Assessment of Information Needs of Oncology Patients by Nurses

The results of the research can be applied in practice, being the basis for creating training programs for nurses and improving documentation.

Ensuring high-quality communication between the patient and healthcare professionals is a challenge for most healthcare institutions [1]. Providing information has been an important activity of the nurse in clinical practice. Nurses also offer patients psychological support during treatment [2]. 

The needs of cancer patients vary from emotional distress to self-care. The process of cancer treatment and care usually involves contact with a number of healthcare professionals. In order to involve cancer patients in making decisions about their care, healthcare professionals need to analyze and respond to the patient's information needs and self-determination preferences on an individual basis. Patient-centered individual education correlates with better treatment outcomes for patients [3]. 

Men need information related to sexual topics more than women. Therefore, all cancer patients should be asked whether the disease or treatment is causing problems in relationships or sexuality. Oncology nurses should be encouraged to discuss sexual topics with patients. Special attention must be paid to patients whose sexual function may have changed due to cancer [4]. In order to identify the patient's need for information, both nurses and physicians can encourage the patient to talk, ask about the patient's needs, ask the patient to reflect back on the previous information, ask if the patient understood, provide an overview before giving detailed information, repeating information, establishing an agenda and summarizing the information given to the patient. Nurses and physicians also deal with the patient's emotions by acknowledging their emotions and asking how the patient copes with them, showing empathy, nonverbal expression, and conducting social conversation. The control sheet, shared protocols and the documentation of the information given to the patient are also used, as well as the written, visual or online method of transmitting information [5].

Although research has shown that cancer patients value information received from healthcare professionals, their need for information is often not met. Unsatisfied information needs are often incomplete information about possible treatment side effects, prevention or avoidance of side effects at home, and treatment that may cause side effects [5,6]. A study conducted in Sweden revealed that 22% of patients did not receive information without a reminder after a change of nurses. Half of the patients would have liked to be more involved in the treatment process. Medication changes were documented in 83% of cases, but only 56% of patients were aware of the changes. 59% of patients were not aware of what was documented regarding their treatment [1]. 

The basic areas of information needs of patients receiving chemotherapy have been studied and reported quite extensively worldwide [7-15]. There are no specific studies on the documentation of information needs and information of patients receiving chemotherapy, but there has been substantial research on nursing documentation, its quality and evaluation as an important part of the integrity of nursing care [ 16-20]. Data gaps are often observed in nursing documentation, which makes it difficult to understand the overall picture of patient-oriented nursing activities [ 21-23]. The results of many studies dealing with nursing documentation show the predominance of documents with biomedical content and insufficient registration of the patient's psychological, social, cultural and spiritual aspects. There are also deficiencies in the documentation regarding the patient's preferences, knowledge, previous health behavior, needs and assessment of quality of life. Patient education is also rarely mentioned in the documents [17]. 

In Estonia, the treatment of oncology patients is directed to larger hospitals. NANDA-I nursing diagnoses are used in Estonia, and documentation is mostly done electronically and/or on paper. The information needs of oncology patients and their assessment have not been studied in Estonia.

To identify how the information needs and informing of oncology patients are documented,how the information needs of oncology patients are based on the experience of nurses and how the assessment and documentation of patients' information needs are carried out.

Respondents 

In order to compile a sample of documents, patients who met the following criteria were contacted: they were hospitalized due to an inpatient or day-patient oncological disease of the Oncology Center of East-Tallinn Central Hospital; gave informed consent to participate in the study and to view the documentation prepared and filled out by the nurses at their East-Tallinn Central Hospital. The patient was proposed to participate in the study, informed about the study and took written consent by a co-investigator, who was a nurse of the Oncology Center of East-Tallinn Central Hospital. An attempt was made to include in the study patients with so-called moderate disease duration, whose nursing documentation analysis would not exceed a reasonable amount of work, but at the same time would be of a sufficient volume to evaluate the documentation of the need for information. A co-investigator, a nurse from the hospital's oncology center, extracted the necessary documents filled out by the nurses for the study (usually after the treatment case was closed) from the hospital's clinical database eHealth and anonymized it. The documents under review were nursing diary entries and nursing anamnesis. A total of 28 patients' nursing records were reviewed. 

In order to create a sample of interviewees, we contacted nurses who met the following criteria: worked in an oncology center at the time of the interview and had at least one year of work experience with oncology patients; gave informed consent to participate in the study. Nurses were proposed to participate in the study, informed about the study, and written consent was taken by the co-investigator of the study, who was a nurse from the hospital's oncology center. A total of 14 nurses were interviewed. 

Study design 

It is a qualitative research. The documents considered in the study were the nursing history/primary history and the nursing diary entries. The document review took place at the oncology center between January and February 2019. The observation documents were prepared by the co-investigator participating in the study, i.e. the oncology center nurse, by the agreed time. In all cases, only the nursing documentation of the patient's current treatment case was examined, as it was large enough to assess the documentation of the need for information. Data were collected using a previously developed document observation form. The observation form was based on the research questions and was prepared and coordinated during a group discussion in which all researchers participated. The data to be collected were sex, date of birth, main diagnosis, type of treatment case, reason for current hospitalization/admission, start and end date of the treatment case, number of nurses who made entries and documented and undocumented episodes of need for information. In the case of a documented information need episode, the name of the document, the date, the problem (i.e. what information the patient needed) and the solution (i.e. what information was given to the patient) were noted. Undocumented episodes of need for information were considered situations where, based on the researchers' assessment and on the "Nursing Interventions Classification" (NIC), it would have been necessary to inform the patient, but it did not take place. In the case of an undocumented information need episode, the name of the document, the date and the objective problem (i.e. the patient's objective information need for which information was not documented) were provided. One observation form was completed for each patient's documentation. 

Semi-structured interviews with the nurses of the oncology center were conducted in the work environment of the interviewees according to the interview plan prepared earlier. The interview plan was based on the research questions and was prepared and coordinated during a group discussion in which all researchers participated. To conduct the interview, the researchers agreed with the interviewee individually on a time suitable for both parties. The interviews took place in April-July 2019. The duration of the interviews was 30 minutes on average. The interviews were audio-recorded and later transcribed verbatim. Information that could identify the interviewee or persons mentioned during the interview and most unneccessary words (well, like) were omitted to make the transcribed interviews easier to read. 

Patients and nurses who had given informed consent were included in the study. The results of the analysis of the interviews were generally presented in a generalized form. The interview excerpts used to illustrate the results and increase the reliability of the work were provided anonymously. There was permission to conduct the study from the Tallinn Medical Research Ethics Committee. 

Analysis 

Content analysis was used to analyze the data. The data were grouped into a table according to the distribution in the observation form. Patients were given individual numbers in the table. Afterwards, group work took place, during which the received data were discussed, evaluated and interpreted, and the most appropriate subtopic was assigned to each information need episode (both documented and undocumented) entered in the table, in the opinion of the authors of the work. The researchers were open to everything and wrote down everything that seemed relevant and correct. The choice of sub-topics was followed by the same wording. Initially, subtopics were marked as a comment next to the cell of each information need episode in the summary table. Then, separate pages were made in the table about the documented and undocumented information needs, where the main topic categories corresponding to the subtopics were brought out. When describing documented information need episodes, it was based on what was written in the observed nursing documentation. The description of undocumented episodes of need for information was based on the instructions for informing the patient in the "Nursing Interventions Classification" (NIC) (2018). NIC was chosen for the reason that the NNN taxonomy (NANDA-International, Nursing Outcomes Classification and Nursing Interventions Classification) has been the basis of nursing education in Estonia since 2011. 

As the first step in the analysis of the interviews, the authors of the paper individually read all the transcribed interviews several times, sketching a preliminary list of themes that emerged from the interviews. Then, as a result of the joint discussion, an initial topic sheet was prepared with the topics and subtopics that resonated most from the interviews. Further interviews were coded. This was done in two separate groups to reduce the individual workload and increase the quality of the research. Codes were placed on the text sections, based on the initial topic page and at the same time remaining open to the emergence of new topics. Then a new group work took place, during which the two codings were brought together and the final topic sheet was formed. The texts of the coded interviews were entered into a single table according to the final topic sheet, so that all the necessary information to describe the results could be easily found.

Respondents 

A total of 28 patient records were reviewed. Nine patients had breast cancer, seven gastrointestinal, six gynecological, one lung, one urinary tract and one prostate malignancy. In three cases, the localization of the tumor was not clear from the nursing documentation. The reason for the treatment case was surgery (primary/recurrent), consultation in the breast clinic or chemotherapy. 

There were 24 women and 4 men born between 1929 and 1987, and the average number of treatment days was 21 days (min 1, max 184). On average, 7 nurses per patient made documentation entries (min 1, max 18). The need for information was documented in a total of 80 cases, and 159 episodes of the need for information were left undocumented.

Most of the interviewed nurses had 1-5 years of experience working with oncology patients (8 nurses), 2 had 6-10 years of experience, and 3 had more than 10 years of experience. 

Documentation of oncology patients' need for information 

When documenting the need for information and the information of oncology patients, three main topics were raised: organizational issues and hospital treatment, drugs and side effects of drugs in the hospital, and home treatment and monitoring (see Table 1).

Table 1: Main and subtopics of documentation of oncology patients' information needs. 

The first main topic was documented organizational issues and hospital treatment, where the subtopics included introduction of the ward's internal structure, introduction to the analysis, preparation and introduction to surgery, postoperative regime and treatment plan. The internal rules of the department were introduced in 16 out of 28 cases. In three cases it was a patient receiving repeated chemotherapy, in one case it was a patient receiving chemotherapy for the first time, and in six cases it was not clear from the observation documentation whether it was a patient receiving chemotherapy for the first time or repeatedly. In addition, one patient had a separate tutorial on how to use an alarm clock.

Typical entries were:

"The internal procedure of the ward introduced to the patient" (patient 3, patient 4, patient 7, patient 9)

"The patient has familiarized himself with the ward" (patient 1),

"Introduced routine" (patient 12)

Presentation of the nature of the examinations and procedures was documented for four patients. One patient had a documented need for information about mammography:

"The need and nature of mammography explained". (patient 11).

Preparation for the surgery and presentation of the nature of the surgery was documented for 11 patients. Different wording was used to convey information about the upcoming surgery, for example:

"Advised and informed about the surgery" (patient 13, patient 18)

"Pt. is aware of the surgery" (patient 14)

"Given information about the surgery" (patient 15)

"Informed about the surgery" (patient 19)

Typical entries also occurred in relation to the provision of information regarding the postoperative regimen in one patient:

“Postoperative regimen explained." (patient 19)

Information about treatment and treatment plan was documented twice:

"Patient treatment plan explained" (Patient 16)

“Advised about further treatment” (patient 17)

Another main topic was documented as treatment and drug side effects in the hospital. Eight patients had documented presentation of the nature of pain management. In addition, the patients were taught to follow the pain treatment scheme, but at the same time there was no information on whether and to what extent the patient was taught/explained how to cope with pain. Three patients complained of restlessness and complained of not being able to sleep, but rather it is documented that the patient was sedated and administered a sedative drug. Adverse effects of chemotherapy were noted in the documentation of two patients. In the first case, it was a patient repeatedly receiving chemotherapy. In the second case, it was not clear from the documentation whether it was a primary or repeated chemotherapy patient. In the case of the remaining eight patients, the need for information or information related to the side effects of drugs was not described in the documents. The entries were:

"The patient knows the side effects associated with chemotherapy" (patient 3)

"The patient has been informed about the side effects of the drugs" (patient 6).

The third main theme was documented as home treatment and follow-up, in which documented sub-themes raised venous problems, feeling unwell, continuing drug administration, drug effect and side effects, behavior in case of side effects, injection, teaching result, home regimen, wound care at home, self-monitoring at home, self-management, further monitoring.

Regarding venous problems that may occur at home, there was an episode of need for information and information in the documentation of four patients. All three entries were almost identical. For example:

"The patient was taught how to deal with phlebitis at home. Explained which over-the-counter drugs can be used to treat phlebitis or hematomas (Lioton, Troxevasin)” (patient 6).

Regarding the occurrence of feeling unwell at home, information had also taken place in three cases. The entries were again similar:

"It has been explained to the patient that in the event of an increase in body temperature and deterioration of well-being, it is necessary to contact the attending physician or contact the ED" (patient 6).

In the case of one patient, the following sub-topics could be identified during home treatment and monitoring: continuation of drug administration, drug effect and side effects, behavior in case of side effects, injection and result of teaching. Corresponding entries were made in the nursing documentation:

"The patient has been taught how to continue the treatment (S. Filgastrim N1)...The patient has been told about the effects and side effects of the medicine... The patient has been explained what to do in the event of side effects... The injection technique and the disposal of the used syringe have been explained to the patient... The patient has understood the instruction" (patient 6) .

In the case of the home regimen, the need for information was documented in the nursing records as follows:

"Pt. advised about the home regimen" (patient 11)

"Explained home regimen" (patient 13)

"Informed, advised about the home regimen" (patient 15).

Home wound care was documented for six patients:

“Advised about home wound care” (patient 19).

In the documentation of the same patients (patients 1, 2, 3, 5, 8), there was an entry that home treatment was allowed, but there was no information on how to perform wound care at home.

In addition, one patient was introduced to the nature of the stoma, how to live with it and the importance of hygiene.

In four entries, informing the patient about self-examination at home was documented:

"Taught self-control techniques at home" (Patient 11, Patient 17)

“Advised about self-palpation and symptom recognition” (patient 12);

"Advised about home breast examination" (patient 14).

Further follow-up of the patient was documented in one entry:

"Informed about further follow-up procedure" (patient 12).

The topic of self-management was reflected in one patient's documentation and the entry was:

"The patient has been advised about the process of assigning a care worker" (patient 1).

In the undocumented information needs of oncology patients, seven main topics were raised: treatment and symptoms accompanying oncological disease and concomitant diseases, self-management, nutrition, treatment process and patient education, medication administration and side effects, psychological factors and home management (see table 2).

Table 2: Undocumented need for information.

The first topic is treatment and symptoms accompanying oncological disease and accompanying diseases, and the subtopics are treatment-related symptoms and accompanying diseases. According to the entries, two of the ten patients had a comorbidity, and eight had at least one medical condition for which the aforementioned nursing actions were not documented. Several symptoms such as nausea and vomiting, diarrhoea, malaise, sweating, weakness may have been caused by chemotherapy drugs. Entries about feeling bad, sweating, nausea and vomiting (nausea in two cases, other problems in one case) were documented briefly, and there was no information about informing and teaching patients and nursing activities:

"Feeling average, on the worse side - it can be seen that you are exhausted from being in the hospital" (patient 5)

"Sweats in the evening and at night, after changing several towels in bed. According to the patient, such a peculiarity from the beginning of the disease" (patient 7)

Digestive problems, constipation and diarrhea, and urination problems were factually present in the documentation (each problem in one case), but there was no information on how and how much the patients were helped:

“Constipation, Duphalac” (patient 6);

"Urine mixed with blood, pink" (patient 5).

According to the entries, pain occurred in three patients and both fever and weakness in two patients. Patient information and education were also not documented in these entries:

"Temperature 37.5 - given with Paracetamol/Codeine"

"Ear pain VAS 3, Paracetamol" (patient 2)

"According to the patient, VAS 2-3" (patient 5)

Edema was recorded in the documentation for two patients, but the necessary nursing intervention was not recorded:

“Swelling in the leg area” (patient 1)

Information, teaching and other necessary nursing interventions were also missing in the entries for coughing up blood and shortness of breath (both in one case):

"In the morning he complained that he had coughed up a little blood during the night" (patient 5)

"The patient complains of shortness of breath" (patient 4).

Concomitant diseases such as diabetes and hypertension were factually documented, but there was no information as to whether and to what extent they were taken into account during this hospitalisation:

"Type II diabetes" (patient 5)

"Hypertension" (patient 9).

The second topic is self-management and the subtopics of excretion, personal cleanliness and dressing, and movement. Informing and teaching were undocumented for two patient problems:

"Needs help with body care and dressing" (patient 1, patient 8)

“In diapers, uses a potty chair” (patient 1) 

The third topic is nutrition, which deals with diet. Patient information and education were not documented in three patients. For example, there is a record of the patient's lack of appetite and that he refuses to eat, drink and complains of a loss of appetite. This has resulted in drowsiness. There is a lack of documentation on informing the patient about the importance of eating and physical activity:

"Patient on 0-diet" and after four days "Nutridrink supplement" (patient 1)

The fourth topic is the treatment process and patient education and the sub-topics: introduction to routines, discontinuity of information in documents, monitoring of vital signs and diagnostics, patient education about drains, stomas and cannulae, preparation and introduction to procedures, examinations and surgery, pain assessment and post-operative physical activity. House rules and the ward have not been introduced to three patients. The information was fragmented in the documents, for example, the documents reflect abdominal pain, gases and a bloated stomach in three patients. There is no indication of how the issue was resolved. Vital signs were measured according to the entries in three patients, but information and teaching of the patients was not documented:

"Taken blood tests and vital signs" (patient 1)

"Blood pressure measurement" (patient 9)

According to the documentation, a drain was installed for five patients, but the maintenance of the drain has not been explained. According to the documentation, one patient had both an abdominal drain and a nasogastric tube, one patient had a nephrostomy and two had a bladder catheter, but there was no information about informing and teaching the patients. The documentation also did not reveal when and where the stomach drain and nasogastric tube were installed: on the day of the patient's arrival at the hospital, the entry was "stomach drain" and the next day "nasogastric tube" (patient 1). The entries for one patient were as follows:

"Nephrostomies installed on the patient", "bladder catheter installed" and after 16 days "The patient is anxious because he does not want the bladder catheter back. He complains that he cannot feel his bladder, a slight feeling of tension in his bladder" (patient 5)

According to the records, a port needle was placed in two patients, a central vein cannula was placed in one, and a peripheral vein cannula was placed in seven, but the information and teaching of the patient was left undocumented:

“Port Needle Installed” (Patient 2)

“Indwelling Venous Cannula” (Patient 1, Patient 3, Patient 4, Patient 5, Patient 7, Patient 9)

"Exchange of venous cannula" (patient 5)

According to the documentation, it was necessary to take a sputum sample from one patient, a urine sample from three patients, and a blood sample from eight patients, but the information about the procedures was not documented:

"Need to take a sputum sample" (patient 5);

“Blood Tests Taken” (Patient 1, Patient 2, Patient 3, Patient 4, Patient 5, Patient 9, Patient 10)

In seven patients, the use of the VAS evaluation system was recorded in the documentation, but there was no additional information on whether and how much the patient was informed on which pain evaluation method is involved and how to cope with pain.

In two patients, it was recorded in the nursing documentation that the patient had undergone a surgery, but the documentation did not contain information on whether and how much they had been advised about movement after the surgery. In the case of three patients, information about the procedures was omitted.

The fifth topic is drug administration and side effects, and subtopics are regimen, antibiotic therapy, antinausea therapy, infusion therapy, continuous medications, side effects of pain medications, oxygen therapy, chemotherapy/repeated chemotherapy, and transfusion of blood components.

Adherence to the treatment regimen was incompletely documented in the case of seven patients, and in several cases there was no information on which treatment was involved in the entries. Whether the patients received information about treatment, medications and their side effects, if necessary, was not included:

“Treatment according to the regimen” (patient 1, patient 5, patient 8)

"Patient continues treatment" (patient 1, patient 4)

Antibiotic treatment, anti-nausea treatment and infusion therapy were fixed in the documentation, but it was not written how much and what kind of information the patients received about them:

"According to the antibiotic treatment scheme" (patient 4, patient 6)

“Anti-nausea treatment” and “refuses evening Cerucal, thinks it makes you nauseous” (patient 1)

In the case of some patients, the medication they were constantly taking was noted in the documentation, but there was no indication whether they needed information about the medication and whether it was given. This was also not recorded in the case of the patient receiving pain medication:

"Continuous drugs Nexium, Clexane 0.6 injections" (patient 2)

“The patient uses Zopitin every day” (patient 3)

“Needs sleeping pills” (patient 8)

"Paracetamol/Codeine side effects - dizzy, little effect" (patient 5).

Regarding the six patients who received chemotherapy, the documentation did not state whether they were informed and taught, and there was also no information on whether the patient who received repeated chemotherapy needed more information and whether he received it. Patient education about the side effects of chemotherapy was also undocumented:

“Patient in repeated chemotherapy; the treatment continues according to the scheme, the patient receives chemotherapy" (patient 1)

“Receiving chemotherapy” (patient 10).

According to the documentation, a transfusion of blood components was given to one patient, but it was not stated whether he was informed about the procedure:

"Received two doses of platelets the previous day, tolerated well" (patient 1).

The sixth theme is psychological factors, under which fear, anxiety and emotional restlessness were discussed. Information and teaching were undocumented for three patient problems:

"The patient has fear, is afraid" (patient 1)

"Anxious because doesn't want the bladder catheter back" (patient 5)

"Emotionally restless, worried during the whole infusion treatment, also worried about his health after discharge from the hospital" (patient 7).

The seventh topic is coping at home, where the subtopics are further treatment plan, wound care, smoking cessation counseling, and transferring the patient to another healthcare facility. For six patients, the documentation stated that they were allowed to go home after chemotherapy, but there was no indication whether they were given information and instruction to cope at home:

“Allowed to go home at the end of chemotherapy” (patient 2, patient 3, patient 5, patient 8, patient 10)

“No complaints, sent home” (patient 4).

In the documentation of five patients, there was an entry that they were allowed to go home, for home treatment, but there was no information on how to perform wound care at home. In the case of one patient, it was documented that the patient has a health risk from smoking, but it was not recorded whether the patient was also counseled on this topic. One patient was referred to another healthcare facility, but information and education were not documented:

"The patient went to Järve Care Hospital" (patient 1).

A total of 11 subthemes were formed, which were divided into two main themes: Nurses' experiences of assessing patients' information needs and nurses' experiences of documenting patients' information needs. (see Table 3).

Table 3: Nurses' experiences of assessing patients' information needs and documenting them: main themes and sub-themes.

Nurses' experiences of assessing patients' information needs were divided into six sub-topics: nurses' experiences of interviewing patients, nurses' experiences of the patient's own interest in getting information, nurses' experiences of assessing information needs based on patients' behavior, nurses' experiences of assessing information needs through patient documentation, nurses' experiences of verbal transmission of information needs about patients among staff, nurses' experiences of factors affecting patients' need for information.

The nurses considered it important to question the patients in order to clarify the awareness of the patients and what information the patient still needs. When determining the need for information, the nurses rely on their own experience and encourage the patient to ask himself. Trustworthy relationships between nurse and patient were considered important:

"When communicating with the patient, you can immediately understand whether the patient is interested and whether he is already aware of this problem or is dealing with this problem for the first time." (nurse 13)

“Primary nursing history, when I talk to a patient, I ask about their needs. Based on experience, it is simple to ask the patient for information about, for example, wound care, nutrition or physical activity." (nurse 10)

"I usually ask the patients myself, if you have any questions, you can freely ask the nurse" (nurse 3).

 "You just ask, you don't really know any other way. If he doesn't ask much himself. For example, when he goes home, you ask if everything is clear, the doctor handed over the papers." (nurse 11).

"/.../ when reliable relationships are established, it is easier to work with them" (nurse 2).

As an experience of the patient's own interest in getting information, it was pointed out that the patient himself often asks about a topic that interests him:

"They usually ask questions themselves" (nurse 8).

The nurses also recommend writing down the questions the patient has so that they will not be forgotten at the next appointment:

"Usually we recommend writing down the questions for next time, otherwise they always forget the questions" (nurse 2)

"If you have a question at home, write it down, and when you come to the department, you can ask" (nurse 3).

Nurses also assess the need for information based on the patient's behavior, pointing out both psychological and physical manifestations that can be noticed:

"The nurse can see what situation the patient is in, e.g. if the patient is stressed, they cannot acquire information well" (nurse 11)

"I observe the patient, how he functions, moves, eats. If the nurse notices that she is having difficulties, she gives advice." (nurse 12)

"If you can immediately see that he is worried, you immediately ask if there are any problems, complaints, and then you start working on that." (nurse 3).

The nurses mentioned the use of documentation when learning about the patient's need for information, but at the same time, the patient's own words are also preferred over the documentation. As documentation, both nursing documentation and doctors' and council's entries are helpful:

"Surely something would emerge from there" (nurse 1)

"You must also look at the patient's papers that come with you. I bet on this electronic input, that in fact it is very, should be, that I can nicely disassemble what is and what was with the patient and already understand it " (nurse 5).

"I don't really look at entries like what he has had in the past, from somewhere in other wards, but rather what he himself has said before or where what has been done to him" - (nurse 6).

"Perhaps you can read a medical epicrisis in order to study the background a little, what has already happened to the patient, whether he has undergone something - some kind of surgery or treatment. I would use this medical epicrisis here” (nurse 5).

"In the oncology council, we can look at something about the patient" (nurse 2).

It was also considered important that the staff verbally communicate their need for information about patients, where information is obtained from both other nurses and doctors.

The patient's need for information can also be learned orally from other nurses and doctors:

"We talk to the doctor about the patient together at the meeting, and when we finish, we come to our room and talk about what the particular patient needs /.../" (nurse 4)

"Or the doctor tells us that if we need something specific, that when the patient goes home, tell him, give him the plasters, for example, tell him that the strip-plasters will come off by themselves." (nurse 6).

As factors influencing the need for information, the nurses pointed out the primary or recurring patient, the patient's age, gender, and the patients' receptivity to information. All primary patients are given the same information. The primary patient's need for information is greater and more attention is paid to it. However, in the case of chemotherapy, the information is repeated all the time, also for repeat patients:

"/…/ we are obliged to speak immediately, without which we will not start any treatment" (nurse 1).

"If the patient is primary, then he needs all the information about chemotherapy, each stage of treatment and side effects, everything about procedures /…" (nurse 3).

"He speaks a little more with the new ones. First patient and then we know in advance and you pay more attention to him" (nurse 2).

"When I give a patient chemotherapy, I have to prescribe what chemotherapy he will receive, when he will receive it, for how long, for how many days and what can and cannot be done. If we start chemotherapy, we will still be careful to either give a reaction or not" (nurse 4).

"Young people are more open to questions. Pensioners are afraid to ask." (nurse 12)

Men are more reserved and ask for less information and help about what is happening to them. They try more to be brave and strong. Information should definitely be given to them even without them asking:

"They are even afraid, men, they are strong and brave, they don't dare to feel that they also need help, they are just like that, they don't ask" (nurse 2).

Nurses' experiences of documenting patients' information needs were divided into five subtopics: nurses' experiences of documenting nursing diagnoses, nurses' experiences of documenting patient education, nurses' experiences of problems in documenting patients' information needs, nurses' experiences of the importance of documenting information needs, and nurses' suggestions for better documentation.

Nurses' experiences in documenting nursing diagnoses were related to the use of NANDA-I nursing diagnoses, which was facilitated by an electronic solution, but at the same time aspects of patient education were no longer based on nursing diagnoses:

“NANDA. I don't know how others do, I'm talking about my experience, that I use the nursing diagnoses that are currently made in the system"; "It is no longer based on NANDA, it is already in free form, which instructions have been given to the patient. /.../ When I write on the computer, I write that the counseling provided to the patient on this and that topic" (nurse 3).

Nurses' experiences in documenting patient education dealt with patient education materials and subject areas of counseling and the method of documentation:

"In the nursing history, you write down which educational materials have been used in teaching." (nurse 7)

"If it is written in the e-system that the patient has been taught, then he needed this information." (nurse 9)

"Patient education also in the e-system, e.g. advised on eating and taught about stoma care." (nurse 10)

Nurses' experiences of the problems of documenting patients' information needs focused on a lack of time, duplication of information in different documents, reluctance to document and a lack of documentation skills. The nurses described the heavy workload, the abundance of tasks and that information is mostly given to the patient orally and there is no time for documentation:

"There are 2 nurses at work at the same time in the ward." (nurse 6)

".../... when there is time, we write on the computer, but mostly we speak orally and teach, a few words go into the computer /.../. I prefer to do manual things and talk to the patient verbally, documentation is the last thing I do" (nurse 2).

"The data must be duplicated on the computer and on paper. In the sense that I make it a goal to at least document on paper the lessons that I have carried out, and if there is enough time, I will mark it on the computer as well" (nurse 3)

"But the need for information is not documented? No!” (nurse 4).

"It depends on the nurse. Some do not write anything because they are informed about this and that." (nurse 13).

 "There is also a lack of information on how to document properly. And inform." (nurse 8)

Nurses' experiences of the importance of documenting the need for information discussed the importance of documentation for other nurses to know what information the patient has already received. Documenting the information provided to the patient provides a comprehensive view of the patient. Information reaches other nurses and doctors through documentation, the patient's problems and fears do not disappear. However, the same information still has to be conveyed repeatedly, despite the fact that talking to the patient is documented. The nurses thought it was always better to document to avoid inconsistencies. The nurses found that documenting the need for information is necessary, simplifies daily work and is a source of information for the following employees, giving an overview of the patient and his problems. Then both the team and the next ward know what the patient can ask, and the nurse or doctor can familiarize themselves with the information first. The nurses thought that if they document the information, it helps to react quickly when problems arise, and also partly to prevent the emergence of problems:

"When the patient goes home, it is better if it is documented to avoid inconsistencies." (nurse 6)

"This makes it easier for us and the doctors to work. So that other nurses who read the entries are still aware that the patient needs information" (nurse 1)

"For the new nurses who are coming, so that they can already know something. Those who graduate or come from other departments, they already know in advance what the patient may ask, and then they can familiarize themselves" (nurse 2)

"This again simplifies the daily work of both myself and other colleagues. Yes, just so that you could still read these entries" (nurse 5).

"In the nursing documentation, I check when the patch has been changed, usually the patch is changed once a day, I monitor it, there the nurse documents whether there was any problem when changing the patch in the wound area, whether there was a hematoma, for example, and I also document information about the pain." (nurse 9).

"...... brings out a nicely complete vision, you know what kind of patient he is and how he heard and whether he heard. For example, if there are some vein problems, the patient has no veins, and this puncturing is so painful and scary that it must be communicated, because there are such topics that may not be raised" (nurse 5);

"...... then the other nurse can also see what I have said" (nurse 1).

"Nurses change and therefore it is easier for other nurses to understand what has been said and done." (nurse 6)

“It's more, I mean, it's for the next watch. Maybe for a doctor. That he is aware that the physiotherapist has been here" (nurse 11).

"Why, so that someone like, for example, if I forget to say something when handing over the watch, then the previous nurse or the next nurse can look." (nurse 12).

"Was an examination ordered or something, so we can read it and then the doctor will see it." (nurse 12).

"Because the patient has more discharge from the wound (inflammation has occurred), it is possible to respond more quickly and adequately and solve the problem". (nurse 13).

"In my own defense, that the patient has been informed, that it has been explained, for example. It is mandatory." (nurse 14). 

As suggestions for better documentation, the nurses pointed out that a separate person would be needed to document the need for information and that some kind of leaflet could be made for the patients for the postoperative period:

"There just needs to be a separate person who makes these long entries. Of course, ideally, it would be good if someone separately wrote all the things so that the nurses would not have to document so much. Even to accompany or talk to the patients themselves, to ask if the nurse has talked and what she has talked about. Discuss with the patient whether he understood the information." (nurse 2).

"I don't think there is any need to change the organization of documentation, but there could definitely be some information brochures." (nurse 13).

The results of this research show that the evaluation and documentation of information needs by nurses is uneven. Previous studies have also often observed data gaps in nursing documentation, which makes it difficult to understand the overall picture of patient-oriented nursing activities [21-23]. There are gaps in the documentation regarding the patient's preferences, knowledge, previous health behavior, needs and quality of life assessment. Patient education is also rarely mentioned in the documents [17].

In a systematic review conducted by Wang et al., it is pointed out that the Supportive Care Needs Survey and the Problems and Needs in Palliative Care questionnaire²⁴ are most often used to assess the patient's need for information. In the documentation and interviews with nurses examined in this study, it was not revealed that any measure was used to specifically assess the need for information.

In the case of both documented and undocumented information needs, mostly the same topics were raised. There are nurses who document the patient's need for information and informing the patient in great detail, but some do it superficially or not at all. Inability to document and a lack of time are cited as reasons. However, as a study conducted in Sweden showed, patients may not be aware of what is being documented about them¹ In this study, the patient's perspective on documentation was not investigated.

Unsatisfied information needs are often possible side effects of treatment, prevention or avoidance of side effects at home, and treatment that can cause side effects [5]. The present study revealed that although side effects are documented, it is often not documented what kind of nursing care has been provided and how the patient has been informed and taught. If information has also been shared with the patient, it is not clear from the nursing documentation whether the patient also understood and whether additional questions have arisen. If the patient has also been informed, it is not clear from the documentation how exactly it went, whether, for example, any information materials were used, etc.

The present research revealed that nurses perform various procedures and also document their performance, but patient information and patient education remain undocumented. Nursing documentation was also patchy in some cases, where there were several days between different entries and there was no information about the patient's condition in the intervening period. Informing the patient about coping at home is undocumented. In the case of psychological factors, it was possible to observe in the documentation the fixation of the patients' fear, worry and anxiety, but there is no information on whether and how the patient was informed about coping with his problems and whether the problem was solved. A similar result has been reached in earlier studies [24,25] , highlighting in particular the patient's anxiety [24].

Research results have shown that the problem with information transfer is not recognizing the patient's educational needs or problems related to the work environment, such as insufficient staff, lack of time, lack of guidelines and the general attitude towards patient education and information transfer in the organization [26]. It can be seen from the interviews with the nurses as well as from the observed documentation that the need for information is reported relatively rarely, which may be due to the lack of guidelines for the transmission of information and the documentation of the need for information. In the interviews, there is a conflict of information about whether the documentation is done manually, digitally or both methods. Some nurses also think that paper documentation is more important than electronic documentation. The documentation could be uniformly either only on paper or digital, or it should at least be clearly understood what kind of information is documented digitally and what kind on paper [27].

In the interviews, the nurses also describe the repeated transmission of oral information - the continuous transmission of information when arriving at the ward, starting chemotherapy, performing procedures, and also when the patient has heard it before. However, documentation is often the very last activity that always comes after procedures, nursing interventions, and talking to the patient. This fact is also confirmed by document inspection, because during the first two inspections, the documentation was chaotic, laconic, and of uneven quality. It was very difficult to get a complete picture of the patient's situation, needs and the nursing care provided to him based on the documentation. One of the most interesting entries was the following: "Patient continues treatment." It was not mentioned what treatment and medicine it was (some patients also received antibiotic treatment, for example) and whether the patient was informed about side effects, for example, and there was no corresponding information in previous entries about the patient. Similar entries were found for other patients. Looking at the documents for the third time, it was possible to observe some improvement in the quality of the documentation, the entries had sometimes become more thorough and patient-oriented. However, among the reviewed documents, there was only one ideal nursing entry in line with the patient's needs, where both patient information, patient education and the result of the education were correctly documented.

The interviewed nurses confirmed that oral information definitely reaches the patient and that documentation of the need for information is necessary, but in most cases this is not evident from the observed documentation. It seemed that the oncology patient is often not consulted about his co-morbidities or other more common problems. This raises the question of whether the oncology patient tends to remain in the shadow of the oncology disease and whether the oncology nurse should approach the patient holistically and focus on all the patient's co-morbidities and problems or not. If the patient is aware of his co-morbidity and does not need information about it, then this should definitely be reflected in the documentation, so that it is easier for the next nurse to orient himself. As nurses, we cannot assume that the patient has already been counseled about a problem by another nurse or doctor.

The information needs of elderly patients (over 65 years old) may differ from the information needs of younger patients. They may have difficulties with structuring and remembering information, and they may also feel overwhelmed by information²⁷. Interviewed nurses only mentioned the fact that elderly patients do not have the habit of asking many questions as a special feature of age-related information delivery, and therefore information must be shared with them even if they do not ask themselves.

We would like to thank the nurses of the hospital for participating in the research and the nursing managers for organizing the research.

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