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Journal of Neuroscience Nursing:
Then & Now

When a Family Member Has a Malignant Brain Tumor: The Caregiver Perspective

Schmer, Carol; Ward‐Smith, Peggy; Latham, Sue; Salacz, Michael

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Author Information

Questions or comments about this article may be directed to Carol Schmer, BSN RN, at She is a doctoral candidate in the School of Nursing at the University of Missouri‐Kansas City, Kansas City, MO.

Peggy Ward‐Smith, PhD RN, is an associate professor in the School of Nursing at the University of Missouri‐Kansas City, Kansas City, MO.

Sue Latham, RN, is the director of research and compliance at the St. Luke's Cancer Institute, Kansas City, MO.

Michael Salacz, MD, is a neuro‐oncologist at the St. Luke's Cancer Institute, Kansas City, MO.

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The incidence of primary malignant brain tumors has remained stable over the past 10 years, with median survival reported as 12 months. Once the patient has been diagnosed, providing care for him or her is primarily performed by family members. Although previous research has documented the stress, depression, anxiety, and burden associated with caregiving, when these conditions occur is not known. The purpose of this study was to explore the caregiver perspective of providing care while the patient was receiving chemotherapy as initial treatment for the disease. Using phenomenological techniques, data were obtained from semistructured interviews with family caregivers and self‐disclosed demographic data. Each interview occurred while the patient was receiving treatment; all patients were within 6 months of initial diagnosis. Interview data were analyzed using Colaizzi's method, which allowed themes universal to the participants to be uncovered. Interview data from 10 participants provided saturation and identified three themes: (a) the diagnosis of a brain tumor is a shock; (b) immediate family role changes occur; and (c) there are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor.

The incidence of primary malignant brain tumors in the United States was estimated at 20,500 new cases in 2007. This means that approximately 11,170 males and 9,330 females in the United States were diagnosed with a primary malignant brain tumor in 2007 (Jemal et al., 2007). These figures have remained stable over the past 10 years, with the exception of those older than 85 years of age (Davis & McCarthy, 2000). The increase in this older age group is thought to be a result of our aging population (Deorah, Lynch, Sibenaller, & Ryken, 2006). The most common primary malignant brain tumors arise from astrocytes and are termed astrocytomas. A grade III astrocytoma is also known as an anaplastic astrocytoma. A grade IV astrocytoma is known as a glioblastoma multiforme. Brain tumors are the second leading cause of death from neurological disease in adults in the United States (American Cancer Society, 2007).

There have been no significant advances in the treatment of primary malignant brain tumors over the past 25 years, with all treatments presently considered palliative. Without treatment, the mean length of survival from this disease is 3 months. Standard treatment consists of surgery, radiation therapy, and chemotherapy. The median survival rate for glioblastoma, even when treatment is provided, is reported to be about 12 months. Fewer than 24% of patients with grades III or IV primary malignant brain tumors survive 2 years, and fewer than 10% survive 5 years (Bruce & Cronk, 2006).

These dismal statistics, coupled with the knowledge that contemporary treatment has done little to improve longevity, may leave the caregiver with feelings of despondence, distress, and hopelessness (Osse, Vernooij‐Dassen, Schade, & Grol, 2006). The neurological deficits that accompany a primary malignant brain tumor necessitate physical or psychological assistance, or both, at some point in the disease process. Caregiver‐burden research has been performed within the populations of Alzheimer disease (Karlin, Bell, & Noah, 2001), oncology (Kozachik et al., 2001) and post‐heart surgery (Halm, Treat‐Jacobson, Lindquist, & Savik, 2006). These results indicate that the responsibility of caring for a loved one with a life‐limiting disease is overwhelming; the family is expected to provide most of the care these patients require. However, there is a paucity of literature that explores caregiving, specifically caregiver burden, among the population of people with family members who are within the first 6 months of treatment for a primary malignant brain tumor. Phenomenological research methods state that when exploring an area in which little research is available, describing the experience from the beginning provides a foundation for future research and development of interventions (Patton, 2002). The purpose of this study was to explore, from the caregiver's perspective, the effect that caring for a family member with a brain tumor has had on his or her life.

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Theoretical Perspective

There is little research that explores the experience of caregiving from the time of diagnosis or during the initial treatment phase of a terminal illness. Houldin (2007) explored the experience of family caregivers of patients newly diagnosed with colorectal cancer and identified themes of total disruption of their lives and trying to keep things as normal as possible for other family members. A review of the literature found research does exist that describes the end‐of‐life burden in caring for unresponsive patients (Bruera et al., 2003), but no research was located that explored caregiving for the patient with a malignant brain tumor during the first 6 months of treatment. The neurological symptoms that frequently accompany this diagnosis, together with fatigue associated with chemotherapy, result in most healthcare professionals recommending that the patient identify a primary caregiver.

Several theoretical perspectives have been used to explore a healthcare phenomenon from the perspective of the caregiver. Based on a review of the research literature, Sales, Schulz, and Biegel (1992) determined that for individuals caring for a family member with cancer during any time of the disease process, two variables were capable of predicting psychosocial problems. These variables were (a) the objective factor of the illness itself, and (b) family context variables. Objective factors included the severity of the illness, receiving the diagnosis of cancer, and the distress experienced by the family member with cancer. Family context variables identified by Sales and associates included age, gender, health of the family caregiver, and previous caregiver psychological problems. When combined, these variables were capable of determining the degree of family strain present; thus, they were predictive of psychosocial problems occurring among family caregivers.

Research by Bruera and colleagues (2003) documented individual perceptions of discomfort when a family member with cancer was near death. This research was developed based on the premise that the family's experience during the palliative care phase of an illness affects their ability to function during bereavement. These results support previous research, which noted that when family members observe suffering, they experience more suffering than the patient. Although the results of this study cannot confirm the extent to which caregivers will experience psychological problems after the death of their loved one, these data strongly suggest that when neurological decline occurs before death, the risk of psychological problems for the family members is increased. Data are not available that articulate when caregivers become at risk for psychological problems as a result of caregiving responsibilities, yet the results of Bruera and colleagues denote that they are present at the end‐of‐life phase. Clinical junctures that correlate with caregivers becoming at risk have yet to be identified, and further research is needed.

The recent palliative care movement in the United States has resulted in an identification of caregiver needs, concerns, and programs (Institute of Medicine, 2007). Precepts of palliative care have been developed by the Task Force on Palliative Care (1997), which address the personal needs of those who provide care only during the palliative and endof‐ life phases of an illness. These precepts do not address the needs of the caregiver when a family member is within the first 6 months of treatment for a primary malignant brain tumor. The uniqueness of this disease trajectory and the associated neurological deficits result in these caregivers being vulnerable to physical or psychological conditions, or both. The purpose of this study was to begin to address this gap in our knowledge and obtain data, directly from the individual undergoing the experience, from which interventions and programs may be developed.

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Once institutional review board approval was obtained, potential participants were identified through routine weekly patient conferences held at the study site. Any caregiver of a patient with pathological confirmation of a primary malignant brain tumor who was within the initial 6 months of treatment at the study site was eligible. This time frame was chosen for three reasons. First, it allowed sufficient recovery from the initial diagnostic procedure. Second, the family member's health status would most likely require the caregiver to provide some type of assistance with activities of daily living. Last, these family members were receiving treatment and were not considered to be in the terminal stage of this disease process. Caregivers needed to be able to read and converse in English, be willing to participate, be available for data collection, and, in the opinion of any healthcare provider at the study site, not be at risk for having the study participation result in psychological trauma. Although no specific guideline was used to determine psychological risk, exclusion criteria prevented any person from study participation if any member of the healthcare team expressed concern.

A nurse coordinator at the study site initiated solicitation for study participation during a routine office appointment. The study purpose was explained to each potential participant prior to securing consent. Each participant was told that study participation would require approximately 1 hour and could elicit psychological distress as the result of talking about a potentially emotional topic. All participants were assured that they could cease study participation at any time, without impacting the care that their family members were receiving. Policies at the study site provided methods for psychological referrals, if required. In addition, the study site served as a clinical setting for master'sand doctoral‐level psychology students to provide psychological counseling. At the conclusion of each interview, the study participant received $50 in cash. This incentive reimbursed each participant for his or her time and was meant to defray costs associated with study participation, including parking, travel, and meals. If the caregiver expressed an interest in participating and the patient verbally agreed that participation was acceptable, written consent was obtained. The consent included self‐disclosing contact information, which was used by the researchers to schedule a time and place for each interview.

The diagnosis of a primary malignant brain tumor and subsequent treatment resulted in family role changes for both the patient and the caregiver.

Using a phenomenological approach, data were collected until saturation was obtained. Each participant was an adult who was the self‐identified caregiver of a family member undergoing treatment for a primary malignant brain tumor. All interviews occurred at the study site, in a private conference room away from the treatment area. Data were collected while the patient was undergoing a procedure such as a magnetic resonance imaging (MRI) scan or being prepared for a chemotherapy treatment.

Semistructured interviews conducted with caregivers were recorded on audiotape. The global research question for each interview was, “Tell me what your life has been like since your family member has been diagnosed with a malignant brain tumor.” Follow‐up questions probed what it was like to care for this person and clarified responses. This allowed participants to fully explain their thoughts, feelings, and perceptions. Probing questions included “Tell me more about that” and “How did that make you feel?” or “How is this different since your family member has been diagnosed with cancer?” Qualitative research methodology requires that data be collected until the participant states that he or she has no more to say (Kvale, 1996). Interview times ranged from 35 to 90 minutes, with a mean time of 42 minutes.

Interview data were transcribed verbatim, and all identifying information was removed prior to analysis. Colaizzi's (1978) phenomenological technique was used to analyze the data. Interview findings and the study summary statement were validated with seven of the participants, each of whom volunteered to read and critique the summary statement. Each participant validated that it did reflect his or her experience.

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Once study activities commenced, enrollment continued until interview data revealed no new ideas, and saturation had occurred. This is consistent with phenomenological research methodology as outlined by Patton (2002). Data saturation for this study was apparent by the ninth interview, with an additional interview performed to confirm saturation. Thus, 10 family caregivers of patients within the first 6 months of treatment for a primary malignant brain tumor provided data. These individuals self‐described themselves as spouses (n = 7), daughters (n = 2), and a sonin‐ law (n = 1). Each stated he or she was the primary caregiver of a family member who had received a pathological diagnosis of a malignant brain tumor and was within the initial 6 months of treatment. A surgical biopsy was performed on two of the patients, six patients had their tumors surgically debulked, and two others had undergone multiple surgical procedures.

Following the steps outlined by Colaizzi (1978), each transcript was read and reread by both researchers. Data analyses were performed separately by both researchers, and themes were developed through mutual agreement. Each researcher extracted significant statements from each interview, then combined significant statements apparent in all interviews. These significant statements were then formulated into themes, identifiable within each interview and used to develop a fundamental description of the experience. Reviewing these significant statements allowed the researchers to identify universal themes. Interrater agreement for the significant statements was initially 90%, with theme labeling performed using the participants' own words. Once these themes were identified, three volunteer study participants were contacted to review the findings. These participants provided validation to the study results and stated they were reflective of their thoughts, ideas, and experiences.

Three themes emerged from the data. All themes were mentioned within each interview, with several exemplars provided by each participant. The themes identified were (a) the diagnosis of a brain tumor is a shock; (b) immediate family role changes occur; and (c) there are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor.

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The Diagnosis of a Brain Tumor Is a Shock

All participants used the word shock when explaining their feelings upon hearing the diagnosis. Although not related to caregiving, interview data reflect that no participant anticipated, yet all were aware, that their role changed immediately as a result of this diagnosis. The symptomatology resulting in seeking healthcare was urgent for six of the patients, with four participants explaining that the indications causing the patient to seek healthcare were more insidious. Despite the presence of symptoms over a period of time, these participants stated that a brain tumor was never considered, and the diagnosis was a shock. Six participants mentioned seizures or strokelike symptoms as their first indication that there was something medically wrong with their family member; whereas the other participants expressed feelings that their family member was depressed, drinking, or becoming demented. Shock was described by two participants, with one stating, “I thought she was drinking … she would ask me the same question every 5 minutes. No one thought there was a brain tumor until they did the scan. That was a shock.” The other explained, “I thought he had a stroke and I thought, ‘Okay, rehab will make things better.’ When they said a brain tumor, and it was cancer—I was shocked. It was a relief to know what was wrong, because now they can treat it.”

Another participant spoke about shock, explaining, “After the initial shock of the diagnosis, you bargain toward a new normal. You try to gain normal again and hope it is close to what it was. Sometimes I pretend.”

Shock appears to remain a constant companion to these participants, which is explained by another participant:

I thought maybe they were going to tell me he had Guillain‐Barré syndrome or maybe Parkinson disease. A brain tumor was never anything I thought up… a total shock. I really thought they were wrong. Up until the first day of radiation therapy, I thought they were wrong. You cannot imagine how shocked I am that we are here, doing this. It sometimes feels like a dream … a bad one … but a dream.

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Immediate Family Role Changes Occur

The data reflect that the diagnosis of a primary malignant brain tumor and subsequent treatment resulted in family role changes for both the patient and the caregiver. Although each participant expected some change to occur, they were astounded at the quantity and depth of the changes. Spouses verbalized more change than nonspousal caregivers. Family role and relationship changes were described by two spouses: “We have a different relationship. I've lost my partner and I've lost equality, and that is what is hardest for me” and “It's just never going to be like it was.”

The depth of the lifestyle changes was challenging for caregivers. As a result of the patient's decreased ability to concentrate or stay focused on a task, some participants provided examples that described frustrating experiences. One participant explained, “He cannot stay focused on a task. I am becoming a nag, but cannot figure out another way. It's just lucky that he does not remember—but I do, and I feel terrible about what I have to do.” Another participant stated, “She has been depressed. I feel helpless,” while a third participant said, “I get edgy sometimes and upset.”

Other changes for participants included adjusting to changes in the patient's physical appearance: “She still looks good … with no hair and whatever, she still looks healthy.”

Physical changes that occurred also involved not being able to perform some of the activities of daily living. One participant explained, “I try to let him dress himself, but it takes all morning and he gets it wrong. People will think I am not taking good care of him if he looks a mess, so I have to dress him and help him eat—to keep the food off his clothes and his face.”

When the ability to perform activities of daily living was impaired, the caregivers did not perceive providing assistance as a burden, or as something that was resented:

He can dress and feed himself. He gets tired easily and does not drive. But those are nothing I cannot handle. His parents are around and are happy to help—but I can do it. I am happy to do it, and some of the funny stuff that happens—like slipping off the toilet seat—actually makes us closer.

Another caregiver explained, “But caring for him is something I will do—it is not a burden,” and a third stated, “Caring for her is not a burden.”

Other lifestyle changes involved family members rearranging schedules to limit the time the patient spent alone and to be present during physician appointments. These schedules were both creative and complex:

I don't live far, so I go there in the morning and make sure she is up, fed, and has taken her medication. My sister only works in the morning, so she is there in the afternoon. My brothers never show up. Then, after dinner, both my husband and I drive back over there … just to check on her again. It's probably more for me than for her, but I just sleep better if I check on her again.

Another caregiver had this to say:

His parents usually come to the doctor's appointments with us, and they are always here when he gets chemo. This way, they hear the information directly and understand the decisions we are making. They do not interfere … they really are trying to be helpful. It's mostly supportive.

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There Are Psychosocial Effects for the Caregiver, His or Her Family, and the Person with the Brain Tumor

The effect of caring for a family member with a primary malignant brain tumor resulted in psychosocial effects for the caregiver, his or her family, and the patient. The universal distressing situation surrounded disclosing the diagnosis. Not telling the patient of the diagnosis was a conscious decision for one participant. This participant detailed how the family kept this information from the patient for some time, in an effort to minimize the psychosocial effect, saying, “Why tell her? What was the harm in letting her live in denial for awhile? The only reason she knows is because my sister kept using the word cancer all the time. I am not sure when she figured it out. She has said nothing.”

Telling others of the diagnosis was described as difficult, painful, and fraught with emotion. One participant stated that he or she purposefully did not tell other family members of the diagnosis. This information was kept from children on the pretense that they would not understand it and from other family members as a method to provide some privacy and make treatment decisions without excessive interference. One caregiver explained, “If people ask directly—we answer. Otherwise, we leave it alone. Our families know and some close friends. But … people tend to just hang crepe, and we don't need that right now. He is doing really well, and it's really nobody's business.”

Support from a variety of sources was mentioned by the participants. Eight of the participants mentioned that members of the healthcare team were always available and willing to listen, return phone calls, and “explain and re‐explain and re‐explain as often as I needed it.” Family members, friends, church acquaintances, and coworkers who knew the diagnosis were perceived as helpful. This help was described as “sounding boards” and being there to provide physical care, when needed.

When asked directly, none of these participants stated they were participating in a support group. On further inquiry, one participant stated that the amount of activity required for treatment left little time or energy to include this activity. This participant also stated that the limited survival time associated with the diagnosis and the possibility of death increased the desire to spend all available time with the family member. This participant wanted to spend whatever time was left participating in family‐centered activities and felt that attendance at a support group would focus on death and dying.

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The results of this study support the previous work of Houldin (2007) and identify additional themes relevant to the caregiver of a family member undergoing initial treatment for a malignant brain tumor. The work of Roloff (1995) provides personal stories of people diagnosed with brain tumors. These stories provide anecdotal data that describe living with and dying from a brain tumor. The participants interviewed by Roloff described their family members as dying twice. The first death occurred during treatment, as neurological function declined, resulting in a loss of personhood. Even with therapeutic treatment, neurological symptomatology is present, progressive, and permanent. The second death was the physical death, and though hopefully not occurring during the first 6 months of treatment, the possibility existed, which was a reality ever present in their lives. The data from the present study support this information. The participants in this study stated that family functioning was altered once the family member was diagnosed with a malignant brain tumor and remained altered through the first 6 months of treatment.

The experience of having a family member diagnosed with a primary malignant brain tumor results in numerous changes for the caregiver during the first 6 months of treatment. These changes accompany the neurological deficits associated with the diagnosis, the rigor and effects of initial treatment, and the overall prognosis for the family member. Yet these participants were resourceful, competent, and willing to provide care for their family members. The caregiver's contribution should be supported, and caregivers should be included in plans of care.

Sherwood and associates (2006) demonstrated that caregivers of persons with primary malignant brain tumors experience depression, fatigue, and health issues. Our study participants did not mention these issues. However, the median time since diagnosis for participants in Sherwood's research was 19 months. It may be that these problems arise later than the 6‐month time frame used in this study.

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Implications for Nursing and Future Research

The findings of this study add to the knowledge base for healthcare professionals regarding the experience for a family caregiver of a patient with a primary malignant brain tumor. Although little physical care is necessary, these family members stated they were capable and willing to provide care. They did not perceive caring for the family member as a burden. The first 6 months of treatment may be a low physical‐need burden phase of the illness. However, these participants described psychosocial changes, which nurses should address. Possible interventions include the suggestion of implementing role changes within the family structure and methods to do that, such as asking family members to be physically present, providing techniques to cope with frustration, and connecting caregivers with support services. These psychosocial changes may place caregivers at risk for physical or psychological conditions, which may directly impact their ability to provide the physical caregiving necessary later in the disease process when end‐of‐life is present.

Longitudinal research can assist in the identification of when these needs change and identify when interventions that provide assistance are appropriate. The identification of when or if providing care becomes a burden, as perceived by the individual providing that care, is critical. To suggest the use of professional caregivers or extended care placement before the caregiver is ready may be perceived by the caregiver as a loss of confidence from the healthcare professional. In contrast, a delay in recommending assistance may result in avoidable stress, anxiety, and health concerns for the caregiver. It also places the patient at risk for preventable complications.

Participants described experiencing shock at the time of diagnosis, with thoughts that there was another neurological condition occurring instead. The events surrounding the initial diagnosis were described as a roller coaster. Although the diagnosis of a malignant brain tumor is nothing anyone would wish for, these participants indicated that knowing what was wrong was necessary for any treatment to begin and was preferred over not knowing. Nurses must be prepared to assist families in dealing with the shock so they may move forward appropriately.

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There were several limitations to this study. Participants in this study were recruited from one study site, located in an urban Midwestern city. Each participant resided within a 25‐mile radius of that city. These data are not reflective of the experiences of a caregiver who resides in a rural setting. Another limitation is that data were collected at one time interval, during the first 6 months of treatment. Longitudinal data, or data collected at a different time interval, may reveal additional or alternative perspectives. Longitudinal studies need to be performed that identify if and when caregiving perceptions change. Initially, the individual with a primary malignant brain tumor may require little physical care. However, these individuals have neurological deficits and are at risk for harm to themselves or others. As the data from this study indicate, these individuals require little physical assistance, yet are unable to function, or should not be allowed to function, in their previous roles. Another limitation of the study is that only one family member was allowed to provide data. Different family members within the same family may have differing perspectives, which were not captured in these data. In addition, participants in this study included only family members of patients who were receiving chemotherapy. Patients for whom chemotherapy was not a treatment option, or those who elected not to receive chemotherapy, were not eligible for study participation. Finally, each participant received financial compensation upon study completion to offset costs associated with study participation. It is possible that the financial incentive could have coerced the caregivers toward participation.

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The results of this study describe the caregiver experience when a family member is receiving the initial 6 months of treatment for a primary malignant brain tumor. The data represent a new area of research and identify that although caregiver burden is not present, the diagnosis is unexpected, role changes within the family structure do occur, and psychosocial effects are apparent within this time frame. These results are different than results from research performed later in the disease trajectory, when end‐of‐life is apparent and reflect that a change in caregiver needs does occur between the time frame of this study and other published research.

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This study was funded through a research grant from the Saint Luke's Foundation.

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