European Journal of Oncology Nursing xxx (2015) 1e7

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European Journal of Oncology Nursing

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Experiences of Brazilian children and family caregivers facing the

recurrence of cancer
M.N.F. Arruda-Colli a, *, E.M. Perina b, M.A. Santos a
a ~o Preto, Department of Psychology, University of Sa
Faculty of Philosophy, Sciences and Letters of Ribeira ~o Paulo, Av. Bandeirantes, 3900 e Monte Alegre,
CEP: 14049-901, Ribeira ~o Preto, SP, Brazil
b
School of Medical Sciences, University of Campinas, Rua Tessa lia Vieira de Camargo, 126 e Cidade Universitaria Zeferino Vaz, CEP: 13083-887,
Campinas, SP, Brazil

a b s t r a c t
Keywords: Purpose: The aim of the study was to examine the different perspectives of the children and their family
Neoplasm recurrence caregivers' experiences in the treatment of relapsed cancer.
Child psychology
Methods: We conducted 16 sessions of the Drawing-and-Story Procedure (D-S) with 5 to 12-year-old
Psychosocial impact
Family
children who were in treatment due to recurrence of cancer, and 8 in-depth interviews among their
family caregivers. The D-S and the interviews were audio-recorded with the participants' consent; the
transcripts were analyzed using the thematic content analysis.
Results: The children evidenced that they perceived the threatening and uncertainty, independently of
their age or kind of communication established about the disease and prognosis. Caregivers expressed
feelings of frustration, threat and loss of control in view of the relapsed cancer diagnosis and prognosis,
which enhanced the fear of losing their children and hampered the process of attributing meaning to
their existence. Dyads showed similar experiences related to the recurrent cancer issues, and the rst
treatment experience seemed to help them to give new meanings to the current situation.
Conclusion: Understanding the experiences of the children and their family caregivers can support the
planning of psychological interventions that favor coping with the peculiarities of the disease situation
resulting from the relapse diagnosis of childhood cancers.
2015 Elsevier Ltd. All rights reserved.

Introduction Middle-income Countries estimates 900,000 new cases and

Childhood cancers are rare and have been described as perme-
ated by stress, pain, and uncertainties, which imply important
psychosocial issues (Bruce et al., 2011; Gibbins et al., 2012; Menezes
et al., 2007). It represents the second cause of death in Brazilian
children and adolescents, and the rst one due to health issues,
which strengthens the relevance of studies and care improvement
(Instituto Nacional do Ca^ncer, 2008, 2014).
Efforts have been made in Latin America to establish cancer
registries for the sake of a better understanding and treatment of
the disease (Curado et al., 2009). Despite of the lack of infrastruc-
ture and its implications for the quality of cancer data available, the
Global Initiative for Cancer Registry Development in Low- and
* Corresponding author. Tel.: 55 (16)3602 3645; fax: 55 16 3602 4835.
E-mail addresses: arruda.colli@gmail.com (M.N.F. Arruda-Colli), elisaperina@uol.
com.br (E.M. Perina), masantos@ffclrp.usp.br (M.A. Santos).
542,000 deaths annually in Latin America. Twinning programs with
specialized cancer centers in high-income countries have been
implemented and shown improvement for childhood cancer out-
comes (Howard et al., 2007).
Brazilian Population-Based Cancer Registries were established
in all regions of the country to systematize the incidence, mortality,
and survival data, considering the population density, regional
peculiarities, and socioeconomic disparities (Camargo et al., 2010).
In Brazil, leukemia (29%), lymphomas (15.5%), and central nervous
system tumors (13.4%) are the most common cancer types in
children. Prognoses have been improving as a result of more ac-
curate diagnosis and treatment strategies (Instituto Nacional do
Ca^ncer, 2008). Average mortality rates have slightly decreased for
all types of cancer in Brazil between 1979 and 2005. The average
mortality rate of acute lymphoid leukemia dropped by 1% per year,
Hodgkin lymphoma showed a cutback of 2.4% per year for girls and
4.3% for boys, and non-Hodgkin lymphoma had 2.4% and 2.5% lower
average mortality rates for girls and boys per year. Average

http://dx.doi.org/10.1016/j.ejon.2015.02.004
1462-3889/ 2015 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
2 M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7
mortality rates for nervous system tumors increased by 2.4% for
girls and 2.3% for boys per year between 1996 and 2005, probably
related to a criterion change for death classication in case of
nervous system tumors (Instituto Nacional do Ca ^ncer, 2008). It is
important to highlight that the South and Southeast regions
showed a signicant reduction, which reveals the gains resulting
from the establishment of specialized centers for cancer treatment,
but also draws attention to the health access disparities between
the different regions of the country (Silva et al., 2013).
Oncology treatment begins after the denition of the diagnosis,
determined by clinical, laboratory, and imaging exams. The Bra-
zilian Unied Health System offers universal cancer treatment free
of charge to the entire population, following the international
protocols for each type of tumor. Specialized centers for cancer
care offer chemotherapy, surgery, and radiotherapy, considering
patients' specic needs and treatment responses (Instituto
Nacional do Ca ^ncer, 2008). Prognoses may vary, considering in-
dividual (e.g. sex, age, race, social and economic factors), tumor
(e.g. extension, primary site, morphology), and healthcare system
aspects (e.g. screening, diagnosis, treatment), but advances in
early diagnosis methods and childhood cancer treatment have
turned cure into a reality in Brazil (Instituto Nacional do C^ ancer,
2008).
The recurrent disease, dened as the reappearance of the cancer
after a period of remission (DeVita et al., 2011), entails a lesser
possibility of cure, the return to the hospital routine and treatment
situation (Hinds et al., 1996; Vivar et al., 2009). Treating recurrent
cancer remains a challenge. Considering acute lymphoid leukemia,
for example, relapse rates correspond to approximately 20% in
children and adolescents. The site of relapse and time from diag-
nosis are the two most important prognostic risk factors, and cur-
rent protocols point out cure rates after relapse between 30 and
50% (Einsiedel et al., 2005; Locatelli et al., 2012; Cancela et al.,
2012). Along with the specic protocol for the relapsed cancer
treatment, interdisciplinary support and symptom management
are usually offered (Lopes et al., 1999). Treatment options, clinical
trials, and palliative care support must be discussed with the family
to offer a better care for the patient and, also, facilitate the decision
making process in this treatment phase.
The presence of anxiety and post-traumatic symptoms in family
members is well described in the literature, related to the uncer-
tainty and lack of control experienced with their children's relapsed
cancer (Hinds et al., 1996; Mu et al., 2001; Espndola & Valle, 2002;
De Graves and Aranda, 2008; Dunn et al., 2012). The psychological
impact when experiencing the recurrence of the cancer diagnosis
and the need to make decisions related to the child's treatment
were highlighted. Authors suggested the role of the health team as
mediators, offering them support when dealing with such a crisis
situation. In the last decade, attention to the psychosocial aspects of
recurrent cancer has increased, particularly focusing on adult pa-
tients' experiences (Andersen et al., 2007; Shim et al., 2010; Vivar
et al., 2010).
The recurrence diagnosis and treatment in adulthood were
accompanied by feelings of frustration, uncertain, hopelessness,
and threat, demanding reorganization in different life aspects
(Vivar et al., 2009; Vivar et al., 2010). Despite the contribution about
emotional stress, interpersonal relations, and the impact on daily
activities when experiencing a recurrent cancer in adults, studies
with child populations are required to better understand and
address their specic needs (Hinds et al., 2002).
Studies about young patients' perception when facing treatment
and relapse are less frequent. In a Swiss population of adolescents,
Essig et al. (2012) investigated acute lymphoid leukemia survivors'
health-related quality of life. Survivors had similar or better scores
in all dimensions evaluated by means of the Short Form-36 when
Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
compared with the general population. Those with relapse expe-
rience showed lower scores in general health perception, probably
associated to the late effects of treatment, which highlights the
importance of addressing these aspects. In children, Grootenhuis
and Last (2001) analyzed the psychological adjustment in 84 chil-
dren with cancer, in terms of control strategies (Cognitive Control
Strategy Scale for Children), defenses (Defense Scale for Children),
anxiety (Trait Anxiety Inventory), and depression (Depression
Questionnaire for Children). There was no signicant difference
related to the relapse experience. Psychological adjustment
showed a relation to capacity of defense and positive expectation
regarding the disease process. Hockenberry-Eaton et al. (1995)
investigated children between 6 and 14 years old about the role
of illness longevity and relapse in self-perception (Harter Self
Perception Prole), cancer stressors (About my Illness Inventory),
anxiety (Spielberger State Trait Anxiety Scale), and coping strate-
gies (Children's Coping Strategies Inventory). Data indicated higher
trait anxiety and lower self-worth in patients with longer cancer
treatment and in those who experienced recurrence. There was no
difference between those who had relapsed or not in terms of
stressors or use of coping strategies. Authors suggested that early
assessment of children's emotional and self-worth perceptions may
be helpful as a screening method when planning nurse support.
Being aware of emotional aspects of relapsed cancer can help in the
planning of care, in order to offer a better nurse care to both the
patient and family.
In order to comprehend the experiences of facing the recurrent
cancer treatment, a qualitative study was conducted with children
and their family caregivers in southeast Brazil. The aim of the study
was to describe the phenomenon of living with relapsed cancer by
children's and their family caregivers' perspectives.
Methods
Recognizing the possible range of health issues and care process
research, a qualitative study was carried out, focused on the
meanings of the family unit and the perceptions about the lived
experience of recurrent cancer treatment (Crossley, 2007).
Case study research can lead to an understanding of a complex
issue or object and can enhance experiences or add strength to
what is already known based on previous research (Stake, 2000;
Yin, 1984). Case studies emphasize a detailed contextual analysis
of a limited number of events or conditions and their relationships.
Researchers have made wide use of this qualitative research
method to examine contemporary real-life situations and provide
the basis for the application of ideas and methods (Stake, 2009). Yin
(1984) denes the case study research method as an empirical in-
quiry that investigates a contemporary phenomenon within its
real-life context, when the boundaries between phenomenon and
context are not clearly evident; and in which multiple sources of
evidence are used.
Setting and selection of participants
The child participants were between ve and 12 years old
incomplete, undergoing cancer relapse treatment at Boldrini Chil-
dren's Center, a Brazilian referral center for childhood cancer and
hematological treatment. Having motor, comprehension and/or
communication difculties that could interfere in the response to
the instrument, and having no curative possibilities were dened as
exclusion criteria, aiming for major homogeneity of emotional
patterns. The caregivers included were mothers, fathers or legal
guardians who were considered the children's primary caregivers
and who accepted to participate and authorized the children's
 M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7
participation. Comprehension and/or communication difculties
were also considered as exclusion criteria.
The potential sample was the total of patients undergoing a
recurrent cancer treatment between February 2011 and August
2012, mapped with the institution's health team collaboration.
Given the inclusion and exclusion criteria, 13 families were invited
to participate in the present study. Two parents refused, in view of
the difculties in talking about the theme and their sorrow at that
moment, and three cases of data collection were interrupted by the
child's death. Eight families were willing to participate in the pre-
sent study.
Ethical considerations
Initially, family caregivers were informed about the study and,
after authorizing their participation, the children were also con-
sulted. Caregivers were informed that they were free to decline
without having to explain why, condentiality was guaranteed, and
their identities were preserved.
The study was evaluated and approved by the Ethics Research
Committee of the Boldrini Children's Center, as recommendations
by the Conselho Nacional de Sade (2012) and Conselho Federal de
Psicologia (2010). All participants were informed about the study
procedures, aims, condentiality and provided written consent to
participate.
Data collection procedure
In this study, we followed the six steps suggested by Stake
(2000, 2009) and Yin (1984) for successful case study research:
(1) determining and dening the research questions; (2) selecting
the cases and determining data gathering and analysis techniques;
(3) preparing to collect the data; (4) collecting data in the eld; (5)
evaluating and analyzing the data; (6) preparing the report. The
research question was How do children and their family caregivers
experience the recurrent cancer treatment?.
Two sessions of the Drawing-And-Story Procedure (D-S),
introduced by Trinca (1997) as a tool for clinical exploration of the
personality, were performed with the children. It proposes a series
of free drawings that will be used as stimulus for the story telling,
which proved to serve as a sensible comprehensive diagnosis of the
child psychological experiences. When each pair is nished, the
examiner asks for a title and further information about the pro-
duction. An open-ended interview was held with the caregivers, to
explore family dynamics, child development, sickness and treat-
ment history. The sessions were audio-recorded with the partici-
pants' consent. The investigator also took written notes during the
interview and recorded eld notes after it was completed.
Data analysis
The reports from the interviews and the narratives collected
during the sessions with the children were fully and literally
transcribed and then subject to thematic content analysis by the
authors, separately and together (Denzin and Lincoln, 2000).
Initially, the interviews and D-S data were subject to integral
reading for the sake of a general comprehension. The following
phase was the search for themes, focusing on the relevance and
enrichment of the discussion on the phenomenon. The D-S series
were analyzed in accordance with literature recommendations,
considering graphical and verbal aspects to have a global view of
the conicts experienced (Trinca, 1997). The child and family data
were matched up to investigate possible relations established, us-
ing the multiple case study approach (Stake, 2000, 2009; Peres and
Santos, 2005). In the end, their experiences were articulated with
Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
3
theoretical aspects to permit a clinical apprehension of the phe-
nomenon (Yin, 1984).
Results
Eight children and eight caregivers composed the nal sample.
The children were six boys and two girls, between 5 years and 2
months old and 10 years and 8 months old, diagnosed as recurrent
neuroblastoma (n 4), acute lymphocytic leukemia (n 3), and
medulloblastoma (n 1). The caregivers were six mothers, a father
and a grandmother. The families came from three different regions
of Brazil: Southeast (n 5), North (n 2) and Central-West (n 1),
with low (n 3) and medium per capita income (n 5). Consid-
ering the methodological choice, the sample size was determined
by the saturation concept or the point at which new themes were
no longer observed in the phenomenon studied (Denzin and
Lincoln, 2000). After the thematic content analysis, saturation
was identied from the fourth interview and the third set of the D-S
procedure (Tables 1 and 2). Thus, four multiple case studies were
conducted, as described in Table 3.
The data will be presented starting with the children's experi-
ences, followed by the caregivers' point of view and, nally, the
child-caregiver pair was matched.
Children's experiences
The perception of threat was present in all participants' reports,
with experiences of fragility, abandonment, and loneliness.
Renata used the Big Bad Wolf to symbolize the threat,
expressing her fears when facing this critical situation and her
search for family support. Valentim chose surgery and natural
events, like hurricane and drowning, to express his lack of control
and feeling of threat that seemed to approximate him to the pos-
sibility of death. Although Valentim was the only child who directly
expressed himself about the treatment process, it was also noticed
in Pablo's and Renata's expressions also revealed the experience of
loss and death in another person, suggesting the difculty of having
a direct contact with their own health situation.
The children symbolized their constant need to ght between
good and bad. Fairy tales were remembered by Renata and Valen-
tim as a way to express their fears and highlight the support re-
sources. Pablo, Renata, Gabriel and Valentim also evidenced the
perception of threat not restricted to their own world experience,
but also involving the perception of the resonances from the family
context. They expressed their worries about the risks surrounding
their family, symbolized by threatening situations and weather
events. The disorganization and insecurity noticed implied the use
of different kinds of self- and family protection.
In view of the perceived threat, the children seemed to explore
possibilities of protection. They made investments in vitality,
reinforcing their own mental resources to cope with threat and
sickness. Renata and Gabriel valued the family and peer support to
overcome the daily treatment, restrictions experienced and
emotional aspects. Valentim and Pablo highlighted the importance
of the family role to offer a sense of security at this moment. At the
same time, they recognized their strength to face some challenging
situations and also point out the families' need for care and
protection.
In general, children evidenced their perception of the threat-
ening situation and uncertainty, independently of their age or kind
of communication established about the disease and prognosis. In a
singular way, each child engaged in the search for mental forti-
cation and others' protection to deal with their own fears and to
transit among the existential possibilities of being.
4 M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7

Table 1
Distribution of new themes in interviews with the family caregivers.

Thematic categories Interviewsa

Paula Giovana Ricardo Vera Isa Joana Ana Rosa

Emotional experiences due to diagnosis process X X X X X

Cancer diagnosis impact X X X X X X X
Treatment difculties X X X X X X
Recurrence of cancer X X X X X X X X
Communication with the child about diagnosis and treatment X X X X X
Family Repercussions on family organization X X X X X X
Repercussions on marital relationship X X X X X
Emotional aspects of the health sibling X X
Experiences shared with other children and families X X
Coping strategies Faith X X X X X X X
Family support X X X X X
Social support X X X X
Perception of child's coping X X X X X
Development of sense of power X X X X X
Trust in the hospital institution X X X
Number of new categories 11 1 2 1 0 0 0 0
a
Fictitious names were used to protect the caregivers' identities.

Table 2
Distribution of new themes in Drawing-And-Story Procedure set conducted with the children.

Categories Drawing-And-Story Procedurea

Pablo Gabriel Renata Valentim Igor Jlia 

Andre 
Jose

Perception of threat X X X X X X X
Vulnerability and sense of lack of protection X X X X X X X
Perception of fragility on others X X X X
Relations between good and bad X X X
Depersonalization X X X
Search for protection X X X X X X X
Search for affective relationship X X X X X
Perception of restriction X X
Lost experience through life X X X
Self-esteem X X
Perception of coping strategies X X X X X X X
Projection to growth and emotional X X X X X
comfort situations
Number of new categories 8 3 1 0 0 0 0 0
a
Fictitious names were used to protect the children's identities.

Family caregivers' experiences
Late diagnosis and delayed cancer treatment were present in
three family reports and represented emotional costs for their
caregivers. Giovana sorrowfully remembered having Gabriel
treated for viruses and pneumonia for more than a month without
success, until complementary exams established a denitive diag-
nosis. Ricardo focused on Renata's symptoms and their impact on
his daughter's quality of life, as well as on treatment for a mis-
diagnosed urinary infection. For Valentim's family, the insecurity
about the treatment available in their region and difculties in
obtaining access to a new service also delayed the child's treatment.
Territorial migration was a challenge for these families. Pablo's
family had to reorganize the management of the family business
and search for new schools for their children. Valentim's father had
difculties to nd a new job. In Renata's family, important changes
in the family roles were identied, and her father assumed her care,
previously offered by her grandmother.
As a result of the recurrence diagnosis, feelings of sadness and
frustration emerged, with senses of vulnerability and lack of

Table 3
Clinical characteristics of the children selected for the case study.

Childa Age Diagnosis First medical Treatment Period out of Recurrence Treatment stage
appointment treatment

Pablo 7y 6m Neuroblastoma IV January, 2009 Surgery chemotherapy 11 months February, 2011 Hospitalization after the
radiotherapy rst chemotherapy cycle
Gabriel 10y 0m Acute Lymphocytic September, Chemotherapy 0 month October, 2010 Hospitalization after
Leukemia 2008 (maintenance stage) six chemotherapy cycles
Renata 5y 2m Neuroblastoma IV October, 2009 Chemotherapy, surgery and 2 months June, 2011 Radiotherapy
bone marrow transplantation
Valentim 7y 1m Acute Lymphocytic March, 2011 1st treatment: Chemotherapy 1y 7m March, 2011 Hospitalization after the
Leukemia 1st recurrence: Surgery (2nd recurrence) rst chemotherapy cycle
a
Fictitious names were used to protect the child's identity.

Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
 M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7
control, which made it difcult for the family to consider the pos-
sibility of cure. Paula expressed her frustration with the return to
the treatment reality when she was already planning to go back to
their home and reorganize their lives. Giovana called the recur-
rence diagnosis as a thud, describing it as worse than the rst one,
especially because they were counting the days to nish the
treatment.
The lack of control over the child's health and therapeutic course
was a frequent theme. Paula questioned the purpose of her son's
cancer, arguing how desired and how loved he was. A mix of anger
and sadness emerged from the impossibility to keep him (and
them) out of this suffering. Talking about Valentim's diagnosis, Vera
expressed herself about being blamed by her family for having
transmitted a blood disease to her son. Even thought she had all
cancer information and knew the differences between their di-
agnoses, a feeling of guilt was present and seemed to interfere in
her caring role.
Death, as the only certainty of human existence, appeared as a
huge threat to these caregivers, which made the elaboration process
difcult. Paula and Giovana expressed their awareness of the chal-
lenges they would face as a result of the relapse treatment and the
importance of nding strength to ght for their sons. Ricardo
remembered one specic situation when he thought Renata would
not survive and how it feels to consider this possibility as real. Vera
tried to build up a barrier to protect her family by believing that
everything would work out well and death would not be an option.
Paula, on the other hand, nd the recurrence so demanding that she
wondered whether losing her child would be less suffering. Also, she
experienced the death of a patient who was close to them. Sharing
the experience of other children's death seemed to concretize the
possibility of losing their own child, as an anticipatory grief process.
Another cross-sectional theme was the need to review care
possibilities, inserted in this new and uncertain context. Ricardo
highlighted the learning process he experienced, not only con-
cerning the cancer treatment, but also in his new role as caregiver.
Paula stated that having a child with cancer changes your way of
seeing and valuing life experiences, especially regarding the second
treatment when the present time becomes more important. In the
same way, Vera believed that living the present was the most
important thing and having faith in God seemed to help her at that
moment.
The family care and reorganization was also an important
theme. Ricardo had to manage the distance from his wife, daughter,
friends, and work to assume Renata's care. Vera and Paula also
moved from their cities but counted on their husbands to share the
children's care with. Having someone to share responsibilities
seemed to enhance emotional support, even with all the burn
experienced with regard to family organization and nancial issues.
The religiousness emerged as another relevant resource for
emotional fortication and coping with the uncertainty.
Child-caregiver pairs' experiences
The recurrent cancer treatment period was accompanied by a
new beginning and uncertainty. The contact with the known treat-
ment highlighted the unknown, represented by the new condition of
sickness and treatment options, which required dealing with dif-
culties and restrictions, searching for the existential health. Care-
givers and children expressed their emotional and physical suffering
when facing invasive procedures, different treatment types and
their consequences, such as the following: hospitalization, social
restriction, dietary limitations, discouragement, and alopecia. The
perception of their children's suffering entailed emotional implica-
tions for the caregivers' experiences, such as search for strength to
help them, sense of responsibility and guilt.
Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
5
The communication with the child about the diagnosis and
therapeutic process was quarrelsome. Gabriel and Renata's parents
were natural about the situation and had an open communication
with their children; Valentim's mother hesitated and Pablo's family
refused to clarify this situation with him, arguing that it would
make him suffer in advance. Despite the lack of information,
children noticed the disease's signs and symptoms, in addition to
the experience of the threat and the perceived family changes,
which seemed to reveal similarities with the rst treatment.
Discussion
This study proposed an approximation to the family context and
the child's health-disease process. The relapse experience evi-
denced feeling of sadness and frustration, facing the failure of cure
and the need to restart the treatment.
The children's graphic and verbal expression highlighted two
major themes in view of the moment experienced: perception of
threat and search for protection and affection. In their productions,
the children showed their perception of the risks related to the
world and the challenges they had to deal with daily. In a similar
way, Hockenberry-Eaton et al. (1995) described the children's
comprehension of the treatment situation, uncertainty, and
emotional cost. The children studied seemed to search for strate-
gies that could minimize damages and give sense to the psycho-
logical elaboration, either recognizing internal resources or
counting on family and peer support. The affective exchanges and
the feeling of family union seemed to favor the sense of power
development, allowing the children to maintain hope and project
themselves to the temporality of cure and growth (Grootenhuis and
Last, 2001).
The family caregivers' experiences were revealed in three major
themes: sense of lack of control, perception of threat, and giving new
meaning to the possibilities of care.
Early diagnosis and timely treatment are good prognosis factors
(Instituto Nacional do Ca ^ncer, 2014). However, the delayed begin-
ning of cancer treatment was frequent in our study and, in com-
bination with the national care structure, implied a huge territorial
migration in search of better treatments. Besides dealing with the
treatment challenges (Bruce et al., 2011; Hockenberry-Eaton et al.,
1995; Dunn et al., 2012; Mu et al., 2001), these families had to deal
with important psychosocial issues, which involved nancial and
work issues, social support, and cultural reorganization (Gibbins
et al., 2012). The lack of control was evident when facing the fail-
ure to stop the child's suffering and the sickness process. The
caregivers took it as a personal responsibility to protect their chil-
dren, and feelings of guilt emerged due the gap between their
desire and the reality (Forghieri, 1993).
At the same time as the caregivers acted to overcome the
treatment and adversities, they were threatened by the risks of the
therapeutics, the uncertainty of the prognosis and the possibility of
death, strengthened by the recurrence of the disease. The impos-
sibility of their future choice seemed to amplify the feeling of
impotence and failure which imposed difculties to make sense of
their existence. Al-Gamal and Long (2010) studied the grief process
in parents of children with cancer and identied more intense
emotions in the initial period than in the later stages of the treat-
ment. In a complementary way, our data suggests that the expe-
rience of recurrence is a critical moment and also able to
approximate the family to the loss experience, which leads to the
importance of specialized emotional care.
The extreme preoccupation with the medical orientation seemed
balanced with the desire to enjoy the present time with the child in
the second treatment, which was consistent with De Graves and
Aranda (2008). The experience of the child's recurrent cancer for
6 M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7
the caregivers was permeated by the care paradigm change, from the
lack of control about the course of the treatment to the uncertainty
about the future and its threats. Caregivers had to reorganize their
lives, values, and psychosocial structure, beyond the health-sickness
context, to offer better conditions for the child's treatment, in a way
similar to another Brazilian study (Lopes and Valle, 2001). Articu-
lating these fears seemed to aid the signicance process of disease
and health care, helping them to get organized for the new
beginning.
Beyond their individual perceptions, it is important to think
about the relations established between child and caregiver, and
points of interactions in their singular comprehensions. Two major
themes were highlighted: Experiences shared during the treatment
and Communication issues.
Children and parents talked about their physical and emotional
suffering in invasive procedures, treatment, and its consequences,
such as: hospitalization, restriction, prostration, alopecia (Araujo,
2006; Li et al., 2010). The rst treatment experience seemed to
help them to build meanings for the current situation, putting
together the past, present and future temporalities (Forghieri, 1993).
Despite the evidences of children's resources, as discussed
earlier, talking about the return of their disease was a tough task.
They respond in a diverse way, between avoiding to talk about it,
offering incomplete information or addressing an open communi-
cation. These different positions due to the threatening situation
seemed to inuence the trust relationships and the children's or-
ganization to face their fears. The open communication favored the
elaboration of a sense of security and the lack of information made
the elaboration process difcult, opposite to the parents' intention
of protection. Furthermore, the caregivers who decided not to talk
about the sickness reality showed a huge effort to hide the feelings
and fears, with important emotional costs. The child's compre-
hension of the treatment situation seemed related to their family's
view and the communication held. Thus, an open and clear
communication, adequate to the child development stage and to
the family's emotional aspects, can decrease fantasies, and help the
child's coping and parental support. The child's cancer care team
has an important role as mediator of the communication, therefore
educational strategy trainings should be a service priority
(Forghieri, 1993; Grootenhuis and Last, 2001; Instituto Nacional do
C^ancer, 2010; Hildenbrand et al., 2011).
Conclusion
This study mapped psychosocial aspects of children and care-
giver's experiences due to relapsed cancer treatment. Further
studies about the patient's and family's experience are needed
though. Understanding the experiences of the children and their
family caregivers can support the care planning and nursing in-
terventions that may contribute to an ability to cope with the pe-
culiarities of the disease situation e introduced by the relapse
diagnosis of child cancer as well as similar contexts e, and to deal
with the psychosocial resonances. The results highlight the possi-
bility to adopt sensitive and caring approaches when facing the
recurrence issues.
Conict of interest
The authors declare that there are no conicts of interest.
Acknowledgments
We wish to gratefully acknowledge the nancial support of the
Brazilian National Council for Scientic and Technological Devel-
opment (CNPq).
Please cite this article in press as: Arruda-Colli, M.N.F., et al., Experiences of Brazilian children and family caregivers facing the recurrence of
cancer, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.02.004
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