Psychiatry Research 210 (2013) 1107–1115

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Psychiatry Research
journal homepage: www.elsevier.com/locate/psychres

Predictors of quality of life and caregiver burden among maternal

and paternal caregivers of patients with eating disorders
Josune Martín a,n, Angel Padierna b,d, Urko Aguirre a,d, Nerea González a, Pedro Muñoz c,
José M Quintana a,d
a
Research Unit, Galdakao-Usansolo Hospital, Barrio Labeaga s/n, Galdakao, 48960 Bizkaia, Spain
b
Department of Psychiatry, Galdakao-Usansolo Hospital, Barrio Labeaga s/n, Galdakao, 48960 Bizkaia, Spain
c
Department of Psychiatry, Ortuella Mental Health Center, Avenida del Minero n1 1, Ortuella, 48530 Bizkaia, Spain
d
Health Services Research on Chronic Diseases Network—REDISSEC, Spain

art ic l e i nf o a b s t r a c t

Article history: This prospective study investigated quality of life and caregiver burden of 244 parent caregivers of 113
Received 27 June 2012 Spanish patients with Eating Disorders (ED). One hundred eleven mothers and 70 fathers fulfilled the
Received in revised form inclusion criteria. ED patients completed the Hospital Anxiety and Depression Scale (HADS) and the
8 April 2013
Eating Attitudes Test-26. Caregivers completed the HADS, the Short Form-12 (SF-12), the Involvement
Accepted 30 July 2013
Evaluation Questionnaire-EU version, and the Anorectic Behaviour Observation Scale. Descriptive
statistics, ANOVA, Chi-square and Fisher's exact test were applied. Among mothers, anxiety and
Keywords: depression and patient age contributed to poorer quality of life. Caregiver variables that affected the
Caregiver burden for mothers were marital status, the mental subscale of the SF-12, and the mother's perception of
Eating disorder
the severity of her child's illness. Caregiver variables that affected the burden for fathers were the
Quality of life
caregiver's anxiety and the physical domain of the SF-12. Among mothers but not fathers, being married
Burden
was a protective factor of caregiver burden. Our findings suggest that mothers and fathers have different
perceptions of their quality of life and caregiver burden, and that mothers of patients with ED may be in
considerable need for extra psychosocial support.
& 2013 Elsevier Ireland Ltd. All rights reserved.

1. Introduction
Mental illness in a close relative can be stressful for family
members, particularly those who are also the patient's caregiver
(Schene, 1990; Szmukler et al., 1996; Baronet, 1999; Hunt, 2003).
Eating Disorders (EDs) pose special problems for families, as they
tend to persist over long periods. For patients with EDs, parents
are often the main caregivers and usually participate actively in
the treatment process (Zipfel et al., 1998; Nielsen and Bará-Carril,
2003; Steinhausen, 2009).
Caregivers of patients with chronic conditions often feel
burdened by the physical and mental stress of providing care
and worries about their loved one's health status (Platt, 1985).
Individuals caring for a patient with an ED are also exposed to
other factors that may influence their mental or emotional health
(Treasure, 2010). These include the unwillingness of many ED
patients to accept their illness, the outward signs of malnutrition
and resulting social stigmatisation, the daily struggles at meal
n
Correspondence to: Research Unit, 9th floor, Galdakao-Usansolo Hospital,
Barrio Labeaga s/n, Galdakao, 48960 Bizkaia, Spain. Tel.: +34 94 400 7105;
fax: +34 94 400 7132.
E-mail address: josune.martincorral@osakidetza.net (J. Martín).
times, and the frequent alterations in behaviour and mood that
often occur with EDs. Such stresses can affect a caregiver's Health-
Related Quality of Life (HRQoL), defined as a person's subjective
assessment of how a disease and its treatment affect his or her
physical, psychological, and social functioning and well-being
(Revicki et al., 2000). Caregiver burden refers to the problems,
difficulties, and adverse events that affect the life of an individual
who provides care to a patient (Platt, 1985). Family caregivers
experience this burden on both a practical and an emotional level
(Lowyck et al., 2004). Several studies have evaluated the impact on
burden of caring for subjects with chronic disorders (Roick et al.,
2006), including schizophrenia (van Wijngaarden et al., 2000;
Foldemo et al., 2005; Gutiérrez-Maldonado et al., 2005), Alzhei-
mer's disease (Bullock, 2004), obsessive–compulsive disorders
(Stengler-Wenzke et al., 2006), depression (van Wijngaarden
et al., 2004a), bipolar disorder (Reinares et al., 2006), multiple
sclerosis (Buhse, 2008), Parkinson's disease (Spliethoff-Kamminga
et al., 2003), cancer (Baider, 2003), stroke (Rigby et al., 2009) and
dementia (Etters et al., 2008). Caregiver burden associated with
EDs has also been evaluated (Graap et al., 2008a; Sepulveda et al.,
2008; Coomber and King, 2011; Padierna et al., 2012). Indeed,
some authors have found that family caregivers of ED patients
have higher levels of anxiety, depression, and perceived caregiving

0165-1781/$ - see front matter & 2013 Elsevier Ireland Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.psychres.2013.07.039
1108 J. Martín et al. / Psychiatry Research 210 (2013) 1107–1115
burden than caregivers of patients with other psychiatric illnesses
(Treasure et al., 2001; Graap et al., 2008b; Zabala et al., 2009).
Relatives of individuals with a mental illness tend to judge their
quality of life, especially their emotional well-being, significantly
worse than the general population, and female relatives tend to
find themselves more burdened when acting as a caregiver than
male relatives (Fleischmann and Klupp, 2004). In a review of the
association between gender and psychiatric morbidity, Yee and
Schultz found that the majority of studies on depression and
burden in caregiving found higher levels of both in female
caregivers when compared to male caregivers (Yee and Schulz,
2000). Some studies have found that female caregivers report
higher levels of caregiving burden than male caregivers (Bedard
et al., 2000; Harwood et al., 2000). Other studies have shown that,
in ED patients' families, mothers have higher levels of emotional
distress than fathers (Whitney et al., 2005; Kyriacou, et al., 2008).
Identifying factors that may predict caregiver burden and
quality of life among parental caregivers of ED patients could
improve integrated health care strategies for this type of illness.
A number of individual factors are known to determine
carers' perceptions of quality of life and caregiver burden (Turró-
Garriga et al., 2008). Specific factors that have been implicated
include aspects of the patient's illness and the carer's physical and
mental states (Baumgarten et al., 1992; Donaldson et al., 1998;
Burns and Rabins, 2000). In relation to age, burden is modulated
by the age. On the one hand, older caregivers show higher burden
because they have coexisted during more time with the patient
and the disorder (Caqueo-Urízar and Gutiérrez-Maldonado, 2006;
Babarro et al., 2004). On the other hand, there are studies that
have found an inverse relation of burden with age (Webb et al.,
1998). In relation to educational level, this is a variable that can
modulate the degree of burden experienced by the relatives
(Phelan et al., 1998; Czuchta and McCay, 2001).
The aim of our study was to evaluate quality of life and
caregiver burden among a sample of parents of patients with
eating disorders. We asked: Are there any differences between
mothers and fathers?, and What variables best predict quality of
life and caregiver burden among mothers and fathers caring for a
family member with an eating disorder?. The variables we
included in our study are those belonging to categories proposed
by Baronet (1999): demographic variables such as age or educa-
tional level, variables related to caregiver stress (psychological
status, quality of life, and caregiver burden), and variables related
to the disease, namely the caregiver's perception of the serious-
ness of the illness of his/her patient or the quality of life and
psychological status of the patient (Baronet, 1999; O’Rourke and
Tuokko, 2004; Turró-Garriga et al., 2008).
2. Methods
2.1. Study participants
We conducted a descriptive study of all patients diagnosed with, and treated
for, an ED in the Eating Disorders Outpatient Clinic of the Psychiatric Services at
one Hospital and one Mental Health Centre, both in Bizkaia, Spain. These
institutions, which serve a population of 300,000 inhabitants, are part of the
Basque Health Care Service, which provides free, unrestricted care to nearly 100% of
the population. Outpatients diagnosed with anorexia nervosa or bulimia nervosa
based on criteria established in the Diagnostic and Statistical Manual of Mental
Disorders, 4th edition (DSM-IV) (American Psychiatric Association, 1994), who
were between the ages of 16 and 65 years, were eligible for the study, To be
included, a patient's psychiatrist had to complete the clinical protocol and his or
her caregiver had to complete four questionnaires. Patients were excluded if they
had a malignant, severe organic disease, could not complete the questionnaires
because of language barriers, or did not give written informed consent to
participate in the study.
Caregivers were selected on the basis of being a family caregiver (mother or
father) for an outpatient diagnosed with an ED. According to criteria established by
Perlick et al. (2005) a family caregiver is defined as an individual who fulfils at least
3 of the following 5 criteria: (1) is a parent, partner, child, sibling, or other relative;
(2) maintains frequent contact with the patient; (3) provides significant financial
support to the patient; (4) is often present during the patient's treatment and is
aware of the severity of the patient's illness (i.e., accompanies the patient to
consultation, participates in consultations and therapy, supervises eating behaviour
at home, etc.); and (5) is the person whom the therapy team is asked to contact in
the event of an emergency. In our centres, caregivers receive professional counsel-
ling from clinicians to help them cope with their relative's ED.
Data collection started in 2007; 1 year follow-ups were conducted through
2008. Psychiatrists collaborating in the study informed their patients about the
objectives of the study and requested the participation of their primary caregivers.
Those who agreed to take part in the study received the questionnaires and the
informed consent form by mail. They were asked to return these by mail using an
enclosed, pre-stamped envelope. Caregivers who did not return the information
within 20 days were sent a reminder letter.
The same documents were mailed to participants 1 year after the first round of
information gathering. As before, those who did not return the information within 20
days were sent a reminder letter.
Family caregivers were included in the study if they provided written informed
consent and the patient for whom they were caring also agreed to participate.
Exclusion criteria for the caregivers were the same as for the patients.
2.2. Measures
The ED patients sociodemographic information was recorded from their
medical records.
All ED patients completed the Eating Attitudes Test (EAT-26) (Garner et al., 1982),
which assesses the behavioural and cognitive characteristics of ED patients. It
consists of 26 items and provides a total score between 0 and 76. Scores above 20
indicate the presence of behaviours or thoughts characteristic of ED individuals. It
has been validated in the Spanish population (Castro et al., 1991).
They also completed the Hospital Anxiety and Depression Scale (HADS). This
14-item instrument is used to screen for anxiety and depression in a nonpsychiatric
setting (Zigmond and Snaith, 1983). It includes 7 questions on anxiety and 7 on
depression, all scored on a 0–3 scale. A score of 0–7 on any subscale indicates the
absence of symptoms of anxiety or depression, a score of 8–10 indicates a
borderline level of symptoms of anxiety or depression, and scores of 11 or above
indicate the presence of symptoms of anxiety or depression. The validity and
reliability of the HADS have been confirmed (Quintana et al., 2003), and the scale
has been adapted and validated in a Spanish population (Herrmann, 1997).
In addition, each patient's psychiatrist recorded the severity of the patient's ED
by completing the Clinical Global Index Scale (CGI) (Guy, 1976).
Caregivers provided self-reported sociodemographic data, including age, gender,
marital status, level of education, and relationship to the patient. They also
completed four instruments to assess their quality of life, perception of caregiving,
mental health, and perception of the patient's illness. As did the patients, caregivers
completed the HADS. The three other instruments were:
The Involvement Evaluation Questionnaire EU Version (IEQ-EU). This self-rated
questionnaire assesses the consequences or burden of being a caregiver. A 27-item
total score can be computed, and items are scored on a 5-point Likert scale. The
IEQ-EU has been translated into, and validated in, Spanish (van Wijngaarden et al.,
2000) and shows good internal consistency and adequate test-retest reliability. It
has been used previously in studies of caregivers of patients with ED, schizo-
phrenia, and depression (van Wijngaarden et al., 2000; van Wijngaarden et al.,
2004b; Martin et al., 2011).
The Short-Form 12 (SF-12). This 12-item instrument is widely used to assess
Health-Related Quality of Life (HRQoL) (Ware et al., 1996). The SF-12 generates two
subscores regarding the individual's perceived health: the Mental Component
Summary Scale (MCSS-12) and the Physical Component Summary Scale (PCSS-12).
A score above 50 in a summary scale indicates a positive perception of health, a
score below 50 indicates a negative perception. We used a version of the SF-12 that
has been validated in Spanish (Gandek et al., 1998).
The Anorectic Behaviour Observation Scale (ABOS) (Vandereycken, 1992). This
questionnaire is used to evaluate a patient's eating behaviour based on information
provided by his or her caregiver. The ABOS consists of 30 items, each with three
response options (scored as 0–2). The total score can range from 0 to 60, and is
divided into three domains: concern about diet, bulimic behaviour, and hyper-
activity. The higher the total score, the greater the patient's pathology. The ABOS
has been translated into Spanish (Instituto Nacional de la Salud, 1995).
2.3. Data analysis
An exploratory descriptive analysis of the sample was performed using mean
and standard deviations for continuous variables (age and scores of the caregivers)
and frequencies and percentages for qualitative data. To determine differences
between categorical caregivers' sociodemographic characteristics and the type of
caregiver (mother/father), we used the Chi Square or Fisher's Exact Test. For the
 J. Martín et al. / Psychiatry Research 210 (2013) 1107–1115 1109

mean age comparison between mothers and fathers, the nonparametric Wilcoxon
test was performed.
The outcomes of this study were the baseline measurements of the following
scales: physical and mental component summary scales of the SF-12 questionnaire
(PCSS-12 and MCSS-12, respectively); HADS anxiety and depression scales; and the
total IEQ-EU score. Scores obtained in these outcomes were computed according to
caregiver type and compared by means of the nonparametric Wilcoxon test.
To identify potential predictors of the various scale scores, we conducted a
univariate analysis. The Wilcoxon nonparametric test was used for the mean
comparison. In addition, Pearson's correlation coefficients were calculated to test
significant associations between each of the continuous predictors and the out-
come variables. Finally, we performed a multivariable analysis using General Linear
Models (GLM). Predictors with a p value o 0.20 were included in the multivariable
analysis. In each model, we assessed the degree of variability explained by the final
multivariable model computing the R-square. This was stratified by type of
caregiver.
All statistical analyses were performed using SAS System for Windows,
9.2 release (SAS Institute Inc., Cary, NC, USA). Figures were developed using R
v2.12. version. p values o 0.05 were considered statistically significant.

3. Results
Caregivers and ED patients

recruited The study sample included 113 ED patients and 181 caregivers
(111 mothers and 70 fathers) who fulfilled the inclusion criteria
and completed all the questionnaires (Fig. 1).
The vast majority (98.25%) of ED patients were female, with a
mean age of 23.16 years (S.D. ¼ 7.14). The diagnosis was anorexia
Caregivers who fulfilled ED patients who nervosa for 47.79% of the patients, bulimia nervosa for 19.47%, and
all inclusion criteria fulfilled all inclusion Eating Disorder Not Otherwise Specified (EDNOS) for 32.74%. The
criteria
n= 181 n= 113
ED was severe in 32.74% of the patients (Table 1). Among patients,
63.64% exceeded the HADS cut-off score of 11 for anxiety and
22.22% exceeded the same cut-off for depression. Among care-
givers, 39.45% of the mothers and 10% of the fathers exceeded the
Mothers Fathers cut-off for anxiety (p o0.0001), while 16.51% of the mothers and
n= 111 n= 70
1.43% of the fathers exceeded the cut-off for depression (p ¼0.002).
In the MCSS-12, 72.83% of the mothers and 56.06% of the fathers
Fig. 1. Caregivers and patients flow chart. presented lower score (p ¼0.03). In the PCSS-12, 32.61% of the

Table 1
Sociodemographic and clinic characteristics of eating disorder patients and their caregivers according to the caregiver–parent relationship.

ED patient variables Total patients (n¼ 113)

n (%)

Gender
Female 111 (98.25)
Agen 23.16 (7.14)

Diagnostic
AN 54 (47.79)
BN 22 (19.47)
EDNOS 37 (32.74)

CGI
Mild 38 (33.63)
Moderate 38 (33.63)
Severe 37 (32.74)

EAT-26 total score

(o 20) 34 (34.34)
(Z 20) 65 (65.66)

Caregiver variables All caregivers (n¼181) Mothers (n¼ 111) Fathers (n¼70) p Value
n (%) n (%) n (%)
n
Age 53.38 (7.98) 52.36 (7.95) 55 (7.79) 0.009
Marital status 0.02
Single 2 (1.10) 1 (0.90) 1 (1.43)
Spouse/partner 158 (87.29) 91 (81.98) 67 (95.71)
Divorced 10 (5.52) 8 (7.21) 2 (2.86)
Widow(er) 11 (6.08) 11 (9.91) 0 (0.00)

Educational level 0.06

Primary education 84 (47.46) 57 (53.27) 27 (38.57)
Secondary education 35 (19.77) 22 (20.56) 13 (18.57)
Higher education 58 (32.77) 28 (26.17) 30 (42.86)

Living with the patient 0.24

Yes 155 (86.59) 97 (88.99) 58 (82.86)
No 24 (13.41) 12 (11.01) 12 (17.14)
Contact with patient 0.02
r 32 h/week 98 (56.0) 52 (49.06) 46 (66.67)
Z 32 h/week 77 (44.0) 54 (50.94) 23 (33.33)
ABOS totaln 21.52 (10.40) 22.03 (10.33) 20.70 (10.53) 0.44
HADS-Anxietyn 8.11 (4.33) 9.44 (4.43) 6.05 (3.25) o 0.0001
HADS-Depressionn 5.72 (3.86) 6.62 (4.13) 4.31 (2.93) 0.0002

Note. nmean (standard deviation). n (%)¼ sample size (percentage). HADS: The Hospital Anxiety and Depression Scale. ABOS: Anorectic Behaviour Observation Scale.
1110 J. Martín et al. / Psychiatry Research 210 (2013) 1107–1115

mothers and 25.76% of the fathers presented lower score (p ¼0.35).
Means and standard deviations, as well as medians of the SF-12
and IEQ-EU scores for each type of caregiver are presented in
Table 2, and Fig. 2a and b, respectively.
Caregiver scores on the SF-12 and IEQ-EU are detailed in
Table 3 according to univariate analysis of the caregivers' and
patients' sociodemographic and clinical variables. Lower scores on
the PCSS for mothers were associated with the following care-
givers' variables: older caregivers' age (p ¼0.006), higher scores in
the HADS anxiety and depression subscales (p o0.0001 on both),
and higher caregiver scores on the ABOS (p ¼0.002) and the IEQ-
EU (p ¼0.002). Lower PCSS scores for mothers were also associated
with patients' age (p ¼0.002) and CGI. No variables were statisti-
cally significant for fathers.
Among mothers, lower MCSS scores were associated with
higher HADS anxiety and depression subscale scores (p o0.0001
on both) and higher caregiver scores on the ABOS (p ¼0.004) and
on the IEQ-EU (p o0.0001). Among fathers, lower MCSS scores
were associated with higher HADS anxiety and depression sub-
scales scores (p o0.0001 and 0.0002 respectively) and higher
caregiver score on the ABOS (p ¼ 0.04).
Among mothers, higher scores on the IEQ-EU were associated
with higher caregivers' HADS anxiety and depression subscale
scores (p o0.0001 on both) as well as higher caregiver scores on
the ABOS (p o0.0001), the PCSS (p ¼0.002), and the MCSS
(p o0.0001). Higher IEQ-EU scores for mothers were associated
with higher scores in the patients' anxiety and depression
Table 2
Baseline mean IEQ-EU and SF-12 scores and standard deviations by caregiver
relationship.
Caregiver All caregivers
variables (n¼ 181)
x (S.D.)
IEQ-EU total 27.35 (13.75)
MCSS-12 44.62 (10.29)
PCSS-12 50.83 (8.07)
Note. x ¼ mean; SD ¼ standard deviation. MCSS-12: SF-12 Mental component
summary. PCSS-12: SF-12 Physical component summary. IEQ: Involvement Evalua-
tion Questionnaire.
100
subscales HAD (p ¼0.002, and p o0.001, respectively) and higher
patient EAT scores (p ¼0.001). Among fathers, higher IEQ-EU
scores were associated with older caregiver age (p ¼ 0.02), higher
HADS anxiety and depression subscale scores (p o0.0001, p¼ 0.02,
respectively), higher caregiver scores on the ABOS (p o0.0001),
and older patient age (p ¼0.03).
The results of the multivariate analysis for the SF-12 are
presented in Table 4. Predictive variables for mothers' poorer
mental quality of life (as measured by the MCSS) included high
HADS anxiety and depression subscale scores and younger patient
age. For fathers, predictive variables for poorer mental quality of
life included HADS score (probability of case in depression).
Among mothers, predictive values for poorer physical quality of
life (measured by the PCSS) were a high score in the HADS anxiety
domain and older patient age and no variable was statistically
significant for fathers.
The results of the multivariate analysis for the IEQ-EU are
presented in Table 5. Among mothers, predictive values for a high
level of caregiver burden included marital status, low score on the
MCSS, high score in the ABOS, and high level of patients' depres-
sion. Among fathers, predictive values for a high level of caregiver
burden included a high caregiver score in the HADS anxiety
domain and a low score on the PCSS.
4. Discussion
This study evaluated quality of life and caregiver burden among
parent caregivers of patients with ED and identified factors that
may predicts these measures. We found that mothers and fathers
who care for a child with ED have different perceptions of their
quality of life and caregiver burden. These results support the
Mothers Fathers p Value hypothesis that females caregivers of individuals with a chronic
(n¼111) (n¼70)
illness such as an ED experience greater burden and poorer quality
x (S.D.) x (S.D.)
of life than men (McWilliams et al., 2007).
29.51 (14.45) 23.94 (11.89) 0.004 Mothers caring for a child with an ED were more likely to have
41.76 (11.42) 48.62 (6.70) o 0.001 symptoms of anxiety and depression than fathers. Among
50.10 (8.70) 51.84 (7.05) 0.32 mothers, 39.45% had symptoms of anxiety and 16.51% had symp-
toms of depression, compared with 10% and 1.43% of fathers,
respectively. The differences were statistically significant for both
anxiety and depression. These rates are higher than in the general

Type of caregiver Type of caregiver

Physical (PCS-12) and Mental (MCS-12) Component Summary

100

Mother Mother
Father Father
90

90
Scales of the SF-12 Questionnaire (0-100)

Total Score of the IEQ-EU Questionnaire

80

80
70

70
60

60
50

50
40

40
30

30
20

20
10

10
0

PCS-12 MCS-12

Fig. 2. a. Box-plot of SF-12 score by caregiver relationship. b. Box-plot of IEQ-EU score by caregiver relationship.
Table 3
Univariate analysis of the caregivers' SF-12 and IEQ-EU scores according to caregiver and patient sociodemographic and clinical variables.

Caregiver variables PCSS-12 MCSS-12 IEQ

Mothers Fathers Mothers Fathers Mothers Fathers

x (S.D.) p Value x (S.D.) p Value x (S.D.) p Value x (S.D.) p Value x (S.D.) p Value x (S.D.) p Value

Agea  0.28 0.006  0.23 0.07 0.16 0.12 0.04 0.75 0.03 0.75 0.27 0.02

Educational level 0.79 0.90 0.78 0.14 0.16 0.25

Primary education 50.39 (8.34) 51.36 (7.39) 42.20 (11.05) 50.16 (6.45) 31.78 (12.97) 27.07 (13.47)
Secondary education 48.38 (10.39) 54.24 (2.86) 39.84 (12.16) 50.61 (6.85) 26.45 (12.25) 18.94 (7.85)
Higher education 50.19 (8.67) 51.27 (7.90) 41.68 (11.94) 46.46 (6.58) 27.83 (18.49) 23.39 (11.50)

Contact with patient 0.73 0.48 0.12 0.78 0.11 0.29

J. Martín et al. / Psychiatry Research 210 (2013) 1107–1115

r32 h/week 50.50 (8.79) 52.24 (7.36) 43.68 (11.26) 48.60 (6.74) 27.56 (14.90) 22.44 (10.85)
Z32 h/week 49.74 (8.92) 51.45 (6.446) 40.19 (10.86) 48.54 (7.08) 31.63 (14.29)
HADS-anxietya  0.41 o 0.0001  0.14 0.28  0.67 o 0.0001  0.46 0.0001 0.48 o 0.0001 0.57 o0.0001
HADS-depressiona  0.42 o 0.0001  0.10 0.41  0.75 o 0.0001  0.45 0.0002 0.47 o 0.0001 0.29 0.02
ABOS totala  0.32 0.002  0.19 0.13  0.30 0.004  0.25 0.04 0.52 o 0.0001 0.47 o0.0001
IEQ-EU totala  0.32 0.002  0.19 0.12  0.42 o 0.0001  0.20 0.12 – –
PCSS-12 (SF-12)a – – – –  0.32 0.002  0.19 0.12
MCSS-12 (SF-12)a – – – –  0.42 o 0.0001  0.20 0.12
Patient variables
Agea  0.33 0.002  0.24 0.06 0.18 0.08 0.11 0.36 0.07 0.50 0.26 0.03

CGI 0.02 0.44 0.24 0.18 0.14 0.07

Mild 48.74 (8.96) 50.48 (8.43) 43.57 (13.75) 50.04 (5.57) 26.29 (14.84) 19.51 (7.63)
Moderate 52.53 (7.79) 52.88 (6.35) 40.36 (10.98) 49.54 (6.05) 28.78 (12.16) 22.50 (10.21)
Severe 48.89 (8.87) 51.58 (6.93) 41.04 (8.57) 46.55 (7.97) 33.49 (15.38) 28.75 (14.61)
HADS-anxietya – – – – 0.31 0.002 0.03 0.81
HADS-depressiona – – – – 0.43 o 0.001 0.04 0.74
EAT-26 total scorea – – – – 0.33 0.001 0.15 0.24

Note. x (S.D.): mean (standard deviation).

a
Pearson's r: Pearson's correlation coefficient for continuous variables only. MCSS-12: SF-12 Mental component summary. PCSS-12: SF-12 Physical component summary. HADS: The Hospital Anxiety and Depression Scale.
ABOS: Anorectic Behaviour Observation Scale. IEQ: Involvement Evaluation Questionnaire. CGI: clinical global index. (–): n¼ 1; –: n¼ 0; -: not included in the model. The caregivers' variables: “Marital status”, “Living with the
patient”, and the patients' variables of PCS-12 and MCSS-12: “Diagnosis”, and he caregivers' variable: “Living with the patient” and “Marital status” of IEQ-EU are omitted from the table as results were not statistically significant
(p4 0.20).

1111
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population, with anxiety at 6% and mood disorders at 4.2% (Alonso
et al., 2004). Several previous studies of mothers and fathers as
caregivers found that mothers had poorer emotional health than
fathers (Dockerty et al., 2000; Kyriacou et al., 2008). It is possible
that mothers adopt a more emotional coping style than fathers or
other caregivers, which may lead to greater stress (Whitney et al.,
2007). The lower impact on fathers could also be due to their
lower involvement in practical care roles, or because their coping
style is aimed more towards problem solving (Kyriacou et al.,
2010).
Our study indicates caring for an ED patient is associated with a
low score in the mental component of the SF-12 among mothers,
suggesting a significant detrimental effect on their mental health
(Martin et al., 2011). We also observed that mothers demonstrated
lower quality of life in the mental domain than fathers. This is
consistent with findings of Guethmundsson and Tomasson (2002),
who observed that mothers of children with psychiatric problems
presented with poorer quality of life than the general population.
We observed that the burden of caring for a child with ED was
significantly greater for mothers than for fathers. These results are
consistent with previous studies that have found that women
caregivers are more emotionally involved with the illness (Stern
et al., 1999), whereas men tend to distance themselves (Morris
et al., 1991; Dancyger et al., 2005). This may explain why female
caregivers experience poorer health-related quality of life, greater
caregiver burden and distress, and more clinically significant
alterations in physical and mental health than male caregivers
(Platt, 1985; Szmukler et al., 1996; Baronet, 1999; Revicki et al.,
2000; McWilliams et al., 2007).
Different predictors were identified for maternal and paternal
quality of life and caregiver burden. In terms of patient variables,
patient age was associated with quality of life and caregiver
burden among mothers, but not fathers. The older the patient,
the better the mother's quality of life was in the mental domain,
but the worse it was in the physical domain. Patient depression
was another predictor. Greater depression in patients was
reflected in greater perception of caregiver burden in mothers
and fathers (Whitney et al., 2005). No patient variable was
predictive of paternal quality of life and caregiver burden.
In relation to the caregiver variables, marital status and quality
of life in the mental domain affected mothers' perception of
caregiver burden, while anxiety and quality of life in the mental
domain affected fathers' perception of caregiver burden. The
patient's overall severity of symptoms as manifested by the ABOS
score was another important predictor of the perceived burden of
caregiving on mothers, a finding that has been observed in
previous studies (Ohaeri, 2001; Chakrabarti and Gill, 2002;
Hooker et al., 2002; Miyamoto et al., 2002; Wittmund et al.,
2002; Wolthaus et al., 2002). However, this suggests that the
perception of ED symptoms by maternal caregivers was more
important than the actual behaviour exhibited by the patient or
than the medical opinion of the treating doctor in terms of the
caregiver's perceived worry and burden. For fathers, predictors of
quality of life and caregiver burden were their level of anxiety,
depression, and quality of life in the physical domain. However, we
have found more predictors of quality of life and burden for
mothers: anxiety, depression, quality of life, specifically the mental
area, and the perception of the severity of the patient, and
patients' age and depression. In addition, being married was a
protective factor with regard to caregiver burden for mothers, but
not for fathers. This suggests that, when it comes to caregiving,
mothers value the support provided by their partner more than
fathers.
Research has consistently shown that mothers are overwhel-
mingly more involved than fathers in child care (Connell and
Goodman, 2002). One way in which paternal caregivers differ from
maternal caregivers is in their respective approaches to the
caregiving task. Men tend to regard the burden of giving care as
objective, instrumental, and practical, whereas women take a
more subjective approach (Gilbar, 1999). The differences between
mothers and fathers may be a reflection of the general finding that
women report more physical and psychological complaints and a
lower quality of life (O’Rourke and Tuokko, 2004) and psycholo-
gical well-being than men (Bedard et al., 2000). Other explana-
tions of these differences are that mothers often have the main
responsibility for the child's care (von Essen et al., 2004), that
women may be perceived as more suitable for the caregiving role
and feel a greater obligation to fulfil this role (Bedard et al., 2005),

Table 4
Multivariate analysis of caregivers' SF-12 mental and physical summary scale scores.

MCSS-12 PCSS-12

Mothers Fathers Mothers Fathers

Beta (s.e.) p Value Beta (s.e.) p Value Beta (s.e.) p Value Beta (s.e.) p Value

Intercept 33.56 (4.95) o 0.0001 47.93 (1.93) o 0.0001 63.69 (2.97) o 0.0001 55.35 (3.11) o 0.0001
Caregiver variables
Anxiety (HADS)
(r 7) Reference – Reference Reference
(8–10)  2.99 (2.40) 0.22 –  3.99 (1.94) 0.04 1.94 (2.20) 0.38
(Z 11)  5.91 (2.52) 0.02 –  9.61 (1.74) o 0.0001  4.16 (2.78) 0.14

Depression (HADS)
(r 7) Reference Reference – –
(8–10)  5.36 (2.38) 0.03  7.10 (1.94) 0.0005 – –
(Z 11)  15.65 (2.79) o 0.0001  2.14 (6.33) 0.74 – –
IEQ-EU total  0.14 (0.07) 0.05 –

Level of education
Primary education – 3.37 (1.65) 0.05
Secondary education – 4.03 (2.14) 0.07
College or above – Reference
Patient variables
Patient age 0.37 (0.13) 0.004 –  0.47 (0.11) o 0.0001  0.25 (0.13) 0.05
R2 58.91% 24.75% 37.02% 13.96%

Note. MCSS-12: SF-12 Mental component summary. PCSS-12: SF-12 Physical component summary. HADS: The Hospital Anxiety and Depression Scale. IEQ-EU: Involvement
Evaluation Questionnaire-EU version. -: not included in the model. R2: Explained variance.
 J. Martín et al. / Psychiatry Research 210 (2013) 1107–1115 1113

and that as men participate in the caregiving role, which has not
traditionally been a male role, they gain satisfaction from it (Kim
et al., 2007).
Key strengths of our study include the large sample of parent
caregivers of Spanish patients with eating disorders, the collection
of data using standardized questionnaires that cover a wide range
of the aspects of the perception of health and caregiver burden,
including the influence of the patients' health on caregiving
quality of life and burden, and the evaluation of the both
caregivers' and patients' predictor factors.
One limitation of our study is that it included only family
caregivers of patients attending a dedicated ED outpatient care
programme, in which all family caregivers received information
and support regarding their relative's eating disorder. Caregivers of
hospitalised patients or patients with more severe EDs than those
in our study could experience a greater burden of caregiving. The
same can be said for caregivers who do not receive support to help
them improve their skills for coping with caregiving and their
relative's disorder. Another limitation is that we did not examine
additional factors that may account for variations in caregivers'
experience of quality of life and burden, such as level of satisfac-
tion with other aspects of life. That should be explored in future
studies. Another limitation was that we assessed caregivers and
patients at only one point in time, which did not allow us to
observe changes in HRQoL or caregiver burden over time.
5. Clinical implications
Our findings indicate that the demands of caring for a child
with an ED takes a greater toll on mothers than fathers. One
practical implication of these findings is that it is important to
include a patient's family in the initial evaluation of the ED.
Mothers psychological wellbeing may be compromised by
demands of the caregiving role, and thus may benefit from more
services. Further research could suggest what types of services
these parents need and whether interventions should be different
for mothers and fathers. The better a parent's mental and physical
health, the better he or she will be able to care for his or her child.
Acknowledgements
This study was partly funded by the Carlos III Health Institute
(Project PI06/0921 The caring experience and its impact on the
quality of life of ED patient caregivers. A follow-up study, awarded
to principal investigator Angel Padierna). We also thank the
Research Committee of the Galdakao-Usansolo Hospital for the
help in editing this article. The authors also acknowledge editorial
assistance provided by Patrick Skerrett. We are most grateful to
the individuals with eating disorders and their caregivers who
collaborated with us in our research.

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