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

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.

Measures

The three measures used in this study were the Supervision Rating Scale (SRS) (Boake, 1966), Personal Independence Profile (PIP) (Nosek & Fuhrer, 1992), and the Health and Community Services/Head Injury (HCBS/HI) waiver screening, a screening instrument developed by social service personnel as a Medicaid waiver screening instrument for persons with head injury. The SRS is a brief scale designed to measure level of supervision of persons with head injury. It defines supervision as nursing care, physical assistance, verbal cues, and even the presence of another person on the same premises to ensure the person's safety. The person who provides the supervision can be a family member, paid attendant, facility staff member, friend, or any other person who takes responsibility for being with the person with head injury. The SRS is a thirteen-point ordinal scale in which the clinician makes a decision based on interviews with the patient and informant. The informant has observed the level of supervision received by the person with head injury. Scoring is a one-step procedure where the clinician assigns the rating that is closest to the person's level of supervision.

The PIP was designed to provide a heuristic model of independence derived from Frieden, Richardson, Cole, and Bailey (1979). It offers a definition of independent living for persons with severe disabilities as having control over one's life, having options, making decisions, performing daily activities, and participating in the life of the community. Hence, this model identifies four essential components of independence: 1) perceived control over one's life; 2) psychological self-reliance; 3) environmental resources; and 4) independence in physical functioning. The demand for each of these components -- basic survival, material well being, productivity, and self-actualization -- are generated by one's life situation and personal goals (Nosek & Fuhrer, 1992). The PIP was constructed to operationalize these four components of independence identified in this conceptual model: (a) perceived control over one's life; (b) psychological self-reliance; (c) physical functioning; and (d) environmental resources.

The final instrument used in this study is the HCBS/HI waiver screening. It was designed by social service personnel to determine eligibility for a waiver that provides funds for supervisory needs, such as staff. However, the items on this instrument were invented by the staff based on what they determined to be pertinent to the needs of persons with head injury. The instrument was never validated. Unlike similar state-based funds, the waiver allows the person to choose services he or she determines are appropriate for his or her condition. Hence, a person may choose to use the funds to support his or her spouse to provide supervision. Others may need the support of part-time or full-time staff persons to offer supervision.

Procedures

The SRS and the PIP were administered by using the following procedures. First, each participant was contacted by letter and invited to participate in the study. Letters were followed, within 14 days, by phone calls from the program administrator inquiring about their interest in the study. Those willing to participate were mailed consent forms and contacted by the primary investigator. A time was arranged for conducting interviews. For most participants, questioning was done during the investigator's initial phone call. In some cases, however, initial calls revealed some participants were not immediately available for interviewing (e.g. hospitalized or out of town) and a date was set for questioning. During questioning, the participant was read each of the items of the PIP and SRS, and was asked to respond with one of the available answers. Several weeks after interviews with the person with head injury, their spouse/case worker/psychologist was also administered the SRS. At this time, the HCBS/HI was also administered to these persons with first-hand knowledge of the person with head injury.

Validity and Reliability

To measure reliability, Cronbach's alpha was calculated according to long-standing procedures suggested by that author (Cronbach, 1951). Construct-related evidence of instruments was explored by a correlational procedure. With this procedure, validity is demonstrated when an instrument can be shown to correlate highly with a known measure of the behavior or concept that it purports to measure.

Results

The mean SRS score by case managers was 3.7. The mean SRS score by persons with head injuries was 4.5. For each of the four parts of the PIP, response frequencies were tabulated and correlations run with the SRS-Case Manager/Informant version (SRS-CM) and the SRS-Self-Report version (SRS-SF). Perceived control, as measured by the first part of the PIP, correlated with perceived need for supervision r = -.11 according to case manager/informants (SRS-CM) and r = -.05 according to clients (SRS-SF) suggesting virtually no correlation between perceived control and self-perceived need for supervision.

Correlation of the second part of the PIP with the SRS revealed correlations with the SRS-CM of r =.13 and with the SRS-SF r =.10, suggesting little relationship between statements of self-reliance and perceived need for supervision. The first part of the PIP correlated with the second part of the PIP r =.25 suggesting that perceived control and self-sufficiency are discrete and unrelated aspects of functioning. These areas are mobility, physical activity, dexterity, social roles, and activities of daily living. The third part of the PIP correlated with the SRS-CM r =.06 and with the SRS-SF r =.16. The third part of the PIP correlated with the first part of the PIP r =.34 and the second part of the PIP r =.16. Next, correlations of parts two and three of the HCBS/HI with the SRS-CM and SRS-SF were conducted. From these data, six items were identified which correlated r =.5 or above with the SRS-CM, suggesting some relationship between the behaviors measured by these items and global assessment of independence. These were items 59 from the second part of the PIP, items 62, 64, and 68 from the third part of the PIP, 2.7 from the second part of the HCBS/HI and 3.3 from the third part of the HCBS/HI. These items were then pooled to form the Brief Functional Independence Inventory (BFII). The Appendix displays the six items that constitute the BFII.

Reliability and Validity

The reliability of the SRS was .68. Cronbach's coefficient alpha was calculated for the first, second, and third parts of the PIP, second and third parts of the HCBS/HI, and for the BFII. As calculated for the first part of the PIP, the alpha was .78, and for the second part of the PIP was .80. The third part of the PIP was divided into five sections. Cronbach's coefficient alpha for these were: mobility, .56; physical activity, .79; dexterity, .82; social roles, .82; and activities of daily living, .75. Cronbach's alpha for the HCBS/HI part two was .76, for the third part of the HCBS/HI was .89, and for the BFII was .77.

High correlations were shown with part three of the PIP, the SRS-CM, SRS-SF, HCBS/HI, and BFII. The parts one and two of the PIP, on the other hand, showed the least degree of relationship with other tests, with weak correlations indicated between other parts of the PIP, as well as with the HCBS/HI, SRS-SF and SRS-CM, and BFII.

Discussion

Previous research has attempted to design instruments to determine independence of persons with disabilities. However, most are very complex, narrow in focus and lengthy, or designed to meet intake and closure requirements of programs offering services. Moreover, most of these instruments were validated with persons with mental retardation. The BFII, in contrast, is a brief, easy-to-use instrument. The BFII consists of the sum of its six item responses. When the reliability of the BFII was assessed, using Cronbach's alpha it was round highly internally consistent. Its validity, assessed by correlating it with a standard measure of independence and need for supervision, the case manager version of the SRS, also proved to be high. This high correlation with a known measure of independence and need for supervision, the SRS-CM r =.78, and it's high alpha.74 suggesting that is reliable and valid and, as such, a promising instrument in measuring independence and need for supervision of persons with head injury.

Implications for Vocational Counselors

Determining the amount of supervision required for persons with head injury can help the vocational counselor in a number of ways. For example, a client who only needs to be reminded to take his or her medicine may need little further supervision, especially if family members or case managers are assuring that medication is taken before or after work. Conversely, a person who is vulnerable to sexual exploitation because of bad judgment may require the presence of an attendant at the work site. Because of the BFII's brevity, the vocational counselor can quickly rule out such potentially dangerous hazards in a workplace for the person with head injury.

Because the BFII is looking at behavioral representations of independence, if it can better capture distinctions in the need for supervision. For example, if the item `Can you take your own medicine?' was the only one checked, the person who administers the instrument could note the exact need the person has (e.g., someone to assure the person takes medication at the fight time and in the right dosages). Similarly, the person administering the BFII would be prepared to assure around-the-clock supervision to a person vulnerable to victimization. Hence, the BFII is clear and operational. It typically does not ask informants to make subjective decisions concerning functioning but rather to assess specific tasks. Finally, the BFII is brief and simple, allowing it to be administered quickly and easily in a variety of settings. Its length is brief enough to avoid taxing even the most compromised participant.

Although the low-end of 50 nonrandomized participants represents a limitation to this study, the high correlations suggests promise for a much-needed brief assessment instrument to determine independence of persons with head injury. Therefore, the next step will be to validate this instrument. This future investigation will consist of a random sample of caregivers to control for errors such as time and motivation of persons for such an experiment.

References

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Boake, C. (1996). Supervision Rating Scale: A measure of functional outcomes from brain injury. Archives of Physical Medicine and Rehabilitation, 77, 765-772.

Cronbach, L.J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297-334.

Frieden, L., Richardson, L., Cole, J., & Baily, D. (1979). ILRU source book: A technical assistance manual on independent living. Houston: The Institute for Rehabilitation and Research.

Kreutzer, J.S., & Zasler, N.D. (1982). Psychosexual consequences of traumatic brain injury: methodology and preliminary findings. Brain Injury, 3, 177-186.

Lezak, M.D. (1983). Neuropsychological assessment. New York: Oxford University Press.

Malec. J.F., Smigielski, J.S., DePompolo, R.W., & Thompson, J.M. (1993). Outcome evaluation and prediction in a comprehensive-integrated post-acute outpatient brain injury rehabilitation programme. Brain Injury, 7, 15-29. Nosek, M.A., & Fuhrer, M. (1992). Independence among people with disabilities: I. A hueristic model. Rehabilitation Counseling Bulletin, 36(1), 6-20.

Ponsford, J. (1995a). Assessment and management of behavior problems associated with TBI. In J. Ponsford, S. Sloan, & P. Snow (Eds.) Traumatic brain injury: rehabilitation for everyday adaptive living (pp. 165-194). Hove: Lawrence Erlbaum Associates.

Ponsford, J. (1995b). Returning to the Community after TBI. In J. Ponsford, S. Sloan, & P. Snow (Eds.) Traumatic brain injury: rehabilitation for everyday adaptive living (pp. 195-229). Hove: Lawrence Erlbaum Associates.

Prigatano, G. P. (1991). Disturbances of self-awareness of deficit after traumatic brain injury. In G. P. Prigatano (Ed.) Neuropsychological rehabilitation after brain injury (pp. 143-151). Baltimore, MD: Johns Hopkins University Press.

Richardson, J.T.E. (1990). Clinical and neuropsychological aspects of closed head injury. Hove: Lawrence Erlbaum Associates.

Sadwin, R., Rothrock, R., Mandel, S., Sadwin, D., & O'Leary. (1993). Post-traumatic headache syndrome. In S. Mandel, R.T. Sataloff, & S.R. Schapiro (Eds.) Minor head trauma: Assessment, management, and rehabilitation. (pp. 142-158) New York: Springer-Verlag.

Schapiro, S.R., & Sacchetti, T.S. (1993) Neuropsychological sequelae of minor head trauma. In S. Mandel, R.T. Sataloff, & S.R. Schapiro (Eds.) Minor head trauma: Assessment, management, and rehabilitation. (pp. 86-106) New York: Springer-Verlag.

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Appendix

Part 1: Please think carefully about the statement as you answer. Circle one answer for each question.

1. Is the person with head injury able to defend him or herself against unwanted sexual advances or physical abuse?

Yes 0
No 5

2. Is the person with head injury able to perceive or judge other people's motives, especially the motives of those persons who might take sexual or financial advantage of the person?

Yes 0
No 5

Part 2: Please check the appropriate number to the question that best answers the statement to how the person with head injury is affected by his or her disability.

3. If the person with head injury had to take his or her own medicine, could he or she take the medicine? 1 -- Without help (in the right doses at the right time) 2 -- With some help (able to take medicine if someone prepares it for him or her or reminds him or her to take it.

4. If the person with head injury had a kitchen, could he or she prepare own meals? 1 -- Without help (plan his or her own meals). 2 -- With some help (can prepare some things but unable to cook full meals by self) 3 -- Completely unable to prepare any meals

5. If the person had necessary transportation, could he or she go shopping for groceries or clothes? 1 -- Without help (taking care of all shopping needs for self). 2 -- With some help (needs someone to go with him or her to help on all shopping trips). 3 -- Completely unable to do any shopping.

6. How much help does the person with head injury need in getting dressed? 1 -- No help at all. 2 -- Only needs help in tying shoes. 3 -- Needs help getting dressed.

Vincent K. Adkins Kennedy-Krieger Institute and The Johns Hopkins University School of Medicine

John Youngbauer North Los Angeles County Regional Center

R. Mark Mathews University of Kansas

Vincent K. Adkins, Kennedy Krieger Institute, 707 North Broadway, Baltimore, Md. 21205.