FAMILY INVOLVEMENT IN BRAIN INJURY REHABILITATION

Families and professionals generally agree that families should become involved in the rehabilitation process of traumatic brain injury patients. Unfortunately, family involvement tends to be limited by logistic, attitudinal, and other barriers, and both families and professionals often become frustrated, confused, and angry at the discrepancy between what is considered ideal involvement versus the reality of their involvement.

A Family Involvement Questionnaire was developed to examine which specific kinds of involvement were perceived as being desirable by families and professionals. The purpose of the questionnaire was to assess perceptions about the appropriateness of various types of family involvement in the TBI rehabilitation process and to explore the perceptual differences between rehabilitation professionals and family members regarding family member involvement in TBI rehabilitation. Participants were asked to respond on a 5-point scale to 60 items assessing the extent to which they agreed or disagreed with a statement. The items evaluated 6 general categories: opportunities for family input; availability of information and education regarding TBI; opportunities for family involvement in treatment; opportunities for family advocacy; opportunities for family contact with TBI patients; and availability of counseling and support services for family members.

In the study, rehabilitation professionals and family members agreed on the importance of sharing general information about TBI patients. However, although the two groups generally agreed that families should be involved in patient care, family members felt more strongly than rehabilitation professionals about the need to participate directly in the treatment planning and ongoing rehabilitation of the TBI patients, and about their rights to advocate for, and have frequent contacts with, the patient. Conversely, rehabilitation professionals perceived family and personal counseling as a more appropriate involvement than did family members.

In addition, family members desired immediate notification of changes in the patient's status and therapy schedules (including minor health and behavioral problems). They also felt entitled to routine copies of progress notes, copies of all test results, and to be active participants in every meeting at which the patient's progress is discussed. Professionals overwhelmingly felt that it was inappropriate for families to receive copies of daily notes, and that they would feel constrained about what they included in a written note if the family expected copies of every note written. They also felt that reviewing the results of every specific test was time-consuming, unnecessary, or logistically impossible, and that is was unreasonable for families to hold them to rigid therapy schedules.

Finally, families generally felt strongly about the ability to have unrestricted access to the patient, while professionals felt strongly that some restrictions were appropriate. especially if the visit was unannounced. Professionals also placed much more importance on the provision of counseling and support for family members, including on marital and sexual issues.

The development of the Family involvement Questionnaire not only aided in determining perceptions about family involvement needs in the rehabilitation of TBI patients, but also pointed out the discrepancies and perceptual differences between professionals and family members on the appropriateness of family involvement in different areas of the patient's care. It is suggested that the next step would be to develop strategies to maximize opportunities for family involvement while minimizing conflict between the two groups.

For more information: Shaw, L.R.; Chan, F; and Lam, C.S. Development and Application of the Family Involvement Questionnaire in Brain Injury Rehabilitation. Brain Injury, 1997. Vol. 11, No.3, 219-231.

Lisa Palen Hu, M.D.