|Home > RNJ > 2011 > January/February > Caregiver and Nurse Hopes for Recovery of Patients with Acquired Brain Injury (CE)|
Caregiver and Nurse Hopes for Recovery of Patients with Acquired Brain Injury (CE)
From the moment an adolescent with acquired brain injury (ABI) is admitted to the hospital, his or her caregiver develops hopes for the recovery and future of the patient; however, rehabilitation nurses have reported that these hopes are not always congruent with the nurse’s observations of the adolescent’s progression. The purpose of this study was threefold: (1) explore the caregiver’s hope for recovery of his or her family member who has experienced an ABI, (2) compare the nurse’s hopes for the patient with ABI to those of the caregiver, and (3) identify what caregivers and nurses do to maintain hope for recovery during the rehabilitation process. This qualitative study validated that in some cases there was a disconnect between caregivers’ and nurses’ hopes for recovery. Four themes related to the caregiver’s maintenance of hope were identified: “the importance of family,” “taking one day at a time,” “knowing the patient better,” and “spiritual strength brings me through.” Enhancing the perceptual congruence between nurse and caregiver hope during rehabilitation will ultimately improve patient outcomes.
From the moment of admission and throughout the rehabilitation process, caregivers of patients with an acquired brain injury (ABI) develop hopes for the recovery and future of the patient. Research suggests that over time caregivers adapt their hopes based on the progress of the family member (Herth, 1993); however, little data exist to document this process. At the same time, rehabilitation nurses have reported that there is incongruity in their hopes for the recovery of the patients and those of the caregivers. No literature could be found to support the reported incongruity or the effect this incongruity might have on patient outcomes. Without a clear understanding of the similarities and differences related to the hopes that caregivers and nurses have, it is difficult to plan realistic patient care for discharge and develop pragmatic plans for the future of the patient with ABI. Consequently, the purpose of this study was threefold: (a) explore the caregiver’s hope for recovery of his or her family member who has experienced an ABI; (b) compare the nurse’s hopes for the patient with ABI to those of the caregiver; and (c) identify what caregivers and nurses do to maintain hope for recovery during the rehabilitation process.
This article will focus on the results of interviews with caregivers and primary nurses that describe and compare their hopes for the patient at the time of admission. Rehabilitation nurses who understand the hopes of the caregiver for his or her family member with ABI can design effective interventions that meet both the needs of the patient and the caregiver. As a result, these interventions will be founded on realistic, measurable nursing goals that also take into account the caregiver’s hopes to maximize the patient’s recovery.
Stotland (1969) recognized that hope motivates individuals to act and achieve. In the absence of hope, the individual is often dull and listless. Stotland defined hopefulness as high expectations of success and hopelessness as low expectations of success. Bland and Darlington (2002) distinguish hope from wishful thinking, noting that in a hopeful situation there is the potential for the outcome to be achieved. Dufault and Martocchio (1985) describe a model of hope that includes a distinction between general hopefulness and hope for specific outcomes. Family caregivers described having “attainable expectations” as a source that serves to increase hope (Herth, 1993). Caregivers who have reasonable expectations are able to redefine expectations as needed. In evolving circumstances such as the recovery process of an individual with ABI, flexibility in altering one’s expectations was necessary to engage hope in the context of an ever-changing situation (Herth). These findings suggest that guiding caregivers in setting realistic expectations for the family member with ABI supports the caregiver’s hope.
Herth (1993) found that hope was a buffer for stress and a requirement for effective coping. In addition, caregivers in this study described hope as “continually unfolding and changing in response to life situations” (p. 544). In their study of family caregivers, Bland and Darlington (2002) identified a range of sources of hope that come from internal and external sources. External sources identified included family, friends, professionals, and, sometimes, the family member suffering from an illness. Internal sources came “from within” and were generally associated with the caregivers’ religious beliefs and practices. Herth (1993) labeled these internal and external sources as hope-fostering strategies. Identifying sources of hope will assist caregivers in developing strategies that maintain hope while setting realistic recovery goals during the rehabilitation of their family member with an ABI .
Researchers have documented that the physical and psychological health of the caregiver is often altered by the caregiving experience (Gerkensmeyer, Perkins, Scott, & Wu, 2008; Halm & Bakas, 2007; Holtslander, 2008; Hong & Kim, 2008; Teel, Duncan, & Lai, 2001; Wennman-Larsen & Tishelman, 2002). Most research on caregiver health has centered on spouse and child caregivers of persons with a terminal or long-term illness. In this study, the sample included parents and grandparents of adolescents who experienced traumatic brain injury and were hospitalized in a rehabilitation center. These caregivers did not have experience with long-term home care for their family member with ABI.
The literature is void of prospective research that examines the caregiver’s and rehabilitation nurse’s hopes and expectations for an adolescent who has an ABI. This study expands the science of nursing knowledge on this topic and provides a framework for the development of interventions that merge the caregiver’s hopes with the reality of the day-to-day recovery progression and the adolescent’s long-term potential for recovery.
This study used triangulation of data from multiple sources (i.e., nurses, family caregivers) and multiple methods (i.e., interviews, surveys) to gather information related to hope for recovery of patients with ABI. Researchers asked caregivers of 21 patients with ABI admitted for inpatient rehabilitation to participate in an interview and complete surveys on personal hope and hope for the family member with ABI. The interviews and completion of the surveys by caregivers occurred within 2 weeks of patients’ admission to inpatient rehabilitation. In addition, caregiver, patient, and nurse demographics and patient clinical data were collected. Interviews with patients’ primary nurses occurred within 2 weeks of admission. Most caregivers visited their family member every day. Therefore, researchers were able to arrange the interview for both the caregiver and the nurse to take place on a day when the nurse was working, avoiding the risk of data contamination from discussion of the interview between the nurse and caregiver.
The caregiver was defined as the person the family identified as the individual who would provide the majority of care (e.g., parent, guardian, significant other) for the patient with ABI after discharge. Caregivers in this study included parents, grandparents, and stepparents. The caregiver criteria for selection included being able to speak and read English at an 8th grade level and being older than 18 years old.
The patients were individuals who had sustained an ABI and been admitted to an inpatient rehabilitation facility. To be included in the study, patients were between 15 and 21 years old, unmarried, and whose primary/permanent residence was the home of their parents or guardian. The patients were stratified into two groups. Group 1 included ABI patients admitted at a Rancho Level I, II, or III. All patients at levels I, II, or III require total nursing care. The ABI patients assigned to Group 2 were admitted at a Rancho Level IV, V, or VI. Patients at these levels require assistance with activities of daily living (Rancho Los Amigos National Rehabilitation Center, 2002). See Table 1 for a description of Rancho Los Amigos Levels of Cognitive Functioning Classification Guidelines. The recovery for patients who were classified at Rancho Levels I–III was expected to be significantly different than for those patients listed at Rancho Levels IV–VI. Because of the lower cognitive functioning of patients admitted at Rancho levels I–III, recovery was projected to be limited if it occurred at all. It was anticipated that over time caregivers in the two groups would have different hopes for patients based on the perception of the severity of patients’ brain injuries.
The nurse selected for the interview was the primary nurse who had been assigned responsibility for the overall care of the patient. Typically, this nurse coordinated care for the patient and was the nursing representative for the patient in team meetings.
The location for this study was a major Southeastern catastrophic care hospital. This large free-standing hospital is devoted to the medical care and rehabilitation of people with spinal cord injury and disease, ABI, multiple sclerosis, and other neuromuscular problems. The facility has 100 beds, including an eight-bed intensive care unit and a 20-bed ABI unit. Each year, more than 850 patients are admitted to the hospital. The average patient admitted to this facility is male, 18–35 years old, and injured in a car accident. The length of stay varies but ranges from 3–5 weeks.
Caregivers and nurses participated in semistructured interviews within 2 weeks of a patient’s admission to the rehabilitation center. At the time of the interview, caregivers and nurses completed demographic forms. Patient background and clinical data were collected from the chart. During the interview, caregivers were asked about the trauma that caused the ABI, how they were dealing with the situation, what their hopes were for the family member, and what his or her perceptions were of the staff’s goals for the patient. Nurses were asked questions regarding their hopes for the patient and those of the caregivers. Interview guides can be found in Box 1.
Demographic information collected from the caregivers include age, race, gender, marital status, education, annual household income, number of persons living in a household, past caregiving experiences, relationship to the patient, perceived perception of personal health, level of fatigue and spirituality, perception of concurrent losses, and occupations of the caregiver and patient. The nurse demographic data form requested information about age, gender, education, years of nursing experience, years of rehabilitation nursing experience, and information related to nursing certifications.
The clinical data collected from the patient’s chart include age, gender, cause of injury, rehabilitation diagnosis, date of injury, date of admission to the inpatient rehabilitation hospital, date of initial conference between the caregiver and the physician overseeing care, anticipated date of discharge, admission Rancho Level, and goals identified by the caregiver upon admission.
The clinical nurse specialist (CNS) for the ABI unit, in consultation with the primary care nurse, identified eligible participants. The CNS or primary nurse requested permission from the caregiver for the researchers to contact the caregiver. With permission, the researcher contacted the caregiver within the first week after the patient had been admitted to the rehabilitation setting and set up a time to meet the caregiver to discuss the study. If the caregiver was willing to participate, researchers obtained consent and the interview and questionnaires were completed during this meeting. Interviews were conducted in a quiet, private location convenient for the caregiver. The interviews were audio recorded and given a unique identifier to ensure confidentiality. Each interview lasted approximately 1 hour. Following the interview, the caregiver completed the demographic data form and received a gift certificate in appreciation for their participation. Audio recordings were transcribed verbatim as soon as possible following the interview.
The CNS of the rehabilitation facility provided the researchers with the names of the primary nurses responsible for each participant. With the primary nurse’s permission, the researcher was given contact information to arrange a date, time, and location for an interview. During this meeting, usually the same day as the interview with the caregiver, the researcher explained the study, obtained consent, and conducted the interview at a private location convenient for each nurse. The interviews were audio recorded and given a unique identifier to ensure confidentiality. Each interview lasted less than 1 hour. Following the interview, the nurse completed a demographic data form. Whenever possible, the same researcher interviewed the caregiver and primary nurse for a patient. Following the interview, researchers offered each nurse an honorarium in appreciation of their participation.
The researchers coded the transcribed interviews for themes associated with the nature of hope. This process of coding began with three researchers considering each interview independently. The researchers then met to compare the themes they identified. If one researcher found a theme not identified by the others, it was discussed. For a theme to be presented in this report, all three researchers agreed on its presence and meaning. Another method used to increase trustworthiness involved the researchers becoming very familiar with the data (Miles & Huberman, 1994), which they accomplished by conducting and reading the interviews (in addition to coding all the interviews). Finally, the themes and findings were reported to the nurses at the rehabilitation center. The nurses validated the findings in their interviews.
The caregivers’ and primary nurses’ goals were described as they related to hopefulness for recovery over the course of the study. Nursing hopes were compared to those of the caregivers for similarities and differences. During the interviews, caregivers and nurses were asked about what helped them maintain hope throughout the recovery process. Themes identified from the data included “the importance of family,” “taking one day at a time,” “knowing the patient better,” and “spiritual strength brings me through.”
On average, caregivers were 45 years of age (SD = 6.94), primarily White, female, and married. Most were parents of the patient; however, a grandparent and a stepparent also participated. The majority of caregivers had more than a high school education, worked in a service or professional capacity, and had a household income of >$50,000 (Table 2).
The average age of the adolescent patients was 17.76 years (SD = 1.44). They were primarily White, male, and had suffered a brain injury due to a motor vehicle accident. Other causes of injury included a gunshot wound to the head and sports-related injury. Rancho Levels for the patients ranged from II–VI (Table 3). The average age of the primary nurses was 45.07 years (SD = 9.63); they were female and had an associate or bachelor’s degree in nursing. Most of the nurses had been a nurse for more than 11 years, and had more than 6 years of rehabilitation nursing experience (Table 4).
Research Objective 1: Exploring Caregivers’ Hopes
When asked about what they hoped their loved ones would be doing in a year, all of the caregivers who were interviewed were able to express the hopes they had related to their loved ones’ futures. The hopes expressed by caregivers primarily dealt with completing high school, trade school, or college if the loved one was in school prior to the incident. If the loved one was employed prior to the injury, the caregiver hoped that the patient would be able to regain employment. The mother of a 16-year-old Rancho Level V female patient said, “[I hope she’ll] be back at school. I anticipate she’ll be back in.” The mother of an 18-year-old Rancho Level V male patient said, “I hope he’ll be back at college.” Another mother said, “Hopefully she’ll be, you know, at least in cosmetology school. Hopefully she’ll be graduated from that in a year” (Mother of an 18-year-old female, Rancho Level V patient). Another patient, an 18-year-old Rancho Level VI male, had been repairing golf carts prior to the accident. His mother said, “He will probably still be working at the golf cart place. [He’ll] be hanging out with his friends. Probably fishing.”
Caregivers expressed hopes that the loved one would be resuming the preexisting activities 1 year after the injury. The caregivers did not express many hopes for attainment of specific activities of daily living, and inferred these activities were an automatic expectation. For example, if their loved one was going to be back at school or work, naturally they would be continent and independent in all activities of daily living—it was an assumption, an expectation.
Research Objective 2: Comparison of Caregiver Hope and Nurse Hope
In addressing the second aim, the caregivers and the nurses often expressed similar hopes and expectations for the patient. This was particularly true for situations in which the patient was admitted with a higher Rancho score. When describing their hopes, caregivers focused on their hopes for the patient’s future. As this mother noted,
I’m hoping that she’ll be as close to the [person] that we had before the accident as possible. I do understand that she won’t be 100% because of the injuries, but getting her as close to that is...our goal. Hoping that she will be well enough to be back at school…I hope she’ll be as much on her own as she can possibly be. (Mother of a 16-year-old Rancho Level V female patient)
The primary nurse of the same patient presented hopes similar to the caregiver’s. The nurse stated, “I think she’ll be able to…get back to baseline.”
Nurses would often address specific markers of progress such as toileting and showering, yet the caregivers did not typically express the same markers. A primary nurse of a male Rancho Level VI patient had these specific hopes for recovery: “[I hope he’ll be able to recover] to a level where he can do things for himself as far as like going to the bathroom, being able to feed himself…” The mother of this patient had hopes that included getting back to college and having a normal life and future. These seemingly different hopes may be related to the fact that nurses focus on specific aspects of daily living. Nurses’ hopes are measurable and attainable. They want the outcomes to be attainable during the hospital stay. However, the parents envision the patient back in his or her home or school environment; the hospital is merely a temporary phase. Caregivers’ hopes are long term and reflect the normalcy of life as they knew it before the accident. For caregivers, the specific skills of going to the bathroom and feeding oneself tend to be assumed and do not need mentioning. Caregivers hope the patient will be attending college; therefore, toileting and eating are a foregone conclusion.
The hopes expressed by the caregiver and the primary nurse were dissimilar in other situations as well. One mother was very specific about hopes for her daughter’s future. This mother talked about her hopes not changing from the hopes she had prior to the accident. The mother stated: “She’s going to college…she wants to play soccer…we certainly hope, we’re going to try for it…she wants to do something in medicine, like a nurse or nurse practitioner...yes, it’s realistic” (Mother of a 16-year-old Rancho Level V female patient). The primary nurse of this same patient had very different hopes. The nurse was quick to note the patient’s deficits and how these would limit her abilities. This nurse did not indicate that college was something she hoped for in the future of this particular patient. The nurse stated,
Hopefully she will be able to speak for herself. She’s got a right-sided weakness. It’s hard to know what’s going on in her mind since we’re not getting any verbalization. She’s getting her continence…[back]…asking for the bedpan.”
Family members were quick to acknowledge even the smallest accomplishments. In a few cases, caregivers reported an accomplishment that the nurse could not validate as meaningful. For example, the mother of a 16-year-old Rancho Level V female patient said “She’s asking me questions and she’s a lot more alert…more orientated and can remember day-to-day things.” The nurse for this patient was not sure the patient was oriented. She explained, “[We don’t know] if she’s got all her wits about her.” One of the nurses of an 18-year-old Rancho Level III male patient summed it up well. This nurse realized the parents thought they were seeing things the nurses were not seeing. She said, “…Sometimes you see what you want to see…it’s sad, but I don’t see that he’s gonna emerge.…They [the parents] say he does [respond] with them, but the rest of us, none of us have seen it.” This presents a difficult situation for all involved. Caregivers are “seeing” recovery while the nurses are trying to document their observations and make an accurate assessment of the patient. No one wants to doubt the other, but each is very sure of his or her interpretation of the observation.
Research Objective 3: Maintaining Hope
The Importance of Family. Both nurses and caregivers were able to describe aspects of care they believed helped maintain hope. They also both described the importance of the family’s presence during the recovery process. Caregivers and nurses noted the positive association between family involvement and recovery. This improvement in a patient’s status helped both caregivers and nurses maintain their respective hopes for a positive outcome. Caregivers and nurses noted that if the family was involved, patients seemed to recover faster and had better outcomes. One father stated, “You know, based on his drive, and my support, and my wife’s support, and the family support, and the families surrounding him, you know, I think he’ll achieve as best as he can” (Father of 19-year-old Rancho Level IV male patient). This father was convinced that the family support played an important role in improving status. The primary nurse of this 19-year-old male patient agreed with the father. She stated, “[I’ve noticed] when you have patients that come in and the family members are [really] supportive and stand by these patients, they tend to recover faster than usual, and tend to recover better.” The nurses and caregivers agreed that an involved family facilitated a better recovery. This was a factor in maintaining hope.
Taking One Day at a Time. Hope is maintained as day-to-day improvements in the patient’s status are realized. Caregivers were able to identify the daily improvements and determine that the patient was making progress. These improvements supported the caregiver’s hope. They realized that things were not staying the same, and this encouraged their hope. “Everything started out as minute by minute…then it got to be hour by hour, and then finally day by day, it just kept getting better every day” (Grandmother of a 15-year-old Rancho Level VI male patient).
A father of a 19-year-old Rancho Level IV male patient had this comment about his son,
I mean it’s little, it’s small, and it’s…added to baby steps, but you know, it’s that every day. You know, every day a little improvement at the end of the week, you try to reflect back where he was a week ago and you’re like, “Hey, this isn’t bad!”
Even the primary nurses would comment on the day-by-day progress; “I mean it’s been day by day by day. It’s been changing more and more and more, and when they had him up and walking in this little walker machine that we have, she [the mother], couldn’t believe it” (primary nurse for a 19 year-old Rancho Level IV male patient).
These day-by-day improvements were beneficial in maintaining hope for both caregivers and nurses. When the caregivers and nurses looked back, they realized positive changes had taken place, and therefore thought there was reason to continue to hope. Although initially the outcome may have been bleak, things were changing for the better. As long as there was progress and recovery was not stagnant, there was reason to hope.
Knowing the Patient Better. Caregivers often believed they knew the patient better than the staff did. They were able to identify aspects of behaviors present in the patient before the accident as they emerged in the recovering patient, and this reinforced the feeling that recovery was occurring. This sense of normalcy was reassuring and allowed caregivers to maintain hope. This insight helped caregivers determine that their hope was realistic. One mother’s “inside knowledge” about her son helped her see the seemingly abnormal behavior as normal. She saw his behavior as an indication that he was recovering, and this helped her maintain hope.
The day after he woke up from his coma…when I got there that morning I said, “how’s he doing?” They [the nurses] said, “Well, he’s doing OK, but he’s a little confused today…he was talking about juggling and he was quoting something ‘wherefore I goeth.’” I went in there to talk to him and I said, “Oh, he’s fine. He’s not confused. Three weeks before this accident, his senior class had been studying Shakespeare… and he was a juggler at the festival for Shakespeare. He’s quoting Shakespeare and telling you about juggling because that’s what he did.” (Mother of an 18-year-old Rancho Level IV male patient)
Another mother recognized that her son’s current behaviors were similar to preinjury activities and that the nurses thought her son was worse than she believed him to be. She sensed these behaviors as normal, which allowed her to maintain hope for recovery.
I guess because I’ve always been around him and he’s been ADD [attention deficit disorder] all of his life. So nothing has really changed for us, other than the fact that he’s got part of his skull missing. From everything that he’s been through, maybe they [the nurses] thought he would have been worse than [he is].” (Mother of an 18-year-old Rancho Level VI male patient)
Parents thought their inside knowledge helped them see progress when nurses and staff did not. In fact, sometimes nurses thought patients were talking about things that did not make sense but the caregiver was able to provide insight that indicated the patient was actually remembering events that had occurred in the past. For nurses, sometimes parents’ inside knowledge was helpful for understanding some of the behaviors they were seeing. Nurses also recognized that sometimes parents’ inside knowledge was not always useful and did not elicit any new information. However, caregivers’ ability to see progress supported their hope for recovery of their loved one.
Spiritual Strength Brings Me Through. Caregivers consistently noted that a strong sense of spirituality helped them maintain hope. They noted their sense of spirituality gave them added strength. It was no longer necessary to have all the answers, but rather their sense of spirituality allowed them to believe they were part of some larger plan.
My full belief and my full thought process through all of this is, “There’s a reason he’s still alive and there was a reason why this happened.” Why? I don’t know. That’s not for me to question. It’s simply mine to be grateful for and take advantage of the opportunity to do or to see or to help the plan finish its way out, and that’s the way I look at it. (Mother of an 18-year-old Rancho Level IV male patient)
This expression of gratefulness indicated the mother’s sense of renewed hope for a future.
Another spiritual component that helped caregivers maintain hope was the camaraderie associated with a strong sense of spirituality. Caregivers would note the ability to call others with a similar sense of spirituality, and this sense of togetherness helped maintain hope and the feeling that things were going to be okay. The following is one mother’s description of this camaraderie:
I just have a real big faith…church and God, you know, just the faith that brought me through a lot… Then I called my mom, and we prayed, and I thought, okay, I can make it, all I have to go on is my faith in God.” (Mother of an 18-year-old Rancho Level VI male patient)
After she was able to communicate with another spiritually connected person, she was able to maintain hope. She was able to get through the tough times and support her son in his recovery.
The importance of spirituality in the lives of these caregivers was borne out by their responses to a survey question assessing its importance: 18 caregivers (85.7%) indicated that spirituality was very important, one caregiver (4.8%) declared it was important, and two caregivers (9.5%) felt it was somewhat important.
All of the caregivers had hopes for the recovery of their family member and were willing to share those hopes. In many cases, the caregivers’ hopes were generally realistic. As described by Dufault and Martocchio (1985), who noted a model of hope addressing “specific” hopes, caregivers in this study identified hopes for specific future outcomes for the patient (e.g., attending college or vocational school, being independent). In most cases, caregivers and nurses shared common hopes and expectations for the patients. However, the nurses were often much more pragmatic when describing patient expectations; for example, they would identify specific activities of daily living (e.g. toileting, brushing teeth, combing hair, showering) that the patient needed to master. It was evident that caregivers’ hopes were strengthened by the accomplishments of their loved ones. These accomplishments allowed the caregiver to adapt their hopes as recovery occurred, supporting Herth’s (1993) research.
What are the potential consequences when caregivers and nurses have dissimilar hopes and expectations for the patient? If this incongruence is short term, wherein the caregiver simply needs more time to redefine his or her expectations, there may be no consequences. However, if this disconnect is not resolved, at what point does the caregiver’s inability to accept the limitations of the patient become dysfunctional? The incongruence in hopes could potentially become a crisis if it interferes with the formulation and implementation of appropriate discharge plans. In such cases, the rehabilitation nurse needs to play a pivotal role in identifying the problem, conferring with the rehabilitation team, and participating in the implementation and monitoring of strategies meant to help the caregiver and family members focus on discharge plans that meet the needs of their loved one.
Caregivers in this study identified both internal and external sources of hope as described by Bland and Darlington (2002), who noted a model of hope addressing “specific” hopes. Family and friends were crucial supporters of caregivers and patients, so much so that caregivers and nurses felt this external support was therapeutic for the patients. During interviews, caregivers frequently mentioned looking forward to having their family member placed closer to home so that both the adolescent and the caregiver could benefit from having other family and friends nearby. Several caregivers commented on how important it would be for their adolescents’ friends to visit.
Recovery from ABI is a slow process. Both caregivers and nurses recognized that “taking one day at a time” was helpful. Caregivers would share the daily accomplishments that their family member had achieved by putting these achievements in the context of the adolescent’s deficits the day or week before. These caregivers had faced the life-threatening crisis of the ABI; now they were involved in the recovery phase. They had transitioned from minute-by-minute and hour-by-hour fear for the life of their family member to the day-to-day “baby steps” that their adolescent could accomplish. The realization of these accomplishments allowed caregivers and nurses to maintain hope for recovery. If things were better today than they were yesterday, then caregivers and nurses felt hopes were realistic and therefore maintained.
Because caregivers knew the patient better than staff members did, they were quick to clarify nurses’ perceptions that were inaccurate. In cases for which this need for clarification was described, it was apparent that the caregivers wanted to ensure the staff members had the correct interpretation of the situation. It was important that the staff did not assign a negative interpretation to the circumstance. As noted earlier, one caregiver needed the staff to know that her adolescent had been studying Shakespeare and that his ramblings were a part his school-life reality. She did not want the staff to think he was confused. Open dialogue between the caregiver and the nursing staff was helpful for clarifying the state of the patient’s cognition and connectedness to recent reality. Exchanges between caregivers and staff highlight the importance and benefits of good communication.
Caregivers identified a source of hope that came “from within,” which is very similar to Emblen’s (1992) definition of spirituality as the “inner dimension of being human attuned to the most valuable aspect of life that motivates and guides one’s significant choices.” Caregivers noted their spiritual strength helped them move on and guided them throughout the recovery process. Their spiritual beliefs were a source of strength and support for them (Bland & Darlington, 2002). This finding was supported by both qualitative and quantitative data.
This convenience sample did not include any caregivers whose adolescent had experienced an ABI with resultant Rancho Levels I or II. It is possible that their stories may have been different than those presented here. Also, the convenience sample was drawn from patients in one rehabilitation center in the Southeast.
Implications for Clinical Practice
Rehabilitation nurses can support patients’ progress by advocating for family-centered care and by encouraging caregivers’ enthusiastic and active involvement in the rehabilitation process. Open communication between the caregiver and the nurse can be fostered so that nurses have an accurate assessment of the patient’s progress. This study validated the practice of rehabilitation centers welcoming family and friends of patients when the patient is not in therapy. Both caregivers and nurses stated that family involvement enhanced patients’ progress. Finally, caregivers noted that spirituality was a support for them. Because nurses work more closely with the patient and caregiver than other healthcare providers, they are in a unique position to support caregivers with their spiritual needs and explore the potential for referrals or contacts to spiritual advisers.
Implications for Research
Further research is needed to explore the consequences of situations in which the caregiver and the nurse do not have similar hopes for the patient. When differences in caregivers’ perceptions seriously impede a patient’s discharge or placement, interventions that resolve the conflict should be examined. Studies that examine the effect of families’ and friends’ involvement in patients’ progress are warranted. Research exploring different involvement types and how they affect patient outcomes would help determine the best interventions for improving patient outcomes. Also recommended are studies that examine the effect that a personal sense of spirituality can have on the well-being of caregivers throughout the patient’s recovery from ABI.
Rehabilitation nurses reported a difference between the hopes and expectations of caregivers of patients with ABI and the nurses who care for them. This study validated that, in some cases, a difference in perception did exist. Enhancing the perceptual congruence between nurses and caregivers during rehabilitation will ultimately improve patient outcomes. This research expanded the knowledge about the experiences of caregivers of adolescents with an ABI and sets the framework for nurses to design interventions that support the development of realistic hopes during the many phases of recovery.
This study was partially funded by the Rehabilitation Nursing Foundation of the Association of Rehabilitation Nurses and the Georgia State University’s College of Health and Human Sciences Intramural Grant Program. We would like to acknowledge the support of the nurses and staff at the Shepherd Center, and we would like to thank the caregivers who graciously shared their experience with us.
About the Authors
Mary Catherine Gebhardt, PhD RN CRRN, is an assistant professor at Georgia State University in Atlanta, GA. Address correspondence to her at firstname.lastname@example.org.
Linda A. McGehee, PhD RN, is director of Strengthening Surveillance and Response in Central Africa at the National Foundation for the Centers for Disease control and Prevention in Atlanta, GA.
Cecelia Gatson Grindel, PhD RN CMSRN FAAN, is associate director for academic affairs at Georgia State University in Atlanta, GA.
Linda Testani-Dufour, MSN RN CRRN, is a clinical manager of the Post Acute Brain Injury Unit at Shephard Center in Atlanta, GA.
Bland, R., & Darlington, Y. (2002). The nature and sources of hope: Perspectives of family caregivers of people with serious mental illness. Perspectives in Psychiatric Care, 38, 61–68.
Dufault, K., & Martocchio, B. C. (1985). Symposium on compassionate care and the dying experience. Hope: its spheres and dimensions. Nursing Clinics of North America, 20(2), 379–391.
Emblen, J. D. (1992). Religion and spirituality defined according to current use in nursing literature. Journal of Professional Nursing, 8, 41–47.
Gerkensmeyer, J. E., Perkins, S. M., Scott, E. L., & Wu, J. (2008). Depressive symptoms among primary caregivers of children with mental health needs: Mediating and moderating variables. Archives of Psychiatric Nursing, 22(3), 135–146.
Halm, M. A., & Bakas, T. (2007). Factors associated with caregiver depressive symptoms, outcomes, and perceived physical health after coronary artery bypass surgery. Journal of Cardiovascular Nursing, 22(6), 508–515.
Herth, K. (1993). Hope in the family caregiver of terminally ill people. Journal of Advanced Nursing, 18, 538–548.
Holtslander, L. F. (2008). Caring for bereaved family caregivers: Analyzing the context of care. Clinical Journal of Oncology Nursing, 12(3), 501–506.
Hong, G. R., & Kim, H. (2008). Family caregiver burden by relationship to care recipient with dementia in Korea. Geriatric Nursing, 29(4), 267–274.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. London: Sage.
Rancho Los Amigos National Rehabilitation Center. (2002). Family guide to the levels of cognitive functioning. Retrieved January 18, 2006, from www.rancho.org/patient_education/bi_cognition.pdf.
Stotland, E. (1969). The psychology of hope. San Francisco, CA: Jossey-Bass Publishers.
Teel, C. S., Duncan, P., & Lai, S. M. (2001). Caregiving experiences after stroke. Nursing Research, 50(1), 53–60.
Wennman-Larsen, A. & Tishelman, C. (2002). Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences, 16, 240–247.
Rehabilitation Nursing is pleased to offer readers the opportunity to earn nursing contact hours for its continuing education articles by taking a posttest through the ARN Web site. The posttest consists of questions based on this article, plus several assessment questions (e.g., how long did it take you to read the article and complete the posttest?). A passing score of 80% on the posttest and completion of the assessment questions yield one nursing contact hour for each article.
To earn contact hours, go to www.rehabnurse.org/education/cearticles.html. (You may also go to www.rehabnurse.org → Education → RNJ Online CE.) Once there, you may read the article again or go directly to the posttest assessment by selecting "Purchase CE Test."
Between January 1, 2011, and February 28, 2011, contact hours for this article will be free for ARN members who complete the posttest and evaluation. After February 28, 2011, regular pricing will apply.
The Association of Rehabilitation Nurses is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC-COA).