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.
CONSEQUENCES OF TRAUMATIC brain injury (TBI) have been under investigation for several decades. The earliest research focused on persons with TBI, but gradually investigations considered the impact on family members. Chronic neurobehavioral and psychosocial difficulties of the patient after brain injury have been well documented. 1,2 Typically, only short-term professional assistance is available to patients and families, leaving family members to care for the long-term needs of the person with brain injury. 3,4 Without adequate training and professional support for this caregiver role, a variety of problems are commonly reported by family members, including social isolation, 5 changes in family roles, 6–8 depression, anxiety, and increased somatic difficulties. 9–15 In an effort to improve family members' adjustment, identification of family needs and assessment of quality of life after injury have more recently been investigated.
Mauss-Clum and Ryan 13 were among the first investigators to address the needs of family members of persons with neurologic impairments. In their study of 30 wives and mothers of persons with brain injury, the most highly rated needs during the acute phase of rehabilitation were for clear and kind explanations of the patient's condition and discussion of realistic expectations. Additional studies of acute and postacute phases of rehabilitation have identified a variety of family needs, including the need for information about the patient's condition, treatment, and prognosis; information about resources and financial planning; good communication with professionals; emotional support; respite; and maintenance of hope. 6,16–18 The apparent consistency of findings is remarkable given that many studies have been marked by methodologic weaknesses. For example, several studies did not provide information regarding patients' diagnoses or amount of time since injury. In addition, use of very small sample sizes is common (e.g., n < 35), and the psychometric soundness of assessment measures is typically not provided. Therefore, the generalizability of conclusions is often limited.
More recent studies of family needs have focused not only on identifying needs but determining how needs may change over time and the extent to which needs have been met. Several investigators have proposed that relatives report increased stress and unmet needs over time. 19,20 Witol et al 21 assessed 38 family members' needs 6 and 24 months after injury. They concluded that “social support and emotional needs appear to gain salience over time” (p. 186). They also reported that family members are generally satisfied with information and professional support at both early and later postinjury periods. However, family members noted that they had greater difficulty in meeting their emotional and instrumental support needs, with increasing difficulty over time. 21 Moules and Chandler 22 investigated the needs of parent and spouse caregivers of individuals with brain injuries at least 12 months after injury. Their findings are generally consistent with the previous research. Family members identified health information needs as most often met. Emotional support, instrumental support, and professional support needs were rated as met least often. Serio et al 23 proposed that “this trend is likely related to the scarce availability of professional and community assistance after the acute stages of injury” (p. 33).
Although numerous studies have examined quality of life in survivors of TBI, family members' quality of life after a relative's TBI has been all but ignored in the literature. Concepts that seem intuitively related to quality of life have been addressed, such as caregiver stress/distress, 10,24–26 caregiver burden, 1,12,27 and psychosocial difficulties. 5–7,28 However, caregivers' quality of life has received scant attention. In one of the few existing studies, Hickey et al 29 assessed quality of life for caregivers of 40 persons with severe head injuries. Reportedly, quality of life for the caregiver group was poor compared with healthy and chronic disease groups. Koskinen 30 determined that self-reported quality of life, of the closest relatives of patients with head injury, was “rather high,” although level of “strain” was also reportedly high. Recently, Kolakowsky-Hayner et al 31 examined the relationship between family members' quality of life and perceived obstacles to receiving services. There was not a noteworthy relationship between life satisfaction and access to community resources. In fact, most respondents (58.5%) reported being at least somewhat satisfied with their lives. Given such conflicting results, more research in the area of family members' quality of life after a relative's head injury is warranted.
In summary, the effects of severe brain injury linger for many years, and many survivors report permanent problems. During the past decade, much has been learned about the impact of brain injury on family members. Researchers have identified a common set of family needs during the first 2 years after injury. 19–21 Some have suggested that family members' quality of life is impacted by brain injury. Yet, few investigators have examined family members' quality of life, and few have examined family members' needs beyond the first 2 years after injury. This investigation had two primary objectives: (1) to characterize family members' needs more than 4 years after injury; and (2) to examine family members' perceived quality of life before injury and long-term after injury.
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: email@example.com.
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.