Recovery From a Subarachnoid Hemorrhage

Abstract

This second article of a two-part case study focuses on the experiences of a patient and his spouse (caregiver) when a neurological trauma occurs. It is the personal account when A.B. survived a vertebral artery aneurysm and hemorrhage resulting in a subarachnoid hemorrhage. It is also an in-depth post-trauma account from two speech-language pathologists’ viewpoints (i.e., patient and spouse/caregiver). Present-day persistent difficulties, 5 years post-trauma, are also presented. Therapeutic strategies for managing working memory difficulties, attention issues, and word retrieval issues are given. The spouse’s perspective on managing emotional and caregiver stressors and recommendations based on these personal experiences and the Caregiver Empowerment Scale are provided. Suggestions for patients with neurological trauma returning home are suggested to improve home and social integration. In addition, strategies for caregivers are suggested to reduce stress and improve quality of life.

Keywords

adult age memory neuroscience/brain–behavior relationships case studies methodology research speech-language pathologists (SLPs)

Introduction

This article is the second of a two-part series. The first article is titled “Recovery From a Subarachnoid Hemorrhage: Days 1 Through 22.” This second article focuses on what patients, caregivers, and family members may experience when a neurological trauma such as a subarachnoid hemorrhage (SAH) occurs. It is the personal account of the first and second authors’ perspectives when A.B. survived a vertebral artery aneurysm rupture and resulting SAH. Their account is a unique description and case study from the perspective of a spouse and the patient who are both speech-language pathologists (SLPs) with multiple years of professional experience across various settings. Personal accounts and case studies are an important aspect of evidenced-based practice (American Speech-Language-Hearing Association [ASHA], 2004, 2005; Hoffman, Ireland, Half-Mills, & Flynn, 2013). Hence, insider personal and professional perspectives are provided.

Purpose of This Article

This article presents the patient’s (A.B.) and spouse’s (R.G.B.) perspective on managing the emotional and caregiver stressors associated with an immediate trauma as well as long-term consequences. R.G.B. is the spouse of the patient and provides recommendations to caregivers based on the Caregiver Empowerment Scale (CES; Degeneffe, Chan, Dunlap, Man, & Sung, 2011), the literature, and her personal experiences. Both A.B. and R.G.B. are ASHA-certified and state-licensed SLPs. They have numerous years of experience in medical, clinical, school, and university environments. No other SLPs were involved in A.B.’s rehabilitation.

Patient Perspective

I (A.B.) have worked in private practice in medical settings (e.g., acute care, outpatient, skilled nursing facilities, home health, other adult-medical environments, and university clinics). This added knowledge of medical and neurological complications associated with aneurysms and hemorrhages is one of the unique factors in my personal ability to manage the consequences of an SAH.

I can recall incidents immediately prior to the hemorrhage. However, I can only minimally recall events throughout the first 2 weeks post-trauma, and have better recall of the third week in the hospital and have almost complete recall about the time since I returned home. Although, I was not given the Glasgow Outcome Scale (GOS; Jennett & Bond, 1975), I, most likely, would have scored in the “fair recovery and good recovery” category because no major or moderate disabilities were noted by the neurosurgeon, radiology neuro-interventionist, or my wife. The GOS uses five categories consisting of (a) dead, (b) persistent vegetative, (c) severe disability, (d) moderate disability, and (e) fair recovery and good recovery. Individuals with good recovery may still experience persistent and numerous issues (Berggren, Sidenvall, & Larsson, 2011b; Buchanan, Elias, & Goplen, 2000; Hellawell, Taylor, & Pentland, 1999). For example, even with good recovery or moderate disability (as measured by the GOS), 66% of family members reported moderate to high levels of family burden (Buchanan et al., 2000). Consequently, even minimal impairment issues can greatly affect the family and patient.

I initially experienced anomia (i.e., word finding difficulties). At that time, I did not have any difficulties in recalling the names of family, friends, or colleagues. My word retrieval abilities were self-estimated to be at 85% to 90% accuracy 3 months post-trauma. I still experience some anomia and word retrieval difficulties 5 years post-trauma, but with less frequency. These anomias typically consist of either semantic paraphasias or phonemic paraphasias. At times, I did not realize my error, and my wife would bring it to my attention so that I could address it in future conversations.

I continue to exhibit verbal paraphasias (although less frequently) and tend to reverse noun and adjective orders and sometimes noun phrase nouns and object nouns (e.g., “The ball red” or “The car was in the dog”). A colleague observed these impairments initially in the first 2 years post-trauma, but did not mention them to me until later. These incidents were not a result of my bilingualism (being a Spanish–English speaker) as I did not exhibit any of these difficulties prior to the SAH and had achieved native-like proficiency levels in English. In addition, these types of post-trauma errors occurred in both languages. In the initial months post-trauma, I was not always aware of phonemic, semantic, and verbal anomias. However, after the first year, I became more aware of these incidents and would self-correct. I used the strategies of focusing on the appropriate meaning of what I was trying to say, by repeating the intended word, or by circumlocuting and/or selecting another similar word. Self-corrections increased as I became more aware of my errors during the first 2 years after the SAH.

Memory impairments can persist years after brain injury and are influenced by a number of factors (Dikmen, Temkin, McLean, Wyler, & Machamer, 1987). Dikmen et al. (1987), found that time of injury, the type of memory task employed, and the severity of the injury are all influential determiners of outcomes. Dikmen et al., stated, “However, the effect is not an all-or-none phenomenon” (p. 1617). Therefore, it appears that no exact relationship exists between time since the trauma and/or the type of memory, cognitive, or emotional issues affected. My working memory, particularly word retrieval, was the cognitive and language feature that was most impacted from my trauma. It was and is disconcerting not being able to recall the name of an individual, or recall the name of an object. After my trauma, I noticed improvement and I trusted and believed that this disability would decrease and that I would be functioning near my previous levels.

Cognitive Abilities

While at the hospital, I was continuously asked orientation questions such as my name, birth date, and location. I accurately performed this task within days of my trauma. However, initially following my trauma, I had decreased ability to remember and recall (short-term memory). For example, during teaching class one evening, I returned to my office on three separate times to retrieve forgotten items, that is, the marker for the board, the final teaching evaluations, and the pencils for the teaching evaluations. Therefore, SLPs should note that success in simple tasks may hide higher order and executive function cognitive disabilities (Robinson, Pope, & Mace, 2009).

Attention impairments are common post–brain injury. My attention abilities immediately post-trauma started at a severe level but continued to improve over time.

During the first few days after the trauma, my wife reported that I kept asking what had happened and was asking for details regarding the SAH. She stated that I was not retaining explanations and that I was constantly asking these questions after each nap. Initially, I was unable to read due to attention, visual, and memory issues. Five months post-trauma, I found I could sustain attention to tasks for longer periods of time and process information better than immediately post-trauma. For example, with great effort and no support, I individually wrote a brief newsletter article, completed a research article, and reviewed refereed journal articles 3 months following the trauma. In addition, I was given permission to return to work (i.e., with a reduced workload) approximately 12 weeks after the insertion of the stents and coils. My first semester back to work required an extensive level of concentration for medium level cognitively demanding tasks (e.g., teaching a class that I had taught for many years). This sustained effort continued during the first year post-trauma. Each subsequent year required less effort to sustain attention. I estimate that my attention levels post-trauma were as follows: year 1, 85%; year 2, 90%; year 3, 95%; year 4, 96%; year 5, 98% to 100%. Five years post-trauma, my attention is at or near pre-morbid levels. My attention still suffers under tiredness and duress.

Health-related quality-of-life issues have been noted in individuals 1 year after their initial trauma (Berggren et al., 2011b; Tolen, Bredal, Skogstad, Myhren, & Ekeberg, 2011). Consequently, difficulty functioning can take longer than expected and the types of difficulties encountered can vary accordingly. At times, I experience high levels of stress and feelings of panic. Feelings of panic became overwhelming when I was extremely nauseated or when presenting to large audiences. The support and reassurance of my wife has been and is an instrumental factor in my recovery.

As with spontaneous recovery of individuals with aphasia resulting from a stroke (Brookshire, 2007), it was estimated that most of my cognitive abilities would return within 6 months to 1 year post-trauma (as indicated by my neurosurgeon on a 2-month follow-up visit). My neurosurgeon indicated that most cognitive issues should resolve themselves 2 years post-trauma. My experience has been that it took 4 to 5 years to reach near pre-morbid levels.

Patient Emotions

Transitions after a significant health issue can be extremely stressful. For example, transitioning from the hospital to home increased my anxiety because I would no longer have 24-hr monitors and medical care in the home environment (e.g., what if I needed X medication or Y care?). My most significant concern was the potential for the aneurysm to hemorrhage again (i.e., re-bleed that can result in permanent disabilities or death, Bethel, 2010). Even simple tasks such as walking a certain distance or staying alert a given period of time after my initial transition to home were anxiety producing. My transition back to work was also stressful (e.g., what if I were unable to complete X task or sustain a full day of work?). Without the emotional and psychological assistance from my wife, my transition would have been extended or incomplete.

In addition to cognitive abilities and medical stability, it is critical that health care professionals consider the patient’s emotional state during and after an SAH (Fauvage, Canet, Coppo, Jacquot, & Paye, 2007). Two months after the trauma, my primary care physician reported that I was suffering from post-traumatic stress syndrome. My primary complaints included panic attacks, the inability to sleep, and emotional episodes. My emotional responses increased when I read cards and emails from my family, friends, and colleagues. In addition, the fear associated with dying can affect a patient’s perspective of life. Approximately 30% to 50% of SAHs can end in death (Berggren, Sidenvall, & Larsson, 2011a; Kirkness et al., 2002). The neuro-interventionist physician indicated that in my case, the aneurysm had been sufficiently repaired and that my status would be regularly monitored for any changes. He indicated that given sufficient time, I would gradually adjust back to normal daily living. Anti-anxiety medications were prescribed for the interim. My wife was able to take time off from work for 3 months post-trauma to provide much-needed emotional and physical support during the hospital stay and afterwards in the transition home and back to work. SLPs must realize that even simple challenges may cause anxiety, therefore, understanding and patience is needed.

Recovery

At the time of writing this article, it has been 5 years since my SAH. Initially following my return home, I was physically weak. I spent the first 2 weeks taking two to three naps per day. I, then, became able to stay alert and awake for longer periods of time.

With regard to my ability to walk, initially I was able to walk the length of my house inside. My walks started from 25 yards, to 50 yards, to 100 yards. Currently, I am able to walk a mile twice daily at my normal pace.

The most difficult adjustment was my impatience with the recovery time frame. I wanted to be stronger, walk longer distances, and recover my cognitive abilities quicker. I had to learn to heed the recommendations from my wife and colleague that spending time recouping and recovering early would be most beneficial. In addition, whenever, I or my wife noticed a cognitive lapse (e.g., memory retrieval difficulty, anomia, or paraphasic errors), I became frustrated and needed to accept that these events will occur (Carson & Langer, 2006). Visits from my adult children and other family members during this time eased my re-adjustment period. As I was still physically weak and sleeping frequently, I did not take other visitors.

My episodes of being unable to recall the names of individuals or objects lessened with each month that passed. My ability to focus seemed to increase approximately 3 months after my SAH. I pushed myself to review a refereed journal manuscript. Although it took longer than prior to the SAH, and I read and reread the manuscript, I was able to complete the task at a satisfactory level. My wife indicated that I was beginning to cognitively process information at my normal rate at 3 to 6 months post-trauma. Consequently, the return to typical work activities was stimulating and cognitively therapeutic (although frustrating at times).

It took approximately 4 to 5 years for me to regain nearly my previous level of functioning. I do not believe that one achieves a full and complete recovery in that some aspects of functioning will always be impacted (Tolen et al., 2011). In my case, it has been similar to other brain injuries (such as traumatic brain injury [TBI]), whereas, memory, attention, and focus have all been affected to some extent. Please see Figure 1 for a magnetic resonance angiogram (MRA) of the treated SAH 6 months post-trauma. Please note that the right vertebral artery shows similar diameter to the left artery (i.e., no narrowing below the site) and no bulging from the former aneurysm. The darkened area indicates the location of the coil and the two stents where the hemorrhage had occurred.

Figure 1.

Treated MRA of the SAH of the right vertebral artery 6 months post-trauma (left and right vertebral arteries).

The Western Aphasia Battery–Revised picture description task (Kertesz, 2006) was administered within 2 days post-trauma by the hospital SLP. Both the SLP and my wife concurred that my recovery did not necessitate the need for formal speech-language therapy. However, because my wife and I are both SLPs, we devised therapeutic strategies to assist with my cognitive and emotional recovery. I, personally, took it upon myself to utilize the following cognitive-language therapy suggestions regularly during my first year of recovery.

Cognitive-Language Therapy Recommendations

Cognitive and language therapy strategies were borrowed from several sources such as non-aphasic TBI (Acerson, 2015; Ylvisaker, Szekeres, & Feeney, 2001), neurogenic communication disorders (Hopper & Bayles, 2001), and other cognitive communication impairments (e.g., working memory disorders; Murray & Chapey, 2001). A.B. took it upon himself to use these strategies as self-therapy as he did not receive conventional therapy. A.B. found these strategies to facilitate his recovery (see Table 1).

Table 1.

Cognitive-Language Therapy Strategies.

Task	Instructions
1. Word naming tasks	Give a word and provide other words that are associated with it (this may include nouns, verbs, and/or adjectives). For example, the therapist says “table” and the client may respond with “chairs, eating, work, dining set, coffee table, etc.” Implicit and episodic memories may be triggered (Ylvisaker, Szekeres, & Feeney, 2001).
2. Reading	Provide low- and high-level reading materials. For example, reading may vary from the newspaper and pleasure reading books to higher level professional articles.
3. Writing	Write informal, formal, low and high-level pieces. For example, the client may write notes and letters and progress to higher level written pieces as concentration improves.
4. Word memory tasks	Separate words into categories; have the client memorize words in the categories; utilize mnemonics. Utilize recognition naming (the target word is given along with two foils), and/or picture description (for more spontaneous naming). For example, the therapist elicits word and category recall. The clinician may keep track of correct information units (CIUs, that is, words that are accurate and informative to the task; Murray & Chapey, 2001).
5. Auditory attention tasks	Have the client listen to a paragraph and answer questions, restate what was said, restate the main points, and restate main items or discussion points.
6. Divided attention tasks	The client should focus on specific details while dismissing erroneous detail. For example, have the client press a key when two shapes are the same color and another key when they are different colors.
7. Working memory and attention tasks	Divide attention between multiple tasks, the client should attend to key information and ignore distractions and notice patterns. Examples include driving a car to conducting a presentation at work.
8. Cognitive speed	The client should be capable of shortening response times, and processing information accurately and quickly. This is similar to spaced-retrieval training (Hopper & Bayles, 2001) where the client is asked to recall information repeatedly and systematically. For example, have the client engage in conversations and increase difficulty levels (i.e., moving from personal information to higher level professional discussions).

Spouse/Caregiver Perspectives and Recommendations

Spouse/Caregiver Perspective: Initial Response

On Thursday evening, my husband had been admitted to the hospital for medical tests to determine the cause of his recurring nausea. I spent each day at the hospital and by Saturday evening the test results had diagnosed gall bladder issues and surgery was scheduled for Monday morning. I was very optimistic that my husband would have his surgery on Monday morning and returned home that afternoon. That was before the phone call from his nurse at 1:00 a.m. on Sunday morning. The nurse stated, “Your husband has taken a turn for the worse!” The nurse went on to explain that the team had “brought him back” and he was currently in serious, but stable condition. She indicated that I needed to come to the hospital immediately. I was confused and in shock because by all accounts my husband was an active, healthy young man with presumably just a non-functioning gall bladder . . . How did that equate to “a turn for the worse”? We had no immediate family in the area, and I knew that I needed to remain calm and in control for my sake and my husband’s well-being.

Once I arrived at the hospital, I was informed that the nurse had found my husband on the floor of his hospital room, barely breathing, and in tachycardia. The intensive care unit (ICU) nurse indicated that a computed tomography (CT) scan had been performed and that the radiologist would be calling soon with the results. Within the hour, the radiologist called to report that A.B. had an SAH with an unknown origin. My shock and fear was amplified by the way the radiologist hesitantly reported the information to me over the phone. The seriousness of the diagnosis was evident in the tentativeness of the message. The exact location of the hemorrhage would need to be determined by follow-up magnetic resonance imaging (MRI) studies as soon as possible. The news provided a combination of resolve (i.e., a diagnosis had been made, he had lived through the initial hemorrhage, he had been medically stabilized), fear (i.e., Can it be repaired in time? Will he continue to hemorrhage resulting in death?), and various other concerns (i.e., Will embolisms form resulting in strokes? Will there be speech, language, cognitive, and mobility issues? What needs to be done to strive for a positive outcome?). So many questions, with no immediate answers. As an SLP, I was all too aware of the potential consequences of an SAH. I now had to remain calm and call our five adult children and family members to inform them of the news.

The two MRI studies located the site of the ruptured aneurysm. This meant that there would now be a plan of action. A.B. was transferred to a larger trauma medical center to insert the stents and coils. A coil was inserted into the aneurysm to prevent further bleeding from the hemorrhage. In addition, two platinum stents were placed due to narrowing and weakening of the vertebral artery. I knew that the success of the procedure was key to my husband’s survival or ability to function as he had before the SAH. As I waited for the radiology neuro-interventionist to complete the procedure, I researched individual case studies of patients with SAHs. Many of the research articles did not report positive patient outcomes. Often the end result was severe disabilities or death. The fear of losing my husband was weighing heavily on my heart. At that point, I read only articles that reported positive patient outcomes to remain optimistic. I read and prayed for the next several hours.

The radiology neuro-interventionist reported that the procedure to place the stents and coils had been a success; however; the next few weeks would be crucial to A.B.’s outcome. During the first several days, I did not leave the hospital. The ICU staff knew that I was an SLP and I was permitted to stay in the ICU to assist with my husband’s needs and continually monitor his status. I watched for any signs of a stroke or other neurological symptoms that would need immediate medical attention. The ability to be near him helped me to cope with the stress of the situation. While A.B. was resting, I spent my time reading articles and research on aneurysms, SAHs, and his medications; attending to our work-related business (both university faculty); filing for Family Medical Leave; and contacting family and friends.

Initially, I had been calling and emailing family and friends continually. With so many individuals to contact, it became difficult to remember what had been reported to each person. I decided it was best to use a blog to keep everyone informed as to A.B.’s status. Just this one decision to use CaringBridge (i.e., a website that offers free webpages to individuals facing various medical conditions, hospitalization, and/or medical treatment) to communicate with others reduced my stress level tremendously. This ability to communicate with many people with one post provided me with more time to focus on my husband’s needs.

Over the next 2 weeks in the ICU, A.B. progressed through the various symptoms and consequences of the SAH with neurological vasospasms, inflammation of the meninges encasing the brain and spinal cord, severe headaches and body pain, cerebral salt wasting, nausea, and ICU delirium. As a spouse, it was difficult and stressful to watch my husband’s evolving health issues and associated symptoms. I remained focused and monitored all aspects of his medical and emotional care. This made me feel useful in a situation where I felt very little control.

On day 11, A.B. became more verbal and alert. These observable behaviors were presumed to be evidence of improvement. Then, he became increasingly agitated and began hallucinating. The neurosurgeon indicated that the behaviors appeared to be ICU delirium and assumed the symptoms would soon improve with rest. However, the hallucinations and rambling speech continued and A.B. became progressively more agitated and violent. A.B. pulled off ICU leads and attempted to pull out his peripherally inserted central catheter (PICC) line. Now along with the hallucinations and verbal rambling, my husband was out-of-control and could potentially injure himself, or others. A male ICU nurse was called to restrain A.B. during these episodes. It was terrifying to see my husband in this state. My thoughts included, “What if these behaviors and symptoms were not completely related to ICU psychosis? What could be the cause?” I spoke with the neurosurgeon by phone and stressed my concerns, indicating how important it was that A.B. recover without significant disabilities. Believing that the cause was ICU delirium, the neurosurgeon prescribed sleeping medication for A.B. in hopes that the symptoms would subside. With my husband sedated and sleeping, I went home to rest after 36 hr of being at my husband’s bedside. At 6:30 a.m. I received a phone call from the ICU nurse. The neurosurgeon had just conducted early rounds and A.B. was still in an altered state of mind, rambling about seeing “Cat Woman.” The nurse indicated that they needed my immediate verbal consent for A.B. to undergo another cerebral angiogram and CT scan to determine what may be causing the continued hallucinations and agitated behavior. The urgency of the request brought back that same level of fear as the initial incident! Within a couple of hours, the test results indicated the good news that there was no evidence of bleeding, stroke, or issues with the stents or coils. It was concluded that ICU delirium, along with vasospasms within the brain, had been causing the continued issues. It was reassuring to have conclusive test results that provided evidence of healing. It felt like a weight had been lifted and provided a much-needed boost to optimism. The anesthesia used to sedate A.B. allowed him to sleep deeply, which also interrupted the cycle of the ICU delirium. Once A.B. awoke, he began to make tremendous strides in returning to a more normal mental state and his health continued to improve.

Soon after, A.B. was moved to the step-down neuro-ICU. The fact that he was moved from the Trauma ICU, was a concrete sign that he was making very good progress in his recovery. I felt very hopeful and positive about the future. A.B. was finally able to undergo the needed gall bladder surgery. After a few more days, A.B. was released from the hospital.

Both A.B. and R.G.B. experienced an exciting and terrifying first day home. We were both very apprehensive about being away from access to immediate medical personnel. All of the “what if” scenarios went through our minds. I knew I had to remain strong, optimistic, and positive to reassure my husband. I needed to remind him that the neurosurgeon believed that there was a good chance that the aneurysm would not re-rupture and that these chances were “slim to none.” Although I had faith, I was trying to convince myself as well.

Spouse/Caregiver Perspective: After Release From the Hospital and Beyond

For the next 3 months, I was able to take time away from work to be a caregiver for my husband. Often spouses or significant others do not have the ability (i.e., financially or responsibility related) to take a leave of absence. This fact can lead to additional stressors for the family (e.g., scheduling caregivers in spouse’s absence, financial concerns; handling work and other responsibilities). In our case, we both had enough sick time and had joined a “sick bank” leave program at our institutions. That allowed us to both take 12 weeks of time through the Family and Medical Leave Act (FMLA; Family and Medical Leave Act of 1993, 2006). These factors provided for our family financially through the first 12 weeks. Although our situation was ideal for maximum financial support, SLPs should remember that this type of support is not always available to all patients and/or caregivers.

Initially, A.B. was not able to assist with any home- or work-related responsibilities. A.B. was instructed by his neurosurgeon and radiology neuro-interventionist to rest, gradually build physical and mental stamina, not to lift heavy items, control his blood pressure, and take all prescribed medications. As a wife and caregiver, I took on the responsibility for making sure everything was done to the level expected under “normal circumstances.” I tried to do everything (i.e., family, housework, yard work, financial, caregiving). I did not account for the stress of the traumatic event that had happened in both of our lives. After 2 months of being a caregiver and taking on the responsibility for all aspects of our lives, I experienced caregiver fatigue. I was so physically and mentally exhausted that it led me to finally break down in tears. After a “cleansing cry,” and some much-needed rest, I was able to continue my caregiving in a way that was healthier for both of us. I realized that I must take care of myself as well.

In the first year, A.B. was very dependent upon me. For A.B., many tasks were not as easy to complete and he would become overwhelmed. A.B. required more wait time to respond to questions or provide comments, that is, he required more time to process information. Tasks that required multiple steps or multiple tasks were difficult for him to complete. He would get overwhelmed. Tasks had to be broken down into smaller steps and only one task at a time facilitated his rehabilitation. It was important to gradually increase the complexity of everyday tasks for him to progress in his recovery. As situations would arise, I encouraged A.B. to push through, one step at a time, until he was successful. For example, A.B. had difficulty with a consulting business issue that needed to be resolved. He did not know where to start and all the steps in reaching the resolution. R.G.B. had to assist with the first step and strongly encourage A.B. to pursue each level through to resolution.

As the past 5 years have progressed, we have adjusted to the “new normal.” A.B. has made great strides and has made a nearly complete recovery at the 5-year mark. Setbacks consisted mostly of emotional difficulties. In the first few months after returning home, A.B. experienced post-traumatic stress disorder (PTSD). The fear of re-occurrences and also the fear of not being able to work compounded this situation. However, R.G.B. and A.B. approached each day with confidence. A.B. knew that these fears would subside and that the PTSD would also diminish. The help from R.G.B. as a spouse and also the support of family, and friends provided encouragement and support. With each day that passed, A.B. readjusted to life and work demands.

A.B.’s determination and willingness to accept the residual differences has made a positive impact on our lives. Accepting residual differences has taken the longest period of adjustment (almost 5 years). We accept, rejoice, and joke about the differences. There could have been a completely different outcome of death or severe disabilities. We are very grateful beyond words and never take life for granted.

Caregiver Implications

It has been well documented that individuals who experience from a stroke, TBI, or other neurocognitive disturbances may continue to exhibit psychosocial and cognitive issues after the initial trauma (Berggren et al., 2011a; Bethel, 2010; Buchanan et al., 2000; Hellawell & Pentland, 2001; Hellawell et al., 1999; Jarvis, 2002; Kirkness et al., 2002; Powell, Kitchen, Heslin, & Greenwood, 2002). These issues may include fear, stress, frustration, anger, disappointment, impatience, among others.

Post-acute rehabilitation may include enhancing cognitive performance, environmental supports, and reducing reported symptoms. Increasing a patient’s resilience, independence, and self-esteem also predicts rehabilitation outcomes for patients with TBI (Sherer et al., 2015). In addition, Sady, Sander, Clark, and Sherer (2010) noted that among those with mild-to-moderate TBI, increased family functioning was associated with home integration.

Home integration and the persistent nature of many of these issues for patient and families necessitates a family-based approach to provided services. In addition, patients with high social support are found to have quicker recovery periods after a neurological trauma than those with low social support (Harding & Lincoln, 2000). Hence, social support is an important prognostic indicator in patients recovering from a neurological trauma. As SLPs, we utilized the following strategies to A.B.’s transitions to home and work. SLPs should target the following goals for the patient and family to facilitate an increased quality of life (Hidecker, Jones, Imig, & Villarruel, 2009):

Reduce the family burden issues;

Reduce the patient dependence levels;

Improve the patient’s ability to cope with everyday and new situations;

Address cognitive-language impairments (e.g., concentration, memory);

Address mood disturbances, emotional issues (e.g., anger, irritability);

Address fatigue, tiredness issues (directly or indirectly);

Address the patient’s passivity issues (note that in A.B.’s situation this resulted from a feeling of being overwhelmed).

Advice for Family Members: Advocate

Because nurses and medical doctors continually rotate (e.g., on weekends), it is important to monitor any changes so that immediate attention can be administered if a crisis occurs. The following suggestions are adopted from Degeneffe et al. (2011) and from the first author’s experience as a caregiver in this case. Degeneffe and colleagues provided a CaCES for caregivers of individuals who survived a TBI. Because, an SAH is a form of brain trauma, the use of the CES applied to SAH is appropriate. Included items were directly taken from the factors of Community Self-Efficacy, Caregiver Self-Efficacy, Personal Self-Efficacy, and Family Function Self-Efficacy (Degeneffe et al., 2011). In addition, some suggestions from personal experience are also included:

Research all aspects of the medical condition to become knowledgeable so that you can assist in making appropriate medical decisions. Research-based, rather than emotionally based, decisions are crucial decisions for maximum recovery.

Designate one to two individuals who are close to the patient to continually stay at the hospital, preferably in the patient’s room. Physicians and nurses continually rotate, therefore, having a constant person monitor progress or decline in condition is essential.

Research all medications prescribed and monitor the patient’s symptoms. Being aware of medication side effects and the patient’s symptoms can provide important ongoing information to medical personnel for appropriate medication decisions.

Use technology to support the caregiver/patient’s needs. Computers, tablets, cell phones, etc. are essential to managing medical-, family-, and work-related communication during the crisis and recovery stages. Designate someone to assist.

Build a family and friends’ support system and accept assistance offered.

Remind families to work with their employers to seek advice regarding medical benefits that could be available to them in a time of medical crisis.

Use of a patient progress reporting website is essential to continually update the patient’s status. The convenience of being able to enter information real time into a web-based blog allows all family and friends to monitor their loved ones progress. It also provides a way to communicate well wishes to the patient and immediate family. An example is CaringBridge, a non-profit organization, located at http://www.caringbridge.org.

Above all, the caregiver(s) must be aware of their physical and emotional needs and limits. Take particular care to maintain personal nourishment and needed rest.

Advice for Family Members: Seek Support

When the patient returns home, the responsibility for caregiving typically shifts to family members (Cameron & Gignac, 2008). As a result, caregivers may report a lower quality of life, burden in caring for the individual with the disability, role changes, family disruption, fatigue, anxiety, depression, loneliness, frustration, and/or financial issues (Kirston & Thomas, 2008; Krevers & Öberg, 2011). Sander, Maestas, Sherer, Malec, and Nakase-Richardson (2012) found that “ . . . there is evidence that family members experience substantial emotional distress and family dysfunction after injury” (p. 843). Consequently, caregivers are also in need of support (Schure et al., 2006). Schure et al. (2006) stated that caregiver intervention should contain (a) a combination of education and counseling, (b) a predetermined number of sessions, (c) a standardized manual, and (d) themes based on the caregivers’ primary problems and concerns. Spousal knowledge of aphasia has been documented to reduce negative consequences of stroke on marriages (Blonder, Langer, Pettigrew, & Garrity, 2007). Sit, Wong, Clinton, Li, and Fong (2004) found that caregivers do not receive sufficient professional advice and feedback with regard to home care skills for individuals with disabilities. Consequently, family-focused intervention scope of practice for SLPs in working families of individuals with disabilities should include (adapted from Ciccia & Threats, 2015) (a) family education on the disability and rehabilitation, (b) changing expectations and supporting successes rather than failures, (c) fostering environments that promote daily participation and interactions, and (d) supporting and encouraging family members to advocate for the individual with the disability. In sum, when SLPs implement the above-mentioned strategies, patients, families, and caregivers can experience better home integration, less caregiver stress, and greater patient–social integration when the caregiver receives sufficient support (Sady et al., 2010; Sander et al., 2012; Schure et al., 2006; Sit et al., 2004; Visser-Meily, van Heugten, Post, Schepers, & Lindeman, 2005).

Conclusion

SLPs must approach patients, caregivers, and family members of those who have experienced an SAH from multiple therapeutic perspectives. Knowledge and experiences of assisting individuals with aphasia and/or TBI will serve as a foundation.

Patients who have suffered an SAH may experience memory, cognitive, and/or language difficulties even when given a positive prognosis (Dikmen et al., 1987; Robinson et al., 2009). Health-related quality issues may also persist after the trauma (Berggren et al., 2011b; Tolen et al., 2011). Anomias and paraphasias may be common. Strategies used for individuals with aphasia and/or TBI may facilitate rehabilitation.

The cognitive, language, memory, daily life rehabilitation needs must be addressed. SLPs are well versed in targeting perception, processing, memory, and attention needs. Specifically, we have suggested the therapeutic areas of word naming tasks, word memory tasks, auditory attention, divided attention, working memory, and cognitive speed utilizing reading and writing tasks.

The patient’s emotional needs also must be considered. Panic attacks, the inability to sleep, and emotional episodes may occur. Other adjustments will be needed as the patient adapts to a new way of functioning post-trauma (Forster et al., 2014). For example, Forster et al. (2014) identified four possible post-stroke patient outcomes: (a) disruption, adjustment, and acceptance; (b) cycles of disruption, adjustment, and acceptance; (c) disruption without adjustment and acceptance; and (d) continuing ongoing decline. The patient may need, and benefit from, continued therapy and/or counseling.

Research involving the healing powers that families may contribute has not been thoroughly investigated. Dennis, O’Rourke, Slattery, Staniforth, and Warlow (1997) indicated that the communication abilities of stroke patients improved when stroke family caregivers were involved. In addition, Duncan et al. (2005) stated, “The patient and the patient’s family members and/or caregivers are essential members of the rehabilitation team” (p. 103). Typically, one or two members of the family will act as the spokesperson for the one who is receiving medical and/or speech-language services. Suggestions for caregivers are often an overlooked aspect of speech and language therapy. Family caregivers are instrumental in the patient’s recovery. Hence, it is vital to reduce caregiver stress after a cerebral trauma to facilitate positive family outcomes. This is accomplished through reducing family burden, reducing patient dependence, enabling the patient to cope with everyday situations, decreasing patient mood disturbances, decreasing patient fatigue, and also decreasing patient passivity. In support of family members, SLPs must also encourage the family to always support and advocate for the patient, and most importantly, to seek caregiver support. In some long-term medical situations, support through therapy sessions and/or support groups are recommended. The role of families, being culture specific, needs to be further studied and considered.

In summary, SLPs are medical professionals who have the ability to impact lives through the services they provide. Although the SLP’s primary focus is related to discipline-specific therapy, it is also important to remember the overall needs of the patient and family. Medical professionals should recognize and support the family as they are vital to our client’s outcomes and overall well-being in the recovery process and beyond.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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