A Validation of a Brief Instrument to Measure Independence of Persons with Head Injury

Journal of Rehabilitation, July-Sept, 2000 by Vincent K. Adkins, John Youngbauer, R. Mark Mathews

Half a million persons experience serious head injury each year in America (Swiercinsky, Price, & Leaf, 1993). Because of remarkable advances in emergency care, most of these persons now survive. Closed head injury results from the skull being slammed against a surface, such as a windshield, steering wheel, ground, or some other stationary object. The compression, twisting, and distortion of the brain inside the skull ensuing from such impact causes localized as well as widespread damage throughout the brain. Open head injuries result from an external object entering the skull, such as a bullet. Brain damage may also result from a lack of oxygen to the brain, near drowning, heart attacks, lung problems, chemical and drug reactions, and infections.

Although the causation of trauma and the severity of injuries sustained by persons with a head injury are varied, one effect is universal -- some brain cells will never be reconnected in the same way (Swiercinsky, et al., 1993). These lesions cause lingering memory and learning difficulties. Throughout the process of adjustment and coping, persons with head injuries and their families are faced with a plethora of changes.

One problem that is nearly universal among persons with head injury is memory function (Richardson, 1997: Sadwin, Rothrock, Mandel, Sadwin, & O'Leary, 1993; Sloan & Ponsford, 1995; Swiercinsky, et al., 1993). There is often an inability to recall past events and information, both about one's own life, and general knowledge and skills (Baddeley, 1986; Lezak, 1983; Stuss & Bensen, 1986). This also affects the ability to recall new information (Shapiro & Sacchetti, 1993). There may be self-centeredness, characterized by demanding, attention seeking-behavior, including jealousy, and failure to see others' points of view (Swiercinsky, et al., 1993). By the nature of their disability and/or other restriction to treatment centers, some persons are necessarily sexually frustrated (Kreuter & Zasler, 1982). Because of reduced behavioral control, this frustration may be expressed inappropriately. There may be verbal outbursts; the person with head injury may inappropriately blame other persons (Prigatano, 1991). Sometimes this behavior may escalate into violence, such as hitting, kicking, pulling hair, or throwing objects (Ponsford, 1995a).

Of all these challenges in the rehabilitation process after head injury, none is more critical than the return to the community where the person attempts to construct a new life (Ponsford, 1995b). At this time, a myriad of problems and issues becomes salient and need for rehabilitation becomes pertinent. It is often at this time that the person who has suffered traumatic head injury, their family, and the therapy staff can truly assess and approach the limitations and lifestyle changes that will confront the person (see Malec, Smigielski, DePompolo, & Thompson, 1993). Because the effects of head injury vary greatly from person to person, it is equally important to determine a detailed analysis of the tasks that the person can and cannot perform.

Although a great deal of energy is often devoted to the development of independence in a range of skills during the inpatient and outpatient hospital-based rehabilitation phase, it is frequently not until the person who has suffered a head injury returns to the community that the specific needs for supervision become apparent (Ponsford, 1995b). For example, a person who is able to function adequately except for bathing will need less supervision than a person who is also unable to remember to take his or her medicine on a daily basis, prepare meals, or use the toilet without assistance.

The purpose of this study was to develop a brief, easy-to-use instrument to measure independence of persons with head injury, based upon three existing instruments: the Supervision Rating Scale (SRS); the Personal Independence Profile (PIP); and the Home and Community Based Services/Head Injury (HCBS/HI) waiver screening. Although the SRS is a brief, easy-to-use single-response instrument, experience suggests that it is not always possible to adequately summarize a person's need for supervision by choosing a single item from a series of pre-defined independence levels. For example, one informant reported that a participant could be left alone for part of the day (Level 3) while failing to note that the environment (a fenced-in apartment complex populated by watchful neighbors) allowed such departures. Hence, the need for a short instrument with multiple points was needed. The ensuing six-part instrument is the Brief Functional Independence Inventory (BFII), an instrument designed to replace the HCSB/HI as a screening instrument to determine eligibility for a waiver for persons with head injury in Kansas.

Method

Participants

Participants were 50 community-residing persons who had been diagnosed with head injury, and 50 participants who were spouses, case workers, or a clinical psychologist who could speak about the supervisory needs of the person with head injury. Of the 50 participants who had been diagnosed with head injury, 11 (22%) were female and 39 (78%) were male. The sample included two African Americans (both males) and 48 Caucasian American participants. Participants ranged in age from 18 to 65 (Mean = 38.6) and had experienced a head injury from birth to 10.1 years prior to their involvement in this study. The participants lived in eastern Kansas, western Missouri, and Indiana. Participants were recruited for the study by a human service agency serving people with head injuries living in and around Kansas City (Community Works, Inc.), at a head injury conference conducted at Topeka, Kansas, and by a clinical psychologist who had evaluated these participants for disability determination in Indiana.