Being a Brain Tumor Patient: A Descriptive Study of Patients' Experiences.
The experience of being a patient with a brain tumor is emotionally arousing. Although the medical outcome for these patients has improved over the past years, the uncertainty inherent in the prognosis can cause the patient to experience overwhelming anguish and fear of death. To be able to plan individual treatment scenarios and relevant after-care, nurses need information about brain tumor patients' experiences of their illness and how they feel about their care, including psychological support and information, at the different stages of the illness. The purpose of this study was to describe the experience of being a patient with a brain tumor and the perception of the care received during an inpatient episode in a neurosurgery clinic of a university hospital.
The ultimate aim was to produce information that could be used to improve the quality of the care for patients with brain tumors.
Thus far, no nursing research has been done in Finland on the experience of being a patient with a brain tumor; several international studies, however, have been conducted.[6,13] During their stay in hospital, patients experience a variety of factors that limit their daffy activities.[9,13] On discharge, brain tumor patients find their illness to be something much more than merely the sum of their symptoms. They are worried about such matters as their ability to resume work, their general health status, the availability of support and their ability to control mood fluctuations.
These concerns are similar to those of Finnish cancer patients.[8,9,12,18,19,20] According to Lindvall, patients' subjective experiences of their illness are of crucial importance. Kan, who analyzed patients' experiences of being informed of their cancer, pointed out that more than half of the patients actually appreciated hearing the diagnosis. However, they would have wanted to hear more about their own illness and to talk about the emotions aroused by it. According to Salmi et al., cancer patients expressed expectations and wishes about the success of treatment, the adequacy of information, and the continuity of the doctor-patient relationship. The time needed to verify the diagnosis, the time spent waiting for treatment, and the time getting answers to questions about their diagnosis and illness were especially important for cancer patients. Timonen and Sihvonen point out that cancer patients feel a pressing need for information concerning their after-care.
According to Davis and Adams-Greenly, inpatients experience their care as an entity (i.e., a sum of many different factors) and often interpret it in terms of small details, such as how they are observed and treated by all staff members. We therefore use the term care in this paper to cover both nursing and medical treatment. The views of being an inpatient evolve through a juxtaposition of expectations and experiences. The patients' assessments of care are also influenced by their life situation as well as the perceived need for and the importance of care.[14,21]
Answers were sought via open-ended interviews. The following question was posed: How do patients with brain tumors describe the experience of being an inpatient and perceive the care provided in a neurosurgery clinic before and after surgery?
Eight brain tumor patients, four women and four men, volunteered to participate. They were in the clinic at the time of recruitment and were to be admitted for the first time because of a brain tumor. The tumor type was not known at the time of the interview. The patients were oriented to time and place, capable of oral expression, and ages 30-62 years.
The material was collected by using thematic interviews, because the aim was to have patients describe the experiences of being a patient and the perceptions of care provided during the inpatient episode. According to Hirsjarvi and Hurme, the purpose of thematic interviews is to achieve natural rather than formal communication. Participants described their experiences as patients with brain tumors, their participation in decision-making about care, and their perceptions of care, including psychological support and information, both before and after surgery.
Altogether, 16 interviews were conducted on the day preceding the surgery and 3-7 days postoperatively. The interviews were conducted by two clinic nurses who had been trained in interviewing for research purposes during their nursing education and postgraduate studies. The interviews lasted for 30-60 minutes and were tape-recorded and transcribed verbatim. The authenticity of the material was checked immediately after the transcription.
The data were analyzed by using qualitative content analysis. Utterances (i.e., minimal semantic entities) were used as units of interpretation. The material was inductively analyzed. At the initial stage, the researchers "asked" the material what it could reveal about the experience of being a brain tumor patient and the perception of care of such patients. After that, the original utterances (such as "they have time to listen and support" and "they even have time to talk about things that I feel concerned about") were reformulated as reduced utterances, which were used to compile checklists for further analysis. The reduced utterances were then dustered into specific categories (such as received psychological support) on the basis of their similarities and differences, and the subcategories were combined to make more abstract categories (such as psychological support). The abstract categories, in turn, were combined to make conjunctive categories (such as care from the brain tumor patient% viewpoint).
For ethical questions, the principles proposed by Latvala et al. were applied. Prior to participation, the patients were told of the research project and its aims and asked for their written consent. The informants' identifies were kept confidential, and the researchers had a respectful attitude toward them. Veracity was the aim during the data analysis and report writing.
Two conjunctive categories of the experience of being a patient and the perception of care received were inductively constructed: experiences of being a patient and experiences of care.
Being a Patient
Preoperatively, a few of the patients had a fearless and calm attitude toward their illness and placidly waited for their surgery. One patient said he was relieved to learn about the cause of his symptoms. Two patients had acquaintances with brain tumors. The fact that the acquaintances had survived the disease made them confident about surviving their disease. The patients even used humor while talking about their brain tumors. Life experience and self-knowledge contributed significantly to a calm attitude toward the illness:
You know, I somehow feel that I needed to pause at this stage ... that my life experience helps me to reconsider my life values.
Some patients felt fearful and depressed about their brain tumor, and the diagnosis had been a shock to them. They were afraid and worried about their ability to cope with the possible deficits after the operation. One patient had a tumor in the motor control part of the brain. She said there was nothing she could do about it but suffer. One patient feared for her psychological normalcy after the operation. She described her fears as follows:
... But then, all of a sudden, I realized they will have to bore the skull bone, or whatever, to make a hole in it ... I'm afraid of not being normal anymore ...
Being a patient after the surgery was characterized by a change in body image, a need to recover from surgery, and concerns about the future. The patients were surprised to find their head shaven and the surgical wound so big:
First of all, this big wound and then that they had shaved so much of my hair. I had to stop and wonder if it was really me.
Some patients had trouble speaking, which was a shock--something they had not been prepared for. The patients were also perplexed about their symptoms of unilateral hemiplegia and thrombosis.
The brain tumor patients found that the serious illness had caused them to pause and reconsider their life values. When discharged, they wanted to walk out of the hospital themselves and to resume work as soon as possible. They were also worried about the possible recurrence of the tumor. After the surgery, the most important thing was to manage and get along with oneself and to believe in the future:
Somehow I think that there's still life ahead. That's what I hope, though you can never know. I think that if I just give up, there's no hope.
Experiences of Care
The patients thought that the care they received was matter-of-fact and kind. They also said that they had been informed well, received psychological support, and been allowed to participate in decision making about their care.
Although most patients thought that the care was friendly, one patient thought that the nurses' lack of time was an indication of unfriendly conduct. He felt that he did something wrong when he had to summon a nurse by ringing the bell:
You somehow get the impression that they're too busy ... and the women are cross ... they don't like us to ring for them.
Some patients also felt that they were expected to have their meals too quickly. This made them feel pressed for time. They also had the same feeling when talking to the doctors, as if the doctor's visit was just a march past the patients.
Information about the brain tumor and its treatment was received from the nurses and doctors of the neurosurgery clinic as well as from nurses in the intensive care unit and other wards and the referring hospital. The patients wanted to be the first to be told about their treatment:
I would like to hear and be told what's going to happen, I mean they should tell me first.
Although most were content with the amount of information they had received, one patient had not received any information from the nurses before the surgery:
They only said that the nurses would come in the evening but they didn't come.
After surgery; patients wanted to know more about what had happened during the anesthesia and the operation. They also wanted to know how long it had taken for the brain tumor to grow, whether it was hereditary, and how it would affect their lives in the future. Some patients were also uncertain about after-care, especially about rehabilitation and radiotherapy:
They're going to give me radiotherapy, but how are they going to find the right place? Are they going to stick rods in my ears or what?
Some patients were content with the amount of psychological support they received, while others would have wanted more support, especially after the surgery. The patients expected psychological support from both the doctors and the nurses, and it was difficult to find someone to talk to about their illness:
It seems that they have a lot of staff turnover, I mean nothing is really permanent.
The desire to participate in decision making about their care varied among the patients. Some wanted to delegate the decision making about their illness to the experts:
I know nothing about nursing and I don't want to decide about this. I want the experts to make the decisions.
The patients who wanted to participate in the decision making about their care wanted to offer input about pain relief, meal arrangements, choice of room, and whether or not to have radiotherapy. The patients pointed out, however, that they had to be able to give nursing and medical staff members adequate reasons for their opinions. The patients wanted the staff members to give them alternatives to choose from:
I naturally wanted to have my say. If there are alternatives, I should be told about them.
On the basis of their experiences, the patients wanted the staff members to have more time for them. The important thing was not efficiency; but time for the patient to talk about his or her illness:
It would naturally be important to give us confidence ... as the psychic condition is really important at this stage, to make one regain balance.
Reliability of the Results
As in all qualitative research, we did not aim at generalizability, but tried to elicit only qualitative information. The brain tumor patients who participated in the study were interviewed twice, because it is possible to have different experiences of being a patient at the different stages of care. Because the two interviewers were nurses working on the ward, we should also allow for the possibility that the patients, while responding to the questions, may have wanted to please the interviewers. However, one of the interviewers was not working on the ward at that time and the other was attending a continuing education course. An effort was made to enhance the reliability of the interpretations by presenting direct quotations from the patient interviews. Moreover, the material was analyzed separately by all three researchers to enhance face validity. The three analyses did not differ significantly with regard to substance, and consensus was reached after a discussion of details that initially had been interpreted differently.
It was also important here to consider pragmatic validity, which means that the results can be utilized in developing practical work. Our findings on the experience of being a brain tumor patient were used to direct care in the unit, because it allowed us to take into account the patients' perspective, such the need to provide individualized care specific to patients' wishes. This study is also limited by the time frame, because brain tumor disease is a long-term illness.
These findings are mostly in agreement with those of previous cancer studies. As with our findings, some previous studies[8,18] have reported emotional arousal upon the onset of a serious illness. Although the patients in this study suffered from the same clinical entity (i.e., brain tumor), their experiences of being a patient were different.
Some of the patients were fearless and calm, while some others were fearful and depressed. Despite this difference in attitude, they all expressed a need to talk about their illness. Nurses responsible for the care of brain tumor patients should be especially sensitive to the patients' emotional states and their needs. The fearless and calm patients also need time, because their placidity may cover a repressed emotional response to the brain tumor. Like Fox, we also found that brain tumor patients felt their illness to be more than a mere sum of the symptoms, because they ended up reconsidering the basic values of their lives. After the surgery, the patients were perplexed by their bodily changes, surprised about the postoperative complications, and afraid of the possible recurrence of their disease. The importance of psychological support and information was especially obvious at that stage. Because the medical diagnosis concerning the malignancy of the tumor had not yet been confirmed at the time of the interview, the patients also needed support for tolerating their uncertainty about the disease.
With the exception of one patient, the brain tumor patients thought that the care they received was matter-of-fact and friendly. They were also content with the amount of information they had received, especially before the surgery. One patient, however, would have wanted more information before the surgery, and most patients said they would have wanted to know about the procedures done during and after the surgery.
Complications were considered unanticipated and alarming, as in the report of Rabbitt and Page. This finding explains why these patients wanted more information after the surgery and supports Bohan's report, which suggests patients should be given as much information as possible before surgery. The difference between our findings and Bohan's suggestions may be explained by cultural differences and by the fact that the unit where this study was carried out had made a special effort to develop preoperative medical counseling. The patients and their families were invited to a special session at which they were able to ask questions about their illness.
The willingness to participate in decision making about treatment varied among patients. Some were willing to delegate decision making to the experts, while others wanted to participate and choose between alternatives. According to our findings, brain tumor patients are most concerned about their personal future and after-care, a finding also reported by Fox and by Timonen and Sihvonen. Patients especially wanted information on their possibilities for managing in daily life after their discharge from the hospital. Successful discharge is necessary for adequate postoperative coping at home. A patient who tries to resume his or her daily routines, often with deficient vital functions and an altered body image, needs encouragement and realistic discussion to be able to meet the challenges that follow the inpatient episode. It would, however, be good to avoid being unrealistically optimistic, because we do not currently have adequate methods to treat all brain tumor patients. A serious illness always makes a person pause, and the patients want the staff members to pause and share the emotions that have been aroused in them by their illness. The brain tumor patients in this study wanted to minimize the atmosphere of urgency and hurry throughout their stay in hospital. They especially felt the doctor's rounds to be negative in this respect, a finding also pointed out by Salmi et al.
Our findings provide a basis for developing the care of brain tumor patients from the viewpoint of the patients. The major challenges presented by the patients were the needs to minimize the feeling of urgency and hurry, to increase psychological support, and to give more postoperative information. On the basis of these findings, the previous primary care principles applied on the ward were elaborated further: Each brain tumor patient is now assigned a primary care team of one doctor and one nurse. A challenge for further research is to determine whether this multidisciplinary approach helps to alleviate the feeling of urgency and hurry and enhances the patient focus, the amount of psychological support, and the postoperative availability of information in the care of brain tumor patients.
The brain tumor patients were willing to participate in decision making about their care. They trusted the professional skill and competence of the nurses. However, the patients needed more support than they received in order to participate in care delivery.
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Questions or comments about this article may be directed to: Irja Lepola, PhD MA, PO Box 2437, 90 014 University of Oulu, Finland. Dr. Lepola is a nurse researcher interested in health promotion.
Maisa Toljamo, PhD RN, is a nurse researcher interested in health problems of chronically ill adults, their adherence to self-care, and social support.
Ritva Aho, RN, is a staff nurse in the Department of Neurosurgery, Oulu University Hospital.
Tuulikki Louet, RN, is a staff nurse in the Department of Neurosurgery, Oulu University Hospital.
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|Author:||Lepola, Irja; Toljamo, Maisa; Aho, Ritva; Louet, Tuulikki|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Jun 1, 2001|
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