Self-care behaviours initiated by chemotherapy patients in response to fatigue

Pergamon ht. J. Nurs. Stud., Vol. 34, No I, PP 35-43, 1997

8; 1997 Elsevier Science Ltd. All rights reserved Prmted in Great Britam

002C-7489/97$1700+000

PII: SOO20-7489(96)000314

Self-care behaviours initiated by chemotherapy patients in response to fatigue

Alison Richardson” and Emma Kate Reamb

“Macmillan Lecturer in Cancer and Palliative Nursing, Department of Nursing Studies, King’s College London, Cornwall House, Waterloo Road, London SEI 8WA, U.K.

‘Research Associate, Department of Nursing Studies, King’s College London, Cornwall House, Waterloo Road. London SE1 8WA, U.K.

(Received 30 November 1995; revised 7 July 1996; accepted 5 September 1996)

Abstract

Patients receiving chemotherapy for the treatment of cancer frequently experience severe fatigue which is highly disruptive and distressing. Few studies have investigated the strategies which patients personally initiate to enable them to cope with this symptom. This paper reports the results derived from a study designed to monitor and describe patients’ fatigue during chemotherapy and the self-care measures taken by them to ameliorate it. Data were collected from 109 subjects receiving different chemotherapy protocols using structured diaries. A variety of self-care behaviours were practised and these frequently included modifying or altering activity and rest patterns and employing strategies of a psychological nature. However, the self-care strategies initiated proved largely ineffective. This study indicates that common-sense measures often prove insufficient. Intervention studies are required to evaluate the best ways for health professionals to assist these patients to live with and adapt to fatigue. % 1997 Elsevier Science Ltd. All rights reserved.

Keq’~~ords: Self-care; fatigue; chemotherapy; cancer

Introduction

Patients receiving chemotherapy for the treatment of cancer frequently experience severe fatigue. This may arise as a result of the disease, the chem- otherapeutic drugs employed, or as a result of the psychological distress generated through their diagnosis (Aistars, 1987). Research evidence suggests that at least 70% of patients receiving chemotherapy experience abnormal levels of fatigue (Nerenz et al., 1982; Cassileth et al., 1985; Nail and King, 1987; Nail et ul., 1991). One study conducted by Meyerowitz et al. (1979) reported fatigue in 96% of a sample of women receiving adjuvant chemotherapy for treatment of breast cancer.

In addition, researchers have found that fatigue is not only a common experience but that it is highly disruptive and distressing (Strauman, 1986). It can hamper individuals’ capacity for self-care (Fernsler, 1986) and can impact upon their quality of life. Every- day actions, including household activities, become difficult, and leisure pastimes become less appealing and enjoyable (Todres and Wojtuik, 1979). Rhodes et al. (1988) examined the relationship between the occurrence of symptoms and the performance of daily

activities. Their evidence supported Fernsler’s findings and identified tiredness and weakness as the two symptoms which interfered most with patients’ lives.

Patients may actively attempt to alleviate or manage their fatigue through adopting self-care measures. A number of these measures have been documented in the self-care literature, and have been reviewed by Piper (1989). Self-care is defined as the range of activities that individuals personally initiate and perform on their own behalf to maintain life, health and well- being (Orem, 1991). It encompasses preventative measures, self-treatment and decision-making, when individuals decide whether to seek the assistance of health care providers (Richardson, 1992). Patients living with the demands of chemotherapy often have to develop a new repertoire of skills and knowledge. These enable them to adapt to their treatment and to manage any side-effects, including fatigue, which may arise.

Dodd (1988) identified three actions which are most frequently performed by patients in response to fatigue. These are sleeping or taking naps, resting and cancelling activities. Other activities which have been hypothesised to relieve the fatigue experienced by cancer patients include: exercise (Winningham et al., 1985); the performance of pastimes which can distract

35

36 A. Richardson and E. K. Ream/Self-care by fatigued chemotherapy patients

attention away from feeling fatigued (Weisman, 1976) such as reading, listening to music and socialising; and finally, stress management (Spiegel et al., 1981; Forester et al., 1985). By reducing stress, individuals frequently feel less anxious, more able to cope and consequently less fatigued.

Limited experimental enquiry has evaluated the effectiveness of these strategies for cancer patients receiving chemotherapy. Studies determining the effectiveness of exercise for the reduction of fatigue in breast cancer patients suggest that fatigue may be reduced by an exercise programme (Questad et al., 1982; Winningham et al., 1985; MacVicar and Win- ningham, 1986; MacVicar et al., 1989) but this is subject to dispute (St. Pierre et al., 1992). Preliminary research into the role of diversional activity (Rad- iewicz and Schneider, 1992) suggests that this may enhance coping and enable patients to adjust to cancer and its treatment.

Few studies have investigated and evaluated the strategies which patients personally instigate to enable them to cope with fatigue during chemotherapy. Dodd (1982, 1984, 1986, 1988), in a series of studies, determined that cancer patients generally engage in few activities and that this generally proves only partially effective when responding to side-effects which result from treatment. Such information is vital to inform nurses about the strategies they might recommend to patients and their families in the pursuit of amelior- ating this challenging symptom.

Conceptual framework

Orem’s self-care theory (1971, 1980, 1985, 1991) provides the conceptual framework for this study. This theory is based on the premise that all individuals require self-care to maintain their health and well- being. Patients are conceived as active decision-mak- ers who are responsible for fulfilling their self-care requirements. However, when patients are unable to meet their self-care requirements, nurses work with them to maintain their health and well-being. Thus, the nurse-patient relationship is partly com- pensatory-the patient maintains responsibility for their health whilst the nurse works in conjunction with them to achieve their self-care.

Orem’s theory incorporates three critical constructs: selj-care agency, therapeutic self-care demand and self-care deficit. Self-care agency refers to an individual’s capability to perform self-care. Therapeutic self-care demand refers to the actions required in order to meet the requirements for self-care. The deficit which arises between these two constructs, and is a function of them, is referred to as the self-care deficit. This deficit arises when the self-care agency is quali- tatively or quantitatively insufficient to meet the demands imposed by the therapeutic self-care demand.

Deficits in self-care may arise when individuals have insufficient knowledge about a situation or possible

self-care activities, when they are not skilled in performing these activities or when they are compromised through illness and unable to perform self-care (Levin et al., 1979; Orem, 1971). However, an individual’s self-care agency is not a finite or static entity. Through imparting knowledge, and assisting patients to develop relevant skills, nurses can teach self-care activities (Orem, 1971, 1979; Levin et al., 1979) and augment patients’ self-care agency (Orem, 1985; McCorkle, 1983).

Purpose of the study

The purpose of this study was to:

1. Describe the self-care strategies used by patients receiving chemotherapy to combat fatigue

2. Determine the frequency of these self-care actions 3. Evaluate the effectiveness of these actions 4. Examine the relationship between fatigue and the

performance of self-care

The findings presented in this paper represent part of the results derived from a longitudinal study which monitored and described patients’ fatigue during chemotherapy, and the self-care measures taken by them to ameliorate it.

Definition of study variables

Fatigue

A condition characterised by “subjective feelings of generalised weariness, weakness, exhaustion, and lack of energy resulting from prolonged stress that is directly or indirectly attributable to the disease process” (Aistars, 1987, p. 25).

Self-care

The range of activities that individuals personally initiate and perform on their own behalf to maintain life, health and well-being (Orem, 1991).

Research design

A longitudinal descriptive and correlational design was used to investigate the fatigue experienced by patients receiving chemotherapy and the self-care strategies taken by them to alleviate it. This design, inco- rporating daily collection of data, was selected to record trends and changes over time. Previous studies of fatigue in cancer chemotherapy patients relied on the collection of cross-sectional data at predetermined intervals. As a result they have been unable to determine what occurs in the intervals between these measurements.

A chronological log was used to collect data each day throughout a pulse of chemotherapy, commencing on the day that the drugs were administered. The exact period of time that data were collected

A. Richardson and E. K. Ream/Self-care by fatigued chemotherapy patients 31

varied (either 21 or 28days) according to the drug protocol which the subject received. Unlike designs where subjects are presented with questionnaires to complete at the end of their course of treatment, this longitudinal design was not dependant on retrospective recall which is prone to bias.

Data collection instrument

Diaries have not been used extensively in nursing research (Richardson, 1994). However, they have been used successfully in the documentation of symptoms (Rakowski et al., 1988; Faithfull, 1992; Richardson, 1994) and the study of self-care practices (Freer, 1980; Dodd, 1984, 1987, 1988, 1990). Further use of diaries for research purposes has been documented by Nail et al. (1991).

A recent review of the literature concerned with the use of health diaries as a method of data collection (Richardson, 1994) indicated that such an instrument could prove to be particularly effective for measuring fatigue in this patient population. A diary was con- structed for this study using an adaptation of Dodd’s (1983) design, and incorporated a selection of visual analogue scales to measure the extent of and distress evoked by fatigue and a section to record self-care (see Richardson, 1994).

Visual analogue scales

Visual analogue scales (VASs) provide useful self- report measures for quantifying subjective states (Wills and Moore, 1994). Fatigue is a complex mul- tidimensional construct which incorporates several subjective dimensions (Piper et al., 1989). Four of these dimensions were selected for this study and were measured using unipolar VASs: the extent of the fatigue; the distress that it caused the subject; the degree to which it disrupted their daily activities; and its impact on their leisure pastimes. These four dimensions were selected for their concise representation of the severity and impact of fatigue.

Each VAS comprised a loo-mm line anchored at either end by a short phrase which represented the worst and most favourable scenarios. Subjects were instructed to place a mark through the line at the point which most closely resembled how they had felt during the day. The scales were scored by measuring the distance in millimetres from the low end of the scale to the point specified by the subject,

Se&are hehaviour record

This portion of the diary was adapted from the questionnaire and log developed by Dodd (1983), and was designed to elicit information concerning the self- care actions taken by subjects in the previous 24-hour period for relief of fatigue. In addition to recording the actions that they undertook, subjects documented the effectiveness of these actions (on a four-point scale

ranging from no relief to complete relief) and recorded where the idea for the action had originated.

Sample

One hundred and forty-six patients were approached and asked to consider whether they would consent to participate in the study. Of these, 129 initially agreed to take part, and 109 went on to take part in the study. Patients were recruited from an on- cology unit within a large teaching hospital. This unit provides many services one of which, the administration of chemotherapy, is provided on either an in-patient or an out-patient basis, depending on the health of the individual and the type of drug which is being administered.

Potential subjects were identified by the researchers in conjunction with nursing and medical staff on the patients’ admission to hospital for chemotherapy. All prospective subjects were required to meet the following criteria: (1) over 18 years of age; (2) about to commence, or already receiving, chemotherapy; (3) able to understand, read, speak and write English; (4) able to place an appropriate response on the measure- ment scales; (5) physically and psychologically cap- able of participating in the study. Written informed consent was obtained from all participants.

Each subject was invited to maintain the diary for a 34-week period. Subjects receiving the traditional pattern of bolus and/or short-term infusional chemotherapy completed the diary during the period between the administration of one pulse of chemotherapy to the next, commencing in the evening on the first day that chemotherapy was administered. Subjects receiving weekly bolus injections of 5-Flou- rouracil completed the dairy for a 4-week period commencing in the evening following the administration of a bolus injection. Following recruitment and com- mencement of diary keeping, subjects were contacted by one of the researchers 48-72 hours following treatment. This enabled the researchers to discuss the diary with them, and to resolve any problems regarding its accurate completion. This training period helped to reduce errors and ambiguous entries, and was particularly valuable for those patients who remained in hospital to receive their chemotherapy. The diaries were collected when the patients returned to the hospital either for their next pulse of chemotherapy or for their Outpatients Appointment, had they completed their course of treatment.

Description of the sample

As mentioned above 129 patients expressed an interest in taking part in the study over an 18-month period. The sample comprised cancer patients receiving either single agent chemotherapy or a combination ofcytotoxic drugs for treatment of their cancer. These regimes were administered either continuously, weekly, or at 3- or 4-week intervals.


The mean age of the sample was 58 years (standard deviation (SD) = 12, range 26-82 years). There were marginally more women (n = 72) than men (n = 57). The most common diagnoses were ovarian cancer (20.2%), colorectal cancer (15.5%) and small cell lung cancer (14.8%). The majority of the sample had been diagnosed within the previous 3 months (41.9%) and had metastatic disease (57.4%). Generally, chemotherapy was being administered for the palliation of metastatic disease. The most common chemotherapy regimes were: single agent Carboplatin (20.2%) used in the treatment of ovarian cancer; Epirubicin, Cis- platin and 5-Flourouracil (commonly abbreviated to ECF) (20.2%); and Epirubicin and Etoposide for the palliation of small cell lung cancer.

Of the 129 patients recruited to the study, 109 com- menced their diaries. Twenty subjects withdrew from the project either because on reflection they felt unwill- ing to commit themselves to the project, or because they suffered major toxicity or physical and/or mental deterioration. There was some missing data in these 109 diaries, most commonly when patients were admitted to hospital during periods when they were unwell and their diaries were left at home. There was a significant relationship between worsening fatigue over the diary period and a lower percentage of the diary being completed (U= 777, PcO.05 [one-tailed test]).

Data analysis

The individual fatigue subscales and a combined fatigue score, the mean fatigue score, were used in data analysis. (The mean fatigue score was computed by calculating the arithmetic mean of the four fatigue subscales.) Non-parametric (distribution-free) approaches were used for the analysis of these data. To examine the association between fatigue and the performance of self-care using the Mann-Whitney test, subjects were classified according to their performance of self-care, and their fatigue scores were compared.

The amount of self-care activity performed by the sample was determined through calculating the average number of self-care actions taken by the individuals and the group collectively. The average effectiveness of these chosen actions was determined through the calculation of the median. Data were also examined to see if there was any association between the number of self-care behaviours performed and the demographic variables of gender and age. This was achieved by applying either the Mann-Whitney or Kruskal-Wallis test as appropriate. In addition, the self-care activities were classified and tabulated. Fol- lowing completion of the diary subjects were inter- viewed. This allowed the researchers to make an assessment of the validity of the patients’ recordings of self-care and their effectiveness.

Results

Incidence of fatigue

Eighty nine percent of the sample reported fatigue at some point during the diary keeping period-only 11 patients reported no fatigue. Statistical comparison of the fatigue experienced by the subjects revealed that those patients receiving a 21-day regime were significantly (P < 0.05) more fatigued (mean fatigue score 25.9, SD 23.2) than those receiving either a 28- day (mean 18.8, SD 16.1) or weekly cycle (mean 23.1, SD 26.4). Furthermore, fatigue was greater in patients with either a cholangiocarcinoma or pancreatic cancer (mean 45.9, SD 78), breast cancer (mean 23.9, SD 71) or lymphoma (mean 23.3, SD 66). However, these results should be considered with some caution as the numbers of patients in these groups was small.

The frequency of self-care

Despite the incidence of fatigue, self-care actions undertaken to manage this symptom were only initiated on half of the days (49.9%) when the patients were fatigued. Figure 1 depicts the performance of self-care by the sample throughout the diary keeping period. In total, 693 actions were recorded by the patients in their diaries. Eighty percent of the time patients only performed one action during a day in an attempt to combat fatigue. Two actions were performed on 3.9% of the days, three on 3.8% and four on 2.3% of the days when self-care was initiated. On the days when subjects were fatigued they often failed to perform self-care and this resulted in a mean of only 0.64 self-care behaviours being performed on days which were associated with fatigue. No association was found between the number of self-care behaviours performed and the demographic variables of age and gender.

100

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Day

Fig. 1. Percentage of subjects performing self-care when they are fatigued on a daily basis.


Se&are actions used b-v patients to relieve fatigue fatigue. Over half (59.3%) of the actions taken fell

Thirty one different self-care actions were under- into this category and were used by a large proportion

taken by the patients to relieve their fatigue. The self- (83.6%) of the patients in the sample.

care actions recorded were classified into seven common categories adapted from those reported by Piper (1989): (1) modification/alteration in patterns of activity and rest; (2) psychological strategies; (3) attempting to preserve normality; (4) relieving symptoms and providing comfort; (5) social interventions; (6) nutritional strategies; and (7) alteration in sleep/ waking patterns. The number of subjects employing these classes of self-care action and the number of actions recorded in each category are displayed in Table 1.

Modification of activity and rest patterns was the most common action taken by patients to relieve their

The effectiveness of self-care

The self-care activities initiated by the patients proved largely ineffective, providing only partial relief on 53.7% of occasions and no relief on 9.4% of occasions. Complete or nearly complete relief from fatigue were derived from the self-care action on only 11.5% and 25.5% of the time respectively. Subjects failed to document the effectiveness of their actions on only 22 of the 693 occasions when self-care activities were recorded.

Table 2 reports the most common activities per-

Table 1 Categories of self-care behaviours: number of observations and median effectiveness ratings

Category of self-care and percentage of subjects employing the action

Modification or alteration in activity and rest pattern

83.6%

Alteration of sleepwake pattern 37.0%

Psychological strategies

24.1%

Social interventions

17.8%

Preservation of normality

13.7%

Nutritional interventions

6.9%

Relief of symptoms and comfort measures

4.1%

Self-care strategy Number of occasions recorded for category

Rest and napping Taking things easy Modifying activities Walking Gardening

}41 I

Going to bed early Sleeping most of the day

166

Listening to relaxation tapes Listening to music Reading Watching television Counselling Homeopathic remedies Acupuncture Relaxation

}I03

Engaging in hobbies Holding a worthwhile conversation Performing amateur dramatics Having dinner and drinks Attend cinema or theatre

139

Going to work Doing household chores Going shopping Writing letters or articles Cooking

154

Adding liver to diet Taking a soothing drink Altering timing of meals

111

Taking medication for chronic conditions Taking anti-emetics Hot bath Calling the doctor

19

*Effectiveness of self-care actions was recorded on a 4-point scale where 1 =not relieved, 2 =partly relieved, 3 =nearly completely relieved and 4 = completely relieved.


formed by the subjects and their average effectiveness. The most usual action, although there was no evidence to support that it was the most effective, was resting or napping during the day. In addition, many subjects read, took exercise, watched television or retired to bed early. All activities attained a median effectiveness rating of 2, and hence provided only partial relief from fatigue. However, there was a wide range of scores for each self-care activity used, indicating variability among subjects as to the effectiveness of the strategy.

When the subjects documented the reason for their chosen activity, they generally stated that their selection seemed the most natural and sensible course of action. On very few occasions their ideas originated from the advice of others, including family members (2.8%), friends (1 X), nurses (1.4%) or medical staff (1.2%). However, subjects failed to complete this item on 197 of the 693 occasions.

Relationship between fatigue and the performance of self-care

The Mann-Whitney test was used to explore possible associations between the fatigue scores and the performance of self-care. The subjects were divided into two groups according to whether they performed self-care or not, and the mean fatigue scores for these two groups were compared. These results, reported in Table 3, show that the degree to which fatigue interfered with daily and social activities was significantly related (PcO.05 [one-tailed test]) to the performance of self-care. Conversely, the data did not support a statistically significant relationship between either the extent of fatigue, or the distress which it caused, and the performance of self-care.

Discussion

The diary proved an effective approach to data collection in this study, providing subjects with a mech- anism to record responses on a daily basis which could then be quantified. It is acknowledged that little is known about the psychometric properties of this approach to data collection (Richardson, 1994). How- ever, as the method is less likely to be prone to the inaccuracies of recall, it is likely to provide more valid and reliable descriptions of frequent events than an interview. Validity is difficult to assess but informal interviews with the subjects about the presence of fatigue and the performance of self-care during the diary time frame were undertaken. These provided evidence of those actions which patients accorded as being significantly helpful and were compared with diary recordings. Patients were always able to recall a successful strategy at interview, where one had been undertaken. Although the results have not been reported here, there was expected divergent and con- vergent validity of the fatigue VASs with items on a mood rating scale [the Mood Adjective Checklist

Table 2 Frequency of patients performing self-care when they are fatigued on a daily basis

Most frequently recorded self-care Median effectiveness actions (number of recordings) rating*

Rest/napping during the day (336) 2 Reading (47) 2 Walking (35) 2 Watching television (32) 2 Sleeping for most of the day (3 1) 2 Went to bed early (28) 3 Undertaking household chores (26) 2 Having a worthwhile conversation (17) 2 Gardening (15) 2 Going to work (14) 2 Engaging in social activities (13) 2

*Effectiveness of self-care actions was recorded on a 4-point scale where 1 =not relieved, 2=partly relieved, 3=nearly completely relieved and 4 = completely relieved.

(Lishman, 1972)], and the Holmes (1989) Symptom Distress Scale (Richardson, 1995).

This study suggests that although chemotherapy regimes are becoming increasingly sophisticated, fatigue remains a common and distressing problem for patients receiving this form of treatment. In addition, patients receiving continuous chemotherapy as well as 3-weekly bolus doses (ECF regime) were significantly more fatigued than those receiving either l- or 4- weekly treatments. Over half of the sample in this study had reached the advanced stage of their illness. This makes it difficult to evaluate whether the fatigue patients were experiencing was due to the chemotherapy drug treatment or due to the advanced nature of their disease. Future studies might explore the prevalence and correlates of fatigue in patients with advanced cancer, as compared with those with limited early stage disease.

However, despite the prevalence of fatigue, the patients appeared to make few attempts to either control or alleviate it. This apparent paradox has been documented in previous research by Dodd (1982, 1984, 1987). When the relationship between fatigue and self- care was investigated, two dimensions of fatigue were

Table 3 Results from the Mann-Whitney test exploring the association between the dimensions of fatigue and self-care

Dimensions of fatigue U value P value*

Mean fatigue score 127 367 <O.Ol Extent of fatigue 129 821 NS Distress from fatigue 135 341 NS Degree to which fatigue interfered 125 421 <0.05 with daily activities/chores Degree to which fatigue interfered 118 156 10.01 with hobbies/social activities

*NS =Not significant.


found to be significantly associated with the performance of self-care: the degree to which fatigue interfered with daily activities and chores; and the degree to which it interfered with leisure activities. This indicates that patients perform self-care to relieve fatigue when it becomes disruptive to their daily lives. Conversely, there was insufficient evidence to support a significant association between self-care and either the extent of fatigue or the distress that fatigue caused. This is interesting and rather than posing a threat to validity, may indicate that the different dimensions of fatigue assessed in this study exert particular influ- ences on a patient’s inclination to perform self-care.

Rhodes et al. (1988) investigated the relationship between symptoms and self-care. Their results suggest that patients’ willingness to perform self-care is influ- enced by their perception of their symptoms. Accord- ing to Rhodes et al. (1988) symptoms which are ‘illness-related’, and they provide weakness and fatigue as examples, require patients to modify their behaviour to maintain their normal self-care function and allow them to continue with valued activities. Conversely, ‘sick’ patients with ‘disease-related symptoms’, such as nausea and vomiting, frequently require medical or nursing treatments and these individuals feel less predisposed to engage in self-care. The data from this study indicate that most patients considered fatigue to be associated with their disease and its treatment, and were disinclined to perform self-care. This interpretation of fatigue may have been intensified by health care professionals who frequently attribute fatigue to chemotherapy (Fernsler, 1986). Theories of self-care have been developed and extended over the last three decades. The existence of a complex relationship between self-care and fatigue is suggested by the findings from this study.

The patients recorded few actions in their diaries which were employed to alleviate fatigue. However, the patients in the study may only have documented those actions which they regarded as being out of the ordinary or particularly effective. Commonplace activities including resting, or the re-organisation and pacing of activities, may frequently have been omitted. This might account for the relatively low number of self-care entries recorded in the diary. The most common of these were resting, napping and modification or alteration of activities. These are similar to the cumulative unpublished results reported by Piper (1989) and Dodd (1988). Rhodes et al. (1988) also found that prescheduling essential activities and avo- iding those of a nonessential nature was helpful. It would appear the American and British patients frequently adopt the same strategies when seeking relief for fatigue. Comparison with Piper’s data is made difficult by the fact that she reports that responses were derived from a combination of retrospective open-ended questioning and a secondary analysis of patient-maintained self-care behaviour logs. Some patients were particularly resourceful and employed inventive actions, for example participating in ama-

teur dramatics. But these actions proved no more effective for the relief of fatigue than the more commonplace ones, providing only partial relief from fatigue. Previous research has reported the ineffectiveness of the actions taken by patients to relieve fatigue (Dodd, 1982, 1984, 1986, 1988). Research exploring reasons underlying the choice of particular strategies and the processes of problem solving when behaviours which were first chosen prove ineffective would be valuable.

The investigators whilst categorising self-care strategies, for example as to whether they were considered behaviours to be psychological in nature as opposed to as an attempt to preserve normality, may have misrepresented the subjects’ rationale in their attempts to relieve fatigue. Future work should try to uncover the reasons why patients undertake particular strategies and why they consider that they hold potential to be effective.

The prevalence of fatigue, and ineffectiveness of patients’ strategies, suggest that health care professionals need to assist patients in their management of fatigue. However, the data from this study suggest that patients are presently receiving little advice and support from health care professionals to enable them to manage fatigue effectively.

More work needs to be done to elicit whether patients initiate both proactive and reactive self-care behaviours in response to fatigue. Some actions may have been taken by them which proved effective, halt- ing the onset of fatigue. Future research comparing the incidence and effectiveness of proactive and reactive self-care actions will expand nursing knowledge of strategies for the management of fatigue. Fur- thermore, these studies would pave the way for intervention studies which could contribute to determining the optimal package of nursing care for the relief of fatigue in patients receiving chemotherapy.

Conclusion

This study used a longitudinal research design to investigate the fatigue experienced by patients receiving chemotherapy, and to explore the self-care measures taken by them to relieve their fatigue.

Fatigue was shown to be a prevalent and disruptive symptom--disrupting patients daily lives and marring their enjoyment of leisure pastimes. When these activities were sufficiently disrupted, patients initiated self- care activities to help them to manage their fatigue and allow them to continue with their usual activities. However, these measures proved largely inadequate, providing only partial relief. The activities were generally chosen by the patients because they seemed sensible. This study indicates that common-sense measures are insufficient and that patients require the advice and guidance of medical and nursing staff to enable them to live with and adapt to fatigue. Further research needs to be conducted to identify effective

42 A. Richardson and E. K. Ream/Self-c

means of managing fatigue, and to determine the effectiveness of these through experimental research.

References

Aistars, J. (1987). Fatigue in the cancer patient: a conceptual approach to a clinical problem. Oncol. Nun. Forum 14(6), 25-30.

Cassileth, B., Lusk, E., Bodenheimer, B., Farber, J., Jochimsen, P. and Morrin-Taylor, B. (1985). Chemotherapy toxicity-the relationship between patients’ pre treatment expectations and post treatment results. Am. J. Clin. Oncol. 8,419425.

Dodd, M. (1982). Assessing patients’ self-care for side- effects of cancer chemotherapy. Cancer Nuts. 5(6), 44745 1.

Dodd, M. (1983). Self-care for side-effects in cancer chemotherapy: an assessment of nursing interventions. Cancer Nurs. 6(l), 63-67.

Dodd, M. (1984). Patterns of self-care in cancer patients receiving radiation therapy. Oncol. Nurs. Forum 11(3), 23-27.

Dodd, M. (1986). Self-care in patients with cancer. In Issues And Topics In Cancer Nursing (McCorkle, R. and Hongladorom, G., Eds), pp. 225-238. Apple- ton Century Crofts, Norwalk, Connecticut.

Dodd, M. (1987). Efficacy of proactive information on self-care in radiation therapy patients. Heart and Lung M(5), 538-544.

Dodd, M. (1988). Patterns of self-care in patients with breast cancer. Western J. Nurs. Res. 10(l), 7-24.

Dodd, M. (1990). An emerging theory of family self- care. Oncol. Nurs. Forum Suppl. 17(2), 226 (Abstract 356a).

Faithfull, S. (1992). The diary method for nursing research: a study of somnolence syndrome. Eur. J. Cancer l(2), 13-18.

Fernsler, J. (1986). A comparison of patient and nurse perceptions of patients’ self-care deficits associated with cancer chemotherapy. Cancer Nurs. 9(2), 5@ 57.

Forester, B., Kornfeld, D. and Fleiss, J. (1985). Psychotherapy during radiotherapy: effects on emotional and physical distress. Am. J. Psychiut. 142,22-27.

Freer, C. (1980). Self-care: a health diary study. Medi- cal Care 18(8), 853-861.

Holmes, S. (1989). Use of a modified symptom distress scale in assessment of the cancer patient. ht. J. Nurs. Stud. 26(l), 69-79.

Levin, L., Katz, A. and Holst, E. (1979). Self-care: Lay Initiatives in Health. Prodist, New York.

Lishman, W. (1972). Selective factors in memory. Part 2: Affective disorders. Psychol. Med. 2, 248-253.

MacVicar, M. and Winningham, M. (1986). Pro- moting functional capacity of cancer patients. Cun- cer Bull. 38(5), 235-239.

MacVicar, M., Winningham, M. andNickel, J. (1989). Effects of aerobic interval training on cancer patients’ functional capacity. Nurs. Res. 38(6), 348- 351.

McCorkle, R. (1983). Nurses as advocates for self- care. Cancer Nurs. l( 17) editorial.

Meyerowitz, B., Sparks, F. and Spears, I. (1979).

:are by fatigued chemotherapy patients

Adjuvant chemotherapy for breast carcinoma: psy- chosocial implications. Cancer 43, 1613-1618.

Nail, L. and King, K. (1987). Fatigue... a side effect of cancer treatments. Seminars Oncol. Nurs. 3(4), 257-262.

Nail, L., Jones, L., Greene, D., Schipper, D. and Jensen, R. (1991). Use and perceived efficacy of self- care activities in patients receiving chemotherapy. Oncol. Nurs. Forum 18(5), 883-887.

Nerenz, D., Leventhal, H. and Love, R. (1982). Fac- tors contributing to emotional distress during cancer chemotherapy. Cancer 50, 1020-1027.

Orem, D. (1971) (1980) (1985). Nursing: Concepts of Practice, 1st 2nd and 3rd Edns. McGraw Hill, New York.

Orem, D. (Ed.) (1979). Concept Formalisation in Nurs- ing: Process and Product, (Nursing Development Conference Group). Little and Brown Company, Boston.

Orem, D. (1991). Nursing Concepts of Practice, 4th Edition. Mosby Year Book, St. Louis.

Piper, B. (1989). Fatigue: current bases for practice. In Key Aspects of Comfort: Management of Pain, Fatigue and Nausea, (Funk, S., Tornquist, E., Champagne, L., Archer Copp, L. and Wiese, R., Eds), pp. 187-198. Springer, New York.

Piper, B., Lindsey, A., Dodd, M., Ferketich, S., Paul, S. and Weller, S. (1989). The development and test- ing of an instrument to measure the subjective dimension of fatigue. In Key Aspects of Comfort: Management of Pain, Fatigue and Nausea (Funk, S., Tornquist, E., Champagne, L., Archer Copp, L. and Wiese, R.), pp. 199-208. Springer, New York.

Questad, K., Malec, J., Harvey, R., Kienker, R. and Romsaas, E. (1982). Rehabilitation programme for cancer related fatigue: an empirical study. Arch. Physical Med. Rehab. 63, 532.

Radiewicz, R. and Schnieder, S. (1992). Using diversional activity to enhance coping. Cancer Nurs. 15(4), 293-298.

Rakowski, W., Julius, M., Hickey, T., Verbrugge, L. and Halter, J. (1988). Daily symptoms and behav- ioural responses: results of a health diary with older adults. Medical Care 26(3), 278-297.

Rhodes, V., Watson, P. and Hanson, B. (1988). Pat- ients’ descriptions of the influence of tiredness and weakness on self-care abilities. Cancer Nurs. 11(3), 186194.

Richardson, A. (1992). Studies exploring self-care for the person coping with cancer 17 treatment: a review. Int. J. Nurs. Stud. 29(2), 191-204.

Richardson, A. (1994). The health diary: an exam- ination of its method as a data collection method. J. Adv. Nurs. 19, 782-791.

Richardson, A. (1995). Patterns of fatigue in patients receiving chemotherapy. Unpublished PhD Thesis, King’s College London.

Spiegel, D., Bloom, J. and Yalom, I. (1981). Group support for patients with metastatic cancer: a ran- domised prospective outcome study. Archs Gen. Psychiat. 38, 527-533.

St, Pierre, B., Kasper, C. and Lindsey, A. (1992). Fatigue mechanisms in patients with cancer: effects of tumour necrosis factor and exercise on skeletal muscle. Oncol. Nurs. Forum 19(3), 419425.

Strauman, J. (1986). Symptom distress in patients


receiving phase 1 chemotherapy with Taxol. Oncol. Nun. Forum 13(5), 40-43.

Todres, R. and Wojtuik, R. (1979). The cancer patients’ view of chemotherapy. Cancer Nun. 2(4), 283-286.

Weisman, A. (1976). Early diagnosis of vulnerability in cancer patients. Am. J. Med. Sci. 271(2), 187- 196.

Wills, C. and Moore, C. (1994). A controversy in scaling of subjective states: magnitude estimation versus category rating method. Res. Nurs. Health 17(3), 23 l-237.

Winningham, M., MacVicar, M. and Johnson, J. (1985). Response of cancer patients on chemotherapy to a supervised exercise programme. Med. Sci. Sports Exercise 17, 292.

Self-care behaviours initiated by chemotherapy patients in response to fatigue

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