Aging & Mental Health

ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20

The COPE index--a first stage assessment of

negative impact, positive value and quality of
support of caregiving in informal carers of older
people

K. J. McKee , I. Philp , G. Lamura , C. Prouskas , B. Öberg , B. Krevers , L.

Spazzafumo , B. Bien , C. Parker , M. R. Nolan & K. Szczerbinska

To cite this article: K. J. McKee , I. Philp , G. Lamura , C. Prouskas , B. Öberg , B. Krevers , L.

Spazzafumo , B. Bien , C. Parker , M. R. Nolan & K. Szczerbinska (2003) The COPE index--
a first stage assessment of negative impact, positive value and quality of support of
caregiving in informal carers of older people, Aging & Mental Health, 7:1, 39-52, DOI:
10.1080/1360786021000006956

To link to this article: http://dx.doi.org/10.1080/1360786021000006956

Published online: 09 Jun 2010.

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 Aging & Mental Health 2003; 7(1): 39–52

ORIGINAL ARTICLE

The COPE index—a first stage assessment of negative impact,

positive value and quality of support of caregiving in
informal carers of older people

K. J. MCKEE1, I. PHILP1, G. LAMURA2, C. PROUSKAS3, B. ÖBERG4, B. KREVERS4,

L. SPAZZAFUMO2, B. BIEŃ5, C. PARKER1, M. R. NOLAN1 & K. SZCZERBINSKA6
ON BEHALF OF THE COPE PARTNERSHIP
1
University of Sheffield, UK; 2INRCA, Ancona, Italy; 3Sextant, Athens, Greece; 4University of Linko¨ping,
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Sweden; 5Medical Academy of Bialystok, Poland & 6Jagiellonion University, Krakow, Poland

Abstract
Data was collected in five countries from informal carers of older people (n ¼ 577) via a common protocol. Carers
completed: (1) a 17-item version of the Carers of Older People in Europe (COPE) Index, an assessment of carers’
perceptions of their role; (2) a questionnaire on demographic and caregiving circumstances; and (3) three instruments
included for the criterion validation of the COPE Index (the General Health Questionnaire, the Hospital Anxiety and
Depression Scale, and the World Health Organization Quality of Life-BREF). Principal Component Analysis of the
COPE Index was followed by internal consistency analysis of emergent components. Scales derived by summing items
loading on the components were analyzed for their association with the criterion measures. Two components, negative
impact and positive value, emerged consistently across countries. A third component, quality of support was less consistent
across countries. Scales derived from the negative impact and positive value components were internally consistent
and significantly associated with the criterion validity measures. These two scales and four items drawn from the quality
of support component were retained in the final COPE Index. While further testing is required, the COPE Index has current
utility in increasing understanding of the role perceptions of carers of older people.

Introduction experienced by family members caring for impaired

In the face of the challenge of ageing populations,
many industrialized countries are pursuing policies
to enable older people to live at home as long as
possible (Dooghe, 1992; Walker et al., 1993). In
achieving this aim, emphasis has been placed on the
role of family and other informal carers (Alber,
1993), who provide up to 80% of the support needed
by older people (Walker, 1995). Although carers are
often viewed primarily as a resource, there is
increasing awareness that they have needs in their
own right (Twigg & Atkin, 1994). Identification of
carers and an adequate assessment and response
to their needs, are therefore essential components of
policies for the care of older people across Europe
(Davies, 1995; Department of Health, 1996).
Much of the research into caregiving has focussed
on what has been termed the caregiving burden
(Zarit et al., 1980), the ‘physical, psychological or
emotional, social and financial problems that can be
older adults’ (George & Gwyther, 1986, p. 253). The
dominance of caregiver burden as the main focus for
research and intervention has been criticized
(Warnes, 1993). Like any relationship, a caregiving
relationship can be the source of satisfaction and
pleasure, as well as upset and frustration (Finch &
Mason, 1993). Caregiving is fundamentally a com-
plex task, and a focus on caregiver burden in
isolation from other positive aspects of the caregiving
relationship is therefore unlikely to provide a
comprehensive explanation of the outcomes
of informal care of older people (Nolan et al., 1996;
Rapp & Chao, 2000). Directing supportive efforts
only towards the reduction of burden may actually
serve to make a caregiving relationship more proble-
matic, while ignoring opportunities to enhance
the satisfactions gained from the relationship
(Cartwright et al., 1994). Furthermore, burdened
carers that derive satisfaction from their role may
require different intervention than burdened carers

Correspondence to: Professor I. Philp, SISA, Community Sciences Centre, Northern General Hospital, Sheffield S5 7AU,
UK. Tel: 114 271 5124. Fax: 114 271 5771. E-mail: i.philp@sheffield.ac.uk

Received for publication 5th November 2001. Accepted 24th April 2002.

ISSN 1360–7863 print/ISSN 1364–6915 online/03/010039–014
Taylor & Francis Ltd

DOI: 10.1080/1360786021000006956
 40 K. J. McKee et al.
who find little that is positive in a caregiving role
(Montgomery & Williams, 2001).
Valid and reliable assessment instruments are
required that enable practitioners to understand the
complexities of the caregiving role, as service systems
increasingly seek to work in a way that complements
and supplements, rather than replaces, the efforts
of family carers (Evers, 1995; Lyons et al., 2000).
However, despite advances in recent years, the needs
of family carers are rarely accorded priority and, if an
assessment occurs at all, it is usually ad hoc and
implicit (Fruin, 1998). Currently, the dominant
model for triggering formal intervention in informal
care of older people is an assessment of need in the
older person with regard to problems with activities
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of daily living (ADLs). However, such an approach
ignores the importance of the caregiver’s subjective
perceptions, which have been shown to be highly
influential in the outcomes of the caregiving relation-
ship (e.g., Philp et al., 1997). Thus, ADL assessment
of the older care-receiver is unlikely to provide
either a catalyst for improving professional under-
standing of the caregiving relationship, or a formula
for resolving difficulties in that relationship
(Middleton, 1994).
As partners in a European Commission funded
project, we sought to develop an instrument for carer
assessment, based on a theoretical model of caregiv-
ing for older people that emphasizes the carer’s
subjective perceptions of both negative and positive
aspects of caregiving (Nolan et al., 1996). We sought
to develop a brief, first-stage assessment instrument
that identifies carers who may need supportive
intervention and hence a more comprehensive
assessment. The availability of such an instrument
may potentially facilitate an assessment process
that is currently hindered by time-consuming
and unwieldy materials (Caldock, 1992). A literature
review (Borgemans et al., 2001) confirmed the
impression that no available instrument existed
that met the following criteria: short and easy to
complete; covering positive and negative aspects of
caring; and reflecting carers’ subjective perceptions
rather than their objective circumstances. Due to the
European dimension to our project, the assessment
instrument would also need to possess conceptual
equivalence across participating countries. In this
paper we describe the development of the Carers of
Older People in Europe (COPE) Index, and the
psychometric evaluation of its factor structure,
internal-consistency reliability, and criterion validity.
Method
Participants
A total of 577 informal carers took part in the study,
consisting of 106 (18.4%) from the UK, 126 (21.8%)
from Sweden, 98 (17.0%) from Greece, 88 (15.3%)
from Italy, 101 (17.5%) from Bialystok, Poland, and
58 (10.1%) from Krakow, Poland. To meet the
criteria for inclusion in the study as an informal
carer, participants had to be a relative, friend or
neighbour of a person aged 65 or above, having a
minimum of weekly contact with that person in order
to provide physical, emotional, domestic or financial
support.
Materials
COPE Index. The development of the COPE Index
proceeded through a series of phases. The first phase
consisted of a COPE project partnership meeting,
involving researchers from the different countries
participating in the project, to develop a prototype
first-stage assessment instrument for carers of older
people. The meeting was facilitated by an extensive
literature search of caregiver assessment instruments
(Borgemans et al., 2001), and focused on the
theoretical framework to be adopted by the project
(Nolan et al., 1996). The meeting then moved on to
proposing individual items for the assessment instru-
ment, and the response format most suitable for the
items. Proposed items tapped positive and negative
aspects of caregiving, and additionally examined
issues of social support. By the end of the meeting, a
prototype 12-item COPE Index in English was
produced.
In the second phase of development, the Index
underwent double-back translation from English into
Italian, Greek, Swedish, and Polish in order to
establish linguistic equivalence. In phase three, the
prototype instrument underwent cross-cultural face
validation. This was achieved through engagement
with an expert panel comprising researchers, policy
makers, social care managers and practitioners, and a
carer’s panel, in each of the five project countries. To
convene the expert panel, established contacts with
relevant organizations and professional groups local
to the partnership research establishments in each
country were used. The carer panel was convened
in the same manner, utilizing contacts with local
carer groups. The background to the COPE project
was explained in a presentation to the local groups
and organizations, and volunteers for participation
in panels were requested. It was explained that
the panels would participate in a focus group, the
purpose of which was to examine and discuss
the prototype COPE Index, to debate the concepts
used, to determine the importance of the domains
assessed, and to consider the structure and format of
the Index. The panel focus groups were convened,
structured, run, and analyzed in accordance with
standard focus group methodology (Reed & Payton,
1997; Vaughn et al., 1996).
The fourth phase of development consisted of a
meeting of the partnership researchers, to consider
the results of the focus groups. As a consequence

of recommendations arising from the focus group
transcripts analysis, five additional items were added
to the COPE Index. Item ordering, response format,
and data coding issues were finalized in the light of
the focus group transcripts analysis, prior to a final
period of translation, again following the procedures
adopted in phase two.
The COPE Index used in the psychometric study
reported here, was therefore the end product of the
above-described developmental process (Nolan &
Philp, 1999). This test version of the COPE Index
consisted of 17 items, each item having four response
categories: never, sometimes, often, and always.
Selection of a response category by a participant
indicated the degree to which they personally
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experienced caregiving in the way described by an
item. Since the appropriateness of some of the items
varied depending on the social circumstances of
participants, a response category of not applicable
was also provided for these items.
Background questionnaire Background information
about the carer and the cared for person was
obtained using a structured questionnaire of 23
items developed by the research team, which under-
went the same translation procedures adopted for the
COPE Index. Items addressed demographic infor-
mation, caregiving history, and current caregiving
circumstances.
Criterion validation measures The COPE Index had
been developed to assess carers’ subjective percep-
tions of positive and negative aspects of their
caregiving circumstances. Such perceptions have
previously been found to be important influences
on carers’ mental health and quality of life (e.g.,
Jutras & Lavoie, 1995; Nolan et al., 1996; Russo
et al., 1995). In order to test the criterion validity of
the COPE Index, the partnership selected ‘gold
standard’ instruments measuring mental health
and quality of life, available in the languages of
each of the countries of the COPE partnership and
shown to have good validity and reliability. The
selected measures were:
. The 28-item version of the General Health
Questionnaire (GHQ; Goldberg & Williams,
1988), which provides an overall measure of
psychological morbidity, and also resolves into
four scales: anxiety and insomnia, severe depres-
sion, somatic symptoms, and social dysfunction.
. The 14-item Hospital Anxiety and Depression
Scale (HADS; Zigmond & Snaith, 1983), which
resolves into two 7-item subscales assessing anxiety
and depression.
. The World Health Organization Quality Of Life
(WHOQoL)-BREF (World Health Organization,
1998), a 26-item measure of quality of life, which
resolves into four subscales tapping the following
quality of life domains: physical, psychological,
environmental, and social relationships.
The COPE Index: carer assessment 41
Procedure
Each COPE partnership site was charged with the
collection of data from a minimum of 85 carers. This
figure meets Cattells’ (1978) upper estimate for
acceptability of the cases-to-variable ratio in factor
analysis as 5 : 1 (his lower estimate of acceptability
being 3 : 1). A common recruitment and testing
protocol was developed by the COPE partnership, to
ensure that each partner adhered to a strict series of
procedures during data collection so as to minimize
bias. Inclusion and exclusion criteria for carers were
developed, with a convenience-sampling framework
adopted to provide a degree of flexibility in the
protocol in acknowledgement of local conditions.
Key aspects of the common protocol were (1) agreed
definition of an ‘informal’ carer, (2) processes for
the identification of and access to carers, (3) stan-
dardized information to introduce the purpose and
requirements of the study, (4) use of the standar-
dized cross-culturally validated questionnaire for
deriving sample background data, (5) agreement on
order of presentation of the study instruments, and
(6) use of a standard coding frame, incorporated into
the questionnaire.
The background questionnaire, together with the
prototype COPE Index and the criterion validity
measures, comprised the final questionnaire battery
used in the psychometric study, with counterbalan-
cing of the order of the components within each
site to minimize bias due to order effects. Carers
were identified and accessed via established channels
in each data collection site, with snowballing
techniques employed to achieve the required
sample size. Care was taken to ensure that carers
who had already contributed to the COPE Index
development process were not resampled. Question-
naires were administered by supervised self-comple-
tion using trained research assistants, or through
postal self-completion. Data collection occurred
in communal settings such as carer centres, day,
or general hospitals, or in the carer’s own home.
Completed questionnaire schedules were collated at
each site and returned to one site for central coding
and data entry. The average response rate across
sites, calculated by determining the ratio of com-
pleted questionnaires to the total number of carers
contacted and asked to participate, was 82%, with
the lowest response rate obtained in the UK (72%).
GHQ data were not collected in Sweden, while
WHOQoL-BREF data were only collected in one of
the two Polish sites.
Data analysis
The SPSS v10.0 for Windows database was used for
all data analysis. Following data checking and data
cleaning operations, preliminary analysis involved
the generation of parametric and non-parametric
descriptive statistics, as appropriate, for all variables.
 42 K. J. McKee et al.
The criterion validity measures were examined for
internal consistency via Cronbach’s alpha reliability
procedures, and subscales computed.
The 17 items of the prototype COPE Index were
subjected to a principal components analysis (PCA)
to determine the number of underlying components.
Due to the extensive differences between data
collection sites found during preliminary analyses
(in terms of method of questionnaire administration,
data collection setting, and the demographic status
and caregiving circumstances of the carers sampled),
PCAs were performed for each data collection site,
as well as for the complete data set, to see if the
pattern of components for each data collection site
was the same as that obtained in the PCA of the
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overall sample. For the Polish data, trial PCAs were
first performed only for Bialystock, then for
Bialystock and Krakow together. As there were no
appreciable differences between the two PCAs, the
complete Polish data set was employed in the final
analyses.
The analytic strategy employed was as follows.
Before commencing PCA, the data set was examined
and found to meet the requirements for satisfactory
multivariate analysis. Due to the theoretical deriva-
tion of the COPE Index as containing three under-
lying components (negative aspects of caregiving,
positive aspects of caregiving, issues of support),
following exploratory PCAs, restricted PCAs (where
the maximum number of components allowed was
specified as three) were additionally performed if
the exploratory solution contained more or less than
three components. Adequacy of component extrac-
tion was assessed through (1) use of the scree test,
(2) inspection of the residual correlation matrix
for residuals with r > 0.05, and (3) examination of
extracted components for reliability. Following
extraction, orthogonal rotation (varimax) was
employed with Kaiser normalization. Interpretation
of components was performed with a component
loading cut-off for variables set at 0.40 to maximize
simple structure.
Following the PCA, Cronbach’s alpha reliability
procedures were performed to assess the internal
consistency of the emergent COPE Index com-
ponents. Those COPE Index components with
satisfactory internal consistency were then examined
as summative scales, with reliability and descriptive
statistics computed. The scales were then analyzed
for association with the mental health and quality of
life measures using Pearson’s product-moment
correlation analyses, to establish the level of criterion
validity of the scales. Any remaining COPE Index
items that did not belong to the scales were then
examined for their association with the mental health
and quality of life measures, utilizing partial correla-
tion procedures that controlled for the variance in the
association due to any COPE scales.
Finally, the items contained in the background
questionnaire that accompanied administration of
the Index were also examined for their association
with the criterion validity measures, again utilizing
partial correlation procedures that controlled for the
variance in the association due to any COPE scales.
While alpha was set at p < 0.05 for each test, multiple
testing is acknowledged and analyses should be
interpreted accordingly.
Results
Participants’ responses to the items in the demo-
graphic and caregiving characteristics background
questionnaire are presented in Table 1. Participants’
demographic and caregiving characteristics varied
substantially across the countries involved in the
study. Responses to the 17 items of the test version of
the COPE Index are presented in Table 2. Apart
from the item ‘Does caregiving cause you financial
difficulties?’, a majority of carers indicated experien-
cing caregiving sometimes, often, or always, in the
way described by each of the items.
COPE index: principal component analysis
Results of the PCA of the COPE Index items are
presented in Table 3. Analysis of the overall data set
indicated the presence of three components (52.1%
of variance). The first component (33.7% variance)
contained items indicating that caregiving (1) had
a negative effect on health, (2) restricted social life,
(3) caused difficulties in relationships with friends
and family relationships, (4) was too demanding, (5)
left the carer with not a minute to himself/herself,
(6) caused the carer to feel trapped in the caregiving
role, (7) had a negative effect on emotional well-
being, and (8) and caused financial problems. This
component was labelled negative impact of caregiv-
ing. The second component (11.2% variance)
contained items indicating that the carer, (1) felt
caregiving was worthwhile, (2) had a good relation-
ship with the cared for person, (3) coped well
as a caregiver, (4) felt well supported by his/her
family, and (5) felt appreciated as a caregiver. This
component was labelled positive value in caregiving.
The third component (7.2% variance) contained
items indicating that the carer felt, (1) well supported
by health and social services, (2) well supported
by friends and neighbours, (3) appreciated as a
caregiver, and (4) well supported in the caregiver
role overall. This component was labelled quality of
support.
The PCAs within each country produced the
following best solutions (see Table 2): (1) UK, six
components (68.9% of variance), labelled negative
impact, positive value, restriction, formal support,
family support, external support; (2) Poland, three
components (54.6% of variance), labelled negative
impact, positive value, and quality of support;
 The COPE Index: carer assessment 43
TABLE 1. Participants demographic and caregiving characteristics
Characteristic Country: UK Sweden Greece Italy Poland
Site: Sheffield Linkoping Athens Ancona Bialystock Krakow
n (%): 106 126 98 88 101 58
Age
< 65 38 (38%) 49 (39%) 64 (67%) 57 (65%) 80 (82%) 42 (72%)
 65 63 (62%) 76 (61%) 32 (33%) 31 (35%) 18 (18%) 15 (26%)
Not known 5 1 2 0 3 1
Sex
Male 23 (22%) 45 (36%) 19 (20%) 18 (21%) 18 (18%) 8 (14%)
Female 82 (78%) 81 (64%) 77 (80%) 69 (79%) 83 (82%) 50 (86%)
Not known 1 0 2 1 0 0
Marital status
Married/cohabiting 79 (75%) 119 (94%) 69 (73%) 63 (72%) 69 (68%) 38 (67%)
Other 26 (25%) 7 (6%) 25 (27%) 25 (28%) 32 (32%) 19 (33%)
Not known 1 0 4 0 0 1
Occupational status
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Retired/unemployed 92 (88%) 84 (68%) 56 (58%) 64 (74%) 50 (50%) 25 (44%)

Employed 13 (13%) 40 (33%) 40 (42%) 22 (26%) 51 (51%) 32 (56%)
Not known 1 2 2 2 0 1
Perceived health
Good/very good 55 (53%) 101 (80%) 60 (62%) 36 (41%) 32 (32%) 16 (28%)
Fair 32 (31%) 23 (18%) 26 (27%) 40 (46%) 54 (54%) 32 (55%)
Poor/v. poor 17 (16%) 2 (2%) 11 (11%) 12 (14%) 15 (15%) 10 (17%)
Not known 2 0 1 0 0 0
Relationship with care-receiver
Spouse/partner 63 (59%) 88 (70%) 26 (27%) 19 (22%) 19 (19%) 9 (16%)
Child 13 (12%) 29 (23%) 38 (39%) 34 (39%) 38 (38%) 10 (18%)
Other 30 (28%) 9 (7%) 34 (35%) 35 (40%) 43 (43%) 38 (67%)
Not known 0 0 0 0 1 1
Living distance from care-receiver
Same building 73 (69%) 99 (79%) 79 (81%) 81 (92%) 67 (67%) 28 (48%)
Walk/10 minute travel 22 (21%) 12 (10%) 13 (13%) 7 (8%) 18 (18%) 11 (19%)
> 10 minutes travel 11 (10%) 15 (12%) 6 (6%) 0 (0%) 15 (15%) 19 (33%)
Not known 0 0 0 0 1 0
Care hours per week
< 20 16 (17%) 36 (36%) 20 (23%) 5 (6%) 38 (40%) 36 (62%)
20–160 31 (32%) 42 (42%) 18 (21%) 16 (18%) 32 (34%) 17 (29%)
24 hours per day 50 (52%) 22 (22%) 50 (57%) 66 (76%) 25 (26%) 5 (8%)
Not known 9 26 10 1 6 0
Duration of care
< 2 years 12 (12%) 28 (23%) 22 (23%) 19 (22%) 9 (9%) 16 (28%)
2–5 years 38 (37%) 39 (32%) 31 (32%) 23 (26%) 36 (37%) 14 (25%)
5þ years 50 (51%) 56 (46%) 43 (45%) 46 (52%) 52 (54%) 27 (47%)
Not known 8 3 2 0 4 1
Dependency level of care-receiver
Severe 59 (56%) 69 (55%) 44 (45%) 65 (75%) 42 (42%) 32 (55%)
Moderate 34 (32%) 39 (31%) 33 (34%) 18 (21%) 43 (43%) 16 (28%)
Slight/independent 13 (12%) 17 (14%) 21 (21%) 4 (5%) 15 (15%) 10 (17%)
Not known 0 1 0 1 1 0

(3) Greece, three components (55.8% of variance),
labelled negative impact, positive value, and quality
of support; (4) Italy, three components (57.9% of
variance) labelled negative impact, positive value,
and coping through support; and (5) Sweden, five
components (71.0% of variance) labelled negative
impact, positive value, engagement, finance, and
quality of support. Thus, the negative impact and
positive value components found in the PCA of
the overall data set were also clearly interpretable
as components within each of the country-specific
PCAs. The item consistency for the negative impact
component was very high across the separate country
PCAs, while the positive value component displayed
relatively more item variation. However, the quality
of support component found in the PCA of the
overall data set was not always interpretable as a
component in the separate country PCAs. Rather,
the items loading on the quality of support compo-
nent in the overall PCA often loaded on a variety of
components within the country-specific PCAs that
had not emerged in the overall PCA.
Reliability analyses and scale construction
For the overall data set, satisfactory internal con-
sistency was found for those items that loaded on the
negative impact component (Cronbach’s  ¼ 0.88),
with the internal consistency of the positive value
 44 K. J. McKee et al.
TABLE 2. Participant response to COPE Index items
Item Response Categories
Never Sometimes Often Always n/a*,
n % n % n % n % n
1. Do you feel you cope well as a 10 1.7 105 18.3 235 40.9 224 39.0 –
caregiver?
2. Do you find caregiving too demanding? 104 18.2 236 41.0 135 23.4 101 17.5 –
3. Does caregiving mean that you do not 139 24.1 215 37.3 150 26.0 72 12.5 –
have a minute to yourself?
4. Does caregiving cause difficulties in 215 38.6 174 31.2 117 21.0 51 9.2 16
your relationship with friends?
5. Does caregiving have a negative effect 166 28.8 256 44.4 102 17.7 52 9.0 –
on your physical health?
6. Does caregiving cause difficulties in 272 48.7 203 36.4 63 11.3 20 3.6 13
your relationship with your family?
7. Does caregiving cause you financial 314 54.7 166 28.9 59 10.3 35 6.1 –
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difficulties?
8. Do you feel trapped in your role as 164 28.6 182 31.8 103 18.0 124 21.6 –
caregiver?
9. Do you feel well supported by your 143 26.1 213 38.9 112 20.4 80 14.6 22
friends and/or neighbours?
10. Do you feel that caregiving restricts 152 27.1 208 37.1 113 20.2 87 15.5 12
your social life too much?
11. Do you find caregiving worthwhile 16 2.80 92 16.0 158 27.5 308 53.7
12. Do you feel well supported by 59 10.5 142 25.4 142 25.4 217 38.8 –
your family
13. Do you have a good relationship 8 1.4 70 12.3 117 20.5 376 65.8 8
with the person you care for?
14. Do you feel well supported by health 128 23.4 161 29.4 131 23.9 128 23.4 –
and social services?
15. Do you feel that anyone appreciates you 66 11.5 174 30.4 150 26.2 182 31.8 17
as a caregiver?
16. Does caregiving have a negative effect 139 24.2 269 46.9 117 20.4 49 8.5 –
on your emotional well-being?
17. Overall, do you feel well supported in 58 10.2 218 38.5 150 26.5 140 24.7 –
your role of caregiver?
*n/a ¼ not applicable; response percentages shown for each item are calculated excluding not applicable responses.

component more modest ( ¼ 0.67). However, only
six of the items that loaded on the negative impact
component for the overall data set also loaded on all
the negative impact components obtained from the
PCAs for each country. In order to maximize
the cultural comparability of any negative impact
scale that might emerge from the analysis, it was
decided to proceed with scale development using
only these six items. The six items had satisfactory
internal consistency (Cronbach’s  ¼ 0.84), which
could not be improved through item removal. For
the positive value component, internal consistency
was also not improved through trial item removal.
For the quality of support component, acceptable
internal consistency could not be obtained.
The six items drawn from the negative impact
component and the five items drawn from the
positive value components were then separately
summed, and the properties of these summative
scales considered for each country. The results of
these analyses are presented in Table 4. Internal
consistency of the negative impact scale was satisfac-
tory across countries, with alpha values ranging from
0.83 for the UK to 0.86 for Sweden and Italy.
Internal consistency of the scale within countries
could not be improved via item removal. For the
positive value scale, alpha ranged from 0.58 in
Poland to 0.73 in Sweden. Internal consistency of
the scale within some countries could be marginally
improved by item removal: removing the item ‘Do
you feel well supported by your family?’ raised alpha
to 0.72 for the UK; removing the item ‘Do you
feel you cope well as a caregiver?’ raised alpha to 0.62
in Greece.
Criterion validity analyses
The Pearson product-moment correlation coeffi-
cients between the negative impact and positive
value scales and the mental health and quality of life
measures are presented in Table 5. The negative
impact scale demonstrated significant associations
in the expected directions with the criterion mea-
sures. The level of significance of most associations
was high, and the absolute level of the bivariate
correlations was also substantial. The positive value
scale also demonstrated significant associations in
the expected directions with the criterion measures,
although the absolute level of the correlations was
not as high as those between the criterion measures
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TABLE 3. Principal component analysis of COPE index: results for overall data-set and per country
Country: Overall (n ¼ 488)* United Kingdom (n ¼ 94)*
Component: 1 2 3 1 2 3 4 5 6
Item:
1. Do you feel you cope well as a caregiver? 0.61 0.67
2. Do you find caregiving too demanding? 0.74 0.66 0.47
3. Does caregiving mean that you do not have a minute to yourself? 0.72 0.87
4. Does caregiving cause difficulties in your relationship with friends? 0.74 0.59 0.60
5. Does caregiving have a negative effect on your physical health? 0.79 0.75
6. Does caregiving cause difficulties in your relationship with your family? 0.61 0.51 0.40
7. Does caregiving cause you financial difficulties? 0.46 0.66
8. Do you feel trapped in your role as caregiver? 0.69 0.42 0.47
9. Do you feel well supported by your friends and/or neighbours? 0.69 -0.80
10. Do you feel that caregiving restricts your social life too much? 0.79 0.62
11. Do you find caregiving worthwhile 0.75 0.83
12. Do you feel well supported by your family 0.48 0.88
13. Do you have a good relationship with the person you care for? 0.67 0.82
14. Do you feel well supported by health and social services? 0.68 0.77
15. Do you feel that anyone appreciates you as a caregiver? 0.46 0.60 0.40 0.60
16. Does caregiving have a negative effect on your emotional well-being? 0.65 0.66
17. Overall, do you feel well supported in your role of caregiver? 0.69 0.82
Eigenvalues: 5.73 1.90 1.22 2.90 2.20 2.07 2.01 1.44 1.10
Variance (%): 33.7 11.2 7.20 17.1 12.9 12.2 11.8 8.5 6.5

Country: Poland (n ¼ 154)* Greece (n ¼ 94)*

Component: 1 2 3 1 2 3
Item:
1. Do you feel you cope well as a caregiver? 0.60 0.45
2. Do you find caregiving too demanding? 0.66 0.79
3. Does caregiving mean that you do not have a minute to yourself? 0.77 0.70
4. Does caregiving cause difficulties in your relationship with friends? 0.81 0.71
5. Does caregiving have a negative effect on your physical health? 0.80 0.80
6. Does caregiving cause difficulties in your relationship with your family? 0.69 0.45 0.41
7. Does caregiving cause you financial difficulties? 0.68 0.66
8. Do you feel trapped in your role as caregiver? 0.66 0.79
9. Do you feel well supported by your friends and/or neighbours? 0.63 0.82
10. Do you feel that caregiving restricts your social life too much? 0.76 0.79
11. Do you find caregiving worthwhile 0.71 0.68
12. Do you feel well supported by your family 0.65 0.60 0.44
The COPE Index: carer assessment

13. Do you have a good relationship with the person you care for? 0.50 0.61

(continued)
45
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46

TABLE 3. Continued
Country: Overall (n ¼ 488)* United Kingdom (n ¼ 94)*
Component: 1 2 3 1 2 3 4 5 6
14. Do you feel well supported by health and social services? 0.76 0.55
15. Do you feel that anyone appreciates you as a caregiver? 0.52 0.52 0.77
K. J. McKee et al.

16. Does caregiving have a negative effect on your emotional well-being? 0.53 0.48 0.62
17. Overall, do you feel well supported in your role of caregiver? 0.64 0.40 0.72
Eigenvalues: 4.85 2.16 2.28
Variance (%): 28.5 12.7 13.4

Country: Italy (n ¼ 85)* Sweden (n ¼ 61)*

Component: 1 2 3 1 2 3 4 5
Item:
1. Do you feel you cope well as a caregiver? 0.74 0.73
2. Do you find caregiving too demanding? 0.73 0.66 0.40
3. Does caregiving mean that you do not have a minute to yourself? 0.82 0.46 0.67
4. Does caregiving cause difficulties in your relationship with friends? 0.75 0.74
5. Does caregiving have a negative effect on your physical health? 0.75 0.68
6. Does caregiving cause difficulties in your relationship with your family? 0.61 0.45 0.66
7. Does caregiving cause you financial difficulties? 0.91
8. Do you feel trapped in your role as caregiver? 0.73 0.79
9. Do you feel well supported by your friends and/or neighbours? 0.65 0.92
10. Do you feel that caregiving restricts your social life too much? 0.90 0.82
11. Do you find caregiving worthwhile 0.48 0.50 0.44 0.52
12. Do you feel well supported by your family 0.70 0.50 0.47 0.52
13. Do you have a good relationship with the person you care for? 0.66 0.77
14. Do you feel well supported by health and social services? 0.55 0.62
15. Do you feel that anyone appreciates you as a caregiver? 0.76 0.70
16. Does caregiving have a negative effect on your emotional well-being? 0.72 0.60 0.44
17. Overall, do you feel well supported in your role of caregiver? 0.45 0.71 0.70 0.46
Eigenvalues: 4.95 2.81 2.08 4.25 2.73 2.29 1.42 1.39
Variance (%): 29.1 16.5 12.2 25.0 16.0 13.5 8.32 8.16
*For each analysis, n reflects missing data.
 The COPE Index: carer assessment 47

and the negative impact scale. When these associa-
tions were examined within countries, the negative
impact scale was found to be significantly associated
( p < 0.05) with all criterion measures once again, for
all countries. However, there was variation across
countries in terms of the level of association between
the positive value scale and criterion measures. For
Greece and Sweden, all tests were significant ( p <
0.05). For Italy and Poland, all tests except one were
significant. For the UK, however, the only significant
associations were a negative correlation with GHQ
severe depression and a positive association with
WHOQoL psychological. The negative impact and
positive value scales were significantly negatively
correlated (whole data set, r ¼ 0.43, p < 0.001).
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four items and the criterion validity measures
presented in Table 6.
Finally, five of the items contained in the back-
ground questionnaire that accompanied the Index
were also significantly associated with the criterion
validity measures in the data sets of most countries,
even with negative impact and positive value scale
scores statistically controlled. These items were
(1) carer self reported health, (2) carer age, (3) carer
occupational status, (4) relationship to the cared
for, and (5) living distance between carer and the
cared for.
Discussion

From the original COPE Index, six items
remained that were not part of either the negative
impact scale or the positive value scale. Correlation
analyses indicated that these items demonstrated
significant associations with the mental health and
quality of life measures. After controlling for scores
on the negative impact and positive value scales using
partial correlation procedures, only four of the items
remained significantly associated with more than
one of the criterion measures. These items were:
(1) ‘Does caregiving cause you financial difficulties?’;
(2) ‘Do you feel well supported by your friends and/
or neighbours?’; (3) ‘Do you feel well supported
by health and social services?’; and (4) ‘Overall, do
you feel well supported in your role of caregiver?’.
The partial correlation coefficients between these
Based on a theoretical model of informal caregiving
of older people that addresses positive as well as
negative aspects of caregiving (Nolan et al., 1996),
and following focus group work with carers, we
sought to develop and validate an instrument for brief
first-stage assessment of informal carers. In the
analysis, two scales emerged as potential inclusions
in a revised COPE Index: a six-item negative impact
scale and a five-item positive value scale. In addition,
three items assessing quality of support and one
item assessing financial difficulties offer themselves
for retention in the revised Index as individual items.
Despite substantial variation in carer characteristics
across data collection sites, common negative impact
and positive value components were clearly inter-
pretable in the individual PCAs for the UK, Greece,

TABLE 4. Internal consistency and descriptive statistics of negative impact and positive value scales overall and by country
Component: Negative Impact*
Items:
Does caregiving have a negative effect on your emotional well-being?
Do you find caregiving too demanding?
Does caregiving have a negative effect on your physical health?
Does caregiving cause difficulties in your relationship with your family?
Do you feel trapped in your role as a caregiver?
Does caregiving cause difficulties in your relationship with your friends?
Scale Statistics: N/n M SD 
Overall 542 12.65 4.28 0.84
United Kingdom 103 13.43 3.47 0.83
Sweden 95 12.52 4.71 0.86
Italy 87 12.33 4.62 0.86
Greece 98 13.15 4.77 0.85
Poland 159 12.08 3.90 0.85
Component: Positive Value
Items:
Do you find caregiving worthwhile?
Do you have a good relationship with the person you care for?
Do you feel that anyone appreciates you as a caregiver?
Do you feel you cope well as a caregiver?
Do you feel well supported by your family?
Scale Statistics: N/n M SD 
Overall 551 15.7 2.94 0.67
United Kingdom 98 14.9 2.80 0.64
Sweden 114 16.0 3.06 0.73
Italy 86 17.1 2.70 0.70
Greece 96 16.0 2.83 0.58
*Negative impact component reverse scored. High score on negative impact scale indicates high negative impact. High score on positive
value scale indicates high positive value.
 48 K. J. McKee et al.
TABLE 5. Bivariate associations between negative impact and positive value scales and criterion validity measures
COPE Index Subscales: Negative Impact Positive Value
n r* n r*
Outcome measures:
General Health Questionnaire:
Anxiety and insomnia 438 0.51 429 0.35
Depression 438 0.40 428 0.37
Social dysfunction 432 0.26 422 0.25
Somatic symptoms 436 0.46 427 0.29
Total 420 0.52 412 0.38
Hospital Anxiety and Depression Scale
Anxiety 482 0.51 481 0.35
Depression 482 0.51 482 0.34
World Health Organization Quality of Life: BREF
Social relationships 428 0.45 429 0.31
Environment 430 0.43 431 0.32
Physical 428 0.46 430 0.23
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Psychological 425 0.45 428 0.40

*Correlation coefficients all p < 0.001.

TABLE 6. Partial correlation coefficients for non-scale COPE Index items with criterion validity measures with negative
impact and positive value scales controlled
Outcome Measures General Health Questionnaire Hospital Anxiety and
Depression Scale
Anxiety and Depression Social Somatic Total Anxiety Depression
Insomnia Dysfunction Symptoms
COPE Index items
Does caregiving cause you 0.11* 0.13** -0.06 0.11* 0.11* 0.11* 0.11*
financial difficulties?
Do you feel well supported by 0.09 0.05 0.04 0.01 0.06 0.06 -0.07
your friends and/or neighbours?
Do you feel well supported by 0.01 0.00 0.12* -0.02 0.02 0.01 -0.05
health and social services?
Overall, do you feel well supported 0.15** 0.05 0 .01 0.15** 0.05 0.05 0.07
in your role of caregiver?
World Health Organization Quality of Life-BREF
Environment Physical Psychological Social
Relationships
Does caregiving cause you financial 0.21*** 0.08 0.08 0.06
difficulties?
Do you feel well supported by your 0.10* 0.16** 0.06 0.26***
friends and/or neighbours?
Do you feel well supported by 0.33*** 0.02 0.08 0.03
health and social services?
Overall, do you feel well supported in 0.27*** 0.11* 0.14** 0.16**
your role of caregiver?
* p<0.05; ** p<0.01; *** p<0.001. Degrees of Freedom for analyses: GHQ Anxiety and Insomnia ¼ 425, Depression ¼ 424, Social
Dysfunction ¼ 418, Somatic Symptoms ¼ 423, Total ¼ 408; HAD Anxiety ¼ 477, Depression ¼ 478; WHOQoL-BREF Environment ¼ 426,
Physical ¼ 424, Psychological ¼ 421, Social Relationship.

Italy, Poland, and Sweden. The item composition of
the negative impact component was highly consistent
across countries, while the positive value component
had more variation in its item composition. Our
analyses indicated that the negative impact compo-
nent of the Index had satisfactory internal consis-
tency, even when the number of items was limited to
six to maximize cultural comparability. The internal
consistency of the positive value component was
marginally lower than the value most commonly
regarded as acceptable ( ¼ 0.70; Nunnally, 1967),
with optimal reliability attained by inclusion of all
five of the items loading on the component. When
considered as a summative scale, the six-item negative
impact scale had satisfactory internal consistency
across all countries, with the means for all countries
falling within one standard deviation of the mean
obtained in the overall data set. The five-item positive
value scale had variable internal consistency; reaching
acceptable levels in Sweden and Italy, while in the UK
an acceptable internal consistency could be obtained
through the omission of one item. Individual country
means for the positive value scale again fell within one
standard deviation of the overall mean.

The criterion validity analyses were encouraging.
The negative impact scale was highly correlated in
the expected direction with the GHQ, HAD and
WHOQOL-BREF measures. Correlation coeffi-
cients varied from 0.52 for the association with
GHQ total score, to 0.26 for the association with
GHQ social dysfunction, demonstrating satisfactory
gradations of convergence and divergence with
the mental health and quality of life measures. The
positive value scale was also correlated in the
criterion validity analyses with these measures in
the expected directions, although the absolute size
of the correlations was somewhat lower. Correlation
coefficients ranged from 0.40 for the associations
with WHOQoL-BREF psychological, to 0.23 for
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WHOQoL-BREF physical. There was also more
variation across countries in how successfully the
positive value scale performed in the criterion validity
analyses.
Of interest is the level of association between the
negative impact and positive value scales. A potential
criticism of the theoretical framework from which
the COPE Index is derived, is that caregiving is best
understood as a one-dimensional psychological
experience, with positive and negative ends to that
continuum. This criticism is hard to sustain given
that the negative impact and positive value scales
share only 18% of variance, suggesting divergent
indicators of an underlying construct. This finding
complements other work that has demonstrated
that positive and negative appraisals of the caregiv-
ing role are largely independent (Rapp & Chao,
2000).
While the presence of negative impact and positive
value components in each country analysis suggest
common cross-cultural experiences in caregiving
(cf. Patterson et al., 1998), it is clear that the negative
impact scale demonstrates better internal consistency
and criterion validity than the positive value scale.
One possible reason for this is that the negative
impacts of caregiving are culturally more common
and specific, while the positive values of caregiving
are more individual and diverse. Following this
argument, most people would derive similar frustra-
tions and stresses as a result of caring for an older
person, but the positive values that emerge would
be more integral to the nature of the individual
caregiving relationship, and the specific context in
which caregiving occurred. There is some evidence
to support this interpretation. In a study of the daily
hassles and uplifts of 78 carers of people who had
suffered a stroke, Kinney and colleagues (1995)
found that the mean number of different daily hassles
described was 13.85, compared with a mean for
different daily uplifts of 22.68.
It could also be argued that, of the two scales, the
negative impact scale would be anticipated to share
more variance with measures of mental health and
quality of life than would the positive impact scale,
given the extensive research that has demonstrated
The COPE Index: carer assessment 49
the deleterious effects of caregiving on these
domains. Indeed, in the Kinney et al. (1995) study
described above, a finding mirroring that in the
present study was that daily caregiving hassles were
found to be more strongly associated with psycho-
logical well-being than were daily caregiving uplifts.
As there has been relatively little research on the
positive aspects of caregiving, it is less clear what
measures might most appropriately be used for the
purposes of demonstrating criterion validity of a scale
purported to measure positive value in caregiving. A
measure of life satisfaction might have proved most
appropriate, but we were unable to identify a
standardized and validated measure available in the
languages of all partners. Despite the relatively
modest psychometric results for the positive value
scale, the fact that each country sample produced a
higher mean score on the five-item positive value
scale than the six-item negative impact scale indi-
cates that positive value in caregiving is a frequent
phenomenon that requires more thorough investiga-
tion. In particular, further investigation of positive
aspects of caregiving relationships, perhaps facili-
tated through use of the COPE Index, could provide
health and social care practitioners with insights
and opportunities for tailoring supportive interven-
tions to the individual needs of carers (Montgomery
& Williams, 2001). Our analyses suggest that
boosting caregiving satisfactions may have potential
benefits in terms of reduced psychological morbidity
and enhanced quality of life for the carer.
While a third component related to quality of
support emerged in the PCA of the overall data set
and in the PCAs of several countries, its item
composition varied considerably. Indeed, in the
PCA of the UK data, items relating to quality of
support loaded on no less than three separate
components. Acceptable internal consistency could
not be demonstrated for this component within the
overall data set. It should perhaps come as no
surprise that the items addressing issues of quality
of support loaded on a number of components
that differed from country to country. There are
considerable differences across countries in the role
of formal services in supporting older people and
informal carers, in financial entitlements and inter-
ventions, and in family structures and cultural
expectations (Alber, 1993). Furthermore, there is
no a priori reason why a carer’s perception of
the quality of support he/she receives from health
or social services should vary systematically with,
for example, his/her perception of the quality of
support received from family and friends. Never-
theless, three items assessing quality of support issues
were shown to be individually significantly asso-
ciated with the criterion validity measures, while
statistically controlling for the negative impact
and positive value scales, indicating the importance
of the issue of quality of support for caregivers’
well-being.
 50 K. J. McKee et al.
We present the revised version of the COPE Index
in the Appendix. A six-item negative impact scale
and a five-item positive value scale are both included
in the revised Index. The four items that did not
belong to either scale and yet demonstrated associa-
tion with the criterion validity measures once
negative impact and positive values were controlled,
are included also as individual items. Order of
presentation of the items mirrors that in the version
used in the psychometric study. All but one of the
items in the Index were endorsed by the majority of
carers in our sample as representing their caregiving
experience, suggesting strong face validity in the
instrument. Taken together with the extensive
development work, the internal consistency analyses,
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and the criterion validity analyses, we suggest that we
have gone some way toward demonstrating the
construct validity of the revised COPE Index.
However, it is recognized that the degree of success
with which this has been achieved is variable across
different elements of the Index.
The work described in this paper suggests the
suitability of the COPE Index as a first stage
assessment instrument to screen carers for identifica-
tion of those requiring in-depth assessment (Nolan
et al., 1998). Many aspects of the Index are encoura-
ging, notably its brevity and simplicity, and its
attempt to address both positive and negative aspects
of the caregiving process. This, together with the
attention it directs to the quality of support the carer
receives, differentiates the Index from other brief
assessment instruments developed for use with
informal carers of older people which tend to focus
only on negative aspects of the caregiving process
(e.g., Zarit et al., 1980; Robinson, 1983; Kinney and
Stephens, 1989; Lawton, 1989; Novak & Guest,
1989; Vitaliano, 1991; Rankin et al., 1992; Schene
et al., 1994; Pot et al., 1995; England & Roberts,
1996). Trials of the acceptability of the COPE Index
to carers, practitioners, and decision-makers are
underway in several countries (e.g., Wojszel et al.,
2001), in order to determine its place as a tool for use
in primary health and social care. During any
administration of the revised Index, we recommend
that six items on carer characteristics should be
included in a questionnaire that accompanies the
administration (see Appendix). Five of these items
(carer self-reported health, carer age, carer occupa-
tional status, relationship to care-receiver, and living
distance between carer and care-receiver) were
found to explain variance in our criterion validity
measures, and therefore may provide valuable
collateral information to practitioners trying to
make an informed judgement about carers’ percep-
tion of their role. A sixth item, gender of carer, is
also suggested for inclusion in such a questionnaire
to provide sufficient data for comparison of carer
samples. This is to facilitate a potential use of the
Index to identify carers’ perception of their circum-
stances at the population level, where there is a need
for information to aid the development of public
policy in this important aspect of social welfare
(cf. Harahan, 2001).
Work is currently underway for the translation,
cross-cultural validation, and test of the component
structure of the Index in French, German, Dutch,
Portuguese, and Spanish populations. Although we
undertook rigorous theoretical and cross-cultural
development of the prototype COPE Index, and
used strict protocols for data collection and analysis,
our use of convenience sampling resulted in con-
siderable variation in the characteristics of the carer
samples obtained across the data collection sites, and
in the methods of administration of the COPE Index.
We cannot therefore differentiate cross-cultural
effects from sampling differences, and would not
wish to generalize the findings for our sample to the
wider population of carers from which our sample
was drawn. Further studies of the Index’s psycho-
metric properties will be required to confirm our data
on validity and reliability in different settings and
groups. For example, using the Index with a sample
of carers of older people with dementia and with a
sample of carers of older people with, say, osteoar-
thritis, would enrich our understanding of how the
instrument performs psychometrically. At the same
time such work would offer insight into how
caregiving negative impact and positive value varies
as a function of caring for older people who differ
in their care needs (Philp et al., 1995, 1997; McKee
et al., 1997). Future goals include determining the
test–retest reliability of the Index, improving the
psychometric properties of the positive value scale,
establishing scoring norms on the Index, and
demonstrating the predictive validity of the Index
for a range of psychological, behavioural, and clinical
outcomes.
Acknowledgements
The study reported in this paper was co-ordinated by
the Sheffield Institute For Studies on Ageing,
University of Sheffield, and supported by a grant
from the European Commission 4th Framework
Biomedicine and Health Programme, Contract
No: BMH-4-98-3374/IC20-CT0213. Further data
collection in individual countries was supported
by the following organizations: State Committee
For Scientific Research Grant No 4 PO5D 058
15 (Bialystock, Poland); County Council of
Östergötland, Municipality of Motala (Sweden);
Comunità Montana delle Alte Valli del Fiastrone,
Chienti e Nera  Zona ‘I’ of Camerino, Province
of Macerata (Italy). The support of Z. Krol, Director
of SPZOZ Srodmiescie, Kraków and the Institute of
Public Health at Collegium Medicum of Jagiellonian
University in Kraków, is also gratefully acknowl-
edged. The authors would like to acknowledge the
supportive comments and insightful suggestions for

improvement provided by two anonymous reviewers
of a previous draft of this paper.
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Relatives of the impaired elderly: correlates of feelings

of burden. The Gerontologist, 20, 649–655. (6) Does caregiving cause difficulties in your relationship
ZIGMOND, A.S. & SNAITH, R.P. (1983). The Hospital with your family?
Anxiety and Depression Scale. Acta Psychiatrica Always œ Often œ Sometimes œ
Scandinavica, 67, 361–370. Never œ N/A œ
(7) Does caregiving cause you financial difficulties?
Appendix: The COPE Index Always œ Often œ Sometimes œ
Never œ
Carer Details (8) Do you feel trapped in your role as a caregiver?
Always œ Often œ Sometimes œ
Your date of birth: (day/month/year) ........................... Never œ

In general would you say your health is: (9) Do you feel well supported by your friends and/or
Very good œ Good œ Fair œ neighbours?
Poor œ Very poor œ Always œ Often œ Sometimes œ
Never œ N/A œ
What is your relationship to the person you care for?
Spouse/Partner œ Sibling œ (10) Do you find caregiving worthwhile?
Child œ Daughter or Son-in-law œ Always œ Often œ Sometimes œ
Other Family œ Friend/Neighbour œ Never œ

Your gender: (11) Do you feel well supported by your family?

Male œ Female œ Always œ Often œ Sometimes œ
Never œ N/A œ
Your occupational status:
Employed full-time œ (12) Do you have a good relationship with the person you
Employed part-time œ care for?
Retired œ Always œ Often œ Sometimes œ
Unemployed œ Never œ
Full-time Study œ (13) Do you feel well supported by health and social
Where do you and the person you care for live? services?
In the same household œ (for example, public, private, voluntary)
In different households but the same building œ Always œ Often œ Sometimes œ
Within walking distance œ Never œ N/A œ
Within 10 minutes drive/bus or train journey œ (14) Do you feel that anyone appreciates you as a
Within 30 minutes drive/bus or train journey œ caregiver?
Within 1hours drive/bus or train journey œ Always œ Often œ Sometimes œ
Over 1hours drive/bus or train journey œ Never œ N/A œ
(15) Does caregiving have a negative effect on your
emotional well-being?
Index Questions Always œ Often œ Sometimes œ
Never œ
(1) Overall, do you feel well supported in your role of
caregiver? Is there anything else you would like to tell us?