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Social Work in Health Care

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The Impact of a Fmaily-Centered Case Management Approach

Maureen O. Marcenkoa; Linda K. Smithb

a
Assistant Professor, Department of Mental Health Sciences, Hahnermann University, Philadelphia,
PA, 19102-1192, b Assistant Director of Epidemiology, Michigan Cancer Foundation, Detroit, MI,

To cite this Article Marcenko, Maureen O. and Smith, Linda K.(1992) 'The Impact of a Fmaily-Centered Case Management

Approach', Social Work in Health Care, 17: 1, 87 100

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The Impact of a Family-Centered

Case Management Approach

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Maureen 0.Marcenko, PhD

Linda K. Smith, PhD

ABSTRACT. Two urban programs of family-centered case management services were established for families of children with both
a developmental disability and a chronic health condition. These are
children who present siWcant caregiving demands due to the
long-term and severe nature of their disabilities. Thirty-two mothers
were interviewed within the family's first month in the project and
reinterviewed approximatelyone year later. The results indicate that
more families received respite care, nursing services, training in the
care of the child, educational services and transportation to school
at follow-up than had been receiving those services at baseline.
However, families still indicated high service needs for recreational
activities, life planning, regular day care, legal services, and speech
therapy at follow-up. Mothers indicated that program services were
helpful in obtaining services, financing, information, support, and
Maureen 0.Marcenko is Assistant Professor in the Department of Mental
Health Sciences at Hahnemann University, 1427 Vine Street, MS 988, Philadelphia, PA 19102-1192.
Linda K. Smith is Assistant Director of Epidemiology at the Michigan Cancer
Foundation, Detroit, MI.
This article is based on research supported by a grant from the Michigan Developmental Disabilities Council. The views expressed herein are solely those of
the authors and do not represent the opinions or policy of any agency of the State
of Michigan. We appreciate the cooperation of the agencies which participated
in this evaluation and particularly the input of social workers Joan Blough and
Sharon Dietrich.
This research was conducted while Maureen Marcenko was Assistant Professor, School of Social Work, Wayne State University and Linda Smith was Research Coordinator at the Developmental Disabilities Institute, Wayne State University.
Social Work in Health Care, Vol. 17(1) 1992
O 1992 by The Haworth F'ress, Inc. All rights reserved.

87

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SOCL4L WORK IN HEALTH CARE

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advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have
difficulties coping. The model employed is described and the practice and policy implications of the findings discussed.
Public policy and practice have moved away from institutional care to
family care of children with developmental disabilities and special health
care needs. At the same time, advances in medical technology have made
it possible for many children with severe disabilities or health problems
to survive to young adulthood and beyond. These trends have converged
to create a situation where families are caring for their children with
serious debilitating conditions, often through adulthood.
Research into the impact upon the family -caring for a child with developmental disabilities or a chronic health condition is extensive and
spans several decades. The findings of earlier researchers are similar to
those of many current researchers, demonstrating the persistence and
pervasiveness of the stress families experience, and the small gains made
in relieving their burden. For instance, in 1962 Olshansky described the
chronic sorrow families experience when they have a child with developmental disabilities. Almost twenty years later, Wikler, Wasow, and Hatfield (1981) revisited this topic and established its relevancy for families
today. In one of the f i s t comprehensive studies of family stress, Schonell
and Watts (1956) found that a third of mothers said they had no help of
any kind with their children and 36% stated the desire to call upon someone occasionally to gain relief. Twentyeight percent of the families had
moved to accommodate the educational, medical, and special environmental needs of the child, and 52% found it impossible to indulge in
daily social activities. The most pressing worry for 27% of mothers was
future care for their child once the parents were no longer able. Subsequent researchers have documented these findings and studied other aspects of family life. These researchers have provided substantial evidence
for the social isolation, stress, financial strain, and dficulties conducting
normal family activities families experience (Beckman-Bell, 1981; English & Olson, 1978; Kazak & Marvin, 1984; Kom, Chess & Femandez,
1978; Marcenko & Meyers, 1991).
There have been strides in addressing the needs of individuals with
disabilities through legislation such as mandatory special education (P.L.
94-142, 1975) and guaranteed comprehensive A d coordinated programs
of vocational rehabilitation (Rehabilitation Acts of 1973 and 19781. Farnily support services have not kept a similar pace, despite the fact that

Maureen 0.Marcenko and Linda K. Smith

89

most persons with developmental disabilities live with their families

(Bruinicks, Hauber, & Kudla, 1979). In 1975, only four states provided
support to families with a member who had a disability. By 1984, 22
states reported programs of support and/or cash subsidies to this population of families, although many of these programs were limited in scope
(Bates, 1985).

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CASE MANAGEMENT

Families of children with developmental disabilities and chronic health

conditions require a multiplicity of services across the life cycle. However, families must negotiate a mass of services which is characterized by
diversity and fragmentation(Hobbs, Perrin, & Ireys, 1985). Case management has come to be the accepted method for accessing, coordinating,
and monitoring services for persons with multiple service needs. The
initial goal of case management services is to identify and fulfill a spectrum of family needs, and over time to respond to the changing and
emerging needs of families (Moxley, 1989).
Although case management services for children with special needs
and their families has intuitive appeal, there is a dearth of research regarding its efficacy for this population. One exception is the work of
Singer, Irvin, Irvine and Hawkins (1989). In this study, families of children with developmental disabilities were randomly assigned to a modest
service group consisting of respite care and case management or a group
which received an intensive interventionconsistingof stress management,
parenting skills training, support groups, and additionalcommunity-based
respite care. Mothers in the intensive group showed significant improvement on measures of depression and anxiety. These findings suggest that
comprehensive services provided directly to families can be more efficacious than case management alone.
PURPOSE OF THE STUDY

The purpose of this study was to evaluate the impact of a family-cenfor families caring for children with both
tered c&e management
a develo~mentaldisabilitv and a chronic health condition. These are
children b h o present sighcant caregiving challenges to their families
due to the often serious nature of their disabilities, their possible reliance
on medical technology, and the chronicity of their conditions. Program

90

SOCIAL WORK IN HEALTH CARE

impact was measured by access to community based family support services, satisfaction with project services, maternal l i e satisfaction, and the
coping ability of non-handicapped siblings. Although not considered
indicators of program impact, coping mechanisms of mothers and nonhandicapped siblings and mothers' perceptions about how the presence
of a child with handicaps influenced the marital relationship, were also
examined.

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SERVICE MODEL

Two community mental health agencies located in separate urban

Michigan counties were funded as demonstration projects to develop
family-centered case management programs. The projects were philosophically grounded in a familycentered approach which recognizes the
family as the constant in the child's life and thus emphasizes parent/professional collaboration, and the responsiveness of the service system to family needs (Family Resource Coalition Report, 1988).
At a progranunatic level, the projects were based on a services management model which is defmed as a life-long, goal oriented process for
planning and coordinating the range of programs and supports needed by
families to assure service accessibility, continuity, quality of care, and
responsiveness. The goal of services management is to maximize the
potential of persons with disabilities and their families for independence,
productivity, and community integration. Functions include, but are not
limited to: outreach, coordination, brokering, monitoring, advocating,
training, and interdisciplinary team planning (Michigan Developmental
Disabilities Council, undated).
The projects developed models of service for families of children with
high care needs by bringing together a familycentered philosophy with
a services management approach. Staffmg of the projects consisted of
masters-prepared social workers, in collaboration with other disciplines
such as nursing, medicine, and education as appropriate. The major activities of project staff included working with parent groups, arranging
support services, obtaining financing for services, counseling, and administration.
Families were determined eligible for the project if they had a child
with both a developmental disability and a significant
health problem. A
plan of service was developed collaboratively with each family based on
input from families, project social workers, and other professionals involved with the family such as the physician, supervising nurse from the

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Maureen 0.Marcenko and Linda

K. Smith

91

home health agency, physical and occupational therapists, and school

personnel. Service plans were reassessed quarterly.
The services were family focused, taking into account the needs of all
family members. However, it was the experience of staff that mothers
were usually responsible for planning and arranging services for the
family. Thus, the primary contact was generally with the mother. In an
attempt to incorporate the entire family, social workers were available
during evening hours to accommodate the work and school schedules of
parents and children. Interventions were conducted with families in their
homes, the hospital, schools, and at the social service agency.
As the projects evolved over a three year period, social workers report
that they increased their emphasis on strategies designed to empower
families. This took the form of parent support groups, informational and
skill building sessions for parents so that they could advocate on their
own behalf, and the use of parents as paid consultants to assist project
staff in developing resources and supporting other families. According to
project staff, the integration of parents into the service delivery process
promoted a sense of cooperation and joint responsibility between staff
and families. Project staff also indicated that they often developed a
mutually supportive relationship with families instead of an adversarial
one. and this in turn reduced staff stress.

METHODOLOGY
Subjects
Subjects were 32 families with children who had both a developmental
disability and a significant health problem and who were referred to one
of the two demonstration projects. Families were referred by hospital
staff, community agencies, other families, or self-referred.
There were no signifkant differences between families served by the
two agencies in income, marital status, mothers' education, or age, race
and sex of the child. Furthermore, the service models were similar in
design and approach. Therefore, the two groups of families were combiied for the purposes of analysis.
The demographic characteristics of the sample are presented in Table
1. The developmental disability most frequently represented among the
children was mental retardation, followed by cerebral palsy. The medical
conditions of the children were varied and included mucopolysaccharidosis, diaphragmatic hernia, and bronchial pulmonary dysplasia. In terms

S0CU.L WORK IN HEALTH CARE

92

Table I

Sex of Child
Male
Female

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Race of Child
White
African American
Latino
Aqe of Child
5 3 years
4 to 6
7 to 9
10 to 12
13 to 17
18 to 26
Total Family Income
5 10,000 '
10,001 to 20,000
20,001 to 30,000
30,001 to 40,000
> 40,000

Marital Status
Married
single

Education of Mother
< High school
High school
some college
University graduate
-

. .

--

..- . -

# of hours Mother
5 10
11 to 15
16 to 30
31 to 40

--

.-

Employment of Mother
, Yes
NO

,
employed

35
1

65
11
22
22
44

Employment' of Spouse
(
Yes
NO
# of hours Spouse employedfwk.
5 40
4 1 to 50

51 t o 69

52
17
17

Maureen 0.Marcenko and Linda K. Smith

93

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of the medical care required for the child, the mean number of doctors
seen by the children was 5 and the range from 1 to 15. Only 5% of the
children did not take any regular medications, with a mean of 3 medications and a range from 0 to 10. Forty percent of the children required
special feeding equipment such as gastrostomy tubes or naso-gastric
tubes, 29% u s 4 respirators, 24% required suctioning, and 21% had cardiac or apnea monitors. Over half of the children (56%) needed attention
several times a night after parents were in bed. The type of attention
ranged from adjusting equipment, repositioning, checking on breathing
and seizure activity to cuddling and calming the child down. Approximately 90% of the families indicated that they had some type of health
insurance for their child, but over a third indicated that this insurance
was inadequate.

In order to measure how social workers allocated their time, they were
asked during two typical months to estimate the percentage of time spent
on each of their primary functions. Typical month was defined as a
month in which there was no significant departure from the usual schedule of the social worker such as vacation or maior holiday. The ~rimarv
functions included working with parent groups, arrangGg for support
services, obtaining financing, counseling and administration.
A pre- and post-test design was utilized to evaluate program impact.
The child's primary caregiver, who in all cases was the mother, was
interviewed using a semi-structured questionnaire within the first month
in the project and reinterviewed approximately one year later. The initial
interview was completed by project social workers and the follow-up
interview was completed by an interviewer who was hired and trained by
the evaluators. An interviewer independent of the service program was
used at follow-up so that families would feel free to give their opinions
about the program.
The intake instrument consisted of the following: basic socio-demographic data; questions regarding the medical condition of the child and
the caregiving demands; questions about service needs and use; items
related to family stress and coping and maternal life satisfaction; the
family's expectations of the program; and data regarding service utilization and satisfaction. The follow-up instrument was similar to the intake,
with the addition of specific questions about the helpfulness of the program. Qualitative data regarding the strategies social workers employed
to assist families were collected through summaries describing case activity each quarter.

SOCLAL WORK IN HEALTH CARE

94

All quantitative data were entered on computer using SPSS-X and

crosstabs and t-tests were performed, depending on the level of the data.
Qualitative responses were grouped according to theme and described.

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Findings

Regarding the allocation of time, Figure 1 indicates that social workers

devoted the majority of their efforts to working with parent groups, obtaining financing, and arranging for support services. Counseling was a
relatively minor aspect of the overall programs. This was a result of two
factors. First, the children had such intensive care needs that social workers spent the majority of their time focusing on in-home support such as
nursing and respite and obtaining financing for these services. Second,
families were referred for counseling if there was a need which could not
be met by the social workers given the constraints on their time and the
other needs of the family.
Service needs assessment and changes in service use were focal points
of the impact evaluation. Table 2 shows services for which there was an
increase in use between intake and follow-up. The data are broken down
by whether or not the service was used; if used, by satisfaction; and if
not used, by whether it was needed or not needed. The most impressive
increases in service use were in regular respite care and home nursing.

_W_Y

Counselingv

_/ Work w/
Parent
-- - Group
-

Maureen 0.Marcenko and Linda K. Smith

95

Table 2
Increases in Service Use Between Intake and Follow-UD

USED

Satisfied

service

Not
satisfied

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Regular respite care in

home

32'
772

Home nursing care

36
61

Education services

Routine medica1,service

=
=

Intake
Follow-up

Not
Needed
%

Needed
%

11
17

139
3

7
13

14
16

59
84

16
3

63
68

20
8

26
33

15
15

11
7

48
44

78
100

13
0

'

'

18
3
36
10 8
16
7

Training in care of child

Transportation to school

'

NOT USED

'

13
16

Increases were also noted in the frequency with which families used
education services, trainiig in the care of the child, transportation to
school, and routine medical service, although these changes were small.
Also of interest are the service needs which persist regardless of the
intervention. Table 3 shows that families still indicated a high level of
need for family and child centered recreational activities, life planning
services, legal services, regular day care, and speech therapy.
Mothers were asked about the ways in which they were helped by
project staff. They identified greater access to services, assistance with
financing of services, opportunities to network with other families, emotional support from other families and staff, information about care of the
child, and the development of advocacy skills. One mother summed it up
when she said, "Our family became stronger and,we don't feel like
we're alone."

SOCIAL WORK IN HEALTH CARE

96

Table 3
._
_-._I
Bish Service Needs at Intake and ~ollou-UD

USED

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service

NOT USED

satiefie&

Not
satistied

Needed

Not
Neede

61
48

25
33
29
43

Recreation activities
(family)

111
1 5 ~

4
4

Life planning services

(child)

14
3

57
43

Recreation activities
(child)

7
17

0
3

46
40

'

..-

Legal services
Regular day care
(child)
Speech therapy
(child)

' == Follow-up
Intake
-

Mothers were also asked to rate satisfaction with their current life
situation at both intake and follow-up. Maternal ratings were measured
on a ten point L i e r t scale from (1) "worst possible life" to (10) "best
possible life." Maternal life satisfaction sigmcantly increased from 5.39
at intake to 6.25 at follow-up (t (27) = 2.41, p < .02), indicating that
mothers were generally more satisfied with their life situation at followup than they were at intake.
The coping mechanisms mothers utilized were determined by the use
of a qualitative measure. Mothers were asked in an open-ended format
"What helps you cope with the demands of your child's care?" Their
responses ranged from the love that they felt for their child, such as: "a
funny, hard-working, loving handicapped son"; "loving her, wanting her
home, and being her mom"; to the support they had from others: "a
great husband and wonderful sons"; talking to understanding people";
to informal and formal suppons: "being respected for my decisions and

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Maureen 0. Marcenko and Linda K. Smith

97

input regarding my son's care"; "nursing care and keeping busy"; to

their faith: "prayer and my relationship with Jesus."
As a measure of the coping ability of non-handicapped siblings, mothers were asked on a five point Likert type scale from (1) "excellently"
to (5) "poorly" how well their non-handicapped children wped with the
demands of the child with handicaps. There was a slight decrease in
sibling coping between intake (M = 2.41) and follow-up (M = 2.77),
although the change was not significant. (Lower scores are more positive.)
In an open-ended format, mothers were asked to discuss the ways in
which their other children cope with the demands of the child with handicaps. In comparing open-ended responses at intake and follow-up, in no
case did mothers report an improvement in coping on the part of nonhandicapped siblings. Illustrative of their responses are the following
quotes: "We have to drag both kids to the hospital and they don't like
it. They can't participate in school events." "Our youngest one is not
talking, has temper tantrums, is not sleeping and doesn't want to leave
us." "They feel frightened and upset when our handicapped child is
having problems."
Another measure of the impact of caring for a child with special needs
is the inhence felt in terms of the marital relationship. When asked
about how their marriages had been affected, mothers were equally split
between positive and negative responses. Positive comments included:
"It has made us a stronger, closer, more tired couple." "My husband
and I are now more open with our emotions." "It has made us rely on
each other." Other mothers spoke of the strain on their marriage: "We're
finding it real stressful; it's not a normal Life; we have no privacy because we share our lives with too many people." "The illness has caused
a great strain and magnified other problems."
DISCUSSION
This study is limited in that there was no control group therefore it is
not known whether families would have experienced the same gains
without benefit of the case management services. Furthermore, generalizations are limited by the fact that families were referred for or sought
out the services of the projects, resulting in bias due to self-selection.
Despite these limitations, it appears that one of the major strengths of
the family-centered case management projects was in their ability to
access certain services for families. The results show that families more
often received respite care, nursing services, training in the care of the

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98

SOCIAL WORK N HEALTH CARE

child, educational services, and transportation to school. However, families continued to experience high service needs for recreational activities,
life planning, regular day care, legal services, and speech therapy.
These results indicate that the projects are limited by the services they
can piece together from their communities. Although there has been an
increased emphasis on family support services, this generally translates
to respite care, nursing services, and training in the care of the child at
the service system level. Services which are not specialized but are more
likely to be part of the general supports provided by the community, such
as recreation or regular day care, were not accessible to families of children with disabilities and health problems.
Another major concern raised by both families and social workers was
problems with health insurance. Although the majority of families had
some type of health insurance, over a third felt that their insurance was
inadequate. Health insurance problems included differing interpretations
of covered services between families and insurance companies; a bias
towards funding of inpatient as opposed to family based care; a lengthy
and tedious process for the application of special federal programs to
fund family care.
The difficulties obtaining funding for services were borne out in the
amount of time social workers devoted to this function. In addition to
spending 20% of their time arranging services, social workers spent another 25% of their time arranging for fmancing. Furthermore, social
workers reported that this did not change with the family's longevity in
the program. Social workers found themselves continually working on
financing because of reapplication and ongoing documentation requirements. T i e spent on attaining funding and arranging services detracts
from the amount of time and energy social workers and families can
focus on other concerns. This may in part explain why non-handicapped
siblings did not seen to fare any better as a result of the family's involvement with the project.
When mothers were asked how well their non-handicapped children
cope with the caregiving demands of the child with handicaps, there was
no signif~cantchange betweenintake and follow-up. Openendedresponses
confirmed the difficulties non-handicapped siblings experience, including
problems sleeping, anger, fear, resentment, and jealousy. Other familycentered case management programs should consider specific approaches
to assist non-handicapped siblings such as support groups.
Matemal life satisfaction signif~cantlyimproved between baseline and
one year follow-up. This may be related to the many benefits such as
access to services, networking with other families, and advocacy, which
mothers derived from the projects.

Maureen 0.Marcenko and Linda K. Smith

99

Although mothers overwhelming evaluated the projects positively,

project staff were limited by systemic constraints outside of their control.
'Ihese included lack of some services in the community, problems accessing non-specialized services, and difficulties with insurance. In order to
provide meaningful familycentered care, it is necessary to address these
issues on a policy level. Similar projects in other communities will experience the same - l i t a t i o n s unless policies are established to increase
availability of and access to services. Shides have been made in the
family support arena, but it is apparent from the results of this study that
there is much that still needs to be done if family burden is to be reduced.

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RECOMMENDATIONS

The findings indicate that family-centered case management services

are beneficial to families particularly in accessing existing services and
increasing maternal life satisfaction. Policy and program recornmendations to social workers concerned with this population of children and
families include:
1. Develop and implement family-centered case management services
to assure that families are linked with existing services.
2. Increase community capacity to integrate children with special
needs and their families into generic services such as day care and
recreation.
3. Simplify the application and financing procedures for family support services.
4. Develop support servicesfor siblingsof children with special needs.
5. Support a universal program of health care or health insurance
which favors reimbursement for home care and is administratively
simple.
REFERENCES
Bates, M.V.(1985). State family supportlcash subsidy programs. Wisconsin
Council on Develo~mentalDisabilities.
Bruininks, R.H., ~aubkr,F.A. & Kudla, M.J.(1979). National survey of community residential facilities: A profile of residences and facilities in 1977. M i e ap&, MN,university of &esoia.
English R.W. & Olson, K.K. (1978). Parenting handicapped children: Their

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100

SOCIAL WORK IN HEALTH CARE

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