STRESS AND CAREGIVER BURDEN FOLLOWING BRAIN INJURY

The negative phenomena associated with caring for victims of illness and injury is defined as caregiver burden. Caregiver burden may be further categorized into objective burden and subjective burden. Objective burden includes changes in the patients personality and behavior which are seen by the caregiver as well as financial strain, changes in the daily routine, changes in living conditions, and changes in social activities. Subjective burden is defined as the caregiver's negative reaction in response to the presence of objective burden.

There are an estimated 120 to 240 cases of closed head injury per 100,000 population each year.

Many studies have looked at objective burden to predict subjective burden and outcome in caregivers of head injury patients. Interestingly, there was no simple relationship found between the severity of head injury, cognitive impairment, or physical impairment and the caregiver's experience. Emotional impairments associated with brain dysfunction however, was consistently associated with subjective burden and negative physical and mental health outcomes for the caregiver. Mood disorders, particularly depression and anxiety, have been reported consistently, and one study showed that 60% of spouse caregivers of head-injured patients experienced distress significant enough to warrant psychotropic medications. Many caregivers feel trapped by their role, isolated from social, or abandoned by other family members. 25% of relatives of patients with closed head injuries reported an illness such as migraine headaches or asthma within the first year following injury.

There is a series of common emotional reactions reported by caregivers; of head injury patients which progress from happiness (to have the family member home) to bewilderment to grief and eventually to emotional disengagement from the situation. Stress tends to result from an individual's reaction to environmental events and that individual's appraisal of the situation. The stress reaction occurs in situations where the demands of the environment exceed an individual's resources. The critical component in the caregiver burden process is whether or not the caregiver perceives the effects of the injury to exceed the caregiver's resources to manage the situation. Perceived stress has consistently predicted negative outcomes for the caregiver.

Coping and social support are extremely important in helping caregivers deal with stressful encounters. Coping refers to cognitive and behavioral efforts to reduce or tolerated the demands created by a stressful transaction. People who use more effective coping strategies experience less negative outcomes. Since caring for head-injury persons is a situation with which few individuals have had previous experience, the presence of coping strategies during the initial encounter may be critical to perceived stress and successful coping with the situation. Ineffective coping has been associated with anxiety, sleeplessness, and other negative outcomes. Unsuccessful coping may result in perceiving the situation as more stressful, and coping resources become more scarce over time. Interpersonal relationships (social supports) also protect individuals against stressful encounters. However, many spouses of head-injured patients have a decreased social support system, because they no longer have a partner with whom to participate in social activities, and many feel their partners to be more of a social handicap than spouses of non-head-injured patients.

Age if the caregiver has also been associated with burden. Younger spouses tend to be more unhappy, perhaps due to "role overload". Women also report more subjective burden and depression, and tend to use more avoidant coping strategies. The previous mental and health history of the caregiver and perceptions of the patient's impairment HAVE NOT been consistently associated with subjective burden.

More information may be found in:

Chwalisz, Kathleen. "Perceived Stress and Caregiver Burden after Brain Injury: A Theoretical Integration." Rehabilitation Psychology, Vol. 37, No. 3, 1992. pp 189-203.

Abstract by Lisa P. Hu, M.D.