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aregivers’ Concerns about Judgment and Safety ofatients with Brain Injury: A Preliminary Investigation

effrey S. Kreutzer, PhD, Lee A. Livingston, PsyD, Rachel S. Everley, MS,elli W. Gary, PhD, MPH, OTR/L, Juan Carlos Arango-Lasprilla, PhD,

ictoria D. Powell, BA, Jennifer H. Marwitz, MA

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bjective: To identify caregivers’ most common concerns about the judgment and safetyf patients with brain injury in home and community environments. To quantify caregivers’tress levels and their level of comfort leaving patients at home unsupervised and examinehe interrelationships between caregivers’ safety and judgment ratings, stress levels, andevels of comfort leaving patients unattended.esign: Retrospective, cross-sectional design.etting: Outpatient brain injury neuropsychology clinic at a university medical center.articipants: A convenience sample of 121 caregivers of traumatic brain injury survivorst least 1 month postinjury and 18 years of age or older.ain Outcome Measurements: Scores in 9 domains from the Judgment and Safety

creening Inventory; ratings of stress levels and levels of comfort leaving patients at homenattended derived from the General Health and History Questionnaire.esults: Caregivers’ most common judgment and safety-related concerns were in theravel and Financial domains, with many reflecting patients’ memory deficits. Heightenedaregiver stress levels were prevalent. Higher levels of concern about judgment and safetyere associated with higher stress levels and concerns about leaving patients unattended.onclusions: Consistent with research on patients with other types of neurologicalisorders, concerns about driving and financial management among caregivers are preva-

ent. Additional research is needed to identify the most cost-effective methods of evaluatingatients and enabling them to function at their highest level in the community.

NTRODUCTION

ach year, acute care and rehabilitation hospitals in the United States serve more than50,000 people with traumatic brain injury (TBI) [1-3]. Rising health care costs haveramatically shortened lengths of stay [4,5]. The majority of patients with TBI are dis-harged home, yet many communities lack the professional resources necessary to providepecialized care [6]. With little knowledge or training, family members are often left to fendor themselves and provide for patients’ long-term care needs at home [7]. Researchndicates that caregivers are often concerned and experience stress arising from their lack ofnowledge, skills, and resources required to provide optimal care [7].

The physical, cognitive, and neurobehavioral consequences of TBI vary greatly.ften, there is a profound impact on patients’ ability to live safely and independently in

heir home community. Physical challenges that may occur as a result of TBI includempaired coordination, visual disorders, and ambulation difficulties [8-10]. Cognitiveroblems often include impairments of memory, reasoning, attention, and language11-14]. Personality and neurobehavioral problems often include impaired self-aware-ess, irritability, anger, and depression [15,16]. The presence of multiple impairments

n multiple domains increases the likelihood that patients will be involved in accidentsnd other unsafe situations [9,17].

Despite the potential for the sequelae of brain injury to cause stress and burden foraregivers, relatively little empirical research has been conducted investigating their con-

erns about patients’ judgment and safety. Researchers have noted that caregivers of patients

Sa

M&R © 2009 by the American Academy of Physical Me934-1482/09/$36.00

rinted in U.S.A. D

.S.K. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Box 980542, Richmond, VA 23298-542. Address correspondence to: J.S.K.;-mail: jskreutz@vcu.eduisclosure: nothing to disclose

.A.L. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

.S.E. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

.W.G. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

.C.A.-L. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

.D.P. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

.H.M. Department of Physical Medicine andehabilitation, Virginia Commonwealth Uni-ersity, Richmond, VAisclosure: nothing to disclose

isclosure Key can be found on the Table ofontents and at www.pmrjournal.org

upported by Grant #H133P040006 from theational Institute on Disability and Rehabilita-

ion Research (NIDRR), Office of Special Edu-ation and Rehabilitative Services (OSERS),epartment of Education, Washington, DC.

ubmitted for publication January 27, 2009;ccepted July 10.

dicine and RehabilitationVol. 1, 723-728, August 2009

OI: 10.1016/j.pmrj.2009.07.005723

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724 Kreutzer et al CAREGIVER CONCERNS IN PATIENTS WITH BRAIN INJURY

ith a variety of neurological disorders, including neurode-enerative disorders, stroke, and brain injury, have concernselating to judgment and safety. These may include patients’bility to travel, manage finances, manage medications, pre-are foods, use appliances and tools, handle emergencies,nd maintain home security [18-24]. Caregivers’ acutewareness of safety concerns adds substantially to their stressevels [25-27]. Respite is often unavailable and many caregiv-rs are unwilling to leave the patient at home even for shorteriods [22,28-30]. As caregivers devote more time towardhe supervision and care of their relatives, they have less timeor themselves and for other responsibilities [31-33]. Manyamily members are forced to quit their jobs, move to aart-time schedule, or take extended leaves of absence to careor their loved ones at home [34,35]. The lack of stablencome increases financial concerns and further contributeso caregivers’ high long-term stress levels.

Many tools are available to assess home safety and judg-ent concerns among different patient populations. Health

are professionals use measures including neuropsychologi-al testing, driving evaluation, and home safety assessment36-38]. Although formal evaluations can provide very usefulnformation, they have practical limitations. The ecologicalalidity of clinic-based evaluations and generalization toommunity and home environments is uncertain [39-41].europsychologists have consistently faced questions about

he extent to which standardized memory and reasoning testsonducted in the office truly reflect the quality of behavior ineal-world situations. On-road driving evaluations com-only lack reliability and standardization [42]. Home visits

re the gold standard of kitchen, appliance, and generalousehold safety evaluation [43]. However, they are time-onsuming, difficult to perform cost-effectively, and the costsre less likely to be reimbursed by American insurance com-anies [30,44,45].

In summary, caregivers of persons with TBI often haveuestions about patients’ judgment and safety. Yet little isnown about caregivers’ most prevalent concerns and their

mpact on caregivers’ stress levels. The present investigationas three major objectives: (1) identify and quantify theajor judgment and safety concerns held by caregivers of

ndividuals with TBI; (2) quantify caregivers’ stress levels andheir level of comfort leaving patients at home unsupervised;nd (3) examine interrelationships between caregivers’ judg-ent and safety ratings, stress levels, and levels of comfort

eaving patients unattended at home.

ETHODS

articipants

he sample consisted of 121 caregivers of patients with TBIeferred by physicians or other rehabilitation professionals foreuropsychological evaluation at a university medical centeretween January 2002 and September 2008. The Institutional

eview Board reviewed and approved this study. a

atient Characteristics. Medical records provided de-ographic and injury-related information for the survivor.ost of the patients were men (77.7%) and white (73.5%).hey ranged in age from 18 to 79 years old (mean: 35.6; SD

14.7), most were unmarried (69.2%), high school orollege graduates (81.9%), and unemployed and not lookingor work (58.3%).

Information on hospitalization was available for 107 indi-iduals. Of those, 22.4% were hospitalized for less than 8ays, 13.1% between 8 and 14 days, 47.7% between 15 and0 days, and 15% for more than 60 days. Two percent wereot hospitalized. Of those with Glasgow Coma Scale scoresvailable (n � 77), 27.3% had an admission Glasgow Comacale of 13-15, 15.6% had a score of 9-12, and 57.2% had acore of 3-8. Time postinjury ranged from 1 month to 33ears (mean: 26.1 months; SD � 60.1).

aregiver Characteristics. The majority of caregiversere women (86.8%), with a mean age of 47.5 years (range:0-80; SD � 12.1). In general, the caregivers were familyembers of the patient (spouses or partners, 37.2%; parents,

1.2%; children, 5.8%; siblings, 3.3%). The remaining infor-ants were either friends (0.8%) or others (1.7%). Most

85.8%) caregivers indicated that they resided with the pa-ient. When asked to indicate how many hours per day werepent caring for the patient, the majority of caregivers54.3%) indicated spending less than 5 hours per day,hereas 31.8% spent 9 or more hours per day, and 13.8%

pent between 5 and 8 hours per day.

nstruments

he caregivers completed the 2 self-report instruments de-cribed in the following sections. The General Health andistory Questionnaire measured patient and caregiver socio-emographic information, comfort leaving patients unat-ended, and caregiver stress levels. The Judgment and Safetycreening Inventory (JASSI) was developed to measure care-iver judgment and safety concerns.

eneral Health and History Questionnaire (GHHQ).he GHHQ [46] is completed by caregivers to elicit detailed

nformation about demographic, psychosocial, residential,nd vocational information about the patient and his or herrimary caregiver. The instrument has been used effectively

n several outcome studies [47-49]. The GHHQ also elicitsnformation about caregivers’ general stress level and level ofomfort leaving the patient at home alone. As described inrevious research [50], a 7-item, Likert-type rating scale wassed to measure stress (0 � no stress to 6 � severe stress)aregivers experienced from changes in the patient since thenjury and a 5-item Likert-type rating scale was used tondicate comfort leaving the patient at home unsupervised1 � very uncomfortable to 5 � very comfortable).

ASSI. The JASSI was developed to quantify caregiver’s con-erns about patients’ judgment, safety, and behavior in home

nd community environments. Developed to address com-

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725PM&R Vol. 1, Iss. 8, 2009

on brain injury problems, the JASSI was modeled afternstruments developed for caregivers of patients with othereurological disorders [24]. First, common concerns were

dentified via a thorough review of the literature and in-depthnterviews of caregivers. A total of 55 distinct concerns wererouped by 4 experienced clinicians (occupational therapy,ocial work, rehabilitation psychology, and neuropsychol-gy) into 9 domains (Table 1). A scale of these 55 items wasreated such that responding would require a sixth-gradeeading level and take approximately 15 minutes to com-lete. The caregiver conveys level of concern about poten-ially dangerous behaviors using a 4-point scale with 0 indi-ating none, 1 indicating little, 2 indicating much, and 3ndicating very. A subset of 15 critical items, or behaviors,hat could readily endanger patients’ health or safety wasreated by the clinicians and is listed in Table 2.

rocedure

he GHHQ was mailed in advance to caregivers who wereelf-identified based on an initial phone contact. A caregiver wasefined as the person who provides the most assistance to theatient. Caregivers were asked to accompany the patient andring the completed GHHQ to the scheduled neuropsycho-

ogical examination.In advance of scheduling patients’ appointments, referral

ources were asked to complete a checklist indicatinghether they had concerns about the patient in each of the

ollowing areas: medication management, financial manage-ent, poor judgment of safety, driving, parenting, or com-etence. During intake, caregivers were also asked to identifyoncerns in the same areas. Upon arrival for the examination,aregivers were asked to complete the JASSI if they or theeferral source had raised concerns. Responses to the JASSInd the GHHQ were reviewed by staff for accuracy andompleteness. Corrections were made and missing data ob-ained as needed. All data were collected through retrospec-ive chart review.

ESULTS

o identify judgment and safety domains of greatest and

able 1. Judgment and Safety Screening Inventory domains:

Domains

ravel Skills required to drive and trainancial Ability to manage financial tr

maintain financial recordsnterpersonal Ability to interact safely with o

interpersonal situationsood and Kitchen Ability to properly prepare, coppliances and Tools Ability to use tools and appliaousehold Ability to safely clean, protecedications and Alcohol Ability to take medications as

ire Safety Ability to use flammable objeirearms Ability to safely store, secure,

east concern to caregivers, the average percentage of items

n each domain rated as being “much” or “very much”oncern was calculated. Analysis indicated caregivers’reatest concerns related to Travel (31.9%), Financial31.1%), and Medications and Alcohol (20.3%). The re-aining values ranged from 5.4% to 18.1%, with Firearms

east often identified as a great concern. Mean ratings fortems in each of the 9 domains were also calculated andanged from 0.20 to 1.08. Consistent with the propor-ional data, means for Travel (M � 1.08; SD � 0.80) andinancial (M � 1.05; SD � 0.89) domains were highest.owest were means for Firearms (M � 0.20; SD � 0.61)nd Food and Kitchen (M � 0.49; SD � 0.68) domains.

To identify behaviors of greatest concern, the percentagef caregivers ascribing “much” or “very much” concern toach of the JASSI items was calculated. Table 3 lists the itemsf great concern to more than 25% of caregivers in theample. Three of the 19 behaviors identified were among theritical items. As suggested by the mean scores, Travel andinancial concerns dominated the list, composing 16 of the

iption and characteristics

s of ConcernNumberof Items

fely as a pedestrian 13tions, secure money and credit cards, and 8

and avoid potentially dangerous 5

e, and safely cook foods 4afely 4maintain the household 4ribed and properly limit alcohol consumption 6ely and prevent fire 7se firearms 4

able 2. Judgment and Safety Screening Inventory criticaltems and percentage of caregivers assigning ratings of muchr very much concern

Domain Items %

ravel Ignoring traffic signs, warnings, orsignals

31.9

Not yielding the right of way 31.1Crossing road without looking 20.5

edication Driving or operating machinery afterdrinking or taking medication

16.6

Taking more medication thanprescribed

16.2

Drinking alcohol while on medication 13.7ire Safety Forgetting to shut off stove burners,

heater, iron, and other appliances25.6

Leaving cooking food unattended 21.5Careless with flammable items 14.2Careless with matches or candles 12.6Dropping cigarettes or leave themburning

12.2

Failing to put out cigarettes 8.9Smoking near or around flammablematerials

4.4

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9 items. In the Travel domain, nearly half of caregiversoiced great concern about slowed reaction time, distractibil-ty, having accidents, and driving while fatigued. Great con-erns in the remaining domains (Financial, Medication, Ap-liances, and Fire Safety) reflected memory problems, suchs patients misplacing their checkbook, wallet, and creditards, forgetting to pay bills and record checks, forgetting toake medications, and forgetting to shut off stove burners andther appliances.

The second objective of this study was to quantify care-ivers’ stress levels and their levels of comfort leaving patientst home unsupervised. Very high stress ratings were preva-ent. For the sample, the mean stress level was 4.28 (SD �.58). In fact, nearly one third of caregivers (29.9%) reportedstress level of 6, the highest possible rating, and 20.5%

eported a level of 5.Caregivers’ ratings of their comfort levels leaving the pa-

ient at home unsupervised were examined as well. Nearly auarter reported feeling either uncomfortable (6%) or veryncomfortable (16%) leaving the patient unsupervised. Justnder a quarter (24%) felt a little uncomfortable. Otherwise,1% felt comfortable and 32% indicated that they were veryomfortable leaving the patient unsupervised. The meanomfort level for participants was 3.47 (SD � 1.41).

Interrelationships between caregivers’ JASSI domain ratings,tress levels, and levels of comfort leaving survivors unattendedere examined via Pearson correlations (Table 4). Travel, Finan-

ial, Interpersonal, Appliances, Household, and Medicationsnd Alcohol domains were significantly associated with caregiv-rs’ stress levels and their comfort levels leaving patients alone atome. Fire Safety correlated with comfort levels leaving patients

able 3. Items most often rated as being of much or veryuch concern

Domain Items %

ravel Reacting slowly in problem situations 49.6Being easily distracted 49.6Having accidents 44.0Driving when tired or not alert 41.1Taking eyes off the road 33.9Trouble finding parked vehicle 32.2Ignoring traffic signs, warnings orsignals*

31.9

Not yielding the right of way* 31.1inancial Forgetting to pay bills 43.6

Failing to record checks in checkbook 40.0Misplacing checkbook 29.6Easily talked into giving away money 28.6Losing money 27.7Misplacing wallet 26.9Giving others personal financialinformation

26.8

Misplacing credit cards 25.5edication Not taking medication on schedule 39.4ppliances Climbing unstable objects 29.4ire Safety Forgetting to shut off stove burners,

heater, iron, or other appliances*25.6

Critical items.

lone, but not with stress levels. No significant relationship was

ound in the domains of Food and Kitchen or Firearms. In mostomains, greater concern for judgment and safety was related toigher levels of stress and lower comfort levels leaving theatient unsupervised. Correlations between concern for judg-ent/safety and stress were highest for the Travel and Financialomains, whereas correlations between comfort leaving theatient alone and concerns for judgment and safety were highestor the Household, Medications and Alcohol, and Financialomains.

ISCUSSION

espite their lack of experience and training, family caregiv-rs often have a critical role in monitoring and maintainingatients’ health and safety in home and community environ-ents. Because of impaired self-awareness, patients with

rain injury often misperceive their limitations and capabil-ties. Consequently, physicians and other health care profes-ionals must rely heavily on caregivers’ reports when makingecisions about the need for activity restrictions, rehabilita-ion services, greater supervision, and further evaluation. Theresent investigation is the first in a planned series intendedo evaluate and establish the validity of the JASSI. Caregivers’erceptions of patients’ judgment and safety in home andommunity environments were examined.

Research has consistently identified driving as an area ofoncern by caregivers of patients with neurological disorders.or example, Wild and Cotrell [51] found that caregivers ofatients with Alzheimer disease were more likely to identifyriving as an area of concern compared with informants forealthy elderly people. In a study by O’Neill et al, 65% ofaregivers of patients with dementia symptoms described aignificant decline in driving ability [52]. Focused on patientsith TBI, the present investigation also identified driving as aajor area of concern. Among the 9 judgment and safetyomains examined, concerns about driving were most prev-lent. Specifically, more than one third of caregivers reportedoncerns about patients reacting slowly in problem situa-ions, being easily distracted, driving when tired or not alert,aking their eyes off the road, or having accidents. Thealidity of caregivers’ concerns about driving is substantiated

able 4. Correlations between Judgment and Safety Screen-ng Inventory mean concern ratings, stress ratings, and level ofomfort leaving the patient at home

Domains Stress Level Comfort Level

ravel .33* �.24†inancial .42* �.27*nterpersonal .25* �.20†ood and Kitchen .15 �.19ppliances and Tools .24† �.26*ousehold .22† �.39*edications and Alcohol .27* �.29*

ire Safety .17 �.25†irearms �.01 �.02

Significant at P � .01 level (2-tailed).

†Significant at P � .05 level (2-tailed).

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727PM&R Vol. 1, Iss. 8, 2009

y recent studies on driving records and road accidents afterBI [19,21].

Research has also identified financial management as aajor concern for caregivers of patients with neurologicalisorders. For example, Wadley et al found that caregivers ofatients with Alzheimer disease endorsed deficits in financialanagement at a higher rate than informants of controls

53]. The present investigation yielded similar findings. Aubstantial number of caregivers conveyed significant con-ern regarding patients’ financial management skills. Nearlyalf expressed concerns about patients forgetting to pay bills,nd a similar percentage expressed concern about failing toecord checks in a checkbook.

The present investigation identified caregivers’ concerns inther areas. For almost 40% of the sample, not taking medica-ions on schedule was of “much” or “very much” concern.

edication administration compliance issues have also beenocumented as a source of frustration for caregivers of depen-ent elderly persons [54]. With regard to home safety, a quarterf the sample expressed concern regarding patients forgetting tohut off stove burners, heaters, irons, or other appliances. Sim-lar concerns have been reported in the dementia literature [24].

orthy of consideration is that many of the worries expressedy caregivers in the present investigation reflected memoryeficits (eg, misplacing wallet or credit cards, leaving cookingood unattended, forgetting to lock doors and windows),hich are characteristic of TBI [12].The literature says little about caregivers’ distress and their

oncerns about patients’ judgment and safety. The presentnvestigation examined caregivers’ stress and level of comforteaving patients at home unattended. As expected, greaterevels of concern in nearly every domain were associated withreater levels of stress and discomfort leaving the patientnattended. Interestingly, some areas of concern were moreighly associated with discomfort leaving the patient alone,ven if they were not among the most commonly identified.or example, concerns relating to abilities to safely clean,rotect, and maintain the household were not reported by aajority of caregivers. However, these concerns were most

losely associated with discomfort leaving patients unat-ended at home. Studies have shown that high levels of stressn caregivers of patients with TBI are associated with lowerevels of patient functioning, specifically problematic behav-ors and attitudes [50,55].

The limitations of the present investigation require acknowl-dgment and provide clear direction for future research. Theample used for this study was drawn from a single center. Aulticenter investigation would likely provide more represen-

ative data. The study employed a convenience sample; that is,atients with more severe injuries who were referred for evalu-tion because of concerns about their functioning. Studies com-aring patients with minor and severe injuries and measure-ent of functional status would help establish the prognostic

alue of injury severity and functional characteristics. Data werebtained from a single informant at a single point. Longitudinal

tudies are needed to identify the true course of difficulties, and

tilization of multiple informants can help established the reli-bility of caregiver ratings.

Future studies involving the JASSI and widely acceptederformance measures are warranted. Correlations with stan-ardized measures, including neuropsychological tests,ould help validate concerns expressed by caregivers,

hough uncertainties remain about the ecological validity oflinic-based testing. Comparisons to qualitative measuresncluding in-home assessments and driving evaluationsould be useful as well. Future studies comparing patients’

nd caregivers’ reports could help elucidate factors influenc-ng self-awareness in ratings bias. The sample consisted onlyf patients with TBI. Investigation involving patients withther types of neurological conditions could help determinef the JASSI has wider relevance. For example, dementia isften progressive, whereas brain injury is often followed by aeriod of recovery. Direct comparisons between patient pop-lations using the JASSI could be helpful in distinguishingheir similarities and unique characteristics.

ONCLUSION

he present investigation indicated that driving and financialanagement are key areas of concern for caregivers of out-atients with TBI. Overall, many of caregivers’ concerns wereelated to inadequate memory functioning. Investigation alsondicated that substantial numbers of caregivers were highlytressed. Furthermore, caregiver stress and levels of discom-ort leaving patients at home unattended were correlatedith their degree of concern for patients’ judgment and

afety. These findings are consistent with research focused onatients with other neurological disorders including demen-ia. The pattern of findings also suggests that the JASSI is aseful tool for identifying caregivers’ concerns about patients’

udgment and safety.

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