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MICHIGAN SUTATE

ILHIHHIIIUI

l'1293 00880 2861M" L

 

 

 

 

 

 

 

 

 

                                                       

This is to certify that the

thesis entitled
The Relationship Between Fatigue in the
Caregiver of the Cancer Patient and Caregiver

Characteristics and Process of”Care
presented by‘
0

Susan Lynne Jensen

has been accepted towards fulfillment
of the requirements for

Mas ter o—f—Se—i—en-ee— degree in _Nm:sing_

flaw/51w

Major professor

Date 9/;25 lea
/ /

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

LIBRARY
Mlchtgan State
University

qu-w‘-m -

 

 

PLACE IN RETURN BOX to remove this checkout from your record.
TO AVOID FINES return on or before date due.

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==ll—‘

MSU Is An Affirmative Action/Equal Opportunity Institution
czwImw-dtnma-m

 

 

 

 

THE RELATIONSHIP BETWEEN FATIGUE IN THE CAREGIVER
OF THE CANCER PATIENT AND CAREGIVER
CHARACTERISTICS AND PROCESS OF CARE

By
SusanLynneJensen

ATHESIS

Submitted to
Michigan State University
in partial fulfillment of the reqmrements
for the degree of

MASTER OF SCIENCE IN NURSING

Department of Nursing

1990

ABSTRACT
THE RELATIONSHIP BETWEEN FATIGUE IN THE CAREGIVER

OF THE CANCER PATIENT AND CAREGIVER
CHARACTERISTICS AND PROCESS OF CARE

By
Susan Lynne Jensen

The purpose of this study is to investigate and describe the experience to
fatigue in the caregiver of the cancer patient in relation to the characteristics of the
caregiver: caregiver age and employment status, and in relationship to the process
of caregiving: number of hours of care reported, the duration of caregiving, and
the impact of caregiving upon the caregiver’s schedule.

A sample of 248 caregivers of cancer patients participating in the Family
Homecare Study were surveyed by means of the Piper Self- Report Fatigue Scale, a
visual analogue scale, regarding fatigue experienced related to the caregiving roles.
The results were analyzed using the Pearson Product Moment Correlation technique
to determine potential relationships. There was a positive, significant relationship
between the number of hours of daily care reported and experienced fatigue, and
between impact on caregiver’s schedule and fatigue. A relationship was also found
between fatigue and caregiver age and employment status when using the Ways to
Combat Fatigue Scale, a subscale of the total fatigue scale.

Caregiver fatigue and fatigue in general is a concept that needs much more
research. Furthermore, the nursing profession needs to develop appropriate

interventions for those persons presenting with the complaint of fatigue. Only with

Susan Lynne Jensen
a more thorough understanding of the concept of fatigue and appropriate treatment
methods will the nursing profession be able to most effectively treat those persons

presenting with this complaint.

Copyright by
SUSAN LYNNE JENSEN
1990

ACKNOWLEDGMENTS

I would like to acknowledge and thank Dr. Barbara Given and Dr. Charles
W. Given for allowing me to use data from the Family Homecare Cancer Study for
this thesis, and for being on my thesis committee. I would also like to thank Dr.
Rachel Schiffman and Patty Peek, MSN for their time, assistance and encourage-
mentinhelping metocompletethisthesis, withaspecialthankstoDr. Barbara
Given for chairing my committee.

Further, I would like to thank my family - Jim, Jennifer, Jason and Jamie
for their patience, understanding and support in helping me to complete this project.

iii

TABLE OF CONTENTS

LIST OF TABLES
LIST OF FIGURES

CHAPTERI

Introduction

Statement of the Problem
Purpose

Research Questions
Definitions of
Assumptions of the Study
Limitations of the Study
Overview of the Study

CHAPTER II

Framework
Nursing Framework

CHAPTEIIII

Fatigue

Fatigue Research
Caregiving and Fatigue
Caregrvmg

Summary

CHAPTERIV

Sample
Data Collection Procedures
Operational Definitions of the Study Variables
Fatigue
Impact on Schedule
Processes of Caregiving
Characteristics of the Caregiver
The Instruments
Scoring

iv

WQQGMMAH

10
10
12

36

38
39
39
39

41
41
42

Pretest of the Instruments
Analysis of the Data
Protection of Human Rights
Summary

CHAPTERV

Data Presentation

Overview
Descriptive Analysis of Data

Study Sample

Sociodemographic Descriptors
Descriptive Data Related to Fatigue Self-Report Scale
Reliability of the Instruments
Presentation of the Data Related to the Research Hypothesis
Discussion

Discussion of the Data Relating to the Research Hypothesis
Summary

CHAPTHIVI

. Summary, Interpretations, and Implications of Findings
Overview
Summary of Findings
Statement of Conclusions
Discussion of Conclusions
Limitations
Recommendations
Implications for Nursing Practice
Recommendations for Nursing Education
Recommendations for Future Research

Summary

APPENDICES

AppendixA
AppendixB

ixC
AppendixD
AppendixE

REFERENCES

8833382

111

QOtUt-FQNt-t

LIST OF TABLES

Distribution of Caregiver Age

Distribution of Caregiver Education

Distribution of Household Income

Distribution of Duration of Caregiving in Months
Distribution of Hours of Daily Care

Distribution of Mean Fatigue Scores for Caregivers

Mean & Standard Deviation for Individual Items
of Total Fatigue Scale

Correlation of Study Variables to Fatigue

vi

47

49
50
51

53

55

LIST OF FIGURES

King’s Model
Predictors of Fatigue

King’s Model - Updated

vii

15
69
70

CHAPTERI

mm

Tremendous change hasoccurred inthedeliveryofhealth care overthe
past few years. Continuedchange is inevitable for several reasons including the
ever changing dictates of the insurance industry, advanced modern technology,
increased life span and the trend for family members to care for individuals with
chronicdisease inthe homesetting. Overall, atleast3.5 millionAmericansare
chronically ill or disabled and need medical or support services for an extended
period of time (Lopez, 1988). .

Acaregiver, asdefinedbyHirstandMetcalf(l986), is 'onewhoattempts
to meet the physiological and psychosocial needs ofthe individual" (p. 24).
Dependinguponthenatureofthefamilymember’sillness, caregivingcanbea
twenty four hour a dayjob. Caregiving demands can be defined as ”difficulties or
challengeswith respecttoprovidingathomecaretoafamilyns-ber. Caregiving
demandsareproposedtohave fourdimemions: physical care, psychosocial
concerns role alterations, and financial alterations' (Stetz, 1987, p. 260).

The fourdimensionsofcaregivingincreasethefatigueexperiencedbythe
caregiver (Stetz, 1987). The Stetz study (1987) of caregiving demands during
advancedcancerfoundthatmale caregiversexperiencedgremerdifficultyin
managing the household, while female caregivers experienced greater difficulty
with observing their ill mate experience physical symptoms.

Theprevalence ofcancerinthepopulationmakesitoneofthemajorhealth
problems in this country. The probability at birth of developing cancer before the

age of seventy-five is approximately twenty percent in both men and women,
indicative of a high level of morbidity in the population (Hinds, 1985). Cancer is
estimated to affect approximately two out of three American families (Hinds,
1985; Vess, Moreland & Schwebel, 1985).

The diagnosis of cancer creates a profound psychological disturbance in
most, if not all, people. Emotional distress is, in part, an understandable and
realistic response since, notwithstandingadvancesintreatment, cancermaystill
entail grave consequences for the individual and family. Nevertheless, public
attitudestowardcanceraresuchthatthediagnosisinducesinmanypemoma
foreboding greater than that of other diseasescarrying equally serious or worse
prognoses (Greer & Silberfarb, 1982; Lewis, 1983; V‘mokur, Threatt, Caplan &
Zimmerman, 1989). .

Asthediseaseprocessofthepatientprogresses, thecaregiverlearnstogive
the necessary emotional, physical and psychological care needed to support his/her
family member. The health care profess’onal must learn to adequately support
boththepatientandthecaregiver. Muchstillneedstobe learnedabout howthe
funcfionalaspectsofcaregivingnotoflyinfluencebutalsoammfluencedbythe
physical and psychological states of the caregiver.

Becausethe fourdimensiomofcaregiving mayaddtensiontothe family
dynamics and alter family lifestyle (Stetz, 1987), caregivers often admit to
experiencing overwhelming fatigue (Goldstein, Regnery & Wellin, 1981). The
added responsrhilities inherent in the process of caregiving add to the caregiver’s
fatigue. Fatigue, :1 universal experience, may be one of the most prevalent
feelings reported inbothphysicalandmentalconditionsofthehumanbody. This
feeling precedes and accompanies most pathological conditions, but it is also

reported to varying degrees in the well population (Piper, Lindsey & Dodd, 1987).
Despite this, the concept of fatigue is neither clearly defined nor well understood.

In order to measure fatigue, one must first arrive at an appropriate
definifionoftheconceptanddeterminewhichofitsaspectswinbemeasured.
Faigue can be acute, the result of recent work performance, or chronic, caused by
a complex interplay of both somatic and psychological factors (Potempa, Lopez &
Reid, 1986). Various authors have provided descriptions of fatigue taken from
pathology, physiology and psychology. “Pathology views fatigue as an indicator
of neuromuscular or metabolic disorders. Physiological fatigue is a decrease in
physical performance. Psychological fatigue affects the whole organism,
including mental and physical aspects“ (Varrichio, 1985, p. 122). Fatigue is
sometimes used synonymously with feelings of anxiety, uncertainty, nervousness,
tension and depletion. While these factors may be components, fatigue describes a
'feelingofinabilitytomobilizetheenergytocarryon . . Lisassociatedwith
feelings of depression, helplessness, hopelessness, and apathy“ (Morris, 1982, p.
266). Piper (1985), a leading nurse researcher in the area of fatigue, developed a
working definition of fatigue. ”Fatigue, from a nursing perspective, is defined as
asubjective feeling oftiredneasthatisinfluencedbycircadianrhythm. Itcanvary ‘
in pleasantness, intensity and duration. When acute, it serves a protective
function; when it becomes unusual, excessive or constant (chronic), it no longer
serves this function and may lead to aversion to activity with the desire to escape”
(p. 12).

Until recently, health care providers have sought methods to relieve fatigue
of patients only, however, the experiences of caregivers of both terminal and
chronically ill patients have begun to be researched (Given, Collins & Given,

1988; Hinds, 1985; Stetz, 1987). Fatigue is an often reported feeling in the

caregiver population (Ekberg, Griffin & Foxall, 1986; Goldstein et al., 1981;
Goodman, 1986). Chronic fatigue is often attributed to the strain of psychosocial
concerns, financial concerns, role alterations and added physical care inherent in
caregiving (Goldstein et al., 1981). The strain of caregiving and the increased
temionoftenevideminfamflydymmicsarebothforemnnersofandconconutam
with fatigue (Mitchell, 1986; Morris, 1982). The resultant fatigue inherent in the
four dimensions of caregiving, is handled uniquely by each individual family
member. Caregiving activities often add excessive or intolerable pressures to the
caregiver and thus result in increased caregiving demands (Stetz, 1987).

W

Understanding the magnitude of the problems facing those persons
undergoing treatment for cancer and their caregivers is imperative for today’s '
healthcareproviders. Fatigueofboththecaregiverandthepruzientisanoften
reportedsymptom inmuchofthecancerliterature. Because fatigueisasubjective
feeling, ithasbeenhardtodefine, andthereforehardtomeasureandaccurately
manage and treat (Piper, 1985).

Certaincharacteristicsofthecaregivermayhave aninfluenceonthe
fatigue experience. These caregiver characteristics include, but are not limited to,
thesexofthecaregiver, theageofthe caregiver, the numberofrolesinwhich the
caregiver functions, whether the caregiver is employed, and if employed, whether
this employment is full time or part time. For the purpose of this thesis, the
caregiver characteristics to be considered are the age of the caregiver, and the
employment status of the caregiver.

The process of caregiving may also have an impact on the fatigue
experience (Hinds, 1985; Stetz, 1987; Goldstein et al., 1981). The aspects of the

caregiving process to be considered in this thesis are: the average number of hours
of care reported each day, the duration of the caregiving experience, and the
impact of caregiving upon the caregiver’s schedule.

Theproblemaddreasedinthisstudyistoexaminetherelationshipbetween
theexpefienceoffatiguerepofledbythecaregiverofthecancerpafiemandthe
hours of care, the duration of caregiving, the impact on schedule, age and
employment status of the caregiver. By utilizing the information gained, the
health care professional might be able to understand how to better support the
caregiver.

Emu

Thepurpose ofthisstudyistoinvestigateanddescribetheexperienceof
fatigue in the caregiver ofthe cancer patient in relation to the characteristics of
thecaregiver: caregiverageandemploymentstatus, andinrelationtothe process
of caregiving: number of hours of care reported, the duration of caregiving, and
the impact of caregiving upon the caregiver’ s schedule. By increasing our
understanding of the experience of fatigue upon the caregiver, the health care
professional will have an increasedunderstanding ofhowtobettersupport the
caregiver and assist him/her with the added responsibilities of caregiving.

W
The research questions for this study are as follows:

1) Istherearelatiornhipbetweenreported fatigueandageinthe
caregiver of the cancer patient?

2) Is there a relationship between reported fatigue and employment
statusinthecaregiverofthecancerpatient?

3) Is there a relationship between reported fatigue and average number
ofhoursofdailycare inthe caregiverofthe cancerpatient?

4) Is there a relationship between reported fatigue and duration of the
caregiving experience in the caregiver of the cancer patient?

5) Is there a relationship between reported fatigue and the impact upon
the caregiver’s schedule in the caregiver of the cancer patient?

W
The concepts defined are fatigue, cancer patient, caregiver, the
characteristics of caregiver, and the process of caregiving.

Eating. Fatigue, fromanursing perspective, isdef‘medasasubjective
feelingoftirednessthatisinfluencedbycircadianrhythm. Itcanvaryinintensity
andduration. Whenacute,itservesasaprotectivefunction;whenitbecomes '
unusual, excessive orconstant (chronic) it no longer serves this function and may
leadtoaversiontoactivitywiththedesiretoescape(Piper, 1987).

W. Those individuals diagnosed with cancer, over the age of
eighteen,.who are currently undergoing some form of treatment such as radiation
therapy, or chemotherapy for either new or recurrent disease, and currently are
being cared for in the home.

Myer. An individual family member who reports providing physical,
emotional, psychological and spiritual assistance and support for the cancer patient
in the home setting.

W. Attributes inherent in each caregiver which
may or may not influence caregiving role performance. Those characteristics to be

considered in this thesis are age and employment status ofthe caregiver.

W. Anongoingmethodbywhichthecaregiver
provides the physical, Monal, psychological, and spiritual assistance and
supporttothepatientasnecessary. Theaspectsoftheprocessofcaregivingtobe
consideredinthisthesisaretheaveragenumberofhoumofcarereponedeach

day, the duration of the caregiving experience, and the impact upon the

caregiver’s schedule.

Willem:

The assumptions for this study are as follows:

1)

2)

3)

4)

Thecaregivers’ answerstothequestionsaskedreflecttheirtnre
feelings.

The subjective feelings of fatigue can be measured by means of an
amlogue scale.

Fatigue in caregivers exists and the intensity of fatigue varies from
timetotime.

Stress leads to fatigue.

W

The limitatiom of this study are as follows:

1)

Caregiverswhoagreetoparticipateinthisstudymaybe different
from those who refuse participation. Therefore, research findings
maynotbe representativeofallcaregiversofcancerpatients.

2)

3)

4)

5)

The fatigue scale may be difficult to understand and use for some
caregivers, especially those with low literacy levels.
Theremaybeinterveningvariablesthatarenotcontrolled forand
will notbe measured inthis study.

The validity, both construct and content, of Piper’s Self- Report
Fatigue Scale has not been established for the caregiver population.
Piper’s Self-Report Fatigue Scale was developed and tested in cancer
patientsandhasMbeentestedonthewellpopulationorinthe
caregiverpopulation.

Thesubjective feelingsoffatiguearemeasuredatonepoirrtintime
and may notbe reflective of true feelings of caregivers over time or
atotherpoints intime.
Thecaregiverswerenotinstnrctedastoanyspecifictimetofrllout
the fatigue questionnaire, therefore, some mayhave filled it out in
earlyAM, whileothersmayhave filled itoutattheendofalong,
tiring day. thereby giving misleading mm:-

W

The studyispresentedinsixchapters. The firstchapterintroducesthe
problem, need for the study, purpose forthe study, statement of the problem,
research questions, definition of the concepts, limitations and assumptions of this
study. In Chapter II, the conceptual framework and the concepts of fatigue and
caregiving of cancer patients are described. The relationship of these concepts to

nursingtheoryisdiscussed. AreviewoftheliteratureispresentedinChapterIII.

The method, data collection procedure, instruments utilized, reliability and

validity, data analysis and interpretation, source of subjects and human rights are

presentedinChapterIV. Thepresentationofthedataanalysisispresentedin
ChapterV,andinChapterVI,theresultsofthe studyarediscussed.

CHAPTERII

Wreath

Thepurposeofthischapteristopresenttheconceptualframeworkupon
whichtheresearchwasbased. Abriefdiscussionoftheconceptsofcancer,
caregiving, and caregiver fatigue is included. The relationship of these concepts
to Imogene King’s nursing frameworkisthenpresented, accompanied by the
modelforthecurrentstudy.

Thediagnosisofcancerhasamajorimpactupontheentirefamilyaiinds,
1985; Oberst & Scott, 1988; Oberst &James, 1985). Families playan important
mleinassessingtheneedsandpmvidmgthehomecarenecessaryforthecancer
patientathome. Theabilityoffamilymemberstoassumetheadditional
responsibilities for patient care at home varies as do the ill member’s manifestation
of needs. Thefamily’s abilitytoadapttoits roleascaregiverdependsupon the
resources available within the family unit and within the larger social support
system(Hinds, 1985).

Aftertheinitialshockanddisbeliefofthecancerdiagnosis,howapatient
andhiscangiverviewanddealwimthediseasemaybedepmdemuponthemental
healthstatusofthebothpersonsCNorthouse, I984). The distress sometimes
admessedbyhealthcarepmvidersinthecaregiverandthecancerpatiemhas
numerouscauses. Cancercanbelifethreatening;itscourseineachpersonis
differentanduncertain. Thediseaseprocessoftencausesbothphysicaland
emotional discomforts, and, as a chronic illness, may require long term treatment.

10

11

This long term treatment poses numerous adaptive tasks for patients and families,
and may drastically change current family lifestyles.

Fatigueisafrequentlyreportedsymptominboththecancerpatiemmme
caregiver. Fatigue in the patient, is, in part, physiologically induced, by both the
disease process and the treatment regimen (Haylock & Hart, 1979; Mitchell, ‘
1986). However, fatigue can also be induced in both the patient and the caregiver
bythe apprehension relationtothediagnosis, treatment regimen, andthe resultant
change in family dymmics (Morris, 1982). The body’s physiological responses
relating to this apprehension lead to an increase in the amount of fatigue
experienced because of the body’s increased energy expenditure (Selye, 1976).
Therefore, fatigue in the caregiver can be physically induced by the physical
demands of the caregiving experience, and psychologically induced by
apprehensionregardingthediagnosis,treatment, andprognosisofthecancer
patient.

The fatigue described by the population of caregivers of cancer patients
needs to be explored so that the health care providers can more effectively support
boththe patientandcaregiverbyalleviatingand managingthe fatigue. If
caregiver fatigue is dependent upon such factors as the age of the caregiver, the
number of hours of caregiving, employment status, duration of the caregiving
status, or the impact of caregiving upon the caregiver’s schedule, then the health
care provider would initiate appropriate nursing interventions to best alleviate the
reported fatigue, thus supporting the caregiver.

Thepurposeofthisstudyistoinvestigateanddescribetheexperience of
fatigue in the caregiver of a cancer patient in relation to the characteristics of
caregiving, such as age and employment status, and the process of caregiving, such
as the number of hours of daily caregiving reported, the duration of caregiving,

12

and the impact of caregiving upon the caregiver’s schedule. This can be explored
bythe following questions: Isthere a relationship between reported fatigue and
ageinthecaregiverofcancerpatient? Istherearelationshipbetneenreported
fatigueandemploymentstatusinthecaregiverofthecancerpatient? Istherea
relationship between reported fatigue and average number of hours of daily care in
thecaregiverofthecancerpatient? Istherearelationshipbetweenreported
fatigueandduration ofthecaregiving experience? Istherearelationshipbetween
reported fatigueandthe impact uponthecaregiver's scheduleinthecaregiver of
thecancerpatient?
Theconceptualframeworkforthisstudyisbasedontheconceptsof
caregiverfatigue,andcaringforcancer patients,andincludesadiscussion of the
relationship between caregiver fatigue to the subconcepts of characteristics of the
caregiver: ageandemploymentstatusofthecaregiver,andtotheproceasof
caregiving: number ofhoursof daily caregiving,theduration of caregiving, and
theimpactofcaregivinguponthecaregiver’sschedule. Theseconceptsare
discussedinrelationshiptoKing’s framework for nursing.
’I‘heframeworkforthisstudyisbasedonKing’sviewofopensystemsand
King’s model of human interaction. King’s modelhasbeenmodifiedtoshowthe
interactionbetweenthenurse,patientandthecaregiver. AdiscussionofKing’s
frameworkandintegrationwiththeproblemunderstudywillensue.

W
ThefocusofnursinginKing’smodelisbasedontheconceptofhuman

interaction. The model incorporates the idea that the goal of nursing is a concern
for the health of individuals, groups, and society. The domain of nursing,
according to King (1981), "includes promotion of health, maintenance and

13

restoration of health, care of the sick and injured, and care of the dying" (p. 4).
To coordinate the plan for delivery of health care services, the nurse collaborates
withthephysician, the family, thepatientandothermembersofthehealthcare
team. The nurse’s role, after collaboration with the appropriate health care
professionals, istoassistboththecaregiverandthepatienttosetmutuallyagreed
upon goals to alleviate the fatigue experienced by both members of the dyad, and
assistboththecaregiverandthepatiemtoimplememwpmpdateintewenfiomm
decreasethe fatigue experiencedbyboththe caregiverandthepatient. Afterthe
implementation of the appropriate nursing interventions to decrease fatigue, the
nurse’s roleistoevaluatetheoutcomesofapplied nursingprocessinlightofthe
mutualgoalssetbythepatientandthecaregiver.

Nursing science is focused on the elaboration of relationships between the
c1ients(inthiscase - patientandcaregiver)andtheenvironmentinrelationto
health (King, 1981). Imogene King’s Framework of Goal Attainment is part of
what she calls a conceptual framework for nursing. Meleis (1985) states "the
theory deals with the central questions of interaction between nurses and clients.
Kingconsideredquesfiomrehtedmthemtureofthepmcessofintemctionthat
leadtotheachievementofgoalsandthesignificanceofmutualgoal settingin
achieving nursing care goals“ (p. 231). Since King’s framework focuses on the
patient, it mustbeadapted heretoincludethecaregiverasalegitimate client of
nursing. The framework, based upon five explicit and two implicit assumptions,
addressesthe rationalityofhumanbeingsand proceedstodevelopconceptswhich
areconsistentlyrelatedtoclientswhocanperceive, interpretdata, andproblem
solve.

Implicit in King’s framework is the assumption that clients want to
participate actively in their care, and are cognitively able to participate. Explicit

14

assumptions are: clientsaresocial, rational, actionandtime oriented beings;
clientshavetherighttoobtaininformationandtoparticipateindecisionsthatmay
influence their lives and health; the health care providers have the responsibility to
inform clients adequately so the clients are able to make informed decisions;
persomhavethefightmeitheracceptorrejectanyaspectofhealthcammg,
1981).
. Kingviewshumanbeingsasopensystemsinteractingwiththe
environment, with boundariesthat are permeable to an exchange of matter, energy
andinformation. Includedintheconceptualframeworkarethreedynamic,
interactingsystems: thepersonalsystem,theinterpersonalsystem,andthesocial
system.

Thepersomlsystemisrepresentedbytheindividual. InFigure 1,the
nurse,thepatientandcaregiver,threepersomlsystems,areinustratedas
individualsbyenclosingeachinaseparatecircle. Thedottedlinesindicatethat
the individual is able to receive or share information. Included in each personal
system are characteristicsthat each individual bringstothe situation. The
charactefisficsthatthecaregiverbfingstothecaregivingsimafionanvafied, and
mostwillnotbemeasured. However,twocharacteristicsthatwillbeconsidered
inthisthesisaretheageofthecaregiver,andtheemploymentstatusofthe
caregiver, since either or both of these characteristics may influence the fatigue
thatthecaregiverexperiences.

AccordingtoKing,aninterpersonalsystemisformedwhentwoindividual
systemsinteract. Theprocessofinteractionbetweentwoormorepersons
represents a combination of both nonverbal and verbal behaviors that are utilized
toreachthedesiredgoal. Inherentintheinterpersonalsystemofthecaregiverand
thenurseisaconsiderationoftheprocessesofcaregiving. Theseprocessesof

15

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16

caregivingarerepresentedinthisstudyby: thedurationofcaregiving,thetotal
number ofhoursofcaregiving reported,andthe impct upon the caregiver’s
schedule. Thenurse’sgoalinthissituationisfor the caregivertoshareor
communicatehislherfeefingsandunderstandingwimthenumeregardingthe-
cunemwegivingsituafionandmecancerdiagnosis,treatmem,mdpmgnosisof
the patient. Any specific problems that the caregiver experiences such as fatigue,
arediscussedinrelatedmthecharacteristicsandpmcessesofcaregiving. The
nursethenassessesthe situation and, withthe caregiverand patient, assiststhe
dyad to set goals or strategiesto effectivelydeal with the fatigue problem.
Thethirdsystemisthesocialsystem. Socialsystemsareformedwhen
groupswhosharecommoninterestsandgoalsintemctwithinthesociety. These
systemscanincludethefamily,thehealthcaresystem, support groups,andwork
systemswhichcaninfluencepeopleatvarioustimesintheirlife.
Theenvironment,accordingtoKing,isalsoconceptualizedasanopen
system withpermeable boundaries which permit an exchange of matter, energy
andinformationwithhumanbeings. Thenurseneedstoassesstheenvironment
andactasafacifitatormwggestaltemtiomconducivetopromofinghealthand
healthy ways of living. King (1981) states, “the internal environment of human
beingstransformsenergytoemblethemtoadjusttocontinuousextemal
environmentchanges' (p. 5). Anyexternalenvironmental considerationsare
beyondthescopeofthisstudy.
Kingalsoobservesthatthepersoncontinuouslyadjuststostraininthe
intemalandextemalenvirmmentsmndthattheseenvimnmentsamthesoumeof
more tension. King(l981) asserts, 'satisfactionintheperformance of daily living
dependsupon harmonyandbalanceineach person’s environment" (pp. 4-5). The
external environment forthecaregiverandthecancer patient maybethehospital,

17

physician’s office, or home setting. The patient and caregiver must utilize their
owninternal environmenttocopewiththediagnoaisofcancer, andpossiblythe
initiation of treatment.

Oncetheinitialtreatmentforthediseasehasbeenconcluded, the patient
and caregiver no longer have the health care providers readily available to assist
their internal resources to cope with the external tensions (decreased ability for the
activities of daily living), and their internal temions (distress, fatigue); therefore,
the patientandcaregivermust relyonwhatevertheyhave learned from the nurse
andotherhealthcareproviderstohelpthemonceagainachieve harmonyand
balance in their environment. Additional sources of support include social support
systems such as friends, extended family, church and community agencies.

King (1981) defined health as 'dynamic life experiences of a human being
which impliescontinuousadjustmenttostreaolsintheinternalandexternal
environmentthroughoptimummeofone’sreaourcestoachieve maximum
potential for daily living“ (p. 5). Illness, according to King, is defined as 'a
deviation from normal, that is, an imbalance in the person’s biological structure or
in his psychological make-up, or a conflict in a person’s social relationships" (p.
5). Therefore, boththecancerpatientandcaregiverareexperiencingadeviation
from normal, or an imbalance in their psychological make-up, and, according to
King, areinastateofillness. Thecancerpstiemisfurtherexperiencingan
imbalance in the biological structure during the treatment and recovery period.
Theultimategoalofboththepatientandcaregiverisforthepatienttoreturntoa
stateofgood healththrougheitheracureoraremission.

King (1981) asserts, “the goals of nursing is to help individuals maintain
their health so they can function in their roles' (pp. 4-5). She defines nursing as

'Apmcessofhumanintemctionsbetweenthenurseandcfient(inthiscase,the

18

caregiver) where-by each perceives the other and the situation; and through
communication, they set goals, explore means, and agree on means to achieve
goals“ (p. 144). The nurse, then, acts as a facilitator, or one who encourages,
supportsandcoordinatesinthisinteraction(seeFigureI).
'I‘herealesixessentialvaliablestobeconsideledineach nursing situation,
which must be explored before successful facilitation by the nurse can take place.
Thesevafiablesamdescfibedinmemxtofthecaregiversimafionandudththe

caregiver as the client:
1) Geographicalplaceofthetramactingsystemmrimarycaresetting or
home)

2) Perceptions of the nurse and client (caregiver)

3) Communication of the nurse and client

4) Expectations of the nurse and client

5) Mutualgoalsofthenurseandclient

6) Nurseandclientasasystemofinterdependentrolesinanursing

situation (Fitzpatrick & Whall, 1983, p. 227).

King (1981) defines perception as 'a process of organizing, interpreting,
andtransforming informationfromsensedateandmemory; aprocessofhuman
transactionswiththeenvironment; givesmeaningtoone’simageofreality, and
influences one’s behavior” (p. 24). Therefore, the perceptions of both the nurse
andcaregiverneedtobeexploredbythenursebefomgoalsetfingcouldbegin.

Communication is, according to King (1981), I'the structure of significant
signs and symbols that blings order and meaning to human interaction' (p. 62).
The communication between the caregiver, patient and the nurse must be clear and
concise, andbaseduponadequateperceptionsofthenurseandbothmembersof
the dyad. Some universal characteristics of communication are nonverbal, verbal,

19

irreversible, situational, perceptual, andtransactional. FitzpatrickandWhall
(l983)state'Anhumanactivifiesthatfinkpersontopersontoenvimnmentare
forms of communication” (p. 233). “Whereas communication is the transfer of
informafionbetweentwoormoreindividuals,tmmacfionisthetmmferofvalue
betweentwoormorepersons. Bothldndsofinteractionarenecessary' (p.223).
AccordingtoKing’sfmmeworhthenursingprocessisthemethodby
whichthenurseassiststheclienttowardthemutuallydecidedupongoals. The
nurse, then, actsasafacilitatorinKing’sgoalattainmentframework. The nurse
achieveshislhergoalsutifizingthedynamicpmcessofhumaninteraction. The
perception of the nurse leads to judgmentsandtoactions or nursing interventions
bythenurse. Atthesametime,perceptionsoftheclientleadtojudgmentsand
thentoactionsbytheclient. Theprocessofhumaninteractionistherefore,a
confinuous,dymmicpmceasinaeadofseparateimidencesinwhichthescfiomof
onepersoninfluencestheperceptiomsndactionsofanother. Thenursingprocess
thatthereforemustbeutifizedmustalsobeacontinuous,dymmicpmcess,not
justthe normal cycle of assessment, planning, interventionandevaluation
(Pawcett, 1984).
Thecancerpatientandhis/hercaregiverwouldbeexperiencingmany
internalandexternaltensions. 'l‘hechalacteristicsofthecaregiver: ageand
employment status, and the process of caregiving: duration of caregiving, average
hours of daily care reported and the impact upon the caregiver’s schedule may
impact the fatigue experienced bythe caregiver. Through sharing of information
betwenthecaregiver,patientandthenurse,andpurposefidcommMcation
regmdingtherecmnmendedueatmemmmennhepotenfialmtermlandextemal
tensions, the potential for pain, fatigue, andother unpleasant side effects inthe
patient, therecommended procedurestopreventpotentialcomplications, the

20

expectafiomofbothmembersofthedyadandthenumearediscussed,andvafious
mutual strategies aredecided upon. These strategies maybe different for the
caregiverandthepatientandmayincludeattendingspecificcopinggroups, the
utilization of relaxation techniques, or the initiation of a diet and exercise
regimen. Specific strategies the nurse may suggest to alleviate caregiver fatigue
mayincludefrequentrestperiods,caregiversuppongroups,pmperdietand
adequate hydration; or may include a discussion of reducing the number of hours
of outside employment oradiscussionof howto reducetheimpactoncaregiver
schedule that the process of caregiving currently implies.

Oncethepatientandcaregiverareindependentfromthenurse,theymust
continuewiththesestrategiesunfilthegoalshavebeenmetorarenolonger
necessary,asthepatientisapproachingamoreoptimumstateofhealth. Ifthe
patiemcondifionworsem,thenursemayonceagainre-enterthesimationand
employotherstrategiesudeemednecesmrybythesiunfionfacingthedyad.
Sincemestrategiesweremmmflyagreedupon,boththecangiverandthepatiem
are much more likely to adhere to the recommended regimen, and recovery, or at
leastadecreaseinfatigueexperienced,maybeachievedatafasterrate.

To summarize, King’s theory ofopen systems and her model of human
interaction providethe framework forthisstudy. Figurelisamodification of
King’shumanintemcfiontoshowthemracfionbetweennumeandthecaregiver
andthepatient.

Inthischapter,adiscussionoftheconceptsoffatigueandcaregivingof
cancerpatientswaspresented. Theseconceptswerediscussedinrelationshipto
King’sopensystemsframeworkandhermodel of human interaction. InChapter
III, a review ofthe literature will be presented.

CHAPTERIII

InChapterIII, areviewoftheliterature fortheconceptsoffatigueand
caregivingarepresented. The research questionsposedinthisstudyareconcerned
with describing the relationship between both the characteristics of the caregiver:
age and employment status, the process of caregiving: average number of daily
hours of caregiving, duration of caregiving, impact upon caregiver’s schedule, and
the experience of fatigue reported by caregivers of cancer patients.

First, theconstnrctoffatiguewillbediscussed, thentheresearchintothe
conceptoffatiguewillbepresented. Next, literaturediscusdngtherelationship
between fatigue and caregiving will be presented, followed by a discussion of the
conceptofcaregiving. Thus, thereaderwillhaveaclearerunderstanding ofthe
concepts of fatigue, caregiving, and their relationship.

Mm

Fatigue isbelievedtobe the mostgprevalent symptom ofboth physical and
mentalillness, andisoftenthe firstindicationoftheoccurrenceofsome abnormal
process (Hargreaves, 1977; Mitchell, 1986; Morrison, 1980).

In medical terms, fatigue is not a distinct entity, but refers to 'a group of
phenomena associated with impairment or loss of efficiency or skill, and the
development of anxiety, frustration or boredom" (McFarland, 1971, p. l).
McFarland differentiated acute fatigue from chronic fatigue. According to
McFarland, the kind of fatigue caused by hard muscular work is called acute, and

21

22

results in a temporary loss of efficiency that can be relieved by rest. Chronic
fatigue, however, is not relieved by rest or sleep, and is cumumive in its effects.
This type of fatigue is mostly a psychological or psychiatric problem characterized
byboredom, lossofinitiativeandprogressive anxiety. Fatiguehasalsobeen
relatedtoselectedmoodalterationssuchasdepmsfionandanxiety, thoughany
considerationofthisrelafiomhipisbeyondthescopeofthisstudywotempaetal"
1986).

Despite the universality of fatigue in illness, the lack of clarification of the
concept of fatigue may have contributed to its elusiveness as a human
phenomenon, andtohealthcareproviders’ inabilitytooperationalizeitwithany
precision in the clinical setting. The ambiguity surrounding the concept of fatigue
iscompounded bythe large numberofdefinitions attributedtothe concept.

Industrial researchers, Yoshitake (1971) and Kashiwagi (1971) have
defined fatigue in relation to work. Yoshitake defined fatigue as “such types of
unpleasantness as aversion to work, desire for lea, impatience, and physical,
mental and neuro-sensory feelings of incongruity, or a feeling of overall
unpleasantness' (p. 175). Kashiwagi (1971) defined fatigue as “weakened
activation, weakened motivation and physical disintegration” (p. 17).

Forheslthcareproviders, fatigueneedstobeadequatelydefinedsothat
appmpdatemeasurementandmrventionscanbeinitiatedforthosepersons
presenting with this complaint. In an attempt to expand upon earlier definitions of
fatigue, health care researchers have developed differing definitions that
encompass added dimension of the fatigue concept. Vanicchio (1985), a nurse
researcher, defined fatigue as 'a subjective sense of wealiness or tiredness
resulting from exertion or stress or as a condition of impaired efficiency resulting
from prolonged mental and/or physical activity, or from an attitude of boredom or

23

from disgust from monotonous work“ (p. 122). Fatigue may be the result of an
imbalance caused by physiological, psychological or pathophysiological strain.

Another nurse researcher, Mitchell (1986), defined fatigue as an abnormal
rate of exhaustion following activity, physical, mental or emotional. Mitchell
states that chronic fatigue is most often attributed to tension, can affect few or
manybodysystems, and hasmanifestations similartothose ofsleep deprivation:
whilegeneralized fatigueisthoughttobethe resultofmidbraindysfunction.

Piper (1985), a leading nurse researcher instrumental in developing a
unifying framework for the conceptualization of fatigue, states that nursing theory
relatedtofafiguecanbegenennyacceptedureflectingthedomainofnursing:
health, the individual, nursing, and environment. Piper’s definition of fatigue is
reflectiveofeachofthesedomainsandisdefinedas 'asubjective feelingof
tirednessthatisinfluencedbycircadian rhythm. Itcanvaryinplessantness,
intensity, anddurstion. Whenacute, itservesaprotective function; whenit
becomes unusual, excessive, or constant (chronic), it no longer serves this function
and may lead to the aversion of activitywith the desire to escape" (p. 12). Piper’s
definitionwillbe utilized forthis studybecsusethisdefinition encompasses the
domain of nursing: health, the individual, nursing and the environment.

Piper’s frameworkstatesthatthereisarelatiomhipbetweenfatigueand
the four domains of nursing: health, the individual, nursing, and the environment.
She asserts that various psychological, biochemical, and psychosocial mechanisms
are likely to produce or influence fatigue symptoms in cancer patients. In the
caregiver, chronic fatigue is often attrrhuted to both physical and psychological
aspectsinherentincaring forthosefamilymemberswhoareillwithcancer.

24

W
Thereisadearthofresearchintotheconceptoffatigue, possiblybecause

oftheambiguityoftheconceptandthedifficultyhealthcareprofessionals have
had in adequately defining and measuring fatigue. The Pearson-Byers Fatigue
Feeling ChecklisthasbeenusedbyHaylockandI-Iart(l979)onapopulationof
cancer patients to measure fatigue, and Japanese researchers Kashiwagi (1971) and
Yoshile (1971) developed their own checklists fer use in measuring fatigue in
the well population. However, these instruments have no reported reliability and
validityandhavenotbeentestedinthecaregiverpopulation.

Piper et al. (1987, 1988) have done much work developing a conceptual
framework from which to studythe experience of fatigue. This proposed
framework permits multidisciplinary perspectives, and identifies strategies for
developing nursingtheoryrelatedtofatigueinthepopulationofcancerpatients.
Piper(l985) statesthatavarietyofstrategiesmaybeutilizedtodevelop nursing
theory regarding the concept of fatigue. For the development of Piper’s
conceptual framework of fatigue in cancer patients, a deductive approach based on
aliterature reviewfrom fivedisciplinesmostactiveinresearchl’ngtheconceptof
fatigue (nursing, medicine, psychology, physiology and ergonomics) was used.

In Piper’s framework (1989), both the subjective (perceptual) and the
objective (behavioral, biochemical and physiological) indicators of fatigue are
discussed (AppendixA). Piperassertsthatbecause mostofthe research in fatigue
has used healthy populations, findings from these studies may not be applicable to
cancer patients.

The remainder of the fatigue framework discusses fatigue mechanisms.
Thoughtheexactmechanismsthatcause fatigueareunknown, thepatternsmost
often reportedtoinfluence fatigue inboth healthyand illpopulationsar'e:

25

activity/rest patterns, sleep/wake patterns, disease patterns, treatment patterns,
environmental patterns, symptom patterns, psychological patterns, changes in
regulation/transmissionpatterns, socialpatterns, lifeeventpatterns, innatehost
factors, accumulationofmetabolites, andchangesinenergyandenergysubstrate
patterns.

Piper (1988) asserts that each one of these mechanisms that influence
fatigueinboththewellandillpopulationneedstobeinvestigatedmore
thoroughlyinorder forthe healthcsreprovidertobettercare forthe individual
withcancer, andgivethenecessaryemotionalandphysical supporttothe
caregiver.

Piper, Lindsey and Dodd (1984) developed a visual analogue fatigue scale
by which to measure subjective dimensions of fatigue. Piper (1988) tested the _
fatigue scaleonSOnewlydiagnosedbreastandlungcancerpatientsand reported
that the fatigue scale effectively measured the temporal, affective,
intensity/severity and sensory dimensions of fatigue. The reliability of the scale,
testedusing Cronbach’sAlphaasameasureofinternalconsistency, was reported
to be .82. No figures were reported for the validity of this instrument.

Thoughtherearenostudiesfocusingonfatigueinthecaregiver
population, two other nurse researchers, Haylock and Hart (1979) and Rhoten
(1982) conducted research focusing on the symptomatology and manifestations of
fatigue in the ill population.

Haylock and Hart (1979), focusing upon the symptomatology of fatigue,
studied fatigue levels and fatigue symptoms of thirty cancer patients undergoing
radiationtherapybyutilizingthePearsonByersFatigue Feeling Checklist. This
checklist defined the fatigue feeling continuum in ten short easily understood
phrases: extremely peppy, very lively, very refreshed, quite refreshed, somewhat

26

refreshed, slightly pooped, fairly well pooped, petered out, extremely tired, and
readytodrop. Thesetworesesrchersfoundthatinthispopulationofcancer
patients, the fatigue symptoms which had statistically significant relationships
with fatigue levels lends further support to the notion of a physical, rather than
psychological etiology of this phenomenon. A limitation of this study is a rather
small sample of thirty.

Rhoten (1982) conducted a study investigating the relationship between
subjective and objective fatigue levels in the post-surgical patient, using a
convenience sample of five patients, twenty-five years or older, who were
admittedtothehospital forabdominal surgery. Rhotenfoundthatfatiguewasnot
aprimaryconcernforpost-surgicalpatients, thattheirmainconcernwaspain, the
discomforts of intravenous catheters, and nasogastric tubes. Major limitations to
Rhoten’s study are her extremely small sample size, the fact that no reliability or
validitywas reported forherinstruments, andthe factthatshedidn’t specifically
state which methods she used for her qualitative data analysis, severely limiting
the generalizabilityofthis studytoalargerpopulation.

Insummary, research intotheconceptoffatigue, isstillinthepreliminary
stage. Piper is currently developing a nursing framework from which to
operationalize her definition of fatigue. Though the applicability of this
framework is being investigated using the Piper Fatigue Self-Report Scale on a
population of cancer patients, the health care professional eventually may be able
to expand the framework to include those caregivers of cancer patients and other
well individuals who are experiencing fatigue.

Other researchers, such as Haylock and Hart (1979) and Rhoten (1982),
have also investigated fatigue in ill individuals and found that fatigue appears to
have a physical rather than psychological etiology. The applicability of these

27

findingstothecaregiverofthecancerpatientisnotknown, however,because
fatigue inthe ill individual may manifest itself differentlythan fatigue in the well
individual. Becauseofanobviouslackofadequateresearchintotheconceptof
fatigue, more investigation is necessarybefore health care providers can
adequately providecare forpersonswiththiscomplaint.

W

The following studies discuss the relationship between caregiving and
fatigue. The caregiving concerns expressed by these studies show how the
demandsofcaregivingcanleadtoincreasedfatigueinthecaregiver. Thereareno
studiesthatexaminethe relatiomhipbetweenfatigueandcaregivinginthe
caregiver of the cancer patient.

Goldstein, Regnery and Wellin (1981) reported on the relationship between
caregivingand fatigueinapopulationoflongtermpatients. Interviewsand
observatiominthehomesofsrandomizedsampleof6olongtermpatientsofnon
specified disease processes, supplemented by visits to about 30 others, confirmed
that for the majority of caregivers, the most difficult problem is fatigue. They
concluded that the time, place, energy demands and expectations of caregiving and
thoseofothermlesthecaregivermayhavearesometimesnoteasflyreconcfled
witheachother, causingincressingconflictandtensioninthecaregiver, and
eventually increasing fatigue levels. This fatigue is due, in part to the increasing
demands of caregiving, and, in part, to the difficulty the individual may have
resolving the conflicting roles that now exist for the caregiver.

Stetz (1987) conducted a descriptive study to explore the demands put on
spousecaregiversoftheterminallyilladultcancerpatient(N=65). Aonetime,
semi-structured at home interview was conducted. These interviews revealed nine

28

major categories of caregiving demands. The demand reported most frequently
msmamgingphysicalcam,inc1udmgtreatmemregimen,andimposedchangesm
lifestyle (69% of sample). The nexttwomostfrequently reported caregiving
demandcategories (39%)weremanagingthehouseholdandfinances, andstanding
byincasethepatientneededassistance. Theothersixcategoriesincluded
alteratiominspouseandcaregivem’mu-beingandpattemoffivingmonstam
vigilance, unmetexpectations fromthehealthcaresystem, the cancer itself,
anticipating the future, and alterations in relationship with spouse. These
categories make up the four dimensions of caregiving.
ResearchfindingsbyOberstandJames(l985)and0berstandScott(l988)
ontheadjustmemofthecoupleaftercancermrgernggestthat,thoughthe
Mensityofdistrenexpefiencedbypafiemsandspouseswassimihr,concermof
spouseschangeovertime. Spousalconcernsrelatedtothephysicalhealthoftheill
familymemberwerereplacedbyworriesovertheirownhwththirtydaysafter
thespousewasdischargedfromthehospital. Fromthisstudy,onemightargue
thatcaregiversofcancerpatientsexperiencemniesaboutboththefamfly
members’ healthaswellastheirownhealth,perhapsincreasingtheseverityof
fatigueexperienced.
Hinds(1985),studied83familieswhocareforpatientswithcancerat
hometodeterminetheresourcesufilizedandtouss-howfamiliescopedwith
caregiving,andmettheneedsexpressedbythepatients. Hindsfoundthat27$of
thefamfliessaidthattheyneededguidamemasdstthemwithphysicalcare, 13%
ofthefamifiesmpoflequuifingfimncialassistance,and53%idenfifiedseveral
areas which indicated their caregiving role was overwhelmed with psychological
strains which were difficult, if not impossible to resolve. Hinds found that
families seldom sought assistance for social or emotional needs. Although 23% of

29

the families knew about the community services available, only 8% used them.
The other major concern expressed by the family caregivers was the difficulty in
obtaining information; in particular, the difficulty obtaining concrete answers
from physicians, getting information by telephone, or finding out about daily
progressorsetbacksfromthenurses. Evidentfromthisstudyisthepotentialfor
increasingcaregiverfatigue, becauseoftheincreasedstraininherentinthe
caregiving role.

Insummary, becauseofthescarcityofadequateresearchintothe
caregiving role, and specifically into the relationship between fatigue and
caregiving in the population caring for cancer patients, further research
clarification and elaboration of adaptation to the role of caregiver during various
stagesofaterminalillnesssuchascancerisneeded.

Goldstein, Regnery and Wellin (1981) found that a relationship existed
betweencsregivemoflongtermpatiemsandfatiguetotheincreasedenergy
demandsofcamgivingandmedifficNtyofreconcihngotherpmviouslyexisfing
roles to the caregiver role. Stetz (1987) researched caregiver demands and found
that 69% of the caregivers reported providing physical care, though in this study
thesedemandswerenotdirectlyrelatedtofatigueinthecalegiver. Oberstand
James (1985) and Oberst and Scott (1988) researched the emotional and physical
adjushnemofthepafiemNcaregiverreturmnghomeaftercancersurgeryand
found that caregiver concerns change over time, with an increase in concern for
the caregiver’s own physical and emotional well-being replacing the original
concern for the patient. Hinds (1985) found that 27% of cancer caregiver families
(N s 83) needed help with physical care, and 53% ofthese families needed
assistance with psychosocial or emotional concerns related to caregiving.

3O

Thoughthemajorityofthesestudiesdonotreportadirect relationship
betweencaregivingconcernsandfatigue, thisauthorcontendsthattheseconcerns
doindeedleadtoincreasedfatigue inthecaregiverofthecancerpatient. The role
conflict often inherent in the caregiving role leads to distress, which over a long
period of time, may lead to increased fatigue levels in the caregiver. More
research is needed to establish this relationship more clearly, enabling the health
care professional to better plan appropriate interventions to assist the caregiver.

9mm

Theconceptoffamilycaregivingis receiving increasingamounts of
attention from researchers as well as health care providers (Bowers, 1987; Hinds,
1985). Throughout history, caregiving has been a function of the family. Then,
as now, how well families were able to cope with the added responsibilities of
caregivingdependedupontheresourcesandcopingskillsofthevarious family
members (Hinds, 1985). Though caregiving might be difficult, it was and is,
considered a family responsibility and may be done out of love and commitment.
Stetz (1987) defined caregiving as " providing physical, emotional, psychological
and spiritual assistance and support for the ill individual in the home setting" (p.
260). Because Stetz’s definition most holistically descrrhes the caregiving role, it
willbeusedinthisthesis, thoughthespiritualdimensionofcaregivingwillnotbe
discussed.

The characteristics of the caregiver may impact the actual caregiving and
eventually may result in an increase in fatigue experienced (Goldstein et al.,
1981). Thecharacteristiesofthecaregivertobeconsideredinthisthesisareage
and employment status of the caregiver. Goldstein, Regnery and Wellin (1981)
state “the better the caretaker’s health, and the more available the assistance of

31

others, the less arduous is the caretaker’s role, as well as the less disruptive of his
or her other roles and involvements' (p. 26). Conversely, the more physically
taxingthecalegiving role is, thegreateristhelikelihoodthatvirtuallyallother
rolesandactivitieswillbesacrificedtothedemandsofcaregiving. The
researchersassertthat ifacaregiverhasmultipleotherobligations such as
occupational, thecaregivingdemandsandexpectationsofthe role maynotbe
easily reconciled with each other and caregiver fatigue is the result.

Thoughnoliteraturewasfounddiscussingtherelationshipbetweenageof
thecaregiverandcaregiverfatigue, itislogicaltoassumethatasthecaregiver
grows older, and physical health declines, the fatigue experienced increases. The
characteristics of the caregiver, age and employment status, are very important for
thehealthcareprovidertocomiderwhendeterminingwhich interventiomto
employ to best support the caregiver.

Theprocessofcaregivingisalsoimportanttoconsiderwhenattemptingto
determinetheappropriateinterventionstoaneviatecaregiverfatigue. Durationof
the caregiving experience, the number of hours of daily caregiving reported, and
theimpactofcaregivinguponthecaregiver’sschedtdeareanaspectsofthe
process of caregiving to be considered.

Bowers(l987), inadiscussionofthecaregivingprocess, outlinedfive
conceptually distinct, overlapping categories of intergenerational caregiving. Only
one of these categories includes what is generally considered to be caregiving, the
hands on caregiving behaviors. The remaining categories include anticipatory,
preventive, supervisory, and protective care. Although all of these categories may
not be applicable to the population of caregivers of individuals with cancer,
nevertheless, in each category are components of care that caregivers of this

32

population must remit in order to grapple with caregiving demands, possibly
causingaresultantincreaseinfuigue.
Twocomponemsoftheprowssofcaregivingtobeconsideredinthisthesis
are number of hours of care and duration of caregiving. To more thoroughly
understandtherelationshipbetweenthesetwocomponentsofthepmcessof
camgivingmdtheconceptoffafigueasitmlatestoworkdone,aninvesfigafion
intothehistoryofresearchofthefatigueisnecmary.
IntheperiodsunotmdingWorldWarI,extensiveresearchwascarriedout
inEnglandtomeasureproductivityinthemunitions industry (Cameron, 1973).
Theresearchersconcludedthattheoutputoftheworkerwaslimitedinsome
mannerbyfatigue,andthatbytheafleviafionoffafigue,pmductioncouldbe
maintained at a higherlevel. This work, though primitive by today’s standards,
laidthegloundmrkforthemoresophisticatedresearchthatwastofonowin
fatigue.
ThesecondmajorwaveofinterestinfatigueoccurredduringthelMOsand
1950s, withthefocus of interestonmilitaryaviation. Theworkof Bartlett (1943)
clearly established the pattern of breakdown in skilled performance which occurs
infafigue,andalsoundermeinfluemeofothertypesofstressfulcondifions. The
occurrence ofthis fatigue, alsoknownasbattle fatigue, demonstratedthatpilots
canonlyworkafimitednumberofhoumandaherthatfimithasbeenreached,the
pilots’ judgment, capabilities, andthespeedwithwhichtheymadethe judgments
becameimpaired. Thefindingsofthiswar-timeresearchwasextendedtothe
commercialairlinesin 1946, immediatelyaftertheendofWorldWarlI,andare
stillineffecttoday.
Twomorerecentmajorresearchersintheareaofindustrialfatigueare
Kashiwagi (1971) and Yoshitake (1971). Kashiwagi (1971) developed a thirty

33

item fatigue rating scale given to engine drivers of the Japanese National Railway
(N = 65) to enable the researcher tojudge human fatigue through a person’s
appearance. This fatigue scale wu purported to have three dimensions: weakened
activation, weakened motivation and physical disintegration. These dimensions
werefoundtobecommontoalmostallkindsofworkmashiwagi, 1971).

Yoshitake (1971) studied the association between the frequency of
symptomsoffatigueandthefeeling offatigueonbankpersonnelinTokyo(N=
387) byutilizinga20itemchecklisttomessurethreedimensiomoffatigue:
General Feeling of Incongruity in the Body, Mental Symptoms, and Specific
FeelingsofIncongruityintheBody. Yoshitake foundthatthecorrelationbetween
the frequency of symptoms (average of each dimension), and the feeling of fatigue
was extremely high. He hypothesized that the results indicate the more numerous
the symptoms, the greaterthe feeling offatigue, becausethenumberof
complaintsofsymptomsareconsideredtobethemostdominantfactor for
expressing the feeling of fatigue.

Because both Kashiwagi (1971) and Yoshitake (1971) developed and tested
theirinstrmnentsonapopulation ofhealthyJapanese workers, the question must
be raisedabouthowtransferablethe resultsofthis research istotheAmerican
cancercaregiverpopulation. Thereliabilityandvalidityoftheseinstrumentsare
not reported. Also, there are cultural differences between-Americans and Japanese
which may influence the validity of these instruments. Therefore, though both
instrumentsmaybeappropriateformeasuring fatigueintheAmericancancer
caregiverpopulation, nostudyhasreportedtheuseofeitherinstrumentinthis
population.

To summarize, fatigue in the workplace has been examined by the
Industrial Health Research Board (1914) in England, by Bartlett (1943), and more

34

recently by Japanese researchers, Kashiwagi (1971) and Yoshitake (1971). From
pastresearch, weknowthatbydecreasing fatigue, aresultantincreasein
productivity is expected (Cameron, 1973). Bartlett (1943) found that as the
numberofhoursofworkincreased, aresultantdecreaseinpilot’sjudgmentwas
noted. Yoshitake (1971) noted that the more symptoms of fatigue that were
reported, the greater the feeling of fatigue.

Therefore, based on the work of Bartlett, Kashiwagi and Yoshitake, an
assertion can be made that as caregivers care for their family members over time,
andasthenumberofhoursofdailycaregiving increase, anincreaseinthe fatigue
experienced by this population would be reported. Caregiving is work, and work,
accordingtotheindustrial researchers, leadstofatigue. These studiesalsopoint
oathatotherdimensiomofcamgivingbeddesthephysicaldimemionleadsm.
fatigue (Kashiwagi, 1971; Yoshitake, 1971) but that these dimensions are difficult
to isolate and adequately measure.

Muchstillneedstobelearnedaboutcaregivingingeneral, andabout
caregiving in the cancer patient specifically. The process of caregiving
encompasses different aspects to each individual caregiver. While the physical act
of caregiving and the number of hours of caregiving may induce fatigue, most
family caregivers experience sometimes overwhelming psychosocial and financial
concerns, as well as major role alterations, including impact upon schedule.
Caregiving for a family member may last days to months, or even years, thereby
prolonging thestrainand fatigueaswellastheuncertaintyaccompanyingthe
diseaseprocessforboththepatientandthecaregiver. Thefindingsofthevarious
studies of caregiving indicate that the health care professional must learn better
waystocommunicatetothepatientandcaregiver, andtosupportthedyadby
providing both physical, spiritual, emotional, and psychosocial assistance to the

35

family. If this can be accomplished, then fatigue in both the patient and caregiver
couldbedecreased, andamorepositive caregiving experiencewouldbethe result
of the health provider’s actions.

5mm

Fatigueandcalegivinghavebeencomideredinthischapter. Fatigueisan
ambiguous concept, difficult forthehealthcareprovidertounderstand, defineand
measuremthegenemlpopulmimandspecificanyinthepopulafionofcaregivem.
Piper’s imtrument for measuring fatigue is relevantbecause it isa reliable measure
offatigue,whichhasbeentestedinapopulationofcancerpatients.

Caregiving, on the otherhand, is aconcrete role, though it has different
MonumenfionedbyStetz. Onlyrecentlyhasthisconceptreceived
increasedattentionandresesrch. Thecsuseandeffectoffatigueuponthe
csregivermustbeunderstoodinorderfortheheslthcareprovidertomore
effectivelysupportboththepatientandthecaregiver. Byincreasingour
understandingofthevariouscausesof fatigue, andits effects uponthecaregiver
ofthecancerpatient,healthcareprofessionalsmaybeabletoincreasethequality
ofcarembothcamerpafienmmmeircaregivemfincreasethehealthandwen-
being ofthe caregiver, more adequatelymeetthe patient and the caregiver’s
needs, decreaseinstitutionalization ofthepstient, anddecrease possible abuse,
bothphysicalandsubstanceinboththepatientandthecaregiver.

Chaptermhaspresentedareviewoftheconceptsoffatigueand
caregiving. ChapterIVwillpresentthemethodologyandproceduresutilizedin
thisresearchstudy.

CHAPTERIV

In Chapter IV, the methodology and procedures utilized in this research
study are presented. The sample, settings, data collection procedure with human
rights protection, the instruments, scoring techniques and procedures for data
analysisarediscussed. Thepurposeofthestudyistoexamineanddescribethe
experience of fatigue in the caregiver of the cancer patient in relation to caregiver
age and employment status, and to the number of hours of caregiving reported, the
duration of caregiving and to the impact upon the caregiver’s schedule. The
research hypothesesarepresentedasanintroductiontoadiscussionofthe
methodology.

Hypothesis 1: Older caregivers experience more fatigue than younger
caregivers.

Hypothesis 2: Caregivers who are employed outside the home experience
more fatigue than those caregivers not employed outside the home.

Hypothesis 3: The greaterthe number of hours of daily caregiving
reported, the greater the fatigue experienced by the caregiver.

Hypothesis 4: The longer the duration of caregiving, the greater the
fatigue experienced.

Hypothesis 5: There is a relationship between the fatigue experienced by
the caregiver and the impact upon schedule reported.

This study utilized data gathered from the larger, one year longitudinal
study entitled The Family Homecare Center Study funded by the National Center

36

37

for Nursing Research #1 R01 NR1915, B. A. Given, principal investigator. The
purpose of the Family Homecare Cancer Study, was to follow solid tumor cancer
patientsandtheirfamilycaregivers inordertodescribe the needs for, the receipt
of, andtheoutcomesofcareprovidedbyfamiliesandotherhomecareand
community agencies located in community based settings.

Theresearchattemptstomeasurepatients’ needforcareasevidencedby
their symptoms, fatigue, physical and mental health, and functional health status,
and to measure caregivers’ responses to those needs through caregiver level of
involvement in that care, their perceived burden associated with providing care,
andtheirmental healthstatusand utilizationofservicesaspartoftheirown health
care needs (Given, 1987).

The population of caregivers of cancer patients was drawn from those
personsbeingtreatedinbothsmallandlargecommunitbemedicalcare
settings in Michigan, affilimed with the Michigan State University College of
HumanMedicine. Thenursingstaffateachsitewasinstructedinthenecessary
procedures to follow to identify potential participants, and to explain the study to
those potential participants. The study was explained to the patient and caregiver,
with instructions giventcthecaregivertomailbackthecardtoMichigan State
University or call the nursing research office if interested in participating in the
study. Those that mailed back the cards or contacted the researchers by telephone
werecontactedbyhealthcare researchersandaflted appropriate screening
questions to determine if the potential participants met the selection criteria.
Thosepatientsandcaregiverswhometcfiteriawereassigmdtodataconectom
who had been oriented to correct interviewing techniques. Questionnaires were
administered in telephone interviews by health care researchers to those caregivers
who met eligibility requirements and had been entered into the study. Self -

 

38

administered booklets, along with consent forms, were then sent to those

caregivers who had completed the Wave 1 telephone interviews, to finish and mail
back in the self -addressed stamped envelope provided to the participants. After
meinmkemrview,thecaregivemwerecontactedatthreemonthintewalsfor

follow- up questionnaires for a period of one year.

finals

The study participants consisted of a sample of 248 caregivers drawn from

the larger population of 303 caregivers of cancer patients completing Wave 1 of
the Family Homecare Cancer Study.

The following were the criteria for selection of caregivers for this study:

1)

2)

3)

4)

5)

Subjects were selected from a population of caregivers of non-
institutionalizedpatientsdiagnosedwithcancerand living withinthe
state of Michigan.

Participantsmustbecaring forapersondiagnosedwith solidtumor
cancer or lymphoma.

Participants must be caring for a person currently undergoing
treatment for new or recurrent disease, experiencing symptoms or a
decreasing level of activities of daily living.
Participantsmustbecaring forpersonsbetween20t070yearsof
age.

Boththecaregiverandthepatientconsentedtobeinginthe study.
Participants must answer at least 10 out of 17 questions on the Piper
Fatigue Self-Report Scale.

39

Because the sample was self- selected and not the result of random
selection, the resultsofthisstudyshouldnotbeconsideredtoberepresentativeof
all caregivers of cancer patients.

W
The data for this thesis were taken from selected questions from Wave 1 of

the caregiver’s telephone interview and self -administered booklet, and thus only
cross-sectional relationships among the variables will be considered.

Each data collector contacted his/her assigned caregiver at Wave 1 to
administer a telephone questionnaire to gather sociodemographic information such
as age, employment status, duration of caregiving and the number of hours of
daily caregiving. After this information was gathered, the data collector mailed
the caregiver the self- administered booklet which included among other measures
the adapted Piper Fatigue Self-Report Scale and the Impact On Schedule Scale.
The caregiver was instructed to fill out this self-administered booklet completely
and mail it back to Michigan State University. Ifthe self-administered booklet
wasnotreturnedinthreeweeks, atelephonecallwasmadetothecaregiverto
remindhim/herandtoamweranyquestionsthatthecaregivermayhave regarding
the questionnaire. Results from both the telephone interview and the self- 7
administered booklet were then compiled and entered into the computer for

 

In order to describe caregiver perceptions of fatigue, a shortened
adaptation (19 items) of Piper’s Fatigue Self-Report Scale was used (Appendix B).
The first seventeen items from this form directly measure the total experience of

 

4O

fatigue and were utilized for this research (Appendix C). Categories of responses
foreach questionof the PiperSelf-Report Fatigue ScalearelistedinAppendix C.

Caregiver’sresponsestotheexperienceoffatiguewereassessedonan
analoguescalebythecaregiverplacingan'x'onaline2lcentimeterslong
indicatingthecurrentamountoffatigueexperienced. Datacollectorsthen
measuredthefinefmmthebeginningofthefinetowherethe'x'crossesthefine,
andrecordedthisnumberincentimeters.

Itemslthrough 12directlymeasureintensityorseverityoffatigue,and
wereconsideredasasubscaleofthetotalfatiguescale. Items13through17
measureWaysToCombatFatigueandwereconsideredasasubscaleofthetotal
fatiguescale.

We

The ImpactOn Schedule Subscale (Given, l987)wasutilizedto gauge the
impact ofcaregivingonthecalegiver’s schedule. Theresponsestoeachitemare
recordedonafivepoimljkertscalemngingfmmstronglyagreeahostlongly
dimsree(l)(AppendixD).

W
To evaluate the process of caregiving components of number of hours of

daily caregiving and duration ofthe caregiving experience, questions 31 and 33 in
the Involvement Section of Wave 1, telephone interview, of the study were
utilized. Question 31 asks “How many hours/day do you provide direct care for
your relative?’ Question 33 asks “How long have you been providing care for
your relative?‘ Answers for daily caregiving range from 0 - 24 hours, while
answers for duration of caregiving was measured in months.

41

W
To evaluate the characteristics of the caregiver, age and employment status

ofthe caregiver, question 5 on the screening form asks: I'What is your birthday?“,
and question one in the Employment section asks 'Are you currently employed for
payoutside the home?'. Age ofthe caregiverwas measured inyears.
Employment status was measured by caregiver responses of employed or not
employed.

W
Thereweretwoinstrumentsusedinthisstudytomeasurethevariables.

Fatigue inthe caregiverofthecancerpatientwasmeasured bythe Piper Fatigue
Self-Report Scale. This instrument, shortened for the Family Homecare Cancer
Study, isa 19itemvisualanaloguesca1e(AppendixC),takenfromtheoriginal'
Piper Self-Report Fatigue Scale (Appendix E), developed by Piper, Lindsey and
Dodd (1984). The visual analogue scale is, according to Gift (1989), a horizontal
orvertical line usually 100millimetersin1ength, with orwithoutgradations,
utilizedhytheparticipanttomeasureintensityofaparticularconcept. The
shortened, adapted form, utilized for this thesis measures only the total fatigue
score, and does not measure any of the fatigue dimemions separately. Seventeen
ofthenineteenitemsontheadaptedfatiguescalewillbeutilized forthisanalysis
(Appendix C). There is no reported validity, either construct or content for the
shortened form of the fatigue scale. The Clonbach’s alpha coefficient for the
total fatigue scale (items 1-17) forthis study is .89.

To measure impact upon the caregiver’s schedule, a subscale of the
Caregiver Reaction Scale was utilized (Appendix D). This subscale measures the
effect caregiving has upon the caregiver’s schedule. The internal consistency for

42

the Impact On Schedule subscale reported as a Cronbach’s alpha of .84 (Given,
1987).

592m .

The scoring for the fatigue scale and impact upon schedule subscale is as
follows. Responses to each question on the Piper Fatigue Self- Report Scale were
measuredincentimeters fromthebeginningofthelinetowherethecaregiver
markedan 'x' ontheline. Thisdistance, fromOtoZl centimeters, wasgivena
numerical score for each of the seventeen items measuring the total fatigue
experience of the caregiver. These scores were then summed and averaged, giving
a total fatigue score, or scale score, for each caregiver. Scale scores could range
from Oto 21, with 21 representing extreme fatigue.

TotalscoresfortheImpactOnSchedule subscale range from 1 toS. The
responsestoeachitemwererecordedonafivepointIkertscale, ranging from
mslyasmefimmslydisasreeu). Themsherthescote. themoreimpact
on the caregiver’s schedule caregiving activities exhibit.

MW
' Although no pilot studywas conducted, various members of the research
teamfortheCancerFamilyHomecareStudycritiquedtheinstrumentsand
assessedtheclarityofinstructionsandquestions. ThePiperFatigue Scalehasbeen
piloted in other Piper studies. The Cancer Family Homecare Study was conducted
utilizing the format presented in this chapter.

Wallets
Sociodemographic/economic data and information regarding age, level of
education, employment status, income and other background information of the

43

cancer caregiver were amlyzed using descriptive statistics. These variables are
described in detail in Chapter V.

The Pearson Product Moment Correltdion Coefficients were calculated to
test each hypothesis. The score of each of the characteristics of the caregiver
considered (age and employment status) was correlated separately to the mean of
the total fatigue score. The scale score for the Impact On Schedule Scale was
correlatedusing PearsonCorrelationanalysistothemeanofthetotal fatigue score
toobtainthe relationshipbetweentheprocessofcaregivingandthe fatigue
experienced by the caregiver of the cancer patient. The frequencies, mean and
percentages, along with the tables summarizing the frequencies of
sociodemographic categories, fatigue and impact upon schedule scores as well as
other related factorsarepresented in ChapterV.

Wis

Specificprocedureswerefollowedtoassurethattherightsofthe study
participants were not violated. Approval of the human rights protection
procedures was granted by the Michigan State University Human Subjects Review
Committee December 5, 1989 (Appendix F). Consent for the longitudinal study
wasobtainedbythe FamilyHomecare CancerStudyresearchers from each
physician involved before approaching oncology patients and their caregivers
regarding participation in the study. An explanation of the research study and
goals, the approximate time the caregiver and cancer patient would be involved in
participation, the nature of the questions to be asked, and assurances of anonymity
were provided each participant as part of the letter of explanation. Signed consent
forms were required from both patient and caregiver. Number-coded
questionnaires were separated from patient and caregiver identifying the date they

44

were received by the researchers. All the data were transcribed in aggregate form

for computer analysis.

Man
A discussion ofthe methodology utilized in this studywas presented, along
with a detailed discussion of the sample, instruments used, human rights
protection, procedures, and statistical analysis strategy. In Chapter V, the data
whichdescribesthestudysampleandaddressesthe research hypothesesare
presented.

CHAPTERV

mm

mm
Thepurpose ofthisstudyistoexamineanddescribetheexperienceof

fatigue inthecaregiverofthecancerpatientin relationtothecharacteristicsof
the caregiver (caregiver age and employment status), and to the processes of
caregiving (number of hours of daily caregiving reported, the duration of
caregiving, and the impact of caregiving on the caregiver’s schedule).

In this chapter, data which describes the study sample and addresses the
research hypotheses are presented. The study sample is described by age, sex,
education, employment status and income. Additional descriptive data including
the study variables of number of hours of daily caregiving reported, duration of
caregiving, and impact on the caregiver’s schedule are also presented.

Several statistical analysis techniques were used to analyze the data.
Descriptive statistics include frequencies, percentages, means, standard deviations,
and ranges. The inferential technique used was the Pearson Product-Moment
Correlations! analysis to determine the existence of a relationship between fatigue
and characteristics of the caregiver and processes of caregiving in the caregiver of
the cancer patient. The data are presented as follows: descriptive data pertaining
to the sample, descriptive data related to fatigue, reliability data, and descriptive
andinferentialdatapertainingtotheresearchhypotheses.

45

46

W
mamas
The sample consisted of 248 caregivers of cancer patients participating in
the larger longitudinal Family Homecare Cancer Study (Grant #ROl NR1915).
The study sample was derived from those caregivers completing Wave 1 of the
study, which included a self -administered questionnaire and a telephone interview.

W

Thesociodemographic descriptorsused inthepresentstudywereage, sex,
education, employment status and income. The age of the caregivers ranged from
20t081 yearswithameanageof54.8yearsandastandarddeviationof 12.6

 

 

years (see Table 1).
Table 1
D . i1 . E E . !

Age N Percentage
20-35 21 _ 8.5
36-50 67 27.0
51-60 73 29.3
61 -70 65 26.2
71 ~81 22 9.0

TOTAL 248 100.0

 

47

Theagesofthepatientsrangedfrom l8to83 years, withameanof59.l
yearsandastandarddeviationof 12.3 years. Seventypercent(N= 174) ofthe
cancerpatientswereoverSOyearsofage.

Thirtyfivepercent(N-85)ofthecaregiversweremale, while65percent
(N a 163) of the caregivers were female.

Fifty percent ofthe caregivers (N. =- 124) reported working either full time
orparttime, while fiftypercentofthecaregivers(N= 124) reportedbeing
unemployed or retired. _

The educational level of the caregivers was distributed over six categories,
from a grade school or less education to a graduate level in college or professional
degree. Eighty-nine percent (N a 219) reported graduating from high school or
higher education (see Table 2).

 

 

Table 2

D . ’b . E ; ’ve E ! .

Education N Percentage
Grade school or less 6 2.4
Some high school 23 9.3
High school graduate 91 36.7
Some college 81 32.7
College graduate 24 9.7
Grad/prof degree 23 9.3
TOTAL 248 100.0

 

48

Annual non adjusted household income ranged from less than $5,000 a year
to more than $50,000 per year with a mean of $29,350 (see Table 3).

 

 

Table 3

D . i! . [H l I ll

Income (in thousands) N Percentage
$ 1,000 - $ 9,999 12 6.3
$10,000 - $24,999 67 34.8
$25,000 - $39,999 48 25.0
$40,000 - $49,999 22 11.5
$50,000 plus 43 22.4
TOTAL 192 100.0
Misdng‘ 53

 

I'Misaing data may be explained by 535 caregivers who chose not to disclose their
household income to the research staff as this was an optional question.

The duration of caregiving in months ranged from one month to 218
months, withameanof23.6monthsandamedianofninemonths (see Table 4).

The hours of care that caregivers reported giving daily range from zero to
24 hours, with a mean of 4.3 hours (see Table 5).

a at a e - e e
TherangeofthemeansofthetotalfatiguescorewasfromOto18.4witha
mean of 8.2 and a standard deviation of 4.2. See Table 6 for frequency
distribution of the total fatigue scale.

49

 

 

 

Duration (in months) N Percentage
1 - 6 102 41.5
7 - 12 48 19.5
13 - 24 34 13.8
25 - 48 37 15.0
49 - 218 25 10.2
TOTAL 246 ' 100.0
Missing’ 2

 

*Missing data may be explained by 2 caregivers who were unable to state how long
a duration in months they had been caregiving.

50

 

 

Table 5

11' fl . [11 not]; '1 E

Hours of Care N Percentage

< 1 46 19.2
1 - 3 106 44.2
4 - 10 60 25.0
11 - 24 28 11.6

TOTAL 240 100.0

Missing‘ 8

 

I"Missing data may be explained by eight caregivers that were unable to stage how
many hours of daily care they gave to the cancer patient. Possibly, because of
the cyclical caregiving necessary for the cancer patient related to treatment
methods, if the study had asked how many hours of weekly or monthly
caregiving the caregiver had done, then the results might have been different.

51

 

 

Table 6
of ati e o 'v
Mean Score Items 1-17 Items 1-12 Items 13-17
< 1 6 6 7
1.00 - 7.00 95 111 69
7.01 - 11.00 80 .63 66
11.01 - 21.00 67 68 106

TOTAL 248 248 248

 

52

The range of the severity subscale (items 1-12) was from zero to 19.1,
with a mean of 8.0. The range ofthe WTCF subscale (items 13-17) was zero to
21, with a mean of 9.6.

The total fatigue score wascomputed fromthe mean ofitems 1-17 onthe
Piper Fatigue Self-Report Scale (see Appendix C). Table 7 shows the mean, and
standard deviation, and the total item correlation for each item in the
questionnaire. The range for all questions was from 0-21.

NW
The reliability of the instruments was measured by computing coefficient

alpha, which isanindicationofhomogeneityorinternal consistencyand estimates
the extent to which different subparts of an instrument are equivalent in terms of
measuring critical attributes (Polit & Hunglar, 1987). The coefficient alpha of the
shortened 17 item Piper Fatigue Self-Report Scale was found to be .89, indicating
a good reliability. The alpha coefficient of the severity subscale (items 1- 12) is
.89. The alpha coefficient of the ’Ways to Combat Fatigue (WTCF)’ subscale
(items 13-17) is .86. The internal consistency reported for the 'impact on
schedule’ subscale is a Cronbach’s alpha coefficient of .84 (Given, 1987).

 

Inthissection, descriptiveandinferential statisticsarepresentedasrelated
tothe individual researchhypotheses. Thedatawill firstbeanalyzed using the
total fatigue score (items 1-17), thenusingthe severity subscale (items 1-12), and
finally using the WFCF subscale (items 13-17).

W: Older caregivers experience more fatigue than
‘ younger caregivers.

53

 

 

 

\ONQGUI-hqu-s

t—sv-st-Is-tt-tr—Ht—
QGM¥UNHO

10.0
9.0
11.2
7.2
9.4
7.0
7.7
6.1
10.3
8.6
6.3
4.3
8.3
10.1
11.8
9.9
10.1

6.6
6.6
7.9
6.7
6.2
6.2
6.8
5.7
7.0
6.7
6.7
5.5
6.0
6.6
6.8
6.2
7.0

.75
.76
.62
.59
.54
.73
.74
.76
.58
.52
.39
.30
.68
.81
.71
.55
.67

 

54

See Table 8 for a comparison of statistical findings for each scale utilized.
The analysis forthishypothesis utilizingthetotal fatigue scorewasbased onthe
Pearson Product Moment Correlation. The correlation coefficient was - .03,
indicating a slightly negative correlation existing between caregiver age and the
fatigue experienced. However, the p a .30, indicates this finding is not significant
at the p<.05 level of significance therefore, this hypothesis is rejected using the
total fatigue scale.

Analyzing this hypothesis utilizing the severity subscale only, the
correlation coefficient is .01 (p =- .43). This finding is not significant at the
accepted level of significance (p<.05), therefore the hypothesis is rejected.
Analyzing hypothesis #1 utilizing the WTCF subscale, the Pearson r is -.13 with a
(p =- .02), which indicates that this finding is statistically significant at the p<.05
level, therefore, the hypothesis is supported when utilizing this scale.

W2: Caregivers who are employed outside the home
experience more fatigue than those caregivers not
employed outside the home.

The correlation coefficient for hypothesis 2 was - .01, indicating again that
there is a slightly negative relatiomhip between caregiver fatigue and employment
status in the caregiver ofthe cancer patient. However, this finding is not
statistically significant (p a .42) at the p<.05 level of significance, therefore, the
hypothesis is rejected.

Analyzing the question utilizing the severity subscale, the correlation
coefficient was .04 (p = .26), which is not statistically significant. Analyzing this

hypothesis using the WTCF subscale, the Pearson r = -.13 (p = .03). This finding

Table 8

nglation of Study Variables to Fatigue

55

 

 

Total Fatigue Severity WTCF
Scores (1-17) Subscale Subscale
N = 248 (1-12) (13- 17)
Age -.03 .01 -.13
p=.30 p=.43 p=.02*
Employment -.01 .04 -.13
p=.42 p=.26 p=.03*
Hours of .09 .09 .06
Care p a .06 p = .08 p = .16
Duration of .00 .03 - .06
Caregiving p=.48 p=.33 p=.19
Impact on .41 .42 .22
Schedule p - .00‘I p = .00" p = .00‘

 

‘Indicates statistically significant findings.

56

is statistically significant, therefore the hypothesis can be accepted when using the
WTCF subscale.

W: The greater the number of hours of daily caregiving
reported, the greater the fatigue experienced by
caregivers.

The Pearson Correlation Coefficient was used to examine the potential
relationship between number of hours of caregiving reported and reported fatigue
among the caregivers of cancer patients involved in this study. The Pearson r was
.09, indicating a positive relationship between number of hours of care reported by
caregiversandthefatigueexperiencedbythispopulationwé .06). Thisf’mdingis
not statistically significant at the p<.05 level, but is approaching significance.

Analyzing this hypothesis using the severity subscale, the correlation
coefficientis .09 (p- .08). Thisfinding isnotstatisticallysignificant, andthe
hypothes'scsnbe rejected. Analyzingthisquestionusingther‘CFsubscale, the
Pearson r a .06 (p - .16), which is not statistically significant, therefore the
hypothesis can be rejected.

WA: The longer the duration of caregiving the greater the

fatigue experienced.

The Pearson Correlation Coefficient was used to determine any potential
relationship between the duration of caregiving and the fatigue that the caregivers
reported. The correlation coefficient for this question was .00, indicating that
essentially no relationship exists between the fatigue reported and the duration of
care reported bythe caregivers ofcancerpatients(p= .48).

Analyzing this hypothesis utilizing the severity subscale, the correlation
coefficientis .03 (pa: .33). UsingtheWI‘CFsubscale, thePearsonr= .06(p=

57

.19). These findings are not statistically significant. This hypothesis can be
rejectedusingallthreescalesandsubscales.

W: There is a relationship between the fatigue
experienced and the impact upon schedule reported
by the caregiver.

Pearson Correlation Coefficients were used to determine if a relationship
exists between caregiver fatigue and impact upon schedule experienced by the
caregiver. The correlation coefficient for this hypothesis is .41, (p a .00)
indicating that a positive relatiomhip exists between reported caregiver fatigue and
the impact upon schedule that the caregiver reports. Therefore, the hypothesis can
be accepted.

Analyzing this hypothesis utilizing the severity subscale, the correlation
coefficient was .42 (p a .00). Analyzing the question using the WTCF subscale,
thePear'sonrwas .22(p- .00). Allthreefindingsarestatisticallysignificantat
the p<.05 level of significance, and therefore the hypothesis is accepted using all
three instruments of fatigue.

Disgusting
The following section will be a discussion of each one of the findings as

these findings appear in the previous section. Sixty- five percent of the caregivers
are over the age of 50, while seventy-one percent (N = 160) of the cancer patients
are over the age of 50. The majority of caregivers participating in this study
(65%) are female. The educational level of caregivers is fairly evenly distributed
with only about 19% at the college graduate or above level and only 2% at the
grade school or less level. Also 50% of the caregivers reported being employed,
while 50% of the caregivers reported not working. This is probably explained by

58

considering that the majority of the population is over 50 years old, and may be
retired or close to retirement age. Twenty-two percent of the respondents have an
annual household income of at least $50,000, while six percent reported income
under $10,000. Therefore, 72% of the participants’ yearly income ranged between
$10,000 and $50,000. The duration of caregiving ranged from one month to 216
monthswithameancaregivingtimeoftwentyfourmonths. The hoursofcare
thatthecaregivers reported rangedbetweenOto24with meanof4.3 hoursof
daily care.

Thetotalfatigue scorewasobtainedfromthemeanofquestions 1-17 of
the Piper Shortened Fatigue Scale. Ninety- five caregivers (38%) complained of
slight fatigue (a mean of 1 to 7 on fatigue scale). Eighty caregivers (32%)
complained of moderate fatigue, (a mean of 7.01 to 11.0 on the fatigue scale).
Sixty-seven caregivers (28%) complained of experiencing severe fatigue in their
caregiving role (a mean of 11.01 to 21.0 on the fatigue scale). The complaints of
fatigue by caregivers varies quite widely across this scale (see Table 6).

 

Hypothesis 1: No correlation was found between either the total fatigue
score and caregiver age, or the fatigue severity subscale and caregiver age. Notice
thatthe majorityofcaregiversareovertheageof50. Increasedcaregiverage
alone did not indicate or lead to a higher level of fatigue. Perhaps the slightly
negative relationship indicates that as caregivers age, there are less conflicting
roles for the caregiver to participate in and therefore, the caregiver can fulfill the
caregiving role with less fatigue experienced because of less role conflict. No
literature was found discuning the relationship between age and fatigue.

59

A statistically significant inverse relationship was found, however, between
caregiver age and the WTCF subscale, perhaps indicating that as the caregiver
ages, fewerofthemethodsthatmayhavebeenpreviouslyutilizedtocombat
fatigue successfullycurrentlyare usedorwork forthecaregiver.

Hypothesis 2: No relationship between caregiver severity of fatigue or
total fatigue and employment exist in the caregiver of the cancer patient. Perhaps
the slightly negative relationship indicated that working caregivers are slightly less
fatigued for various reasons, such as working people may be better organized
because of the increased number of roles, and getting out of the house provides
diversion which may alleviate the fatigue and depression that the caregiver may
otherwisefeel. 'l‘hosecaregiversstillworkingmayhavelessillpersonsathome
thattheyarecaring fortherebyallowingthesecaregiverstocontinuetheir
employment. _

Astatisticallysignificantinverserelationshipwssalsofoundtoexist
between caregiver employment status and the WTCF subscale, indicating that
thosecaregiverswhoareemployedarenotabletoutilizethedifferentwaysto
. combat fatigue successfully, mostlikelyduetothetimeconstraintsthatthe
employment and caregiving roles place upon the caregiver. Goldstein, Regnery
and Wellin (1981) concluded that the energy demands and expectations of
camgivingandmoseofothermlesthatthecaregivermayhaveamsometimesnot
easilyreconcfledwimeachothercausingincreasedtensionandconfliainthe
caregiver.

Hypothesis 3: In this sample of cancer caregivers, a positive nearly
significant relationship was found between the number of hours of daily care and
both the total fatigue score and the severity of fatigue experienced by this
population. Though no study reported on the relationship between fatigue and the

60

number of hours of caregiving, Bartlett (1943) clearly established the pattern of
breakdown in performance which occurs in fatigue related to the number of hours
of work.

There was no significant relationship found between numbers of hours of
care and WTCF subscale.

Hypothesis 4: No relationship existed between duration of care and either
thetotal fatigue scale oreitherofthetwosubscales. Thebasis forthishypothesis
wasthatcaregivingovertimetakesanemotionaltellonthe caregiver. The
findings from this study are supported by Haylock and Hart (1973) who found a
physical rather than psychological basis for fatigue in their population of cancer
patients.

Hypothesis5: Therewasapositive relationshipbetweenthe reportedtotal
fnigue score, the severityandWl‘CFsubscalesand impactupon caregiver
schedule. All of these findings are statistically significant at the p<.05 level.
Therefore, the more that the caregiver’s schedule is a burden to the caregiver, the
greater the fatigue experienced.

Utilizing the total fatigue score, and the severity subscale, the
characteristics of caregiving considered (age and employment status) and the
duration of care, did not affect the fatigue experienced by the caregiver of the
cancer patient. However, impact on the caregiver schedule did affect the fatigue
experienced by the caregivers.

my:
InChapterV, datawerepresentedwhichdescribethecharacteristics ofthe
sample, reliability of the instruments, and analysis of the data with respect to each
of the five hypotheses. The Piper Fatigue Self- Report Scale was found to have a

 

61

reliability of .89, while the alpha of the ’severity of fatigue’ subscale was .89, and
the alpha of the ’Wl‘CF’ subscale was .86. The ’impact on schedule’ subscale
reported an alpha of .84 (Given, 1987).

No relationship was found between caregiver fatigue and the
characteristics of care: age and employment status, or hours of daily caregiving or
duration of care. However, a statistically significant relationship was found
between caregiver fatigue and impact on schedule.

In Chapteer, the summaryandconclusions forthisthesiswillbe
presented.

 

InChapterVI, asummaryandinterpretationofthe research findingsare
discussed. Implications for nursing practice along with recommendations for

future research are offered.

W

A sample of 248 caregivers of cancer patients participating in the Family
HomecareCenterStudyweresurveyedregardingthefatigueexperienced related
totheircaregiving roles. Theconceptoffatigue, because it isambiguousand
subjective, has been difficult for the health care professional to define, measure
andtherefore, totreatinboththepatientandinthecaregiverpopulation. Fatigue
in the patient population more likely has physiological origins, but in the
population of caregivers, fatigue may be physically or psychologically induced and
therefore, treatment, to be most effective, needs to focus on these causes.

King (1981), a nursing theorist, maintains that the nurse’s role in
alleviating the fatigue of the caregiver is to encourage open communication
between the caregiver, patient and the nurse regarding problems of both the
patient and the caregiver. The nurse must be aware ofthe characteristics of the
caregiver such as age and employment status. After the caregiver has
communicated whatever problems he/she has, such as fatigue, the nurse must also

be aware of the various processes of care such as duration of the caregiving role,

62

63

number of hours of daily care given and the impact of caregiving on the
caregiver’s schedule. Taking both the characteristics of the caregiver and the
processes of care into account when considering a problem such as fatigue, the
next step is mutual goal setting to alleviate the problem, along with appropriate
caregiver education. The nurse, then, is the facilitator in this process.

Though fatigue has been researched by industrial researchers as well as
health care researchers, no one definition, or instrument to measure the concept,
or best way to treat the complaint has emerged. In fact, there have been no studies
researchingthe fatigue experiencedbythecaregiverofthecancerpatient.
However, Piper (1985) has developed a definition of fatigue using a nursing
perspective and is inthe process ofdeveloping and refining a self-report analogue
scaleasaninstrumenttomeasuretheconceptoffatigue. ,

In the present research, fatigue was self-reported using a shortened form
ofthe Piper Fatigue ScaleatWave l ofthe FamilyHomecare CancerStudyby
248caregivers. 'lhepurposeofthisstudywastoinvestigateanddescribethe
experience of fatigue in the caregiver ofthe cancer patient in relation to the
characteristics of the caregiver: age and employment status, and in relation to the
processes of caregiving: the number of hours of daily caregiving, the duration of
caregiving and the impact of caregiving upon the caregiver’s schedule.

Because the total fatigue scale incorporates two different subscales
measuring two different aspects of the concept of fatigue: severity and ways to
combat fatigue, andbecausethetotal fatiguescaleisnotashelpfulinassessing
andplanning nursing interventionsasthetwosubscalestakenseparately, no
further discussion of the total fatigue scale will be presented; only the two
subscalesandtheirlelationtothestudyvariableswillbediscussed.

64

After the results were analyzed, the findings revealed that the majority of
the caregivers were female, and over the age of 50. No relationship was found
between caregiver age and experienced fatigue severity, or between the
employment status of the caregiver and fatigue. No relationship was found
between duration of caregiving and the severity of fatigue experienced, or
between the number of hours of daily care reported and experienced fatigue
severity. However, there was a positive, significant relationship between impact
on caregiver’s schedule and fatigue. There was a significant relationship found
between caregiver age, employment status and impact on schedule in relation to
the WTCF subscale.

W

There was no relationship between experienced fatigue and caregiver age,
employment status, the number of hours of daily caregiving or duration of
caregiving. Therewasa relationshipbetweenboth severityoffatigue andthe
WTCF scale and impact upon schedule. There was an inverse relationship between
both caregiver employment and age in relation to the WTCF subscale.
Wham.

Hypotheses 1, 2, 3, and4werenotsupported. Therewasnorelationship
found between the severity of fatigue experienced by the caregiver of the cancer
patient and caregiver age, employment status, the number of hours of daily
caregiving, or duration or caregiving. There were no studies investigating
caregiver age, employment status or duration of caregiving and the possible
relationship of these variables to caregiver fatigue, therefore, no statement of
similarities or dissimilarities can be made. Even though no relationship was found
between fatigue and each of these variables independently, this author contends

65

that each of these variables should be considered in conjunction with the other
variables contained in the characteristics of the caregiver and the processes of
care, perhaps yielding increased relationships between these variables and fatigue.

Even though the relationship between the number of hours of daily care
and severity of fatigue was not statistically significant, the correlation approached
significance. Thoughnostudyreportedontherelatiomhipbetweenfatigueand
number of hours of caregiving, Bartlett (1943) clearly established the pattern of
breakdown in performance which occurs in fatigue related to the number of hours
of work. Haylock and Hart (1973) found a physical rather than psychological
etiology of fatigue existed in the population of cancer patients. Goldstein,
Regnery and Wellin (1981) found that in a population of 60 caregivers of long
termpatientsthe time, place, energydemandsandexpectations ofcaregivingand
those of other conflicting roles caused increased temion and fatigue levels. The
findings ofthis research support these studies.

An inverse relationship was found between caregiver age, employment
status and the WTCF subscale. This finding would indicate that as caregivers age,
either fewer ways to alleviate fatigue are attempted or fewer of these methods are
effective for this population. Also, the WTCF scale may not be appropriate for
elderly caregivers because of normative changes associated with the aging process,
such as a decreased desire and need for sleep. Therefore, the elderly caregiver
may not perceive sleep or napping as an appropriate way to alleviate fatigue.

Aninverse relationshipalsowasfoundtoexistbetweencaregiver
employment status and the WTCF subscale, indicating that possibly because of the
role conflict between working outside the home and caregving, the caregiver is
not able to utilize such methods as naps, exercise, distraction and planned rest
periods. Goldstein, Regnery and Wellin (1981) discussed the role conflict inherent

A /_

66

inthecaregiving role, whileStetz(1987) discussedthecaregivingdemandson
thosepersomcafingforindividualswithcancerandconcludedthatmanaging
physical care and the resultant changes in lifestyle were two ofthe most difficult
demands that caregivers face.

Hypotheses #5 was supported. There was a relationship between caregiver
fatigue severity, the WTCF scale and the impact upon the caregiver’s schedule. A
strong relationship existed between fatigue and impact on schedule. This finding
has strong implications for the health care professional because the more the
caregiver’s schedule is a burden to the caregiver, the greater the fatigue
experienced.

mm
Merpretationofthefindingsofthissmdyareofferedwitheautionbecause

ofseveralseriouslimitations. First,thePiperfatiguescale, utilizedtomeasure
fatigueinthecaregiver, isavisualanaloguescale. Somecaregivershave
difficultyunderstandingthedirecfionstothiskindofsealeandresponding
accordingly. Only 248 caregivers, out of 303 participants completed the Piper
fatigue scale completely enough to be included in this study (completing 10/ 17
items), and 28 respondents didn’t complete the questionnaire at all. The reasons
why these twenty-eight caregivers did not complete the self-report fatigue scale
arenotknown. Also, the fatiguescalewasdifficulttoscorebecausesome
participants marked their 'x' above the line, while others marked substantially
below the line, possibly decreasing the reliability of the measurements.
Inaddition, neitherthecontentorconstnlctvalidityhasbeenestablishedin
thecaregiverpopulation. ThePiperscalewasdevelopedandtestedinthecancer
patientpopulationandhasnotbeentestedinanyotherpopulation. Finally, the

67

caregivemparficipafinginthisnudywerenotmstmctedasmanyspecificfimeto
fill out the self-report scale, therefore, some may have filled the scale out in early
morningwhentheywere refreshed, whileothersmayhavefilleditoutlateinthe

daywhentheywere more fatigued.

Anotherlimitationofthisstudyisthe factthattheremaybemanyother
interveningvariables suchasphysical, mentalandemotional health ofthe
caregiver, and involvement in other roles that are not controlled for or measured in
thisstudy. Also, thevariables includedinthe characteristicsandprocesses of
caregivingwereconsidemdindependenflyofeachother,whenperhapsifthey
wereconsideredtogether,theresultsmayhavebeendifferent.

Wm

Based upon the findings ofthis research, several recommendations are
advanced. Piper’s definition of fatigue is useful because it incorporates the four
dimensions of nursing; however, this definition is difficult to quantify and
therefore to operationalize, making measurement of the concept more difficult.
Therefore, this author proposes an eclectic definition that attempts to make
fatigue more understandable:

Fatigue may be acute, normative or chronic . . .a subjective feeling

existingatonepointintimeonacontinuum fromwearinessto

complete exhaustion, resulting from physical, mental or emotional

activity. Acute fatigue is most often caused by excessive physical

or mental exertion and can be relieved by rest. Normative fatigue

maybe influenced bycircadian rhythmand results from the

activities of daily living, while chronic fatigue is most often the

68

result ofprolonged stressortensiononthebodyand isless likelyto

be relieved by rest alone.

This definition will allow the health care professional to separate the different
kindsoffatiguetheclientmaypresentadthandtoplaninterventionsbasedupon
the type of fatigue experienced.

To most effectively meet the needs of caregivers who currently experience
fatigue orthose who mayinthe future, the CNS must firstunderstandthe
predictors of fatigue. These predictors would include the characteristics of the
caregivers and the processes of caregiving, but would also include consideration of
physical, emotional, mental, social and medical or health demands that the
caregiver experiences.

Each of these predictors of fatigue in caregivers must be assessed .
independenflyandmconjuncfionwiththeothenmdetermineifthepotenfialfor
fatigue exists. The fatigue experienced by the caregiver may be acute, normative
or chronic. Interventions will be determined bythe predictors of fatigue and the
kind of fatigue the caregiver experiences (see Figure 2).

Further, based upon the findings ofthis research and King’s theory of goal
attainment (1981), a slightly different model from that proposed in chapter two is
nowproposed (Figure 3). Notethattheprocessesofcarehavebeenmovedtothe
interpersonalsystemofthecaregiverandpatient. Also, notethatthepersonal
system of the nurse is srnallerthan in Figure 1, signifying that though the nurse
can have an impact on the caregiver and the patient, other health care professionals
also have input. Also, the nurse is involved with the caregiver for just a small
portion of the caregiving time, both in and out of the caregiving situation. The
CNS must be efficient, effective and empathetic when dealing with the caregiver
and the patient.

69

 

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71

In addition, evaluation of the interventions is a necessity, along with
continued reassessment of portions of the characteristics of the caregiver and the
processes of care. Based upon evaluation of the interventions, continued
assessment of these predictors of fatigue, and also continued communication
between the nurse and the caregiver, new, mutually agreed upon goals and
interventions might be advanced. Continued communication and reevaluation is
necessary especially if the condition of the patient deteriorates and caregiving
demands increase.

A final recommendation concerns the Piper Self-Report Fatigue Scale.
Analogue scales are extremely effective for measuring severity of a subjective
concept such as fatigue (Gift, 1989). Therefore, items 1 through 12 on Piper’s
shortened form are valid measures of fatigue. However, this author would further
recommendthata ’notapplicable’ boxbeaddedtoeachquestion. Many
participants didn’t answer some of the questions, but did answer others, possibly
. becausecertainquestionsdid notapplytothemandtherefore the participants left
them blank giving missing data. By adding the ’not applicable’ box, the
participants would be able to indicate which question did not apply to them,
thereby giving increasinsly meaningful data-

Furthermore, items 13-17, the WTCF subscale does not measure the
intensityoftheconceptbut measuresinsteadwaystocombatthe fatigue
experienced. The health care professional should be assessing the caregiver’s
understanding of the various ways to combat fatigue, perhaps this information
couldbe gleanedbyutilizingaLikert fivepointseale forthese orsimilar
questions.

72

MW

Asourpopulationagesandhealthcarecostscontinuetorise, the numberof
caregivemofpafieMfivingathomewithbothterminalandchMcfllnessesadfl
also continue to rise. The Clinical Nurse Specialist (CNS)'will increasingly be
dealing with this population who will be presenting with various complaints, some
acute and others chronic possibly relating to the caregiving role. As in our
population of caregivers, fatigue may be a presenting complaint of some of the
caregiversthatpresenttothehealthcareprofessionalinthe future. The CNS
must identify effective assessment strategies and interventions for prevention of
fatigue as well as for restoration in the caregiver population.

In the present research, the conceptual model (Figure 3) is derived from
King’s (1981) theory of goal attainment. Using King’s (1981) theory to guide
nursing practice, it is understood that individual beliefs, perceptions, and values
areformedpriortoenteringtheinterpersonslsystemwiththehealthcare
provider. Therefore, it is within this system that the nurse and caregiver develop a
common, shared understanding forworkingtowardthe mutuallysetgoal.

InthepersonalsystemofthecaregiveflFigure 3), the CNS mustbeaware
of the various characteristics of the caregiver such as age, employment status, and
the number of other, possibly conflicting, roles that the caregiver has. In the
present study, neither age nor employment status, considered alone, exhibited a
relationship with the severity of caregiver fatigue. However, the CNS must be
cognizant of the potential for these variables to adversely affect the caregiver’s
abilityto function in his caregiving role. In the interpersonal system (Figure 3),
the CNS must further be aware of the processes of caregiving, such as the number
of hours of daily care rendered, the duration of the caregiving experience and the

impact of caregiving upon the caregiver’s schedule.

 

73

Further, the CNS must be cognizant of the potential for fatigue that exists
for the new caregiver whenever a newly diagnosed cancer patient presents for
treatment. Therefore, interventions to prevent fatigue for the new caregiver will
be presented along with potential interventions for existing caregiving fatigue for
thecaregiverofthecancerpatientwhopresenttothe CNSbothdirectlyasaclient
or indirectly as caregiver to the client.

Whenanewlydiagnosedcancerpatientandhis/hercaregiverpresentsto
the CNS, this research indicates that fatigue may be a problem. The CNS must
have interventions available to prevent or decrease the fatigue that is most likely to
occur. Using anticipatory guidance, the CNS should review the disease process
andtreatrnentmodalitieswithboththepatientandcaregiver, alongwiththe
changes in the activities of daily living of the patient that may occur. The CNS
shouldexplomcopingmecthnsinphcewimmedyadandmveuigatethestress
reduction techniques that the caregiver and patient normally use. If the coping
mechanisms and stress reduction techniques are not sufficient, the CNS, along
withthepatientandcaregiver, shoulddecidetheappropriatecopingandstress
reduction techniques to incorporate and assist the dyad with these new behaviors.

Further, the CNS should asm'st the new caregiver with priority setting with
ngardmcangivingdemandsandothersocialobfigatiommatthecangivermight
have. Other aspects of caregiving that the CNS might explore with the caregiver
is time management, allocation of resources and the exploration of seeking help
from family members, friends and other forms of social support. For example, the
CNS might suggest that the caregiver utilize a chore person while the caregiver
was at work, or plan a time on the weekend when for a few hours a family member
would come to the caregiver’s home so thn the caregiver could attend church, go
outtoeatwith friends, ordosomeshopping.

74

lfthecaregiverpresentstotheCNS indirectly, accompanyingthepatient

to the health care professional, the CNS has less time available to intervene with

thecaregiver. Therearestillinterventionsthatthecaregivercanutilize.

However, the assessment of the causes or predictors of fatigue might be more
difficult to obtain.

After fatigue has been identified by the caregiver as a problem, the CNS
must, withhis/herknowledgeofboththecharacterisficsofthecaregiverandthe

promesofcaregiving,suggenmtewenfionsthatarebothfeambleandeasfly
implemented. Theseinterventionsneedtobepresentedtothecaregiverinanon-
threateningwaysothatthecaregiverwillchoosesome,orall,ofthestrategiesin
themunmlgoalsettingpmcedurethatisessentialiftheintewenfionsarembe
successful. Someofthe interventions may include strategies includedinthe
WTCFsubscale. Thoughtheseinterventionsshouldbeappropriatefortheageof
the caregiver, potential interventionstobeconsidered include:

1.

k .. ,,

Encourage caregivertokeepdiaryofactivitiesthatincrease
perception of fatigue.

Encourage daily rest periods of pre-set lengths and pre-determined
Instructearegiverinenergysaving techniquesofdailycare (proper
bodymechanicswhenlifting, preparemealssittingonahigh stool
rather than standing, etc.).

Encourage progressive activity, schedule moderate increase in
exerciseonadailybasis(eg. walkingaroundtheblockorinamall
with a friend).

Determine motivations or hobbies of caregiver for activities.

 

75

6. Teach relaxation methods to deal with the stress of caregiving
demands.

7. Provide opportunities for allowing caregiver to express concerns
regarding the caregiving role.

8. Encourageandprovideancillarypersonneltoassistthecaregiver
withthe roleasdeterminedbytheassessmentbythe CNS astoboth
the characteristics of the caregiver and the processes of caregiving:

a. chore person

b. aide or orderly assistance
c. LPN or RN

d. physician

e. Physical therapist or occupational therapist
f. psychiatrist or psychologist
s- caregiver support groups
9. Encourage medical/CNS evaluation to rule out physiological causes
of fatigue.
10. Encourage use of respite services, or a planned time daily for self.
If these interventions have been implemented and fatigue develops or
continues, thenperhapsifthecaregiverisemployedandisabletotakealeave of
absence or retire early, this is a plausible alternative for the CNS to explore with
thecaregiver. The CNS maybeabletoexplore other rolesthecaregiverhasand
dcterminewhichones, ifany, thecaregivermaybeabletosurrenderatleast
temporarily, in an attempt to alleviate the experienced fatigue.
If the caregiver presents to the CNS with the complaint of fatigue, then
therearevafiousassesnnemtechuesavailabletodeterminethecausesof
caregiver fatigue. Based on the findings of this research, the fatigued caregiver

76

would also report a greater impact upon his/her schedule. However, to fully
understand the causes of the caregiver’s fatigue, a thorough assessment is
necessary.

First, athorough historyandphysical shouldbeconductedto rule out
medical problems. Data to be collected includes age, employment status, the
number of other roles that the caregiver has, involvement as measured by activities
of daily living, nutrition and exercise assessment and significant medical history.
Todeterminehowweuthecaregiveriscopingwiththeincreaseddemandsof
caregiving, a psychological examination may be utilized. A caregiver evaluation
shouldbedonetoinvestigatethecomponentsofthecharacteristicsofthe
caregiver and the processes of care (see Figure 3). Next, a physical assessment
should be completed with appropriate laboratory tests to rule out physical causes
offatigue. Finally, thecaregivershouldbeinstructedtofillouttheseverity
fatigue scaleeverydayforsevendaysattheendoftheday, andtokeepadiaryof
daily activities for the week.

After one week, the caregiver should bring in the completed fatigue scales
anddiary. TheCNSshouldthenreviewthefindingsandresultsofthe
examinationandlaboratorytestswiththecaregiver. Basedupontheneedsofthe
caregiver, thetypeandcausesoffatigueandtheresultsofthehistoryand
physical, the CNS can determine appropriate interventions and with the caregiver,
mutually set goals for the caregiver to utilize to alleviate fatigue. These
interventions may include many of those interventions listed previously. At each
visit, the CNS should reevaluate the success of the interventions and make changes
as the need arises.

From the present research, the CNS knows that the severity of fatigue does
not rely on age, employment status or duration or caregiving. However, the CNS

77

alsoknowsthatthosecaregiverswhoareeldedyeitherdonotlmowaboutthe
variousmethodstodecrease fatigue suchasdistractionorplanned restperiods, or
the caregivers have tried these methods and been unsuccessful for one reason or
another to decrease the fatigue experienced. The CNS must then ascertain
whetherthecaregiverknowsofthesemethodsandhastried them. Ifthe caregiver
isn’t aware of these methods to decrease fatigue, the CNS should educate the
caregiverastotheuseofeachofthesemethodsandthebesttimetousethemfor
optimal results.

TheCNSalsoknowsthatthosecaregiversthatworkmaynothavetimeto
utilize these fatigue reducing techniques, and so the CNS must explore with this
caregiverhowandwhenthecaregivermightbeabletoufilizethesetechues
successfully given the role conflicts that exist between caregiver employment and
the caregiving role. Therefore, the CNS must first determine the knowledge base
of the caregiver regarding the various ways to alleviate fatigue, and then explore
with the caregiver the optiom which may be available. For example, the CNS
might suggest that the caregiver use planned rest periods following dinner, or the
use of distraction techniques such as the caregiver watching his/her favorite
comedy for one hour each night.

The principle of participation asserts that people are more likely to change
andtomaintainthechangeinbehavioriftheyhaveparticipated activelyinsetting
goals and strategies for change (King, 1981). Therefore, the CNS must first
understand the concept of fatigue, its causes and effect upon the caregiver. She
mustthenconsiderautheknowncharactefisficsandpmcessesofcaremheremto
the caregiver and then design interventions mutually with the caregiver to alleviate
the problem of fatigue. King (1981) states that individuals have a right to
knowledge about themselves, to participate in their own health care decisions and

78

that nurses have the responsibility to share information that helps caregivers make
informed decisions regarding their interventions and treatment.

 

Thenursingprofessioningeneralneedstodevelopappropriate
interventions for those persons presenting with the complaint of fatigue. The
concept of fatigue, in relation to nursing science, has not been included in most
undergraduateorgraduatenursingprograms. Therefore, thisconceptneedstobe
included in the curriculum of nursing schools, along with appropriate
interventions. One goal of education for the client is to increase the level of health
knowledge concerning the importance of symptoms and the potential for treating
the ailments. At the present time, the causative mechanisms of the fatigue
phenomenonremainunknown. Interventionsregardingthisphenomenonmust
remain focused upon symptom management and relief. Therefore, nursing in
generalmustthomughlyunderstandthenursingpmcesswithanemphasisupon
assessmenttoadequatelyassessthecomponentsofcaregiving with regardtothe
presenting complaint of fatigue. The nurse must assess both the characteristics of
thecaregiverandtheprocessesofcaregiving. ThenurseattheADN, BSNor
MSN level should know specifically that the more daily care the caregivers render,
the more fatigue will be experienced, and the more the caregiver’s schedule is a
burden to the caregiver, the greater the fatigue experienced. The CNS must also
assess the older earegiver’s knowledge base as to the self-care techniques for
alleviating fatigue such as napping, pre-planned rest periods, use of distraction
techniques and sleep to see if the caregiver is using these techniques properly or
not at all. The nurse can then teach the proper methods to effectively combat

fatigue to the caregiver.

79

Thenurseshouldalsoassesstheworkingcaregivertoseeifself-care
techniques for alleviating fatigue can still be used considering the decreased
amountoffimethatthecaregiverhasavailablewiththeincreasednumberof
conflictingrolesthecaregiverexperiences.

Nursingatalllevels mustbeincreasinglycognizantof the problems of the
caregiver. Further clarification and elaboration of adaptation to the role of the
caregiverdufingvafiousstagesofcancerandotherchMcdiseasesisneeded.
Nursingmustbeawarethatthecaregiverisnotasilentobserver,butasamember
of the patientandcaregiver dyad,bothaffectsandisaffected bytheillmember’s
cancer.

Nursingmustalsobecognizantofthepotentialforcaregiverfatigue,
eitherasareportedorunreportedproblem. Thoughmuchmoreresearchneedsto
beconductedmgardingthecausesoffafigmfiheeffecfiofthisphemmemnupon
thebodyiswendocumentedandvadousmwentionsexisttocommlthefatigue
experiencedbythispopulationr

Nursesalsoneedtoknowthatbeforeaninterventionwithacaregivercan
benwcessfmmoththecaregiverandthemlrsemustmumanydetenninethatthe
interventionscanbesuccessful (King, 1981). Therefore,awell designed program
to effectively alleviate caregiver fatigue would include: a definition of the
concept using a nursing theorist such as Piper’s definition of fatigue, the nurse
Wefthechamctefisficsofthemgiverandmeprocessesofcamgiving,
measurement of the severityoffatigueusingPiper’s Self-Report Scale (items 1-
12), determination of appropriate interventionsbasedupontheeharacteristics of
caregivingandthe processes of caregivinganduponthecaregiver’s preference,
andfacilitation of the caregiver reachingthesegoalsbythe nurse.

8O

 

The concept of fatigue, acute and chronic, physically induced,
physiologically induced, or psychologically induced needs to be researched
further. Fatigue needs to be evaluated in different populations. Specifically, in
the caregiver population, fatigue should be studied longitudinally from the
beginningofthe caregiverexperiencetopossiblyoneyearafterthe experience is
over. By studying fatigue in this way, researchers could determine how fatigue
changes as caregiving responsibilities increase, how fatigue changes with the death
ofthepatient, andifandhowfatigueisexperiencedintheadjustmenttoanon
caregiving role. Bystudying fatigueinthisway, andtakingintoaccountother
variablessuehasthose includedincharacteristicsofthecaregiverandthe
processes of care, other conflicting roles the caregiver has, and possible co-morbid
conditions, healtheareproviderscouldgetamorerealistic ideaofthe problem or
caregiverfatigue, andthecausesandeffectsofthisconcern. Perhapsbetter
strategiescouldthenbedevelopedtodealadththiscomplaintbycmrducfing
clinical trials with ways to alleviate and overcome fatigue.

The Piper Self-Report Scale measuring severity (items 1-12) has a good
reliabilityandperhapsthissealecanbe furtherdevelopedand refined foruse in
this population. However, further research for a different, possibly easier to use
instrument should continue.

Beeausenoresearehwasfoundinwhichthe relationshipbetween
caregiving ageandfatiguewasdiscussed, andbecausethepopulationisagingand
the number of caregivers of older persons will continue toinerease, more research
is necessary possibly considering such potential intervening variables as caregiver
health, social isolation of the caregiver and depression. Another facet of caregiver
fatigue not previously researched is the gender differences. Understanding how

81

male caregivers differ from female caregivers in dealing with caregiving demands
and the accompanying fatigue will better enable the nurse to propose appropriate
Thestudyproposedbaseduponthefindingsofthis research would
investigate and describe the experience of fatigue in the caregiver of the cancer
patientandcomparethisexperiencetothe fatigueexperiencedbythecancer
patient. The studywouldbeatwoyearlongitudinalstudywiththe caregiver
completingthe studyoveratwoyearperiodandthepatientmayormaynotbe
able to complete the study. The methodology would include utilization of the
Piper Self-Report Fatigue Scale (items 1-12) to be completed at bedtime every
three months fortwoyearsforboth populations. Includedinbothpopulmions
muldbeameasureofthenumberofroleseaeh memberofthedyadhas, the
numberofhoursofworkoutsidethehomeperformedbybothmembersofthe '
dyad, alongwithsconsiderationofthephysicslhealth ofthecaregiver. Inthis
research, the difference between acute, normative and chronic fatigue in the
caregiver would be described in different age groups, and fatigue could be
examinedovertimetodetermine howthecaregiverfatiguechangesasearegiver
demandsincrease, andhowfatiguechangeswiththedeathofthespousewiththe
possibility of depression over the loss, but decrease in demands and role conflicts.
Further, the CNS could set up an experimental design focusing on stress reduction
activities for the caregivers. The interventions found to be most effective in
alleviating fatigue could then be included in the nursing curriculum. In summary,
much more researchisneededtounderstandthephenomenonoffatiguebothinthe
ill population and in the well population, specifically in the caregiver population.

82

m

In Chapter VI, a summary and interpretation of findings was presented.
Findings were related to the conceptual framework of this study and the nursing
theory. Recommendations for nursing practice, education and research were
presented.

InChapterVI, acontentanalysisofthedatarevealedthattherewasa
relationship between the severity of caregiver fatigue and the impact upon the
caregiver’s schedule. There was also an inverse relationship between both
caregiver age, employment status in relation to the ways to combat fatigue
effectively.

Theproblemsencounteredwiththeresearchinstrumentswerediscussed
and recommendations for future investigations were presented. Additionally, the
findingswere relatedtotheconceptual frameworkandnursingtheoryaspresented
in the study with recommendatiom for nursing practice provided.

In summary, caregiver fatigue is a concept worthy of further, more indepth
research. It is only with the results of research that health care professionals can
hope to have a more positive impact on their patients, many of whom could be
family caregivers of cancer patients.

83

APPENDICES

84

APPENDIX A

85

293.33 a. o5 >532 8. 83323.. 393”.
rotates 59:23.;

 

 

 

 

mints. 369: d Wimp—«a 65W—

 

 

 

 

 

. Wants. 933.3—

 

 

 

 

 

 

 

555... BESEQT

 

 

 

 

 

 

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g >8!w 6 mg

- Tints. 1.8M—
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9.99
p

 

 

 

 

 

 

 

 

86

APPENDIX B

87

DIRECTIONS:
Mdthsbflo-hgqmsddn-un-oscuvttyoshdhgwhtehmbonhhdbm
iguana.lbssachtitho-stuulfln-syonnwfllhorlinddoliacssur‘lfthsouohalflno.ThhsTXV
Whphcdehthamspdmthhhmwhlehbthhdsthwuehm
mmhmvflyubdtw.hrmphflmmnyuhbshsphhmtho
announce.sndqnarInnsssh-dthslcflcunnquqlllflnle!°flllfllhtalluos:

l. Thwhatdswosdoyouunllylthbslosphblnthom?

Notatsll M———x—Acnddasl

mmwwmm Hmonldcdydssplahhtheucmon
Wflm.flmmshdhmwmmm

 

2. Howhquutbmmsbhbdosphtbmmuflm
"chads?
Saldc- —! (En-ab) oa-

PLEASE was Tl! PAGE AND BEGIN THE mourn “STIMIK.
THANK m1

CODWOMI Select“ fra 1984
Barbara Piper. Rut!“ 3/9/87.

88

silver ‘
can: -
%"-J- J.
reticent-outsells: mm;
summon-mom Study;

For each of the following questions, place en fr- throuyi the line at the
g; spot inch m describes the fatigue are experiencing now. If
you are m experiencing fatigue, descri what you experienced m.

1. To inst dewee are you experiencing fatigue now?

 

 

Io fatigue A greet desl
of fatigue
2. lies severe is the fatigue uhich you are experiencing now?
he fatigue A greet desl
- of fatigue

3. How long have you been feeling fatigue?
Days lists

4. how would you describe the fatigue tslich you re feeling now?
internist-It Continuous

5. To whet degree has your fatigue charged in the pest weir?
Decreased Increased

For each of the following questions. place an '1' througi the line at

the gs! spot tench indicates the degree of distress or interference
you are experiencing it today‘s activities as a result of your fatigue.

6. ls the degree of fatigue you are feeling causing you distress?

lo distress A great deal
A of distress

7. Overall, how melt is the fsti gue tdiich you are experiencing now interfering
with your abilityto enng in the kind of activities you enjoy doing?

lone ~ A great desl
8. flow would you describe the degree of intensity or severity of the fatigue
which you are experiencing now? _ ,
Mild Severe

\

WW fr- llt We "It. his“ 319/07

14

8-13
14-15

17

1'81?

2021'

2223

2725

2827

2829'

5051'

3233’

89

 

 

 

 

 

 

 

HAVE 1
Fatigue
Page 2
9. To Islet degree do you believe your fuily oders' illness or disease is
contributing or causing your fatigue?
lot at all A great deal
10. To uhat degree do you believe your f-ily “ers' Indical treatnnt is
contributing or causing your fatigue?
lot at all A great deal
11. To met degree do you believe your personal illness (or disease) is
contributing or causing your fatigue?
hot at all . A great deal
12. To mat degree do you believe your personal odical treatnnt is
contributing or causing your fatigue? .
hot at all A great deal
People uho are fatigued say try certain activities to redace the mount of
fatigue they are experiencing. For each of the following questions. place an
'1' through the line at the spot which best indicates the degree of
relief each activity has prov you in reducing the mount of fatigue you
have experienced today.
13. To what degree has sle. relieved your fatigue today?
No relief ' Conlete relief
14. To what degree have planned rest periods between activities relieved
your fatigue today?
No relief Cowlete relief
15. To mat degree has exercise relieved your fatigue today?
lo relief Cnletewelief
16. To uhat degree has distraction relieved your fatigue today?
In relief Owlete relief

 

17. To mat degree has lying down for short periods of tin (nnping)
relieved you today?

ho relief ' ‘ (inlets relief

10 1
30321.7.

5135
3337
3339’

1311’

1213'

1115

131'!

5651'

9O

IAN! 1 10 1
Fatigue Cafiffi]!!!
Page 3

18. Overall. when you experienced fatigue today. the best thing you found which
relieved your fatigue was:

 

 

 

19. Overall. what do you believe is eost directly contributing to or causing
your fatigue?

 

 

dls
2c:11

3/16/33 I

91

APPENDIX C

92

om _
MthmmmMaWwflchmbewbm
maaammmwhmamu‘rmammr
shongephoethhemwaihbumwhichbe‘hdmthedegmbwhichm
athbeuflvityoeheflnglocmpbAfmueflylibbdeeplahhlhe
mflmmeflfieMMm-fihm

1. bwhatdegseedoyoeueenylihbdeeplatehtbem?

Notdall ”+an

mmwmmm Kyuooefloelyeleepleiehthe-ouhgsoo
Setudayadfiendemaldyoewenabdtheioflowbgmmmm

 

2. Howheqodyaseyoeeflebdeephthemdnmgeeohweehhohdm
we“?

“M on.

 

m was no no: no Icon: ne mourns omxmm.
' was You:

Copyright] Selected fro mo
Barbara Piper. Revised 319/87.

93

um I - 10 A" 1-4

Carr 2- " I: ' 5-7

om - fJ__ 8-13

m 14.15

rmee 5mm sou: m roi- 1, 16
all! an um um Study 1 17

For each of the following questions. place an '1' throujl the line at the
g; spot nich m describes the fatigue are experiencing now. If
you are m experiencing fatigue. descri met you experienced m.

1. To mt degree are you experiencing fatigue now?

 

 

Io fatigue A great deal
of fatigue 1'3 1'9
2. How severe is the fatigue mich you are experiencing now?
In fatigue A great deal
of fatigue 20' 21'

3. How long have you been feeling fatigue?
0m looks 22 23

4. How would you describe the fatigue uhich you to feeling now?
Interlittait Continuous 21 I!

5. To diet degree has your fatigue changed in the past'uek?

 

Deceased Increased 2327
for each of the following questions. place an ‘1‘ thrwgi the line at
the :53 spot which indicates the degree of distress or interference

you are experiencing n 's activities as a result of your fatigue.

6. ls the degree of fatigue you are feeling causing you distress?

lo distress A great deal 2'! 2'9
_ of distress

7. Overall. how-ch is the fatigue mich you are experiencing now interfering
with your wility to engage in the kind of activities you endoydoing?

lone A great deal E 51'
8. How would you describe the degree of intensity or severity ofthe fatigue
Iiich you are exper'ieiicing now? . .
wild Severe 37 3'3

memmnpg.musnm

’ '

94

HAVE 1 ID 1
W3 I! Z Z

Fatigue

Page 2

9. To uwuat degree do you believe your faily oders' illness or disease is
contributing or causing your fatigue?

lot at all A great deal 333!
10. To duet degree do you believe your faily oners' .dical treetmt is
contributing or causing your fatigue?
lot at all A great deal 3'5 37
11. To duet degree do you believe your personal illness (or disease) is
contributing or causing your fatigue?
lot at all . A great deal '33 39'
12. To uduat degree do you believe your personal .dical treat-it is
contributing or causing your fatigue?
lot at all A great deal W 11'
People who are fatigued eay try certain activities to reduce the mount of
fatigue they are experiencing. For each of the following questions. place an
'2' through the line at the spot which best indicates the degree of
relief each activity has prov you in reducing the aunt of fatigue you
have experienced today.
13. To uduet degree has sle. relieved your fatigue today?
In relief ' Conlete relief 12 13'

14. To duet degree have planned rest periods between activities relieved
your fatigue today?

No relief Cowlete relief 11' 3'3

15. To duet degree has exercise relieved your fatigue today?
Io relief Cnletemelief 1'5 '47

16. To uduat degree has distraction relieved your fatigue today?
1 lo relief Onlete relief a I?
17. To iuuat deg'ee has lying down for short periods of ties (noping)
relieved you today?
lo relief ' . Conlete relief EU 31'

95

APPENDIX D

3‘99!"

96

APPENDIX D

My activities are centered around caring for

 

I have to stop in the middle of my work or activities to provide care.
I have eliminated things from my schedule since caring for

 

The constant interruptiom make it difficult to find time for relaxation.
Ivisit familyandfriendslesssincelhavebeencaring for

 

 

97

APPENDIX E

 

98

MGU! salmon SCALE: sesame om

DIRECTIONs:
Lachdthebnowhgmeddmmecuvltyorhdmwhichmberehudbm
fatigue.Ioreechdthenqoedoneyoowmbeeebdtoplaeean'rthsoogbaune.fhls1“
muwwmmmamuxmummmuwmm
mcpesiencingtheacuvityorbehng.hrmple.liyoummuhtoebephulnthe
nonbgsmndyouwereaehdtheblbwtogqudommmm

1. Towhatdegteedoyouunanyllbtoeleepleteinthenom?

Noieuell ML_+Agreeideel

Anothereeanplewouldlncludelhelollowtng: Hmcooldoolyslespleielnihenonlogsoo
SetordayendSundey,andyouwouubdlhebflowlngqoeeuoo.youni¢htm

 

2. Howhoqo-nlyenyooabhtodeeplnlhemdomeeehweehlnohdhg
weekends? _ '
Seldom _x 152221;; Often

-Pege l-

99

mcnmmnrscxm mom

80mm anal-3345
DAT! / /

TM NOW /
(flour) Mat-I)

 

 

Foreachdlheiolbwtngqouhou.plweu‘!'lhmughlhehmdlhemflspotwhdchbefl
deecribesyourooulpetternoflaugoe. .
1. Whendurlngthenomtngareyoumoetllhlytoexpedeocelaflgoe?

 

 

 

 

 

 

 

 

1A.“. 12Noon
2. Wheodusiogtheehemeeueveuogeeyounodllblytoeepesiencehugoe?
11K. 12)“:qu
3. Hombeqoeotlydoyooosoenycpeei-oehugee?
Seldom Often
4. Kowloegdoyooosoellyeeperieoeelatigoe?
Minutes Hours
5. Days Weeks
8. Howwouldyoudescribeyooxusoalpetternoflatigoe?
Intermittent Continuous
7. Acute ’ Chronic
8. ballad Generollnd
(Toeapeethcmuscleqmup/mty) (Wholebodyistotiqued)
9. ‘bwhatdegreehuyooruoalpafienoihflgueehangeddonngthepeldxmths?
Decreased Increased

 

Foreechoitheloflowingqueauons,plaeeen'X'lhroogheechlineellhemctspolwhlchbeet
mmmdqmolmormmuuflymmmdaflyacdvifiuua
reanlloiyourtetiqoe.
10. Thedegreeoddmreuyoousoanycperleneelnyonrdeflyacuvluuuar-ohoiyou
(aliquots:
NoDlstr. Agreetdeeloidistxees
11. Hownochdoathehuoueyouumnywwrewithmahtmytoclunyou
house? '
None » Aqxeetdeal
12. Hownochdoutheladgueyouusoeflycpesleoeeintederewilhyourabimytocookies
yourself?
None Agreeldeel
3.9.2.

 

13.

14.

15.

16.

17.

18.

19'.

21.

”l3

.313

100

Hownnchdoesthelatigueyonusnallycperienceintederewithyonrebilltytohatheor

 

washyeoeself?
None Aquatdeal
Hownnchdoolhehdgumnmflywmwnhmabflnyloned?
None Agreeldeal

 

Hownnchdoesthelaugueyonnnanycpedenoelnledenwnhyouabflltytodre-
yourself?

None Agreatdeal
Howmnchdoathehdqneyonumnywmwithmrahimybeonplde
yonrworkorachoolectivitles?

None ' Agsealdeal
Howanchdoutheladguyonnmflyupedencelntedenwithyourabtmytovmtor
sodallsevrttluyonrfrlends?

None Agreatdeal
flownnchdoulhehdgneyonnnanywmwflhmahlmybugegeln
sexualaetivity?

None Agreatdeal
Omalhownuchdoutheiauguyounnallymnelnbdmwithyonrabihtyto
engagelnlhehndoiactivitleuyoneniaydolng?

 

 

 

 

 

 

 

None Agreatdeal
Ovesan.howwonldyondueeibethelnhnniyoreeventydthehfl¢oemmfly
W?

Mild Severe
Towhetdegreewonldyondescrtbethelaugneyonnsnallyexperleneeubeing:

Pleasant Unpleasant
Agreeable Disagreeahle
Protective _ Destructive

Positive Negative

Nomal Abnormal

To‘whatdegreedoyonbehenfllnasordiseuenmflycontrlbotuloorcansuyou
fatigue? '

Notatall Agreetdeel

 

'bwhaldegleedoyoobdlevenedicdueaunentnmnyeonmbututooroausuyous
fatigue?
Notatall Agreetdeal

-Page 3-

 

31.

35.

37.

101

‘lbwhndegleedoyoubdhnthehchdadeqoabdespnsnanyeonmhututoorcauus
yonrlaligee?

 

 

 

 

 

 

 

 

 

Notatall Agrealdeal
‘bwhudegmdoyonbdmthehckotedeqnatennmnyeonmbuhstoorcamyour
fatigue? ’

Notetall Agreetdeal
Towhudegnedoyoubeueuthehckoimomflyconmbntsstoorcamyonr
fatigue?

Notatall Agreatdeal
bwhatdegmdoyoubeflenbomnchnoinnnanyeonmbnhstoosunauyonrhugue?

Notatall Agreatdeal
bwhatdegnedoyonbdhntoonnohuockuaaflyoontubntutoocoansuyonshugne?

Notetell Agrealdeal

. 'bwhndqmdomnhhm' monochauuumnyeambnlestoosoansesyonrlaugue?

Netatall Agreatdeal
bwhudegmdoyoubdmmmmmnymboscammhflgu?

Notatall Agreatdeal
Towhudegreedoyoohdmdepseenonnnanyeonmbntuboscaosuyonrladgne?

Notetall Agreatdeal
bwhatdegreedoyoobdmtoonncheuseiseuoanyoontubntastooreaosuyonr
laticne?

Notatall Agreatdeal
hwhfideqmdoyoubehueufingbonnchnnaflyeonmbumtoorcamyonrhfigue?

Notetall Agreetdeal

 

Omalwhudoyonbehuemoddbecfiyennmbututooscensutheladgneyounmny
matinee?

 

 

 

 

 

-Page 4.

102

Peopleieelingiaflqnedneyeapesieneecertainieelingawhichindicatetothemthattheym
Wheeachdlhebnowlngqnedons.pheeu‘rthmghthehneatlhemw
whichhdlndieu-thedegmbwhichuohbdlnggenuanyhupedenoedbyyonwhuyou
arelatigned.

39.

40.

41.

43.

47.

49.

51.

Whenlenlatiqned.1nsnallyieel:
Refreshed

 

WhenlaniatignedJonallyleel:
Strong

 

Whimhtigoedflunallyieel:
hush

 

WhaluhtignedJnsoallybel:
“'01!

 

WhalmhflMInsuallybel:
Alert

 

WhenlanlaliquedJusnallyieelz.

Reheslued

 

Whaleshdgoedlnsoallyieel:
Energetic

 

Whenlanlatiqned.1nsnellyieel:
Vigorous

 

WhalmhflMlusnallyieel:
banned

 

Whenlanuiatiqued.1nsuallyleel:
Calm

 

Whalmhflgneilnnallyieel:
Patient

 

WhenIantatiquedJusnallyieel:
Motiveted

 

Whenlaniatigned.1nsnallyieelz

 

Ham
Whenlalniatiqnedflnsnallyleel:
Roland

 

-Page 5-

mm;

C:

nenesgetic

teeth

”5.
w

FE

g:

103

WhenlaniatignedJnsoallyieel:
unleaded
WbanlaniatigeedJe-allyieel:
Ableto

 

Coneairate

WhenleniatiqnedJnsnallyieel:
Ableto

 

amber

Whenlanuiatigned.1nnallyieel:
Ableto

 

Thinkcleady

Antimotberieelinmtbotyoueaperlenoewhenyouoreiodqued?

(llNo D
(2)700 Pleasechsa-ibe

Unable to
Concentrate

Unableto

Unableto
Think clearly

 

Whenpeophbdiedgnedtbqahonayupuhnoeotberngnsoraynpbns.3oruchoithe
ionowingnguendmptonsmheean'rthronghtbeflneattbeunaapotwhiebbd
indicatutbedegmtowhicbeacbngnormpmucpeneneedwbenyouueiaugned.

61.

WhenlanitatignedJuanallyaniin

 

 

 

 

 

 

 

 

Nopain ' Severepain
WbuluhnMInnanybeveabeadeobe.
NoHeadecbe SevereHeadecbe
Whaluhtignedflusoallyanunenseatedhioktomydoueob).
NoNensee SevereNausea
Whenlantatiqned.1usoallyvonuit(tbrownp).
Novosniting Severevoniting
Whenlainiatiqned.1usnallybaveeyestrain.
Noeyeetrain Severeeyestrain
Whenlaniaiigned.1usuallyanuoonstipeted (bard, lnirequentbowelmovements).
No Severe
Constipation Constipation
Whenlaniatigned,1nsnanybavedianbee(looee,irequentbowelmovemenu).
Nodiarrbee' Severediasrbee
Malamlosnanyhaveebortnmotbreatb.
Noabortnees \ Severealuortnees
otbreetb otbreatb

-Page 6-'

104

66. Whale-Winnallyhevediflicnltyinbreatbing.
Nodiiiieely Severediiflonlty
67. Whole-Minnellyanoonghing.
Noeongbing Severeeonghing
68. WhenlalniatignedJnsnallybaveaiever.
Noiever Severeiever
69- Doyouexpssieneeenyotheraymptomswhenyoueretotiqued?
(1)No D
(ZlYuDPleasedesa-lbe

Peoplewhoanhflgneduaybyoutainaofiviuubrednostbeamntoflaugnetqu
mung.7orucbdtbeblbwbgqoedionnphoen‘rtbmgbtbehneutbeeuaapd
umwmmmdwmmmuymmmmmm
anonntoitaiigne.

 

70. ‘l'owbatdegreedoeseleepnenallyrelieveyonriatigne?

 

 

 

 

 

Noreliet Conpletereliei
71. nwwmummmmmmmmmom

Norelid Canister“
72. Towhatdegreedoeseaercisensnallyrelieveyonrtatigne?

Noreliei Conpletereliet
73. Towbatdeoreedoesdilrectionnanallyrelieveyonriatiqne?

Noreliet Coupletereliet
74. Towbatdegreedoeeeaiingnsnallyrelieveyoeriatigoe?

Norelid Coupletereliei
75. bwhatdegrudoolyingdowniorahonpaiodsdunuupptnghsndlyrehenyonr

iatiqne?
Noreliei Conpletereliei

 

76. Caramwbuyoncpeuencetauqnefibebenibingyoucandotonhenmrtaugneh:

 

 

77. Towbatdegreeareyonelperiencingiatiguenow? ‘
Notations Agreatdealotiatigne

 

73. Howeeveeeistbeiaiigoewhicbyonaxecpeciucingnow?
Noiatigne Worettatigneever

 

Manned .

-Page 7-

105

79. Howwouldywdeeu-lbeyourcunentiotique?
W W
(‘roameeiiienalelegroup/mity) (Wholebodyisietigued)
ao. hdueuytbingduyoumldhhtooddthetwoulddesadbemteflquebettutoua?

 

 

81. ThnutbelonquauonnewoulduhbukmDotbewuds‘und'end‘iouqued'meontbe
amstoyouordoduyhewdifl-entmeanmgflfihueuenodghtorwmgww
mmnnmplyaddtoourundunandinqebaniomeapeflenoalmm

 

 

Olfltlarberell’lper
Bern-dam

4.9.3..

106

 

 

 

 

 

 

nu

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NNNNNDJNNNNNNNNNNNNNNNNNNNNNNNN
uuuuuuuuuuuuuuuuuuuuuuuuuuuuuu

fififlflfiflflfififlfiB.
?
8'
E

Wh mucomsrmmmm

Snbiecthniber:
Medicalleoostn-bea:

107

 

 

Detectlntry: I I

SECTIONS: roucommarmsum

(sue-n) (TD-y) En)

nmNow

l
(8m) (mus-l

'E

l

2345

Fumbdtbeblbvingqoedionsyonwtflbeeshdbdtbal)flnhtbeblankor2)plaoea
checkurk(w)htbeappropflabapennfaucbqnedon.phansdedtbeoubdreaponn

1.

2.

Birthdate: Ir/_
(“lanolin-u)

Maureen:

 

-Page 1-

108

APPENDIX F

109

MICHIGAN STATE UNIVERSITY

 

mmmmmm
WW ° mm Owe-u"
mmnx.
fin“
mom-om

Deonmberfim moses-ea

SusanJenssn
846W.ThomasLPrkvvey

Lansing.“ 4&1?
DetAInJensen:

RE: “THE REIA'HONSHIP BETWEEN FATIGUE IN THE CAREGIVER OF THE
CANCER PAflENTANDCAREGNERCHNMCTERISTICSANDPROCESS
OF CARE IR" ao-ozz'

lheeboveproisetisexomptfromhulUCl-‘liliSrevlew. lhaverevlswedthspropossd
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