Intervention Services for Families of Preschool Children
with Special Needs:Implications of Research from the UVA Child-Parent
Attachment Project
Symposium for theSoutheastern Eco-Community Conference
October, 1995, Roanoke, Virginia
Overview of the Child-Parent Attachment Project (CPAP) and its goals
Preston A. Britner, Chair
The Child-Parent
Attachment Project at the University of Virginia is focused on
family functioning and adaptation in families with and without
a young child with special needs. The framework for the research
is based in large part upon attachment, family systems, and ecological
theories. The on-site data collection protocol was the same across
diagnostic groups and included self-report measures, clinical
interviews, behavioral observations, and cognitive and behavioral
assessments of the target child, the mother, and the father (or
father figure).
The CPAP sample consists of 150 families of preschool
children with severe Cerebral Palsy (CP), mild CP, epilepsy, or
no medical diagnosis (controls). Children with mild CP were functionally
locomotor, whereas those with severe CP could not walk, crawl,
roll, or scoot on their own. There was a wide range in the severity
and control of seizures within the epilepsy group. Participants
came from rural, suburban, and urban settings in five Mid-Atlantic
states. Participants were either recruited at one of several
hospitals, clinics, or public health departments, or were contacted
by a mailing from a medical clinic. Results of comparisons from
the project have broad implications for community-wide early intervention
services for families of children with special needs, above and
beyond the clinical and basic research findings from the study.
Parents' reactions to their children's diagnoses: Implications
for delivering diagnoses and supporting families
Preston A. Britner
We examined mothers' representations of one form of trauma to
the caregiving system: the experience of receiving a diagnosis
of a chronic illness or disability in their child. Learning that
one's child has a disability or chronic illness is another possible
trauma to the caregiving system. It introduces information and
experience about a child, and about parenting, that challenge
existing beliefs, feelings, and expectations. Parents associate
learning of their child's diagnosis with a sense of loss or trauma,
and report grief reactions similar to individuals who experience
the loss of someone through death including phases of shock and
denial; emotional disorganization featuring anger, guilt and disillusionment;
and adjustment or acceptance (Blacher, 1984; Bowlby, 1980; Burden
& Thomas, 1986; Waisbren, 1980). We used the Reaction to Diagnosis
Interview (RDI; Pianta & Marvin, 1992) with 110 mothers and
85 fathers of children ages 15 - 50 months with cerebral palsy
or epilepsy to examine resolution of loss/trauma associated with
parent's learning that their child has a disability or chronic
illness. Parents report this to be a period of crisis; the family's
routines are disrupted, expectations for the child may be challenged,
parents may feel guilty or may search for a reason/cause, and
their sense of themselves as effective nurturers and protectors
is challenged. This experience represents a specific threat to
the biological function of the attachment-caregiving system because
the parent cannot/could not protect the child from the diagnosis
and related conditions. Thus the parent is faced with undertaking
extraordinary caregiving tasks under circumstances that challenge
very basic ideas of the function of a parent (e.g., protection
from harm). The RDI probes for episodic recall of events and experiences
at the time of diagnosis, emotions associated with that experience,
change in these emotions since the time of diagnosis, and the
parents' search for reasons for this experience. Parents' responses
to these questions reflect representations of themselves are caregivers,
and their child, in relation to this specific trauma. These representations
contain elements of resolution, and lack or resolution, that are
hypothesized to be organized as Resolved and Unresolved patterns
within systems of caregiving representations. Mothers were classified
as Resolved or Unresolved with respect to their child's diagnosis,
and grouped into subcategories within these major groups. Roughly
half of these mothers were classified as Unresolved with respect
to their child's diagnosis. Diagnosis type, severity of condition,
developmental age, and time since receiving diagnosis were all
unrelated to the distribution of Resolved/Unresolved classifications.
Patterns of resolution in which cognitive strategies predominated
were the most frequent form within the Resolved classification.
Findings provide support for the organizational nature of caregiving
representations as well as a number of implications for clinical
practice and for the delivery of diagnoses and subsequent support
services. A number of implications for practice are suggested
by the results and by mothers' responses to the interview questions.
Anecdotally, responses to the interviews offer insight into the
extent to which the process by which the health care system delivers
diagnosis and feedback information to parents can be a factor
that, at best, does not facilitate resolution and in some cases
mitigates against it. Frequently in our sample of families, situations
are described in which parents learned of their child's diagnosis
through means other than hearing it from their health care provider.
These means include for example reading a letter form one physician
to another that was not intended for them to read. These experiences
trigger anger and resentment that can be preoccupying to vulnerable
parents. Other parents describe circumstances in which they were
given information in highly technical terms, were not told what
they could expect to happen, or where to turn for help. These
parents clearly state the need for sensitive delivery of accurate
information using terms they can understand. In many cases parents
seem to feel that some health care professionals are afraid to
be the bearers of bad news and underestimate parents' coping skills.
In addition, it is our impression that the diagnostic process,
often prolonged over many months and many visits to many professionals
is itself traumatizing to caregivers and the caregiving system.
We are just beginning to understand the effects of this trauma
for parents, and for their relationship with their children.
To the extent that the health care delivery system can provide
accurate information, in understandable terms, and the opportunity
to integrate the difficult emotions and changing perceptions of
self and child that are a part of this period, it will enhance
the process of resolution.
Marital quality within
the family system
Thomas F. Sheeran
Much of the research investigating
the quality of marital relationships has focused upon analysis
and interpretation of interactions between members of the spousal
dyad (see Gottman, Markman, etc.). A common methodology has been
to code behaviors of the dyad interacting in a conflictual, semi-intensive
situation. Characteristics of interactive behaviors (e.g., communication
style) have then been correlated with other measures of marital
quality and marital outcome. Rather than describe the marital
relationship via observation of spousal interaction, the purpose
of this study is to characterize the mother's internal representational
model of the relationship. In line with Bowlby (1969) and Sroufe
(1990), it is presumed that ongoing interactions with the spouse
result in an internalized, organized model of the relationship
within the individual. This model can be accessed via structured
interview questions that focus upon the relationship in question.
A sample of 160 mothers were asked to discuss various aspects
of their spousal relationships. Systematic classification of these
reports is expected to yield descriptive data regarding various
cognitive and affective aspects of the mothers' representational
models of their marital relationships. These results will be
correlated with other validated measures of marital quality. Clinical
impressions of structured interviews suggest that marital quality
is affected not only by factors unique to members of the spousal
dyad, but also by other influences within the family system.
In particular, mothers of children with special needs have been
observed to express degradation in the quality of their marital
relationship due to the intensive needs of their children. Clinical
and social implications of these observations are discussed, as
well as the utility of assuming a family systems perspective in
the study of marital quality.
Father involvement in
caregiving and interactions
Jeffrey Olrick
The role of fathers
in family functioning was investigated from a systems-level perspective.
Several investigators have called into question the practice
of investigating parent-child interactions separately and have
suggested implications for studying the family (rather than several
separate dyads) as the unit of analysis. Fathers' and mothers'
involvement in daily caregiving was compared on the basis of parent
report and parenting behaviors coded during a taped lunch interaction.
The purpose of this study is to describe the parenting subsystem,
rather than simply individuals, within a family interaction situation.
A sample of 60 families with children diagnosed with mild or
severe cerebral palsy was studied to describe patterns of parenting
behavior during a lunch situation. Discrete behaviors were coded
and cluster analyzed. In addition, parents were rated on a global
scale measuring parent system sensitivity. The scale is a modified
version of Ainsworth et al.'s (1978) Sensitivity scale. Ratings
were made on the basis of the parental system's ability to detect
child signals, correctly identify the significance of the signals,
and respond to them appropriately so that the child has his/her
needs adequately met. Clinical implications include a greater
understanding of the family environment as a principle unit of
interaction within which the child functions. In particular,
the study highlights the role and functioning of the parenting
subsystem. Implications for intervention services include the
need to identify fathers' level of involvement and create a greater
awareness of how the child's environment is affected by father's
involvement (or lack thereof ) in the family system.
Family cluster types and early intervention needs
Robert P. Dalton
As part of the study, mothers (84 white, 3 African American) of
87 children (ages 15 to 44 months) with mild or severe cerebral
palsy (CP) or no diagnosis (controls) completed the 15 subscales
of the Dyadic Adjustment Scale, the Parenting Stress Index, the
Support Functions Scale, and the Inventory of Social Support.
Principle components analysis revealed few across-measure loadings.
Correlational and analysis of variance approaches showed that
mothers reporting high levels of marital/relationship satisfaction
also reported less parental distress and considered their families
as more helpful as sources of social support. Mothers of children
with CP reported more social support needs and larger formal --but
smaller informal-- support networks than did mothers of controls.
Mothers of children with CP (severe or mild) reported higher
levels of parenting stress than did mothers of controls. Self-report
measures were largely uncorrelated with demographic variables.
Cluster analysis of self-report measures yielded a 5-cluster
solution, with no diagnostic group differences across clusters.
Literature on family relations and child disabilities suggests
that self-report measures of family function may be tied to the
nature and severity of the child's medical diagnosis. This paper
represents an initial attempt to examine whether paper and pencil
measures tap common underlying constructs of family functioning,
and to determine if there are differences in the interrelationships
of response patterns across diagnostic groups in a sample of families
who have children with severe cerebral palsy (CP), mild CP, or
no medical diagnosis (controls). Much of the research on, and
interventions designed to assist, families of children with chronic
disabilities makes assumptions about associated negative outcomes.
Some research exists to support these assumptions in the areas
of: marital satisfaction, adjustment, or quality (e.g., Levy-Schiff,
1994; Sabbeth & Leventhal, 1984); increased parenting stress
(e.g., Gallagher, Beckman, & Cross, 1983; Sargent & Liebman,
1985); and, need for social supports (e.g., McLinden, 1990; Roberts
& Magrab, 1991). Other early intervention studies by Shonkoff
et al. (1992) and research using comparing control groups (e.g.,
Darke & Goldberg, 1994) have focused less on differences between
families of impaired or healthy children, and instead assessed
family adaptation and child and family influences on functioning.
There remains a need for a family systems approach to studying
family functioning (Crnic, Friedrich, & Greenberg, 1983; Kazak,
1987; 1989; Kazak & Marvin, 1984). Patterns of linkages between
measures of functioning in family types (e.g., Mink & Nihira,
1986) and the study of the different pathways to similar outcomes
may prove a more fruitful area for research and intervention.
In our work, we found that clusters of family types and diagnostic
group were unrelated. The similarity of patterns (correlations)
of self-report measures of family functioning across diagnostic
groups has interesting implications for services, intervention,
and models (Mink, Blacher, & Nihira, 1988). Indeed, many
of the same "rules", or inter-relationships of perceptions
of parts of the family system, apply to families who have children
with or without disabilities. Parenting stress was the key component
for differentiating clusters of families, for control as well
as CP families. Mothers of children with CP reported greater
parenting stress and needs for support (accompanied by perceptions
of supports as less helpful) than controls. With similar patterns
of measures across groups, interventions should be similar with
families experiencing high parenting stress. Among sources of
supports, those intervening with families of children with chronic
disabilities should consider the informal and familial components
in addition to the formal (e.g., early intervention) supports.
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Page created by Kathleen C. Borowitz, October, 1995