Survey results
Data collection lasted from January to November 2017. A total of 71 out of 101 (response rate = 70%) BFI questionnaires were returned upon patient admission, which were validly completed to be analyzed. Twenty-two patients completed the questionnaire also at discharge and of these, 20 completed also the questionnaire on the perception of nursing care received in relation to fatigue.
The sample mainly consisted of men (54.9%) and haematological cancer patients (52.1%). The main characteristics of the patients are reported in Table 1.
Table 1. Participant characteristics
Characteristics
|
N=71
|
Age- Mean (± SD)
|
65.7 (±14)
|
Sex (%)
|
n (%)
|
M (%)
|
39 (54.9)
|
F (%)
|
32 (45.1)
|
BMI (Me[Q1; Q3])
|
23.4[20.8; 27.2]
|
LOS (Me[Q1; Q3])
|
6[12; 20]
|
Pathology
|
n (%)
|
Hematology
|
37 (52.1)
|
Solid tumor
|
33 (46.5)
|
Both
|
1 (1.4)
|
Fatigue in the physicians’ records
|
n (%)
|
Yes
|
15 (21.1)
|
No
|
56 (78.9)
|
Fatigue in nurses’ records
|
n (%)
|
Yes
|
5 (7)
|
No
|
66 (93)
|
Other symptoms related to fatigue in nurses’ records
|
n (%)
|
Yes
|
17 (23.9)
|
No
|
54(76.1)
|
Abbreviations: BMI, Body Mass Index; LOS, length of Stay, Me, median; Q1, first quartile;
Q3, third quartile; SD, Standard deviation
A total of 48 participants had experienced episodes of fatigue during the previous seven days at admission. Fatigue interfered mainly with work activities (median=5 IQR [2;8]), followed by their ability to walk, physical activity in general, and enjoyment of life. The worst level of fatigue in the last 24 hours produced a median score of 7 IQR [5;8]. There were no significant differences in the values of the BFI items for sex, type of cancer or length of stay (short = <5 days; average = 6-15 days; long >15 days). Neither there were significant differences between the BFI score on admission and at discharge (Table 2).
Table 2 Brief Fatigue Inventory(BFI) results (N=71)
Tiredness in the last seven daysa
|
N (%)
|
|
|
|
|
Yes
|
48 (66.7)
|
|
|
|
|
No
|
15(21.1)
|
|
|
|
|
BFI scores
|
Mean
|
±SD.
|
Me
|
Q1
|
Q3
|
Level of fatigue right now
|
5.3
|
2.5
|
5
|
3
|
7
|
Usual level of fatigue
|
5.2
|
2.5
|
5
|
3
|
7
|
Worst level of fatigue during the last 24 hours
|
6.2
|
2.5
|
7
|
5
|
8
|
How fatigue interfered during the past 24 hours with your:
|
Mean
|
±SD.
|
Me
|
Q1
|
Q3
|
General activity
|
4.5
|
3.3
|
4
|
1
|
8
|
Mood
|
3.5
|
3.1
|
4
|
0
|
6
|
Walking ability
|
4.7
|
3.2
|
5
|
2
|
8
|
Normal work
|
4.9
|
3.4
|
5
|
2
|
8
|
Relation with other people
|
3.3
|
3.1
|
3
|
0
|
6
|
Enjoyment of life
|
4.4
|
3.6
|
4
|
1
|
8
|
BFI results admission vs discharge (N=22)
|
Admission
|
Discharge
|
BFI scoresa
|
Mean
|
±SD
|
Me
|
Q1
|
Q3
|
Mean
|
±SD
|
Me
|
Q1
|
Q3
|
p- value
|
Level of fatigue right now
|
4.5
|
2.7
|
4.0
|
2.8
|
7.0
|
4.5
|
2.8
|
4.0
|
1.8
|
7.0
|
0.8
|
Usual level of fatigue
|
4.3
|
2.6
|
4.0
|
2.0
|
6.3
|
4.9
|
2.8
|
5.5
|
3.5
|
7.0
|
0.3
|
Worst level of fatigue during the past 24 hours
|
5.2
|
2.8
|
5.5
|
3.0
|
7.3
|
5.5
|
3.1
|
6.0
|
4.0
|
8.0
|
0.2
|
How fatigue interfered in the past 24 hours with your:
|
Mean
|
±SD
|
Me
|
Q1
|
Q3
|
Mean
|
±SD
|
Me
|
Q1
|
Q3
|
p- value
|
General activity
|
3.5
|
3.1
|
3.0
|
1.0
|
5.3
|
4.3
|
3.1
|
5.0
|
1.0
|
7.0
|
0.2
|
Mood
|
3.0
|
3.1
|
2.0
|
0.8
|
4.3
|
3.1
|
2.7
|
2.0
|
1.0
|
6.0
|
0.9
|
Walking ability
|
3.7
|
3.1
|
3.0
|
1.0
|
6.5
|
3.5
|
2.9
|
3.0
|
0.0
|
6.0
|
0.7
|
Normal work
|
4.2
|
3.8
|
3.5
|
0.3
|
8.0
|
4.1
|
3.8
|
3.5
|
0.0
|
7.3
|
0.7
|
Relation with other people
|
3.3
|
3.1
|
2.5
|
0.0
|
6.3
|
2.9
|
2.9
|
2.0
|
0.0
|
5.5
|
0.7
|
Enjoyment of life
|
3.6
|
3.4
|
2.0
|
1.0
|
6.5
|
2.8
|
3.1
|
1.0
|
0.0
|
5.8
|
0.3
|
LOS
|
10.1
|
10.0
|
6.0
|
3.0
|
16.5
|
|
|
|
|
|
|
a missing data; Abbreviations: LOS, length of Stay, Me, median; Q1, first quartile;
Q3, third quartile; SD, Standard deviation
Fatigue was reported 15 times in the medical records. The nurses detected fatigue 5 times, whereas on 17 occasions they reported problems associated with fatigue (e.g. mobility problems, increased soporous state, reduced appetite, and generalized tiredness). In the patient records, we did not find any specific interventions implemented by nurses aimed at managing fatigue.
With regard to patients’ perceptions of nursing care received, 68.8% of the respondents reported that nurses had paid attention to their fatigue several times. Regarding the actions taken by nurses to deal with fatigue, we found that no information was provided on how to subdivide the day in 45.5% of the cases, reduce efforts in 46.2% of the cases, and measure fatigue autonomously in 54.5% of the cases. Instead, information was provided on how to ask others do some activities for them in 53.8% of the cases. According to the patients’ perceptions, nurses provided reassurance and psychological support (57.1%), and periodically checked the level of fatigue (46%). In 53.3% of the cases, they did not check or ask what the causes of fatigue could be and in 46.7% of the cases they did not encourage distraction. In 50% of the cases, they implemented interventions for other symptoms, such as pain and dyspnoea. Finally, they tended to avoid requesting consultation services by other professionals (Table 3).
Table 3. Questionnaire on patients’ perceptions about care received by nurses to manage their fatigue
(N=20)a
|
Never
N(%)
|
At least once N(%)
|
Several times
N(%)
|
Did you inform the nurses who were caring for you about your fatigue?
|
5(29.3)
|
4(23.5)
|
8(47.1)
|
Do you think the nurses paid attention to your fatigue?
|
0
|
5(31.2)
|
11(68.8)
|
Of the actions listed below, were there any that made you feel better and that the nurses performed?
|
Yes
N(%)
|
Partly
N(%)
|
No
N(%)
|
Information/suggestions on how to:
|
|
|
|
➢ Subdivide the day
|
4(36.4)
|
2(18.2)
|
5(45.5)
|
➢ Reduce efforts
|
5(38.5)
|
2(15.4)
|
6(46.2)
|
➢ Ask others to do some activities
|
7(53.8)
|
1(7.7)
|
5(38.5)
|
➢ Measure fatigue by yourself
|
4(36.4)
|
1(9.1)
|
6(54.5)
|
Reassurance and/or psychological support
|
8(57.1)
|
2(14.3)
|
4(28.6)
|
Periodic check of level of fatigue
|
7(46.7)
|
2(13.3)
|
6(40)
|
Interviews & follow ups to understand the cause of your fatigue
|
5(33.3)
|
2(13.3)
|
8(53.3)
|
Encouraged to distract yourself (e.g.: music, games, reading, etc.)
|
5(33.3)
|
3(20)
|
7(46.7)
|
Help to keep activity levels to the minimum
|
5(33.3)
|
6(40)
|
4(26.7)
|
Involvement of specialists:
|
Yes
N(%)
|
No
N(%)
|
|
➢ For mobilization (physiatrists, physiotherapists)
|
8(53.3)
|
7(46.7)
|
|
➢ With massages
|
1(7.1)
|
13(92.9)
|
|
➢ For psychological support (psychologists, etc.)
|
2(14.3)
|
12(85.7)
|
|
➢ For nutritional support (nutritionists, dietitians, etc.)
|
4(26.7)
|
11(73.3)
|
|
|
Yes
N(%)
|
Partly
N(%)
|
No
N(%)
|
Interventions to facilitate sleep/rest
|
4(26.7)
|
5(33.3)
|
6(40)
|
Treatment of other symptoms (e.g. pain, dyspnoea…)
|
7(50)
|
3(21.4)
|
4(28.6)
|
amissing data
Patients’ perceptions (from interviews)
Between March-November 2017, 12 patients were interviewed, 5 males and 7 females aged between 34-82 years.
Five themes were identified: Theme I: “feeling powerless and aggressive”, Theme II “my strategies or what helps me” Theme III “feeling reassured by the presence of family members”, Theme IV “feeling reassured by nurse’s gestures”, Theme V “being informed”.
Theme I: “Feeling powerless and aggressive”.
All the patients names reported in the tables are pseudonyms.
It changes you, you are different
Patients described fatigue as something that impacted them both physically and psychologically, and that influenced their perceptions and senses. They reported how this symptom manifests suddenly, and makes them feel unable to do anything (Table 4, quote 1). Some patients felt powerless, others instead were angry and reacted aggressively, but this behaviour was unusual for them (Table 4, quote 2). Fatigue manifested at different times of the day, some felt it in the morning, others in the evening, and others throughout the day.
Influences habits and social relations
Patients reported how strenuous it was for them to carry out their daily living activities or to stay in places where there were many people, such as supermarkets. Everything became hard and undesirable, described as ‘too much’ for their physical and emotional resources(Table n. 4, quote 3).
Fatigue and the disease also significantly changed the person’s roles in terms of relations, both in daily life and at work. People ended up depending on others and this caused psychological suffering(Table 4, quote 4)
Some patients also talked about their problems with concentrating and short-term memory, which impacted also on their jobs(Table 4, quote 5).
Table 4 Quotes Theme I: Feeling powerless and aggressive
Quote 1, Paoloa: “it started suddenly without a reason, I no longer do anything, almost as if I went in hibernation. I’m just the ghost of myself."
Quote 2, Simona: “I had an episode of aggressiveness, by nature I’m not an aggressive person, but for a silly thing I suddenly flared up and shouted!”.”
Quote 3, Giulia: “you no longer feel like reading, like taking your life in your hands, you no longer feel like going to the supermarket, you choose a time when there’s no-one, because when you are unwell everything seems too much”
Quote 4, Paola “there were times when I couldn’t go out of my home. It was tremendous because I’ve always been independent.”
Quote 5, Elena: “I’m a teacher and I tried to mark my students’ work, but I realized that when I edited the file, I no longer remembered what my student had written.”
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aAll the patients’ names reported in the tables are pseudonyms
Theme II “My strategies or what helps me”
Some patients thought that forcing themselves to do certain things, like going up the stairs, doing yoga, some manual work, and going out for a walk, helped them to cope with tiredness. They reported that it was also important to ‘throw it all out’, like shouting for instance.
The need to rest was considered to be important, as well as maintaining the normal sleep-wake cycle(Table 5, quote 1)
Some reported that the only thing they could do was to act on will power and do some physical exercise, like standing up from the chair. When fatigue arrives, some patients said: “I sit and wait”, as if all they could do was wait until it passes away or gets better(Table 5, quote 2).
When fatigue prevails, you end up having bad thoughts, therefore it is important to listen to your own body, avoiding negative things or people, and concentrating on positive things(Table 5, quote 3).
Table 5. Quotes for Theme II: “My strategies or what helps me”
Quote 1, Simona “when I’m tired, I go up and down the stairs a couple of times, I try to make the effort, then I rest, I do yoga breathing, I shout out, and throw it all out”
Quote 2 Lory “It is important to act on will power, I try to stand up from the chair and if fatigue arrives, I sit down and wait until it passes away or gets better. In these moments, I try to read or listen to music, and think that it will go away just like it came.”
Quote 3, Giulia “I listen to my body very much, I try to avoid what is not good, whatever weighs down on me or negative people. I do some cleaning.”
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Theme III “Feeling reassured by the presence of family members”
Family members and friends are a very important resource (Table 6, quote 1).
Receiving visits from friends or relatives is important because ‘you talk about other things’, as if they felt the need to shift their attention from something that caused pain and immobility to ‘other things’. Patients reported that when they feel ‘melancholic’ they feel comforted and strong thanks to the presence and support of their family members and friends. Being surrounded and at the centre of other’s affection and attention were very important for the patients (Table 6, quote 2).
Table 6: Quotes for Theme III: “Feeling reassured by the presence of family members”
Quote 1, Paolo “I have a fantastic wife, she is very active and also the kids, they are there whenever I’m in need, they are an important reference point. At home my wife lets me do things my way. She understands me.”
Quote 2 Agata: “I have a wonderful family… my husband… my daughters… my best friend, I call her my coach. My nephews and nieces are tremendous …their smiles give me energy.
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Theme IV: “Feeling reassured by nurses’ gestures”
Nurses’ gestures
Nurses made patients feel reassured, the caring expression in their eyes showed an authentic interest and are able to capture your needs even when these are not evident (Table 7, quote 1). Patients underlined that the nurses’ interest was perceived to be authentic when it was accompanied by concrete gestures(Table 7, quote 2).
Talking to nurses about one’s fears and feelings was considered to be important, but patients also underlined that before opening yourself up to the nurses, you must be able to trust them and make sure that you are understood(Table 7, quote 3). Also talking about things that ‘do not concern the hospital’, like sports events was important(Table 7, quote 4).
Patients wanted to receive advice from nurses on how they could manage fatigue but this did not always happen, and according to the patients this was because nurses did not have enough time or had to give the priority to patients who were ‘feeling worse than them”(Table 7, quote 5).
With regard to fatigue. Some patients stated that nurses considered the onset of this symptom ‘normal’ or a ‘routine’; others considered it something extra they had to deal with (Table 7, quote 6)
When nurses collected data on fatigue, patients felt they were being ‘taken in charge’. Some patients underlined the importance of this study and wished that more attention would to be placed on this symptom.
Some patients reported that they had been encouraged to walk, and considered physicians and nurses as their “sports coach”. This portrays the competence of health professionals who know how to help these patients achieve important goals, by working on a person’s ability, motivation and will power.
Other patients reported that although they did speak to nurses, they did not receive any advice on how to manage fatigue. They remember that sometimes nurses remained in silence, an attitude that was interpreted as ‘they are reflecting, they are thinking about it’. Some patients justified the nurses for not giving them any advice, thinking that fatigue ‘is not a problem that is easy to resolve’.
Others thought that specialized nurses could go more in depth and provide practical advice on how to manage their psychophysical resources.
Table 7. Quotes for Theme IV: “Feeling reassured by the nurses’ gestures”
Quote 1, Anna “they worry, look, check, ask what you. They are always there, more than the doctors, and they reassure you”
Quote 2 Gionata “they come back to see how you are, they try to find solutions, they take me for a walk”.
Quote 3 Ginevra “As a patient you understand who is the right person and with whom you can open up with. Ok that person speaks like me… you notice it from the person’s attitude”
Quote 4 Giovanni “the focus is not just on the person’s feelings, but also on the life that is out there”.
Quote 5 Simona “they don’t have much time because they’re busy doing other things and there are people who are worse off than us. I think it’s not easy to manage all this, but I think that in the future they will need to think also of those who feel a bit better”.
Quote 6 Agata“Nurses have many things to do and I think: “fatigue is difficult to deal with, for them it is an extra thing”.
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Theme V “Being informed”.
Being informed about fatigue, knowing its causes and how to control it was very important for patients and helped them have an active role in the care process and understand in advance when certain events may occur(Table 8, quote 1).
Some patients were satisfied with the information they had received and considered the exchange of information between physicians and nurses a positive element(Table 8, quote 2).
Other patients thought that the information they had received was not appropriate in terms of not being complete, checked, and not enough time dedicated to providing it, and this gave rise to a sensation of abandonment(Table 8, quote 3). When information was not deemed sufficient, patients consulted other sources(Table 8, quote 4).
Table 8. Quotes for Theme V: “Being informed”.
Quote 1, Ginevra “being informed enables me to have a more commensurate role with nurses, information /knowledge helps me to anticipate things before they happen”.
Quote 2, Anna “Receiving accurate and timely answers is very important, being informed made me feel involved”.
Quote 3 Claudia “I asked many things both to physicians and nurses, and I have to say that they were very helpful and answered to my questions. However, I felt the need to gain a deeper understanding, I searched the Internet a lot and then I did things my own way, with all the limitations this involved”
Quote 4 Simona, “The information I would need has to more accurate, structured and monitored. In this I felt a little abandoned”.
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The Perception of Nurses (From the Focus Groups)
A total of 15 nurses, (3 men and 12 women, aged between 25 and 45) years old took part in two focus groups.
We identified three major themes and their subthemes: Theme I: ‘Objectivity and subjectivity in the assessment of fatigue’, Theme 2: ‘Nursing contribution in the multidisciplinary management of fatigue’ and Theme 3: ‘Difficulty evaluating outcomes’.
Theme I: Objectivity and subjectivity in the assessment of fatigue
The term used by nurses to describe fatigue was ‘tiredness’, physical and mental, in some cases makes patients feel unmotivated to do things (Table 9, quote 1).
Nurses underlined how this problem was very frequent due to the ‘type of patients’, who were not ‘fit’ due to their age and the ‘intensive’ treatments.
Assessing the presence of fatigue was described by nurses as a ‘subjective perception’, and this generate uncertainty (Table 9, quote 2)
The aspects taken into account were how patients carried out their activities of daily living, how they greeted you, and their willingness to talk. The possibility of considering measurable ‘objective’ data (e.g. blood tests, vitals signs, etc.) was also considered important. The collection of these data would lead nurses to include the ‘fatigue focus’(33) in the nursing records, where a daily assessment would be made to monitor the course of this symptom. In relation to this, some of the nurses reported that they did not use the ‘fatigue focus’ but rather a focus on what they define as ‘something similar to it’ (e.g. difficulty moving, or lack of appetite). At times patients themselves declared that they were feeling weak, describing it as ‘a feeling of uneasiness’. The nurses underlined that the problem of fatigue is something that they discuss about with other nurses, but rarely during multidisciplinary meetings.
Theme II: “Nursing contribution in the multidisciplinary management of fatigue”
This theme included two subcategories: those who deal with fatigue, and the nursing management of fatigue.
Those who deal with fatigue
The nurses reported that it was important to ensure the multidisciplinary management of fatigue. According to the nurses, the most appropriate health professionals for this are physiotherapists and dieticians. The nurses also declared that nursing plays a key role in the multidisciplinary management of fatigue, but they had two different views about it: some reported that nurses had to be proactive; others instead saw themselves as playing the role of the patient’s ‘spokesperson’. The nurses debated on this aspect and agreed that it is important to reflect on what is currently done and on what instead could be done (Table 9, quote 3).
The family was also described as an important resource, although nurses had divergent feelings about this, because on one hand families helped, but on the other, their presence can at times be ‘cumbersome’ (Table 9, quote 4).
The nursing management of fatigue
Fatigue was described as a multifactor symptom, which nurses considered complicated to manage (Table 9, quote 5).
The nurses described interventions such as encouraging patients to take care of their personal hygiene and to get out of bed. They reported that it was important to allow “all the time they needed” but also to “encourage them”. In addition, also a better organization of the space available in the patient’s room could facilitate the patient’s movements.
However, the nurses reported that these types of interventions were implemented on their own initiative (Table 9, quote 6). Therefore, there were various ways of addressing fatigue, some nurses focused more on encouraging patient mobility and others on nutrition, almost as if the interventions depended on the nurses’ individual sensations or a personal way of viewing the problem.
Other than the interventions made by the nurses, there was also an ‘organizational’ aspect regarding the procedure to request the specific intervention of other health professionals, such as physiotherapists, dieticians or psychologists.
Theme III: “Difficulty evaluating outcomes”
The process adopted by the nurses to evaluate the outcomes was poorly structured. The aspects described by the nurses were essentially two: when the patients report that they feel have no longer cold and start joking and smiling.
The nurses also underlined the difficulty evaluating if an outcome was actually the consequence of a nursing intervention or the result of radiotherapy or chemotherapy for instance, and this sometimes led to a sense of frustration (Table 9, quote 7). To address these difficulties, the nurses claimed that it would be useful for them to act upon three aspects: education, use validated tools to measure fatigue, and know the results of the present study.
Finally, the nurses suggested that also the availability of a set of guidelines for an objective assessment of fatigue would be very useful to evaluate the outcomes of their interventions.
Table 9 – Themes and quotes from the two focus groups with the nurses
Theme
|
Quotes
|
Theme I:
“Objectivity and subjectivity in the assessment of fatigue”
|
1 “It’s a kind of tiredness that leaves patients with very little willingness to face the day, with little motivation” (Focus Group 1, Nurse 1)
2. “Sometimes, during handover you receive information about how the nurse who was there before you perceived the patient, but then you personally think that the patient is no longer like that. Maybe because the patient is feeling better now or we may have different ways of seeing things” (Focus Group 2, Nurse 4)
“Ours is a perception” (Focus Group 1, Nurse 3)
|
Theme II:
“Nursing contribution in the multidisciplinary management of fatigue”
|
3. “We have to reflect on this because I think that in addition to encouraging patients to do things, we are mostly their spokespersons” (Focus Group 2, Nurse 5)
4. “Sometimes relatives insist a lot and we let them do things we are not supposed to let them do” (Focus Group 2, Nurse 3)
“I saw the case of a patient where his wife was present and helped out” (Focus Group 1, Nurse 4)
5. “When we listen to a patient that talks about this symptom it’s a problem for us, sometimes we really don’t know what to do” (Focus Group 2, Nurse 6)
6. “We do the interventions but in my view, they are just our own initiative, and we don’t always feel like talking about them, or writing a report about them or objectifying them” (Focus Group 2, Nurse 1)
“the thing it that we don’t agree on a care plan with our colleagues, we just say: there’s this problem, what shall we do? Each of us does a little of what has already been done before or seen before. There is no thinking about which interventions need to be implemented in the future.” (Focus Group 1, Nurse 8)
|
Theme III:
“Difficulty evaluating outcomes”
|
7.“Frankly, I’m not sure of the actual benefit I am providing, it may well be an inducted symptom that it could be due to the patient’s treatment”. (Focus Group 1, Nurse 5)
“We experience a bit of frustration, in the sense that we do what we can, but what he actually does is that he just stays in bed”. (Focus Group 2, Nurse 7)
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