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HPQ0010.1177/1359105316633285Journal of Health PsychologyCairo Notari et al.

Article

Journal of Health Psychology

The caregiver burden in male


1­–10
© The Author(s) 2016
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DOI: 10.1177/1359105316633285
with non-metastatic breast hpq.sagepub.com

cancer: The protective role


of couple satisfaction

Sarah Cairo Notari1, Nicolas Favez1,


Luca Notari1, Linda Charvoz2
and Jean-François Delaloye3

Abstract
We examined the evolution of the subjective burden of romantic partners caring for women with non-
metastatic breast cancer and investigated the moderating role of couple satisfaction on caring stress.
Forty-seven partners filled out questionnaires 3 and 12 months after surgery. Using a stress process model,
we examined caring stressors and moderating factors (couple satisfaction, coping and social support) as
predictors of subjective burden. Results showed that subjective burden decreases over time and that the
couple satisfaction largely explains it above and beyond other influential variables. Partners dissatisfied with
their couple relationship are especially vulnerable to the stress of caregiving.

Keywords
breast cancer, caregiver burden, couple satisfaction, male romantic partner, stress process model

Introduction
Breast cancer is the most common cancer among neighbours) who does not possess any training in
women (Bray et al., 2004). An international epi- health or psychological care and who provides
demiological study showed that its incidence rose unpaid care for the patient (Carretero et al., 2009).
by 30%–40% worldwide from the 1970s to the
1990s (Althuis et al., 2005). The growing need
1University of Geneva, Switzerland
for assistance and care for patients, and the
2University of Applied Sciences and Arts Western
impossibility for public health to face this increas-
Switzerland, Switzerland
ing demand, has progressively shifted the burden 3University Hospital of Lausanne, Switzerland
of patient care from hospitals to informal caregiv-
ers (Feldman and Broussard, 2006). The term Corresponding author:
Sarah Cairo Notari, Faculty of Psychology and Educational
‘informal caregiver’ is used in the literature to Sciences, University of Geneva, Bd. du Pont-d’Arve 40,
define a person from the close environment (e.g. 1205 Geneva, Switzerland.
partner, adult child or other relatives, friends and Email: Sarah.Cairo@unige.ch

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2 Journal of Health Psychology 

In most cases, the romantic partner is the princi- romantic partners in terms of caregiver burden
pal relative involved in this role (Li et al., 2013). (e.g. Lopez et al., 2012; Wagner et al., 2011).
The partners of women with breast cancer are Moreover, the evolution over time of the car-
in charge of providing emotional support and egiver burden has rarely been studied, although
helping the woman to manage her negative it is known that the care tasks, the burden felt by
emotions such as despair, fear and sadness the caregiver and his well-being may fluctuate
(Bozo et al., 2009; Lethborg et al., 2003). following possible changes in the patient’s
Caregiving also implies assuming the manage- health (Nijboer et al., 1998; Stenberg et al.,
ment of the home and children (if any), while 2010). Evolution over time is all the more
assisting the woman in the daily management of important to consider when studying non-meta-
her disease and continuing to carry out work and static breast cancer, where the medical condi-
social commitments (Bakas et al., 2001; Bigatti tion of the patient can rapidly change following
and Wagner, 2003). The role of informal car- the treatment phase and where, in most cases,
egiver thus includes multiple responsibilities. patients enter a rehabilitation phase after a rela-
In the literature, this set of care tasks was tively short period. In this context, the caregiv-
referred to as an ‘objective burden’, which is er’s subjective burden may also rapidly change
distinguished from the ‘subjective burden’, in accordance with the medical condition of the
defined as the feeling of intrusiveness and dis- patient.
ruption of the illness and caregiving in caregiv- In order to understand the caregiver burden,
ers’ lives (Zarit et al., 1980, 1986). Studies we referred to the stress process model (Pearlin
showed that the subjective burden (in general et al., 1990; Yates et al., 1999), which has been
measured in terms of the caregiver’s subjective widely used to identify risk and protective fac-
perception of the impact of caregiving on his or tors for caregivers’ well-being. According to
her life in different domains) is a strong predic- this theoretical model, the objective burden (i.e.
tor of caregiver’s quality of life and psychologi- illness-related factors) and the background and
cal well-being, over and above the objective context characteristics of the caregiver (i.e.
burden (in general measured in terms of the gender, age, ethnicity, socio-economic status
number of hours the caregiver spends on car- and biopsychosocial history) are at the origin of
egiving and the number and kinds of tasks he or the subjective burden. Caregivers have personal
she is in charge of) (Braun et al., 2007; Haley and social resources that act as protective fac-
et al., 2003). tors and consequently moderate the effect of the
To date, empirical investigations on the stressors on possible negative outcomes.
informal caregiver of the cancer patient are still Individual coping and social support (i.e. spe-
relatively rare and mostly focused on advanced, cific instrumental and emotional support that
metastatic and palliative stages of cancer (e.g. the caregiver may receive from his close envi-
Braun et al., 2007; Grunfeld et al., 2004). ronment in the context of the illness) are the
Existing data show that in these situations, car- most studied resources to explain modulations
egiving is significantly linked with decreased in the caregiver burden in a variety of illnesses
psychological and physical well-being of the such as cancer, dementia or spinal cord injury.
caregiver, with problems such as depression, Studies have shown that efficient coping and
anxiety, excessive fatigue, sleep disturbance support are both related to a lower subjective
and chronic pain. Between 20% and 30% of burden and better psychological adjustment
caregivers meet the criteria for a psychiatric (Chiou et al., 2009; Papastavrou et al., 2009;
diagnosis (Baronet, 1999; Li et al., 2013; Rodakowski et al., 2012). Surprisingly, the gen-
Pitceathly and Maguire, 2003; Stenberg et al., eral quality of the relationship between the car-
2010). egiver and the patient has rarely been taken into
Few studies have so far investigated the account. In non-cancer diseases, a few studies
impact of non-metastatic breast cancer on have nevertheless shown that the caregiver’s

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Cairo Notari et al. 3

satisfaction with the relationship was signifi- criteria for patients were the following: diagnosis
cantly linked to the subjective burden: the of breast cancer, breast surgery required (mastec-
higher the quality of the relationship, the lower tomy or lumpectomy), ability to speak and read
the perception of burden (Quinn et al., 2009; French and being engaged in a couple relation-
Snyder, 2000; Steadman et al., 2007; Williamson ship. Eligible romantic partners were aged
and Shaffer, 2001). A recent study on caregivers ⩾18 years and were able to speak and read
of cancer patients entering home hospice care French. The study was proposed to 127 women:
found that the relationship quality significantly 97 (76.4%) agreed to participate and to ask their
predicted the spousal caregiver burden (Reblin romantic partner to participate as well. Sixty-one
et al., 2015). These findings strongly support partners (62.9%) agreed to enter the study. Seven
taking into consideration the quality of the rela- partners dropped out of the study at T2 (attrition
tionship in a model of stress and coping in car- rate of 11.5%). Seven partners were then
egiving for non-metastatic cancer patients. excluded from the analyses because of missing
The first aim of this study was to assess the data in the main variables. In order to compute
subjective burden of partners of women with analyses on the same participants at both time
non-metastatic breast cancer and its evolution points, we selected a final sample of 47 partners
over time. We thus considered two different who completed all the questionnaires.
phases: the active treatment phase (3 months Concerning the socio-demographic data of
post-surgery; T1 in the research design) and the the romantic partners, their mean age was
rehabilitation phase (12 months post-surgery; T2 53.7 years (standard deviation (SD) = 12.3) and
in the research design). We hypothesized that their socio-economic level was mainly (80.9%)
the subjective burden would decrease when middle to upper class (Hollingshead Index of
patients enter the rehabilitation phase (i.e. end of Social Position). The majority of them lived
active treatment). The second aim of this study with the patient (91.5%) and were married to
was to examine the unique contribution of cou- her (63.8%). The mean length of their couple
ple satisfaction to the subjective burden of relationship was 24.7 years (SD = 16.0). Only a
romantic partners of women with non-metastatic minority of partners (19.1%) had children
breast cancer. We hypothesized that higher cou- younger than 18 years old in the household.
ple satisfaction would be associated with a lower Concerning the patient’s oncological diagnosis,
subjective burden at both assessment points. In 10 (21.3%) had been diagnosed with in situ
accordance with the stress process model, we breast cancer and 37 (78.7%) with invasive
tested this hypothesis using the socio-demo- breast cancer (38.3% stage I, 29.8% stage II and
graphic data of the partner as the background 10.6% stage III). For type of surgery, 55.3% of
and context factors and using the medical and the women underwent mastectomy, 44.7%
psychological conditions of the patient as the lumpectomy and 29.8% axillary lymph node
primary stressor (i.e. objective burden). We also dissection (ALND). At T1 (3 months post-sur-
considered individual coping, social support and gery), 27.7% were undergoing chemotherapy,
couple satisfaction as resources that may moder- 55.3% radiotherapy and 61.7% hormonal ther-
ate the effect of caregiving stress and protect the apy. At T2 (12 months post-surgery), no women
partner from the subjective burden. were undergoing chemotherapy, only 1 woman
was undergoing radiotherapy and 80.9% of the
women were undergoing hormonal therapy.
Methods
Participants Procedure
Patients and their romantic partner were recruited Recruitment took place between September
from the Senology Unit of the University 2011 and December 2013. The referent nurse of
Hospital of Lausanne (Switzerland). Eligibility the Senology Unit proposed during pre-hospital

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4 Journal of Health Psychology 

consultation (1–2 weeks before surgery) that the to 5 (always). Items can be grouped into two
women take part in the research. Patients and main categories: functional and dysfunctional
their romantic partners received documentation coping. A summary score is computed as the
on the research and signed an informed consent mean of the functional coping score and the
form. Couples were asked to complete a set of inverse of the dysfunctional coping score. This
self-reported questionnaires at home at both score ranges from 1 to 5: the higher the score, the
time points. Two self-addressed stamped enve- higher the use of functional coping and the lower
lopes (one for the patient and one for the part- the use of dysfunctional coping (α T1 = .80; α
ner) were provided to participants, with the T2 = .76).
instructions to send the completed question- A short-form version of the Social Support
naires to the referent nurse within a month. The Questionnaire-6 (SSQ-6; Sarason et al., 1987)
study was approved by the Ethics Committee of was used to assess satisfaction with perceived
the University Hospital of Lausanne in July social support. This questionnaire contains six
2011. questions about social support in diverse
domains; romantic partners were asked to rate
their satisfaction with the support received in
Measures
each domain on 6-point Likert scales. A sum-
The Brief Symptom Inventory-18 (BSI-18; mary score of satisfaction was computed by cal-
Derogatis, 2001) was used to measure the psy- culating the mean of the six questions (α
chological distress of the patient. Eighteen T1 = .95; α T2 = .90). This score ranges from 1
items assess symptoms along three dimensions: to 6: the higher the score, the more the partners
depression, anxiety and somatization (six items were satisfied with perceived social support.
by dimensions). Each item is rated on a 5-point The Relationship Assessment Scale (RAS;
Likert scale from 0 (not at all) to 4 (very much). Hendrick, 1988) was used to measure relation-
A summary score of psychological distress is ship satisfaction of the romantic partner. Each
computed as the sum of the 18 items (α T1 = .93; of the seven items is scored on a 5-point Likert
α T2 = .92). This score ranges from 0 to 72: the scale from 1 (low satisfaction) to 5 (high satis-
higher the score, the higher the psychological faction). A summary score is computed by cal-
distress. culating the mean of the seven items (α T1 = .91;
A short-form version of the Zarit Burden α T2 = .92). This score ranges from 1 to 5: the
Interview-12 (ZBI-12; Bédard et al., 2001) was higher the score, the higher the partner’s satis-
used to measure the romantic partner’s subjec- faction about his couple relationship.
tive burden. This instrument consists of 12 A questionnaire specifically designed for the
items that are scored on a 5-point Likert scale study was used to collect the socio-demographic
ranging from 0 (never) to 4 (nearly always). A and medical data.
summary score is computed by calculating the
sum of the 12 items (α T1 = .83; α T2 = .77).
This score ranges from 0 to 48: the higher the Results
score, the greater the subjective burden per- Descriptive statistics for the study
ceived by the romantic partner.
The revised version of the Individual Coping
variables
Questionnaire (INCOPE-2R; Bodenmann, 2000) Concerning the partner’s level of subjective
was used to measure coping. This instrument burden, the mean total score of the ZBI-12 was
consists of a set of 21 items that describe differ- 9.5 (SD = 5.3) at T1 and 8.1 (SD = 5.3) at T2.
ent cognitive, emotional and behavioural reac- Concerning the partner’s resources (i.e. indi-
tions that people may adopt when facing a vidual coping, social support and couple satis-
stressful situation. Each of the 21 items is rated faction), the mean total score of the INCOPE-2R
on a 5-point Likert scale ranging from 1 (never) was 3.6 (SD = 0.3) at T1 and 3.7 (SD = 0.3) at

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Cairo Notari et al. 5

T2, indicating that partners generally use more to our second hypothesis, the partner’s couple
functional than dysfunctional individual cop- satisfaction was strongly associated with the
ing. The mean total score of the SSQ-6 was 5.4 level of subjective burden at T1 (r = −.76;
(SD = 0.9) at T1 and 5.4 (SD = 0.6) at T2, indi- p < .001) and T2 (r = −.68; p < .001): the higher
cating an overall high level of satisfaction with the couple satisfaction, the lower the subjective
perceived social support. Finally, the mean total burden reported by the partner. At T2, but not at
score of the RAS was 4.5 (SD = 0.5) at T1 and T1, satisfaction with perceived social support
4.5 (SD = 0.7) at T2, indicating that couple sat- was also related to subjective burden: the higher
isfaction in our sample was fairly high. the satisfaction with social support, the lower
Concerning the patient’s psychological dis- the subjective burden (r = −.39; p = .006). No
tress, the mean total score of the BSI-18 was significant association was found between sub-
14.3 (SD = 13.8) at T1 and 11.2 (SD = 9.0) at T2. jective burden and individual coping at either
T1 or T2.
Change in subjective burden over time Predictors of subjective burden.  Two hierarchical
In order to test our first hypothesis, we com- multiple regression analyses were performed to
pared the mean total score of the ZBI-12 at T1 examine the role of couple satisfaction in deter-
and T2. The results showed a statistically sig- mining the subjective burden at T1 and T2 (see
nificant difference (t(46) = 2.15; p = .037; paired Table 1). Results at T1 showed that age, which
t test): the level of subjective burden reported was entered at step 1, significantly explained
by the romantic partner decreased between 3 18% of the variance of subjective burden: the
and 12 months post-surgery. younger the partner, the higher the subjective
burden. The medical and psychological condi-
Couple satisfaction as predictor of tion of the patient (i.e. ALND and psychologi-
cal distress) introduced at step 2 accounted for a
subjective burden significant additional 26% of the variance of
Preliminary checks.  We assessed first which back- subjective burden: patients having undergone
ground and context factor (socio-demographic ALND (β = .36; p < .01) and patients having a
data of the partner) and primary stressors (medi- higher level of psychological distress (β = .40;
cal and psychological conditions of the patient) p  < .01) both significantly induce a higher level
were associated with subjective burden (see sec- of subjective burden. Couple satisfaction, indi-
tion ‘Participants’ for details about socio-demo- vidual coping and social support, introduced at
graphic and medical data). The level of subjective step 3, added a significant additional 29% of the
burden at T1 was significantly correlated (Pear- variance, but only the effect of couple satisfac-
son’s correlation) with the romantic partner’s age tion was significant (β = −.61; p  < .001): the
(r = −.42; p = .003), whether the patient underwent higher the couple satisfaction, the lower the
ALND (r = .37; p = .012) and the patient’s psy- subjective burden. The variables that stayed
chological distress (r = .49; p < .001). These three significant at step 3 were ALND, the patient’s
variables were thus selected and introduced into psychological distress and the partner’s couple
the regression models as predictors of subjective satisfaction. This final model explained 72% of
burden at T1. At T2, no socio-demographic or the variance of subjective burden.
medical variable was significantly correlated At T2, couple satisfaction, individual coping
with the subjective burden. Accordingly, none of and social support were introduced at step 1, but
these variables were tested in the regression only couple satisfaction was a significant pre-
model. dictor of subjective burden (β = −.67; p < .001):
the higher the couple satisfaction, the lower the
Bivariate links between study variables.  Results of subjective burden. The model explained 46% of
Pearson’s correlations showed that, according the variance of subjective burden.

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6 Journal of Health Psychology 

Table 1.  Hierarchical multiple regression analysis of ALND may be explained in terms of an
predicting romantic partner’s subjective burden at increase in the patient’s physical impairment.
T1 and T2 (n = 47). This type of surgery may indeed induce several
T1 T2 side effects such as pain, swelling, weakness
and trouble moving the arm, but also more
  Step 1 Step 2 Step 3 Step 1 severe problems such as lymphoedema
Age −.42** −.30* −.16   (Swenson et al., 2002). Patients are thus often
ALND .36** .30**   debilitated, preventing the use of their arm, and
Patient’s distress .40** .19*   became more dependent on the practical help of
RAS −.61*** −.67*** their partner. This result was in line with other
INCOPE-2R −.04 −.02 studies showing that increased physical impair-
SSQ-6 .03 −.01 ment in a patient is linked to greater caregiver
R2 .18 .44 .72 .46 burden (Pinquart and Sörensen, 2003). The link
ΔR2 .18** .26*** .29*** .46*** between the patient’s distress and the partner’s
subjective burden was not surprising. The liter-
ALND: axillary lymph node dissection; RAS: Relationship
Assessment Scale; INCOPE-2R: Individual Coping ature has indeed shown that among the many
Questionnaire (revised version); SSQ-6: Social Support tasks that the informal caregiver must assume,
Questionnaire (6-item short-form). providing emotional support proved to be the
*p < .05; **p < .01; ***p < .001. most time-consuming and difficult (Bakas
et al., 2001; Carey et al., 1991). In contrast, at
For all regressions, residual analyses revealed T2, no significant link was found between sub-
no outliers, homoscedasticity and normality of jective burden and the patient’s medical and
residuals. Predictors were not multi-collinear. psychological condition in bivariate and multi-
variate analyses. This could be explained by the
fact that at that time, the patients have finished
Discussion chemotherapy and radiotherapy. The end of
In this study, we assessed the subjective car- these treatments and the gradually physical
egiver burden in male partners of women with recovery from surgery marked the beginning of
non-metastatic breast cancer. The aims of the the rehabilitation phase, which is also accompa-
study were, on one hand, to assess the subjec- nied by a lower level of psychological distress
tive burden and its change over time and, on the in patients. This improvement in patient condi-
other, to examine the contribution of couple sat- tion was probably at the origin of the decrease
isfaction in moderating the impact of caregiv- in subjective burden reported by the partner
ing stress on the partner’s subjective burden. between T1 and T2.
The majority of romantic partners reported a Concerning the effect of couple satisfaction
subjective burden 3 months (i.e. active treat- on subjective burden, results of multivariate
ment phase, T1) and 1 year (i.e. rehabilitation analyses confirm our second hypothesis. Couple
phase, T2) after surgery; in accordance with our satisfaction, after the medical and psychological
hypothesis, subjective burden was significantly conditions of the patient were controlled for,
lower at T2. Results from multivariate analyses explained 29% and 46% of the variance of sub-
offer some details to better understand this jective burden at 3 and 12 months post-surgery,
decrease over time. During the active treatment respectively. This means that the negative
phase, the patient’s medical and psychological impact of caregiving largely depends on the
conditions were significant predictors of sub- quality of the relationship between the caregiver
jective burden. Indeed, we found that ALND and the care recipient, over and above the
and the patient’s psychological distress patient’s condition and regardless of the phase
explained approximately 26% of the variance of treatment. This result was in line with the few
of subjective burden at T1. The negative impact studies focusing on the caregiver–patient

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Cairo Notari et al. 7

relationship that showed that the quality of this This study has several limitations. The mod-
relationship was crucial in determining subjec- est sample size limits generalizability. The par-
tive burden. When the quality of the relationship ticipation rate of romantic partners was not high
was good, caregivers experienced less subjec- but is nonetheless satisfactory, considering that
tive burden even though an objective burden participants must complete questionnaires dur-
was present (Snyder, 2000; Steadman et al., ing the acute illness phase, as well as the great
2007). Starting with these results, we can con- difficulty in recruiting couples in psycho-oncol-
clude that subjective burden seems to have an ogy studies in which both the patient and the
important relational component. Characteristics partner need to agree to participate (Fredman
of satisfied couples may explain this effect. et al., 2009). A second limitation was that we
First, the partners of highly satisfied couples did not have a specific measure of care demands
normally reported an important sense of ‘we- (e.g. number of hours the partner spent on car-
ness’, namely a sense of unity (Gottman and egiving, number and kinds of tasks that the part-
Levenson, 1999; Reid et al., 2006). In the con- ner performed). Finally, several studies have
text of a serious illness, where the lives of both shown that caregiving may also have a positive
partners are likely to be affected, this translates impact on the caregiver. Indeed, caregiving
into the perception of the illness as a shared may be experienced as a challenge and may
stressor or a ‘we-disease’ (Kayser and Scott, induce feelings of pride, a sense of self-worth
2008), which involves both partners and not and rewards. It may also be accompanied by
only the patient. From this perspective, we can increased love, affection and commitment
imagine that caregiving is not perceived by the between the caregiver and the care recipient
healthy partner as an external imposition, but as (Carey et al., 1991; Lopez et al., 2005; Marks
the obvious consequence of the situation and the et al., 2002). It would thus be incorrect to con-
only thing to do to face the illness together. In sider caregiving only as a stressor linked to dis-
addition, according to the equity theory (Walster tress, fatigue and burden (Nijboer et al., 1998).
et al., 1978), when a couple faces a serious ill- This aspect would be interesting to integrate in
ness such as breast cancer, there is a change in further studies because it could have a protec-
the balance of give-and-take between partners tive effect on both the couple relationship and
(Cutrona, 1996). The healthy partner must take the partner’s psychological well-being.
on new caregiving roles and the exchange may Notwithstanding these limitations, this study
become more unidirectional (Kuijer et al., has shown that couple satisfaction is the factor
2004). In distressed couples, partners may feel that most explained the subjective burden in
inequitably treated and this feeling of inequity is romantic partners of non-metastatic breast can-
generally associated with increased distress. In cer patients during the first year after surgery. A
contrast, in satisfied couples, the imbalance is study of the subjective burden in the context of
not experienced as inequitable, but only as a a loving relationship thus seems to need to take
momentary transition (Buunk and VanYperen, into account the quality of the relationship
1991; Kuijer et al., 2001). because it can determine the perception of car-
Contrary to what was assumed in the stress egiving. From a clinical perspective, interven-
process model, no background and context tions aimed at helping romantic partners to
characteristics of the partner predicted subjec- better adjust to the illness and to improve their
tive burden. The effect of age, the only variable psychological well-being need to take into
that was found to be significantly correlated account the quality of the relationship. Reducing
with subjective burden at T1, lost its signifi- the partner’s distress by directly acting on the
cance when couple satisfaction was entered into objective burden, for example, by reducing car-
the regression model. In addition, no significant egiving tasks and providing practical support,
effect was found for individual coping and would certainly help. In the case of an illness
social support. that enters remission such as non-metastatic

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8 Journal of Health Psychology 

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Declaration of conflicting interests Buunk BP and VanYperen NW (1991) Referential
The author(s) declared no potential conflicts of inter- comparisons, relational comparisons, and
est with respect to the research, authorship and/or exchange orientation: Their relation to marital
publication of this article. satisfaction. Personality and Social Psychology
Bulletin 17: 709–717.
Funding Carey PJ, Oberst MT, McCubbin MA, et al. (1991)
Appraisal and caregiving burden in family
The author(s) disclosed receipt of the following finan- members caring for patients receiving chemo-
cial support for the research, authorship, and/or publi- therapy. Oncology Nursing Forum 18(8): 1341–
cation of this article: This study benefited from the 1348.
support of the Swiss National Centre of Competence Carretero S, Garcés J, Ródenas F, et al. (2009) The
in Research LIVES – Overcoming vulnerability: life informal caregiver’s burden of dependent peo-
course perspectives, which is financed by the Swiss ple: Theory and empirical review. Archives of
National Science Foundation. Gerontology and Geriatrics 49(1): 74–79.
Chiou CJ, Chang HY, Chen IP, et al. (2009) Social
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