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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
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
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

542,000 deaths annually in Latin America. Twinning programs with
Childhood cancers are rare and have been described as perme- specialized cancer centers in high-income countries have been
ated by stress, pain, and uncertainties, which imply important implemented and shown improvement for childhood cancer out-
psychosocial issues (Bruce et al., 2011; Gibbins et al., 2012; Menezes comes (Howard et al., 2007).
et al., 2007). It represents the second cause of death in Brazilian Brazilian Population-Based Cancer Registries were established
children and adolescents, and the rst one due to health issues, in all regions of the country to systematize the incidence, mortality,
which strengthens the relevance of studies and care improvement and survival data, considering the population density, regional
(Instituto Nacional do Ca^ncer, 2008, 2014). peculiarities, and socioeconomic disparities (Camargo et al., 2010).
Efforts have been made in Latin America to establish cancer In Brazil, leukemia (29%), lymphomas (15.5%), and central nervous
registries for the sake of a better understanding and treatment of system tumors (13.4%) are the most common cancer types in
the disease (Curado et al., 2009). Despite of the lack of infrastruc- children. Prognoses have been improving as a result of more ac-
ture and its implications for the quality of cancer data available, the curate diagnosis and treatment strategies (Instituto Nacional do
Global Initiative for Cancer Registry Development in Low- and 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
* Corresponding author. Tel.: 55 (16)3602 3645; fax: 55 16 3602 4835.
4.3% for boys, and non-Hodgkin lymphoma had 2.4% and 2.5% lower
E-mail addresses: (M.N.F. Arruda-Colli), elisaperina@uol. (E.M. Perina), (M.A. Santos). average mortality rates for girls and boys per year. Average
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),
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 compared with the general population. Those with relapse expe-
girls and 2.3% for boys per year between 1996 and 2005, probably rience showed lower scores in general health perception, probably
related to a criterion change for death classication in case of associated to the late effects of treatment, which highlights the
nervous system tumors (Instituto Nacional do Ca ^ncer, 2008). It is importance of addressing these aspects. In children, Grootenhuis
important to highlight that the South and Southeast regions and Last (2001) analyzed the psychological adjustment in 84 chil-
showed a signicant reduction, which reveals the gains resulting dren with cancer, in terms of control strategies (Cognitive Control
from the establishment of specialized centers for cancer treatment, Strategy Scale for Children), defenses (Defense Scale for Children),
but also draws attention to the health access disparities between anxiety (Trait Anxiety Inventory), and depression (Depression
the different regions of the country (Silva et al., 2013). Questionnaire for Children). There was no signicant difference
Oncology treatment begins after the denition of the diagnosis, related to the relapse experience. Psychological adjustment
determined by clinical, laboratory, and imaging exams. The Bra- showed a relation to capacity of defense and positive expectation
zilian Unied Health System offers universal cancer treatment free regarding the disease process. Hockenberry-Eaton et al. (1995)
of charge to the entire population, following the international investigated children between 6 and 14 years old about the role
protocols for each type of tumor. Specialized centers for cancer of illness longevity and relapse in self-perception (Harter Self
care offer chemotherapy, surgery, and radiotherapy, considering Perception Prole), cancer stressors (About my Illness Inventory),
patients' specic needs and treatment responses (Instituto anxiety (Spielberger State Trait Anxiety Scale), and coping strate-
Nacional do Ca ^ncer, 2008). Prognoses may vary, considering in- gies (Children's Coping Strategies Inventory). Data indicated higher
dividual (e.g. sex, age, race, social and economic factors), tumor trait anxiety and lower self-worth in patients with longer cancer
(e.g. extension, primary site, morphology), and healthcare system treatment and in those who experienced recurrence. There was no
aspects (e.g. screening, diagnosis, treatment), but advances in difference between those who had relapsed or not in terms of
early diagnosis methods and childhood cancer treatment have stressors or use of coping strategies. Authors suggested that early
turned cure into a reality in Brazil (Instituto Nacional do C^ ancer, assessment of children's emotional and self-worth perceptions may
2008). be helpful as a screening method when planning nurse support.
The recurrent disease, dened as the reappearance of the cancer Being aware of emotional aspects of relapsed cancer can help in the
after a period of remission (DeVita et al., 2011), entails a lesser planning of care, in order to offer a better nurse care to both the
possibility of cure, the return to the hospital routine and treatment patient and family.
situation (Hinds et al., 1996; Vivar et al., 2009). Treating recurrent In order to comprehend the experiences of facing the recurrent
cancer remains a challenge. Considering acute lymphoid leukemia, cancer treatment, a qualitative study was conducted with children
for example, relapse rates correspond to approximately 20% in and their family caregivers in southeast Brazil. The aim of the study
children and adolescents. The site of relapse and time from diag- was to describe the phenomenon of living with relapsed cancer by
nosis are the two most important prognostic risk factors, and cur- children's and their family caregivers' perspectives.
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
Recognizing the possible range of health issues and care process
are usually offered (Lopes et al., 1999). Treatment options, clinical
research, a qualitative study was carried out, focused on the
trials, and palliative care support must be discussed with the family
meanings of the family unit and the perceptions about the lived
to offer a better care for the patient and, also, facilitate the decision
experience of recurrent cancer treatment (Crossley, 2007).
making process in this treatment phase.
Case study research can lead to an understanding of a complex
The presence of anxiety and post-traumatic symptoms in family
issue or object and can enhance experiences or add strength to
members is well described in the literature, related to the uncer-
what is already known based on previous research (Stake, 2000;
tainty and lack of control experienced with their children's relapsed
Yin, 1984). Case studies emphasize a detailed contextual analysis
cancer (Hinds et al., 1996; Mu et al., 2001; Espndola & Valle, 2002;
of a limited number of events or conditions and their relationships.
De Graves and Aranda, 2008; Dunn et al., 2012). The psychological
Researchers have made wide use of this qualitative research
impact when experiencing the recurrence of the cancer diagnosis
method to examine contemporary real-life situations and provide
and the need to make decisions related to the child's treatment
the basis for the application of ideas and methods (Stake, 2009). Yin
were highlighted. Authors suggested the role of the health team as
(1984) denes the case study research method as an empirical in-
mediators, offering them support when dealing with such a crisis
quiry that investigates a contemporary phenomenon within its
situation. In the last decade, attention to the psychosocial aspects of
real-life context, when the boundaries between phenomenon and
recurrent cancer has increased, particularly focusing on adult pa-
context are not clearly evident; and in which multiple sources of
tients' experiences (Andersen et al., 2007; Shim et al., 2010; Vivar
evidence are used.
et al., 2010).
The recurrence diagnosis and treatment in adulthood were
accompanied by feelings of frustration, uncertain, hopelessness, Setting and selection of participants
and threat, demanding reorganization in different life aspects
(Vivar et al., 2009; Vivar et al., 2010). Despite the contribution about The child participants were between ve and 12 years old
emotional stress, interpersonal relations, and the impact on daily incomplete, undergoing cancer relapse treatment at Boldrini Chil-
activities when experiencing a recurrent cancer in adults, studies dren's Center, a Brazilian referral center for childhood cancer and
with child populations are required to better understand and hematological treatment. Having motor, comprehension and/or
address their specic needs (Hinds et al., 2002). communication difculties that could interfere in the response to
Studies about young patients' perception when facing treatment the instrument, and having no curative possibilities were dened as
and relapse are less frequent. In a Swiss population of adolescents, exclusion criteria, aiming for major homogeneity of emotional
Essig et al. (2012) investigated acute lymphoid leukemia survivors' patterns. The caregivers included were mothers, fathers or legal
health-related quality of life. Survivors had similar or better scores guardians who were considered the children's primary caregivers
in all dimensions evaluated by means of the Short Form-36 when and who accepted to participate and authorized the children's

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cancer, European Journal of Oncology Nursing (2015),
M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7 3

participation. Comprehension and/or communication difculties theoretical aspects to permit a clinical apprehension of the phe-
were also considered as exclusion criteria. nomenon (Yin, 1984).
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
Eight children and eight caregivers composed the nal sample.
to participate in the present study. Two parents refused, in view of
The children were six boys and two girls, between 5 years and 2
the difculties in talking about the theme and their sorrow at that
months old and 10 years and 8 months old, diagnosed as recurrent
moment, and three cases of data collection were interrupted by the
neuroblastoma (n 4), acute lymphocytic leukemia (n 3), and
child's death. Eight families were willing to participate in the pre-
medulloblastoma (n 1). The caregivers were six mothers, a father
sent study.
and a grandmother. The families came from three different regions
of Brazil: Southeast (n 5), North (n 2) and Central-West (n 1),
Ethical considerations
with low (n 3) and medium per capita income (n 5). Consid-
ering the methodological choice, the sample size was determined
Initially, family caregivers were informed about the study and,
by the saturation concept or the point at which new themes were
after authorizing their participation, the children were also con-
no longer observed in the phenomenon studied (Denzin and
sulted. Caregivers were informed that they were free to decline
Lincoln, 2000). After the thematic content analysis, saturation
without having to explain why, condentiality was guaranteed, and
was identied from the fourth interview and the third set of the D-S
their identities were preserved.
procedure (Tables 1 and 2). Thus, four multiple case studies were
The study was evaluated and approved by the Ethics Research
conducted, as described in Table 3.
Committee of the Boldrini Children's Center, as recommendations
The data will be presented starting with the children's experi-
by the Conselho Nacional de Sade (2012) and Conselho Federal de
ences, followed by the caregivers' point of view and, nally, the
Psicologia (2010). All participants were informed about the study
child-caregiver pair was matched.
procedures, aims, condentiality and provided written consent to
Children's experiences
Data collection procedure
The perception of threat was present in all participants' reports,
In this study, we followed the six steps suggested by Stake with experiences of fragility, abandonment, and loneliness.
(2000, 2009) and Yin (1984) for successful case study research: Renata used the Big Bad Wolf to symbolize the threat,
(1) determining and dening the research questions; (2) selecting expressing her fears when facing this critical situation and her
the cases and determining data gathering and analysis techniques; search for family support. Valentim chose surgery and natural
(3) preparing to collect the data; (4) collecting data in the eld; (5) events, like hurricane and drowning, to express his lack of control
evaluating and analyzing the data; (6) preparing the report. The and feeling of threat that seemed to approximate him to the pos-
research question was How do children and their family caregivers sibility of death. Although Valentim was the only child who directly
experience the recurrent cancer treatment?. expressed himself about the treatment process, it was also noticed
Two sessions of the Drawing-And-Story Procedure (D-S), in Pablo's and Renata's expressions also revealed the experience of
introduced by Trinca (1997) as a tool for clinical exploration of the loss and death in another person, suggesting the difculty of having
personality, were performed with the children. It proposes a series a direct contact with their own health situation.
of free drawings that will be used as stimulus for the story telling, The children symbolized their constant need to ght between
which proved to serve as a sensible comprehensive diagnosis of the good and bad. Fairy tales were remembered by Renata and Valen-
child psychological experiences. When each pair is nished, the tim as a way to express their fears and highlight the support re-
examiner asks for a title and further information about the pro- sources. Pablo, Renata, Gabriel and Valentim also evidenced the
duction. An open-ended interview was held with the caregivers, to perception of threat not restricted to their own world experience,
explore family dynamics, child development, sickness and treat- but also involving the perception of the resonances from the family
ment history. The sessions were audio-recorded with the partici- context. They expressed their worries about the risks surrounding
pants' consent. The investigator also took written notes during the their family, symbolized by threatening situations and weather
interview and recorded eld notes after it was completed. events. The disorganization and insecurity noticed implied the use
of different kinds of self- and family protection.
Data analysis In view of the perceived threat, the children seemed to explore
possibilities of protection. They made investments in vitality,
The reports from the interviews and the narratives collected reinforcing their own mental resources to cope with threat and
during the sessions with the children were fully and literally sickness. Renata and Gabriel valued the family and peer support to
transcribed and then subject to thematic content analysis by the overcome the daily treatment, restrictions experienced and
authors, separately and together (Denzin and Lincoln, 2000). emotional aspects. Valentim and Pablo highlighted the importance
Initially, the interviews and D-S data were subject to integral of the family role to offer a sense of security at this moment. At the
reading for the sake of a general comprehension. The following same time, they recognized their strength to face some challenging
phase was the search for themes, focusing on the relevance and situations and also point out the families' need for care and
enrichment of the discussion on the phenomenon. The D-S series protection.
were analyzed in accordance with literature recommendations, In general, children evidenced their perception of the threat-
considering graphical and verbal aspects to have a global view of ening situation and uncertainty, independently of their age or kind
the conicts experienced (Trinca, 1997). The child and family data of communication established about the disease and prognosis. In a
were matched up to investigate possible relations established, us- singular way, each child engaged in the search for mental forti-
ing the multiple case study approach (Stake, 2000, 2009; Peres and cation and others' protection to deal with their own fears and to
Santos, 2005). In the end, their experiences were articulated with transit among the existential possibilities of being.

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),
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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
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 


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
Fictitious names were used to protect the children's identities.

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

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cancer, European Journal of Oncology Nursing (2015),
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control, which made it difcult for the family to consider the pos- The communication with the child about the diagnosis and
sibility of cure. Paula expressed her frustration with the return to therapeutic process was quarrelsome. Gabriel and Renata's parents
the treatment reality when she was already planning to go back to were natural about the situation and had an open communication
their home and reorganize their lives. Giovana called the recur- with their children; Valentim's mother hesitated and Pablo's family
rence diagnosis as a thud, describing it as worse than the rst one, refused to clarify this situation with him, arguing that it would
especially because they were counting the days to nish the make him suffer in advance. Despite the lack of information,
treatment. children noticed the disease's signs and symptoms, in addition to
The lack of control over the child's health and therapeutic course the experience of the threat and the perceived family changes,
was a frequent theme. Paula questioned the purpose of her son's which seemed to reveal similarities with the rst treatment.
cancer, arguing how desired and how loved he was. A mix of anger
and sadness emerged from the impossibility to keep him (and Discussion
them) out of this suffering. Talking about Valentim's diagnosis, Vera
expressed herself about being blamed by her family for having This study proposed an approximation to the family context and
transmitted a blood disease to her son. Even thought she had all the child's health-disease process. The relapse experience evi-
cancer information and knew the differences between their di- denced feeling of sadness and frustration, facing the failure of cure
agnoses, a feeling of guilt was present and seemed to interfere in and the need to restart the treatment.
her caring role. The children's graphic and verbal expression highlighted two
Death, as the only certainty of human existence, appeared as a major themes in view of the moment experienced: perception of
huge threat to these caregivers, which made the elaboration process threat and search for protection and affection. In their productions,
difcult. Paula and Giovana expressed their awareness of the chal- the children showed their perception of the risks related to the
lenges they would face as a result of the relapse treatment and the world and the challenges they had to deal with daily. In a similar
importance of nding strength to ght for their sons. Ricardo way, Hockenberry-Eaton et al. (1995) described the children's
remembered one specic situation when he thought Renata would comprehension of the treatment situation, uncertainty, and
not survive and how it feels to consider this possibility as real. Vera emotional cost. The children studied seemed to search for strate-
tried to build up a barrier to protect her family by believing that gies that could minimize damages and give sense to the psycho-
everything would work out well and death would not be an option. logical elaboration, either recognizing internal resources or
Paula, on the other hand, nd the recurrence so demanding that she counting on family and peer support. The affective exchanges and
wondered whether losing her child would be less suffering. Also, she the feeling of family union seemed to favor the sense of power
experienced the death of a patient who was close to them. Sharing development, allowing the children to maintain hope and project
the experience of other children's death seemed to concretize the themselves to the temporality of cure and growth (Grootenhuis and
possibility of losing their own child, as an anticipatory grief process. Last, 2001).
Another cross-sectional theme was the need to review care The family caregivers' experiences were revealed in three major
possibilities, inserted in this new and uncertain context. Ricardo themes: sense of lack of control, perception of threat, and giving new
highlighted the learning process he experienced, not only con- meaning to the possibilities of care.
cerning the cancer treatment, but also in his new role as caregiver. Early diagnosis and timely treatment are good prognosis factors
Paula stated that having a child with cancer changes your way of (Instituto Nacional do Ca ^ncer, 2014). However, the delayed begin-
seeing and valuing life experiences, especially regarding the second ning of cancer treatment was frequent in our study and, in com-
treatment when the present time becomes more important. In the bination with the national care structure, implied a huge territorial
same way, Vera believed that living the present was the most migration in search of better treatments. Besides dealing with the
important thing and having faith in God seemed to help her at that treatment challenges (Bruce et al., 2011; Hockenberry-Eaton et al.,
moment. 1995; Dunn et al., 2012; Mu et al., 2001), these families had to deal
The family care and reorganization was also an important with important psychosocial issues, which involved nancial and
theme. Ricardo had to manage the distance from his wife, daughter, work issues, social support, and cultural reorganization (Gibbins
friends, and work to assume Renata's care. Vera and Paula also et al., 2012). The lack of control was evident when facing the fail-
moved from their cities but counted on their husbands to share the ure to stop the child's suffering and the sickness process. The
children's care with. Having someone to share responsibilities caregivers took it as a personal responsibility to protect their chil-
seemed to enhance emotional support, even with all the burn dren, and feelings of guilt emerged due the gap between their
experienced with regard to family organization and nancial issues. desire and the reality (Forghieri, 1993).
The religiousness emerged as another relevant resource for At the same time as the caregivers acted to overcome the
emotional fortication and coping with the uncertainty. treatment and adversities, they were threatened by the risks of the
therapeutics, the uncertainty of the prognosis and the possibility of
Child-caregiver pairs' experiences death, strengthened by the recurrence of the disease. The impos-
sibility of their future choice seemed to amplify the feeling of
The recurrent cancer treatment period was accompanied by a impotence and failure which imposed difculties to make sense of
new beginning and uncertainty. The contact with the known treat- their existence. Al-Gamal and Long (2010) studied the grief process
ment highlighted the unknown, represented by the new condition of in parents of children with cancer and identied more intense
sickness and treatment options, which required dealing with dif- emotions in the initial period than in the later stages of the treat-
culties and restrictions, searching for the existential health. Care- ment. In a complementary way, our data suggests that the expe-
givers and children expressed their emotional and physical suffering rience of recurrence is a critical moment and also able to
when facing invasive procedures, different treatment types and approximate the family to the loss experience, which leads to the
their consequences, such as the following: hospitalization, social importance of specialized emotional care.
restriction, dietary limitations, discouragement, and alopecia. The The extreme preoccupation with the medical orientation seemed
perception of their children's suffering entailed emotional implica- balanced with the desire to enjoy the present time with the child in
tions for the caregivers' experiences, such as search for strength to the second treatment, which was consistent with De Graves and
help them, sense of responsibility and guilt. Aranda (2008). The experience of the child's recurrent cancer for

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),
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the caregivers was permeated by the care paradigm change, from the References
lack of control about the course of the treatment to the uncertainty
about the future and its threats. Caregivers had to reorganize their Al-Gamal, E., Long, T., 2010. Anticipatory grieving among parents living with a child
with cancer. Journal of Advanced Nursing 66 (9), 1980e1990.
lives, values, and psychosocial structure, beyond the health-sickness 10.1111/j.1365-2648.2010.05381.x.
context, to offer better conditions for the child's treatment, in a way Andersen, B.L., Carpenter, K.M., Yang, H.C., Shapiro, C.L., 2007. Sexual well-
similar to another Brazilian study (Lopes and Valle, 2001). Articu- being among partnered women with breast cancer recurrence. Journal of
Clinical Oncology 25 (21), 3151e3157.
lating these fears seemed to aid the signicance process of disease JCO.2006.09.6958.
and health care, helping them to get organized for the new Araujo, T.C.C.F., 2006. Ca ^ncer Infantil: intervena~o, formaa~o e pesquisa em psico-
beginning. oncologia pedi atrica (Child cancer intervention, development and research in
pediatric psycho-oncology). Psicologia Hospitalar 4 (1), 1e12. Retrieved July 3,
Beyond their individual perceptions, it is important to think 2014 from.
about the relations established between child and caregiver, and 74092006000100005&lngpt&nrmiso.
points of interactions in their singular comprehensions. Two major Bruce, M., Gumley, D., Isham, L., Fearon, P., Phipps, K., 2011. Post-traumatic stress
symptoms in childhood brain tumour survivors and their parents. Child: Care,
themes were highlighted: Experiences shared during the treatment
Health and Development 37 (2), 244e251.
and Communication issues. 2214.2010.01164.x.
Children and parents talked about their physical and emotional Conselho Federal de Psicologia (Brazil), 2000. Resolu~ ao CFP no 016/2000 de 20 de
dezembro de 2000. Brasilia, DF, Brazil.
suffering in invasive procedures, treatment, and its consequences,
Conselho Nacional de Sade (Brazil), 2012. Resolu~ ao no 466 de 12 de dezembro de
such as: hospitalization, restriction, prostration, alopecia (Araujo, 2012. Braslia, DF, Brazil. Retrieved July 3, 2014 from.
2006; Li et al., 2010). The rst treatment experience seemed to br/resolucoes/2012/Reso466.pdf.
help them to build meanings for the current situation, putting Camargo, B., Santos, M.O., Rebelo, M.S., Reis, R.S., Ferman, S., Noronha, C.P., et al.,
2010. Cancer incidence among children and adolescents in Brazil: rst report of
together the past, present and future temporalities (Forghieri, 1993). 14 population-based cancer registries. International Journal of Cancer 126 (3),
Despite the evidences of children's resources, as discussed 715e720.
earlier, talking about the return of their disease was a tough task. Cancela, C.S.P., Murao, M., Viana, M.B., Oliveira, B.M., 2012. Incidence and risk fac-
tors for central nervous system relapse in children and adolescents with acute
They respond in a diverse way, between avoiding to talk about it, lymphoblastic leukemia. Revista Brasileira de Hematologia e Hemoterapia 34
offering incomplete information or addressing an open communi- (6), 436e441.
cation. These different positions due to the threatening situation Crossley, M., 2007. Evaluating qualitative research. In: Addington-Hall, J.M.,
Bruera, E., Higginson, I.J., Payne, S. (Eds.), Research Methods in Palliative Care.
seemed to inuence the trust relationships and the children's or- Oxford, New York, pp. 181e189.
ganization to face their fears. The open communication favored the Curado, M.P., Voti, L., Sortino-Rachou, A.M., 2009. Cancer registration data and
elaboration of a sense of security and the lack of information made quality indicators in low and middle income countries: their interpretation and
potential use for the improvement of cancer care. Cancer Causes Control 20 (5),
the elaboration process difcult, opposite to the parents' intention
of protection. Furthermore, the caregivers who decided not to talk De Graves, S., Aranda, S., 2008. Living with hope and fear e the uncertainty of
about the sickness reality showed a huge effort to hide the feelings childhood cancer after relapse. Cancer Nursing 31 (4), 292e301. http://
and fears, with important emotional costs. The child's compre-
Denzin, N.K., Lincoln, Y.S., 2000. Handbook of Qualitative Research. Sage, Thousand
hension of the treatment situation seemed related to their family's Oaks, California.
view and the communication held. Thus, an open and clear DeVita Jr., V.T., Lawrence, T.S., Rosenberg, S.A., DePinho, R.A., Weinberg, R.A. (Eds.),
communication, adequate to the child development stage and to 2011. Cancer: Principles and Practice of Oncology. Lippincott Williams & Wil-
kins, Pennsylvania.
the family's emotional aspects, can decrease fantasies, and help the Dunn, M.J., Rodriguez, E.M., Barnwell, A.S., Grossenbacher, J.C., Vannatta, K.,
child's coping and parental support. The child's cancer care team Gerhart, C.A., et al., 2012. Posttraumatic stress symptoms in parents of children
has an important role as mediator of the communication, therefore with cancer within six months of diagnosis. Health Psychology 31 (2), 176e185.
educational strategy trainings should be a service priority Einsiedel, H.G., von Stackelberg, A., Hartmann, R., Fengler, R., Schrappe, M.,
(Forghieri, 1993; Grootenhuis and Last, 2001; Instituto Nacional do Janka-Schaub, G., et al., 2005. Long-term outcome in children with relapsed
C^ancer, 2010; Hildenbrand et al., 2011). ALL by risk-stratied salvage therapy: results of trial acute lymphoblastic
leukemia-relapse study of the Berlin-Frankfurt-Mnster Group 87. Journal of
Clinical Oncology 23 (31), 7942e7950.
Conclusion JCO.2005.01.1031.
Espndula, J.A., Valle, E.R.M., 2002. Experie ^ncia materna diante da imine ^ncia de
morte do lho com recidiva de ca ^ncer. Pediatria Moderna 38 (5), 188e194.
This study mapped psychosocial aspects of children and care-
Retrieved July 3, 2014 from.
giver's experiences due to relapsed cancer treatment. Further faser003&id_materia1916.
studies about the patient's and family's experience are needed Essig, S., von der Weid, N.X., Strippoli, M.P.F., Rebholz, C.E., Michel, G., Rueegg, C.S.,
et al., 2012. Health-related quality of life in long-term survivors of relapsed
though. Understanding the experiences of the children and their
childhood acute lymphoblastic leukemia. PloS One 7 (5), e38015. http://
family caregivers can support the care planning and nursing in-
terventions that may contribute to an ability to cope with the pe- Forghieri, Y.C., 1993. Psicologia fenomenolo gica: Fundamentos, me todos e pesqui-
sas. Pioneira, Sa~o Paulo.
culiarities of the disease situation e introduced by the relapse
Gibbins, J., Steinhardt, K., Beinart, H., 2012. A systematic review of qualitative
diagnosis of child cancer as well as similar contexts e, and to deal studies exploring the experience of parents whose child is diagnosed and
with the psychosocial resonances. The results highlight the possi- treated for cancer. Journal of Pediatric Oncology Nursing: Ofcial Journal of the
bility to adopt sensitive and caring approaches when facing the Association of Pediatric Oncology Nurses 29 (5), 253e271.
recurrence issues. Grootenhuis, M.A., Last, B.F., 2001. Children with cancer with different survival
perspectives: defensiveness, control strategies, and psychological adjustment.
Conict of interest Psycho-Oncology 10 (4), 305e314. Retrieved July 3, 2014 from http://www.ncbi.
Hildenbrand, A.K., Clawson, K.J., Alderfer, M.A., Marsac, M.L., 2011. Coping with
The authors declare that there are no conicts of interest. pediatric cancer: strategies employed by children and their parents to manage
cancer-related stressors during treatment. Journal of Pediatric Oncology
Nursing: Ofcial Journal of the Association of Pediatric Oncology Nurses 28 (6),
Hinds, P.S., Birenbaum, L.K., Clarke-Steffen, L., Quargnenti, A., Kreissman, S.,
We wish to gratefully acknowledge the nancial support of the Kazak, A., et al., 1996. Coming to terms: parents' response to a rst cancer
recurrence in their child. Nursing Research 45 (3), 148e153. Retrieved July 3,
Brazilian National Council for Scientic and Technological Devel-
2014 from.
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),
M.N.F. Arruda-Colli et al. / European Journal of Oncology Nursing xxx (2015) 1e7 7

Hinds, P.S., Birenbaum, L.K., Pedrosa, A.M., Pedrosa, F., 2002. Guidelines for the Menezes, C.N.B., Passareli, P.M., Drude, F.S., Santos, M.A., Valle, E.R.M., 2007. Ca ^ncer
recurrence of pediatric cancer. Seminars in Oncology Nursing 18 (1), infantil: organiza~ ao familiar e doena. Revista Mal-Estar e Subjetividade 7 (1),
50e59. Retrieved July 3, 2014 from. 191e210. Retrieved July 3, 2014 from
11878040. scriptsci_arttext&pidS1518-61482007000100011&lngpt&tlngpt.
Hockenberry-Eaton, M., Dilorio, C., Kemp, V.,1995. The relationship of illness longevity Mu, P.F., Ma, F.C., Ku, S.M., Shu, H.Q., Hwang, B., Kuo, B.I., 2001. Families of Chinese
and relapse with self-perception, cancer stressors, anxiety, and coping strategies in children with malignancy: the factors impact on mother's anxiety. Journal of
children with cancer. Journal of Pediatric Oncology Nursing 12 (2), 71e79. Pediatric Nursing 16 (4), 287e295. Retrieved July 3, 2014 from. http://www.
Retrieved July 3, 2014 from.
Howard, S.C., Marinoni, M., Castillo, L., Bonilla, M., Tognoni, G., Luna-Fineman, S., Peres, R.S., Santos, M.A., 2005. Considerao ~es gerais e orientao~ es pr
aticas acerca do
et al., 2007. Improving outcomes for children with cancer in low-income emprego de estudos de caso na pesquisa cientca em Psicologia (General
countries in Latin America: a report on the recent meetings of the Monza In- considerations and practical orientations regarding the use of case studies in
ternational School of Pediatric Hematology/Oncology (MISPHO)-Part I. Pediatric scientic research in Psychology). Interao ~ es 10 (20), 109e126. Retrieved July 3,
Blood Cancer 48 (3), 364e369. 2014 from.
Instituto Nacional do Ca ^ncer (Brazil), 2008. Ca ^ncer da criana e adolescente no Shim, E.J., Shin, Y.W., Oh, D.Y., Hahm, B.J., 2010. Increased fear of progression in
Brasil: dados dos registros de base populacional e de mortalidade. Instituto cancer patients with recurrence. General Hospital Psychiatry 32 (2), 169e175.
Nacional do Ca ^ncer, Rio de Janeiro.
Instituto Nacional do Ca ^ncer (Brazil), 2010. Comunicaa ~o de notcias difceis: Silva, D.S., Mattos, I.E., Teixeira, L.R., 2013. Mortalidade por ca ^ncer infantojuvenil:
compartilhando desaos na aten~ ao a sade (Breaking Bad News: Sharing entenda a queda. Rede Ca ^ncer 23, 40e41. Retrieved November 3, 2014 from.
Health Care Challenges). Instituto Nacional do C^ ancer, Rio de Janeiro.
Instituto Nacional do C^ ancer (Brazil), 2014. Estimativa/2014-Incide ^ncia do Ca ^ncer bf9362004140c0bfadadade8765d5801/13_artigo.pdf?MODAJPERES.
no Brasil (Estimate/2014-Cancer Incidence in Brazil). Instituto Nacional do Stake, R.E., 2000. Case study. In: Denzin, N.K., Lincoln, Y.S. (Eds.), Handbook of
Ca^ncer, Rio de Janeiro. Qualitative Research. Thousand, Oaks, California, pp. 236e247.
Li, H.C.W., Chung, O.K.J., Chiu, S.Y., 2010. The impact of cancer on children's physical, Stake, R.E., 2009. The Art of Case Study Research. Sage, Thousand Oaks, California.
emotional, and psychosocial well-being. Cancer Nursing 33 (1), 47e54. http:// Trinca, W., 1997. Formas de investigacaeo clinica em psicologia: Procedimento de desenhos-estorias e procedimento de desenhos de familia com estorias. Vetor,
Locatelli, F., Schrappe, M., Bernardo, M.E., Rutella, S., 2012. How I treat relapsed Sa~o Paulo.
childhood acute lymphoblastic leukemia. Blood 120, 2807e2816. http:// Vivar, C.G., Canga, N., Canga, A.D., Arantzamendi, M., 2009. The psychosocial impact of recurrence on cancer survivors and family members: a narrative review.
Lopes, D.P.L., Valle, E.R.M., 2001. A organizac aeo familiar e o acontecer do tratamento Journal of Advanced Nursing 65 (4), 724e736.
da crianca com c^ancer. In: Valle, E.R.M. (Ed.), Psico-oncologia Pediatrica, Casa do 2648.2008.04939.x.
 logo, S~
Psico ao Paulo, pp. 13e74. Vivar, C.G., Whyte, D.A., McQueen, A., 2010. Again: the impact of recurrence on
Lopes, L.F., Camargo, B., Furrer, A.A., 1999. Aspects of humanization in the treatment survivors of cancer and family members. Journal of Clinical Nursing 19 (13e14),
of terminal phase children. Pediatria Moderna 35 (11), 894e901. Retrieved 2048e2056.
November 3, 2014 from. Yin, R.K., 1984. Case Study Research: Design and Methods. Sage, Newbury Park,
faser003&id_materia700. California.

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),