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Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

The impact of brain injury on family dynamics and functioning has been the subject of much research over the last three decades. Coping with the impact of acquired brain injury (ABI) is one of the most difficult tasks that can confront a family (Florian, Katz, & Lahav, 1989) and family members experience a wide range of needs as the injured person progresses through rehabilitation (Brooks, 1991).

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Several early studies (Panting & Merry, 1972; Thomsen, 1972; Oddy, Humphrey, & Uttley, 1978) highlighted the emotional difficulties and stresses that family members experience in post-injury adjustment. Much familial distress was attributed to behavioral, cognitive, and personality changes in the brain-injured family member. Other researchers (Oddy, & Humphrey, 1980; McKinlay, et al. 1981; Thomsen, 1984) suggested a strong relationship between the severity of brain injury and the degree of emotional strain and disturbance experienced by the family in post-injury adjustment.

The Brooks, et al. (1986) study on the impact of brain injury from the viewpoint of relatives showed that relatives were under significantly greater stress at five years than at one year post-injury. The area that most caused stress was `disturbed behavior'. At five years post-injury, relatives reported experiencing increases in the incidence of disturbing/challenging behaviors (violence, verbal aggression, inappropriate social behaviors, dependency etc.) and a reduced ability to cope with the brain injured family member compared with their experience at one year post-injury.

This pattern of increasing stress and strain (as time since injury progresses) experienced by family members caring for a relative who has a brain injury seems different as compared to family adjustment patterns relating to other acquired disabilities. Florian et al.'s (1989) study of family adjustment in which families experienced either a spinal cord injury (SCI) or an acquired brain injury (ABI) to one of its members indicated that family members coping with SCI had better long-term adjustment outcomes than families coping with ABI. Florian et al. found the severity of injury and the magnitude of behavioral and personality change to be the best predictor of long-term family stress and strain, confirming earlier research (Oddy, & Humphrey, 1980; McKinlay, et al., 1981; Thomsen, 1984; Brooks et al., 1986) that linked the degree of severity of the brain injury, and subsequent personality and cognitive changes with the degree of psychological distress, burden and family dysfunction experienced among family members post injury.

In Australia, over 148,800 individuals have an ABI and receive support from a family member, such as a spouse, parent, child, or other relative (Australian Bureau of Statistics, 1993; Yeatman, 1996). Brooks, et al.'s. (1986) finding that family stress and burden increases over time suggests that family members `needs' and the degree to which they are met or not met may also change over time. In order to prevent family breakdown and caregiver burnout, assure timely service provision and utilize limited resources effectively, it is vital that the needs of families coping with brain injury be identified.

Family Needs Following Brain Injury

Maus-Clum and Ryan, (1981) Mathias, (1984), and Campbell (1988) have explored the needs of family members during adjustment to a relative's acquired brain injury. Maus-Clum and Ryan (1981) found that needs for accurate and kind communication with health professionals about both short and long term recovery, financial counseling, emotional support, and information about community resources were ranked high by relatives.

Mathias (1984) administered an adapted general trauma questionnaire to family members of critically ill relatives during acute hospitalization. The time at which the brain injured family members were interviewed post-injury was between approximately 0 and 4 months post-trauma. The key areas of concern for families related to the availability of professional and medical supports. In particular, the need for accurate information and communication with caring medical staff was ranked highly.

Campbell (1988) investigated the needs of relatives who participated in a brain injury support group and identified needs for information about community and financial resources, emotional support, and respite and recreation options. Overall, Campbell's research reinforces the premise that families coping with brain injury have specific needs and experience severe stress and strain.

While the Maus-Clum and Ryan (1981) and Campbell (1988) studies seem to suggest some consensus about the needs family members experience in the post acute/long-term rehabilitation process, neither Maus-Clum and Ryan (1981) nor Campbell (1988) provided any information regarding needs and time since onset of injury. The nature of the relationship between types of family needs identified and time since/post-injury (beyond acute hospitalization stage) remains unclear.

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Changing Family Needs After Brain Injury

Journal of Rehabilitation, Oct-Dec, 1998 by Peter Stebbins, Paul Leung

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