This dissertation project, undertaken in conjunction with the Brain Injury
Association of Oregon (BIAOR), is an attempt to improve and standardize the
information that parents and caregivers receive after a child or adolescent experiences a
traumatic brain injury (TBI).
The project consisted of three phases. The first was an information-gathering and
data collection phase, including a review of the literature, an online survey of health care
providers, and telephone interviews with TBI survivors and their parents and caregivers.
The second phase was to develop a parent handbook containing the information that
health care providers and survivors and their parents identified as important. The third
phase was to develop the plan for distribution of the parent handbook.
A review of current literature presented TBI in children as associated with an
array of short and long-term post-injury deficits. These deficits pose a challenge to TBI
survivors in a variety of functional domains. The literature base identifies that parents
may receive little information about TBI. Education serves to empower parents to
manage their child's post-TBI rehabilitation, and supports positive family coping which
is linked to an improved outcome.
An online survey was conducted, with two separate mailings of post cards sent to
2700 randomly selected professionals in Oregon representing the disciplines of medicine,
psychology, nursing, speech and language pathology, physical therapy and occupational
therapy. Health care providers were invited to complete the online survey regarding
current practices and recommendations in terms of education and referral. An electronic
mailing was also sent to health care providers who are members of BIAOR. Twenty-nine
health care providers responded and provided qualitative information used to develop the
parent handbook. They identified an array of immediate post-injury complications, longterm
sequelae, and needs and resources for advocacy and referral.
Telephone interviews of 15 child, adolescent and young adult TBI survivors and
their parents were conducted. Participants were found by advertising on the brain injury
website, by emails sent to Brain Injury Association members requesting referrals, and by
word of mouth. The open-ended interview questions regarded the parents' experiences in
terms of education and referral after TBI and yielded qualitative data rich in detail. The
majority of parents needed more information than they were given and information that
correlated with the child's stage of recovery. They expressed a need for a perspective or
"road map" to help them navigate the rehabilitative process, and a need to retain hope.
In phase two, the parent handbook was developed. Parents described difficulty
organizing the information they received and applying it to their child. The literature
indicated that the formation of useful cognitive structures with which to organize
information may be a problem for people who are under psychological stress.
Consequently, the handbook was designed to provide a cognitive structure in the form of
a visual aid, a "road map" of the rehabilitative process. Sections of the handbook
correlate with stages of rehabilitation to time information to the child's phase of recovery.
In the final phase, a plan was devised for disseminating the handbook by posting
the parent handbook on the BIAOR website in draft format in a manner that allows
providers, parents, and survivors to suggest corrections, revisions, and additions. The
parent handbook will be revised three times over a period of six months, after which it
will be posted as a peer and client reviewed product.
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