BACKGROUND: To support decision-making for patients with malignant brain tumors, it is necessary to understand family needs during the hospitalization period. The assessment sheets and checklists generally used in the ward focus on the patient’s condition with only a few items related to family information. Many checklists are not tailored to the patient’s disease and therefore do not address changes in condition and neurological symptoms. Thus, based on previous research, this study aimed to extract items that clinical nurses consider necessary for the family members of patients with malignant brain tumors by filling out a self-administered assessment. METHODS: For the 92 self-made questions, the Delphi method was performed three times for the panelists; consensus was reached on the necessity of a family self-administered information gathering item. The patients’ families answered questions using a 1 - 5 rating scale to assess support required, with 5 being necessary and 1 being unnecessary. In the analysis of the 3rd survey, the consensus rate was calculated as follows: out of 5 options for each question, scores of 5 and 4 were combined and judged to be necessary. The average value was calculated as 87.3% and this value was used as the criterion for agreement. RESULTS: In the final round, answers from 45 panelists were obtained, and consensus was obtained for 47 questions. The 47 questions were extracted using the Delphi method based on reasonable condition settings and yielded reliable results. CONCLUSION: The data collected in this study can contribute to support programs aimed at helping families of patients with malignant brain tumors.
In Japan, in 2017, the number of people affected by brain and central nervous system tumors was 5778, and the prevalence rate was 4.6 persons per 100,000 population [
In patients with malignant brain tumors which impair consciousness, the choice of medical treatment is often left to the family. To obtain home health care, it is necessary for the caregiver to make a decision on the medical treatment, which reportedly leads to a shortening of the period required for discharge adjustment [
Customary assessment sheets and checklists focus on the patient’s condition with only a few items relating to their family. Many are not tailored to the patient’s disease, and therefore do not address changes in condition and/or neurological symptoms. This makes it difficult for families to gauge patient’s prognosis. Additionally, many existing evaluation tools for the families of cancer patients are shared without specifying tumor site [
A questionnaire survey was conducted using the Delphi method [
The participants of this study were nurses who have been working in the neurosurgery/internal medicine ward for more than 3 years.
Using the medical function information system of each prefecture (administrative district) in Japan, the keywords “brain tumor resection” from “diseases/treatments that can be dealt with” were selected, identifying 1142 facilities. Of these, we requested a survey of 834 facilities with over 200 beds (the standard for regional medical support hospitals). The survey was conducted in 64 hospitals in which nursing directors provided consent to participate in the study in advance. We mailed eight copies of the survey form for nursing directors in the target facility and asked them to distribute the survey to three to eight nurses who have worked in the neurosurgery/internal medicine ward for more than 3 years. Participants were asked to complete an anonymous survey form by themselves and to return it to the team if they consented to the research. The return of the survey form was recognized as consent to participate in this study. The participants of the second and subsequent surveys were those who have been asked to enter their name, mailing address of materials, and whether or not they have consented to the study in the dedicated form on the Web and have shown their consent.
At the time of the first survey, an explanatory document of the study was enclosed, and those who agreed to participate in the study were asked to answer the survey form. The answer results were summarized in feedback materials, along with free response questions. Feedback was incorporated and revised second survey forms were mailed to the participants who consented. Materials summarized the distribution and average of the answers, along with the free response from family members. The free response revealed the most important considerations, as perceived by the family regarding support needs. We asked the participants to respond to the survey form after referring to the feedback materials. Finally, we repeated the survey again and the results were analyzed.
Questionnaires were a useful tool for assessing the needs of the families of patients with malignant brain tumors. We created the questions needed to assess specific needs from families of malignant brain tumor patients. We wrote 92 questions by reviewing all the subcategories from seven previous studies that qualitatively analyzed the thoughts and difficulties for families [
We asked that for nurses answering the questions to disclose their years of experience on the final survey.
The selection rate and average value of the answers to each question were calculated for each survey. Questions were corrected, added, or deleted, with reference to the contents of the free response. The mean value was analyzed using the Mann-Whitney test for the first and second surveys, and the second and third surveys, respectively, in order to confirm the change in the mean value at each survey.
In the analysis of the third survey, out of five possible answers for each question, responses of five and four were combined and judged to be necessary, and the consensus rate was calculated accordingly. The average value of the consensus rate for all the questions used in the third survey was calculated, and 87.3% was set as the criterion for consensus. IBM SPSS Statistics for Windows, version 27.0 (IBM Corp., Armonk, N.Y., USA) was used for analysis in this study.
This study was conducted with the approval of the Research Ethics Committee of the institution (approval number 2019-037). The researcher explained to the participants in writing about the anonymization of participants, the importance of protection of personal information, the data management methods, and the freedom to withdraw from the study.
The 45 nurses who participated in the third survey had been working on an average of 14.7 ± 7.6 years and in the neurosurgery/internal medicine ward, an average of 7.3 ± 3.1 years (
| Mean | SD | |
|---|---|---|
| Years of experience as a nurse | 14.7 | 7.6 |
| Years of experience in neurosurgery/internal medicine ward | 7.3 | 3.1 |
Out of all the nurses in each hospital distributing three to eight copies of the survey form (in 64 hospitals that consented to the study), 134 copies were collected. The average value of answers ranged from 3.3 to 4.6/5. The consensus rate ranged from 47.4% to 91.8%, with an average of 75.3%. There were 54 free responses regarding the questions (
The second survey form was mailed to 94 nurses who agreed to the surveys, and of those, 49 copies were collected (recovery rate: 52.1%). The range of average values of answers was 3.6 - 4.8, showing significant improvement from the first survey (Mann-Whitney test, p < 0.001). The consensus rate ranged from 54.1% to 98.0%, with an average of 86.4%. There were 36 free responses regarding the questions. Based on those opinions, the terminology of 14 questions was revised, and four duplicate questions after revision were deleted. This resulted in the total number of questions as 81 in the second survey.
The survey form was mailed to the same 94 people as in the second survey, and 45 copies were collected (recovery rate: 47.9%). The range of average values was 3.8 - 4.8, showing no significant difference from the 2nd questionnaire. The results of 81 questions used in the third survey were analyzed upon receipt. The agreement rate in the 3rd survey was 64.4% - 97.8%, and an average of ≥87.3% was considered an agreement, which was 47 items (
Few tools have been developed that are specific to the families of malignant brain tumor patients [
| First survey (N = 134) | Second survey (N = 49) | Third survey (N = 45) | |||||
|---|---|---|---|---|---|---|---|
| The range of average values of answers | 3.3 - 4.6 | 3.6 - 4.8 | 3.8 - 4.8 | ||||
| Median |
| ** | 4.5 | 4.5 | |||
| ** | |||||||
| Consensus rate (%) | 47.1 - 91.8 | 54.1 - 98.0 | 64.4 - 97.8 | ||||
| mean | 75.3 | 86.4 | 87.3 |
** = p < 0.001, Mann-Whitney test.
| Category | Items | Consensus rate (%) |
|---|---|---|
| Thoughts on long-term care | Do you want to know more about the course of treatment and the patient’s condition? | 97.8 |
| Do you want to know information regarding long-term care? | 95.6 | |
| Are you worried about what to do if you have a seizure? | 95.6 | |
| Do you want to use the available social resources? * Examples of social resources: systems, facilities, funds, etc. | 95.6 | |
| Do you want to get rid of the patient’s pain? | 93.3 | |
| Do you feel it difficult to lead a long-term care life after discharge? | 93.3 | |
| Are you worried if you can support your patient’s feelings? | 93.3 | |
| Do you ever feel anxious about your patient being in trouble when you are not with them? | 88.9 | |
| Thoughts on the future | Do you have any concerns about your future life? | 95.6 |
| Are you worried if you can no longer care for yourself in the future? | 93.3 | |
| Is there anything you care about your family other than the patient? | 91.1 | |
| Are you worried about your patient’s ability to lead a daily life after discharge? | 91.1 | |
| Communication with patients | Do you ever use non-verbal communication methods such as speaking or gesturing by changing words and expressions to communicate with patients? | 95.6 |
| Do you feel confused when patients have difficulty expressing their intentions in words? | 95.6 | |
| Can you take a long time to understand the patient’s words? | 93.3 | |
| Do you feel happy when you have a conversation with your patient? | 91.1 | |
| Do you feel confused about the changes in the patient’s personality? | 91.1 | |
| Environment for long-term care | Do you ever want someone to talk to you about possible changes and how to deal with them? | 97.8 |
| Is there a financial burden? | 93.3 | |
| Is there anyone close to you that you can trust? | 91.1 | |
| Do you feel anxious when you hear information about a patient’s illness? | 88.9 | |
| Is it likely that you will be able to receive support from those around you when you are not feeling well? | 88.9 | |
| Do you ever want to interact with a family member who supports a patient with the same illness? | 88.9 | |
| Is there anyone you can talk to? | 88.9 | |
| Family acceptance and grief over illness and symptoms | Are you worried about the patient’s recurrence of illness or worsening of symptoms? | 97.8 |
| Are you worried about the appearance of dementia symptoms and their exacerbations? * Dementia symptoms are a decrease in the ability to understand and judge stories. Dementia-like symptoms such as forgetfulness and depression | 93.3 | |
| Are you worried about the appearance and exacerbation of paralysis? | 93.3 | |
| Do you accept that the patient has become ill? | 88.9 | |
| Is there anything you would like to do with your patient? | 88.9 | |
| Do you ever get confused when you see a patient sad? | 88.9 | |
| Thoughts on treatment | Do you feel the effect of treatment by watching the patient’s (symptomatic) course? | 93.3 |
| Can you ask hospital staff such as doctors and nurses? | 93.3 | |
| Are there times when a patient is worried about being able to tolerate the side effects of treatment? | 91.1 | |
| Would you like to hear from doctors at other institutions about your patient’s treatment? | 91.1 | |
| Do you want to do what you can to treat your patients? | 88.9 | |
| Quality of life (QOL) of caregivers | Can your feelings be affected by the ups and downs of the patient’s mood? | 93.3 |
| Does long-term care interfere with your work? | 93.3 | |
| Are you careful about your health? | 91.1 | |
| Do you have a meal? | 91.1 | |
| Do you think that nursing care will prevent you from doing what you want to do? | 88.9 | |
| Are you able to take a break? | 88.9 | |
| Thoughts on patient intentions | Do you ever want to know the patient’s true intentions? | 97.8 |
| Do you want to respect the patient’s intentions? | 95.6 | |
| Can you talk to the patient about his or her illness? | 93.3 | |
| Do you feel that the patient’s perception of illness is different between the patient and yourself? | 91.1 | |
| Can you talk to the patient about your future life? | 91.1 | |
| Is it painful to be entrusted with important treatment decisions on behalf of the patient? | 88.9 |
This study evaluated the need for more detailed questionnaires to be filled out by patients’ family members to aid in communication with the nursing staff. The Delphi method aggregates the opinions of experts without being strongly influenced by them [
Nurses make decisions based on their own experiences and those items could be answered more objectively by summarizing the decisions based on the individual experiences of each nurse [
The reliability of the Delphi method’s reliability is dependent on appropriate conditions having been set [
The novel 47 questions in this study overlapped with some items when compared to the generalized evaluation tool for the families of patients with cancer [
Some items in this study had fewer questions related to neurological symptoms caused by malignant brain tumors than did the items previously developed [
Family caregivers of cancer patients have unmet needs and seek help with them [
In addition, we can expect that snuggling up to family will make it easier to build a relationship of trust. Studies show that a lack of communication between nurses and families causes issues [
One limitation of this study is differences in the questions according to national culture. The questions extracted in this study are valid only in Japan. Timing of questionnaire administration during the patient’s hospital stay was not determined; the score of each question might have been influenced by the hospitalization period in which they were answered. Future studies that clarify the timing of utilization, as well as national/cultural translation, are needed for broader application.
From the results of this study, we were able to clarify the 47 questions for assessing familial support for brain tumor patients. We believe that using these questions for information gathering and assessment tools will contribute to the understanding of the psychological state of the family, aiding nurses in developing strong relationships for the benefit of the patient.
Focusing information gathering items in clinical settings, it can be expected that nurses will be able to eliminate differences in perception based on years of experience and provide consistent care to the patient and family. The ease of self-administration also helps reduce the workload of nurses.
We would like to express our deep gratitude to all nurses who participated in this study.
This study was supported by JSPS KAKENHI (Grant Number 20K19219).
The authors declare no conflicts of interest regarding the publication of this paper.
Kamata, Y., Kidachi, R., Takaoka, T., Yamada, M. and Kimura, C. (2021) Identification of Questionnaire Improvements to Assess Familial Support in Malignant Brain Tumor Patient. Open Journal of Nursing, 11, 1031-1041. https://doi.org/10.4236/ojn.2021.1112082