Tastan, Sevinc; Kose, Gulsah; Iyigun, Emine; Ayhan, Hatice; Coskun, Halise; Hatipoglu, Sevgi
Brain tumor is a medical condition that can cause neurological symptoms such as paralysis, visual disturbance, sensory loss, changes in consciousness, memory loss, and functional loss (Janda et al., 2008; Schubart, Kinzie, & Farace, 2008; Sherwood et al., 2004, 2006). Brain tumors comprise 2% of all cancer-related tumors. Despite their low incidence and an increased rate of successful treatment through early diagnosis, brain tumors have high morbidity and mortality rates (Janda et al. 2008; Malak & Dicle, 2008; Schmer, Smith, Latham, & Salacz, 2008).
Diagnosis and treatment of brain tumor is unusual and traumatic for patients and their families. The location and size of the tumor and the neurological and cognitive status of the patient influence the type of treatment and the patient's chances of survival (Schubart et al., 2008; Sherwood et al., 2004). Surgical intervention is the most common treatment of brain tumor. Brain surgery is more frightening for patients and their families than other surgeries because the brain regulates important body functions such as respiration, motor function, behavior, and circulation (Kosgeroglu, 2006).
Brain tumor patients have oncological problems and neurological sequelae, and the care of these patients is more complicated and difficult compared to other patients (Sherwood et al., 2004). The functional changes in brain tumor patients compromise the patients' ability to perform daily tasks, including caring for themselves, and the increased workload on their relatives has a negative effect on the carers' lives (Janda et al., 2008; Malak & Dicle, 2008; Schubart et al., 2008; Sherwood et al., 2004, 2006).
There are few studies on the experiences of brain tumor patients' relatives during the diagnosis and treatment process. Sherwood et al. (2004) found that neuropsychiatric problems such as agitation, depression, and apathy in the patient along with other problems such as functional loss cause emotional problems (depression, anxiety, and fatigue) and stress the members who provide care for the patient. Thus, Janda et al. (2008) have found that brain tumor patients and their relatives need more support than do other patients diagnosed with cancer. The aim of this study was to determine and to classify the experiences of the patients' relatives during the perioperative period and home care.
This study was a descriptive qualitative study. Phenomenology is an approach that is frequently used in qualitative studies and focuses on life experiences to understand the experiences of the people related to a subject (Dowling, 2007; McNamara, 2005).
Sample and Setting
This study was performed at the neurosurgery department of a military training and research hospital in Turkey between February and March 2009. Relatives of brain tumor patients who underwent surgery at least 3 months before the study period (3−6 months) were included in the study; these relatives could speak and understand the Turkish language and were willing to participate in this study. The study was terminated when the same information was repeatedly obtained from the participants. The study sample consisted of 10 patients' relatives who met the criteria noted above.
All patients who underwent surgery for brain tumor were transferred to the intensive care unit for early postoperative care. This unit consisted of two special rooms with six beds and enabled full monitoring and postoperative care. The intensive care period depended on the postoperative clinical status of the patient. Patients with stable medical conditions were transferred to their hospital rooms within 3 days. The patients stayed in the hospital until their neurological and medical conditions stabilized. Radiotherapy and/or chemotherapy were planned according to the histological diagnosis and the patients' discharge to their homes. This period depended on the diagnosis of the patient. Permission for this study was obtained from the local ethics committee of the military training and research hospital.
The data were collected using a semistructured interview schedule (Box 1). The interviews were conducted by an investigator in a private room in the neurosurgery department, in a quiet and comfortable environment, using a voice recorder. All interviews were performed by the same researcher, who was a faculty member in the nursing school and who had experience in qualitative studies. The participants were provided with information about the study and informed that their speech would be recorded during the interview; thereafter, verbal and written consent were obtained.
The interview began with a broad, open-ended introductory question specific to the purpose of the study: "What did you feel when the operation was suggested for your patient?" As the interview progressed, the participants' statements prompted some of the investigator's questions, such as, "Could you say more about that?" and "How did that make you feel?" The investigator concluded the study by asking the participants whether they had any final comments or notes. The interviews lasted 30−45 minutes. Each participant was interviewed once. However, two further interviews with two randomly selected participants were conducted at the data analysis stage to ensure the validity of results. All the interviews, recordings, and data analysis were made in Turkish because the participants' and researchers' native language was Turkish. The English translation was made by a medical professional who speaks Turkish and English fluently.
The Statistical Package for the Social Sciences (Version 15.0 for Windows; SPSS Inc., Chicago, IL) was used for the data analysis of the demographic characteristics of patients' relatives. Analysis of the data from the interviews was carried out according to Colaizzi's (1978) analysis method as follows.
1. Three researchers who had experience in phenomenological studies analyzed the data. They closely collaborated in cross analysis to achieve consistency and agreement at each step of the data analysis and to validate the findings.
2. Interviews were transcribed verbatim from the audiotapes by the researchers. During the analysis, the participants' descriptions were read by the researchers.
3. The researchers thus gained a general understanding of the significance of the experiences. Significant statements and phrases that directly pertained to the study's objectives were then identified.
4. The meaning of these statements was formulated. The researchers undertook the following check to ensure they remained true to the data: They independently read each statement, listened to the audiotape, and wrote the formulated meaning for each statement. The researchers then compared notes, discussed any discrepancies, and made adjustments where necessary.
5. The formulated meanings were categorized into clusters of themes.
6. The results of the data analysis were integrated into a description of the experience.
7. To maintain the credibility of the data analysis, the transcripts were examined repeatedly by each researcher. The researchers worked independently to identify the major categories of the transcripts. The coding was then compared. A final validation was undertaken by asking research participants if the researcher's description matched their own experiences. Two participants were selected randomly and contacted again to read the descriptions. They agreed that the analyses accurately represented their personal experiences (Colaizzi, 1978; Wong & Chan, 2006). Each category comprised themes consisting of similar statements. The results were divided into three categories and eight themes at the end of the study (see Table 1).
Table 2 shows some descriptive characteristics of the participants. The mean age of the participants was 38 years (SD = 9.95 years). More than half the participants were women, and most of the participants were the spouses or children of the patients. More than half of the participants were on active duty, and 70% of them were at least high school graduates. According to the participants, 40% of the patients underwent cranial surgery for the diagnosis of glioblastoma (Table 3).
Category 1: Personal Feelings
This category dealt with the feelings of the patients' relatives when they learned of the diagnosis.
Theme 1. First Reactions: Shock and Fear of Death
This theme covered the patients' relatives feelings when they learned the patient had a brain tumor. Most of the participants stated that they could not believe what was happening and felt shocked when their relative was diagnosed with a brain tumor (four relatives).
"It was awful. At first we thought it was bleeding in the brain. I could not believe it and felt faint when I learnt that it was a brain tumor. I was unable to think anything."
The patients' relatives stated that they felt afraid when they learned of the diagnosis of brain tumor, and their first sensation was "fear of death." Three relatives stated that they feared losing their loved one or relative because of the brain tumor.
"We were facing death. It was a matter of life or death in the end. We could not sleep. Neither my spouse nor I could sleep. It was a very difficult decision. I was very scared of my spouse dying."
Two participants said they did not think they deserved the diagnosis when they were informed of it and protested it.
"It was very difficult. We could not believe it. We thought, 'Why us?' My mother never did anything bad to anyone. I thought a lot about why such a thing had happened to such a nice person. I did not think she deserved the tumor at all."
Theme 2. Decision for Surgery: Helplessness or Acceptance
This theme covered the relatives' feelings during the period of decision-making for surgery. All the participants stated that they thought the only way to get rid of a brain tumor was surgery. Five participants stated that the neurological dysfunction caused by the tumor affected their decision making about surgery
"My mother first began to lose strength in her right arm and then in her right leg. She also had seizures. We were afraid she would die. We accepted the surgery because we did not want her to die. We had no other option."
"He had to undergo a surgery. This was his only chance to live. He is a young man and he must have many years to live. So, we had to accept the surgery."
Theme 3. First Meeting With the Patient After Surgery: Happiness or Fear
This theme dealt with the feelings of the patients' relatives when they saw the patient just after the surgery. The patients' relatives were afraid of losing their loved one throughout the surgical period. Therefore, most participants stated that they were happy and cried when they first saw the patient after the operation (six relatives).
"I kept thinking of death until the surgery was over and I saw her. 'What if something happens during surgery?' was my fear. I could not hold back my tears when the surgery was over and I saw my mother."
Four participants said they were scared because of their relative's appearance, head bandages, and drains.
"My son looked as though he had swollen and blackened eyes from being beaten. I was very scared and screamed when I saw my son like that. I cried. It was an awful feeling."
Theme 4. Ambiguity: Anxiety
This theme dealt with the concerns of the patients' relatives during the postoperative recovery process. Some participants stated that they felt their relative had not completely recovered from the tumor because of the radiotherapy. Three of the patients' relatives also indicated their concerns about them getting healthy again.
"We received radiotherapy for 1.5 months after discharge. We were very saddened by having treatment again after surgery. We had thought the tumor would be fully treated at surgery. We did not know what would happen after radiotherapy and whether the tumor would disappear completely."
"My mother could not easily move after the surgery. She did not regain strength in her leg and arms, and there was still a problem. We did not know what we should do for the recovery."
Category 2: Management of the Changes
This category dealt with our experience of the management of changes by the patients' relatives because of brain tumor and its treatment.
Theme 1. Management of the Side Effects of the Tumor
This theme dealt with the experiences of the patients' relatives in terms of the physical care of the patients with brain tumor. Some patients' relatives stated that they had difficulty coping with the care of their patient after surgery (five relatives).
"My spouse's movements were slow after the surgery. He had difficulty when walking, eating, and using his hand. This really bothered us. We did not know what to do."
"She could not walk very well and could not use her right hand. We helped her to eat and walk around, but we did not know what her situation was. Was she getting well or getting worse?"
Theme 2. Management of Role and Behavioral Changes
This theme dealt with the experiences of the patients' relatives in terms of the role and behavioral changes of the patients because of brain tumor and its treatment. Some of the participants stated that their responsibilities increased, and the patients had difficulties with role changes resulting from having a brain tumor (such as the role of mother or spouse). One participant said that he experienced trouble because of his wife's behavioral problems.
"Inactivity, as before, gave my wife anxiety. She became very anxious because she was very inactive, depending on another person and not having the strength she had previously. She had no interest in the children. My children wanted to be with their mother, but she could not care for them. She was very anxious about this situation."
"My mother dealt with housework until my wife recovered. She also carried the children."
"The behavior of my wife annoyed me. She became aggressive sometimes. She blamed me for everything; she accused me even if anything was lost in the house."
Theme 3. Management of Care in the Home
Some participants said they experienced difficulties with the home care of their patients because of problems related to radiotherapy (two relatives).
"They were unable to remove the whole tumor. My mother was a little unhappy during the radiotherapy. She did not want to receive radiotherapy. We wondered whether the radiation would affect us as well. In fact, we were a little scared. We were always scared that my mother would have another problem due to the radiotherapy."
"At that time, my wife had nausea and anorexia. She lost weight. She should have eaten something but she could not. We slogged away in this situation."
However, three patients' relatives stated that they had no problems with the home care of their patients (three relatives).
"We did not have any problems after the discharge. Thank God my spouse is fine. Seeing him talk and walk is enough."
Theme 4. Social Support
This theme dealt with the social support the patients' relatives received to cope with the problems they faced during treatment. Most participants said they had delayed work they needed to do or took a long-term leave from their work to be able to care for their patients during the hospital period or at home. However, they also emphasized that this was not more important than their patient getting well and becoming healthy again (six relatives).
"It was very difficult. Everything was planned according to my son. We could not do anything. But we thought that it was OK as long as my child was well. It was not important even if we were in pain and could not do our work."
Most participants said they received support from family members to be able to cope with the problems experienced during the treatment period (six relatives). Some said they received the support of their friends and neighbors. One participant had also obtained psychiatric support because of inability to cope.
"We always tried to look fine in front of my mother. We did not reveal any problems to her. All of the family pulled together so that my mother got well. She had come out of major surgery without problems. What could be more important?"
Category 3: The Need for Knowledge About Managing the Disease Process
This category dealt with the information experience of the patients' relatives about events during the perioperative or postoperative periods. Half of the participants said that the information provided about the surgical complications, patient care, and home care was not sufficient (five relatives).
"They just make you sign a paper and then operate. It was going to be serious surgery. They did not provide good, detailed information. There were a lot of unexplained things. I did not know what to ask, who to ask."
"We would have liked more information about everything done to our patient and the things we would do. More could have been said about the drugs they were administering to the patient and the care."
"My mother could not move comfortably. The strength in her arms and legs had not fully returned. She gradually got better but there were still problems. We did not know if anything would bring back her former power. We were also scared to do anything."
The other half of the participants stated that the information that was provided in the preoperative period about the surgical procedure and possible complications was adequate (five relatives).
"The information provided to me was adequate. Everything was said. We knew everything that could happen. We did not experience anything other than what was said."
The diagnosis and treatment of a brain tumor is a sudden and traumatic event for patients and their families. The high morbidity and mortality in brain tumors and the need for physical and psychological support lead to negative emotional states (depression, anxiety, and fatigue) and stress for the patients' relatives. This makes it difficult for the patient and the family to accept the treatment (Janda et al., 2008; Schmer et al., 2008; Sherwood et al., 2006).
In our study, we found that the patients and their families were shocked when they first heard the diagnosis of brain tumor, and it was difficult for them to accept the situation. Previous studies have noted similar reactions (Schmer et al., 2008; Schubart et al., 2008). These reactions are expected during the denial and isolation stages of the loss, death, and mourning periods (Kubler-Ross, 1992; Oz, 2004). This stage is difficult to cope with for the family and healthcare staff because it causes deterioration of interpersonal relationships. These reactions should therefore be considered normal.
The loss of cognitive function and the rapidity of the associated functional changes also lead to a fear of death in the patients' relatives (Sherwood et al., 2006). In this study, patients' relatives stated that they experienced similar feelings. Most brain tumors appear with neurological signs such as psychomotor dysfunction, headache, nausea, vomiting, fatigue, and insomnia (Janda et al., 2008; Sherwood et al., 2006). The rapid deterioration because of these symptoms tends to accelerate the decision-making process of the patients and their relatives. This study also showed that the physical and neurological problems experienced by the patients influenced the acceptance of surgery by the patients' loved ones or relatives.
Surgical intervention may result in neurological deterioration affecting all or part of the patient's body, or the patient may even die during surgery (Lang, Neil-Dwyer, & Garfield, 1999; Sherwood et al., 2006). This increases the responsibility placed on the patients' loved ones or relatives. They feel sad and fearful because their relative may die or deteriorate during surgery. The patients' relatives in our study also stated that they were afraid their loved one would die during the surgery. This fear and anxiety led to people crying for joy when they first encountered the patient after surgery. However, we found that the postoperative wound dressings, the drainage system, and the facial edemas on the patient frightened the patients' relatives. Providing information to the patient and loved ones or relatives regarding these matters preoperatively should decrease these postoperative reactions and make it easier to cope.
Radiotherapy and chemotherapy are usually performed after surgery in patients with brain tumor. In this study, the ongoing treatment process because of radiotherapy led some participants to think that their patient had not completely recovered from the tumor. This was because of both the patients and their relatives having insufficient information on radiotherapy. The uncertainty about the reversibility of lost functions also caused anxiety in the patients' relatives.
In this study, it was clear that the patients' relatives had difficulties coping with the physical side effects of a brain tumor. Brain tumor patients have problems related to cognition, mobility, vision, hearing, and speech and experience symptoms such as headache, fatigue, numbness, and insomnia. Continuity of these symptoms after surgery increases the need to care for the patients (Janda et al., 2008). The care load of the patients' relatives increases as the physical disability of the patient advances. The physical difficulty of maintaining the daily activities of the patient cause physical, economic, social, and psychological problems in the relatives (Malak & Dicle, 2008).
The cognitive changes, the memory problems, and the confusion experienced by patients with brain tumor cause problems related to work and daily activities (walking, eating, talking, and housework). These changes also increase the responsibilities of the patients' loved ones or relatives regarding their care. The patients' relatives provide all the support during this period, along with help with daily activities (Keir, 2007; Schubart et al., 2008; Sherwood, et al., 2006). In this study, the patients' family members stated that providing care had a negative effect on their role in the family and on their daily and work-related life. In addition, the patient's behavioral changes made these activities more difficult. Schubart et al. (2008) stated that the patient's relatives in their study had more difficulties coping with behavioral and personality changes than with physical care.
Our study showed that the patients' relatives feared that the tumor had not been fully removed when the treatment continued with whole-brain radiotherapy after the surgical treatment. Radiotherapy and chemotherapy administered after surgical treatment in patients with a brain tumor caused various problems. For example, the side effects of radiotherapy made the patients' care more difficult (Keir, 2007). Chemotherapy and radiotherapy cause fatigue and cognitive function disorders and make it more difficult for the patients to perform daily activities. This increases the need for care and help during this period (Sherwood et al., 2004). In this study, we also observed that the relatives experienced difficulties in home care related to the side effects of radiotherapy.
Family members experience physical and emotional problems because their own time is limited because of spending most of their time on patient care (Lang et al., 1999; Sherwood et al., 2006). However, the relatives in this study emphasized that the problems they experienced were not important when compared with the patients' conditions. Turkish culture dictates that the family and relatives take on the treatment and the consultant roles in the traditional healthcare system (Gulec, 2000). This reflects the character of the Turkish family: It plays a central role in Turkish culture for the protection of national and moral values. Although it has changed over time, the Turkish people protect the traditional family structure. The traditional Turkish family structure consists of mother, father, children, and one or more grandparents. The care of the children, disabled people, and patients is generally provided by the other family members (Tezcan, 2010).
In this study, it was found that patients' relatives received support mostly from family members, neighbors, and friends in terms of the patients' care. Other studies have shown that family members who are unable to meet the need for care because of the patient's functional and cognitive changes look for social or professional support to be able to cope with the new situation and its associated problems (Janda et al., 2008; Schubart et al., 2008; Sherwood et al., 2004). Sherwood et al. (2006) report that a patient's need for care and the burden it places on relatives increase when tumor-related neuropsychiatric problems that decrease the patient's safety are present. In this study, one patient's relative stated that he had difficulty coping with this kind of situation and was compelled to seek psychiatric support. Various coping strategies (looking for solutions to the problem, receiving support from friends or family, receiving physicians' support, etc.) are used to cope with the problems that can cause stress and depression in family members because of the psychosocial problems of brain tumor patients and the complex care required (Anson and Ponsford, 2006, Janda et al., 2008; Verhaeghe, Defloor, & Grypdonck, 2005). The changes in the mental state of the patient and the difficulty he or she has moving around also require more help and support from the family members providing care.
Once the diagnosis is made, the patient's loved ones or relatives try to get information on the patient's status, the severity of the disease, and the surgery to be performed (Janda et al., 2008; Sherwood et al., 2006). In this study, it was shown that the patients' relatives had different levels of knowledge about the surgical procedure. Half of the patients' relatives complained of not being able to obtain adequate information regarding the treatment process and patient care. We believe that the satisfaction level of the participants with the people providing information was determined by the different medical officers or educational differences among the patients. The patients' relatives experienced difficulties maintaining the care of their patients with brain tumor because of the lack of protocols covering what information to provide on discharge. Making an attempt to provide information according to the knowledge needs of the patients and family members makes it easier for the relatives to cope as they struggle to create their new life.
Brain tumor patients need prolonged postoperative care. As a result, a patient's family plays an important role in every stage of treatment and care. This study showed that the patients' relatives experienced difficulties during the diagnosis, treatment, and patient care. These relatives had inadequate knowledge about the surgical procedure, possible complications, patient care, and home care. The medical staff of the department of neurosurgery focused on the treatment and care of the disease and neglected the need for knowledge and the psychosocial situation of the patient's relatives. We conclude that it is important to give more information to the patient's relatives during care. This study should help to increase the quality of care and will be informative for planning patient care because it focused on the feelings and difficulties of the patients' relatives.
Implications for Nursing Practice
The functional, the cognitive, and the sensory changes that occur in patients with brain tumor cause challenges for their relatives. Having nurses and caregivers provide information and discuss these difficulties during the patient's care may help the relatives to cope. Achieving successful care of patients with a brain tumor and getting favorable results requires cooperating with the patients and their families. Nurses must inform the family members of the postoperative care requirements of the patients during this period and plan effective education according to their needs. It must not be forgotten that the nurse is the primary person who can attend to the needs of the patients and relatives. The training program to family members should provide enough information on the disease, treatment, drugs, and care of the patient. This program may also help the relatives to cope with their problems.