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R E S E A R C H A R T I C L E Open Access
Cancer caregiving tasks and consequences and
their associations with caregiver status and the
caregiver’s relationship to the patient: a survey
Line Lund
1*
, Lone Ross
1
, Morten Aagaard Petersen
1
and Mogens Groenvold
1,2
Abstract
Background: Seriously ill patients often depend on their informal caregivers to help and support them through the
disease course. This study investigated informal cancer caregivers’experiences of caregiving tasks and consequences
and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient
(spouse/partner, etc.) are related to these experiences.
Methods: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses
and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’
(CaTCoN) to 1–3 of their caregivers.
Results: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of
caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a
range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but
relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with
some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers
experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest
workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a
psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for
living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with
caregiver status or the caregiver’s relationship to the patient were found.
Conclusions: Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest
caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving
consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest
caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.
Keywords: Cancer, Informal caregivers, Cross-sectional questionnaire study, Caregiving tasks, Caregiving consequences,
Caregiver status, Caregiver’s relationship to the patient
* Correspondence: lundline@gmail.com
1
The Research Unit, Department of Palliative Medicine, Bispebjerg and
Frederiksberg Hospitals and University of Copenhagen, Bispebjerg Bakke 23,
DK-2400 Copenhagen, NV, Denmark
Full list of author information is available at the end of the article
© 2014 Lund et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain
Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article,
unless otherwise stated.
Lund et al. BMC Cancer 2014, 14:541
http://www.biomedcentral.com/1471-2407/14/541
Background
Informal caregivers to patients with a life-threatening dis-
ease such as cancer are often deeply involved in the patient’s
disease and provide extraordinary and uncompensated care.
The caregivers may take on a range of disease related tasks,
e.g., provision of emotional support [1-3], physical care
[4-7], treatment monitoring [1,4,5,8], and symptom manage-
ment [1,5,8]. In addition, the caregivers also frequently take
over or assist with everyday tasks [8], such as cooking [9],
housekeeping [4,5,7], and child care [9], if the patient has
become unable to carry out these [1]. These tasks can be
emotionally, physically, socially, and financially demanding
[10], and 10–50% of the caregivers experience considerable
strain [11,12]. Negative consequences of caregiving, such
as depression [1,3-6,10,13-18], anxiety [1,4-7,10,13-16],
distress/stress [3,7,13-15,17], fatigue [1,6,7,15,16], and in-
somnia [1,5-7,15,16], have frequently been reported. Thus,
caregiving may have significant costs to the caregivers’
own well-being [3,10]. The strain on the caregiver may
also affect the patient [19]. Yet, to take on the responsi-
bility as a caregiver is often regarded an ethical, social,
and compassionate obligation and by living up to this
obligation and doing ‘the right thing’, the deed can be
motivating and rewarding. Thus, positive consequences of
caregiving, such as improved sense of self-worth [5,13,17],
post-traumatic growth [17], relationship enhancement
[20,21], and altered perspective on living [20], have also
been described.
Relatively few large caregiver surveys have been conducted
(but see e.g., [8]), i.e., the studies documenting caregiving
tasks and consequences have often included relatively
small samples of caregivers, many have been qualitative
studies, or the studies have elucidated only one or few as-
pects of being a caregiver. The majority of studies have fo-
cused on caregivers with the status as primary caregiver
(typically appointed by the patient) or spouses/partners.
Not much attention has been paid to non-primary care-
givers or caregivers with more distant relationships to the
patients than spouses/partners.
The present study is a survey including a large sample
of cancer caregivers representing various caregiver status
(appointed primary or non-primary caregiver) and formal
relationships to the patient (spouses/partners, children,
etc.). The questionnaire used is the ‘Cancer Caregiving
Tasks, Consequences and Needs Questionnaire’(CaTCoN)
which elucidates a broad range of caregiving aspects. The
CaTCoN was developed and validated in order to map the
caregiving experience more comprehensively than existing
instruments [22].
The aims of this study were:
A) To measure the proportions of cancer caregivers
experiencing burdensome caregiving tasks and
consequences
B) To investigate how caregiver status and the
caregiver’s relationship to the patient are related to
the caregiving tasks and consequences.
Regarding aim B, our hypotheses were that primary
caregivers and caregivers with the closest relationships
to the patient took on more caregiving tasks and experi-
enced more consequences of being a caregiver than
non-primary caregivers and caregivers with more distant
relationships to the patients, respectively.
Methods
Study population and questionnaire distribution
In January-July 2010, a sample of cancer patients was
randomly selected from medical records in five hospital
departments (departments of oncology, haematology, gy-
naecology and surgery) at three different hospitals in the
Copenhagen area. Non-terminal, adult (18+ years) male
and female patients with a range of cancer diagnoses and
disease stages were included.
Caregiver questionnaires (three copies) were sent to the
patients, asking them to pass the questionnaires on to one
to three adult caregivers involved in their disease course.
Patients reporting that no caregivers had been involved in
their disease course were excluded. The questionnaires
were identical except that one questionnaire was directed
towards and marked ‘primary caregiver’.
The study complied with the Helsinki II Declaration
and was approved by the Danish Data Protection Board
(jr.no. BBH-2009-01). The protocol was presented to the
National Committee on Health Research Ethics (proto-
col no. H-1-2010-FSP-22) and was found not to require
formal approval.
Measures
Cancer caregiving tasks, consequences and needs
questionnaire (CaTCoN)
The 72-item CaTCoN measures cancer caregiving tasks
and consequences and the caregivers’needs mainly con-
cerning information from and communication and con-
tact with health care professionals [22]. The validity and
reliability of the CaTCoN were evaluated by using psy-
chometric analyses and tests of convergent/discriminant
validity with the existing instruments FAMCARE [23]
and FIN [24] and were found to be satisfactory: Cronbachs
alpha ranged 0.65-0.95, and hypothesized convergent and
divergent CaTCoN and FAMCARE/FIN scales correlated
0.59-0.74 and −0.11-0.25, respectively [25]. The CaTCoN
contains nine subscales (each containing between two and
14 items) and 31 single items (including two open-ended
items for qualitative comments). The majority of items con-
tain four ordinal response categories and a ‘don’t know/not
relevant’category. Single item scores are expressed on a
scale ranging 0 (no burden/problems) to 100 (maximum
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burden/problems), excluding the ‘don’t know/not relevant’
category. Subscale scores are estimated as the mean of ‘in-
formation carrying’item scores (i.e., responses in all other
categories than the ‘don’t know/not relevant’category)
also expressed on a range from 0 (no burden/problems) to
100 (maximum burden/problems). The subscale scores
used in the present analyses were calculated if responses
to half or less of the items were missing or in the ‘don’t
know/not relevant’category.
The caregivers were also asked a range of socio-
demographic questions (see ‘Variables’section).
Variables
Outcomes
This article reports the results concerning caregiving tasks,
i.e., the CaTCoN subscale ‘caregiving workload’(items 1a,
1b, 1c, 3, 4) and single item 2, and caregiving consequences,
i.e., the CaTCoN subscales ‘lack of time for social relations’
(items 6c, 6d) and ‘lack of personal growth’(items 6e, 6f,
6g), and single items 6a, 6b, 7, 8, 9, 20, 34, 38, 39, 40 and 41
[22,25] as shown in Table 1, left column.
Independent variables
This study focused on two independent variables: 1)
‘caregiver status’, classified as primary or non-primary
caregiver to the patient based on the mark on the ques-
tionnaire and 2) ‘the caregiver’s relationship to the patient’,
classified as spouse/partner, child, parent, sibling, or other
(e.g., friend, colleague) based on information in the ques-
tionnaire. Among the latter, we hypothesized that spouses/
partners and (for young patients) the patient’s parents would
have the closest relationships to the patients.
The following independent variables were also included:
caregiver gender, age, marital status, having children or not,
education, employment, job description, and place of living;
and patient gender, age, diagnosis, disease stage, inclusion
group (i.e., diagnosed within the last year, diagnosed more
than a year ago and in treatment, or diagnosed more
than a year ago and off treatment), time since diagnosis,
and type of hospital department (from which the patient
was sampled).
Data analysis
The proportion of patients with at least one participating
caregiver was calculated. Characteristics (shown in Table 2,
left column) of eligible patients with at least one participat-
ing caregiver and eligible patients without a participating
caregiver were compared using logistic regression analysis.
Similarly, and regarding the same patient characteristics, the
patients with a participating primary caregiver were com-
pared to those without a participating primary caregiver
(but with at least one participating non-primary caregiver).
The association between caregiver status and the caregiver’s
relationship to the patient was investigated. Furthermore,
the associations between the independent variables and
whether or not the participating spouse/partner was the
primary caregiver were investigated using logistic regres-
sion analysis.
For the total sample of caregivers, frequencies and mean
scores for each of the 22 included CaTCoN items and mean
scores for the three subscales were calculated.
The associations between independent variables and
the CaTCoN single items and subscales were tested
using regression analyses. In the regression analyses, ad-
justment was made to account for the fact that care-
givers related to the same patient were not independent
(each patient could have up to three participating care-
givers). The adjustment was done by using the PROC
MIXED procedure for subscales and the PROC GLIMMIX
procedure for single items in the SAS statistical package v.
9.3 [26]. For the linear regression analysis with the three
CaTCoN subscales as dependent variables, the normal dis-
tribution of the subscale was examined by inspection of re-
siduals, q-q plot, skewness, and kurtosis. To be able to use
the PROC GLIMMIX procedure, single items with four or-
dinal categories were dichotomised in the middle, creating
a positive versus a negative response.
In the regression analysis, independent variables associ-
ated at a significance level < 0.20 with the particular out-
come in an initial univariate regression analysis were
entered in a multiple regression model. Backward stepwise
regression analysis was undertaken for model building. A
significance level of 0.05 was chosen for the multivariate
analyses. Only data from the multivariate analyses is shown.
Finally, the association between caregiver status, rela-
tionship to the patient, and perceived stress was examined
in a three-way table.
Results
Study population
A total of 856 patients were identified and were sent
questionnaires to pass on to their caregivers. Subse-
quently, 104 of these patients were excluded from the
study as they did not meet the inclusion criteria (e.g.,
the patients were terminal/deceased or replied that no
caregivers had been involved in the disease course). The
remaining 752 patients were eligible.
From the 752 eligible patients, 598 caregivers responded
to the questionnaire. Of these, eight questionnaires were
excluded because the caregiver was <18 years old (n = 5),
or the questionnaire was filled in by the patient (n = 3),
resulting in a final sample of 590 participating caregivers
included in the analyses.
Characteristics of patients with one or more participating
caregivers
The 590 participating caregivers were related to 415
(55%) of the 752 eligible patients as some patients had
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Table 1 Frequencies (%) and mean scores of responses regarding caregiving tasks and consequences (n = 590 caregivers)
CaTCoN items
Frequencies (%) Mean
a
Std Dev
CaTCoN single items
Caregivng tasks
To what extent have you had to provide: None A little Some A lot Don’t know/not relevant Missing
1a. Practical help to the patient? 13 32 24 29 1 1 56.9 34.4
1b. Personal care to the patient? 49 26 12 8 2 3 25.7 32.0
1c. Psychological support to the patient? 3 20 32 42 1 2 71.9 28.7
2. It is the responsibility of the hospitals to make referrals
and appointments for examination and treatment. Have
you felt that you have been partially responsible for
keeping track of whether the patient has been referred
and called for examinations and treatments quickly and
correctly?
Not at all To a low degree To some degree To a high degree Don’t know/not relevant Missing
62 16 9 8 4 1 20.8 32.5
3. Have you felt that you have had too much
responsibility in relation to home care (personal care,
medications, etc.)?
60 20 8 7 5 1 19.7 30.6
4. Have you spent time transporting the patient? No, not at all Yes, a little Yes, some Yes, a lot Don’t know/not relevant Missing
23 27 23 25 1 1 50.3 37.0
Caregiving consequences
Has the patient’s cancer disease: No, not at all Yes, a little Yes, some Yes, a lot Don’t know/not relevant Missing
6a. Caused you stress? 9 29 28 31 2 1 61.0 32.7
6b. Had a negative effect on your own physical health? 52 29 11 5 2 1 22.7 28.9
6c. Meant that you have not had enough time for (the
rest of) your family?
49 28 13 6 3 1 25.1 30.5
6d. Meant that you have not had enough time for (the
rest of) your friends/acquaintances?
45 28 14 9 3 1 29.1 33.0
6e. Increased you awareness of the important things in
life?
5 18 30 45 2 1 27.5 30.0
6 f. Caused you to make positive changes? 19 39 24 11 5 1 57.1 30.7
6 g. Made you value your relationships with other people
more?
10 26 31 29 4 1 39.4 32.7
7. Have you been able to take time off, get leave of
absence from work, or make similar arrangements to the
extent it has been necessary?
Always/almost always Mostly Only sometimes Rarely/never Don’t know/not relevant Missing
40 13 4 4 38 2 17.3 28.4
8. Has the patient’s illness meant that you have had to
be absent from work so much that it has posed
problems at your workplace?
Not at all To a low degree To some degree To a high degree Don’t know/not relevant Missing
50 11 4 1 33 1 11.6 22.7
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Table 1 Frequencies (%) and mean scores of responses regarding caregiving tasks and consequences (n = 590 caregivers) (Continued)
9. Have you experienced negative financial consequences
of being a caregiver?
71 11 6 3 8 1 11.6 24.6
20. Have you needed financial counselling? No Yes Missing
94 6 0 6.1 24.0
34. Have you needed to see a psychologist as a
consequence of the patient’s illness?
80 20 0 20.4 40.3
38. Have you had the need to be able to take a break
from the practical tasks (in the role of caregiver) in
connection to the illness?
To a high degree To some degree To a low degree Not at all Don’t know/not relevant Missing
6 16 17 39 21 1 29.0 33.6
39. Have you felt that you have had the possibility to
take a break from the practical tasks?
18 18 14 14 35 1 46.4 37.1
40. Have you had the need to lead a ‘normal’life at the
same time as you have been a caregiver?
38 29 12 8 12 1 70.3 32.4
41. Have you felt that you have had the possibility to
lead a ‘normal’life at the same time as being a caregiver?
35 36 16 5 7 1 30.5 29.4
CatCoN subscales
Caregiving workload (items 1a, 1b, 1c, 3, 4) 45.1 23.5
Lack of personal growth (items 6e, 6f, 6g) 41.1 26.1
Lack of time for social relations (items 6c, 6d) 27.3 30.0
a
Mean score range from 0 (no burden/problems) to 100 (maximum burden/problems).
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Table 2 Patient characteristics
Eligible
patients
Patients with
participating caregiver(s)
Proportion
participating (%)
Odds
ratio
#
(OR)
95% confidence
interval
All 752 415 55
Gender Female 445 238 53 1.00 -
Male 307 177 58 1.18 (0.88-1.59)
Age 18-39 years 85 43 51 0.88 (0.54-1.45)
40-49 years 77 40 52 0.93 (0.56-1.56)
50-59 years 122 71 58 1.20 (0.77-1.86)
60-69 years 240 129 54 1.00 -
70+ 228 132 58 1.18 (0.82-1.71)
Diagnosis Head and neck 66 37 56 1.11 (0.63-1.97)
Gastrointestinal 146 85 58 1.22 (0.78-1.89)
Gynaecological 176 94 53 1.00 -
Breast 60 28 47 0.76 (0.42-1.37)
Leukaemia 148 79 53 1.00 (0.64-1.55)
Other (lung, prostate, urinary etc.) 155 91 59 1.56 (0.83-2.95)
Missing 1 1 100 - -
Stage (TNM)** 1 162 76 47 1.00 -
2 109 48 44 0.89 (0.55-1.45)
3 79 57 72 2.93 (1.64-5.24)
4 106 63 59 1.66 (1.01-2.72)
Cancer with no TNM stage/missing 296 171 58 - -
Inclusion
group*
1 (diagnosed within the last year) 321 187 58 1.42 (1.04-1.94)
2 (diagnosed > 1 year ago, and in
treatment)
96 60 63 1.70 (1.07-2.71)
3 (diagnosed > 1 ago, and off treatment) 327 162 50 1.00 -
Missing 8 6 75 - -
Time since
diagnosis
< 6 months 179 100 56 0.99 (0.66-1.50)
6-12 months 138 85 62 1.26 (0.80-1.98)
1–2 years 120 64 53 0.90 (0.56-1.42)
2-5 years 182 102 56 1.00 -
> 5 years 129 61 47 0.70 (0.45-1.11)
Missing 4 3 75 - -
Hospital
department
Oncology/Haematology 569 316 56 1.00 -
Gynaecology 120 58 48 0.75 (0.51-1.11)
Surgery 63 41 65 1.49 (0.87-2.57)
Marital
status**
Married/cohabiting 294 266 90 1.00 -
Other (divorced/separated, single, widow(er)) 128 91 71 0.26 (0.15-0.45)
Missing 330 58 18 - -
Education No education 58 45 78 0.87 (0.39-1.90)
Student/under education 6 5 83 1.25 (0.14-11.31)
Non-theoretical or short education
(<1 year)
93 82 88 1.86 (0.84-4.14)
Short theoretical education (1–3 years) 92 84 91 2.63 (1.09-6.30)
Long theoretical education (>3 years) 100 80 80 1.00 -
University education 56 49 88 1.75 (0.69-4.44)
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provided more than one caregiver. Characteristics of
eligible patients and ‘participating patients’(patients
with at least one participating caregiver) are shown in
Table 2 .
‘Participation’was most common among married pa-
tients and among patients with stage three disease and less
common among patients diagnosed with cancer more than
a year ago and currently off treatment (inclusion group 3)
(Table 2).
‘Participating patients’with a participating primary care-
giver did not differ from ‘participating patients’without a
participating primary caregiver (data not shown).
Characteristics of the participating caregivers
Characteristics of the participating caregivers (n = 590) are
shown in Table 3. Concerning caregiver status, about half
of the caregivers (51%) were primary caregivers. The care-
givers’relationship to the patients were spouses/partners
(46%), children (31%), parents (8%), siblings (7%), and
other, e.g., friends or colleagues (8%).
Table 4 illustrates the association between caregiver
status and the caregiver’s relationship to the patient. Of
the patients who had a spouse/partner among their par-
ticipating caregivers, 64% viewed the spouse/partner as
the primary caregiver. Thirty-six percent of the patients
with a parent among their participating caregivers viewed
the parent as the primary caregiver (of these patients, 88%
were below 40 years of age, data not shown).
Whether or not the participating spouse/partner was the
primary caregiver was significantly associated (p = 0.0351)
with the severity of disease: Among patients with stage 1
disease, 77% of the participating spouses/partners were pri-
mary caregivers. This proportion dropped to 59% and 56%
for patients with stage 2 and 3 disease, respectively, and
among patients with stage 4 disease, 49% of the participating
spouses/partners were primary caregivers (data not shown).
Frequency of problems
The distribution of the 590 participating caregivers’an-
swers to the 22 CaTCoN items is shown in Table 1.
Table 2 Patient characteristics (Continued)
Missing 347 70 20 - -
Job
description
Self-employed 53 47 89 1.44 (0.57-3.61)
Salaried 232 196 84 1.00 -
Skilled worker 58 49 84 1.00 (0.45-2.21)
Un-skilled worker 37 30 81 0.79 (0.32-1.93)
Assisting spouse 9 7 78 0.64 (0.13-3.22)
Missing 363 86 24 - -
Employment
before cancer
Full time 176 153 87 1.00 -
Part time 45 42 93 2.10 (0.60-7.35)
Old age pension 119 100 84 0.79 (0.41-1.53)
Early retirement pension 57 44 77 0.51 (0.24-1.09)
Other (student, un-employed, housewife) 19 16 84 0.80 (0.22-2.97)
Missing 336 60 18 - -
Current
employment
Full time 124 108 87 1.52 (0.79-2.94)
Part time 43 40 93 3.01 (0.87-10.37)
Old age pension 163 133 82 1.00 -
Early retirement pension 65 55 85 1.24 (0.57-2.71)
Other (student, un-employed, housewife) 21 17 81 0.96 (0.30-3.06)
Missing 336 62 18 - -
Place of living In the country/village 74 67 91 1.64 (0.69-3.89)
Smaller provincial town 65 51 78 0.62 (0.31-1.26)
Bigger provincial town 64 53 83 0.83 (0.39-1.75)
City or suburb 219 187 85 1.00 -
Missing 330 57 17 - -
Characteristics (obtained from medical records and self-reported) of the 752 eligible patients and the 415 patients with at least one participating caregiver, and
comparison (OR) of characteristics of eligible patients with at least one participating caregiver and eligible patients without a participating caregiver.
#
Odds for participation is analysed using logistic regression analysis.
*0.05 > p > 0.01 in the logistic regression analysis.
**p < 0.001 in the logistic regression analysis.
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Caregiving tasks
Fifty-three percent of the caregivers provided some or a
lot of practical help to the patient, 20% provided some
or a lot of personal care, and 74% provided some or a
lot of psychological support. Although the items indi-
cated that ideally this should not be the case, 17% of the
caregivers felt that they to some or to a high degree had
been partially responsible for coordinating examinations
and treatments, and 15% felt that they to some or to a
high degree had had too much responsibility in relation
to home care. About half (48%) had spent some or a lot
of time transporting the patient.
Consequences of caregiving
More than half of the caregivers (59%) reported that the
patient’s illness had caused them some or a lot of stress,
and 16% reported some or a lot of negative effect on their
own physical health. Twenty percent had needed to see a
psychologist. Nineteen percent and 23% of the caregivers
reported that they had not had enough time for their
Table 3 Caregiver characteristics
n (=590) %
Caregiver status
Primary caregiver 299 51
Non-primary caregiver 291 49
Relationship to the patient
Spouse/partner 271 46
Child of the patient 182 31
Parent to the patient 47 8
Sibling 39 7
Other (e.g., friend, colleague) 48 8
Missing 3 1
Gender
Female 358 61
Male 228 39
Missing 4 1
Age (years)
18-39 117 19
40-49 120 20
50-59 128 22
60-69 143 24
70+ 79 13
Missing 3 1
Marital status
Married/cohabiting 478 81
Other (divorced/separated, single, widow(er)) 108 18
Missing 4 1
Have children
No 114 19
Yes 470 80
Missing 6 1
Place of living
Country/village 94 16
Smaller provincial town 97 16
Bigger provincial town 90 15
City or suburbs 301 51
Missing 8 1
Level of education
No education 43 7
Student 18 3
Non-theoretical or short education (<1 year) 104 18
Short theoretical education (1–3 years) 109 18
Long theoretical education (>3 years) 188 32
University education 106 18
Missing 22 4
Table 3 Caregiver characteristics (Continued)
Job description
Self-employed 56 9
Salaried 345 58
Skilled worker 82 14
Un-skilled worker 40 7
Assisting spouse 12 2
Missing 55 9
Employment
Full time 281 48
Part time 91 15
Old age pension 112 19
Early retirement pension 59 10
Other (student, un-employed, housewife) 37 6
Missing 10 2
Table 4 The association between caregiver status and the
caregiver’s relationship to the patient
Primary
caregiver
Non-primary
caregiver
Total
Spouse/partner 174 (64%) 97 (36%) 271
Parent 17 (36%) 30 (64%) 47
Child 70 (39%) 112 (62%) 182
Sibling 17 (44%) 22 (56%) 39
Other (friend, colleague, etc.) 19 (40%) 29 (60%) 48
Missing -- 3
Total 297 290 590
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family and friends, respectively. Twenty-two percent had
had the need to take a break from the practical tasks to
some or to a high degree, and 67% had had the need to
lead a ‘normal’life while being a caregiver to some or to a
high degree. Yet, 28% and 21%, respectively, felt that they
had had the possibility for this only to a low degree or
not at all.
Eight percent had only sometimes or rarely/never been
able to take the necessary time off from work etc., and for
5% the absence from work had caused them problems at
their workplace. Nine percent had experienced financial
consequences of being a caregiver to some or to a high de-
gree, and 6% had needed financial counselling.
Increased awareness of the important things in life, posi-
tive changes, and valuing relationships to other people
more was experienced only a little or not at all by 23%,
58%, and 36% of the caregivers, respectively.
Multivariate analysis
The associations between the CaTCoN outcomes and the
two independent variables caregiver status and the care-
giver’s relationship to the patient are shown in Table 5
(the associations between the CaTCoN outcomes and the
remaining included independent variables can be found in
Additional file 1).
The status of the caregiver was associated with two out
of 15 outcomes. Primary caregivers had higher workload
than non-primary caregivers, and non-primary caregivers
had more problems with getting time off from work than
primary caregivers.
The caregiver’s relationship to the patient was associated
with six out of 15 outcomes. Parents to the patient had
the highest workload, followed by the spouse/partner.
Friends, colleagues etc. experienced the lowest degree of
personal growth whereas parents to the patient, followed
by the spouse/partner, experienced the highest degree.
Parents to the patient, followed by the patient’sspouse/
partner, experienced most lack of time for social relations.
Spouses/partners experienced most financial difficulties.
Parents to the patient, closely followed by the patient’s
spouse/partner, had the greatest need for seeing a psych-
ologist. Friends, colleagues etc. had the greatest need for
living a normal life while being a caregiver whereas par-
ents to the patient, followed by the spouse/partner, had
the smallest need.
Regarding the remaining independent variables (see
Additional file 1), caregiver employment and caregiver
gender were most often associated with the outcomes.
Caregiver employment was associated with five out-
comes, but no clear picture emerged regarding which
groups were the most burdened. Caregiver gender was as-
sociated with four outcomes; women experienced more
problems, but also more personal growth in relation to be-
ing a caregiver than men.
Caregiver status and the caregiver’s relationship to the
patient associated with caregiver stress
In line with the multivariate analysis, Table 6 shows that
large proportions (47%-71%) of all groups of caregivers,
regardless of status and the caregiver’s relationship to
the patient, experienced some or a lot of stress. That is,
experiencing stress was not limited to the primary care-
giver or the caregivers with the closest relationships to
the patients.
Discussion
The present study is unique by including a large sample of
caregivers and addressing their caregiving tasks and con-
sequences by using the newly developed and validated
questionnaire CaTCoN and by specifically investigating
the caregiver status and the caregiver’srelationshiptothe
patient. Most previous studies addressing cancer caregiv-
ing have focused on the patient’s partner/spouse (as the
primary caregiver) [3,14] and when caregivers with other
relationships to the patient have been included, the associ-
ations between these relationships and outcomes have not
been examined [18,27-29]. Also, no previous studies have
investigated the caregiver’s status and relationship to the
patient in parallel, i.e., examined whether their associa-
tions with various outcomes are the same. This study is
therefore a valuable supplement to the existing studies of
cancer caregiving.
A large proportion of caregivers experienced a consider-
able caregiving workload related to practical help, psycho-
logical support, and transport. Negative consequences of
being a caregiver were frequently experienced, e.g., 59% of
the caregivers reported stress. Thus, the study documents
that being a caregiver is demanding and has its costs; it
may jeopardise the caregivers’own well-being. At the same
time, being a caregiver may also bring positive experiences
and consequences as seen in this study. However, substan-
tial proportions of the caregivers reported no or minimal
positive changes.
Concerning the frequencies of theoutcomesinthisstudy,
several of the caregiving aspects have been investigated in
previous studies, but the findings cannot be compared dir-
ectly due to the difference in methods. However, the overall
findings of this study regarding caregiving workload are in
agreement with previous findings. For instance, Yabroff and
Kim (2009) found that the time spent by informal care-
givers was substantial and burdensome [30], and van Ryn
et al. (2011) found that large proportions of caregivers
assisted with activities of daily living and moreover watched
for treatment side effects (68%), helped managing pain,
nausea, or fatigue (47%), etc. [8]. Our finding that distress/
stress is commonly experienced by caregivers is also in
agreement with previous studies [3,7,13-15,17], but is still
remarkable in a country where focus for some time has
been on the caregivers and on initiatives to help them.
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Table 5 Associations between CaTCoN outcomes and caregiver status and the caregiver’s relationship to the patient (n = 590)
CatCoN outcomes
Subscales Single items
Caregiving workload
(items 1a, 1b, 1c, 3, 4)
Lack of personal
growth (items
6e, 6f, 6g)
Lack of time for
social relations
(items 6c, 6d)
Problems with
getting time off
from work (item 7)
Financial
difficulties
(item 9)
Need for seeing
a psychologist
(item 34)
Need for living
anormallife
(item 40)
Estimate
a
(SE) Estimate
a
(SE) Estimate
a
(SE) OR
a
(95% CI) OR
a
(95% CI) OR
a
(95% CI) OR
a
(95% CI)
Caregiver status P = 0.0332 P = 0.0224
Primary 0 (−) 1.00 (−)
Not primary −4.06 (1.89)* 2.23 (1.12-4.41)
The caregiver’s relationship to the patient P < 0.0001 P = 0.0018 P < 0.0001 P = 0.0036 P = 0.0001 P = 0.0116
Spouse/partner 0 (−)0(−)0(−) 1.00 (−) 1.00 (−)1.00(−)
Child −12.38 (2.22)** 1.07 (2.68) −16.23 (3.46)** 0.44 (0.18-1.05) 0.22 (0.11-0.46) 1.74 (0.96-3.14)
Parent 7.01(3.69) −9.04 (4.14)* 1.76 (4.82)
b
1.02 (0.44-2.41) 0.76 (0.33-1.73)
Sibling −14.67(3.77)** 4.75 (4.35) −15.51(5.04)**
b
0.10 (0.02-0.38) 3.18 (0.97-10.48)
Other (e.g., friend colleague) −14.56 (3.80)** 13.29 (4.41)** −11.91 (4.88)*
b
0.19 (0.06-0.60) 5.36 (1.45-19.80)
Other
b
(parent, sibling, friend, colleague etc.) 0.19
b
(0.07-0.56)
The associations were tested with multivariate regression analyses also including other independent variables. In this table, only the significant associations are shown (all in all, the associations with 15 outcomes
were tested).
a
A higher estimate indicates higher workload, increased lack of personal growth, and higher degree of insufficient time for social relations, and OR is the odds ratio for ‘problems’/’consequences’.
b
Item 9 had a quite high number of missings and further a pronounced skewed distribution of answers. To ensure a minimum of three caregivers in each variable response category we collapsed categories in this
variable into fewer categories.
*0.05 > p > 0.01, **p < 0.01 in the linear regression analysis of the three subscales.
Lund et al. BMC Cancer 2014, 14:541 Page 10 of 13
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This study is unique by investigating the extent to which
caregiving tasks and consequences vary, depending on
caregiver status and relationship to the patient. One might
assume that the subdivision of the caregivers into care-
giver status and the caregiver’s relationship to the patient
would be redundant, expecting that the closest caregivers,
especially the spouses/partners (when present), would al-
most always have the status as primary caregivers. But
Table 4 shows that actually more than one third of the par-
ticipating spouses/partners were not the patients’primary
caregivers, and conversely that a significant proportion of
caregivers with the most distant formal relationships as
friends, colleagues etc. was in fact primary caregivers. We
found that the proportion of primary caregivers among the
participating spouses/partners dropped with increasing se-
verity of disease. This could reflect the involvement of sev-
eral caregivers as the disease progresses. That is, in stage 1,
the spouse/partner was often the primary caregiver, and it
is likely that no other caregivers were deeply involved in
the management of the disease. In metastatic disease, how-
ever, more caregivers could be deeply involved in the prac-
tical tasks, in the contact with the health care system etc.,
and perhaps the patient considered all caregivers equally
involved (or actually someone else than the spouse/partner
as most involved) and passed on the primary caregiver
questionnaire to someone else than the spouse.
Regarding caregiver status, one finding in this study
was that primary caregivers –as hypothesized –experi-
enced higher caregiving workload than non-primary
caregivers. As the primary caregiver by definition is the
caregiver most involved in the patient’s disease course,
this finding might seem obvious, but this study is in fact
the first to focus on and document the association in
this way. The other finding was that non-primary care-
givers had significantly more problems with getting time
off from work than primary caregivers. This finding
could seem surprising as the primary caregivers would
be likely to have a greater need of getting time off. Yet,
perhaps being a primary caregiver entitles the caregiver
to make workplace arrangements that enable them to
get time off more easily. Caregiver status was not associ-
ated with any other outcomes which was contrary to
expectations. For instance, it could be reasonable to as-
sume that primary caregivers experienced more stress,
more personal growth, more lack of time for social rela-
tions, and more negative physical consequences than
non-primary caregivers, but neither of these hypotheses
were confirmed. These findings point out that in many
aspects non-primary caregivers are affected to the same
degree as primary caregivers.
Regarding some aspects, the spouses/partners and par-
ents to the patients were most burdened and experienced
most consequences of being caregivers. The literature
addressing the caregiver’s relationship to the patient is
limited, but a few studies have investigated the associ-
ation between the caregiver’s relationship to the patient
and financial difficulties. Yabroff & Kim (2009) and Van
Houtven et al. (2010) found that spouses faced higher eco-
nomic burden than other relatives and friends [30,31]
which is in compliance with our finding. Still, the number
of ‘negative’findings in our study was surprising. For in-
stance, we would have expected that the closest caregivers
experienced most stress, but this was not confirmed. In
other words, regarding several caregiving aspects, the
more distant caregivers were affected to the same degree
as the closest caregivers, underlining that focus should be
not only on the spouses/partners and parents, but also on
the remaining caregivers.
The study had a relatively equal distribution of ‘par-
ticipating’very ill and less ill patients: of the patients
with participating caregivers who could be assigned a
disease stage, 51% had early stages of cancer (TNM
stages 1–2), and 49% had advanced cancer (TNM stages
3–4). Also, about half (45%) of the patients with partici-
pating caregivers had been diagnosed within the last year
(Table 2). It is noteworthy that the patient characteristics
stage, time since diagnosis, and in or off treatment were
associated with only two outcomes (‘need for living a
normal life’and ‘lack of possibility for living a normal
life’) out of 15. That is, the majority of our findings con-
cern not only caregivers to very ill patients or caregivers
who has been struggling for the patient for years, but
also caregivers to less ill patients and caregivers who re-
cently have become caregivers.
This study shows that there is a need for addressing not
only the patient’s primary or closest caregiver which previ-
ously has been the norm, but to acknowledge that a patient
has more than one caregiver and that they are all affected
by the patient’s disease. It is important to acknowledge all
caregivers regardless of caregiver status and relationship to
the patient and to include them all in studies and interven-
tions. For the future, caregivers should be in plural.
Strengths and limitations
As in any survey, the generalizability of the findings was
limited by non-participation. Nevertheless, as the caregivers
Table 6 Caregiver stress
Primary
caregiver
Non-primary
caregiver
Spouse/partner 110/174 (63%) 63/97 (65%)
Parent 12/17 (71%) 20/30 (67%)
Child 41/70 (59%) 60/112 (54%)
Sibling 10/17 (59%) 11/22 (50%)
Other (friend, colleague, etc.) 9/19 (47%) 14/29 (48%)
The association between caregiver status, relationship to the patient, and
perceived stress: the proportions (and percentages) of caregivers who felt that
the patient’s disease had caused them some or a lot of stress.
Lund et al. BMC Cancer 2014, 14:541 Page 11 of 13
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were invited by the patients, the fact that caregivers to 55%
of the eligible patients responded appears reasonable when
taking into account that some patients probably did not re-
port to the study group that they did not have any care-
givers sufficiently involved to be considered relevant for the
study and instead chose not to respond. Optimally, and to
estimate the caregiver response rate more accurately, data
regarding how many caregivers each patient had and how
many caregivers the patient chose to invite should have
been collected.
The fact that the patients were ‘gatekeepers’for the care-
givers may have had an influence on the kind of caregivers
invited; for instance, as also described in a recent study of
caregivers of Girgis et al. [32], the patients might have
wished to spare the most burdened caregivers from more
disease related issues and as a consequence have been in-
clined to invite caregivers with a lower burden. This could
be a reason for the relatively large non-response from pri-
mary caregivers (i.e., 28% of patients with participating
caregivers had no primary caregiver participating), and if
this is the case, responses from the most burdened care-
givers are lacking in this study, and the results may
thereby underestimate the overall level of tasks and conse-
quences among caregivers.
Major strengths of the study are the large sample size,
the measurement of a range of aspects regarding tasks
and consequences of caregiving, and the elaboration of
the associations with caregiver status and the caregiver’s
relationship to the patient.
Conclusions
Our findings confirm that cancer caregiving is burden-
some: large proportions of cancer caregivers experienced
substantial caregiving workload, such as provision of prac-
tical help and emotional support and help with transport.
Caregivers reported a range of negative consequences of
being a caregiver, most commonly stress. Some caregivers
experienced personal growth, but relatively large propor-
tions did not.
The caregiver status was only associated with two out-
comes: primary caregivers experienced the highest care-
giving workload, and non-primary caregivers had most
problems with getting time off from work. Regarding
some caregiving aspects, spouses/partners and/or par-
ents (i.e., the caregivers with the closest relationships to
the patients) seemed to be the most burdened caregivers,
i.e., they experienced the highest workload, most lack of
time for social relations, most financial difficulties, and
had the greatest need for seeing a psychologist, but they
also experienced the highest degree of personal growth
and had the smallest need for living a normal life while
being a caregiver.
All in all, the primary and the closest caregivers seemed
to take on most caregiving tasks, but regarding the majority
of caregiving consequences, non-primary and more distant
caregivers were affected to the same degree as the primary
and closest caregivers. Thus, initiatives and interventions to
support all caregivers are warranted.
Additional file
Additional file 1: Multivariate analysis of the associations between
CaTCoN outcomes and independent variables (n = 590). This file
contains the significant results of the multivariate regression analyses of
the included 15 CaTCoN outcomes and the included independent
variables (except for the variables ‘caregiver status’and ‘the caregiver’s
relationship to the patient’which have been shown separately in
Table 5).
Competing interests
The authors declare that they have no competing interests.
Authors’contributions
LL, LR and MG developed the study design. LL carried out the data
collection. LL and MAP performed the statistical analyses. LL, LR and MG
drafted the manuscript. All authors read and approved the final manuscript.
Acknowledgements
The research was supported by grants from the Danish Cancer Society
(Grant OKV 08007). Data has not previously been published.
Author details
1
The Research Unit, Department of Palliative Medicine, Bispebjerg and
Frederiksberg Hospitals and University of Copenhagen, Bispebjerg Bakke 23,
DK-2400 Copenhagen, NV, Denmark.
2
The Department of Health Services
Research, Institute of Public Health, University of Copenhagen, Oster
Farimagsgade 5, DK-1014 Copenhagen K, Denmark.
Received: 7 April 2014 Accepted: 22 July 2014
Published: 28 July 2014
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doi:10.1186/1471-2407-14-541
Cite this article as: Lund et al.:Cancer caregiving tasks and
consequences and their associations with caregiver status and the
caregiver’s relationship to the patient: a survey. BMC Cancer 2014 14:541.
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