Measuring Quality of Palliative Care: Psychometric Properties of the FAMCARE Scale

Author(s): Gerd Inger Ringdal, Marit S. Jordhøy , Stein Kaasa

Source: Quality of Life Research, Vol. 12, No. 2 (Mar., 2003), pp. 167-176
Published by: Springer
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h Quality of Life Research 12: 167-176,2003. 167
l t 2003 Kluwer Academic Publishers. Printed in the Netherlands.

Measuringqualityof palliativecare: Psychometricproperties

of the FAMCAREScale*

Gerd Inger Ringdal,' Marit S. Jordh0y2& Stein Kaasa2'3

'Department of Psychology (E-mail. gerd.inger.ringdal@svt.ntnu.no);2Unit of Applied Clinical Research,
Norwegian University of Science and Technology (NTNU); 3Palliative Medicine Unit, Department of
Oncology and Radiotherapy, University Hospital of Trondheim, Trondheim,Norway

Accepted in revised form 12 June 2002

Abstract

This study measuresquality of palliativecare in 181 familymembers(i.e. spouse, child) to cancervictims

with terminaldisease1 month afterthe time of death.The specificaim was to explorethe underlyingfactor
structureand dimensionalityof the 20 items of the FAMCARE Scale,measuringfamilysatisfactionwith
healthcaregivento the patientand to them.The resultsfrom a factoranalysis,a MokkenScalingProgram
analysis,and a reliabilityanalysis,showedthat 19 out of the 20 itemsform a strongone-dimensionalscale.
Since the scale is one-dimensional,the possibilityof reducingthe numberof items should be exploredin
futureresearch.Ourrecommendationis to measuresatisfactionwith care 1-2 monthsafterthe deathof the
patient. One should also explore the possibilitiesof measuringsatisfactionwith care prospectivelyas an
integralpart of the palliativecare program.

Key words:Dimensionality,Family satisfaction,Psychometricproperties,Quality of palliativecare, The

FAMCARE Scale

Introduction care. To providecare that promotesfamily satis-

Literaturerelatedto the quality of palliativecare
reveals an increasingemphasis upon the impor-
tance of care satisfactionjudgements made by
patients and their family [1-3]. Usually the con-
stant sourceof supportto the patientis the family,
althoughthe degreeof involvementof familiesin
the patient's care experience varies [I, 4, 5].
Families are facing an imminent loss and may
experienceanticipatorygrief [6, 7] and as partici-
pants and observersof patients' care they often
encounter a myriad of stressors [1, 8-15]. One
source of stressors may be dissatisfactionwith
* The study was approved by the Ethical Review Committee
in Medical Research, Norwegian University of Science and
Technology (NTNU), Trondheim, Norway.
faction and minimizesthis potentialburden,it is
thereforeessential to measurefamily satisfaction
with care.
Research related to family satisfaction with
palliativecare in particularis limited.Satisfaction
with care has been defined as the evaluation of
distinct health care servicesreceivedby both the
patientand the family [16, 17].Evaluationstudies
[18, 19] of patient and family satisfaction with
terminalcare have shown that patients reported
higherlevels of satisfactionthan familymembers,
and that the family membersmay have different
care prioritiesor perceptionsthan patients. Ear-
lier findings [9, 20-22] revealedthat families are
generally satisfied with the care provided, parti-
cularly in relation to the physical care needs of
the patient.
 168
-The present study examines satisfaction with
palliativecare on the part of familymembersclose
to patientswho have died of cancer.We used the
FAMCAREScale [1], which is one among several
instrumentsused in measuringthe families'satis-
faction with palliative care for cancer patients
[9, 20, 23-33].
Although it is often unclearwhetherthe mea-
sures are based on separate dimensions or not,
researchers[1, 5, 24, 32, 34-37] have categorized
satisfactionwith respectto severalaspectsof care:
general satisfaction,informationgiving, commu-
nication with health professionals,technicalcare,
inclusionof the familyin care,pain relief,physical
patientcare,psychosocialcare,availabilityof care,
and continuityof care. The literatureis, however,
limited in conceptualizingpossible dimensionsof
care satisfaction due to inconsistent or poorly
specifiedtheoreticaldefinitionsof the constructof
satisfactionwith care. There is also an absenceof
empirical testing of the dimensionalityof the
construct. Thus, the literaturereveals no agree-
ment in terms of multiple vs. single item instru-
ments,and whetherthe satisfactionis conceivedas
one- or multidimensional.
The FAMCARE Scale [1] was developed to
measurethe degreeto which family membersare
satisfiedwith the health care receivedby both the
patientand the familywith respectto the following
four components of care: information giving,
availabilityof care, psychologicalcare and physi-
cal patient care. In two later studies the results
froma factoranalysis[17]and a reliabilityanalysis
[38] were reported. The results indicated that a
one-dimensional FAMCARE Scale might be
formed from the 20 items with satisfactoryreli-
ability.
Very few other publishedstudieshave used the
FAMCARE Scale. One that has is an evaluation
studyof a palliativecare program[39].In a review
[40] of instrumentsassessing the cancer patients'
and their families'needs for care, it was pointed
out that none of the reviewed instrumentswas
completefor all componentsof palliativecare and
that their feasibilitywas poorly documented.This
shows the need for further research.The main
purposeof this paper is, therefore,to explore the
underlying factor structure and dimensionality
of the 20 items of the FAMCARE Scale in a
Norwegiansample.
Methods
Study design
The sample comprisedfamily membersclose to
patients with advanced cancer who had partici-
pated in a cluster-randomizedtrial of palliative
care conducted at the Palliative Medicine Unit
(PMU), University Hospital of Trondheim.The
design has been thoroughly describedelsewhere
[7, 41, 42]. The main criteriafor inclusion in the
study were the presence of incurablemalignant
disease, age above 18 years and a predictedsur-
vival of 2-9 months.At the time of trial entry,the
patients were asked to name their closest family
member. With the patients' consent, 426 close
family members were approachedand asked if
they were willing to participatein a study con-
cerningthe healthrelatedqualityof life (HRQoL)
and their personal feelings. In total 312 were
willingto participateand receiveda questionnaires
every second month. When the patient died, a
letter of condolencewas sent to the family mem-
ber, thanking him/her for participation in the
study and asking if he/she would be willing to
continue by answering HRQoL questionnaires
and questions concerning grief and satisfaction
with care. A total of 279 close family members
consented and did receive additional question-
naires.If the questionnaireswere not returnedaf-
ter 2 weeks, a reminderwas given, and if still no
answerwas received,the close familymemberwas
regardedas having droppedout and receivedno
furtherquestionnaires.The firstquestionnairewas
completedby 183 family members,113 in the in-
terventionand 70 in the control group. The total
responserate as a percentageof those who were
sent questionnaireswas 66%. The separate re-
sponse rates for the interventionand the control
groupswere 68 and 63%.
Sample characteristics
The main demographicand clinicalcharacteristics
of the sampleare displayedin Table 1. The sample
included 181 close family members,of those the
majority (68%) were women, aged 22-83 years,
with a median age of 56 years. About half of the
respondents(57%) were under 60 years of age.
The majority(64%)were spouses,and about one-
 169

Table1. Sample characteristicsof the close family members utilizes a five-point Likert scale ranging from 1,
(respondents)and the patients, absolute frequencies and very satisfied;2, satisfied;3, undecided;4, dissa-
percentages (n = 181)*
tisfied;and 5, very dissatisfied.
Respondents Patients
Statistical analysis
Age median(range) 56.4 (22-83) 68 (42-93)
N % N % The questionnairesof the 181 respondentscon-
Gender tained only a total of 39 missingvalues for all 20
Male 57 31.7 94 52.2 items. Most frequently,questionnairescontained
Female 123 68.3 86 47.8 only one or two missing values. Only two items
Relationto patient had more than 10 missing values:item 5 with 14
Spouse 114 63.7 - - (8%) and item 15 with 12 (7%). A missingvalue
Parent 1 0.6 - -
Child 58 32.0 - -
analysisby means of the missingvalue module in
Sibling 3 1.7 - - SPSS 10.0 showed a non-significantvalue of
Friend 3 1.7 - - Little's MCAR test (X2= 431, df= 458, p =
Childrenlivinghome 0.008),i.e. this indicatesthat the missingvaluesare
Yes 58 32.4 - -
completelyrandom.The missingvalueswere then
No 121 67.6 - -
Education estimatedusing the EM-algorithm.
,<7 32 17.9 64 35.6 To examine the dimensionalityof the FAM-
8-10 64 35.8 65 36.1 CARE items we performedboth a factor analysis
11-12 42 23.5 21 11.7 and an analysis using Mokken's non-parametric
< 13 41 22.9 30 16.7 IRT model.Oursamplesize of 181is just adequate
Work
Does not work 90 50.3 - -
to performa factoranalysis.As a ruleof thumb,it
Part time 20 11.2 - is recommendedthat the sample size is about 10
Full time 69 38.5 - - times the numberof items, i.e. 200 for 20 items.
Cancerorigin The computerprogramSPSSwas used to perform
Gastrointestine - - 84 46.7 a factor analysis. The extraction method was
Lung - - 25 13.9
Breast/female genitals - - 20 11.1
principalcomponent factoring with Kaiser'scri-
Prostate - - 16 8.9 terion. The initial solution was rotated (varimax
Others - - 35 19.4 with Kaiser normalization).The correlationbe-
Placeof death tween the factors and the items are indicatedby
At hospital - - 118 65.6
- -
the factor loadings, and the communalities(h2)
In nursing home 22 12.2
At home - - 40 22.2
show the proportionof the variancein each item
that is explainedby the factors.
* n = 181, i.e. all respondentswith valid values for the
A reliabilityanalysis of the FAMCARE Scale
FAMCAREScale.At most two respondentsor patientshave was performedusing the scale proceduresin SPSS
missingvaluesfor the demographicvariablesin this table. 10.0.
To furtherexaminethe psychometricproperties
third (32%) were childrenof the cancer victims. of the FAMCARE Scale, Mokken's non-para-
Only seven of the respondentswereparents(1%), metric latent trait model for one-dimensional
siblings(2%)or friends(2%) of the cancervictims. scaling was used [43, 44]. Central in the item
analysis is Loevinger'sH-coefficientof homoge-
The questionnaire neity or scalability.For each pair of items, it is
defined as Hgh = 1 - (Fgh/Egh), where Fgh is the
A questionnairewas mailedto the home addressof sum of observederrorsaccordingto the Guttman
each respondent.It includedquestionsabout how scale model, and Egh is the expected numberof
satisfiedclose family memberswere with the ad- errors from the statistical independencemodel.
vanced cancercare provided,as measuredby the The scalabilityof a single item with respectto the
FAMCARE Scale [1, 17, 38] 1 month after the other items in the scale is definedby Hg and the
time of death. The 20-item FAMCARE Scale scalability of the total scale is measuredby H.
170

Molenaar et al. [44] introducedthe weighted H-
coefficient,Hwgt,the defaultin the currentversion
of the Mokken scalingprogram(MSP), the com-
puter programused to evaluate the FAMCARE
Scale. High H-coefficientsindicate good chances
that the assumptionsof a Mokken scale are satis-
fied.A set of itemsconstitutesa scale if all Hghare
greaterthan zero and if every item coefficientof
scalability,Hg, is largerthan a constantc, set to at
least 0.30. All Hg and the H should be significan-
tly greaterthan zero accordingto a given level of
significance. The total scale should have an
H-value of at least 0.30 to form a weak scale.
H-values between 0.40 and 0.50 indicate average
scales,and valuesabove0.50 indicatestrongscales.
The MSP may be used to test predefinedscales
or search for scales in a set of items. The search
option is a bottom-up procedure and starts by
finding the two most homogeneous items, i.e.
which give the highestH-statisticwith H = 0.3 as
the minimumacceptable.Each item statistic, Hj,
also has to be at least 0.3. Then the pair is ex-
pandedwith the item that maximizesthe H-value
for a scale of three items. This process continues
until all items with Hj > 0.3 are included.
The FAMCARE items are scored so that high
values indicate low satisfaction with the care
component(see footnote a in Table 2). To make
the FAMCARE Scale easier to interpret, we
wanted high scores to indicatehigh levels of sat-
isfaction, and the scale scores to vary between0
and 100. The following SPSS command creates
our 19 item FAMCARE Scale (item 14 was ex-
cludeddue to reasonsreportedin Table 5):
compute famcare
= 100- (((sum(item I to item 13, item 15 to item 20))
- 19)/64) x 100).
First, the sum of the 19 items were computed.
From this, the minimumobservedsum of 19 was
deductedand the resultdividedby 64, the rangeof
the observed sum scores (83-19). To make the

Table 2. The FAMCARE items and descriptive statistics, n = 181

No. Itemsa % Satisfied' % Dissatisfiedd

Mean Std.b 1 +2 1 4+ 5 5

1 The patient's pain relief 2.06 1.03 74.6 33.2 9.3 3.9
2 Information provided about the patient's prognosis 2.51 1.22 55.8 23.2 23.2 7.7
3 Answers from health professionals 2.11 1.02 68.5 32.6 9.9 2.2
4 Information given about side effects 2.72 1.23 47.5 16.6 23.8 12.7
5 Referrals to specialists 2.45 1.16 61.9 18.8 16.6 8.8
6 Availability of a hospital bed 1.91 1.19 81.8 48.1 13.8 6.6
7 Family conferences held to discuss the patient's illness 2.55 1.29 56.9 22.7 22.7 12.7
8 Speed with which symptoms are treated 2.47 1.22 62.4 21.0 20.0 10.5
9 Doctor's attention to patient's description of symptoms 2.05 1.06 73.5 35.4 9.4 4.4
10 The way tests and treatments are performed 2.07 1.00 72.9 32.6 9.9 2.2
11 Availability of doctors to the family 2.31 1.28 65.2 32.0 19.3 9.4
12 Availability of nurses to the family 1.68 0.86 84.5 51.9 2.7 1.7
13 Coordination of care 1.99 1.03 74.6 38.1 9.3 2.8
14 Time required to make a diagnosis 3.09 1.34 39.8 11.6 38.1 22.7
15 The way the family is included in treatments and care decisions 2.30 1.12 66.3 24.3 14.9 6.1
16 Information given about how to manage the patient's pain 2.48 1.22 59.7 22.1 20.0 10.0
17 Information given about the patient's tests 2.51 1.25 59.1 22.1 22.1 10.5
18 How thoroughly the doctor assesses the patient's symptoms 2.39 1.09 59.7 22.1 17.1 3.9
19 The way tests and treatments are followed up by the doctor 2.24 1.06 66.3 26.0 12.2 4.4
20 Availability of the doctor to the patient 2.15 1.07 68.5 31.5 11.6 3.9
a The response categories are: 1. Very satisfied, 2. Satisfied, 3. Undecided, 4. Dissatisfied, or 5. Very-dissatisfied.
b
Std.: standard deviation.
c 1 + 2: Includes the two highest response categories: very satisfied and satisfied, while 1 includes the
highest response category: very
satisfied.
d 4 + 5: Includes the two lowest response categories: very dissatisfied and dissatisfied, while 5 include the lowest category: very
dissatisfied.

scale vary from 0 to 100, the resultwas multiplied
by 100. The final operation, deductingthe scale
score from 100, reversesthe scale, so that high
values mean high satisfactionwith care.
Results
Satisfaction with care based on single items
We startedby examiningthe results for separate
items.Table 2 gives an overviewof the 20 itemsin
the FAMCARE Scale and descriptivestatistics.
Low item values indicate high satisfaction with
care.Most of the respondentsreportedto be either
'very satisfied'(value 1) or 'satisfied'(value 2) on
most of the 20 items. The following items:
'Availabilityof nurses to the family' (item 12),
'Availabilityof a hospital bed' (item 6), 'Coordi-
nation of care' (item 13), 'Doctor's attention to
patient's descriptionof symptoms'(item 9), and
'The patient's pain relief' (item 1) indicated the
highest satisfaction with care (i.e. mean scores
from 1.67 to 2.06). As many as half of the re-
spondentsreportedto be 'very satisfied'with the
'Availability of nurses to the family' and the
'Availabilityof a hospitalbed'. On the otherhand,
the items: 'Time requiredto make a diagnosis'
(item 14), 'Informationgiven about side effects'
(item4), 'Informationprovidedabout the patient's
prognosis'(item 2), and "Informationgiven about
the patient'stests" (item 17) indicatedthe lowest
satisfactionwith care (i.e. mean scores from 3.09
to 2.51). However,only a few of the respondents
(7.7-12.7%) reportedthat they were 'very dissat-
isfied'with respectto these items, except for item
14 with 22.7% 'verydissatisfied'.
Dimensionality - factor analysis
To explore the dimensionality of the 20
FAMCARE items we performeda factor analysis
and comparedour resultsto those from Kristjan-
son's [1] study. The factor analysisin the Norwe-
gian sampleresultedin one very strongfactorwith
an eigenvalueof 10.95,and two weak factorswith
eigenvalues of 1.52 and 1.22. If item 14 were
eliminated, the remainingitems would all have
their highestfactor loadings on the first factor in
the initial factor solution, i.e. before rotation.
171
Removing item 14 reducesthe eigenvalueof the
weakestfactor from 1.22 to 1.08.
Since a factor analysis does not estimate the
numberof factors, the conclusionon the dimen-
sionality will always be somewhat subjective.In
this case the strong first factor may be taken as
an indicationof one-dimensionality,but the two
factorswith eigenvaluesabove 1.0 may give some
reasonsfor doubt (Table 3).
To further explore the possibility of multidi-
mensionalitywecomparedthefactorsolutionin our
study with Kristjanson's[1] conceptualstructure,
and her somewhatdifferentempiricalstructure.In
Table 4 the itemsare classifiedaccordingto Krist-
janson's [1] four-dimensionalconceptualstructure
and the threefactorsin our Norwegiandata.
Our first factor may be labelled 'Generalcare'
and crosscuts all four conceptual dimensionsin
Kristjanson's[1] study. Four of her information
items loaded stronglyon our secondfactor, which
we have labelled'Information',but it also picked
up strongloadingsfrom items in her psychosocial
and physical care dimensions.Our third factor,
'Physical care', picked up three items of her
physicalcare dimension,but also one item on in-
formation giving and one on care availability
loaded stronglyon this factor.
The most reasonableinterpretationof the factor
analysisis that the FAMCAREitems tap a single
underlying dimension. This is indicated in the
large differencein eigenvaluesbetween the first
and the two remainingfactors in the initial solu-
tion. If the two weakfactorsactuallyrepresenttwo
additionaldimensions,the factor structurein the
Norwegiandata does not easily conformto either
Kristjanson's [1] conceptual structure for the
FAMCARE items or to her somewhat different
empiricalstructure.
Using the MSP to searchfor scales
The MSP may be used to test predefinedscales or
searchfor scales in a set of items. Becauseof the
lack of consistencybetween conceptualstructure
and the factor analysis, the search option was
used. The results from the MSP analysis are
reportedin Table 5 along with the resultsfrom a
reliabilityanalysisof the scale. The resultingscale
consistsof all itemsbut item 14:'Timerequiredto
make a diagnosis',that was excludeddue to a too
172

Table 3. A factor analysis of the FAMCARE items with factor loadings and communalities, n = 181*

No. Items Fl" Fl F2 F3 h2

20 Availability of the doctor to the patient 0.79 0.85 0.81

19 The way tests and treatments are followed up by the doctor 0.80 0.83 0.34 0.83
11 Availability of doctors to the family 0.73 0.71 0.39 0.66
18 How thoroughly the doctor assesses the patient's symptoms 0.80 0.71 0.44 0.75
17 Information given about the patient's tests 0.82 0.70 0.49 0.74
15 The way the family is included in treatments and care decisions 0.78 0.67 0.37 0.65
13 Coordination of care 0.69 0.63 0.53
12 Availability of nurses to the family 0.70 0.61 0.48 0.61
10 The way tests and treatments are performed 0.78 0.58 0.37 0.40 0.63
3 Answers from health professionals 0.77 0.84 0.80
2 Information provided about the patient's prognosis 0.78 0.36 0.76 0.73
9 Doctor's attention to patient's description of symptoms 0.77 0.31 0.72 0.70
4 Information given about side effects 0.79 0.39 0.67 0.68
7 Family conferences held to discuss the patient's illness 0.77 0.46 0.65 0.65
16 Information given about how to manage the patient's pain 0.83 0.59 0.60 0.73
14 Time required to make a diagnosis 0.35 0.81 0.67
8 Speed with which symptoms are treated 0.72 0.39 0.71 0.73
5 Referrals to specialists 0.75 0.33 0.42 0.65 0.71
6 Availability of a hospital bed 0.65 0.48 0.56 0.58
1 The patient's pain relief 0.61 0.46 0.51 0.50

Eigenvalue, intial 10.95 1.52 1.22

Eigenvalue, rotation 5.71 4.89 3.10 13.70
Variance explained 68.5%

* Extraction method: principal component factoring with Kaiser's criterion, rotation: Varimax with Kaiser normalization. High factor
loadings (>0.60) are given bold.
Fl": factor loadings for the first factor in the initial (unrotated) solution.
Fl, F2, and F3: factor loadings for rotated solution.
h2: communalities, the proportion of the variance in each item which is explained by the factors.

Table 4. Cross-classification of the conceptual and empirical structures of the FAMCARE items

Factor structure in the Norwegian sample

Factor I (General care) Factor 2 (Information) Factor 3 (Physical care)

Kristjanson's conceptual structure

Information giving 16, 17 (1), 3, 4, 16 1
Availability of care 11, 12, 20 (6) 6
Physical care 10, 18, 19 2 5, 8, 14
Psychosocial care 13, 15 7, 9
Kristjanson's empirical structure
Information giving 10, 13, 15 (1), 3, 4, 16 1
Availability of care 11, 12, 20 (6)
Physical care 17, 18, 19 9, 8, 14
Pain control 16 2, 7
No scale items 5, 6

low coefficient of homogeneity (Hwgt= 0.27). The The FAMCARE Scale was initially computed as
19-item scale is a strong one both in terms of the sum of the scores on the 19 items, rescaled to
scalability (Hwgt= 0.59), and the reliability of the vary between 0 and 100 and reversed so that low
scale (Cronbach'sa = 0.96). scores on the FAMCARE Scale indicate low levels
 173

Table5. Scalabilityand reliabilityanalysisof the FAMCAREitems, n - 181. The itemsare orderedby sampledifficulties(mean
values)

Item Label MSPa Reliabilityanalysisb

H,,,,gt Corr. R2

12 Availabilityof nurses 0.57 0.67 0.59

6 Availabilityof a hospitalbed 0.52 0.62 0.57
13 Coordinationof care 0.53 0.65 0.62
9 Doctor attentionto symptoms 0.61 0.74 0.71
1 The patientpain relief 0.47 0.57 0.47
10 Tests and treatmentare performed 0.60 0.74 0.67
3 Answersfromhealthprofessionals 0.60 0.74 0.75
20 Availabilityof doctorto patient 0.61 0.76 0.77
19 Testsand treatmentfolloweddoctor 0.62 0.77 0.79
15 Familyis includedin treatment 0.60 0.75 0.67
11 Availabilityof doctors 0.56 0.70 0.68
18 Doctor assessesthe symptoms 0.62 0.77 0.77
5 Referralsto specialists 0.58 0.71 0.64
8 Speedsymptomsare treated 0.55 0.68 0.65
16 Informationpain 0.64 0.80 0.77
17 Informationthe patienttests 0.63 0.79 0.76
2 Informationaboutthe prognosis 0.61 0.75 0.73
7 Familydiscussthe illness 0.60 0.74 0.60
4 Informationaboutside effects 0.62 0.76 0.71
FAMCARE The familycarescale 0.59 0.54 o 0.96
Excludeddue to lowerboundof H (<0.40)
Item14 Timerequiredto makea diagnosis 0.27
a
MSP- Mokkenscalingprogram.Mean:item means.Hwgt- Loevinger'scoefficientof homogeneity,weighted.All H-coefficientsare
significantlydifferentfromzero at the 0.001 level.
b Reliabilityanalysisby means of SPSS Reliability.Corr.:averageinter-itemcorrelationsfor the scale, and correcteditem - scale
correlationsfor the items.R2: for each item, its commonvariancewith the remainingitems. a: Cronbach'sa.

of satisfactionwith care and high scores indicate

high levels of satisfaction.The mean FAMCARE
scoreof 62.53reportedin Table 5 indicatesa rather
30%
high level of satisfactionwith care among the re-
spondentsin our sample.The distributionis nega- 4-.

10
tivelyskewed(skewness= -0.41, standarderror= C
0
0.18;kurtosis= -0.73, standarderror= 0.36).The 20%4)
shape of the distributionis betterseen in the his-
0
togramof the FAMCARE Scalein Figure 1. C ~ ~ ~

210%_
Discussion
0%
The high level of satisfactionwith care for dying
cancer patients reported by family members or
0 20 40 60 80 100
close friends in our study is in accordancewith
most studies of satisfaction with palliative care FAMCARE Scale
[1, 9, 18-20, 29, 32, 39]. In terms of single items, Figure 1. Distribution of the 19 item FAMCARE Scale (his-
whichmay be of clinicalinterest,we foundthat the togram). Descriptive statistics for the FAMCARE Scale: mean:
respondentsreportedhighest level of satisfaction 62.53; standard deviation: 25.24; scale range: 0-100.
174
with the followingitems:'Availabilityof nursesto
the family', 'Availability of a hospital bed',
'Coordinationof care', 'Doctor's attentionto pa-
tient's description of symptoms', and 'The pa-
tient'spain relief. On these itemsas muchas three
out of four reportedto be either'verysatisfied'or
'satisfied'.
The numberof respondentsdissatisfiedwith the
carecomponentswas low for most of the items.In
our study, only 3.9% of the respondentsreported
to be 'very dissatisfied'with 'The patient's pain
relief, whichmightbe seen in rathergreatcontrast
to anotherfinding[33]in whichhalf of the sample
of familymembersto cancervictimsreportedthat
the patient experienced'very distressing'pain at
some time in the last year of life. Furthermore,we
found that the items on informationabout side
effects,the patient'sprognosis,pain management,
the patient'stests, and the item on familyconfer-
ences to discussthe patient'sillness, indicatedthe
lowest satisfactionwith care, with about one of
four reporting'dissatisfied'or 'very dissatisfied'.
Complaintsabout poor informationand commu-
nication were also reportedin a national popula-
tion-basedinvestigationincludinga large sample
of family membersof dying cancer patients [33],
whereas many as half of the respondentsdid not
get all the informationthey wantedabout the pa-
tient'smedicalcondition.
Our findingof a strong one-dimensionalFAM-
CARE Scale (Hwgt= 0.59, Cronbach's ot= 0.96)
supports the conclusion in Kristjansonand her
colleagues'study[17].The largea is due to the high
numberof items and the strong inter-itemcorre-
lations. Thus, the MSP analysissupportsthe one-
dimensionalinterpretationof the factor analysis.
However, since their factor analysis results were
only sparselydescribedin the text, a moredetailed
comparisonof our findingwiththeirsis impossible.
In our study, item 14: 'Time requiredto make a
diagnosis',had to be excludedfromthe scaledue to
the results from both the factor analysis and the
MSP analysis.
There are several methodologicalproblems in
studyingsatisfactionwith care.One problemin the
evaluation is social desirability[45], i.e. the re-
spondentsare answeringin a way they think the
society expect them to answer, and they may be
concernedabout how the care may changeshould
they respondwith anythingbut praise.The finding
of high satisfactionthat we have seen our study
shares with many others may also be due to the
reluctanceof close family members or informal
caregiversto express negative perceptionsabout
care, because of their belief that nothing would
change as a result of complainingabout the ser-
vices. To enhance their self-esteem and also to
reducecognitivedissonance,family membersmay
also have retroactivelyinflatedtheir evaluationof
the servicesthat reflecton the wisdomof theirown
behaviouror judgementin choosing these services
[20]. Alternatively,high satisfactionmight be an
accuratereflectionof the qualityof the healthcare
they receive.
The high percentagesof 'satisfied' and 'very
satisfied'in our studyindicatepoor discrimination
at high levelsof satisfaction.The responsescale of
'very satisfied'to 'very dissatisfied'has also been
criticized in an earlier work [36]. Patients and
family membershave reporteddifferentsatisfac-
tion with medical care based on whetherthe re-
sponse scale was 'poor to excellent' or 'very
dissatisfied'to 'very satisfied',and Ware [37] re-
commendedthe use of the formerversion.
A third methodologicaldifficultydeals with a
retrospectivevs. a prospectiveapproach in col-
lectinginformationabout family satisfactionwith
care for the dying. Interpretationof the results
might be difficultdue to differencesbetween the
time period assessedprospectively,i.e. before the
death of the deceased [1, 9, 17-20, 38, 39] and
those assessedretrospectively,i.e. after the death
of the deceased [20, 29, 32, 33, 35, 46]. Small
samplesizes may also impactthe results[1, 17, 32,
35, 38, 39]. Retrospectivestudies have collected
data at quitedifferentpointsin time afterthe loved
ones' death. One seriousproblemwith the retro-
spectivedesign in satisfactionresearchis that the
problemswith recall and the subjectivitybias in-
crease along with the amount of time that has
elapsedfrom the death until the collection of the
data. On the other hand, the retrospectivedesign
makes it possible to have a representativesample
of all people who died, not just those who were
identifiedto be terminallyill or receivingpalliative
care services[33, 46]. When satisfactionis exam-
ined beforedeath the designis also retrospectiveif
there is a time period between the hospital-care
service received and the point in time for data
collection. Further, in prospective studies the

familymembers'responsesmay be colouredby the
imminentloss and anticipatorygrief[6, 7], whilein
the retrospectivestudies the survivors'responses
may be colouredby the bereavementand grieving,
particularlyin the firstmonths after the death. In
accordancewith theoreticalexpectationsand ear-
lier findings[7, 15, 47, 48], grief will diminishas a
function of time from death. That means, that in
retrospectivestudiesthe problemof recallwill in-
crease,while grievingseems to decreasewith time
from death of the loved one.
Due to the methodologicalproblems in mea-
suring satisfaction with palliative care, such as
social desirability,poor discriminationof levels of
satisfaction, and retrospectivelycollected infor-
mation, caution is needed in interpretingresults
from measures of satisfaction with family care.
Ourrecommendationfor retrospectivestudiesis to
measure satisfaction with care 1-2 months after
the death of the patient. One should also explore
the possibilitiesof measuringsatisfactionwithcare
prospectivelyas an integralpart of the palliative
care program.
In conclusion,our study indicatesthat a strong
one-dimensionalscale may be formedfrom 19 out
of the 20 FAMCAREitems. Sincethe scaleis one-
dimensional,the possibilityof reducingthe num-
ber of items should be exploredin futureresearch.
Acknowledgements
We are very gratefulto all the patientsand close
familymemberswho participatedin the studyand
willinglyfilledin the qualityof life questionnaires.
We wouldalso like to thankAnne LiseNessaether,
TorgeirFjermestad,Bj0rgPetersvik,Nina Hassel
and Fr0ydisH0yemKotengfor theirindispensable
participationin trialplanningand organizing.The
invaluableworkof the researchassistantsTorbj0rn
0vreness, Gro Underlandand Bj0rnFougnerand
data managersAnders Skjeggestadand Turi Salt-
nes is highly appreciated.We gratefullyacknowl-
edge ProfessorKristenRingdal,for his advicewith
regardto the statisticalanalysesand for his valu-
able commentsto the paper.We wouldalso like to
thank Associate ProfessorJenniferBailey for her
languagecorrections.The study was supportedby
grants from The Norwegian CancerSociety (no.
95147 and 98004), The Swedish Cancer Society
175
(grantno. 3650-B95-OIXAC) and The Norwegian
Medical Association Fund for Quality Improve-
ment (grantno. 4488/93).Contributors: GerdInger
Ringdal planned and conductedthe analyses,in-
terpretedthe results,and wrotethe paper.MaritS.
Jordhoycollaboratedin the conceptionand design
of the study, wrote the protocol, supervisedthe
data management,and participatedin the inter-
pretationof the resultsand all versionsof the pa-
per. Stein Kaasa conceivedthe idea of the study,
supervisedall partsof the trial,and collaboratedin
the interpretationof the resultsand all versionsof
the paper.
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Addressfor correspondence:Gerd Inger Ringdal, Department of
Psychology, Faculty of Social Sciences and Technology Man-
agement, NTNU, 7034 Trondheim, Norway
Phone: +47-73-591960/597486; Fax: +47-73-591920
E-mail: gerd.inger.ringdal(svt.ntnu.no