Traumatic Brain Injury in Latin America: Developing a Theoretical Model of Family-Based Care Juan Carlos Arango Lasprilla, PhD • Paul B. Perrin, PhD
Traumatic brain injury (TBI) is a leading causes of death and disability around the world.1 In particular, Latin America has the highest incidence of TBI due to road traffic injuries and violence, and the second highest rates for short-term intracranial injury due to violence.2,3 In many Latin American countries, violence is a leading cause of death.4 In Colombia, TBI prevalence is 6.4 (95% CI: 5.0 to 7.8) per 1,000 people,5 due heavily to intentional injuries from hostile guerillas and landmine explosions.6 In Mexico, TBI is the third leading cause of death, and injuries are caused predominantly by motor vehicle accidents.7 Estimates suggest there are approximately 909 new TBI cases per 100,000 people in Latin American countries.8 The TBI mortality rate in Latin America overall is 75.5 per 100,000 inhabitants, as compared to 56.8 per 100,000 in the United States.9,10 The burden of TBI disproportionally affects low- and middle-income (LMIC) countries that have a higher prevalence of risk factors but also less developed health and rehabilitation systems to deal with associated outcomes. More than 90% of deaths caused by TBI occur in LMICs are due to risk factors such as living below the poverty line, residing in a conflict zone,11 lack of prevention measures, and underresourced health systems.12
Family Needs After TBI Despite the high death rates after TBI in Latin America, TBI is increasingly considered a chronic health condition13. People with TBI experience long-term symptoms across cognitive, somatic, affective, behavioral, and motor domains13. Recovery time is extremely variable, and often symptoms remain many years after injury14. Only 40% of people with TBI return to work within two years postinjury15, and more severe symptoms are associated with reduced employment16. The responsibility for TBI symptom management often falls on family members who become caregivers, and a large proportion of family caregivers devote over 40-50 hours a week to TBI symptom management17. Families affected by TBI experience myriad unmet emotional, instrumental, and professional support needs regarding symptom management18, and research in Latin America has shown these high rates of unmet needs are closely associated with caregiver mental health problems19. Family members are often inexperienced in caregiving and symptom management, and physical symptoms in individuals with TBI in Latin America are associated with greater family household needs, and emotional symptoms with greater family informational needs20. It is not surprising then, that this transition and a lack of services or familybased coping strategies can lead to stress on the family system21.
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Research on the psychosocial impact of family caregiving for an individual with TBI in Latin America has shown that family TBI caregivers in Mexico report poorer health-related quality of life than healthy controls across various domains of mental and general health.22 In Colombia, the majority of family caregivers studied reported some level of depression, and about half reported being overwhelmed by their caretaking responsibilities.23 Further, TBI caregivers in Colombia report multiple important needs, especially the needs for health information, professional support, and involvement with care.18 Though these needs have been similarly rated as important by United States TBI caregivers, they are more likely to be unmet for caregivers in Latin America.18 Caregivers with high burden tend to care for TBI patients with poorer objective neuropsychological functioning.24 As these studies show, the incidence of TBI is extremely high in this region, yet there are few—if any—comprehensive TBI rehabilitation centers; the majority of patients are discharged directly home, and family members shoulder the burden of care.22 Latin America is comprised of many LMICs, and about 36% of the region’s population lives in poverty.25 Despite these risk factors, rehabilitation services that include family caregivers may maximize cultural strengths, such as a strong sense of familism.24
TBI Primary Caregiver Interventions The dominant paradigm in TBI intervention research both in Latin America and globally lacks a theoretical foundation for the involvement of all family members and is based solely on providing services to the patient, or at best, the primary caregiver26-39. The assumption is that one individual provides the majority of care, and the rest of the family is ignored in intervention research. Caregiver interventions tend to provide psychoeducation30, stress management strategies31, techniques to manage cognitive or behavioral symptoms in the individual with TBI32, and problem-solving skills33. Some use a combination of these approaches34. In general, these interventions have been shown to increase caregiver problem-solving skills33, reduce burden31, and decrease anxiety30 and depression33. Psychoeducational programs alone are less effective for improving caregiver outcomes32. However, the impact of interventions on the family, on symptom management, or on TBI patient quality of life has not been rigorously studied.
