negative feelings and psychological processes in families with

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NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND HOSPITALIZATION
ARTÍCULO DE INVESTIGACIÓN
NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES
IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND
HOSPITALIZATION
RESUMEN
Las enfermedades cardiacas congénitas (ECC) tienen un fuerte impacto en la familia. La investigación interesada
en la salud de los menores en relación con ECC ha enfatizado la importancia de los sentimientos de los
progenitores, dado que su ajuste a la situación afecta la calidad de vida del menor y la familia. El objetivo de este
trabajo fue analizar los sentimientos negativos más significativos relacionados con las necesidades psicológicas
experimentadas por los progenitores durante el diagnóstico y la hospitalización. El objetivo específico fue analizar
la relación entre sentimientos negativos, por un lado, y procesos cognitivos, comportamientos y estrategias de
afrontamiento, por otro. 347 progenitores completaron escalas de medida de sentimientos negativos generales,
específicos y estrategias de afrontamiento, midiendo tanto estrategias actuales como su utilidad percibida.
Las escalas fueron completadas para las fases de diagnóstico y hospitalización. El temor al pronóstico y a la
recuperación son preocupaciones comunes durante ambas fases y se relacionan con sentimientos negativos
generales y específicos. Sin embargo, se detectaron diferencias en relación a las estrategias de afrontamiento,
que se centran en las emociones durante el diagnóstico y en los problemas durante la hospitalización. El
apoyo social profesional surge como un factor clave para manejar sentimientos negativos en ambas fases. El
carácter exploratorio de este estudio sugiere la necesidad de tratar con cautela los resultados. Son precisas
más investigaciones para incrementar el conocimiento y establecer relaciones causales entre los sentimientos
negativos, por un lado, y el apoyo social, las estrategias de afrontamiento y los procesos cognitivos, por otro.
Conceptos como desesperanza y sentido de control pueden ser explicaciones apropiadas para explicar el ajuste
emocional de los progenitores ante las ECC.
Palabras clave: Enfermedad cardiaca congénita, sentimientos negativos, ajuste parental, afrontamiento, apoyo
social.
CORRESPONDENCIA
Ana Barrón1
Esteban Sánchez2
Isabel Varela3
Andrés Arias4
1.Complutense
University
of
Madrid. Faculty of Psychology,
Campus de Somosaguas, 28223
Pozuelo (Madrid) SPAIN.
2.Institute for Advanced Research
University of Tarapacá (Arica,
Chile).
3.Faculty of Psychology University
Alfonso X El Sabio.
4.Faculty
of
Social
Work
Complutense University of Madrid.
ABSTRACT
Correo autor:
Congenital heart disease (CHD) has a strong impact within the family. Researchers interested in child health
[email protected]
outcomes in relation to CHD have highlighted the importance of parental feelings, with their adjustment to
the situation affecting quality of life for child and family. The objective of this work was to analyze the most
significant negative feelings related to the psychosocial needs experienced by parents during diagnosis and hospitalization. The specific aim was to
analyze relationships among negative feelings and cognitive process, behaviors, and coping strategies. 347 parents whose child was diagnosed with
CHD completed scales measuring generalized and particular negative feelings and coping strategies, measuring both real strategies and their perceived
usefulness. The scales were completed for diagnosis and hospitalization. Fear of prognosis and recovery are common worries during both phases and
relate to generalized and particular negative feelings. However, differences appear concerning coping strategies, which are focused on emotions in
diagnosis but problems in hospitalization. Professional social support emerges as a key factor to manage negative feelings in both phases. The exploratory
character of this study demands that its findings be treated cautiously. Further research is required to increase the knowledge base and establish causal
relationships among negative feelings, on one hand, and social support, coping strategies and cognitive processes, on the other. Concepts such as
hopelessness and control are suggested as appropriate explanations for parents’ emotional adjustment to child CHD.
Keywords: Congenital heart disease, negative feelings, parental adjustment, coping, social support.
BACKGROUND
Congenital heart disease (CHD) is a chronic illness, meaning
rates and life expectancy.
children and their families must learn to live with a complex
situation on a daily and permanent basis. Advances in
medicine and surgical treatments have increased survival
•
Nowadays, child heart disease is the congenital
pathology of greatest incidence in Spain, affecting
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
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BARRÓN A. ET AL.
ARTÍCULO DE INVESTIGACIÓN
an estimated eight in every thousand live births.
isolation, etc.).
Most sufferers need treatment during the first year of
their life. In most cases there is a medical or surgical
In terms of well-being, the most widely mentioned feeling
solution, but affected children will need follow-up (1) and
was uncertainty about the future (71%). However, 93%
must adapt to their situation throughout their lives
of parents were hopeful regarding the illness’ evolution.
(2)
.
CHD diagnosis has a strong impact within the family.
Recent studies (6) offer similar results.
Moreover, heart disease usually triggers social, work,
and family conflicts (3).
Families go through different phases in accepting the
illness. An initial phase of emotional crisis involves several
Heart disease can affect the integrity of the family unit. It
feelings: anger, guilt, and incomprehension. There is then
is important to understand how families experience this
a phase of adaptation to the new reality, accompanied by
process in order to maintain or restore the family balance
sadness and depression. At this time, families begin to
. The main aim of any intervention is therefore to increase
reorganise family life. The final phase is stability, where the
quality of life of affected children from a bio-psycho-social
family accepts the new situation, copes with the problem,
perspective .
and finds an appropriate balance between the requirements
(4)
(5)
of the illness and those of the family (1).
In their pioneering study, Appley, Barbour, and Westmacott
(6)
demonstrated different dysfunctions within the family
Previous studies show that the main problems encountered
environment following cardiac disease diagnosis. Their
concerning the hospital system are
sample constituted 100 parents of children affected by
about the illness, ignorance about medical treatments,
CHD. Of those parents, 54% suffered a significant family
difficulties related to communication of medical information,
imbalance, such as changing jobs or moving house.
lack of knowledge about prognosis and evolution of the
Financial problems arose in 45% of cases, while 36%
illness, disorientation in the hospital, and fear of medical
experienced changes in social lives (holidays, parties,
staff. Llopis Cañamera (8) carried out research with parents
etc.). Regarding initial responses, 39% of mothers suffered
of affected children aimed at discerning the main concerns
a “shock” reaction and were more emotionally affected
of families, showing that both parents exhibited feelings of
than fathers. Adaptation to the new situation then occurred,
guilt and impotence, particularly upon diagnosis.
(7, 13, 16, 25)
uncertainty
but 68% of mothers and 43% of fathers reported an
unsatisfactory relationship with the child.
Home return involves changing lifestyles, adopting new
roles, etc. Medical supervision disappears and considerable
In a recent study, Montalvo, Romero, and Florez (2011)
uncertainty arises regarding the appropriate level of
reviewed different dysfunctional areas regarding childcare.
physical activity for the child. In this situation, services
In physical terms, 36.3% of parents reported changes
focused on informing, orienting, and supporting the parents
in their sleep habits and 30.8% fatigue. Overall, most
are necessary (9).
respondents (64.8%) evaluated their physical health as
poor due to their child’s illness. In psychological terms,
Parents play a key role throughout, having to transmit a
parents reported fear of relapse, emotional disturbance
sense of security and trust and ensure their children live
due to diagnosis and treatment, etc., and 17% of parents
as normally as possible within the limits imposed by the
rated their psychological state as poor (financial burdens,
illness, while avoiding over-protectiveness
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
32
(10)
. To achieve
NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND HOSPITALIZATION
ARTÍCULO DE INVESTIGACIÓN
this balance, parents must be properly informed and receive
adequate medical, psychological, and social support
throughout the adaptation process
1. Development of questionnaires to assess needs in
. Moreover, health
three key phases: hospitalisation, diagnosis, and
professionals must know the main needs and concerns of
home return. The present article focuses exclusively
parents in order to plan suitable interventions
on diagnosis and hospitalisation, since the amount of
(15, 22, 30)
(24, 29)
.
information obtained exceeded the recommended size
To analyse these issues in depth, research was designed
and conducted in collaboration with “Fundación Menudos
Corazones”. As mentioned, there are few studies in which
of a single work.
2. Provision of questionnaires to a sample of affected
families.
issues such as concerns, family psychosocial adjustment,
3. Analysis and interpretation of data and results in order
and return to daily life are assessed in reliable empirical
to improve existing support or design new means of
research. This research gap is remarkable given that
support to satisfy needs of affected families.
interventions carried out in Spain with affected families are
not institutionalised, but rather supported and conducted
347 parents completed the questionnaires (15.9% men and
by private associations, including “Fundación Menudos
84.1% women). Mean age was 39 years (SD= 6.33). Most
Corazones” (nationwide), “Todo Corazón” (in Murcia),
participants were married (89.7%), and 66.4% had to move
“Asociación de Cadiopatías Congénitas” (the Balearic
because of their child’s illness. Mean age of children was
Islands), or “Associació d’Ajuda als Afectats de Cardiopatíes
between 0 and 5 years (52%) and between 6 and 10 (23.3%).
Infatils” (Catalonia). Such interventions are not grounded in
Concerning child gender, the final sample comprised
research focused on the specific needs of those families
55.4% boys and 44.6% girls. Regarding educational level
in different coping stages, despite this information being a
of parents, the sample was: 18% primary education, 36%
basic requirement for the proper design of any intervention
secondary education, 45% higher education, and 1%
program.
without formal education.
The overall objective of this work was to analyse the
The Social Psychology Department at Complutense
most significant negative feelings related to psychosocial
University in Madrid designed the questionnaires (see
needs and challenges for affected parents and families
below). The administration of the questionnaire was
in the diagnosis and hospitalisation stages of coping with
supported by “Fundación Menudos Corazones” [“Small
CHD. The specific aim was to analyse correlations among
Hearts Foundation”], that granted access to participants.
negative feelings and cognitive process (concerns),
This support was a key factor, since the families facing
behaviours, and coping strategies (seeking of social
a traumatic event like the one considered in this piece of
support and information). The final goal was to improve
research are likely to express refusal. This circumstance
existing interventions or design new ones engineered to
poses a clear difficulty for researchers, fortunately
satisfy families needs.
overcome through the action of a close a supporting agent
METHOD
for the families. Once contacted, all participants in the
study completed both the diagnosis and hospitalisation
Participants and procedure.
questionnaires as different phases of the present piece of
Our research proceeded as follows:
research.
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Measures
same situation, looking for health professional support
Negative feelings
such as psychologists, nurses, social workers, etc, being
A questionnaire was developed to assess the affective
at the hospital most of the time (H), looking for information
component of families’ psychosocial needs. Since the study
about surgical procedures (H), looking for information about
did not seek to analyse depression in a clinical sense, a
secondary effects and how to deal with them (H), denial,
six-item instrument was developed. The feelings included
distraction, free accommodation, financial support, and
were sadness, fear, anguish, guilt, rage, and impotence.
social worker guidance. The questionnaire differentiated
A Likert-type scale was used to assess their intensity for
actual behaviour and perceived usefulness of coping
the respondent, based on previous research showing those
strategies.
feelings were the most frequently experienced among
parents of children affected by CHD. This questionnaire
In summary, the variables under study were: (1) negative
was applied both in diagnosis and hospitalisation, the
feelings, (2) worries/concerns (cognitive dimension), (3)
internal reliability being α = 0.673 for diagnosis and α =
actual coping strategies (behavioural dimension), and (4)
0.740 for hospitalisation.
perceived usefulness of coping strategies.
Concerns / worries
To assess concerns and worries (the cognitive dimension
RESULTS
of the psychosocial needs), a specific questionnaire was
developed for parents of affected children. As mentioned,
Table 1 provides the descriptive statistics for the main study
previous research shows that the most frequent worries
variable, focusing on negative feelings. Since means for
in both stages are: fear about prognosis, fear related to
rage and guilt were much lower than for other variables,
recovery, what to tell the child, how to talk with and treat
these results were excluded in order to better analyse the
the other members of the family, restructuring of family
main feelings.
life, possible financial problems, possible work problems,
and home return. The internal reliability was α = 0.740 for
Preliminary exploratory analyses were conducted to assess
diagnosis and α = 0.748 for hospitalisation.
whether any of the socio-demographic variables were
associated with negative feelings. Potential relationships
Coping strategies
between generalised and particular negative feelings and
The behavioural component of the psychosocial needs
categorical variables were assessed using t-test (sex,
relates to how parents cope with challenges directly related
marital status, moving from home city, education, child
to the stressful event. Specific items were developed for
sex, and participation in a formal support program). Since
diagnosis and hospitalisation, since previous research
education was transformed into two dummy variables
shows that situational challenges change depending on
(secondary and higher education), t-test was considered
the phase. Nevertheless, the structure of the questionnaire
an appropriate analysis for this purpose.
remained the same, including the following dimensions:
seeking information, seeking social support, seeking
Several significant differences were found for socio-
professional guidance, and denial. Specifically, the items
demographic variable in diagnosis. Sadness (t = 3.312; p
included were: looking for medical information, looking
< 0.05) and GNF (t = 2.605; p < 0.01) scores were higher
for family support, looking for the support of people in the
for females. Impotence was higher among single parents
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
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NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND HOSPITALIZATION
ARTÍCULO DE INVESTIGACIÓN
Tabla 1: Descriptive statistics for negative feelings variables.
Potential Range
Diagnosis Mean (SD)
Hospitalisation Mean (SD)
Sadness
0-4
3.62 (0.72)
3.49 (0.80)
Fear
0-4
3.76 (0.54)
3.81 (0.48)
Anguish
0-4
3.71 (0.60)
3.68 (0.62)
Guilt
0-4
2.51 (1.16)
2.27 (1.16)
Rage
0-4
2.93 (1.20)
2.73 (1.21)
Impotence
0-4
3.62 (0.75)
3.45 (0.87)
GNF
0-24
20.09 (3.21)
19.37 (3.49)
GNF, generalised negative feelings.
(t = 2.219; p < 0.05). Finally, respondents holding higher
impotence. This statement applies to the different
university qualifications scored lower in sadness (t = 2.302;
dimensions considered in the questionnaire (cognitive
p < 0.05), impotence (t = 2.539; p < 0.05), and GNF (t =
processes, real coping strategies, and perceived usefulness
3.201; p < 0.01).
of coping strategies) (tables not shown, available from
correspondence author).
During hospitalisation, females scored higher in anguish
(t = 1.982; p < 0.05). Scores for respondents with higher
Given these results and those for socio-demographic
education were lower for sadness (t = 3.028; p < 0.01),
variables, and the exploratory nature of our piece of
fear (t = 2.010; p < 0.05), impotence (t = 2.609; p < 0.01),
research, all the variables were incorporated in the next
and GNF (t = 3.308; p < 0.01). Moreover, respondents
analytical step (regression). Separate regression analyses
that had participated in a support program scored lower in
were performed to predict GNF and the main emotional
impotence (t = 2.348; p < 0.05).
dimensions considered in the questionnaire (sadness, fear,
anguish, and impotence) for diagnosis and hospitalisation.
Potential relationships among GNF, particular feelings,
and continuous study variables were assessed using
Regarding GNF, results for diagnosis and hospitalisation are
Pearson correlations for common variables in diagnosis
shown in tables 2 and 3 respectively. A number of variables
and hospitalisation. For both diagnosis and hospitalisation,
obtained significant coefficients for both stages, specifically
a remarkable number of variables significantly correlated
fear of prognosis and fear for recovery, which scores are
with negative feelings of sadness, fear, anguish, and
positively related to negative feelings. Moreover, a different
Table 2: Multiple regression analysis assessing parents’ negative feelings in diagnosis.
Variable
B
SE B
β
Age (respondent)
0.001
0.004
0.012
Sex (respondent)
0.130
0.068
0.094†
Number of children
0.011
0.035
0.018
Marital status
- 0.093
0.080
- 0.056
Move from home city
- 0.084
0.054
- 0.078
Secondary education
0.070
0.070
0.067
- 0.054
0.070
-0.053
0.025
0.082
0.015
High education
Intervention program
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Child sex
Position among siblings
0.014
0.049
0.013
- 0.033
0.044
- 0.042
0.216
0.048
0.238***
Worries (cognitive dimension)
Fear of prognosis
Fear for recovery
0.057
0.047
0.063*
What to say the child
0.018
0.037
0.034
How to treat the child
0.067
0.038
0.132†
Family life management
0.063
0.031
0.120
Financial problems
0.072
0.032
0.146*
- 0.002
0.030
- 0.004
0.056
0.026
0.117*
Look for medical information
0.041
0.042
0.061
Look for family support
0.011
0.038
0.019
Look for peers support
- 0.036
0.038
-0.070
0.068
0.040
0.125†
0.016
0.050
0.020
- 0.025
0.042
- 0.046
Work problems
Home return
Real coping strategies
Look for health professionals support
Denial
Information about free accommodation
Information about financial support
0.129
0.053
0.190*
- 0.042
0.049
- 0.064
Look for medical information
- 0.059
0.041
- 0.088
Look for family support
- 0.037
0.041
- 0.063
Social workers guidelines
Perceived usefulness of coping strategies
Look for peers support
0.032
0.039
0.062
Look for help professionals support
- 0.081
0.039
- 0.155*
Denial
- 0.040
0.046
- 0.051
Information about free accommodation
0.023
0.032
0.049
Information about financial support
0.007
0.042
0.012
Social workers guidelines
0.039
0.042
0.066
Final R2=0.33; final adjusted R2=0.26; †P < 0.10, *P < .0.05, **P < 0.01, ***P < 0.001
Table 3: Multiple regression analysis assessing parents’ negative feelings in hospitalisation.
Variable
B
SE B
β
Age (respondent)
- 0.003
0.005
- 0.37
Sex (respondent)
0.067
0.075
0.046
Number of children
- 0.013
0.040
- 0.020
Marital status
- 0.105
0.088
- 0.060
Move from home city
- 0.059
0.059
- 0.052
Secondary education
- 0.029
0.077
- 0.027
High education
- 0.156
0.078
- 0.146*
Intervention program
- 0.153
0.093
- 0.088
Child sex
Position among siblings
0.026
0.054
0.024
- 0.010
0.050
- 0.013
0.057
0.055
0.160**
Worries (cognitive dimension)
Fear of prognosis
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
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NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND HOSPITALIZATION
ARTÍCULO DE INVESTIGACIÓN
Fear for recovery
0.144
0.067
0.120*
What to say the child
- 0.016
0.045
- 0.028
How to treat the child
0.107
0.046
0.194*
Family life management
0.090
0.033
0.163**
Financial problems
0.013
0.038
0.024
Work problems
- 0.013
0.037
- 0.025
Feeding
0.012
0.029
0.022
Home return
0.035
0.033
0.063
Look for medical information
0.020
0.042
0.031
Look for family support
0.001
0.050
0.002
Real coping strategies
Look for peers support
Look for health professionals support
Being in the hospital
Denial
Look for information about surgery
Look for information about secondary effects
Look for information about dealing secondary effects
Information about free accommodation
0.032
0.044
0.060
- 0.032
0.046
- 0.054
0.037
0.044
0.056
- 0.038
0.041
- 0.063
0.041
0.052
0.068
- 0.038
0.064
- 0.064
0.110
0.058
0.190†
- 0.044
0.042
- 0.087
Information about financial support
0.032
0.058
0.049
Social workers guidelines
0.052
0.056
0.079
Look for medical information
- 0.067
0.053
- 0.095
Look for family support
- 0.006
0.055
- 0.010
Look for peers support
Perceived usefulness of coping strategies
- 0.013
0.048
- 0.023
Look for health professionals support
0.003
0.042
0.005
Being in the hospital
0.008
0.042
0.013
Denial
Look for information about surgery
Look for information about secondary effects
Look for information about dealing secondary effects
Information about free accommodation
0.029
0.038
0.050
- 0.061
0.061
- 0.096
0.088
0.076
0.145
- 0.065
0.072
- 0.106
0.056
0.039
0.114
Information about financial support
- 0.025
0.051
- 0.043
Social workers guidelines
- 0.017
0.051
- 0.028
Final R2=0.31; final adjusted R2=0.21; †P < 0.10, *P < .0.05, **P < 0.01, ***P < 0.001
set of variables resulted in significant coefficients depending
worries about how to treat the child and worries about family
on the stage. For diagnosis, worries about financial problems
life management. In addition, one demographic variable
and home return, both correlated positively with scores for
was related to negative feelings. Specifically, respondents
negative feelings. Regarding actual coping strategies, a
in the higher education group showed lower scores in the
positive and significant coefficient was obtained for seeking
GNF variable.
financial support. Finally, concerning perceived usefulness
Following the analysis for the GNF variable, separate
of coping strategies, seeking professional support reduced
analyses were conducted for four specific negative feelings:
negative feelings. For hospitalisation, the main relationships
sadness, fear, anguish, and impotence. As stated, all four
involved positive regression coefficients being obtained for
were measured in both diagnosis and hospitalization
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(detailed tables showing the results obtained can be
effects (actual behavior) (β = 0.248; p < 0.05) and
obtained from the correspondence author). Again, worries
position among siblings (β = 0.149; p < 0.05), with
about prognosis obtained significant regression coefficients
a negative coefficient for actual seeking of health
for every negative feeling considered both in diagnosis
professional support (β = 0.211; p < 0.01).
and hospitalisation. Moreover, worries about the recovery
•
Impotence: For diagnosis, our results show a positive
variable obtained significant coefficients for fear (β = 0.145;
relationship with worries about home return (β = 0.198;
p < 0.01) and impotence (β = 0.123; p < 0.05) in both phases,
p < 0.001) and actual looking for medical information (β
but for anguish this relationship was only observed for
= 0.127; p < 0.05). However, the relationship is negative
hospitalization (β = 0.196; p < 0.001). However, differences
in the cases of those married (β = 0.139; p < 0.01) and
in the regression equation were found among the specific
the perceived usefulness of seeking health professional
negative feelings, as described below.
support (β = 0.153; p < 0.05). For hospitalisation, a
positive regression coefficient was found for looking
•
Sadness: For diagnosis, women obtained higher
for information about surgery (actual behavior) (β =
scores (β = 0.110; p < 0.05) and perceived usefulness
0.183; p < 0.05), with negative regression coefficients
of seeking health professional support diminished
for those married (β = 0.130; p < 0.05) and participating
sadness (β = 0.174; p < 0.05). For hospitalisation,
in an intervention program (β = 0.137; p < 0.05).
worries about how to treat the child obtained a positive
correlation (β = 0.204; p < 0.05), while perceived
usefulness of seeking information about surgery (β =
DISCUSSION
0.198; p < 0.05) and higher education (β = 0.149; p <
•
0.05) showed a negative relationship.
Our results support previous findings about the challenges
Fear: For diagnosis, a positive relationship was found
posed by different phases when families face child CHD.
with number of children in the family (β = 0.133; p <
As stated, our research focused specifically on diagnosis
0.05), with negative correlations for moving away from
and hospitalisation. Although there are common processes
home city (β = 0.120; p < 0.05) and perceived usefulness
for both phases, it is important to identify the particularly
of seeking information about financial support (β =
significant variables in each one, in order to offer cues for
0.143; p < 0.05). Regarding hospitalisation, positive
improvement of intervention programs.
regression coefficients were found for looking for
•
information about secondary effects (actual behavior)
Commonalities: the key role of cognition
(β = 0.278; p < 0.01), and negative coefficients for
Our results highlight the importance of cognitive processes
perceived usefulness of seeking medical information
during diagnosis and hospitalisation. Specifically, two main
(β = 0.211; p < .01), higher education (β = 0.217; p <
worries pervade both stages, being significant for GNF
0.01), and being married (β = 0.132; p < 0.01).
and almost every particular feeling: fear of prognosis and
Anguish: For diagnosis, a positive relationship was
fear for recovery. Although true that other variables are
found with actual looking for family support (β = 0.152;
significant in the regression analysis for GNF (for example,
p < 0.05), and a negative one for perceived usefulness
concerns about how to treat the child, home return, etc.),
of looking for family support (β = 0.064; p < 0.05). For
when considering the regression equations for particular
hospitalisation, positive regression coefficients were
feelings, only worries about prognosis and recovery remain
observed for looking for information about secondary
as key factors in both phases.
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
38
NEGATIVE FEELINGS AND PSYCHOLOGICAL PROCESSES IN FAMILIES WITH CHILDREN AFFECTED BY CONGENITAL
HEART DISEASE DURING DIAGNOSIS AND HOSPITALIZATION
ARTÍCULO DE INVESTIGACIÓN
emotions, while hospitalisation generates other demands
Previous research
demonstrates the relevance
related with needing to improve the sense of control over
of cognitive factors for parents facing CHD in a broad
the situation. Previous studies offer contradictory results.
sense. Our research is consistent with those findings, and
(31)
emphasises particular cognitive contents – those related
health and adjustment among mothers of children affected
with prognosis and recovery.
by cystic fibrosis. Similarly, Davis et al. (1998) found the
(3, 11, 27)
Failed to find an association between locus of control for
adjustment of parents of children affected by CHD was
Differences: the specificity of coping processes
unrelated to self-efficacy and locus of control. However,
While it has been observed that commonalities are related
recent theoretical and empirical developments on the role
to cognitive processes, differences emerge regarding
played by sense of control in psychosocial adjustment may
coping processes. In this vein, important variations
prove more efficient and specific in explaining parental
between diagnosis and hospitalisation are detected in
adjustment to children’s chronic illness. Particularly,
coping strategies used by parents to confront stressful
the hopelessness development of the classic learned
situations. A clear tendency to use coping strategies
helplessness theory (Abramson et al., 1995) should be
oriented to managing emotions emerges as the most
considered to account for the relation between emotional
relevant to reduce negative feelings during diagnosis.
adjustment and sense of control for parents facing the
Most strategies relate to looking for social support, mainly
stressful situation at hand. Control-based explanation is
from social workers, psychologists, and family: basically,
in this sense consistent with recent findings showing that
emotional social support. Moreover, perceived usefulness
parents of children affected by CHD frequently experience
of this behavior correlates with lower scores for sadness,
hopelessness feelings (20).
anguish, and impotence. However, during hospitalisation
this tendency changes and the more significant coping
In their well-known article on the importance of social
strategies focus on managing the problem. Specifically in
support, Cohen & McKay (1984) proposed the stress-
this phase, behaviors preventing negative feelings centre
support matching hypothesis suggesting that support is
around looking for medical information, such as looking for
more likely to be beneficial when matched with the demands
information about surgery and secondary effects. Again,
of the stressor. This hypothesis finds support in later studies
perceived usefulness of these strategies corresponds to
(9, 17, 23)
lower scores in different negative feelings (sadness and
approach. In this vein, looking for information could be
fear). This is consistent with previous studies
considered a specific strategy based on social support – in
(20)
.
. Our results seem to fit well with this theoretical
this case, informational social support – which should be
These findings are consistent with key theoretical models
the best match with the demands posed in hospitalisation,
of coping and social support
. The classical model of
since it involves surgery or medical procedures. The main
advocates the contextual nature of
sources of this kind of information during hospitalisation are
Lazarus y Folkman
(12)
(28)
coping strategies, with appraisal and coping emerging from
surgeons, doctors, and health professionals.
the interaction between situational demands and personal
factors. Effectiveness of coping is defined by the match
Sociodemographic variables.
between real strategies and the specific demands posed
Sociodemographic variables appear more important during
by the situation. In our study, it seems diagnosis can elicit a
hospitalisation, with higher education and marital status
shock-like state best handled through strategies oriented to
significantly related to GNF and to particular feelings
Rev. cienc. salud med. Volumen 3, Número 2, Mayo de 2016.
39
BARRÓN A. ET AL.
ARTÍCULO DE INVESTIGACIÓN
of sadness, fear, and impotence. This seems logical as
parents at particular stages of coping with heart disease (24).
these variables relate to differential access to important
Further research is needed to design and develop effective
coping resources: social and financial support, and ability
interventions aimed at improving quality of life for affected
to access and understand relevant medical information.
families.
Unmarried people may suffer greater task overload due to
lack of partner social support; this may prove particularly
important when other social support sources are limited.
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