Development Of An Information Source For Parents Of Children With Traumatic Brain Injury

Abstract

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.