2018 Zika_pesquisa sobre saúde mental de pais de crianças com ZIKA

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Journal of Child and Family Studies
 
ISSN 1062-1024
Volume 27
Number 4
 
J Child Fam Stud (2018) 27:1207-1215
DOI 10.1007/s10826-017-0969-0
Mental Health of Parents of Children with
Congenital Zika Virus Syndrome in Brazil
Luana Elayne Cunha de Souza, Tiago
Jessé Souza de Lima, Erlane Marques
Ribeiro, André Luiz Santos Pessoa,
Thamyres Costa Figueiredo, et al.
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Journal of Child and Family Studies (2018) 27:1207–1215
https://doi.org/10.1007/s10826-017-0969-0
ORIGINAL PAPER
Mental Health of Parents of Children with Congenital Zika Virus
Syndrome in Brazil
Luana Elayne Cunha de Souza1 ● Tiago Jessé Souza de Lima1 ● Erlane Marques Ribeiro2,3 ●
André Luiz Santos Pessoa2 ● Thamyres Costa Figueiredo1 ● Luiza Barbosa Porto Lima1
Published online: 1 February 2018
© Springer Science+Business Media, LLC, part of Springer Nature 2018
Abstract
This study aims to analyze the potential impact of taking care of a child with congenital Zika virus syndrome (CZS) on the
mental health of parents. Specifically, three objectives were formulated: (a) to assess the level of mental health of the parents;
(b) to examine the influence of subjective well-being and fatigue as predictors of parents’ mental health; and (c) to identify
the impact of sociodemographic variables on parents’ mental health. Sixty-nine mothers (Mage= 26.38; SD= 6.23) and 17
fathers (Mage= 31.41; SD= 7.57) of children diagnosed with CZS took part in this study. They answered a questionnaire
containing measures of positive and negative affects, life satisfaction, fatigue, mental health, as well as sociodemographic
questions. The results indicated that approximately 7% of the participants had low levels of mental health and probable
emotional disorder. In addition, higher levels of fatigue and negative affects and lower levels of life satisfaction significantly
predict a lower level of mental health. Finally, comparative analysis showed significant differences between fathers and
mothers: mothers reported experiencing fewer positive and more negative affects, a lower level of satisfaction with life, a
higher level of fatigue and worse mental health. In summary, this article presents an overview of the mental health of
mothers and fathers of children with CZS and points the way to devising strategies for psychological intervention that
promote the adaptation of parents to this kind of developmental disability in the family.
Keywords Parents ● Mental health ● Fatigue ● Microcephaly ● Zika virus congenital syndrome
Introduction
The spread of the Zika virus in Brazil occurred concurrently
with a considerable increase in the number of live newborns
with microcephaly, a congenital malformation in which the
brain does not develop properly (Vargas et al. 2016). Sev-
eral recent studies based on strong clinical, epidemiologic,
and laboratory evidence have indicated the existence of a
causal relationship between Zika virus infection and con-
genital microcephaly and other serious brain anomalies
(Géradin et al. 2017; Krauer et al. 2017; Miranda-Filho
et al. 2016; Moore et al. 2016). According to Moore et al.
(2016), this constellation of anomalies that is both
consistent and unique is called congenital Zika virus syn-
drome (CZS). CZS can lead to several alterations, the most
frequent being delayed neuropsychomotor development,
cerebral palsy, epilepsy, difficulty in swallowing, visual
system anomalies and hearing loss, as well as behavioral
disturbances (Eickman et al. 2016).
Congenital Zika virus syndrome, as well as other
developmental disabilities such as cerebral palsy (Cheshire
et al. 2010), autism spectrum disorder (Giallo et al. 2001)
and Down syndrome (Van der Veek et al. 2009), has several
social implications that affect family dynamics and are
potential source of psychological distress for parents
because of the uncertainty regarding the developmental
outcome of their children (Oliveira et al. 2016). Addition-
ally, children with developmental disabilities have multiple
care needs that go beyond those of children of the same age
with typical development, and consequently require greater
involvement of parents in their care (Guillamon et al. 2013).
In this sense, several studies have been conducted in
recent decades to evaluate the consequences that caring for
children with developmental disabilities have on the mental
* Tiago Jessé Souza de Lima
tiago.souzalima@hotmail.com
1 University of Fortaleza, Fortaleza, Ceará, Brazil
2 Hospital Infantil Albert Sabin, Fortaleza, Ceará, Brazil
3 Faculdade de Medicina UNICHRISTUS, Fortaleza, Ceará, Brazil
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health of parents (Giallo et al. 2013; Cheshire et al. 2010).
These studies have focused mainly on maternal and paternal
care for children with cerebral palsy, autism spectrum dis-
order, and Down syndrome. In general, they have shown
that parents of children with developmental disabilities
experience, for example, lower psychosocial well-being
(Cheshire et al. 2010; Vander Veek et al. 2009), lower
quality of life (Guillamon et al. 2013), in addition to higher
levels of fatigue (Garip et al. 2016), anxiety and depression
(Gatzoyia et al. 2014) and stress (Dabrowska and Pisula
2010), compared to parents of children with typical
development.
In relation to CZS, an initial study carried out by Oliveira
et al. (2016) sought to compare levels of anxiety, depres-
sion, and quality of life among nine mothers of newborns
with CZS and 20 mothers of babies with typical develop-
ment. The authors observed in both groups high levels of
anxiety and normal levels of stress, and the groups did not
differ significantly in these two factors. Regarding quality
of life, however, the mothers of children with CZS pre-
sented significantly lower scores in the psychological
domain, whereas in the physical, social and environmental
domains there were no significant differences. It should be
noted that data from this study were collected 24 h after the
birth of the child, which may indicate the psychosocial
consequences of the diagnosis of CZS, not considering the
period of adaptation to the new situation that often tests the
resources of parents and family as a whole in dealing with
changes in their daily activities (Guillamon et al. 2013). It is
possible that the differences in mental health between par-
ents of children with CZS and parents of children with
typical development will intensify over time with the
growth of the child. Besides the study of Oliveira et al.
(2016), to the best of our knowledge no other studies have
been performed to evaluate the mental health of parents
having children with CZS.
Although the studies described above have focused
predominantly on psychosocial distress (e.g., anxiety,
depression and stress), they have neglected the positive
aspects of individuals. A new movement in positive psy-
chology, on the other hand, suggests that in order to get a
complete picture of mental health, positive psychosocial
well-being should also be evaluated (Diener and Chan
2011). Subjectivewell-being (SWB) can be understood as a
fully functioning condition of an individual, referring not
only to the absence of disease, but also to a state of inner
satisfaction in relation to either oneself or the surrounding
environment (Ryan and Deci 2000).
According to Diener and Chan (2011), SWB refers to
people’s evaluations of their lives, which can be judgments
such as life satisfaction, and evaluations based on feelings,
including positive and negative affects. Life satisfaction
refers to a positive cognitive assessment of life as a whole,
while positive/negative affects express the frequency of
positive/negative emotions experienced by the individual
(Woyciekoski et al. 2012). From this perspective, people
can subjectively interpret life situations and experiences in a
positive or negative way, influencing the evaluation of their
own lives. In this way, the subjective interpretation of
events is predominantly influenced by SWB, going beyond
the objective factors of biological or mental health. In other
words, in a particular instance an individual, although under
pressure or suffering from illness, can actually feel happy
(Woyciekoski et al. 2012). SWB is a relevant indicator of
mental health and is relatively stable over time, presenting
cumulative influences on general health (Diener and Chan
2011). Therefore, assessing how parents evaluate their life
is an important factor in understanding their mental health,
and consequently, is a strong indicator of their motivation to
take care of their children.
Among the studies that have looked at parents of chil-
dren with developmental disabilities, we found none that
assessed the subjective well-being of these parents,
although some researchers have tried to evaluate the rela-
tionship between care and the parents’ well-being. While the
majority of these studies interpret wellness from a psycho-
logical perspective, with well-being measured by negative
psychological aspects such as anxiety and depression, the
results indicate that mothers of children with cerebral palsy
(CP) or with autism spectrum disorder (ASD) experience
greater stress, anxiety, and depression (Barlow et al. 2006;
Giallo et al. 2013; Pozo et al. 2014).
Another study was carried out by Cheshire et al. (2010)
in which they evaluated anxiety, depression, and satisfac-
tion with life and aimed to compare the psychosocial well-
being of parents of children with cerebral palsy and parents
of children with typical development. They observed that
the parents of children with CP had significantly lower life
satisfaction and higher levels of anxiety and depression,
suggesting an association between CP child care and a
lower level of psychosocial well-being. In another study, in
which a diary method was adopted to examine the experi-
ences of parents of children with a heterogeneous group of
developmental disorders, Seltzer et al. (2009) found that the
parents of children with developmental disorders had higher
levels of stress and had more negative affects compared to
parents of children without disorders. On the other hand,
these authors did not observe differences in terms of daily
time use or positive affect experiences. However, for par-
ents of children with disorders, time spent with the child
was associated with more negative affects compared to
parents of children without disorders.
According to Giallo et al. (2013), another aspect that has
the potential to affect the mental health of parents of chil-
dren with developmental disabilities is fatigue. Unlike
tiredness, which is usually relieved through rest, fatigue has
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been defined as a persistent feeling of physical and mental
exhaustion that is not necessarily caused by exertion and is
not easily relieved through rest (Giallo et al. 2013).
According to Yang and Wu (2005), fatigue can be under-
stood as a daily experience of attrition that can have a
negative impact on physical and cognitive functions
(Michielsen et al. 2004) and on mental health (Khayamim
et al. 2016).
In a review by Giallo et al. (2013), fatigue was defined as
a serious health problem for parents of children with
developmental disabilities and was associated with reduced
daytime functioning and difficulty in clarity of thinking,
reduced well-being (including increased depression, anxiety
and stress), less patience and ability to deal with children,
and high maternal stress and irritability. Compared to
mothers of typically developing children, mothers of chil-
dren with developmental disabilities reported significantly
higher levels of fatigue. In addition, fatigue was associated
with parents’ depression, anxiety, stress, lower self-efficacy
and satisfaction (Giallo et al. 2013), and deterioration of
quality of life in terms of physical, social and emotional
functioning (Garip et al. 2016).
Another set of variables that has helped to understand the
mental health of parents of children with developmental
disabilities involves their sociodemographic characteristics
(Giallo et al. 2013; Pozo et al. 2014). Some studies have
pointed out, for example, differences between the gender of
the caregiver in relation to mental health, with mothers
tending to present a higher level of depression and anxiety
than fathers (Pozo et al. 2014). Younger parents also
reported more severe depressive symptoms, mainly in the
first few years after diagnosis (Gatzoyia et al. 2014). In
addition, the financial condition of the family also sig-
nificantly predicts mental health, and parents who cannot
cover the financial expenses of the family have a higher
level of depression (Gatzoyia et al. 2014). Higher levels of
parental education are also related to better mental health
indicators (Tonge et al. 2006).
Given the high demands and challenges faced by parents
in taking care of children with developmental disabilities,
this study extends previous research to examine the poten-
tial impact of taking care of a child with CZS on the mental
health of parents. Three specific objectives were formulated:
(a) to assess the level of mental health of the parents; (b) to
examine the influence of subjective well-being and fatigue
as predictors of parents’ mental health; and (c) to identify
the impact of sociodemographic variables on parents’
mental health. We think that an assessment of how these
parents feel and the way they evaluate their lives can pro-
vide inputs not only to assess how their mental health may
be compromised, but also to think about ways to cope with
that adverse situation, which can in turn improve their
mental health.
Method
Participants
The participants in this study were 86 parents (69 mothers
and 17 fathers) of 69 children diagnosed with CZS born in
the state of Ceará, in northeastern Brazil. The children were
between 1 and 20 months of age (M= 9.67 months; SD=
3.60), the majority being girls (55.1%). The parents were
between 16 and 43 years of age (M= 27.4; SD= 6.78).
Approximately half of the sample (52.5%) lived in the
Fortaleza metropolitan region, while the other half (47.5%)
was composed of residents of different cities in the state.
Their sociodemographic characteristics are presented in
Table 1. This research design and sample size provided
80% power to detect an effect size of d= 0.67 in the t-test
for independent groups, and 97% power to detect an effect
size of η2p= 0.15 in linear multiple regression analysis
(Cohen 1988; Faul et al. 2007), as calculated by G*Power.
Procedure
This research was carried out during the Second Collective
Action Outreach Campaign for children diagnosed with
CZS of the Brazilian state of Ceará. It is an event organized
by a multi-professional team that aims to provide care for
and periodically monitor the development of these children.
The parents of children with CZS who used public healthservices for CZS treatment were invited to participate in this
event. Data was collected during 2 days in December 2016
by members of CAVIVER, a nongovernmental organiza-
tion. Parents were individually approached by one of the
research team members and, at this initial point, the purpose
of the survey was explained, as was the voluntary and
anonymous nature of the responses. The parents who agreed
to participate in the study signed the informed consent form
and then were interviewed. Because the participants had
different levels of education, we chose to conduct inter-
views in order to standardize the data collection. Seven
undergraduate psychology students, trained appropriately
for this task, conducted the interviews. On average, 20 min
was enough to complete each interview. This study is part
of a larger project that has been approved by the research
ethics committee of Albert Sabin Children’s Hospital
(registration number: 1.743.023).
Measures
Subjective well-being was assessed with (1) the Positive
and Negative Affect Schedule (PANAS, Watson et al.
1988) and (2) the Satisfaction with Life Scale (SWLS,
Diener et al. 1985), both adapted to and validated for Brazil
by Giacomoni and Hutz (1997). The PANAS is composed
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of ten adjectives (five positive and five negative; e.g., sad-
ness, fear, contentment, joy) that evaluate how much the
participant has experienced each of these affects in the last
two weeks. The items are rated on a seven-point Likert scale
(1=Nothing to 7= Extremely). The positive affect (α
= .82) and negative affect (α= .73) factors obtained sui-
table indices of internal consistency (Cronbach’s alpha) in
the study sample. The SWLS is composed of five items
which evaluate satisfaction related to general aspects of life
(e.g., In most ways my life is close to my ideal). Responses
are given according to a 7-point scale (1= Strongly dis-
agree to 7= Strongly agree). In the sample, this scale pre-
sented internal consistency of .73.
Fatigue was assessed with the Fatigue Assessment Scale
(FAS; Michielsen et al. 2003). The FAS was adapted to and
validated for Brazil by Gouveia et al. (2015), and is com-
posed of 10 items (e.g., I get tired very quickly; Mentally, I
feel exhausted) answered on a five-point scale (1=Never to
5=Always), where the participants are asked to indicate
how they have been feeling, in a general way, in their day-
to-day life. The scale presented moderate internal con-
sistency (α= .79) in the present sample.
Mental health of the parents was assessed with the
General Health Questionnaire (GHQ-12; Goldberg and
Williams 1988; Gouveia et al. 2012). This scale is com-
posed of 12 items, used to evaluate non-psychotic psy-
chiatric symptoms (e.g., Felt capable of making decisions
about things?; Felt you couldn’t overcome your difficulties).
In the case of negative items, the response alternatives vary
from 1= absolutely not, to 4=much more than usual; in
the case of positive items the answers range from 1=more
than usual, 4=much less than usual. A higher score is
indicative of a lower level of mental health. The internal
consistency index of the scale was also suitable in the
present sample (α= .81). The value of 3 on the total mean
of the GHQ scale was adopted as the cutoff point, with
scores equal to or above that value indicating low mental
health (Totsika et al. 2011).
Participants also answered a series of sociodemographic
questions regarding both the child (e.g., gender and age)
and the characteristics of the mother and father (e.g., age,
schooling, religion, marital status, occupation, employment
status, and household income).
Data Analyses
Initially, descriptive analyses were performed, calculating
measures of central tendency and dispersion to evaluate the
prevalence of SWB, fatigue, and mental health. Then,
Pearson correlations were computed to evaluate the possible
correlations between the studied variables. Hierarchical
multiple regression analysis with the Enter method was also
performed to evaluate if the sociodemographic character-
istics, SWB variables, and fatigue predict the parents’
mental health. Two regressions per block of variables were
calculated. In the first equation, the block of socio-
demographic variables was included (gender of parents, age
of parents, schooling, employment status, family income,
number of siblings, and age of child). In the second equa-
tion, SWB variables and fatigue were added. The socio-
demographic variables gender of parents (0=male, 1=
female) and employment status (0= unemployed, 1=
employed) were coded as dummy variables to be included
Table 1 Sample characteristics
Variable Mothers Fathers
Age (range) 16–42 19–43
Age (M, SD) 26.38 (6.23) 31.41 (7.57)
Education (n, %)
Non-literate – –
Incomplete elementary school 15 (21.7%) 2 (11.8%)
Complete elementary school 8 (11.6%) 2 (11.8%)
Incomplete high school 7 (10.1%) 4 (23.5%)
Complete high school 28 (40.6%) 5 (29.4%)
Incomplete higher education 4 (5.8%) 1 (5.9%)
Complete higher education 6 (8.7%) 3 (17.6%)
Missing cases 1 (1.4%) –
Employment situation (n, %)
Employee 7 (10.1%) 11 (64.7%)
Unemployed 51 (73.9%) 1 (5.9%)
Informal 5 (7.2%) 5 (29.4%)
Retired 0 –
Missing cases 6 (8.7%) –
Marital status (n, %)
Married 21 (30.4%)
Stable union 27 (39.1%)
Separated 8 (11.6%)
Missing cases 13 (18.8%)
Other children (n, %)
0 29 (42%)
1 15 (21.7%)
2 17 (24.6%)
3 5 (7.2%)
4 2 (2.9%)
Missing case 1 (1.4%)
Household income (n, %)
No income 1 (1.4%)
Less than one minimum wage 12 (17.4%)
1 minimum wage 32 (46.4%)
2 minimum wages 11 (15.9%)
3 minimum wages 3 (4.3%)
4 or more minimum wages 5 (7.1%)
Missing cases 5 (7.1%)
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in the analysis. The partial eta squared (η2p) was used as a
measure of the regression effect size. To assess if the psy-
chological variables studied differed between mothers and
fathers, t-tests were carried out. To evaluate the effect size
of these differences, Cohen’s d was used, with values
between 0.20 and 0.50 indicating small effects, values
between 0.50 and 0.80 indicating moderate effects, and
values above 0.80 indicating large effects (more informa-
tion’s about this index can be found in Cohen 1988).
Missing data analysis pointed to less than 3.5% missing
cases across all items of the measures. All missing data
were imputed using the series mean method via the missing
values analysis option available in SPSS 20.0.
Results
Initially, descriptive statistics for positive affects, negative
affects, satisfaction with life, fatigue, and general health
were computed. Regarding parent mental health, 18.6% of
the participants had a score greater than or equal to 2.5
(midpoint of the scale), indicating a negative evaluation of
their mental health, and 6.75% of the participants had a
score greater than the cutoff point adopted (3), indicating
low mental health and probable emotional disorder. Based
on the literature indicating that mothers present worse
mental health compared to fathers, one-tailed t-tests were
performed to test this hypothesis. The results showed sig-
nificant differences between fathers and mothers in all
variables. In general, mothers reported experiencing fewer
positive affects and more negative affects, lower level of
satisfaction with life, a higher level of fatigue, and worse
mental health. The mean values of both groups (and for
parents in general), as well as the test statistics, are pre-
sented in Table 2. The effect sizes for these differences can
be considered moderate since they are very close to or
above the cutoff point recommended in the literature
(Cohen’s d > 0.50).
Bivariate analysis was conductedto examine parent
mental health in the relationships among their positive and
negative affects, satisfaction with life, fatigue, and socio-
demographic variables. Pearson’s r correlations were
employed for continuous variables and point-biserial cor-
relations for dichotomized variables (parent’s sex and
employment situation). The results indicated that lower
parent mental health was associated with mothers. In
addition, positive affects and life satisfaction were asso-
ciated with a better level of mental health, while negative
affects and fatigue were associated with lower mental
health. These data are summarized in Table 3.
Because 34 participants were nested in 17 couples, some
violation of independence of observations might have
occurred. In order to check this possibility, a random effect
regression analysis was run that included only the intercept
to estimate the variance component of the parents’ mental
health (Hox 2010). The results indicated that the variability
in mental health is explained at the individual level (var-
iance component= 1.97, t (16)= 23.7, p< .001), but not at
the couple level (variance component= .05, Wald Z= 1.03,
p= .31). Since the random effect is not significant, the
independence of the observations can be assumed, and so
the mental health of the parents was regressed in the vari-
ables that correlated significantly in the bivariate analysis.
In the first step, the mental health of the parents was
regressed in the model where only the parent’s sex was
Table 2 Positive and negative affects, satisfaction with life, fatigue and general health in the total sample and separately in mothers and fathers
Range Parents M (SD) Mothers M (SD) Fathers M (SD) t test d’s Cohen
Positive affects 1.20–7.0 5.13 (1.24) 4.99 (1.29) 5.71 (0.82) t (84)=−2.17** −0.67
Negative affects 1.0–5.60 2.91 (1.12) 3.03 (1.13) 2.42 (0.96) t (84)= 2.05** 0.58
Satisfaction with life 2.0–7.0 4.74 (1.20) 4.63 (1.18) 5.20 (1.16) t (84)=−1.77* −0.49
Fatigue 1.33–4.22 2.58 (.73) 2.64 (0.82) 2.31 (0.66) t (84)= 1.69* 0.44
Mental health 1.25–3.50 2.08 (.53) 2.14 (0.54) 1.83 (0.38) t (84)= 2.21** 0.64
**p< .01; *p< .05
Table 3 Correlation between mental health and potential predictor
variables
Mental health p
Parents’ sex .23 .030
Parents’ age .07 .550
Education .04 .691
Employment situation −.05 .683
Family income .03 .789
Number of brothers .20 .069
Child’s age −.02 .882
Positive affects −.41 .000
Negative affects .59 .000
Satisfaction with life −.53 .000
Fatigue .63 .000
Note: Parents’ sex: 0=male; 1= female; Employment situation: 0=
unemployed; 1
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included as predictor, obtaining a significant regression
coefficient R2= .06, F (1, 83)= 5.05, p< .05. We observed
that the parent’s sex (β= .23; p< .05; η2p= .06) sig-
nificantly predicts mental health, with mothers having
worse levels of mental health compared to fathers.
In the second step, when positive and negative affects,
satisfactions with life and fatigue were added to the pre-
vious model, the regression coefficient was significant, R2
= .53, F (5, 83)= 17.56, p< .001. In this second model,
parent’s sex did not significantly predict mental health.
Among the other variables, we observed that the negative
affects (β= .24; p< .05; η2p= .06) and life satisfaction (β
=−.26; p< .05; η2p= .08) significantly predict mental
health, so that higher levels of life satisfaction predict better
mental health and higher levels of negative affects predict
lower mental health. Fatigue also significantly predicts
mental health, with higher levels of fatigue predicting worse
mental health (β= .35; p< .01; η2p= .13). This second
model presented a significant increase in the explained
percentage of the parents’ mental health variance, R²Change
= .47; FChange (4, 78)= 19.5, p< .001. Therefore, negative
affects, life satisfaction, and fatigue significantly predict the
mental health of the parents of children with CZS, even
controlling for the effects of sociodemographic variables.
These results are summarized in Table 4.
Discussion
The first objective of this study was to evaluate the levels of
mental health of parents of children with CZS. The results
indicated that 6.75% had low levels of mental health and
probable emotional disorder. Although raising children
involves stress and requires parents to adapt to the chal-
lenges of this new family situation, mothers and fathers of
children with developmental disabilities are likely to face
more challenges, resulting in a negative impact on their
mental health (Giallo et al. 2001; Freitas et al. 2014). It is
probable that parents of children with CZS also face similar
challenges. The parents of these children need, for example,
to deal with the acceptance of the child’s conditions and
limitations, adjusting to and managing their difficulties, and
may face significant emotional distress, relationship con-
flicts, financial problems, more time spent in consultations
with various specialists, and also stigma and negative social
attitudes (Mak and Kwok 2010; Pozo et al. 2014). Such
conditions add even more challenges to the role of mother/
father, leading to greater psychological suffering and, con-
sequently, lower levels of mental health.
In addition, the results showed differences between
fathers and mothers: mothers experience less positive
affects and more negative affects, had a lower level of
satisfaction with life, a higher level of fatigue, and worse
mental health. These results corroborate other findings
presented in the literature. In general, existing research has
indicated that fathers have lower levels of anxiety, stress
and depression than mothers (Dabrowska and Pisula 2010;
Hastings 2003; McCarthy et al. 2006), and that fathers are
less involved in the daily care of children, even when
mothers have a job (Hastings 2003). According to McCar-
thy et al. (2006), much of the research on parents of children
with developmental disabilities has focused on mothers.
This disparity reflects the importance of making the com-
parison between fathers and mothers. The predominance of
studies with mothers has largely been determined by the
social roles traditionally played by women, which involve
taking care of other family members (Borsa and Nunes
2011). According to Wood and Eagly (2010), women
continue to take primary responsibility for childcare and
other domestic work.
Another objective of the current study was to examine
the influence of positive and negative affects, satisfaction
with life, fatigue, and sociodemographic variables on the
mental health of mothers and fathers. Pearson’s correlation
analysis indicated that parents who reported low levels of
mental health also reported greater experience of negative
Table 4 Regression coefficients and effect size obtained in the analysis of mental health predictors
Predictors Model 1 Model 2
B IC 95% β B IC 95% β η2p
Parents’ sex 0.31 0.03;0.59 .23* 0.08 −0.13;0.30 .06 0.00
Positive affects −0,02 −0.09;0.06 −.03 0.00
Negative affects 0,11 0.01;0.21 .24 0.06*
Satisfaction with life −0,11 −0.20;−0.03 −.26 0.08*
Fatigue 0,26 0.11;0.41 .35 0.13**
R2 0.06 0.52
R2Adjusted 0.04 0.50
Parents’ sex: 0=male; 1= female
**p< .01; *p< .05
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affects, greater perception of fatigue, less experience of
positive affects, and lower satisfaction with life, corrobor-
ating the findings of other studies involving parents of
children with developmental disorders (Barlow et al. 2006;
Cheshire et al. 2010). When we considered these variables
in a regression model to explain mental health, we observed
that they account for 50% of the participants’ mental health
variance. Among the sociodemographic variables, onlygender predicted the mental health of the parents, with
mothers presenting worse levels of mental health compared
to fathers (t-test also indicated that mothers showed poorer
mental health than fathers), corroborating other studies that
have indicated differences between fathers and mothers of
children with developmental disabilities (Gatzoyia et al.
2014; Hastings 2003). However, when adding other vari-
ables to the model (positive and negative affects, satisfac-
tion with life, and fatigue), the parents’ gender ceased being
a significant predictor of mental health. Nevertheless, the
results also indicate that mothers show more negative affect,
more fatigue, and less life satisfaction, which leads to
poorer mental health.
Taking in account the SWB variables and fatigue, fatigue
had the greatest effect on mental health, followed by
satisfaction with life and negative affects. In fact, several
kinds of research with parents of children with develop-
mental disabilities have pointed out that fatigue is a strong
risk factor for the development of psychological problems
(Giallo et al. 2013; Runquist 2007). According to Giallo
et al. (2013), physical and mental fatigue can make it more
difficult for parents to access their personal coping resour-
ces to manage stressors of the environment, putting them at
risk of developing problems that affect their well-being,
such as depression. In this sense, psychological interven-
tions focused on this group can help parents understand the
factors related to fatigue, and thus be able to manage them
more appropriately, promoting their general well-being
(Giallo et al. 2001). In relation to the satisfaction with life
and negative affects (SWB components), the results
obtained here support other studies in the literature that
indicate a relationship between SWB and health, whether
physical or mental (Diener and Chan 2011). As stated
earlier, SWB can be understood as the cognitive and
affective assessments (positive and negative) that people
make about their lives. In this study, better mental health of
the parents of children with CZS was predicted by experi-
encing lower levels of negative affects and higher satis-
faction with life.
Although 7% of the sample presented compromised
levels of mental health, we cannot affirm that the other
participants of the sample presented good mental health. In
fact, mental health is not only the absence of a mental
disorder, but also the presence of positive psychological
resources, including components of hedonic or subjective
well-being (e.g., positive affects, life satisfaction, and hap-
piness) as well as components of eudaimonic well-being
(e.g., self-acceptance, positive relationships, autonomy, and
purpose in life; Sin and Lyubomirsky 2009). Thus, inter-
ventions aimed at promoting these positive aspects and
reducing negative ones can contribute to the prevention of
future psychological problems.
Strengths, Limitations, and Future Research
Directions
Although the results obtained make an important and
unprecedented contribution to the understanding of the
mental health of parents of children with CZS, some lim-
itations can be pointed out. A first limitation concerns the
fact that the sample may not be representative of the uni-
verse of mothers and fathers of children with CZS.
Future studies should rely on more representative samples
that are evenly distributed among mothers and fathers.
In addition, the parents who participated in this study had
sought health services on the date they were interviewed.
This might indicate that these parents behave more
proactively by seeking support and treatment for their
children and use more adaptive coping strategies (Dab-
rowska and Pisula 2010), possibly having lower than
average mental distress. Interviewing parents who are
not using these services could provide a different picture
than the one presented here. Moreover, the small sample
size of fathers and the unbalanced sample between mothers
and fathers can increase vulnerability to assumption viola-
tions of the t-test. These flaws indicate that the observed
differences between fathers and mothers should be eval-
uated with caution, since it is possible that with samples
having more equivalent sizes, the measured means of
fathers and mothers may present results different from those
observed here.
Future studies can also make use of a comparison group
consisting of parents of children with typical development,
enabling more precise inferences about the impact of taking
care of a child with CZS on a parent’s mental health. The
cross-sectional design adopted here also does not allow us
to infer cause-and-effect relationships, or to ensure the
direction of the effects between the variables. New research
using longitudinal designs and control groups will be able
to more accurately identify the reliability of the direction of
causal relations between variables. However, the model
proposed here is theoretically consistent with the idea that
people’s subjective interpretation of life situations and
experiences in a positive or negative way will influence
their health (Woyciekoski et al. 2012). Finally, future stu-
dies can also evaluate alternative models to the one tested
here. It is possible, for example, that individual variables
such as parental self-efficacy and coping, as well as
Journal of Child and Family Studies (2018) 27:1207–1215 1213
Author's personal copy
environmental strategies such as social support, mediate the
relationship between the affective and cognitive assess-
ments that individuals make about their lives and their
mental health (Souza et al. 2014).
Nevertheless, the current study presents important con-
tributions to the study of the mental health of mothers and
fathers of children with CZS. First, we extend previous
research on the mental health of parents of children with
developmental disabilities to the parents of children with
CZS, this being the first study to present an overview of the
mental health of mothers and fathers of children with CZS.
The results obtained here suggest that psychological assis-
tance to improve the mental health of the parents of children
with CZS is necessary. In addition, this study also points
out that SWB and parental fatigue are important predictors
of mental health and should be taken into account when
designing intervention strategies that promote the adapta-
tion of parents to developmental disabilities in the family.
Knowing more about the subjective experiences of the
parents is important to design specific support interventions
focused on reducing their psychological distress.
In summary, the results of the current study show that, in
addition to all the health services that should be offered to
children with CZS, the parents of these children, especially
the mothers, need a closer look by health professionals,
especially psychologists, in the sense of thinking about
intervention strategies that focus on the way these indivi-
duals perceive their life experiences and their feelings. In
addition, taking care of the parents implies necessarily
taking care of the children, since psychologically healthy
parents will be in better physical and psychological condi-
tion to take care of their children.
Author Contributions L.E.C.S.: designed and executed the study,
assisted with data collection, and final revision of the manuscript. T.J.
S.L.: designed and executed the study, assisted with the data analyses,
and wrote the paper. E.M.R: contributed by critically reviewing the
theoretical content and discussion of results. A.L.S.P.: contributed by
critically reviewing the theoretical content and discussion of results. T.
C.F.: collaborated with the data collection and text revision. L.B.P.L.:
collaborated with the data collection and text revision.
Compliance with Ethical Standards
Conflict of Interest The authors declarethat they have no conflict of
interest.
Ethical Approval All procedures performed in this study involving
human participants were in accordance with the ethical standards of
the institutional and/or national research committee and with the 1964
Helsinki declaration and its later amendments or comparable ethical
standards. This study is part of a larger project that has been approved
by the Institutional Review Board of Albert Sabin Children’s Hospital
in Fortaleza, Brazil (registration number: 1.743.023).
Informed Consent Informed consent was obtained from all individual
participants included in the study.
References
Barlow, J. H., Cullen-Powell, L. A., & Cheshire, A. (2006). Psycho-
logical well-being among mothers of children with cerebral palsy.
Early Child Development and Care, 176, 421–428. https://doi.
org/10.1080/0300443042000313403.
Borsa, J. C., & Nunes, M. L. T. (2011). Psychosocial aspects of par-
enting: Men and women’s role in nuclear families. Psicologia e
Argumento, 29, 31–39.
Cohen, J. (1988). Statistical power analysis for the behavioral sci-
ences. Hillsdale, NJ: Erlbaum.
Cheshire, A., Barlow, J. H., & Powell, L. A. (2010). The psychosocial
well-being of parents of children with cerebral palsy: A com-
parison study. Disability and Rehabilitation, 32, 1673–1677.
https://doi.org/10.3109/09638281003649920.
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles
in mothers and fathers of pre-school children with autism and
Down syndrome. Journal of Intellectual Disability Research, 54,
266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x.
Diener, E., & Chan, M. Y. (2011). Happy people live longer: Sub-
jective well-being contributes to health and longevity. Applied
Psychology: Health and Well-Being, 3, 1–43. https://doi.org/10.
1111/j.1758-0854.2010.01045.x.
Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The
satisfaction with life scale. Journal of Personality Assessment, 49,
71–5. https://doi.org/10.1207/s15327752jpa4901_13.
Eickman, S. H., Carvalho, M. D. S. G., Ramos, M. A. W., Linden, V.,
& Silva, P. F. S. (2016). Zika virus congenital syndrome. Reports
in Public Health, 32, 1–3. https://doi.org/10.1590/0102-
311X00047716.
Faul, F., Erdfelder, E., Lang, A. G., & Buchner, A. (2007). G*power
3: A flexible statistical power analysis program for the social,
behavioral, and biomedical sciences. Behavior Research Meth-
ods, 39, 175–191. https://doi.org/10.3758/BF03193146.
Freitas, P. M., Rocha, C. M., & Haase, C. G. (2014). Analysis of
predictors of psychological status of mothers of children with
cerebral palsy. Estudos e Pesquisas em Psicologia, 14, 453–473.
Giacomoni, C. H., & Hutz, C. S. (1997). A mensuração do bem-estar
subjetivo: escala de afeto positivo e negativo e escala de satis-
fação de vida [Resumos]. Em Sociedade Interamericana de
Psicologia (Org.). São Paulo: SIP, Anais XXVI Congresso
Interamericano de Psicologia 313.
Gouveia, V. V., Oliveira, G. F., Mendes, L. A., Souza, L. E., Caval-
canti, T. M., & Melo, R. L. (2015). Escala de avaliação da fadiga:
Adaptação para profissionais da saúde. Revista Psicologia:
Organiações e Trabalho, 15, 246–256. https://doi.org/10.17652/
rpot/2015.3.594.
Gouveia, V. V., Lima, T. J. S., Gouveia, R., Freire, L. A., & Barbosa,
L. H. (2012). Questionário de Saúde Geral (QSG-12): o efeito de
itens negativos em sua estrutura fatorial. Cadernos Deĺelőtt Saúde
Pública, 28, 375–384. https://doi.org/10.1590/S0102-
311X2012000200016.
Garip, Y., Ozel, S., Tuncer, O. B., Kilinc, G., Seckin, F., & Arasil, T.
(2016). Fatigue in the mothers of children with cerebral palsy.
Disability and Rehabilitation, 25, 1–6. https://doi.org/10.3109/
09638288.2016.1161837.
Gatzoyia, D., Kotsis, K., Koullourou, I., Goulia, P., Carvalho, A.,
Soulis, S., et al. (2014). The association of illness perceptions
with depressive symptoms and general psychological distress in
parents of an offspring with autism spectrum disorder. Disability
and Health Journal, 7, 173–180. https://doi.org/10.1016/j.dhjo.
2013.10.008.
Géradin, P., Cao-Lormeau, V. M., Desprès, P., & Besnard, M. (2017).
Zika rash and increased risk of congenital brain abnormalities.
Lancet, 14(389), 151–152. https://doi.org/10.1016/S0140-6736
(17)30014-4.
1214 Journal of Child and Family Studies (2018) 27:1207–1215
Author's personal copy
Giallo, R., Wood, C. E., Jellet, R., & Porter, R. (2013). Fatigue,
wellbeing and parental self-efficacy in mothers of children with
an Autism Spectrum Disorder. Autism, 17, 465–480. https://doi.
org/10.1177/1362361311416830.
Giallo, R., Wade, C., Cooklin, A., & Rose, N. (2001). Assessment of
fatigue and depression in mothers of young children: Support for
two separate constructs. Journal of Reproductive and Infant
Psychology, 29, 69–80. https://doi.org/10.1080/02646838.2010.
513050.
Goldberg, D., & Williams, P. (1988). A users guide to the General
Health Questionnaire. Windsor: NFER-Nelson.
Guillamon, N., Nieto, R., Pousada, M., Redolar, D., Muñoz, E.,
Hernández, E., et al. (2013). Quality of life and mental health
among parents of children with cerebral palsy: The influence of
self-efficacy and coping strategies. Mental Health, 22,
1579–1590. https://doi.org/10.1111/jocn.12124.
Hastings, R. P. (2003). Child behaviour problems and partner mental
health as correlates of stress in mothers and fathers of children
with autism. Journal of Intellectual Disability Research, 47,
231–237.
Hox, J. J. (2010). Multilevel Analysis: Techniques and applications.
New York: Routledge.
Khayamim, N., Bahadoran, P., & Mehrabi, T. (2016). Relationship
between fatigue and sleepiness with general health of mothers in
the postpartum period. Iranian Journal of Nursing and Midwifery
Research, 21, 385–390. https://doi.org/10.4103/1735-9066.
185580.
Krauer, F., Riesen, M., Reveiz, L., Oladapo, O. T., Martínez-Vega, R.,
Porgo, T. V., et al. (2017). Zika Virus infection as a cause of
congenital brain abnormalities and Guillain-Barré syndrome:
Systematic review. PLoS Med, 3(14), e1002203 https://doi.org/
10.1371/journal.pmed.1002203.
Mak, W. W. S., & Kwok, Y. T. Y. (2010). Internalization of stigma for
parents of children with autism spectrum disorder in Hong Kong.
Social Science & Medicine, 70, 2045–2051. https://doi.org/10.
1016/j.socscimed.2010.02.023.
McCarthy, A., Cuskelly, M., Kraayenoord, C. E., & Cohen, J. (2006).
Predictors of stress in mothers and fathers of children with fragile
X syndrome. Research in Developmental Disabilities, 27,
688–704. https://doi.org/10.1016/j.ridd.2005.10.002.
Michielsen, S. I., De Vries, J., Van Heck, G. L., Van de Vijver, F. J.
R., & Sijtsma, K. (2004). Examination of the dimensionality of
fatigue. European Journal of Psychological Assessment, 20,
39–48. https://doi.org/10.1027/1015-5759.20.1.39.
Michielsen, H. J., De Vries, J., & Van Heck, G. L. (2003). Psycho-
metric qualities of a brief self-rated fatigue measure: The Fatigue
Assessment Scale. Journal of Psychosomatic Research, 54(4),
345–352. https://doi.org/10.1016/S0022-3999(02)00392-6.
Miranda-Filho, D. B., Martelli, C. M. T., Ximenes, R. A. A., Araújo,
T. V. B., Rocha, M. A. W., Ramos, R. C. F., et al. (2016). Initial
description of the presumed congenital Zika syndrome. American
Journal of Public Health, 4, 598–600. https://doi.org/10.2105/
AJPH.2016.303115.
Moore, C. A., Staples, E., Dobyns, W. B., Pessoa, A., Ventura, C. V.,
Fonseca, E. B., et al. (2016). Characterizing the pattern of
anomalies in congenital Zika syndrome for pediatric clinicians.
JAMA Pediatrics, 3, E1–E8. https://doi.org/10.1001/jamapedia
trics.2016.3982.
Oliveira, S. J. G. S., Melo, E. S., Reinheimer, D. M., Gurgel, R. Q.,
Santos, V. S., & Martins-Filho, P. R. S. (2016). Anxiety,
depression, and quality of life in mothers of newborns with
microcephaly and presumedcongenital Zika virus infection.
Archives of Women’s Mental Health, 19, 1149–1151. https://doi.
org/10.1007/s00737-016-0654-0.
Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and
psychological well-being in parents of children with autism
spectrum disorders: A double ABCX model. Journal of Intel-
lectual Disability Research, 58, 442–458. https://doi.org/10.1111/
jir.12042.
Runquist, J. (2007). A depressive symptoms responsiveness model for
differentiating fatigue from depression in the postpartum period.
Archives of Women’s Mental Health, 10, 267–275. https://doi.org/
10.1007/s00737-007-0208-6.
Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the
facilitation of intrinsic motivation, social development, and well-
being. American Psychologist, 55, 68–78. https://doi.org/10.
1037/0003-066X.55.1.68.
Seltzer, M. M., Almeida, D. M., Greenberg, J. S., Savla, J., Stawski, R.
S., Hong, J., et al. (2009). Psychosocial and biological markers of
daily lives of midlife parents of children with disabilities. Journal
of Health and Social Behavior, 50, 1–15. https://doi.org/10.1177/
002214650905000101.
Sin, N. L., & Lyubomirsky, S. (2009). Enhancing well-being and
alleviating depressive symptoms with positive psychology inter-
ventions: A practice-friendly meta-analysis. Journal of Clinical
Psychology, 65, 467–487. https://doi.org/10.1002/jclp.20593.
Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D.
M., & Bishop, S. L. (2010). Daily experiences among mothers of
adolescents and adults with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 40, 167–178. https://doi.
org/10.1007/s10803-009-0844-y.
Souza, L. A. S., Torres, A. R. R., Barbosa, G. A., Lima, T. J. S., &
Souza, L. E. C. (2014). Self-efficacy as a mediator of the rela-
tionship between subjective well-being and general health of
military cadets. Reports in Public Health, 30, 2309–2319. https://
doi.org/10.1590/0102-311X00177513.
Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., &
Rinehart, N. (2006). Effects on parental mental health of an
education and skills training program for parents of young chil-
dren with autism: A Randomized Controlled Trial. Journal of the
American Academy of Child and Adolescent Psychiatry, 45,
561–569. https://doi.org/10.1097/01.chi.0000205701.48324.26.
Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Ber-
ridge, D. M. (2011). A population-based investigation of beha-
vioural and emotional problems and maternal mental health:
Associations with autism spectrum disorder and intellectual dis-
ability. Journal of Child Psychology and Psychiatry, 52, 91–99.
https://doi.org/10.1111/j.1469-7610.2010.02295.x.
Van der Veek, S. M. C., Kraaij, V., & Garnefski, N. (2009). Down or
up? Explaining positive and negative emotions in parents of
children with Down’s syndrome: Goals, cognitive coping, and
resources. Journal of Intellectual & Developmental Disability,
34, 216–229. https://doi.org/10.1080/13668250903093133.
Vargas, A., Saad, W., Dimech, A. S., Santos, R. H., Sivini, M. A. V.
C., Albuquerque, L. C., et al. (2016). Characteristics of the first
cases of microcephaly possibly related to Zika virus reported in
the Metropolitan Region of Recife, Pernambuco State, Brazil.
Epidemiologia e Serviços Deĺelőtt Saúde, 25, 691–700. https://
doi.org/10.5123/S1679-49742016000400003.
Watson, D., Clark, L. A., & Tellegen, A. (1988). Development and
validation of brief measures of positive and negative affect: The
PANAS scales. Journal of Personality and Social Psychology,
54, 1063–1070.
Wood, W., & Eagly, A. H. (2010). Gender. In S. T. Fiske, D. T.
Gilbert & G. Lindzey (Eds.), Handbook of Social Psychology (pp.
629–667). Hoboken: John Wiley & Sons.
Woyciekoski, C., Stenert, F., & Hutz, C. S. (2012). Determinants of
subjective well-being. Psico, 43, 280–288.
Yang, C. M., & Wu, C. H. (2005). The situational fatigue scale: a
different approach to measuring fatigue. Quality of Life Research,
14, 1357–1362. https://doi.org/10.1007/s11136-004-5680-0.
Journal of Child and Family Studies (2018) 27:1207–1215 1215
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	Mental Health of Parents of Children with Congenital Zika Virus Syndrome in Brazil
	Abstract
	Introduction
	Method
	Participants
	Procedure
	Measures
	Data Analyses
	Results
	Discussion
	Strengths, Limitations, and Future Research Directions
	Compliance with Ethical Standards
	ACKNOWLEDGMENTS
	References