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Long-Term Life Quality and Family Needs After Traumatic Brain Injury

Kolakowsky-Hayner, Stephanie A. MA; Miner, K. Dawn PhD; Kreutzer, Jeffrey S. PhD, ABPP

The Journal of Head Trauma Rehabilitation: August 2001 - Volume 16 - Issue 4 - p 374–385
Original Article

Objectives: This investigation assessed the life quality and long-term family needs of caregivers of persons with brain injury.

Design: Respondents completed the Virginia Traumatic Brain Injury Family Needs Assessment Survey.

Setting: Community-based sample.

Participants: Respondents included 57 caregivers of persons with traumatic brain injury who were at least 4 years after injury and who resided in Virginia. Respondents ranged in age from 19 to 82 years and were primarily women and Caucasian.

Outcome Measures: The Family Needs Questionnaire (FNQ) and quality of life questions.

Results: Results indicate diminished life quality after injury. With regard to family needs, Health Information (51.43%) and Involvement with Care (47.93%) needs were most often rated as met. Instrumental Support (31.52%) and Professional Support (28.38%) needs were most often rated as not met.

Conclusions: Family needs and support systems for those needs change over time. This investigation provides evidence that unmet family needs extend well beyond the acute setting and that caregiver life quality diminishes over time. The importance of appreciating long-term family needs and other life quality issues should not be underestimated.

Clinical Instructor, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Medical College of Virginia Campus, Richmond, Virginia (Kolakowsky-Hayner)

Postdoctoral Fellow, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Medical College of Virginia Campus, Richmond, Virginia (Miner)

Professor and Director, Rehabilitation Psychology and Neuropsychology, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Medical College of Virginia Campus, Richmond, Virginia (Kreutzer)

Correspondence and reprint requests to: Stephanie A. Kolakowsky-Hayner, MA, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Medical College of Virginia Campus, 1200 East Broad Street, Room 3–102, Box 980542, Richmond, VA 23298-0542. Phone 804-828-3703, Fax 804-828-2378. email: sakolako@hsc.vcu.edu.

Supported in part by (#MCJ-51TB27–01–0) from the Department of Health and Human Services (DHHS) Health Resources and Services Administration, Maternal and Child Health Bureau. The contents are the sole responsibility of the authors and do not necessarily represent the official views of DHHS. Additional support was provided in part by (#H133P2006) from the National Institute on Disability and Rehabilitation Research.

© 2001 Lippincott Williams & Wilkins, Inc.