Table 1.

A Comparison of Studies of Caregiver and Family Functioning in Traumatic Brain Injury

Reference	Unit of Analysis	Conceptual Framework	Study Design	Sample	Instrument(s) Used to measure Caregiver/Family Function	Findings/Comments
(Anderson et al. 2002)	Spouse/Partner of TBI survivor	Hobfoll and Spielberger’s COR theory of psychological distress and Epstein’s McMaster Model of Family Functioning	Path Analysis	N=74 Spouse/partners of TBI survivors (age range of TBI patient 27–75; time since injury 5–184 months)	Problem Checklist of General Health and History Questionnaire; Family Assessment Device; Global Severity Index; Brief Symptom Inventory (BSI)	TBI survivor behavioral problems were strongest predictor of caregiver psychological distress. Communication and social problems have linear relationship with symptoms of psychological distress.
(Brown et al. 1999)	Individual caregivers	None	Quasi- experimental pre/post-test design; evaluate effectiveness of face-to-face vs. phone caregiver support groups	Caregivers (family member or s.o.) living within 40km (n=169) vs. those living >40km (n=146)	POMS; Caregiver Burden Inventory; McMaster Model Family Assessment Device	Similar results seen with both methods. Rural phone support group participants reported fewer difficulties on most scales so may be good option for this population.
(Carnevale et al. 2002)	Dyad	Stress-Appraisal- Coping Model	RCT of Educational program and education plus behavior management vs. control	n=27 TBI survivors and their caregivers (n=27)	Questionnaire on Resources and Stress for Families with Chronically Ill or Handicapped Members; Maslach Burnout Inventory	Initial levels of caregivers’ burden and distress were highly predictive of those at 14 weeks (outcome). Low sample size per group
Ergh et al. (2003)	Dyad	Well-being	Cross-sectional (range post- injury 4 months to 10 years)	N=120 (60 pairs of TBI survivors and caregivers)	Neuropsychology Behavior and Affect Profile– Significant Other Form; Social Provision Scale; Satisfaction with Living Scale	Social support found to be positive mediator; however, TBI survivor neurobehavioral issues were associated with lower caregiver life satisfaction regardless of social support.
Gan & Schuller (2002)	Family (also reported BI vs. family)	Family Systems Framework	Cross sectional; instrument development	N=92	FAM-III	Family defined as those living in same household. See Gan et al. (2006) as includes this sample. Family perceived greater differences in functioning than BI person.
(Gan et al. 2006)	Family System (also reported individual)	Family Systems Framework	Cross sectional; At time seeking rehab services; instrument validation	N=214 from registry; 66 BI persons and 148 family members. (Mean time since injury 5.7 years; ages of FM ranged 14– 55.)	FAM-III	Family defined as those living in same household. Pooling effect seen when family unit of analysis; however fathers reported less stress when analyzed individually. BI families statistically different from normative; but unclear if clinically significant as still in “normal range”.
(Godfrey et al. 2003)	Individual caregiver	None	Cross sectional; Instrument validation (factor analysis)	N=242 88 parents, 81 spouses, 11 siblings, 34 other relatives, 14 friends and 13 other acquaintances (e.g. professional caregivers)	Head Injury Behavior Scale	2 factor solution Emotional and Behavioral Regulation.
(Hanks et al., 2007)	Individual caregiver	Stress-Appraisal- Coping Model	Cross-sectional (6 months-15 years post- injury)	N=60 primary caregivers of persons with TBI	Caregiver Appraisal Scale; Coping Inventory for Stressful Situations; Family Assessment Device; Social Provisional Scale	Perception of social support is highly related to perceived burden, caregiving mastery and satisfaction. Coping style was related to caregiving satisfaction: better among those who use task- oriented coping and less emotion- focused coping.
(Harris et al. 2001)	Individual caregivers	Stress-Appraisal- Coping Model	Cross sectional (between 6 months and 3 years following injury)	N=58 Caregivers identified by persons with TBI (age of TBI survivor ranged 15–64; 47% parents; PTA 24h-10 weeks)	Social Behaviour Assessment Schedule; Zung Depression Scal	23% of caregivers were experiencing clinically significant levels of depression. Caregiver reports of behavioral problems, social role problems, and adverse effects were correlated to depression scores. Perceived support was also predictive of depression in this model.
(Katz et al. 2005)	Wife	Brooks and Aughton’s subjective vs. objective caregiver burden	Cross sectional	N=40 wives of persons with TBI (range of time since injury 1–32 years)	Perceived Burden Questionnaire; Lester’s ways of Coping Questionnaire	Wives with low coping flexibility were perceived to have higher burden at earlier times after injury; however ? if analysis done correctly as df incorrect for interaction term.
(Kolakowsky-Hayner et al. 2001)	Individual caregiver	None	Cross sectional at least 4 years post injury	N=57 caregivers of persons with TBI (age range 19–82; 72% lived with person; 35% spent q day with)	Virginia Traumatic Brain Injury Family Needs Assessment Survey	Study demonstrated a decline in family members’ quality of life after injury relative to preinjury (but 58% were at least somewhat satisfied); percentage of needs rated as unmet/partially met ranged from 48% to 60%
(Man et al., 2002)	Individual Family Member	None	Cross sectional; instrument development	Group 1: 221 mixed group of family members of persons with TBI; Group 2: 65 rehab professionals	Family Empowerment Questionnaire	Differences noted between rehab professionals and Hong Kong Chinese family members on 4 empowerment factors may have clinical implications for care provision.
(Marsh et al., 1998a)	Individual caregiver	None	Cross-sectional at 6-months post-injury	N=69 primary caregiver of adult with TBI	Beck Depression Inventory; Trait Anxiety Inventory; Head Injury Behavior Rating Scale; Caregiving Questionnaire	Anxiety, depression, and social adjustment problems present in 1/3 of caregivers at 6 months. Social isolation and negative emotions of TBI survivor associated with most distress while behavioral problems have most impact overall on caregiver function at 6 months.
(Marsh et al., 1998b)	Individual caregiver	None	Cross-sectional at 1-year post injury	N=69 primary caregiver of adult with TBI	See (Marsh 1998a) for instruments	Number of behavioral problems and physical impairment of the TBI survivor as well as social isolation were strongest predictors of burden. Caregiver distress resulted from TBI survivor emotional difficulties such as anger. Most impact was loss of personal time on part of caregiver.
(Marsh et al., 2002)	Individual caregiver	None	Longitudinal (combined prior data 6 mo/1 yr)	N=52 primary caregiver of adult with TBI	See (Marsh 1998a) for instruments	Evidence of adaptation over time.
(Marwit et al. 2006)	Primary caregiver	None	Cross sectional; instrument validation	N=28 caregivers of persons with acquired BI; (spouse/partner, adult child, relative or friend)	Marwit-Meuser Caregiver Grief Inventory; Caregiver well- being scale-basic needs; Caregiver Strain Index; Perceived Social Support Questionnaire; Beck Depression Inventory	No relationship found between ABI level of function, years since injury, and measures of caregiver grief, depression, wellbeing, strain or perceived social support. Small sample size did not allow factor analysis of tool in this new population.
(McPherson et al. 2000)	Individual caregiver	None	Cross-sectional (15–18 months post-discharge from inpatient rehabilitation)	N=70 caregivers of survivors of acquired brain injury (TBI 60%). Mixed population of spouses, parents, others. Age range of respondents 14– 76 years.	Short Form-36; Caregiver Strain Index	Strain levels of TBI caregivers higher than for other types of acquired BI, but this not significant. Spouses reported worse perceived health on the SF- 36 in comparison to parent caregivers.
Morris (2001)	Primary caregiver	None	Pre/post test design; evaluate effectiveness of informational booklet on TBI to caregivers	N=34 primary caregivers of TBI survivors grouped into early (2–9 mo) or late (>1 yr) following injury	General Health Questionnaire; Symptom Checklist; Hospital Anxiety and Depression Scale; Questionnaire about booklet	Booklet would have been most useful if provided at discharge. No significant change in anxiety, depression or symptom scores.
(Murray et al., 2006)	Individual Family members/caregivers	None	Cross-sectional (range 5 months-14.5 years post- injury	N=66 caregivers of person with acquired brain injury ; mix of parents, spouse, others	Family Needs Questionnaire; Content analysis of open-ended questions	Acquired brain injury includes traumatic, chronic or pathological injury. About one half of caregivers reported partially or unmet needs.
(Nabors et al. 2001)	Individual caregiver	None	Cross sectional at least 1 year post-injury (range 12–52 months)	(N= 45) 24 African American and 21 White caregivers of TBI survivors at least 1-year post-injury. Age range 21–73; defined as FM directly involved in care upon d/c from rehab	Head Injury Family Interview; Family Needs Questionnaire (FNQ); Family Assessment Device; Personality Assessment Inventory	The younger the caregiver the fewer the needs that were met. African American and White caregivers exhibited similar patterns of adjustment after TBI.
(Rapport et al. 2006)	Individual caregiver	None	Cross sectional at 1, 2 or 5 years post- injury	N=249 caregivers of TBI survivors; mix of parents, spouses, others ranged	Not listed	Prevalence of depression 17%, anxiety 16%, somatization 21%, and low satisfaction with life 23%; but more than 40% of caregivers who exceeded clinical cutoffs did not receive treatment. House of worship was primary source of support.
(Perlesz et al. 2000)	Individual with TBI and primary, secondary and tertiary caregivers	None	Cross sectional	79 Families (65 TBI survivors; 72 primary caregivers; 43 secondary carers; 22 tertiary) (age at time of injury ranged 16 to >66 yoa)	Family Satisfaction Scale; Beck Depression Inventory; State Anxiety Inventory; POMS; Head Injury Family Interview	Gender differences seen among primary caregivers; wives are at greatest risk of poor psychological risk and report much more responsibility than prior to injury.
(Ponsford et al. 2003)	Dyad (TBI survivor and a close family member)	None	Cross sectional at 2, 3 or 5 years post- injury	N= 143 TBI survivors and a “close family member” (65% brought FM)	Family Assessment Device (FAD); Leeds Scales for Self-Assessment of Anxiety and Depression; Structured Outcome Questionnaire; Sickness Impact Profile	Level of family adjustment in those participating was reasonably healthy. Stepwise regression analysis examining strongest predictors of functioning were the number of cognitive, behavioural and emotional changes reported in the injured relative
(Sander et al., 2007)	Individual Caregiver	None	Nested Cross- sectional 1 year post-injury	N=195 caregivers. Blacks and Hispanics grouped together due to small sample size for comparison to Whites.	Ways of Coping Questionnaire; Caregiver Appraisal Scale; Brief Symptom Inventory	Implied model: cultural context of care. Blacks/Hispanic caregivers reported more distress than whites in contrast to prior studies. Limited generalizability due to grouping of racial and ethnic categories acknowledged.
(Struchen et al. 2002)	Individual Caregivers	Stress (Lazarus & Folkman)- Appraisal	Cross sectional; instrument validation	N=241 (149 in TBI model systems; 92 in rehab)	Caregiver Appraisal Scale; Subjective Burden Scale; Objective Burden Questionnaire; General Health Questionnaire	Factor analysis yielded similar structure to that for caregivers of frail older adults (Lawton et al., 1989). Caregiving mastery had poor internal consistency. Physical burden, caregiver relationship satisfaction and caregiver ideology performed well.
(Watanabe et al. 2001)	Individual Family Member	None	Cross sectional	(N=30) 18 British family members and 12 Japanese Family Members of TBI Survivors living in same household and providing most care in Japan	Family experience and attitudes questionnaire; Stress scale; Family problems and solutions questionnaire; Family needs questionnaire (FNQ)	Implied model: Cultural context of care. Needs not different between the 2 groups. to some extent, Japanese FM were significantly worried about opinions of non- household relatives and others. British FMwho reported social embarrassment appeared to experience higher levels of mental and physical stress
(Wells et al. 2005)	Dyad (TBI survivor and primary caregiver)	None	Cross sectional (mean time since injury 1– 40 years)	72 pairs of adults; (caregivers were 52 spouses, 17 parents, 1 grandparent, 1 cousin)	Brock Adaptive Functioning Questionnaire ; Zarit Caregiving Stress Questionnaire Short Form; Questionnaire on Resources and Stress; Symptom Checklist (SCL-90); Satisfaction with Life; Family Coping Strategies (F-Copes)	Wide variation in PTA; length of unconsciousness. Positive caregiving feelings>Negative. Loss of income following injury related to more negative feelings. No behavioral change on part of TBI patient added to predicting positive care feelings. Recruited 351; so sample bias possible.