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Writers' Award Winner: Experiences of Family Members Acting as Primary Caregivers for Patients with Traumatic Brain Injury
Research on caregiving experiences of families of patients with traumatic brain injuries has been limited to studies emphasizing negative aspects of care. During this study, families caring for patients with traumatic brain injury (TBI) shared their experiences, allowing us to collect basic data about factors related to their psychosocial adjustment. Fifteen primary caregivers were interviewed using semistructured interviews, and content analysis was performed on obtained data. One thousand eighteen recording units were grouped into seven categories: (1) spending time with the patient with TBI and understanding invisible disabilities, (2) evaluating medical professionals’ handling of the case, (3) devoting oneself to caring for the patient with TBI despite feeling psychological distress, (4) accepting the disability and constructing a care system, (5) seeking out and participating in specialized treatment (rehabilitation) for TBIs, (6) hoping for better understanding and creation of an appropriate response system for TBIs, and (7) making efforts to influence people around the caregiver and those in similar circumstances to promote deeper understanding of TBIs.
In Japan, a country that lacks an organizational and economic infrastructure for supporting people with traumatic brain injuries (TBI), an understanding of the realities facing patients with TBI remains inadequate. Although results from two national studies about TBI have been reported (Dohi, Ariga, & Nakamura, 2003; Uzura, Okuno, & Ogawa, 2008), only 19 facilities (of the more than 200 emergency and critical care centers in Japan) participated in these studies. Furthermore, very few studies have evaluated the affects of TBI on the families of patients with TBI.
According to a survey conducted by the Nagoya General Rehabilitation Center (Traumatic Brain Injury Rehabilitation Research Group, 1999), approximately 80% of caregivers of patients with TBI experience psychological stress. The emotional stress experienced by caregivers increased as opportunities for the patient with TBI to participate in society decreased and the severity of cognitive and behavioral disorders increased. Furthermore, Akamatsu, Ozawa, and Shirasawa (2000) found that roughly 80% of families who provide primary care to patients with TBI complained of subjective hardship in four categories: (1) lack of rehabilitation of intellectual functions, (2) interpersonal relations within the family, (3) impact on the lives of family members, and (4) psychological stress. In another study, Watanabe, Shiel, Asami, Taki, and Tabachi (2000) followed the families of patients with TBI admitted to the emergency room of Saga ¨Medical School for 1–3 years and found that families of three out of nine patients with brain injuries were at risk for anxiety or dysphoria, and that the patients’ inability to complete cognitive or behavioral tasks was a significant source of stress. In another study, Watanabe, Shiel, Asami, Taki, and Tabachi (2000) followed the families of nine patients with TBI for 1–3 years and showed that three families were at risk for anxiety or dysphoria, and that patients’ inability to complete cognitive or behavioral tasks was a significant source of stress. According to Watanabe, Shiel, McLellan, Kurihara, and Hayashi (2001), their results were consistent with a study reported in Great Britain; however, families in Great Britain were more likely to know how to cope with the problems associated with being a caregiver of a person with TBI. One survey, conducted from the perspective of nursing care, tracked nine family members who cared for relatives who had sustained a TBI through traffic accidents to measure the strain of providing this care. This survey identified seven categories of strain, three of which were distinct from those also associated with the stress of caring for elderly dementia patients and patients with higher brain dysfunction: anxiety of becoming isolated from society along with the disabled family member, economic strain incurred due to the accident and disability, and psychological strain caused by treatment after the accident and interaction with others (Nagashima, 2006).
These family studies conducted in Japan stress the negative aspects of the caregiving experience. However, the experience of accepting one’s own existence, functioning, and abilities in a positive manner—known as the “stamina experience”—influences the process through which the disabled person accepts their disability (Misawa, 1985). Similarly, it is important that families accept their own situation and the situtation of their disabled family member to attain psychosocial adjustment. McCubbin and McCubbin (1991) developed the adaptation and adjustment model for families caring for a disabled person. They have demonstrated that one form of support that facilitates a family’s adjustment involves encouraging the attribution of positive meaning to events. The findings mentioned above suggest that to support families caring for TBI patients, it is necessary to not only correct the negative aspects of caregiving, but also to emphasize the positive aspects of their experience.
Similar studies in other countries have reported on the experiences of caregivers of patients with TBIs (Johnson, 1995; Karpman, Wolfe, & Vergo, 1986; Stansfield, 1991). These studies were limited by the type of family relationship between caregiver and patient and the period of care. This study aims to present an overall picture of the caregiving experiences of families caring for patients with TBIs to provide nursing support to families in this situation. By clarifying these caregiving experiences, we can obtain basic data on factors related to the psychosocial adjustment of caregivers.
Our study included 15 people who provided primary care to patients with TBI and who belonged to the Traumatic Brain Injury Association in the Chubu and Kanto regions of Japan. Officers of this association helped us select participants for the study. Families received a written explanation of the study’s purpose, methods, and methods of storing and processing research data. It was also explained to potential participants that interviews would be recorded on audiotape, their anonymity would be maintained in the survey results, and they were free to refuse participation in the study. After families agreed to participate in the study, researchers explained the project again, and participants signed a consent form. Approval was also obtained from the ethics committee of the researchers’ home institution.
We conducted interviews from August 2008–December 2008 in private rooms at the Traumatic Brain Injury Association. Each interview lasted 30 minutes–1 hour and was tape recorded with participants’ consent. We used a semistructured interview method, and participants were asked to speak freely about their experiences following the injury sustained by their family member. During the course of the interviews, the following information was collected: (1) case background, including the age of the patient with TBI (at time of injury and current), sex, occupation (at time of injury and current), date of injury, cause of injury, description of medical condition, course of treatment, disability, family composition, participant age and occupation (at time of injury and current); and (2) experiences following injury, including how the participant felt about different aspects of the patient’s condition following injury, how the participant has treated or responded to the injured person, and how the participant’s life has changed.
We used the Berelson method of content analysis (Berelson, 1952). Specifically, we created verbatim transcripts of the interviews. We then selected statements pertaining to the primary caregivers’ experiences following the injury, with one content statement used as a recording unit. These were used to inductively generate subcategories based on similarities in semantic content. Three university faculty members familiar with the field of rehabilitation care independently assigned the recording units to subcategories. Reliability was confirmed by agreement of two of three evaluators. Instances in which no agreement was reached were reevaluated. The three researchers then generated categories from the subcategories based on similarities determined by consensus, and the frequency of recording units was calculated.
Demographic information about the caregivers and patients is presented in Table 1.
Elements of Family Experiences
We identified 1,018 recording units through content analysis and, based on similarities, classified these into seven categories and 19 subcategories (Table 2).
Spending time with the patient with TBI and understanding invisible disabilities. There were 541 recording units included in this category (53.1% of the total number of recording units). These were further divided into four subcategories: recognizing the TBI patient’s specific symptoms (134 recording units), evaluating symptoms exhibited by the TBI patient (302 recording units), analyzing the behavior of the TBI patient (14 recording units), and recognizing the complexity of higher brain dysfunction (91 recording units). This category was mentioned in 14 of 15 cases. The details of the subcategory are shown in Table 2.
Evaluating nurses’ and medical professionals’ handling of the case. There were 50 recording units included in this category (4.9% of the total number of recording units). This category was mentioned in 13 cases. This category is composed of a single subcategory—evaluating nurses’ and medical professionals’ handling of the case.
Devoting oneself to caring for the patient with TBI despite feeling psychological distress. There were 123 recording units included in this category (12.1% of the total number of recording units). The category is divided into three subcategories: providing intensive care to the patient with TBI (71 recording units), feeling emotional distress and being unable to accept the disability (43 recording units), and perceiving stress from caregiving and recognizing effects from this stress (9 recording units). Statements in this category were made by all 15 participants.
Accepting the disability and constructing a care system. There were 228 recording units included in this category (22.4% of the total number of recording units). These were classified into the following seven subcategories: accepting that the disability is permanent (16 recording units), self-evaluation of care and other family members’ responses (55 recording units), evaluating responses and mental state of family members (41 recording units), reorganizing family roles and duties (10 recording units), changing ideas about care by attributing positive meaning to events (27 recording units), providing care in a way that utilizes societal resources and social support (45 recording units), and providing support geared toward securing the independence of the patient with TBI and family members (34 recording units). Statements in this ¨category were obtained from all 15 cases.
Seeking and participating in specialized treatment (rehabilitation) for TBIs. There were 31 recording units included in this category (3.0% of the total number of recording units). Statements in this category were obtained from 13 cases. This category is composed of one subcategory—seeking out and taking on specialized treatment (rehabilitation) for TBIs.
Hoping for better understanding and creation of an appropriate response system for TBIs. There were 20 recording units included in this category (2.0% of the total number of recording units). These were classified into two subcategories: hoping for appropriate responses from nurses and medical practitioners and hoping for understanding and appropriate treatment of TBI patients from society. Each of these subcategories included 10 recording units. This category was obtained from 6 of 15 cases.
Making efforts to influence people around the caregiver and those in similar circumstances to promote deeper understanding of TBIs. There were 25 recording units included in this category (2.5% of the total number of recording units). This category was obtained from five cases and includes one subcategory—making efforts to influence people around the caregiver and those in similar circumstances to promote deeper understanding of TBIs.
The seven categories and 19 subcategories identified in this study included not only problems (burden and psychological distress in caregiver), but also positive or affirmative expressions. Below is a discussion of the characteristics of primary caregiver experiences identified in this study, as well as issues associated with nursing care support as they relate to previous studies.
Overview of Primary Caregiver Experiences
Karpman and colleagues (1986) interviewed 10 parents of patients with TBI about the adjustment process and identified 12 themes. Although the themes identified in this study differ in name (e.g., maintenance of a positive attitude; continuation of care, power of resistance, endurance, etc.; family unity and cooperation; external support systems; efforts at reception; and people who provide advice), they are similar in nature to some of our categories (e.g., accepting the disability and constructing a care system, making efforts to influence people around the caregiver and those in similar circumstances to promote deeper understanding of TBIs). Karpman and colleagues’ theme of training and cognitive stimulation echoes our category of seeking out and participating in specialized treatment (rehabilitation) for TBIs. Similarly, Karpman and colleagues’ themes of overprotectiveness and psychological tension are analogous to one of our categories—devoting oneself to caring for the TBI patient despite feeling psychological distress.
Categories identified in Karpman and colleagues’ study that did not correspond to any in our study were faith and economic problems. Perhaps the absence of the category of faith from our study reflects cultural differences between our study population and that of Karpman and colleagues; only 30% of Japanese people have religious affiliations, and of those, the rate of participation in religious activities is low (Ishii, 2008). None of the participants in our study mentioned serious economic problems, although some caregivers were saving money to provide for their patients after they passed away. Participants in our study may not have been as concerned with economic problems as those in Karpman and colleagues’ study because in 10 of 15 cases, the patient with TBI receiving care was a son or daughter who had been single before the injury and the patient’s siblings were already adults, so the parents did not have to worry about a large financial expenditure. In addition, caregiving parents were of an income-earning age. In two of the cases in which the patient receiving care was the caregiver’s husband, the patient was around the age of retirement and had already prepared savings for old age. The remaining three cases were receiving workers’ compensation.
Several categories were identified in this study that were not reported by Karpman and colleagues, including spending time with the patient with TBI and understanding invisible disabilities, evaluating nurses and medical professionals’ handling of the case, and hoping for better understanding and creation of an appropriate response system for traumatic brain injuries. One of the greatest barriers to treating TBI in Japan is that the disorder is inadequately understood by healthcare professionals. Stansfield (1991), who studied the families of patients with comas caused by TBIs, identified the following four themes based on the families’ experiences in the week following hospitalization: visiting the patient, the role of nursing staff, the role of physicians, and perception of recovery. The role of nursing staff had four subthemes: (1) nursing duties (busy, organized, and efficient, occupy a position close to patients), (2) leaders, (3) information suppliers, and (4) caring and other behavior. The role of physicians included diagnosis/treatment and explanation of the medical condition. In Stansfield’s study, participants became aware of the roles of nursing staff and physicians by actually experiencing their intervention. Although our study found some positive evaluations of nurses and physicians, negative evaluations were more frequent, and the perception was that information provided by medical practitioners was insufficient. This suggests that because primary caregivers are forced to try to understand the real-life conditions of TBI patients without any prior knowledge of the disorder, they need more information and support from physicians and nurses. Factors contributing to this negative perception include medical practitioners (including nurses) having little knowledge about these disabilities or their treatment or experience in providing support because they have spent limited time focusing on higher brain dysfunction. Furthermore, compared to brain damage caused by cerebral hemorrhage or stroke in which the focus is fixed, there is no single trauma site in cases of higher brain dysfunction caused by TBI. This often results in disabilities that are complex. For this reason, cases differ widely in characteristics, and it is very difficult to understand the clinical condition. As Stansfield’s study notes, nurses play an integral role in the treatment of patients with TBI; however, nurses in Japan are not yet adequately performing their roles as leaders and information suppliers.
Issues Related to Nursing Support for Caregivers
A number of studies conducted in the United States have demonstrated that families have significant needs when it comes to receiving information from medical professionals (Junque, Bruno, & Mataro, 1997; Kolalowsky-Hayner, Miner, & Kreutzer, 2001; Kreutzer, Serio, & Berquiest, 1994; Serio, Kreutzer, & Witol, 1997). It is common for medical professionals in acute hospitals to offer candid explanations of their patients’ conditions. Duff (2002) reported that because medical staff at hospitals tend to express negative opinions regarding patients’ prognoses, families look to other sources other than hospitals for support and advice. On the other hand, some families use denial and repression as defense mechanisms, believing that “things will get better once the patient returns home,” and thus are unable to accept instructions provided by medical practitioners (Paterson, Kieloch, & Gmiterek, 2001). It is very difficult to subsequently restore a relationship with a patient’s family after a medical practitioner has given the impression that he or she does not understand the family’s position. Although healthcare professionals must discourage families from harboring unrealistic expectations about a patient’s recovery, physicians and nurses, particularly in acute hospitals, must also work to improve knowledge about the disabilities accompanying TBIs and their treatment, take steps to respond appropriately to the needs of patients and families, and provide information that will help families access facilities offering specialized treatment and use societal resources.
The most frequently observed category in this study was spending time with the patient with TBI and understanding invisible disabilities. Through daily living, primary caregivers monitored their own and their family members’ coping and responses by understanding disabilities accompanying TBIs. We believe that this understanding of disabilities is a key component of primary caregivers’ psychosocial adjustment process. As Paterson and colleagues (2001) have noted, because families have trouble accepting instructions and advice provided at acute hospitals, it is necessary for the medical staff at outpatient clinics to listen to families’ experiences when they come in for treatment and provide information in a way that addresses these experiences. Listening to a family talk about their living conditions can deepen nurses’ understanding of disabilities and caregivers.
Kosciulek (1994) reported that families of patients with TBI employ five coping strategies for their psychosocial adjustment: positive evaluation, acquisition of coping resources, changes of mood or pace, reduction of demands based on the disability, and acquisition of social support. Of these, they found that positive evaluation and change of mood or pace are closely related to psychosocial adjustment. In this study, caregivers who considered the coping strategies were few. The adjustment process takes time, but outpatient medical professionals must collect information about coping strategies and the stresses experienced by caregivers. They must also provide support in such a way that caregivers can adopt the appropriate coping strategies to ensure that the process is not prolonged unnecessarily.
In addition, because the number of institutions providing specialized rehabilitation therapy for patients with TBIs is limited, it is not always possible for patients to receive specialized therapy immediately following their release from acute hospitals. Patients often receive home care or visit a number of hospitals before undergoing specialized rehabilitation, so there is a need to provide continuous nursing care.
Study Limitations and Future Tasks
The focus of this survey was limited to 15 family members belonging to the Traumatic Brain Injury Association within a particular region in Japan. Fortunately, members of this association have access to many forms of social support and can view—or are beginning to view—the situation in which they find themselves and their loved ones more objectively. Because of these quantitative and background factors, the extent to which our data can represent the experiences of all families who care for TBI patients is limited. Furthermore, the familial relationships of caregivers to patients in this study were mother-son, mother-daughter, and wife-husband. Although the results from this study may contribute to an overview of families’ experiences in caregiving, it is necessary to broaden the study to include additional types of patient-caregiver relationships to provide feedback regarding nursing support.
As a result of interviewing family members providing primary care to chronic-stage TBI patients and performing content analysis of their caregiving experiences, seven themes emerged that described caregivers’ experiences: (1) spending time with the patient with TBI and understanding invisible disabilities, (2) evaluating medical professionals’ handling of the case, (3) devoting oneself to caring for the patient with TBI despite feeling psychological distress, (4) accepting the disability and constructing a care system, (5) seeking out and participating in specialized treatment (rehabilitation) for TBIs, (6) hoping for better understanding and creation of an appropriate response system for TBIs, and (7) making efforts to influence people around the caregiver and those in similar circumstances to promote deeper understanding of TBIs.
Two of our themes were distinct from those identified in previous studies conducted in other countries examining caregiver experiences: evaluating medical professionals’ handling of the case and hoping for better understanding and the creation of an appropriate response system for TBIs. These themes underscore that caregivers and healthcare professionals in Japan face some significant challenges in treating patients with TBI, including a lack of knowledge about higher brain dysfunction among medical professionals and nurses and an inability to appropriately respond to these situations.
The results of this study suggest that to provide support to families of TBI patients, nurses must (1) enrich their knowledge of higher brain dysfunction; (2) listen to the families talk about their actual living situations, stress perception, and coping strategies; and (3) provide information that is appropriate to a family’s circumstances and encourage the use of appropriate coping strategies.
We would like to offer our sincerest thanks to the Japan Traumatic Brain Injury Association and all its members for their cooperation with this study.
About the Author
Fumiyo Ishikawa, MS RN, is a professor at the School of Health Sciences, Tokyo University of Technology, in Nishikamata, Ota-ku, Tokyo, Japan. Address correspondence to her at firstname.lastname@example.org.
Sumie Suzuki, PhD RN, is a professor in the Department of Nursing at Kokkyo Medical University in Tochigi prefecture, Japan.
Akiko Okumiya, PhD RN, is a professor in the Department of Nursing, Sapporo Medical University in Sapporo, Japan.
Yasuko Shimizu, PhD RN, is a professor in the Division of Health Sciences at Osaka University in Osaka, Japan.
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