Why should physiatrists involve family in treatment?
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Family members are the primary source of support for persons with traumatic brain injury (TBI) regarding:
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Physical assistance (e.g., transfers, basic and instrumental activities of daily living)
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Ongoing monitoring and supervision of impact of cognitive deficits on activities (e.g., medication management, medical appointment tracking, decision-making accuracy)
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Monitoring emotional status (e.g., symptoms of depression and anxiety)
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Assistance with implementing treatment team recommendations (e.g., physical and occupational therapy exercises, safety precautions)
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Helping with integration into the community and social and leisure activities
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There is a bidirectional relationship between caregiver and patient health.
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Patients’ psychosocial functioning and well-being affect family caregivers’ health.
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Caregivers’ psychosocial functioning and well-being affect patient rehabilitation outcomes and community participation.
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How does traumatic brain injury affect family members?
Although there is variability in individual response to caring for a person with TBI, research has documented frequent negative impacts, including , :
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Decreased physical health
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Increased and often long-lasting emotional distress, including depression and anxiety
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Increased financial strain and higher likelihood of leaving the labor force
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Increased family strain (e.g., decreased communication, increased marital strain)
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Disruption of family roles
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Inattention to their own physical and mental health needs
What do family caregivers need?
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Clear, honest information about the medical status and needs of the person with injury in language they can understand
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Education on physical, cognitive, emotional, and behavioral changes anticipated in the person with injury
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Information on resources to help with daily needs (e.g., obtaining needed outpatient treatment, getting financial assistance)
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Information on how to get emotional support (e.g., caregiver support groups, Brain Injury Association of America)
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Referrals for services to help them adjust to the caregiving role and their own emotions, if needed (e.g., individual counseling/psychotherapy, family therapy)
What can physiatrists do to help family members?
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Involve them in treatment planning, goal setting, and decision making.
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Explain things to them in clear language—avoid medical jargon.
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Be familiar with referral sources that can help them adjust, such as psychologists/neuropsychologists, social workers, and nurse educators.
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Be familiar with differing intervention needs based on different levels of family distress ( Table 46.1 ).
TABLE 46.1
Recommendations for Family Interventions Based on Distress Level
Nature of Family Distress
General Level of Intervention
Family functioning well before injury but experiencing normal distress related to injury.
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Education about traumatic brain injury (TBI)
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Assistance in beginning to consider the longer term consequences
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Reinforcement of existing coping strategies
Mild preexisting disturbances in family dynamics appear to be exacerbating normal reaction to TBI-related stress.
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Education about TBI
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Assistance in developing longer term contingency plans
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Intensive counseling and assistance in developing mutually supportive coping skills
Long-standing and pathological family dysfunction is an obstacle to coping with injury and to the rehabilitation process.
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Standard TBI education, support, and long-term planning
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Additional intensive family therapy
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