotic children. American Journal
of Orthopsychiatry, l966, 36, (4), 595-608.

 

 

Farber, B. Effects of a severely mentally retarded child on family
integration. Monographs of the Society for Research in Child
Develgpment, l959, 24 (2).

 

 

Farber, 8., Jeanne, W.C., and Toigo, R. Family crisis and the decision
to institutionalize the retarded child. Council for Exceptional
Children Monographs, l960, series A, no. l, Washington, D.C.

 

 

Farber, B. Perceptions of crisis and related variables in the impact
of a retarded child on the mother. Journal of Health and Human
Behavior, l960(a), l, (2), 108-118.

 

Holt. K.S. Home care of severely retarded children. Pediatrics, 1958,
22, 744-755.

 

Kantor, D. and Lehr, W. Inside the family, San Francisco: Jossey-Bass
Inc, Publishers, 1975.

 

McAllister, R.J., Butler, E.W., and Lei, T.J. Patterns of social inter-
action among families of behaviorally retarded children. Journal
of Marriage and the Family, l973, 35, (l), 93-100.

 

Meyerowitz, J.H. and Farber, B. Family background of educable mentally
retarded children. pp. 388-398 in Farber, B. (Ed.) Kinshi and
family organization, New York: John Wiley and Sons, I966.

 

President's Committee on Mental Retardation. MR 69: Towards Progress:
The Story of a Decade. Washington, D.C., 1969.

 

 

Ryckman, 0.3. and Henderson, R.A. The meaning of a retarded child for
his(p;rents: a focus for counselors. Mental Retardation, l965,
3, 4 , 4—7.

 

66

67

Schild, S. The family of the retarded child. pp. 43l-442 in Koch, R.
and Dobson, J. (Eds.) The mentally retarded child in his family:
A multidisciplinary handbook. New York: Brunner/Mazel Publishers,
1971.

 

 

Schonell, F.J., and Rorke, A. A second survey of the effects of a sub-
normal child on the family unit. American Journal of Mental Defic-
iency, 1956, 64, 862-868.

 

Schonell, F.J. and Watts, B.H. A first survey of the effects of a sub-
normal child on the family unit. American Journal of Mental
Deficiency, 1956, 61, 210-219.

 

 

Tizard, J. and Grad, J. The mentally handicapped and their families:
A social survey, London: Oxford University Press, 1961.

 

 

Wolfensberger, W. Counseling parents of the mentally retarded, pp.
329-400 in Baumeister, A.A. (Ed.) Mental Retardation: Appraisal,
education, and rehabilitation. Chicago, Aldine Publishing Co.
1967.

 

 

General References

 

Goode, W.J. and Hatt, P.K. Methods in social research, New York:
McGraw-Hill Book Co., Inc. 1952.

 

Kahn, R.L. and Cannell, C.F. The dynamics of interviewing, New York:
John Wiley and Sons, Inc. 1963.

 

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