Predictors of family functioning and change 3 years after traumatic brain injury in children

754

Predictors Traumatic

of Family Functioning and Change 3 Years After Brain Injury in Children

J’May B. Rivara, ACSW, Kenneth M. Jaffe, MD, Nayak L. Polissar, PhD, Gayle C. Fay, PhD, Shiquan Liao, PhD, Kathleen M. Martin, MN, RN ABSTRACT. Rivara JB, Jaffe KM, Polissar NL, Fay GC, Liao S, Martin KM. Predictors of family functioning and change 3 years after traumatic brain injury in children. Arch Phys Med Rehabil 1996;77:754-64. Objectives: To examine changes in family functioning from injury to 3 years after pediatric traumatic brain injury; to determine factors most predictive of family outcomes at 3 years and variables that promote positive outcomes and changes over time. Design: Prospective cohort study Setting: Two regional tertiary care centers; cases followed for 3 years into community. Participants: Families of 81 children, ages 6 to 15 years, who sustained closed head injury and loss of consciousness (mild = 43, moderate = 20, severe = 18), consecutively enrolled over 15 months. Main Outcome Measures: Family Environment Scale, Family AssessmentDevice, Family Inventory of Life Events, Health Insurance Survey-General Well-Being, NYU Problem Checklist for Significant Others, Family Interview Rating Scale, Family Global Assessment Scale. All were obtained initially and at 3 months, 1 year, and 3 years postinjury. Predictor variables were selected from the instuments above, as well as from the parent and teacher versions of the Child Behavior Checklist, socioeconomic status, and injury severity. Results: Preinjuxy functioning was the best predictor of 3year outcomes. Fewer changes in family functioning were reported over 3 years in the mild or moderate groups, whereas more deterioration occurred in the severe group. At 3 years, one third to one half of parents in either the moderate or severe groups reported medium to high strain in 19 of 34 problem areas. Low levels of family control and high levels of expressivenesscorrelated with better outcomes for severe group. Positive change for the severe group was marked by better preinjury levels of communication, expressiveness,problem solving, use of resources, role flexibility, greater activity orientation, and less conflict, control, and stress.Preinjury variables and severity explained from 26% to 69% of the variation in 3-year outcomes. Conclusions: Families at risk for poorer outcomes can be From the Department of Rehabilitation Medicine (Ms. Rivara, Dr. Jaffe, Dr. Fay, Dr. Liao), the Department of Pediatrics (Dr. Jaffe), the Department of Neurological Surgery (Dr. Jaffe), and the Division of Neurology (Ms. Martin), Children’s Hospital and Medical Center; the School of Social Work (Ms. Rivara), Departments of Rehabilitation Medicine, Pediatrics, Neurological Surgery (Dr. Jaffe), Department of Biostatistics (Dr. Polissar), and Department of Rehabilitation Medicine (Dr. Fay), University of Washington; The Statistics and Epidemiology Research Corporation (Dr. Polissar); and Northwest Hospital (Dr. Liao), Seattle, WA. Submitted for publication June 1, 199.5. Accepted in revised form January 19, 1996. Supported by Centers for Disease Control grant R49KCR002299. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. Reprint requests to J’May B. Rivara, ACSW, Department of Rehabilitation Medicine CH-71, Children’s Hospital and Medical Center, 4800 Sand Point Way NE, PO Box C-537 1, Seattle, WA 98 105. 0 1996 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation 0003-9993/96/7708-3539$3.00/O

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prospectively identified and should be supported and encouraged in their efforts to develop new coping resources. 0 1996 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation S A LEADING SOURCE of morbidity in children, trauA matic brain injury (TBI) often causespersistent cognitive, language, behavioral, and academic problems.‘.” Not only can TBI threaten the child’s chances of successin school and in the community, but many families struggle in its aftermath.4,5 We previously reported that families of severely injured children experienced increased strain and deterioration in relationships, coping resources and global levels of family functioning in the first year following injury.6 This was in contrast to families of children with mild and moderate injuries, who experienced little change and deterioration in family functioning in the same time period. Preinjury family functioning, in fact, was a stronger predictor of family outcomes at 1 year than was injury severity. Cohesion, stronger relationships, and better coping resources predicted more positive l-year family outcomes6 Child outcomes are also influenced by family functioning, and our reports have shown that preinjury family variables were important predictors of the injured child’s social competence and behavioral outcomes at 1 year.7,8Other than these series of reports, there are no formal studies that have focused on the short- or longterm impact on the family after childhood TBI. There are more frequent and methodologically sound reports of family response to adult TBI. Most have described substantial impact and strain on families of severely injured adults as early as 3, 6, and 12 months after injury,‘.“’ and lasting as long as 5,” 7,” 10,‘” and 1514years. Oddy and Humphrey,” however, found in their study that the initial high levels of family depression after injury diminished over the first year with mildly and moderately injured children. More recent investigations by Kreutzer and associates16and Hall and colleagues17found that parents experience less burden, lower levels of depression, and healthier family functioning scoresthan spousesafter adult TBI. These findings may be relevant when comparing child and adult outcomes. Parents as a group may be more resilient and tolerant of the cognitive and behavioral changes they observe following injury than spouses. HallI also found that levels of caregiver complaints, 2 years after TBI, were higher in those with an atrisk psychosocial history. Good preinjury functioning, in the final analysis, may be the best predictor of positive family adjustment in both children and adults. Consistent with our lyear results, Livingston and coworkers’8 reported that the best predictor of family distress at 1 year was the caregiver premorbid psychiatric and general health. Reports in the field of childhood chronic illness are helpful in identifying critical issues and in interpreting the findings of our earlier studies. Greater severity of illness and disease has been linked with increased stress,” marital disruption,20 and maladaptive family functioning.*’ Recently, however, more studies in childhood chronic illness have focused on competence and sources of support characteristic of resilient families22~25

PEDIATRIC

TRAUMATIC

and have explored such moderators of successful adaptation as expressiveness,26 flexibility,27 social supp~rt,~~ family cohesion,29 and a positive attitude.” Identifying family strengths that appear to increase positive functioning may be the key to supporting and building family coping resources, thereby improving the chances of optimal family and child functioning over time. This study was undertaken to examine changes in family functioning from preinjury to 3 years after pediatric TBI and to determine those factors that best predict 3-year family outcome. We also wanted to identify family variables that promote positive outcome and change over time. Our study hypotheses were as follows: with increasing severity of injury, global family functioning continues to deteriorate after the first year of injury; more severe injuries produce higher levels of stress, poorer family relationships, and diminished coping resources; and high levels of family cohesion and expressiveness, good family relationships, and good coping resources predict more positive outcomes at 3 years and less deterioration over time for families of children at all levels of severity. METHOD Subjects The current study is part of our larger prospective cohort study examining outcomes of children with TBI.‘,‘,” The study population and procedures used in this study have been described previously.6-8 Subjects in the larger study were children 6 to 15 years of age living in western Washington who sustained closed head injury with a documented loss of consciousness. Subjects were consecutively enrolled on presentation to the emergency departments (EDs) of 2 regional medical centers over a 15-month period. They were excluded if they had a preinjury IQ of 75 or less, if their injuries were suspected to be from physical abuse, if they had prior head injury with loss of consciousness, if they had a preexisting major motor impairment, if they had been previously hospitalized for a major psychiatric disturbance, or if their parents were non-Englishspeaking. Of the 103 families initially enrolled in the larger cohort study, 94 were included in our l-year family functioning reports6-’ Of these 94 families, 81 were available for inclusion at 3 years for the current analyses. Among the 13 families not included, 2 moved out of state, 5 dropped out and 6 could not be located for the follow-up interview. These families had lower socioeconomic status and poorer family functioning profiles than those remaining in the study and a slightly but not significantly worse injury severity level. The primary caretaker in the family was consistently interviewed at all intervals and completed the family measures. Classroom teachers completed an assessment of child behavior. The primary caretaker was the mother or stepmother in 76 cases, father or stepfather in 3 cases, and grandmother in 2 cases. Table 1 presents a demographic description of the children and their families and a breakdown of the injury etiology. Measures Methods used to measure child and family functioning are summarized in table 2. Standardized self-report measures and interviewer ratings were completed at 4 intervals by the primary caretaker: within 3 weeks of injury (focusing on preinjury functioning), and again at 3 months, 1 year, and 3 years postinjury. Variables based on these preinjury assessments are used as predictors in our analyses and variables based on postinjury assessments are used as outcomes. Assessment of child functioning. TBI severity and preinjury functioning were rated.

BRAIN

INJURY.

755

Rivara

Table

1: Demographic Characteristics and Injury Etiology, Percentage (N = 81)

Sex of child Male Female Age of child <12yr z12yr Race Caucasian Of Color Injury etiology Motor vehicle related Falls Sports and recreational Assaults Other Hollingshead Four Factor Index of Socioeconomic Major business and professionals Medium business, minor professionals, technical Skilled craftsman, clerical, sales workers Machine operators, semiskilled craftsman Unskilled, unemployed Marital status of parents Married (living together) Unmarried (living together) Divorced Separated Single Family income ($) <15,000 15,000-24,000 25,000-34,000 35,000-54,000 >55,000 Parent’s education
73 27 68 32 84 16 44 32 14 5 5 Status 24 41 27 6 3 83 3 11 3 1 7 15 32 33 14

Mother

Father

4 26 44 16 10

11 22 32 19 15

Severity of TBI. Severity of TBI was rated using the Glasgow Coma Scale (GCS)“2 score assigned on presentation to the ED. As in our previous studies,‘,2@ three severity groups were defined based on the GCS score: mild (n = 43, initial GCS score of 13 to 15); moderate (n = 20, initial score of 9 to 12 or, for 2 cases, an initial GCS score of 13 or 14 and a score of 15 not achieved until 3 days); and severe (n = 19, an initial GCS of 3 to 8). Preinjury ratings of child functioning. Measures and dimensions of child functioning are shown in table 2 and have been reviewed in our previous reports.h~8 Teachers completed the Teacher Report Form of the Child Behavior Checklist (TRFCBCL),” and parents their version of the Child Behavior Checklist (CBCL).‘4 Four semistructured parent interviews, consisting of an extensive initial home assessment (measuring preinjury family functioning), a 3-month postinjury telephone follow-up, and a l- and 3-year office family interview, were conducted by a single interviewer (IBR). The Family Interview Rating Scale (FIRS), was completed after each interview and included ratings on both child and family functioning. A detailed description of the FIRS measure, its development, and the means by which interrater reliability and construct validity were established have been reported previously.6-8 Assessment of family functioning. Family functioning was assessed using both the standardized and the interviewer ratings listed in table 2. The validity, reliability, and norms of the standardized measures have been previously established by numerous studies as described in our earlier reports.h-8 Family

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PEDIATRIC

TRAUMATIC

Table

2: Measures

BRAIN

INJURY,

Used

in Study

Rivara

Subscales Family Functioning Family Global Assessment (FGAS)*

Family Interview (FIRS)*

Rating

Scale

Scale

Family

Environment

Scale

Family

Assessment

Device

Family Inventory (FILE)

and Dimensions

Global Score range, I-100: superior functioning, 91-100; good functioning in most areas, 81-90; only slight impairment of functioning, 71-80; some difficulties, 61-70; variable and inconsistent functioning, 51-60; moderate interference in most areas, 41-50; major impairment in several areas, 31-40; inability to function in most areas, 21-30; grossly impaired, 11-20; inability to function, l-10. Relationships: global, child/mother, child/father, child/siblings, child/peers, marital. Stress: global, intrafamily, transitions, loss, transitions, employment. Coping: global, psychological well-being, problem solving, social support, ability to use resources.

(ES)

Relationship dimensions: cohesion, expressiveness, conflict. Personal growth achievement orientation, intellectual-cultural orientation, active recreational emphasis. System Maintenance dimensions: organization, control.

(FAD)

General functioning (overall health and pathology and based on items from following subscales), problem solving, communication, roles, affective responsiveness, affective involvement, behavior control.

of Life Events

Areas of stress: total raw score-sum business, work-family transitions,

dimensions: orientation,

of following subscales: intrafamily, marital, pregnancy, illness and family care, losses, transitions “in and out”,

finance legal.

and

Health Insurance Survey-General Well-Being (HIS-GWB)

General well-being: sum general health. Mental

NYU Problem Significant

Strain related to 34 problems seen following TBI in areas of physical, language, cognitive and behavioral areas. Degree of strain rated on 7 point likert scale; 3-7 grouped to indicate moderate to severe strain.

Checklist for Others (NYU-SO)

Hollingshead Four of Socioeconomic

Factor Index Status

Child Functioning Child Behavior Checklist-teacher version (TRF-CBCL)

of following subscales: anxiety, depression, health index: sum of anxiety, depression,

independence, moral-religious

Index score ranges from O-66 and is based on education, occupation, sex and marital status. Major business and professionals (55-66): medium business, minor professionals, technical (40-54); skilled craftsman, clerical, sales (30-39); machine operators, semiskilled craftsman (20-29); Unskilled, unemployed (O-19). subscales

used:

adaptive

Child Behavior Checklist-parent version (CBCL)

Following subscales problems.

used:

social

Family Interview (FIRS)”

Child functioning:

* Measure

based

Rating on family

Following

Scale interview;

all others

based

global,

physical,

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functioning, competence, affective,

academic activities, behavioral,

performance, socialization, academic,

behavior school

problems.

of performance,

behavior

and social.

on self-report.

measuresincluded the Family Environment Scale @ES),” Family Inventory of Life Events and Changes (FILE),“6 and 2 additional standard measures not described in our earlier reports. The Family Assessment Device (FAD)“7 is based on the McMaster Model of Family Functioning and has 7 scaleswith a total of 53 items in a self-administered questionnaire. The FAD General Functioning scale assessesthe overall health and pathology of the family. We began using FAD at the 3-year assessment.In some analysesof predictors of 3-year outcomes, we used FAD at 3 years as a proxy for the unmeasured preinjury FAD scores. This proxy use is supported by the generally high correlations between preinjury and 3-year family measures. The use of FAD in this manner is discussedfurther in the section on Limitations. The Health Insurance Study-General Well-Being (HIS-GWB)“’ Scale is a mental health measure developed by the Rand Corporation and includes 6 subscalesand 2 summary scales. Two of the subscales (anxiety, depression) and the 2 summary scales (general well-being and the mental health index) have been included in the current study. The validity, reliability and norms of the HIS-GWB measures have been previously established”’ and a list of the subscalescan be found in table 2. In addition to the standardized measures of family outcomes, other measures included FIRS interviewer family ratings,6‘8the Family Global Assessment Scale (FGAS),6-8%19 and the New York University Problem Checklist for Significant Other (NYUSO),@all previously described.6**The family’s socioeconomic status was classified with the widely used Hollingshead Four Factor Index.4’ Data analysis. To readily compare measures,we calculated Arch

positive well-being, self-control, positive well-being, self-control.

Z Scores for the FES and FILE, based on means and standard deviations from a reference population. Scores from the TRFCBCL and the CBCL were transformed into T Scores. We used analysis of variance (ANOVA) to determine the statistical significance of differences in outcomes and changes across the three levels of injury severity. Pearson correlation was used to measure the association of outcomes and changes with the continuous version of severity. Change variables were defined as the difference between the 3-month and initial score, the l-year and initial score, and 3-year and initial score. Crosstabulations and chi-square were used to analyze dichotomous NYU-SO strain scoresin relation to categorical severity levels. A p value of < .05 was considered to be significant for ANOVA (not post hoc analyses) and for chi-square analysis where a limited number of questions were addressed.For Pearsoncorrelations and regression analyses, however, a smaller p value (<.Ol) was considered significant to take into account the many comparisons in this part of the analysis. Tukey’s HSD Method,42 which takes into account multiple comparisons, was used for post hoc analyses in ANOVA. Drop-outs and non-drop-outs were compared on measures of family functioning and injury severity using the unpaired t test. To identify explanatory models for each 3-year outcome in an expedient manner, we did a stepwise regression analysis using forward and backward elimination of independent variables with p 5 .Ol to enter and p = .05 to remove. These analyses identified a viable model for each outcome. Because of the number of independent variables considered as potential predictors of each outcome, we included variables only if their significance level in the model was less than .05/K, where K is

PEDIATRIC

TRAUMATIC

BRAIN

INJURY,

757

Rivara

the number of independent variables considered. This Bonferroni adjustment decreases the risk of “false positive” statistical significance. The number of independent predictor variables used in building a model for 3-year outcomes included all those that individually had significant correlations or an a priori strong theoretical justification for inclusion. The number of predictor variables for each of the outcomes was: 11 for family global score (FGAS), 7 for general functioning (FAD), 7 for the mental health index (HIS-GWB), 10 for relationships (FIRS), 7 for cohesion (FES), 8 for coping @IRS), 8 for problem-solving (FAD), 8 for intrafamily stress (FIRS), and 8 for the raw stress score (FILE). The number of independent variables used in the stepwise regression analysis of changes from preinjury to 3 years was 5 for the family global score (FGAS), 5 for the mental health index (HIS-GWB); 4 for relationships (FIRS), 6 for cohesion (FES), and 3 for coping (FIRS). Severity of injury was included in all model-building as a dichotomous independent variable (combining mild and moderate versus severe injuries) because of the similarity of outcomes for families of mildly and moderately injured children and the quite different outcomes for families of severely injured children, as shown in an earlier report6 This dichotomous version of the variable produces an easily interpretable regression coefficient.

and for positive belief systems. The most deterioration occurred by 1 year in the area of family psychological well-being, although by 3 years, the mean had improved somewhat from 1 year levels. For the severely injured group, mean stress level increased between 3 months and 1 year on all scales. The variation on lyear changes across severity levels was statistically significant in 4 out of 5 areas. Interestingly, despite continued deterioration in family relationships, family stress decreased somewhat for the severe group between 1 and 3 years, apparent on 4 out of 5 scales. It appears, however, that there may be a residual effect of strain on family functioning even when the stress itself has lessened, as indicated by the mean changes from preinjury to 3 years. This same effect was seen on the FGAS. Once again there were only small mean changes in overall functioning in families of children with mild and moderate injuries from preinjury to all times up to 3 years postinjury. But whereas by 3 months families of children with severe injuries had shown only a slight deterioration (2.8 change on a loo-point scale), by 1 year the FGAS score had diminished more substantially (-7.4 below preinjury), with only a small additional decline at 3 years (to

RESULTS

showed that almost all of the statistically significant associations of severity with changes presented in table 3 were due to differences between the severe group and one or both of the mild and moderate groups. Standardized measures. The ANOVA analysis for all standardized measures (FE& FILE, and CHIP) showed that the changes from preinjury to 3-month, l-year, and 3-year scores were relatively minor and were not significantly associated with injury severity (data not shown).

Preinjury Family and Child Functioning Preinjury functioning has been previously reported.6 Global scores (FGAS) were in the fair-to-superior range for approximately two thirds of the study families. At least 80% of all families were within the norm on both the FES and FILE. However, 20% of families (2.5% expected), were above the norm for intrafamily strain as measured by the FILE, and more than half were assessed at moderate risk for preinjury global stress and global relationship problems on FIRS. Coping was assessed as being “good” in 60% of families. Fifty-eight percent of the study children were rated by the interviewer as having good preinjury global functioning. Means of parent and teacher CBCL ratings were all within the normal range. Using ANOVA, we found that none of the above preinjury measures varied significantly or in any consistent pattern with the severity of the injury.6

Effect of Injury Severity on Changes in Family Interview Ratings (FIRS) in the First 3 Years After Injury Table 3 shows change in FIRS measures and FGAS from preinjury to 3 months, 1 year, and 3 years postinjury. Although families of mildly and moderately injured children experienced few changes over time, those with severely injured children fared worse, especially in the areas of relationships and coping resources. Changes in family relationships in the mild and moderate groups from preinjury to 3 months, 1 year, and 3 years were relatively small when considering the 5-point range of the scale. In the severe group, there were more substantial negative changes that increased over time, particularly in the first year after injury. The only relationship subscores that showed statistically significant variation by level of injury severity for l- and 3-year changes, however, were the global, marital, and peer relationships. Likewise, only small mean changes occurred in the mild and moderate groups in the areas of coping resources and family stresses. For coping resources, once again, larger mean changes occurred in the severe group with statistically significant variation across severity levels occurring in the areas of global, psychological well-being, ability to utilize resources,

-8.5). Post hoc analyses. A post hoc analysis based on ANOVA

Child Problems Associated With Family Strain at 3 Years Postinjury The percentage of families with medium or greater strain from child problems at 1 and 3 years is shown in table 4, based on the NYU-SO. Families of children with moderate and severe injuries reported more substantial levels of strain than families in the mild group at both 1 and 3 years. At 1 year, from one third to one half of families in either the moderate and severe groups described medium to serious strain in 22 problem areas. This was in contrast to the mild group, which generally had lower levels of associated strain. By 3 years all severity groups reported either a decrease of strain or the level of strain had stabilized in most areas. However, some families felt increasing strain in specific problem areas. Parents of children in the severe group reported the most striking increases related to child dependence (13% to 38%), fatigue (13% to 29%), argumentativeness (19% to 35%), concentration (38% to 47%), and depression (13% to 24%). Parents of children in the moderate group felt substantial increasing strain with their child’s fatigue (19% to 28%), wordfinding (6% to 28%), and difficulty speaking (13% to 39%). Parents of children in the mild group also had substantial increases in strain related to wordfinding (5% to 15%), and additionally to distractibility (8% to 25%), following through (16% to 25%), and irritability (16% to 25%). At 3 years, from 33% to 53% of families in either the moderate and/or severe groups reported a medium to high level of strain associated with 19 of 34 child problems as noted by asterisks in table 4. At least a quarter of parents of mildly injured children also experienced substantial strain associated with distractibility, following through, irritability, impatience, and temper outbursts.

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PEDIATRIC

Table

3: Mean

Changes

Change from Preinjury

Relationships Global Mother Father Siblings Peers Marital Coping resources Global Psychological Belief systems Problemsolving Social support Ability to utilize resources Stresses Global lntrafamily Transitions Loss Drug/alcohol FGAS N for mild deterioration

Mild, Mean (SD)

Moderate, Mean (SD)

.o (.I) (.7) .l (.7) -.l 1.7) -.I (.7) .O (.6)

.O -.2 .4 -.2 .I .I

-.l

l.6)

-.I

(.7)

SfW?rl?, Mean (SD)

(FIRS) From Change from Mild, Mean (SD)

p

(.6) (.9) (.9) l.7) (1.0) l.7)

-.2 -.3 -.2 -.4 -.3 .I

-.3 -.8 -.2

t.6) (1.0) (.5)

.07 .02 .4

-.I -.4 -.I

(.7) (1.1) f.6)

-.2 -.6

.o (.5)

.l (.6) -.2 (.7) .O c.6)

.o (.7) .o (.5)

.O c.6) (.6)

-.I

-.I

t.6) .O LO)

.9 .6

-.I -.2

t.8) (.7)

-.I -.3

.O t.6)

-.I

t.6)

-.I

t.7)

.8

-.I

l.7)

.l (.7)

-.I -.I -.3 .o -.I .2

(.7) (.9) (1.0) (.9) t.31 (6.3)

-.5 -.2 -.6 -.8 .o -2.8

t.91 (1.i) (1.1) (1.3) C.3) (5.5)

.02 .7 .002 ,006 .5 .I

.o l.9) -.3 (.9) -.3 (1.0) .2 (1.3) -.I (.6) -.6 (7.8)

= 20. severe score.

4: Family-Reported

= 18; p based

Strain

on ANOVA

Associated

With

Child

Problems

injury Severity, Problem Area

Visual Balance Does things slowlyt Headaches Fatigues quickly Wordfinding* Word$ Difficulty speaking’ Distractibility’ Concentration+ Forgetfulness+ Organizing Setting realistic goals+ Following through* Apathy Lack of initiative Irritability? Impatience+ Restlessness’ Temper outburs&’ Mood swings Controlling emotions+ Argumentative’ Physically violent Bored’ Complaining Dependent+ Needs Supervision+ Anxious Depressed Loneliness Low sexual drive High sexual drive Changed Personality

Med Rehabil

Vol77,

Postinjury

by Injury

SWN?, Mean (SD)

(.8) 1.9) 1.9) (1.0) (1.0) (.7)

p

Mild, Mean (SD)

1.9) c.8) (1.1) (1.0) l.8) (1.2)

-.5 -.3 -.3 -.4 -.2 .2

l.6) t.6) l.9) (.4) (.9) (.6)

-.a -.6 -.7 -.9 -1.4 -.8

(.7) l.9) (1.0) (1.1) (1.2) (1.0)

.02 .5 .3 .09 .OOOl .Ol

(.6) l.9) .o (.7)

-.6 -1.5 -.6

t.7) (1.4) t.8)

.04 ,003 .02

-.2 -.3 -.I

(.8) C.9) l.7)

.I (.6) -.4 f.8) .2 i.7)

-.6 -1.2 -.7

t.9) (1.1) 1.7)

.02 .006 .0008

f.8) (.6)

-.3 -.3

(.9) (.7)

.4 .6

-.I

1.8) .o t.91

.I f.7) .2 (.6)

-.4 -.4

(.7) c.8)

.I .I

.O 1.6)

-.5

(1.2)

.3

-.I

1.6)

.2 t.6)

-.I

(.9)

.03

-.8 -.7 -.7 -1.0 -.6 -7.4

L.9) i.li (1.2) (1.3) (1.1) (8.7)

,004 .3 ,008 ,002 .02 .Ol

-.2 -.2 .I .I -.I -1.3

(.9) (1.0) (1.5) (1.3) (.8) (8.0)

-.7 -.7 -.2 -.3 -.4 -8.5

(.7) (1.0) (1.3) (1.3) (.9) (7.6)

.I .2 .7 .4 .4 ,004

(.8) (.9) (1.6) (I .3) (.4) (6.8)

three

severity

(NYU-SO)

of Families Indicating

groups

at each time;

at 1 and 3 Years

-.2 -.2 .I -.I -.I - -2.1

negative

Postinjury

1 Year Postinjury

sign consistently

by Injury

injury Severity, Moderate

0 3 8 22 5 5 8 3 8 16 24 16 16 16 5 11 16 30 22 32 16 19 19 16 16 19 11 11 8 5 3 0 3 16

13 19 25 19 19 6 38 ::

40 :ii

.OOOl .Ol .03 .9 .3 ,001 .03 ,004 .OOOl .Ol .3 .04 .03 .Ol .OOOl .03 .02 .5 .4 .07 .07 .04 .09 .9 .06 .Ol .4 .Ol ,008 .03 .03 .2 .4 .5

5 3 8 8 0 15 13 8 25 23 20 20 18 25 5 5 25 26 10 38 20 23 18 8 20 15 5 5 13 5 3 0 5 5

6 17 30 22 28 28 33 39 35 39 39 28 39 44 28 22 44 33 33 33 56 22 33 6 39 28 0 22 28 22 11 0 6 28

3-7 grouped to indicate a medium to high level to high strain in one third to one half of families

(.8) C.9) (1.3) (1.3) (.8) (5.7)

indicates

Severity

Medium to High Family Strain*

Mild

1996

/I

-.2 -.4 -.3 -.3 -.2 -.2

P (x2)

August

SWt?W. Mean (SD)

,008 .8 .2 .2 .04 ,008

Sl?VWS

56 44 44 31 56 31 38 44 47 40 40 44 44 40 13 44 47 27 47 44 33 20 0 13 31

to 3 Years Postinjury

Moderate, Mean (SD)

1.8) C.9) (.8) C.9) (1.5) C.9)

Moderate

19 13 47 27 38 50 38 43 44 53 47 56 38 50 33 25 38 38 50 19 19 13 38 13 38 31 13 25 7 7 25

Severity

Change from Preinjury

Mild

N = 43 mild, 20 moderate, 18 severe. * Degree of strain is rated 1-7. Codes ’ Problem areas which cause medium

Phys

to 3 Years

-.7 -.4 -.4 -.9 -1.1 -.7

-.2 -.3 -.3 -.3 .I -2.3

comparing

Rivara

to 1 Year Postinjury

Moderate, Mean EDI

-.I -.4 .o -.3 -.3 .o

Percentage

Arch

Preinjury

.2 .6 .3 .2 .Ol .6

(.7) (1.0) (1.2) (.5) (4.8)

INJURY,

Preinjury

(1.0) t.9) 1.9) L8) (1.3) t.6)

.o .4 .3 .o .3

1.8) (1.0) (.6) (1.1) 1.8) 1.7)

Functioning

Postinjury

BRAIN

-.3 -.3 .I -.5 -.7 -.3

-3

= 43, moderate from preinjury

Table

in Family

to 3 Months

TRAUMATIC

of strain. of moderately

or severely

injured

3 Years Postinjury SWN?

24 30 41 18 2 35 35 35 47 35 29 24 53 19 29 23 24 18 41 35 35 35 12 12 18 38 44 25 24 30 0 12 29

children

at 3 years

P Ix? ::I .Ol .7 ,001 .08 .Ol .Ol .6 .I .2 .7 .2 .l

.05 .03 .3 .a .02 .03 .03 .6 .03 .8 .2 .5 ,001 ,002 .3 .07 .Ol .O .7 .02

postinjury.

PEDIATRIC

Table

5: Pearson

Correlations

TRAUMATIC

Between Family and Preinjury

BRAIN

INJURY,

759

Rivara

Functioning Outcomes at 3 Years Family and Child Variables

Postinjury,

Injury

Severity,

Outcomes

Gf%leral Functioning Predictor

Severity-LNGCS15 Socioeconomic

Variables

FGAS

status

p.2 .2

Family variables FGAS Relationships-global (FIRS) Mother Father Siblings Peers Parental Cohesion (FES) Expressiveness (FES) Conflict (FES) Activity orientation (FES) Control (FES) Coping (FIRS) Psychological well-being Social support Ability to use resources Positive belief system Problem solving (FAD) Communication (FAD) Roles (FAD) Behavior control (FAD) General functionina (FAD) Mental Health Index (GA) General well-being (GA) Anxiety (GA) Depression (GA) Stress-global (FIRS) lntrafamily Transitions Loss Raw stress (FILE) Family Marital

.7+ .5+ .6+ .4+ .5+ .6+ .4’ .3* -.2 .2 -.2 .7’ .5’ .6+ .6’ .5+ .4+ .4’ .5+ .3’ .4+ .4+ .4+ -.3 -.3+ -.6+ -.6+ -.2 -.3+ -.5’ -.4’ -.4+

Child variables Child functioning global (FIRS) Academic Behavioral Social competence (CBCL) School Behavior problems Adaptive function (TCBCL) Academic Behavior problems

.6+ .4’ .5+ .2 .3* -.3* .6+ .4+ -.3*

(FAD1

Mental Health Index

-

.O .I

.8+

(GA) -.I .l

.4’ .5+ .2* .4+ .4’ .2+ .3* .4’ .5+

(FES)

Cooina (Flk);

-.I

.4+ .4’ .4+ .3 .4* .2 .3 .6+ .4’ -.2 .3 -.I .4* .3’ .4+ .4+ .4+ .6+ .6+ .6+ .4’ .6+ .3* .2 -.2 -.4* -.2 -.3 -.I -.2 -.2 -.2 -.5+

.6+ .5+ .5+ .5+ .3 .3+ .5+ .4+ .3* -.2 .2 -.2 .6* .5+ .6+ .5+ .5+ .3* .4+ .4+ .3 .3* .3* .3 -.3 -. 3 -.4+ -. 57 -.I -.2 -.3+ 2 I:2

.3 .3 .3 .I .O -.2 .3* .I -.3

.4+ .2 .3* .I .2 -.2 .4+ .2 -.4’

-.I

-.l

.2 -.3* .4+ .3+ .4’ .3* .4t Sf .8’ .6+ .6+

-.I -. 4’ -.3f -.4+ -.I -.I -.2 -.2 -.4f

.3* -.2 .4* .3f .5+ .4’ .4+ .3* .4+ .5+ .2 .3 .7t .6’ -.5+ -.7t -.4* .2 .I .1 -.3 -.I -.3

.3’ .3* .3* .2 .I -.3* .3f .I -.2

.2 .I .2 .2 .2 -.3 .l .I -.2

.6+ .4+ .4+ .I .2 -.2 .4+ .2 -.3

Signs of FAD and FIRS (with exception of Stress scales) have poorer functioning onlv on stress scales (FIRS, FILE), conflict CBCL). * p < .Ol. + p < ,001.

Cohesion

-.2 .I .6+ .6+ .5+ .5+ .4+ .4+ .5+ .4+ .3* -.2 .2 -.I .5* .5+ .5+ .5+ .3+ .4’ .4+ .4+ .3* .4+ .3+ .3* -.3* -.3* -.4’ -.5+ -.2 -.3+ -.4* -.4+ -.4’

.3 .2*

.4+ .4+ .3 .3 .3 .2 .2 .3 .3

Relationshiw (FIRS)

.2

-.3* .l

Problem Solvino (FADi

lntrafamily stress (FIRS)

-.l

.2

.2

.2

-.I

-.I

.4+ .4’ .2 .4t .3 .3* .2 .5’ .5+ .2 -.2 -.4* .3+ .3* .3+ .4+ .8+ .5+ .5+ .4+ .tP .4+ .3 -. 2 -. 2 -.3* -. 3* -.I -.I -. 2 -. 3 -. 4’

-.6’ .6+ -.3* -.5+ -.4+ -.3* -.5+ -.4* -.3 .2 -.I .I -.4+ .5’ -.4+ -.4+ -.3* -.3* -.3* -.4+ -.2 -.3* -.3* -.3 .3* .3* .4+ .6+ .I .2 .3* .3* .3*

-.4+ -.3* -.2 -.2 -.2 -.2 -.3* -.I -.I .I -.l -.I -.3* .3* -.2 .2 .3 -.I .O -.4+ -.I -.I -.3* -.3* .2 .3 .3* .2 .2 .2 .3* .4* .2

.3* .2 .3* .2 .I -.2 .2 .I -.I

-.4’ -.4+ .4t -.I -.2 .2 -.4’ -.3* .4+

-.2 -.3* .I -.2 -.3 .3 -.3 -.2 .2

-.I

been reversed so that higher scores reflect better functioning. and control (FES), anxiety and depression (GA), and behavior

Association of Preinjury Variables With 3-Year Family Functioning Outcomes We wanted to identify associations between preinjury variables and 3-year family functioning outcomes. Many strong and statistically significant correlations were found (table 5). Among the 405 correlations in the table, 251 were statistically significant with p < .Ol (4 would be expected by chance) and 71 of the correlations were 0.5 in magnitude or larger (0 or 1 would be expected by chance). Good outcomes in most areas were moderately to highly correlated with strong family relationships, cohesion, coping, psychological well-being, social support and problem solving, a positive belief system, good communication, and a positive mental health index. Scores for families under stress and for families having high levels of anxiety and depres-

Raw stress SCOW (FILE)

Higher scores indicate problems (CBCL, TRF-

sion were significantly correlated with poorer outcomes in many of the above areas and positively associated with high levels of stress at 3 years. Families from more poorly functioning households, with fewer coping skills, more anxiety and depression, and poorer family relationships had significantly higher levels of stress at 3 years. In general, good preinjury child functioning was also positively and significantly correlated with good family outcomes at 3 years. The many strong correlations in table 5 are likely due to the persistence of basic family functioning patterns across the injury and postinjury period. When the whole study group was considered, injury severity, as measured by length of time to a GCS score of 15, was significantly correlated with only one outcome variable (coping), as noted in table 5.

Arch

Phys Med Rehabil

Vol77,

August

1996

760

PEDIATRIC

Table Outcome

Family

global

6: Pearson

(FES)

General

functioning

Roles

control

(FGAS)

Variables

(FAD) (FAD)

(FAD)

Problem

(FAD)

(FIRS)

BRAIN

and Selected

Control Expressiveness Control Expressiveness Control Expressiveness Control Expressiveness Control Expressiveness Control Expressiveness Control Expressiveness Control Expressiveness

(FAD)

solving

Preinjury Preinjury Predictor

Communication

Stress

Between

Variable

score

Cohesion

Behavior

Correlations

TRAUMATIC

Whole Group

INJURY,

Family

Rivara

Outcome

Variables Mild

.3* -.l .4’ -.3 .5t -.I .I -.I

.3 -.I .3 -.2 -.5’ .I -.2

Arch

Phys Med

Rehabil

Vol77,

August

1996

by Injury

Severity

Moderate

-.I

-.2

.2 -.2 .I .O .4 -.2 .I .I .2 -.I .5* -.l .5 -.I

Signs of FAD have been reversed to be consistent with other measures. On measures which are reflect functioning. Higher score indicates poorer functioning only on stress (FIRS) and control (FES). *p< .Ol. fp < .OOl.

Family Variables That Served as Moderators of Outcome and Change from Preinjury to 3 Years for Families of Severely Injured Children We reviewed the correlations between 3-year outcomes and preinjury family predictors for each severity group separately and noted that some large and significant correlations within the severegroup were not reflected in correlations for the overall sample. We screenedall pairwise correlations between predictor and outcome variables for a pattern of stronger and statistically significant correlations in the severe group and weaker correlations in the mild and moderate groups. Only two predictor variables, control and expressiveness,emerged fairly consistently in this pattern. Table 6 shows the correlation of the major outcome variables with preinjury control and expressiveness.Low levels of control (rigidity) and high levels of expressiveness were much more strongly correlated with positive 3-year outcomes among families of severely injured children. Families who were more expressive and less controlling tended also to be more cohesive and better in their general functioning, communication, problem solving skills, and behavior control, and had a lower stress level. Thus, the linkage between good family outcomes and being more expressive and less rigid was not masked in the severe group by use of other undepleted coping resources that were available to the mild and moderate groups. A number of preinjury family variables also were identified as having strong correlations with 3-year changes in the severe group only, analogous to the severity-dependent correlations described in the preceding section. We again screened pairwise correlations between predictor variables and the 3-year change variables to detect those variables with a pattern of strong and statistically significant correlations in the severe group and weaker correlations in the mild and moderate groups. A number of family predictors emerged (table 7). In the severe group, greater family cohesion was significantly and positively correlated with preinjury levels of global and general functioning, communication, and coping skills, and negatively associated with stress. Likewise, an increase in social support was positively correlated with good communication, flexible family roles, and good general functioning. Family conflict was correlated with deterioration in family coping. Lower levels of family activity appeared to increase stress for the severe group over time, and less clear family roles and less expressivenesswere associated with an increase in parental depression. In relation to the strong findings on control and expressiveness in table 6 we present correlations in table 7 for control

at 3 Years

positive

concepts,

SC3WXe

.O

-. 8’

.I .I .3 -.3 .3 .I .2 .O .I .2 .I -.2 .O .I -.I

.7t -.T .9+ -A* .8’ -.8’ .4 -.5 .6* -.6* .8? -.5 .9+ .8+ -.6*

higher

scores

indicate

better

and expressivenesswith the corresponding 3 outcome variables which had both a preinjury and a 3-year assessment (family global score, cohesion, and stress).In each case the correlation among the severes was stronger in the expected direction than the correlation in the whole, mild, or moderate groups. For example, among the correlations between control and cohesion, only the correlation for severes was negative, indicating that greater family control is associated with a negative change in cohesion from preinjury to 3 years. Despite these findings, the only change variable significantly correlated with control or expressivenesswas the family global score in the severe group. Models for Predicting 3-Year Family Outcomes and Change Based on Injury Severity and Preiujury Family and Child Functioning Models for the prediction of 3-year outcomes. To develop models for the prediction of specific 3-year outcomes, we considered those preinjury variables that had either a strong theoretical basis as predictors or had highly significant correlations 0, < .OOl) with the outcomes. Stepwise regression analyses were then used to select important variables from this list. The final regression models for predicting 3-year outcomes are shown in table 8. For 4 out of 9 outcomes, the preinjury version of the variable was the best single predictor among all variables considered, a result consistent with the correlations of table 5. More than two thirds of the variation in the family global score at 3 years could be explained by the preinjury counterpart and injury severity. Likewise, 79% of the variation in family relationships was predicted by preinjury relationships and injury severity. Other family outcomes had lower values for R’. Injury severity was not a helpful predictor for 6 out of the 9 outcomes, suggesting that preexisting family patterns dominate injury effects in these areas. Models for the prediction of change from preinjury to 3 years. The final stepwise regression models for change between preinjury to 3 years are shown in table 9. From 28 to 44% of the variation in change could be explained by the preinjury variables in the these models. Injury severity emerged as a predictor of change for only one outcome variable (relationships), a finding that supports the strength of preinjury factors even in the presence of substantial family strain after severe head injury. Preinjury child functioning was not a predictor of family change in any of the models with the exception of family cohesion. Other models with lower Rz values were developed both for 3-year outcomes and changes from preinjury to 3 years, but are not shown here.

PEDIATRIC

Table

7: Pearson

Outcome

Family

global

Cohesion

Social

Correlations

score

support

(FGAS)

and Selected

Change

BRAIN

INJURY,

Variables

Variable

(FIRS)

(FILE) (FIRS)

(HIS-GWB)

761

Rivara

from

Preinjury

DISCUSSION Preinjury Family and Child Factors Predictive of Outcome and the Effect of Injury Severity on Change in Functioning Results from this study support and extend our previous findings establishing the importance of preinjury factors and injury

8: Stepwise

Outcome

Family

global

General

Mental

Relationships

Cohesion

Coping

Variable

score

(FGAS)

functioning

health

Regression

(FAD)

index

(HIS-GWB)

(FIRS)

(FE9

(FIRS)

Problem

solving

lntrafamily

Stress

Raw stress

score

(FAD) (FIRS.1 (FILE)

Models

for Family

Outcomes

at 3 Years

-.2 .O .I .2 .2 .2 .2 .2 -.I .3 -.I .I .2 .I -.2 .I .2 .I .O .O .I .I .I .3 .I -. 2 -.2

-.I -.l .O .O .O .O .O .O .O .5 -.2 -.2 .I .I -.2 -.I -.I -.I .O .O .I .I .I .2 -.2 -. 2 -.2 where higher (FES).

scores

by Injury

Severity

Moderate

Severe

-.2 -.2 .3 .O .3 .O -.2 .2 -.2 .4 -.3 .I .O .O -.I -.4 -.2 .2 .4 .6* .O .I -.3 .2 -.I -.2 -.2

.8X A .7* .7* .6* .5* .7* .6* -.7* -.4 .4 .5* .6* .6* -.6* -.6* -.7* .7* .6* 23’ -.7* -.7* -.5* .4 -A -.7’ -.6*

indicate

better

functioning.

severity in family functioning following childhood TBI. Consistent with data presented in our l-year report,6 preinjury family variables explained more of the variation in 3-year family outcomes and changes in functioning than all other predictors ineluding severity of injury. Despite this finding, severity of the injury also had a substantial impact on families as indicated by several key findings. Patterns of strain at 3 years postinjury. In the families of Based

on Injury

Predictors

FGAS Injury severity Constant Relationships (FIRS) Expressiveness (FE9 Constant Depression (HIS-GWB) Roles (FAD) Constant Injury severity Relationships (FIRS) Roles (FAD) Constant Marital stress (FILE) General functioning (FAD) Constant Injury severity Coping (FIRS) Parent relations (FIRS) Constant Expressiveness (FES) Constant Relationships (FIRS) Constant Raw stress score (FILE) Constant

Postinjury

Mild

Signs of FAD and FIRS (except stress subscales) were reversed to be consistent with other measures, Higher scores indicate poorer functioning on stress (FIRS, FILE), depression (GA). conflict and control * p < .05. +p < ,001.

Table

to 3 Years

Whole Group

Control (FES) Expressiveness (FES) FGAS Coping (FIRS) General functioning (FAD) Roles (FAD) Ability to use resources (FIRS) Communication (FAD) Stress (FIRS) Control (FES) Expressiveness (FES) Communication (FAD) Roles (FAD) General functioning (FAD) Employment stress (FIRS) Conflict (FES) Conflict (FES) Activity orientation IFES) Problem solving (FAD) Communication (FAD) Activity orientation (FES) Activity orientation (FES) Roles (FAD) Control (FES) Expressiveness (FES) Roles (FAD) Expressiveness (FES)

Coping (FIRS) Relationships (FIRS) Expressiveness (FIRS)

Depression

Preinjury Predictor

(FES)

Stress Stress

Between

Variable

TRAUMATIC

.85 -2.09 10.79

.I6 .I8 1.38 -.67 .54 5.20 -.I8 .65 .80 -.80 -.73 1.71 2.64 -.20 .46 .24 .42 .21 2.03 -.63 1.53 .53 .05

Severity

and Preinjury

SE

P

.08 .72 5.89 .05 .04 .I6 .I0 .I9 .39 .06 .I1 .27 .52 .22 .31 .62 .06 .I2 .07 .26 .04 .05 .I3 .37 .I2 .I1

.OOOl ,005 .07 ,005 .OOOl .oooo .oooo ,007 .oooo .005 .oooo ,002 .I3 .002 .0002 .OOOl ,001 .0002 ,001 .I2 .oooo .oooo .oooo .OOOl .oooo .69

Signs of FAD and FIRS (except stress subscales) were reversed to be consistent with other measures, Higher scores indicate poorer functioning on stress (FIRS, FILE), depression (GA). and conflict (FES).

where

Arch

higher

Family

and Child

Predictors

Standardized Regression Coefficient

-

.69

.31 .48

.41

.58

-.61 -.27 .24 .55 .30

.79

-.31 .52

.48

-.30 .41 .35

.54

.56

.31

-.51

.26

~.51 scores

Phys Med

indicate

Rehabil

R2

.77 p.21

better

Vol77,

.26 functioning.

August

1996

762

PEDIATRIC

Table

9: Regression

Models

Change Variable

Global

Score

(FGAS)

Mental

Health

Index

(HIS-GWB)

Cohesion

lntrafamily

(FE.9

(FIRS)

Signs of FAD and FIRS (except stress subscales) were reversed Higher scores indicate poorer functioning on intrafamily stress

to be consistent and loss (FIRS).

the severegroup at 3 years postinjury, family global functioning (FGAS) and relationships as a whole had failed to improve despite overall levels of diminishing stress. In addition, child problems caused strain at 1 and 3 years in families of both moderately and severely injured children, more so than among families of mildly injured children. From one third to one half of parents of children in the moderate or severe group or both experienced substantial ongoing strain with their child’s problems (ie, slowness,language problems, distractibility, poor concentration, forgetfulness, difficulty in following through, restlessness, temper outbursts, mood swings, ability to control emotions, argumentativeness, dependence and need for supervision). From one fourth to one third of parents of children in the mild group also described the most substantial strain related similar areas including distractibility, following through, irritability, impatience, and temper outbursts. These findings lend support to those of investigators in the field of adult TBI. Brooks and associates”,12described increasing strain and burden in families with increasing post traumatic amnesia. In their 2- to 7-year follow-up report,12 families of more severely injured adults reported high burden with certain types of problems: language problems (ie, articulation, difficulty holding a conversation), subjective problems (ie, tiredness, restlessness),emotional changes (ie, anger, irritability, impatience, depression, and personality change), and dependency. These results are remarkably similar to our own. Findings by Kreutzer and colleagues’6partially supported those of Brooks and associates” in which the family’s reaction to the injured person’s behavioral problems had the strongest relationship to family members’ distress. Hall and associates17reported that relatives described increasing problems over a 2-year period in their injured family member without an accompanying increase in stress themselves. The exception was for those families who had an at-risk psychosocial history. Caretakers reported that they had an increase in medication and substance use and decreases in employment and financial status during the same period of time. This led investigators to speculate that as “subjectively experienced” stress decreased, it was manifested in family behavioral events such as substance use. Similarly, despite diminishing stress and strain between 1 and 3 years in our study families, family global functioning, relationships, and coping resources of the families of severely injured children did not rebound. In fact, it deteriorated somewhat from 1 to 3 Arch

Phys Med

Rehabil

Vol77,

August

1996

INJURY,

Rivara

for Change in Family Functioning from Preinjury Status to 3 Years on Injury Severity and Preinjury Family and Child Predictors

Loss (FIRS) Behavior control (FAD) Constant General well-being (HIS-GWB) Constant Injury severity Relationships (FIRS) Roles (FAD) Constant Cohesion (FES) General functioning (FAD) Child social (FIRS) Constant lntrafamily stress (FIRS) Roles (FAD) Constant

(FIRS)

stress

BRAIN

Predictors

Family

Relationships

TRAUMATIC

Postinjury

Standardized Regression Coefficient

Coefficient

SE

P

-3.12 8.41 3.30 .42 1.47 -.16 .31 .93 .97 .58 1.56 .04 4.70 .53 -1.24 -.71

.73 2.70 4.58 .09 .35 .06 .09 .23 .45 .I0 .31 .02 .90 .I1 .30 .64

.OOOl .003 .47 .oooo .oooo ,007 ,002 .0002 .04 .oooo .oooo .0076 .oooo .oooo .OOOl .2664

with

other

measures,

where

higher

Based

scores

indicate

RZ

-.45 .33

.28

.51

.26

-.29 .37 .46

.30

.57 .53 .26

.44

.51 .43

.32

better

functioning.

years, in contrast to families of the other groups whose scores continued to improve over the same interval. Models of adaptation and family resilience and their application to study jindings. McCubbin and Patterson’s4’ Family Adjustment and Adaptation Response (FARR) model is helpful in interpreting our results. At its simplest level, it statesthat the ability of a family to adapt to a stressful event, situation, or illness depends on the relative balance between the “demands” (stressesand strains) experienced by the family and its “capabilities” (resources and coping strengths). Central to the framework is the notion that the traumatic event or illness has subjective “meanings” for the family. The interpretations the family ascribes to the illness or crises and the existing set of beliefs or schema on which they base their response are critical factors in achieving a balance that can either place more demands on the family or increase their capabilities for coping. For instance, if families view their medical situation as hopeless, or if they feel responsible for the illness or event as well as the outcome, these interpretations may increase the stress or demands they experience. Conversely, when parents have confidence in their own abilities, a realistic attitude about treatment, or believe the illness or crisis provides an opportunity to grow closer, capabilities increase and positive adaptation is more likely. Adaptation is a fluid and continuous process and family systems theory emphasizesthe mutual interconnectednessof the individual, family, and community adaptation. Many studies of family response to childhood chronic illness are relevant to and consistent with our findings. McCubbin and Huang** reported that stressorsfor families with children living with cerebral palsy increased with increasing severity of impairment, and Tew and Lawrence2” noted higher stress in mothers of children with more severely handicapping spina bifida. Studies show that there are certain generic traits of family resilience that are associatedwith good functioning after chronic illness or disability. Beavers and coworker? reported that among families with retarded children, the most healthy families were able to balance the needs of the child with the needs of all other family members. The ability to engage in active coping efforts46 and the maintenance of ongoing collaborative relationships with professionals47have also been reported to be important factors in ongoing positive adjustment. Frey and colleagues‘a found that families who had a strong social network adjusted better to the demands of having a handicapped child,

PEDIATRIC

TRAUMATIC

and higher levels of cohesion were found by Kazak2’ to be associated with positive adaptation in families of institutionalized retarded children. Families who were more expressivewere reported to have better long-term coping with pediatric leukemia by Kupst and Schulman,26 and Watson and associatesz7found that families of hearing-impaired youth who used flexibility in defining their expectations had better outcomes. Austin and McDermott” reported that parents who had more positive attitudes toward their child’s epilepsy were able to adapt and cope with their situation better than other families. Moderators of outcome. Our findings support these reports on family adjustment after childhood chronic illness and show that specific variables emerged as important moderators of positive 3-year family outcomes. Lower levels of control (rigidity) and higher levels of expressivenesswere important predictors of positive 3-year outcomes, especially among families of the severely injured group. These findings support the view that when family members openly communicate their concerns and needs with one another, they can move forward and do what needs to be done to adjust to challenges following a traumatic injury. Parents of children with TBI as well as those with chronic illness may become rigid and overprotective in their need to maintain control. Their ability to adapt to ever-changing circumstances is vital when demands are so numerous. In addition, our findings indicate that families in the severe group relied on specific coping resources to prevent deterioration after injury even more than those families of the mild and moderate groups. Good overall preinjury functioning, strong support systems, involvement in outside activities, good communication and problem solving skills, and low levels of family conflict and stresswere strong predictors of positive adjustment over time. Consistent with Patterson and McCubbin’s FAAR model, families of children at all severity levels reported better functioning when their stresseswere counterbalanced by strong capabilities and coping resources. These coping resources included a positive belief system, which most likely allowed them to define their situation in a more manageable way and reduce the overall demands of their experience. Study Limitations Several potential limitations to the study should be considered. The assessmentof preinjury child and family functioning was necessarily performed after the injury event. The fact that there were no significant or substantial differences by injury severity in any of the preinjury measures supports our belief that these measures were reasonably accurate reflections of the child and family conditions prior to the injury. We used FAD at 3 years as a proxy for preinjury FAD motivated by the high correlations between the preinjury and 3-year family measures. It is possible that some of the correlations of outcome measures at 3 years with the proxy FAD are due to the FAD and other measures being assessedat a similar time, rather than to (unmeasured) premorbid family status as reflected in the 3-year FAD. Both potential benefits and liabilities exist because the same interviewer completed assessmentsthroughout the study. Despite the benefit of consistency, the interviewer was not blinded to previous responses by the interviewed parent. However, as stated earlier, interrater reliability and construct validity were good. In each family, only one parent or guardian completed the interviews and standardized questionnaires. Although the responses were obtained consistently from the same guardian, a bias may have been created by not seeking responses from

BRAIN

INJURY,

763

Rivara

additional family members. Limitations on study resourcescontributed to this decision. Nevertheless, proxy research in national studies indicates that mothers, our predominant source of information, are by far the most frequently used and accurate informants on matters related to their children.49 We excluded children who had previous head injuries, psychiatric histories, and were non-English-speaking, potentially biasing the study toward families with better preinjury functioning and higher socioeconomic status.Additionally, families who dropped out of the study had lower socioeconomic status and family functioning scoresthan those remaining in the study. All of these families are potentially at highest risk and, therefore, we may have had slightly reduced power to detect the negative impact of preinjury family dysfunction on outcomes. Study Implications The families of our severely injured children were at higher risk than those with less severe injuries, their stress greatest and coping resources most likely to be depleted. The risk of deterioration was greatest among families when the scale before the injury was already tipped heavily in the direction of unbalanced stress. These families had higher levels of intrafamily and marital stress,depression, and mental health problems, less ability to adapt to the changing roles and requirements of the household, a less positive belief system, and fewer capabilities. The families in our study who were most successfulin adapting to the challenges of TBI were those who were more capable before the injury, had more social support and problem-solving skills, used resources more effectively, had greater involvement in activities, were more cohesive, had better family relationships, better communication, were more expressive, and had a more positive belief system than those who had poorer outcomes. Our results attest to the ability of many families to adjust in the face of a devastating event such as severe TBI with its longterm cognitive, behavioral, and physical sequelae. Families at risk for future problems can be well-identified at the time of injury. Those who are functioning poorly prior to the injury at all levels will likely continue to do so unless provided with support that reduces their demands and increases their coping resources. In addition, families of children with severe injuries at all levels of preinjury family functioning will more likely experience significantly higher levels of stressand strained family relationships than families with less severely injured children. These families especially need to understand the importance of maintaining open lines of communication and flexibility in the midst of enormous change for the entire family. The ability to use resources and maintain outside involvement in activities appears to be helpful to families of severely injured children. Families of children with TBI deserve thorough family assessment. If those at highest risk are to effectively cope with the additional stress of TBI and help their child to achieve optimal functioning over time, appropriate supportive and therapeutic services must be available. Families can and should be encouraged to communicate openly and to maintain flexibility in responding to the enormous changes which they encounter in their personal lives following injury. Maintaining a balance between the demands they experience and the capabilities they have or develop is essential. Hopefully they can also find a managable way to interpret this unanticipated and sometimes tragic event, which will provide them hope and comfort during the process of rehabilitation and community reentry. Acknowledgment:

The authors

Arch

gratefully

Phys Med

acknowledge

Rehabil

Vol77,

the helpful

August

1996

764

PEDIATRIC

TRAUMATIC

assistance of Nancy Angell, Hillary Shurtleff, PhD, Bryan Senn, Frederick Rivara, MD, the emergency room staff at Children’s Hospital Medical Center and Harborview Medical Center, the Washington State Office of the Superintendent of Public Instruction, the 37 participating local school districts, and most importantly, the children and families without whom this study would have been impossible. References 1. Jaffe KM, Fay G, Polissar NL, Martin K, Shurtleff H, Rivara JB, et al. Severity of pediatric traumatic brain injury and neurobehavioral recovery at one year-a cohort study. Arch Phys Med Rehabil 1992;74:587-95. 2. Fay GC, Jaffe KM, Polissar NL, Liao S, Rivara JB, Martin KM. Outcome of pediatric traumatic brain injury at three years: a cohort study. Arch Phys Med Rehabil 1994;75:733-41. 3. Chadwick 0, Rutter M, Brown G, Shaffer D, Traub M. A prospective study of children with head injuries: II. Cognitive sequelae. Psycho1 Med 1981;11:49-61. 4. Waaland P, Kreutzer J. Family response to childhood traumatic brain injury. J Head Trauma Rehabil 1988;3:51-63. 5. Martin D. Children and adolescents with traumatic brain injury: impact on the family. J Learn Dis 1988;21:464-70. 6. Rivara JB, Fay G, Jaffe KM, Polissar NL, Martin K. Predictors of family functioning one year following traumatic brain injury in children. Arch Phys Med Rehabil 1992;73:899-910. 7. Rivara JB, Jaffe KM, Fay GC, Polissar NL, Martin KM, Shurtleff H, et al. Family functioning and injury severity as predictors of child functioning one year following traumatic brain injury. Arch Phys Med Rehabil 1993;74:1047-55. H, 8. Rivara JB, Jaffe KM, Polissar NI, Fay G, Martin KM, Shurtleff et al. Family functioning and children’s academic performance and behavior problems in the year following traumatic brain injury. Arch Phys Med Rehabil 1994;75:369-79. 9. M&inlay WW, Brooks DN. The short term outcome of severe blunt head injury as reported by the relatives of the injured person. J Neurol Neurosurg Psychiatry 1981;44:527-33. 10. Rosenbaum M, Najenson T. Changes in life patterns and symptoms of low mood as reported by wives of severely brain-injured soldiers. J Consult Clin Psychiatry 1976;44:881-8. C, Beattie A, McKinley W. The 11. Brooks N, Campsie L, Symington five year outcome of severe blunt head injury: a relative’s view. J Neurol Neurosurg Psychiatry 1986;49:764-70. 12. Brooks N, Campsie L, Syminton C, Beattie A, McKinley W, et al. The effects of severe head injury on patient and relative within seven years of injury. J Head Trauma Rehabil 1987;2:1-13. 13. Rappaport M, Herrero-Backe C, Rappaport ML, Winterfield KM. Head injury outcome up to ten years later. Arch Phys Med Rehabil 1989;70:885-92. 14. Thomsen IV. Late outcome of very severe head trauma: a lo-15 year second follow-up. J Neurol Neurosurg Psychiatry 1984;47: 260-8. 15. Oddey M, Humphrey M. Social recovery during the year following severe head injury. J Neurol Neurosurg Psychiatry 1980;43:798802. 16. Kreutzer JS, Gervasio AH, Camplair PH. Patient correlates of caregivers’ distress and family functioning after traumatic brain injury. Brain Inj 1994;8:21 l-30. P, Stevens M, Englander J, O’Hare P, Wright 17. Hall KM, Karzmark J. Family stressors in traumatic brain injury: a two-year follow-up. Arch Phys Med Rehabil 1994;75:867-84. 18. Livingston MG, Brooks, DN, Bond MR. Patient outcome in the year following severe head injury and relative’s psychiatric and social functioning. J Neurol Neurosurg Psychiatry 1985;48:876-81. 19. McCormick M, Charney E, Stemmler M. Assessing the impact of a child with spinal bifida on the family. Dev Med Child Neurol 1986;28:53-61. 20. Begleiter M, Burry V, Harris D. Prevalence of divorce among parents of children with cystic fibrosis and other chronic diseases. Sot Biol 1976;23:260-4. 21. Gath A, Smith M, Baum J. Emotional, behavioral and educational disorders in diabetic children. Arch Dis Child 1980;55:371-5.

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22. McCubbin M, Huang ST. Family strengths in the care of handicapped children: targets for intervention. Fam Relations 1989; 38: 436-43. 23. Tew B, Laurence K. Some sources of stress in mothers of spina bifida children. Br J Preventive Social Med 1975:29:27-31. 24. Kupst MJ, Schulman JT. Long-term coping with pediatric leukemia: a six year follow-up study. J Pediatr Psycho1 1988; 13:7-10. 25. Spinetta JJ, Murphy JL, Vik PJ, Day J. Long-term adjustment in families of children with cancer. J Psychosoc Oncol 1988;6:17991. 26. Patterson JM. Critical factors affecting family compliance with home treatment for children with cystic fibrosis. Fam Relations 1985;34:79-89. 27. Watson SM, Henggeler SW, Whelan JP. Family functioning and the social adaptation of hearing impaired youths. J Abnorm Child Psycho1 1990; 18: 143-63. 28. Frey KS, Greenberg MT, Fewell RR. Stress and coping among parents of handicapped children: a multidimensional approach. Am J Ment Retard 1989;94:240-9. in families with older institutionalized 29. Kazak A. Family functioning retarded offspring. J Autism Dev Discord 1989; 19:501-9. 30. Austin JK, McDermott N. Parental attitude and coping behavior in families of children with epilepsy. J Neurosci Nurs 1988;20: 174. 9. 31. Fay GC, Jaffe KM, Polissar NL, Liao S, Rivara JB, Martin KM. Outcome of pediatric traumatic brain injury at three years: A cohort study. Arch Phys Med Rehabil 1994;75:733-41. 32. Teasdale G, Jennett B. Assessment of coma and impaired consciousness: a practical scale. Lancet 1984;2:81-4. 33. Achenbach TM, Edelbrock C. Manual for the child behavior checklist and revised child behavior profile. Burlington: University of Vermont Department of Psychiatry, 1983. 34. Achenbach TM, Edelbrock C. Manual for the teacher’s report form and teacher’s version of the Child Behavior Profile. Burlington: University of Vermont Department of Psychiatry, 1986. 35. Moos RH. The social climate scales: an overview. Palo Alto, CA: Consulting Psychologists Press, 1974. 36. McCubbin HI, Patterson JM, Wilson L. Family inventory of life events and changes (FILE) Form A. In: McCubbin HI, Thompson A, editors. Family assessment for research and practice. Madison: University of Wisconsin Press, 1980. 37. Eustein NB. Baldwin LM. Bishou DS. The McMaster Familv Assessment Device. J Marital Fam &Therapy 1983;9:171-80. . 38. Brook RH, Ware JE, Davies-Avery A, Stewart AL, Donald CA, Rogers WH, et al. Conceptualization and measurement of health for adults in the health insurance study. Med Care 1979;7 Suppl7: 16S-55s. 39. Mrazek D. Family Global Assessment Scale (FGAS): initial reliability and validity. In: Proceedings from the 32nd annual meeting of the American Academy of Child Psychiatry, San Antonio (TX), Ott 23-27, 1985. 40. Kay T, Ezrachi 0, Cavallo M. Head injury family interview: Problem checklist of significant other interview. New York NYU Medical Center, Department of Rehabilitation Medicine, Research and Training Center on Head Trauma and Stroke, 1988. 41. Hollingshead AB. Four Factor Index of Social Status. New Haven (CT): Yale University Department of Sociology, 1975. 42. Winer BJ. Statistical principles in experimental design. 2nd edition. New York: McGraw Hill, 1978. 43. McCubbin HI, Patterson JM. The family stress process: the double ABCCX model of family adjustment and adaptation. In: McCubbin HI, Sussman M, Patterson JIM, editors. Social stress and the family: advances and developments in family stress theory and research. New York: Haworth, 1983. 44. Beavers J, Hampson RB, Hulgas YF, Beavers WR. Coping in families with a retarded child. Fam Proc 1986:25:365-78. 45. Hauser ST, Jacobsen D, Wertlieb B, WeissPB, Follansbee D, Wolfselorf JI. Children with recently diagnosed diabetes: interactions with their families. Health Psycho1 1986;5:273-6. AM. Family stress and ways of coping with adolescents 46. Donavan who have handicaps: maternal perceptions. Am J Ment Retard 1988; 92:502-9. home care make a difference 47. Stein RE, Jessup DJ. Does pediatric for children with chronic illness: findings from the pediatric ambulatory care treatment study. Pediatrics 1984;73:845-53.