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Effects in the Military of Brain Injury on Families & Caregivers
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I. What Changes after Head Injury? II. Relationship Changes
III. Effects on Caregivers (coping cognitive burden)
IV. Research on Family Needs Post-TBI
V. Implications for Interventions
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II. Relationship Changes
III. Effects on Caregivers (coping cognitive burden)
IV. Research on Family Needs Post-TBI
V. Implications for Interventions
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I. I.
II. Relationship Changes
III. Effects on Caregivers (coping cognitive burden)
IV. Research on Family Needs Post-TBI
V. Implications for Interventions
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I.I.
II. Relationship Changes
III. Effects on Caregivers (Coping & Cognitive Burden)
IV. Research on Family Needs Post-TBI
V. Implications for Interventions
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II. Relationship Changes
III. Effects on Caregivers (coping cognitive burden)
IV. Research on Family Needs Post-TBI
V. Implications for Interventions
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I. What changes after TBI? Improved survival rates >>>The double-edged sword of rehabilitative realityShared responsibility becomes primary responsibilityCommunity reintegration runs a far distant second place
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I. What changes after TBI? Improved survival ratesThe double-edged sword of rehabilitative realityShared responsibility becomes primary responsibilityCommunity reintegration runs a far distant second place
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I. What changes after TBI? Improved survival ratesThe double-edged sword of rehabilitative realityShared responsibility becomes primary responsibilityCommunity reintegration runs a far distant second place
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I. What changes after TBI? Improved survival ratesThe double-edged sword of rehabilitative realityShared responsibility becomes primary responsibilityCommunity reintegration runs a far distant second place
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I. What changes after TBI? Patient personality changes >>>
Family burden greater in TBI than ortho
Nearly twice the rate of family dysfunction (Wade et al., 1998)
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Frontal LobeThe frontal lobe is the area of the brain responsible for higher cognitive functions.
These include:
• Problem solving• Spontaneity• Memory• Language• Motivation• Judgment• Impulse control• Social and sexual behavior.
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.
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I. What changes after TBI? Patient personality changes
Family burden greater in TBI than ortho
Nearly twice the rate of family dysfunction (Wade et al., 1998)
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II. Relationship Changes Caregiver’s emotional cornucopia
“Chronic pall on their lives” (Lezak, 1978)
Chronic effects of caregiver burden (Brooks et all, 1986)
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Cognitive Burden at 5 years post injury (Brooks et al, 1986)
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II. Relationship Changes FAMILIES:> 1/3 impacted at “moderate level”
30% - lessened $; approx 3/8 housing change16% a worsening of adult relationships in the family (Montegomery et al, 2002)
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II. Relationship Changes PEERS/ SIBLINGS:2/3 siblings were adversely effected (Montegomery et al, 2002)
More so in TBI than ortho (Swift et al, 2003)
Gender differences in its expression (Perlesz, 2000)
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II. Relationship Changes PARENTS & SPOUSES:Veteran spouses > in “the “man’s role” and < in child care
“don’t have a husband”
1/5 threatened with physical violence
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III. Effects on CaregiversLong Term Family Functioning 3.5 yrs post-TBI (Douglas & Spellacy, 1996)
Variables :demographics Injury-relatedPatient- relatedCaregiver Variables
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III. Effects on CaregiversLong Term Family Functioning 3.5 yrs post-TBI (Douglas & Spellacy, 1996)
largest variance (55%) accounted for by caregiver depression & social support
Stress, anxiety, burden & alienation
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III. Effects on Caregivers
Primary Caregivers Psychological Status in Family Functioning After TBI (Kruetzer et. al 1994)
Measures: BSI & FAD
Results: 50% elevated stress, 33% anxiety, 25% depression, elevations on Paranoia & psychoticism (Burden & alienation)
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III. Effects on Caregivers (Wells et al, 2005)
lack of empathy
Memory disturbance?
Impaired impulse control
Neuropsychological predictions?
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III. Coping Responses Denial in acute phase
Common FantasiesVerbal RefusalInappropriate Responses (Romano)
medication use
Acceptance yields better functioning
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III. Coping Responses
Acute Impact of TBI on Family Structure and Coping Responses (Curtiss et al, 2000)
Examined changes in family structure post-TBI
Questionnaires 6 month pre and post
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III. Coping Responses
Cohesion & Adaptability
Balanced & Extreme families
Who adapts the best?
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III. Coping ResponsesParticipants:
Spouses of 21 active duty military with non-penetrating TBI (DVBIP pts)
Measures:Faces II (30 Likert responses)Coping Response Inventory (58 Likert)
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III. Coping ResponsesResults:Significant family change in coping (relative to coping of prior stressors)
Balanced families changed the most (70%)
At 1 yr, they were still functioning the best
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III. Coping Responses Balanced: used similar coping but
reduced emotion & reward behavior…may need supportive tx to allow painful affect and acknowledgement of loss
Diffs in family structure coping may help tailor diff needs and tx responses
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IV. Research on Family Needs Post-TBI
Predicting Family Needs After Brain Injury: Implications for Intervention (Serio et al 1995)
N = 180; spouses (43%) parents (36%)
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Scale Met Needs Unmet Diff
Medical Info 63 14 49
Emotional Support 42 30 12
Instrumental Support
47 19 28
Professional Support
46 26 20
Support Network 52 41 11
Total 55 19 46
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Results/Discussion (SERIO ET AL, 1995)
Different needs for caregivers
Spouses with more caring time had fewer needs met (nonsignificant for parents)
Negative relationship between pts problems and needs met (> = <)
Neuropsychological testing not predictive
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• Outcome predictors vary
• Relatives rating are a good predictor (over more likely thought variables)
• Time since injury and LOC were not strong predictors
• Numerous variables must be considered including coping style, motivation, pre-injury factors
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IV. Research on Family Needs Post-TBIResource info, future care, effects of injury Campbell, 1988Clear explanations, realistic expectations, emotional support Mauss & Ryan, 1981Honesty, close communication, medical information Mathias (1984) in Kreutzer
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IV. Research on Family Needs Post-TBIFamily Needs After Brain Injury (Kreutzer et al, 1994)
Method
Instruments
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IV. Research on Family Needs Post-TBI
RESULTS:
Similar findings in terms of needs wanted BUT….want didn’t they perceive they needed?
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Table 3: 10 Needs Most Frequently Rated as Not Important
• To have help keeping the house 32%• To be reassured that it is usual to have strong negative
feelings about the patient 19%• To have help from other members in taking care of the
patient 19%• To give my opinions daily to others involved in patient’s
care, rehab or education 18%• To spend time with my friends 18%
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•
•To have my spouse understand how difficult it is for me 16%•To have other family members understand how difficult it is for me 15%•To be encouraged to ask others to help me 15%•To discuss my feelings about the patient with someone who has gone through the same experience 15%•To have help getting over my doubts and fears about the future 13%
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IV. Research on Family Needs Post-TBI
The highest 10 ranked endorsed by less than 20%....individual differences !
Was a greater set of needs for those caregivers of male patients
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IV. Research on Family Needs Post-TBI
INFORMATION UNCERTAINTIES
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IV. Research on Family Needs Post-TBI• RELATIONSHIPS
– Between the pt and the team
– Family members and the team
– Relationships within the team
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QUALITATIVE STATEMENTS INFORMATION
Patient: “She is awkward, she didn’t know how to tell me”.
Family member: “We didn’t get much information, we had to ask them for more”.
Physician: “You don’t want to give the family too big a blow, it’s a big pill to swallow”
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• UNCERTAINTY• Patient: “I had the feeling they were hiding
something from me”.• Family member: “They want to protect
themselves… the more they say the more they leave themselves open to making a mistake… the less you say the better”.
• Physician: “You can’t help them about the uncertainty because we share the same doubts”.
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• INDIVIDUAL CARE-TEAM RELATIONSHIP
• Professional: “You’re a cardiologist, you are the heart, for another one, you are the foot, for another one you the brain. It is a time when the patient is treated as an object”.
• Physician: “They get the impression that we are controlling them, that we don’t have confidence in them”.
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FAMILY CARE-TEAM RELATIONSHIP
• Family Member: “In intensive care, I found that all the energy was directed at the patients, and that’s understandable. But you feel brushed aside”.
• Family Member: “we were told “ we need the relatives” but I had the feeling they weren’t listening to me”
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V.
V. Implications for Ongoing Interventions preventing (a priori) and putting out family “fires”
Assessing which factors are relevant…At what timeWith what family memberTo what extent
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V.
V. Implications for Ongoing Interventions
Encourage and enable social contacts
Social self report measure
Relatives should be encouraged to utilize other resources including advocacy groups, peer support groups and day treatment planning.
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I thank you for your time and for the
services you provide to our men and women in the
military.