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Objective
This section provides background information about selection of a
conceptual model and development of an operational model as well as other
resources available to help guide the study design.
Conceptual Models
Meeting participants mentioned several conceptual models that could
provide a framework for designing appropriate studies of TBI outcomes. It
is important to select an appropriate conceptual model before finalizing
an operational model and selecting specific measures.
- Institute of Medicine (IOM) Model
The original IOM model links
the four main components of the disabling process–pathology,
impairment, functional limitation and disability. The modified IOM
model removes disability from this chain to emphasize that disability
is not an individual characteristic but a result of interaction
between an individual and his or her environment. (Brandt EN Jr., Pope
AM, editors. Enabling America: Assessing the Role of Rehabilitation
Science and Engineering. Washington, DC: National Academy Press;
1997).
- World Health
Organization (WHO) Model (ICIDH-2)
This WHO model of disability
addresses both the individual factors, including body systems,
impairment, activity, and social participation, and the role of the
environment. The model is still under revision and has not yet been
adapted for children, although work is in progress. Meeting
participants recommended that CDC consider adopting this model, which
is being applied to disability research internationally. (ICIDH-2:
International Classification of Functioning, Disability, and Health
Website. Available at: www.who.int/icidh/. Accessed January 10, 2001;
Simeonsson RJ, Lollar D, Hollowell J, Adams M. Revision of the
International Classification of Impairments, Disabilities, and
Handicaps Developmental Issues. J Clin Epidemiol 2000;53:113-124.)
- Family Systems Model
This model assesses the
family environment, including structural dimensions such as family
size and family composition, as well as qualitative aspects such as
family stressors, sources of internal and external support, and areas
of strength and need. (Kalesnik, J. Family assessment. In Nutall EV,
Romero I, et al. editors. Assessing and Screening Preschoolers:
Psychological and Educational Dimensions (2nd ed.). Boston:
Allyn and Bacon, Inc; 1999. pp. 112-125.)
- Developmental Models
A developmental model is a
framework that recognizes a wide range of factors including the
intricate matrix of a changing child and environment, evolving
familial and societal expectations, and the link between disrupted and
normal development. (Pynoos RS, Steinberg AM, Wraith R. A
developmental model of childhood traumatic stress. In: Cicchetti E,
Cohen DJ, editors. Developmental Psychopathology. Vol 2: Risk,
Disorder, and Adaptation. Wiley series on personality processes. New
York: John Wiley and Sons; 1995. pp. 112-125. Brett AW, and Laatsch L.
Cognitive rehabilitation therapy of brain-injured students in a public
high school setting. Pediatric Rehabilitation 1998;2:27-31.)
Consideration of developmental models is critical in designing studies
of longer-term outcomes of TBI in children so that the studies address
not only the effects of the injury but also how these effects relate
to development.
Models of disability (IOM or WHO) are the
most useful as overall guides for the study design. Family systems and
developmental models suggest key areas to be considered for inclusion in
the study.
Operational Models
Operational models are one-page summaries of topics and variables to
consider in planning studies of outcomes of TBI in young people. Meeting
participants reviewed and discussed draft operational models, which
were prepared before the meeting. Figure 1 (General Model) and Figure 2
(Service-Related Model) show the topics and related variables recommended
by the working group.
These topics and variables were suggested
by researchers, advocates and professionals. It is also important to
conduct qualitative research, such as focus groups, with families and
children or youth with TBI to understand the key issues from their
perspectives. Minority populations should be included in qualitative
studies to increase understanding of the unique experiences and service
needs of these subpopulations.
To date, studies have focused largely on
determinants of secondary conditions and adverse outcomes, but studies
must also be developed to identify factors related to good outcomes.
Other Resources
Meeting participants mentioned several other resources that could be
used to guide selection of research priorities. These resources include:
- Healthy People 2010 Health Objectives
for children and people with disabilities
- Declarations of children’s rights
- HRSA/Maternal and Child Health Bureau
rights of the child
- United Nations Convention on the Rights
of the Child.
To read portions of these documents, see
Appendix C of this report.
More About the Domains for Assessing
Service Needs
Parents and advocates report that
appropriate services for children and youth with TBI are lacking. Studies
of outcomes of TBI among this population should document the needs for
services and the barriers to receiving them. For that reason, meeting
participants developed a separate operational model specifically for these
issues (Figure 2).
For clarification, a more detailed
description of some of the important barriers that were discussed follows
below:
- Lack of referrals made by healthcare
providers.
- Caregivers not aware of available
services.
- Lack of appropriate identification of
TBI as the underlying reason for the need for the service or
misidentification (e.g., instead of being identified as having a TBI,
the child is diagnosed as having a learning disability).
- Lack of appropriate services and service
providers with expertise specifically in TBI.
- Lack of insurance or inadequate
insurance; e.g., an HMO or PPO may not have appropriate service
providers.
- Continuation of pre-injury services;
children may tend to receive the same kind of services after the TBI,
even if these services are not appropriate for their specific post-TBI
problems.
- Lack of acceptance of services because
they are not perceived as culturally relevant.
- Lack of appropriate educational
services; the Individualized Educational Plan (IEP) does not meet the
child / youth's need or schools may tend to identify conditions they
know how to manage. Research is needed to determine whether
classifying children as having a TBI affects how they are managed in
school.
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