Journal of Neuroscience Nursing:
Reflecting on a Self‐Care Process in the Home Setting for Traumatic Brain Injury Survivors
Coyle, Mary K.; Martin, Elisabeth Moy
Questions or comments about this article may be directed to Mary K. Coyle, MS APRN BC, at firstname.lastname@example.org. She is an associate professor at Prince George Community College Department of Nursing, Largo, MD, and a doctoral candidate at The Catholic University of America, School of Nursing, Washington, DC.
Elisabeth Moy Martin, MA RNC, is a clinical research nurse for the Defense and Veterans Brain Injury Center, Henry M. Jackson Foundation, Washington, DC.
An estimated 5.3 million Americans are living with disabilities from traumatic brain injuries. Traumatic brain injury (TBI) can cause a wide range of functional changes affecting thinking, emotions, and behaviors, or a combination of any of these. Reflecting on a self‐care process for patients in TBI home rehabilitation programs becomes critical for nurses who desire to optimize patient functioning. As the young patients' brain plasticity impacts adjustments to deficits and injury, applying the self‐care process in the home setting provides a natural healing environment. As TBI survivors recognize and regulate their own behaviors, application of nursing actions dynamically match this change.
The goal of traumatic brain injury (TBI) rehabilitation is to improve the patient's ability to function at home (Chestnut et al., 1999). Reflecting on a self‐care process for patients in TBI home rehabilitation programs becomes critical for nurses who desire to optimize patient functioning. Each year in the United States an estimated 1.5 million people sustain a traumatic brain injury; 80,000‐90,000 people experience long‐term or lifelong disability associated with a TBI. An estimated 5.3 million people are living with disabilities from TBI (Thurman, Alverson, Dunn, Guerrero, & Sniezek, 1999). Traumatic brain injury can cause a wide range of functional changes affecting thinking or emotions, or a combination of these. With direct medical costs and indirect costs such as lost productivity totaling an estimated $60 billion in the United States in 2000 (Finkelstein, Corso, & Miller, 2006), examining the rehabilitation process is vital.
Self‐care has merit in TBI rehabilitation for several reasons. Home rehabilitation programs for young adults assume that brain plasticity influences the ability to respond to injury naturally with minimal intervention (Salazar et al., 2000). Moreover, time is needed for TBI survivors to recognize and regulate their own behaviors (Ben‐Yishay, Silver, Piasetsky, & Rattock, 1987). The report of the NIH Consensus Development Conference on the Rehabilitation of Persons with Traumatic Brain Injury (Chestnut et al., 1999) recommends that individuals with TBI have appropriate timing of therapeutic interventions. Therefore, providing services to match one's needs, strengths, and capacities, and modifying these services as needs change over time (Chestnut et al.), can be addressed within the self‐care process.
Self‐care is defined as behaviors “engaged in over time, performed by persons in stable or changing environmental settings and within the context of their patterns of daily living” (Orem, 2001, p. 255). In a self‐care process, an individual's engagement in self‐care behaviors is linked with prevention of complications (Cohen, Saylor, Holzemer & Gorenberg, 2000). Within the self‐care process, recognizing and regulating behaviors are learned and performed with intent and within a person's stages of growth, development, health, and environment (Orem, 2001). Self‐care behaviors occur within a context of time sequences (Orem, 1991) and support life and healthy function. Nursing research has shown that self‐care changes over time (Braden, 1992, 1993; Dodd & Dibble, 1993; Kreulen & Braden, 2004). When people perceive “a threat to life or health, they assume responsibility toward themselves” by applying selfcare behaviors (Orem, 2001, p. 53). Therefore, initiating and performing self‐care encourages patients to reach expected clinical outcomes and is applicable to patients recovering from a TBI. This approach is especially relevant as the assessment and prevention of unhealthy behaviors is paramount after TBI. In this article, a home rehabilitation program is viewed retrospectively to illustrate the application of a self‐care process to TBI home rehabilitation. A case scenario is provided to demonstrate components of this dynamic process.
The Home Setting for TBI Survivors
The home rehabilitation program was one component of a randomized controlled trial in the Defense and Veterans Head Injury Program. Its purpose was to compare home versus in‐patient cognitive rehabilitation of military patients with moderate to severe head injury. Inclusion criteria consisted of one or more of the following: participants having a moderate to severe TBI as evidenced by a loss of consciousness with posttraumatic amnesia lasting 24 hours or more or positive findings on magnetic resonance imaging (MRI) or computed tomography (CT) scan. Participants had to be able to give informed consent, be within 90 days of their injury, and could not have had a prior severe TBI. All participants received a multidisciplinary evaluation which included psychiatric, neurological (including laboratory review), and neuropsychological testing and psychosocial, speech, and occupational therapy evaluations (Salazar et al., 2000; Warden et al., 2000). Participants were randomly assigned to either an intensive, standardized 8‐week inhospital cognitive rehabilitation program (n = 67) or a limited home rehabilitation program with weekly telephone support from a psychiatric nurse (n = 53). Results of this trial showed that at 1‐year follow‐up there were no significant differences between the two groups in return to employment or fitness for duty (Salazar et al.). Fitness for duty was defined as physical and emotional competence to perform military duties. A subgroup analysis of participants (n = 75) who were unconscious 1 hour or more after TBI demonstrated a higher fitness‐for‐duty rate in the inhospital program compared with the home program (p < .05; Salazar et al.). This study supports the view that participants who have loss of consciousness less than 1 hour from TBI may do well with home interventions; however, further research is needed (Warden et al.). The home program set expectations of positive adjustments during recovery from TBI using weekly telephonic monitoring by nurses.
Prior to beginning the home program, a nurse met with each participant to discuss his or her treatment and participation in the home program. Once expectations were established with an emphasis placed on return to duty, the participants' home situations were considered; times were also agreed upon for weekly telephone calls. Participants were expected to engage in activities they found meaningful in their lives. Throughout the 8‐week home program, participants received guidance on home activities, as well as weekly telephone calls from the nurse. These calls addressed participants' needs to perform daily interventions of 30‐minute cognitive and physical exercises. Moreover, during the calls, nurses monitored patient safety, assessed unhealthy behaviors, and intervened when necessary.
During the telephone calls, some participants reported postconcussive symptoms of headaches, fatigue, depression, irritability, and memory difficulties. Nurses assessed the degree to which these symptoms (along with anxiety, dysphoria, irritability, and angry outbursts) affected daily functioning and interactions with others. Support was provided with problem solving for those symptoms affecting daily living. Figure 1 describes nursing actions used during telephone calls.
Over time, participants increasingly self‐monitored their behaviors and some participants were able to discuss consequences of behaviors with thoughts and feelings. Addressing family burdens and coping behaviors remains an important area for further assessment and research in the rehabilitation process.
Patient Home Activities
During the telephone calls, nurses asked participants about their daily activities, whether they had self‐administered prescribed medications, and what type of socialization occurred during the time since the last telephone call. The majority of participants reported following the prescribed 30 minutes of daily cognitive (e.g., reading) and physical exercise. Some also participated in community activities (e.g., volunteering as a firefighter). Furthermore, a wide variety of vocational skills was evident, along with engagement in an extensive range of home interests. Specifically, these interests included: home repair, personal fitness, assisting with child rearing, and grocery shopping. Reported activities included auto repair, farm work, home construction, carpentry, electrical work, plumbing, machinery repair, socializing with peers at the fire station, fishing, playing musical instruments, and camping (Warden et al., 2000). Some participants needed encouragement to perform unfamiliar activities, such as cooking or washing dishes, and some young males were not used to shopping, so they were encouraged to try and succeed at a new task (Martin, Coyle, Warden, & Salazar, 2003).
Participants gradually assumed responsibility of themselves and their self‐care behaviors. For instance, families often assisted initially with financial record keeping, with the participant gradually resuming his or her responsibilities independently (Warden et al., 2000). Resumption of responsibilities could be viewed as a fundamental practice to deal with symptoms and illnesses (Dunnell & Cartwright, 1972).
Jim, a 29‐year‐old mechanic, was injured in a car accident in which he suffered a loss of consciousness for 2 hours with posttraumatic amnesia lasting 2 days. His CT scan showed a small contusion in his right frontal lobe. He was married with a 6‐month‐old son.
Nurses monitored his recovery in his home with weekly calls for 2 months, and subsequently on an “as‐needed” basis. A full neurological evaluation was scheduled 6 months after the injury. In addition to his TBI, he had cervical neck strain and two broken ribs. He was given pain medication as needed. In response to the nurse's queries during the initial call, Jim acknowledged difficulty falling asleep at night. He also stated that he could not tolerate his son's crying, had daily headaches (rating 6 on a 1‐10 scale), and was fatigued. He acknowledged drinking “a few beers” at night to “help [him] relax and fall asleep.” Nursing interventions included education, review of sleep hygiene, and recognition of potentially unhealthy behaviors (e.g., drinking alcohol). The interventions were timed so that Jim was able to recognize that drinking alcohol actually contributed to his sleep problems and exacerbated his headaches. They also allowed him to regulate his drinking patterns.
During the next 2 months, the nurse worked with Jim, continuing to review his sleep hygiene, diet, activity levels, pain intensity, and mood (e.g., irritability, anxiety, and depression). For instance, by working with the nurse, Jim was able to see that on the nights he did not sleep well he was more irritable the next day, which resulted in friction with his wife and a lowered tolerance of his son's crying; the crying also worsened his headaches.
Jim was given the option of coming to the clinic and speaking to his physician regarding medications for sleep and headaches. He did so and was prescribed medication he could take on an as‐needed basis; he decided when he would take the medications after reviewing their use with the nurse. He also was encouraged to participate in household chores and to start an exercise program, which began with walking one or two blocks. There were some days he did not exercise because of headaches and fatigue; he perceived this as a setback. Supportive nursing interventions were timed with these occurrences. Eventually, he regulated his own progress, gradually increasing the amount and intensity of his daily exercise and activities around the house. For example, by his eighth week home, he was able to walk 2 miles without difficulty. He also progressed from assisting with laundry to independently mowing the lawn.
When Jim returned to work, he asked for and was granted a graduated work schedule. The first week he worked for 3 hours in the morning and 2 hours in the afternoon. Although he continued to experience fatigue and headaches and did not feel he could resume an 8‐hour workday, by the following week he was confident he would be able to do so within several weeks. The dynamic process of self‐care helped him recognize and regulate his behaviors.
In young patients, the brain's plasticity influences adjustments to deficits and injury which occur over time (Salazar et al., 2000). Rehabilitation recommendations include a formalized process oriented toward rehabilitation in the home setting, which permits individuals to recognize and regulate their own behavior after TBI. Home rehabilitation may build upon patients' resources and strengths, and can be applied economically with telephonic monitoring as a medium for the delivery of nursing actions (Martin & Coyle, 2006).
Orem et al. (2001) define self‐care as one's ability to perform on his or her own behalf in order to maintain healthy functioning. The self‐care process builds on the tradition of nursing with the belief that “whatever the patient can do for himself is better” (Nightingale, 1969). Self‐care and TBI rehabilitation assume changes will occur over time within a trajectory of healing. The self‐care process permits examination of therapeutic windows of change and adjustment after TBI, and can minimize the occurrence of unhealthy behaviors. Thus, a self‐care process after TBI merits further exploration and nursing research.
The views expressed in this article are the authors' and do not reflect the official policy of the Department of the Army, Department of Defense, or U.S. Government.
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