Surviving childhood leukemia in a Latin culture: an explorative study based on young adults' written narratives.

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Surviving Childhood Leukemia in a Latin Culture: An Explorative Study Based on Young Adults’ Written Narratives a

a

Lucia Zannini MA, PhD , Cesarina Cattaneo MA , Momcilo Jankovic b

MD & Giuseppe Masera MD

b

a

Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan, Italy b

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Department of Paediatrics, Università degli Studi di MilanoBicocca, S. Gerardo Hospital, Monza, Italy Accepted author version posted online: 02 Jul 2014.Published online: 11 Sep 2014.

To cite this article: Lucia Zannini MA, PhD, Cesarina Cattaneo MA, Momcilo Jankovic MD & Giuseppe Masera MD (2014) Surviving Childhood Leukemia in a Latin Culture: An Explorative Study Based on Young Adults’ Written Narratives, Journal of Psychosocial Oncology, 32:5, 576-601, DOI: 10.1080/07347332.2014.936648 To link to this article: http://dx.doi.org/10.1080/07347332.2014.936648

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Journal of Psychosocial Oncology, 32:576–601, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2014.936648


Surviving Childhood Leukemia in a Latin Culture: An Explorative Study Based on Young Adults’ Written Narratives LUCIA ZANNINI, MA, PhD and CESARINA CATTANEO, MA Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan, Italy

MOMCILO JANKOVIC, MD and GIUSEPPE MASERA, MD Department of Paediatrics, Università degli Studi di Milano-Bicocca, S. Gerardo Hospital, Monza, Italy

This study investigated memories of childhood leukemia conveyed by survivors belonging to a Latin culture, exploring whether benefit findings was spontaneously reported, as by non-Latin survivors. Three hundred patients previously treated for leukemia were contacted by post/e-mail and asked to write freely about their illness experience. The 106 letters received were analyzed for narrative structure and content, according to a grounded theory approach. Participants expressed most of the themes conveyed by childhood cancer survivors in non-Latin countries, and benefit finding was spontaneously reported. To the latter, the usefulness of creating and maintaining personal narratives on cancer experience, sustained by health care professionals, is discussed. KEYWORDS benefit finding, childhood leukemia, Latin culture, qualitative study, survivorship, written narrative

INTRODUCTION Leukemia has been shown broadly to be the leading childhood cancer in many countries. In Italy, childhood cancer annual incidence rate is 175.4/million, compared to the rate in the United States 158.0/million, and the European rate of 140.0/million (e.g., Germany 141.0/million, and France 148.0/million). We have to consider that acute lymphoblastic leukemia (ALL), Address correspondence to Lucia Zannini, MA, PhD, Department of Biomedical Sciences for Health, Università degli Studi di Milano, Via Pascal, 36, 20133 Milano, Italy. E-mail: [email protected] 576


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which represents one third of pediatric cancer diagnosed annually in the world, as well as the incidence of childhood leukemia has slowly increased during the period from 1973 to 2006 worldwide. The recent analysis of trends since 1992 shows that incidence rates continue to rise (Reaman & Smith, 2011). The current national 5-year survival rate for ALL is 88% for children younger than age 14. Surviving childhood leukemia is therefore a current issue in Italy, and growing attention has been given to the challenges of childhood cancer survivorship and its lifelong effects. The childhood cancer experience and subsequent prolonged, intense treatments have profound effects on children’s physical and psychological development (Enskär & Berterö, 2010; Kim & Yoo, 2010). Studies conducted with childhood cancer survivors have highlighted diverse problems such as fear of treatments or treatment-related side effects, daily activities controlled by illness, changes in physical appearance, being treated differently, depression, low self-esteem, and forced dependence (Kim & Yoo, 2010; Parry & Chesler, 2005). Childhood cancer can produce fears and concerns about recurrence, infertility, existential issues (i.e., “How do we want to live our lives, after having gone through the experience of cancer?”), and interruptions of school, careers, and life plans, in addition to concerns about employment and insurance discrimination (Brown, Pikler, Lavish, Keune, & Hutto 2008; Parry & Chesler, 2005; Weigers, Chesler, Zebrack, & Goldman 1998; Zebrack, 2011). Nevertheless, a number of studies have documented some positive effects reported by those who have experienced stressful life events such as cancer, despite the multiple challenges (Sumalla, Ochoa, & Blanco 2009).

Review of the Literature Since the 1980s, literature has suggested that some individuals who acquire a disability can experience positive changes (Liveneh, 1984). In those years, Lazarus and Folkman (1984) suggested that a stressful event, such as the experience of cancer, may not be a stressor if the person does not perceive that experience as a threat, but rather as a positive or even challenging one. In the authors’ perspective, people can be taught to manage their stress and may even learn to change their perspective of the stressor. Lazarus and Folkman’s transactional model of stress and coping was later extended, highlighting the functions of meaning making in the coping process (Park & Folkman, 1997). Cancer can lead to positive psychosocial outcomes, through the processes of coping, thriving, and meaning making (Karian, Jankowski, & Beal, 1998; Lau & van Niekerk, 2011; Parry & Chesler, 2005; Salik & Auerbach, 2006). Some cancer survivors have improved life outlooks (Brown et al.,


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2008; Karian et al., 1998; Parry & Chesler, 2005) and developed deeper relationships (Andrykowski, Brady, & Hunt, 1993; Enskär & Berterö, 2010; Karian et al., 1998; Lau & van Niekerk, 2011; Parry & Chesler, 2005; Salik & Auerbach, 2006), transforming a threat into a challenge (Parry & Chesler, 2005). Studies conducted in Italy have even suggested that childhood cancer survivors are better adjusted (in psychosocial terms) than healthy controls (Maggiolini et al., 2000), even when there were decrements in selected quality of life domains compared with peers who had never had cancer (Zebrack, 2011). Positive outcomes can be related to a process of thriving, considering the following indicators: a perceived change of the self and a shift from victim to survivor; interpersonal changes and greater empathy for others; and philosophical changes and new priorities in life (e.g., altered priorities, greater joy for one’s life, greater sense of meaning; Parry & Chesler, 2005). Therefore, thriving cannot be reduced to coping mechanisms but rather deals with broad positive changes in one’s identity and life outlook. Parry and Chesler (2005) affirmed that “the concept of meaning making is central to the understanding of resilience and thriving” (p. 1057). Resilience can be defined as “the ability to reframe one’s adversity in the context of personal growth, meaning making, insight, gratitude, forgiveness, and spiritual awakening” (Lau & van Niekerk, 2011, p. 4). Therefore, thriving and resilience can be considered similar constructs, even though the latter involves gratitude and forgiveness, which are not considered in the former. Both of these constructs are based on making meaning of a traumatic experience. Meaning/sense making is more than a process of attributing something positive to a traumatic event. It involves psychospiritual changes and profound shifts in one’s identity and life outlook (Parry & Chesler, 2005). By reviewing beliefs and world assumptions, one might derive positive explanations for what has happened, assigning to it a positive value. This latter process is named “benefit finding” and is often used synonymously to describe the processes by which survivors find positive elements to face their illness. Family members also play an important role in the patients’ benefit finding (Parry & Chesler, 2005). Previous research has identified family support and cohesiveness as being critical to a positive adjustment after a severe disease (Lewin Newby, Brown, Pawletko, Gold, & Whitt, 2000). This process may be stronger in Hispanic populations, which generally seek more support from their families compared with other populations such as the Americans (Gallo, Penedo, Espinosa de los Monteros, & Arguelles, 2009; Yi & Zebrack, 2010). Nevertheless, Latin families, who had sustained their children when struggling with cancer, have later shown mental and physical problems, and their need for help and support from outside has been highlighted (Yi & Zebrack, 2010). Post-traumatic growth (PTG) refers to positive psychosocial changes experienced as a result of a struggle with highly challenging life events



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(Tedeschi & Calhoun, 1995). Like thriving, PTG is characterized by three positive change categories—perceived changes in the self, in interpersonal relationships, and in philosophy of life—though studies have shown that in cancer patients, changes in the self are less frequent than those associated with interpersonal relationships and life perspectives (Sumalla et al., 2009). The PTG Inventory was created in the 1990s (Tedeschi & Calhoun, 1996), and a positive association between age at cancer diagnosis and perceived positive impact (PPI) was recently found (Zebrack et al., 2012). This suggests that cognitive capacity to acknowledge the severity of life disruption caused by cancer may be an antecedent to later perception of some positive effect. Similarly, when adults who survived childhood cancer were asked to narrate their experience, story coherence was increased in patients who had been older at the time of illness onset (Di Gallo, Amsler, Gwerder, & Burgin, 2003). Interestingly, in one study, PPI was significantly greater among leukemia survivors compared with survivors of all other cancer types (except bone cancer), perhaps because of the relatively longer time spent in therapy (Zebrack et al., 2012). PPI was dramatically lower in central nervous system (CNS)/brain cancer survivors, and the study’s authors concluded that cognitive and behavioral limitations, which are often associated with these tumors, may preclude PPI (Zebrack et al., 2012). This result is consistent with what other studies have found about coping: there was a tendency for coping to correlate with the patient’s intellectual ability (Boman & Bodegard, 2000). Therefore, it seems that coping, PTG, and PPI are mainly cognitive processes and that they are positively associated with an individual’s capacity for meaning making. It has been suggested that the process of meaning making is facilitated by telling one’s own illness story (Frank, 1995). “Personal narratives help people to organise experience and make sense of stressful life events” (Di Gallo et al., 2003, p. 667). Stories can therefore enable patients to repair the damage that illness has done to their sense of life, to make meaning of their experience, and possibly to thrive and become resilient. Helping young cancer patients and their families to create and maintain personal narratives of illness and treatment may be an important clinical task that should not be delegated to psychosocial workers (Di Gallo et al., 2003). A previous study reported that Latin childhood cancer survivors experience emotional distress in recalling the illness experience, and the study’s authors advocated further research to determine whether these findings are unique to the participants in the study (Casillas et al., 2010). Nevertheless, Latino and Spanish speaking patients, who participated in a study based on “photovoice,” a qualitative research method (Yi & Zebrack, 2010), “appreciated the opportunities to ‘vent’ their feelings in interviews and discussions” (p. 8). The experience of surviving childhood cancer, and specifically leukemia, has been explored in North America (Brown et al., 2008; Parry & Chesler, 2005; Zebrack et al., 2012) and Northern Europe (Enskär & Berterö,


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2010) (Table 1). Recently, an American study explored the experience of surviving childhood cancer in Spanish speaking survivors and family members, who lived in the United States (Yi & Zebrack, 2010). However, few studies focused on the perceptions of survivors belonging to a Latin culture, in particular Italian patients, in whom illness and survivorship can be experienced differently. “Involving minorities in survivorship research is important also because their views on the meaning of cancer might be affected by their cultural lenses” (Yi & Zebrack, 2010, p. 2). For this reason, an exploratory study was considered suitable to examine the experience of surviving leukemia in a Latin culture and to determine whether benefit finding is spontaneously reported by Italian survivors when narrating their childhood illness experience. Understanding the lived experience of surviving childhood cancer in a Latin culture may be useful for estimating the cultural appropriateness of internationally standardized instruments for evaluating the impact of that experience on survivors (Zebrack, 2009; Zebrack et al., 2010). Furthermore, culturally relevant research has been advocated to determine who benefits from which types of supportive care resources and interventions (Zebrack, 2011).

Context of the Study Given the multiple challenges presented by childhood leukemia, a psychosocial program aimed at supporting children and their families has been practiced since 1984 at the Haematology Centre of the Paediatric Unit of San Gerardo Hospital (Monza, Italy), which receives patients from mainly northeastern Italy. This Centre treats approximately 250 patients each year, about 150 (60%) of whom are diagnosed with leukemia. According to National Health System policies, all services are offered to patients free of charge. The psychosocial program began when medical advances in the treatment of childhood leukemia made curing the disease a possibility for a large percentage of patients. The program aimed to foster a therapeutic alliance between the health care team and patients to offer the best possible quality of life to the children and their families. Over time, we set up a team that in addition to health care professionals includes one or two psychologists, a social worker, teachers, and volunteers. Moreover, we supported the establishment of a parents’ association (named Comitato Maria Letizia Verga), which addresses psychosocial issues. Specific attention has been paid to communication of the diagnosis to the child (Jankovic, 1994) and family (Masera et al., 2003) and to promoting school services in hospital (Masera et al., 1997). Art therapy interventions (i.e., drawing, playing) were also developed with the aim of improving creativity, which has been associated with resilience since the 1980s (Flach, 1980). For younger children, play therapy is a common way to work through emotions, whereas older children are

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aMost

cited themes.

1. Recalling the sense of apprehension in the prediagnostic phase 2. Remembering illness and therapy as a very distressful experience, feelings of psychic pain 3. Having memories of parents’ suffering 4. Perceiving family as a source of support during the illnessa 5. Soliciting help from others 6. Finding inner strength, desire to fight, sense of competence and control 7. Experiencing body changes, feeling different 8. Experiencing difficulties in social relationships, withdrawal from the social world 9. Recognizing a radical transformation of the self, perceiving increased psychological maturity, a sense of growtha 10. Experiencing greater compassion and empathy, deeper relationships with othersa 11. Setting new values and priorities, developing a new life outlook, experiencing a deeper appreciation for life 12. Meaning making 13. Giving something back, gratitude, choosing a helping careera 14. Recognizing one’s own vulnerability 15. Fear of recurrence

Theme

X X

X

X X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X X

X

Brown et al. (2008) USA

X

X

X

X

Salick & Auerbach (2006) USA

X

X X

Parry & Chesler (2005) USA

X

X x

X

Di Gallo et al. Karian et al. (2003) (1998) USA Switzerland

X

X

X

X X

X

X

1 1

3 5

3

5

6

2

2

X

2 6

2

1

Frequency

1 4 X

Lau & van Niekerk (2011) South Africa

X

X

Enskär & Berterö (2010) Sweden

TABLE 1 Themes Emerging from Qualitative Studies on the Lived Experience of Surviving Childhood Cancer/Medical Trauma


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often treated with cognitive behavioral therapy techniques (Stevens, Caron, & Biondi, 2012).


METHOD As the goal of this exploratory study was to generate new knowledge concerning a phenomenon about which little was known—surviving childhood leukemia in the Italian culture—a grounded theory (GT) approach was chosen (Glaser & Strauss, 1967). This qualitative research approach allows one to construct “theories” (or fresh knowledge) about specific phenomena. From among the possible GT methods, we chose the approach of Strauss and Corbin (1990), which allows the use of an existing conceptual framework, even if derived from other contexts, as a starting point for theory construction. The GT approach focuses on individuals, named informants, with deep knowledge of the phenomenon being studied, and it aims to examine participants’ personal experiences and perspectives while limiting researchers’ personal judgments. The results of GT-based research are presented in the form of macrocategories or themes reflecting the participants’ ideas and concerns that emerge during data analysis (e.g., observation/interview transcripts, and written narratives) (see Data Analysis section).

Participants The study sample consisted of participants who (1) had been treated for leukemia at the Haematology Centre of the Paediatric Unit of San Gerardo Hospital, Monza, Italy, (2) had finished therapy at least 5 years previously and were in remission, and (3) were 18 years or older at the time of participation in the study. In 2005, we reviewed the hospital charts of all former patients and identified 300 patients who met the inclusion criteria. The Centre contacted these patients by post or e-mail, and 106 (35%) responded with letters in 2006. As the patients were not contacted by phone, we do not have information about their motivations for not participating in the study. The research received ethical approval by the Maria Letizia Verga Foundation’s Committee; in Italy, no hospital’s ethical committee approval was required for nonexperimental studies with patients, at the time of the study (2005). Participants received written information about the research aims and procedures in the letter that invited them to narrate their story. Before the submission of this article, an Italian book based on the participants’ written narratives of surviving leukemia was edited by two of the authors (Masera & Jankovic, 2008), and participants gave extensive consent to the investigators to use extracts from their narratives for research and training purposes.


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Data Collection Research based on personal written accounts about illness, suffering, and healing has recently increased (Hurwitz, Greenhalgh, & Skultans, 2004), thanks in part to the dissemination of the narrative-based medicine model (Charon, 2006). Written narratives can provide access “to many essential, well thought ideas” (Salander, 2002, p. 729), as the narrator wants to present them. This method of data gathering saves interview time and probably reduces the risk for interview bias. Furthermore, written narratives allow to avoid difficulties arising from using standard interview techniques with some individuals (patients belonging to minority ethnic groups, or with speech problems) (Entwistle, Tritter, & Calnan, 2002). On the other hand, one weakness of this method is the absence of dialogue, which might otherwise allow the researcher to ask further questions, especially when the narrative is not particularly informative. Furthermore, written narratives from patients with poor writing skills, possibly due to lack of education and/or age, may not be useful. Nevertheless, writing implies a reflective process, and this can help to give meaning to the illness experience. For this reason, the written narrative can be considered a valuable data source, especially in exploratory studies. This method has been used with children (Nordyke et al., 2010) and doctors (Wu, Rapport, Jones, & Greenhalgh, 2004). The invitation to write about the experience of surviving leukemia was sent by post and/or e-mail to 300 survivors in 2005. The presentation letter informed participants about the research aims and procedures. Patients were invited to freely write about their experience, with no restrictions on the contents, the length, and the form of their writings. No incentives were provided. Participants’ responses were typed, if handwritten, and a code (L1–L106) was assigned to each letter. Data were treated as strictly confidential, and participants’ words were reported without any disclosure of their identities.

Data Analysis Consistent with narrative psychology (Murray, 2008), and with previous research on written narratives (Salander, 2002), we analyzed the texts in two ways. First, the narratives were analyzed from a structural point of view. Letter constructions were identified by reading them several times, discussing them until agreement was reached among researchers, and grounding the detected structures in the letters themselves. The second and main analysis focused on the content of the written narratives. This phase of the analysis “can lead to labelling certain accounts as being of a certain type that illustrates their theoretical content” (Murray, 2008, p. 120). Written narratives were examined according to GT methodology using an open coding process (Strauss


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& Corbin, 1990). First, each written narrative was read several times to grasp its global meaning. Then, selective coding was carried out: meaning units (labels) in the written narratives were individuated independently by two researchers, who reported quotes from the letters. The labels were discussed and reviewed by the researchers until agreement was reached. Subsequently, categories were created by seeking similarities and differences among the contents of the labelled experiences (comparison and categorization). The researchers independently assembled groups of labels into categories and discussed their analysis until an accord was established. Consistent with consensual qualitative research procedures (Hill et al., 2005), categories that applied to at least two thirds of the cases were labelled “general,” those that applied to more than one half of the cases, but less than two thirds were “typical,” and categories that applied to fewer than one half of the cases, but more than two, were labelled “variant.” The main topics emerging from the narratives were similarly identified and grouped into macrocategories. To confirm the structure of the findings, the original narratives were reread and the findings were modified as necessary.

RESULTS Participants A total of 106 survivors responded. Their demographic and medical characteristics are shown in Table 2.

Structure of the Narratives Regarding the structure of the written narratives we received, three types of letter were individuated: TABLE 2 Demographic and Medical Characteristics of Participants Characteristic Age at study, years Gender, n (%) Age at diagnosis, years Diagnosis

Value Mean 25 (range 18–34) Male: 44 (41%), Female: 62 (59%) Mean: 7.5 (range 1–17) 1. Acute lymphoblastic leukemia in first complete remission (n = 68, 64%) 2. Acute lymphoblastic leukemia after relapse and stem cell transplantation (n = 6, 6%) 3. Lymphoma (n = 5, 5%) 4. Acute myeloid leukemia (n = 4, 4%) 5. Acute lymphoblastic leukemia after relapse treated with chemotherapy (n = 3, 3%) 6. Another blood cancer diagnosis (n = 20, 18%)



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1. Simple thank-you letters (TYLs) to health care professionals (n = 15, 14%). Of these, 10 (67%) were written by participants who at the time of diagnosis were ≤ 6 years. Five of these letters (33%) were written by males. 2. Letters that briefly described the illness experience, focusing mainly on what happened after the first hospital discharge (brief story letters, BSLs; n = 29, 27%). Two of these letters (L10 & L34) were written by parents, and two others (L5 & L19) were a TYL and a BSL. Of these 29 letters, 16 (55%) were written by participants who at the time of diagnosis were ≤6 years, and 14 (48%) of the BSLs were written by males (plus two by males’ parents). 3. Letters that narrated quite deeply the whole illness experience (full story letters, FSLs; n = 61, 58%). Of these 61 letters, 25 (41%) were written by participants who at the time of diagnosis were ≤6 years, and 23 (38%) were written by males. One letter was empty (L104). No correlations between the type of letter and the patient diagnosis or gender were found.

Themes Emerged from the Narratives In the content analysis, we considered only BSLs and FSLs (n = 88, as L10 & L34 were not considered). Five macrocategories (themes) emerged from the 88 letters, and each theme contained at least one category. The frequency of each category, which was classified as general, typical, or variant, in each theme is reported below (see also Table 3). MEMORIES

OF THE

LEUKEMIA EXPERIENCE

Four categories were generated from this theme: 1. Supportive healthcare staff (general): Most survivors reported vivid and positive memories of the health care staff. In particular, the staff’s constant efforts to effectively communicate with a child, using successful strategies such as cartoons and stories, were recalled (see examples of participants’ quotes in Table 4). 2. Personal memories: being a seriously ill patient (typical): Many participants reported vivid memories about their leukemia experience; only five participants stated that they had a vague memory of that period, mostly because they were too young at the time. Leukemia was remembered by most as a very negative experience, a kind of “nightmare” (L41). The most frequently cited memory was the marrow collection, and the pain that it

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TABLE 3 Themes/Categories and Their Frequencies in the 88 Brief-Story and Full-Story Letters


Theme/Category

Type

I. Memories of the leukemia experience General 1. Supportive health care staff a 2. Personal memories: being a seriously ill patient Typical 3. Reminiscence of the healing phase Variant 4. Parents’ suffering Variant II. Strategies to cope with leukemia General 1. Receiving support from parents and friendsa 2. Developing strength of mind Variant 3. Having faith Variant 4. Doing creative activities Variant 5. Taking care of a pet Variant III. Changes following the leukemia experience General 1. Changes in the self a 2. Body changes and consequent stigma Variant 3. A new life outlook Variant 4. Different relationships with other people Variant 5. Feeling like a special/lucky person Variant IV. Sense of gratitude and desire to give something back 1. Sense of gratitude Variant 2. Desire to give something back Variant V. Current perceptions/concerns about leukemia 1. The illness as a part of the self Variant 2. Fear of recurrence Variant 3. Trust in medicine Variant aMost

Frequency Number (%) 61 44 20 18

(69) (50) (23) (20)

70 28 15 11 4

(80) (32) (17) (13) (5)

85 38 20 18 7

(97) (43) (23) (20) (8)

28 (32) 20 (23) 21 (24) 11 (13) 4 (5)

cited themes.

caused. Fear and anger were the most frequently cited emotions related to the period in which leukemia was diagnosed and cured. Though the participants were children at the time, they had vivid memories of being seriously ill patients. Despite these negative memories, some survivors also remembered their will to fight and to continue living. 3. Reminiscence of the healing phase (variant): Some participants had a bright reminiscence of their healing phase. It was remembered as a kind of liberation, or the experience of being freed. Happiness and a sense of being blessed were experienced in this phase. One patient expressed her mood in the healing phase, saying that she felt “like a person who has won a lottery . . . whose prize was my life!” (L92). 4. Parents’ suffering (variant): For some participants, their parents’ pain and sufferance were vivid memories, too. Some survivors even remembered how they, as children, tried to bear the burden of their parents’ grief. A mother wrote, My husband and I were overcome by desperation, that made us incapable of articulating any defense, but our fingers joined together into


587

TABLE 4 Quotations by Categories


Categories

Quotes (samples)

I. Memories of the Leukemia Experience 1. Supportive “I was very positively impressed by the hospital; the environment was healthcare staff very nice [. . .]. Doctors and nurses, all very competent and polite, continuously explained to me what they were doing and patiently answered all my questions.” (L72) “Doctor J. brought me to a small room for seeing a short cartoon. We were alone, me and him, and watched a cartoon that very simply explained my illness, enlightening what was going on.” (L56) “Doctor M. asked to me: ‘How do you feel today?’ I told him: ‘Shouldn’t you know it better than me?’ He kept silent for a while and then said that it was also important knowing my state of mind.” (L58) “We knew very well how severe was this disease.” (L53) 2. Personal “I found myself in an unknown world. . . all around there were bold memories: children, with fear and hope in their eyes.” (L29) being a “I had fear of dying.” (L96) seriously ill patient 3. Reminiscence “I remember the best day in my life: May the 5th, 1990. I took the of the healing airplane from Milano to Naples: they stated I was healed.” (L75) phase “My crying mother entered the room, and in that moment I understood 4. Parents’ that something serious was affecting my body.” (L29) suffering (and “My father came to say I should have been serene, but after a while he children’s went out in the corridor, with tears in his eyes.” (L3) attempt to give them support) “When they had to go back home, at night, it was the saddest moment of the day: I tried to screw up courage in front of them, but when they left, I cried.” (L91) II. Strategies to Cope with Leukemia “My mother was always standing by me, also during the night.” (L21) 1. Receiving “My greatest luck is named B, my mother. She never got disheartened, at support by parents least in front of me.” (L52) “My father was always encouraging me and saying ‘don’t worry, you will get it.”’ (L37) “I remember Mrs. C, the elementary school teacher. To avoid I were behind my studies, she came to my home in the afternoon, to give me lectures and homework.” (L52) 2. Developing “Your mind has such a power . . . in some occasions you tend to strength of underestimate it.” (L6) mind “I wanted to live and recover: This was fundamental to overcome the disease.” (L52) “You need something that comes from your inner, a strength that allows you to react to terrible situations, such as those arising from the leukemia experience.” (L86) 3. Having faith “I think that it was God’s hand that helped me healing” (L39). “I thank God for all the things he did and for the strength he gave me.” (L93) “After two years in and out the hospital, the MIRACLE: I was healed.” (L66) 4. Doing creative “I remember that drawing was the only think that allowed me to avoid activities thinking about my situation.” (L53) “Theatre is what makes me feel OK. When I was a child I used to invent shows.” (L67) (Continued on next page)

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TABLE 4 Quotations by Categories (Continued)


Categories

Quotes (samples)

5. Taking care of “Doctors consented me to take a dog. . . so Raska arrived: a hairy wad a pet that with his love was able to make us smile, while we would have only wanted to cry.” (L53) “I remember when my parents and my brother decided to give me a puppy. They never had consented to take a dog since that day . . . [I remember] Pongo, the sweet friend that kept me company in that period.” (L3) III. Changes Following the Leukemia Experience 1. Changes in the “[Following the leukemia experience] I started thinking that I was better self than the others; I understood that I had an out of ordinary, inner strength.” (L96) “I am a more sensitive person and I have more inner strengths than my peers.” (L30) 2. Body changes “I had been isolated by my classmates, who thought I had an infective and disease, that I could convey by playing with them.” (L30) consequent “My classmates beat me every day, because I was diverse.” (L67) stigma 3. A new life “[I have learned] to live caring just for the most important problems.” outlook (L67) “[I live] always fighting for things in which I believe.” (L51) “[I have learned] living in the present.” (L56) “[I live] trusting in friendship.” (L18) “[I live] preserving life.” (L89) 4. Different “[I feel] a better person, especially in human relationships.” (L59) relationships “I have discovered the real meaning of friendship.” (L18) with the other people “Those who have had (or will have) the fortune of going through the 5. Feeling a leukemia experience, being able to defeat it, they only apparently can special/lucky expect a normal future [. . .]; as a matter of fact, they should expect to person have a very special life, as they will be able to experience special feelings, accessible only to those that in their lives had fought and won.” (L21) IV. Sense of Gratitude and Desire to Give Something Back 1. Sense of “I would like to thank all the physicians that still now are interested not gratitude only in my disease, that is defeated, but also in my feelings and thoughts.” (L23) “I still keep with care the cards and coupons that Dr. J. gave me.” (L30) “I brought to them my marriage sugarcoated almonds,1 they are part of my life.” (L28) 2. Desire of “[Suffering from a medical trauma] made me generous. . . at any rate I giving have a great will for living and donating to the world all the things that something life gave me.” (L67) back V. Current Perceptions/Concerns About Leukemia 1. The illness as a “It is part of my identity, without it [leukemia] I wouldn’t be myself, I part of the self wouldn’t be the same person.” (L29) “What I am couldn’t be without what I have been.” (L14) “I perceive a continuity of my identity between past and present.” (L79) “I have learned to live with my past.” (L86)


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TABLE 4 Quotations by Categories (Continued) Categories

Quotes (samples)


2. Fear of recurrence 3. Trust in medicine

“Fear and anxiety often go with me.” (L101) “Among us, a positive faith in science is common.” (L1) “Trust physician and their science. They are good people and they’ll do all their best to save your sons. Medical technologies have been further improved [in the last years].” (L22)

a. In Italy, sugarcoated almonds are personally delivered before marriage only to parents and close friends. Receiving sugarcoated almonds means being considered part of a person’s family or having an intimate relationship with him/her.

a strong fist, to face the situation with courage and to protect us from the illness assault that was threatening our family. (L10)

Even so, parents had a fundamental role in helping them cope with leukemia. STRATEGIES

TO

COPE

WITH

LEUKEMIA

Six main strategies for coping with leukemia were reported by participants: 1. Receiving support from parents (general): As reported above, parents (especially mothers) had a fundamental role in helping patients to cope with leukemia. Besides giving direct assistance during the hospitalization, parents provided emotional support to their sick children during the battle against leukemia. In some cases, teachers, volunteers, and friends also greatly helped the children to cope with leukemia. Meeting others who had experienced leukemia was perceived as very useful and made some patients feel stronger in fighting their disease. 2. Developing strength of mind (variant): In addition to the support received from others, some survivors remembered that they had activated personal resources such as strength of mind as coping mechanisms. In one participant’s opinion, the will to live was fundamental. For another participant, the mind could even influence the body status. 3. Having faith (variant): In some cases, the patient’s strength derived from his or her faith. Some participants thought they were healed thanks to God and that they have been blessed. 4. Doing creative activities (variant): Some participants recalled that playing, drawing, and watching cartoons were helpful in dealing with the hospitalization. 5. Taking care of a pet (variant): When survivors went home, taking care of a domestic animal, especially a dog, was in some cases a valuable strategy

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for coping with leukemia. It helped them to suspend negative thoughts and feelings about their situation.

CHANGES FOLLOWING

THE

LEUKEMIA EXPERIENCE


After leukemia, many changes occurred in the patients: 1. Changes in the self (general): Referring to the self, many participants stated that after leukemia, they felt stronger, or even better, than their friends who had not experienced a medical trauma. They thought that they were more sensitive and richer thanks to the leukemia experience. Patients understood that their experience made them grow and mature more quickly. In any case, leukemia was considered a part of the individual’s identity. 2. Body changes and consequent stigma (variant): Body changes were reported most often in the phase immediately after therapeutic intervention. Among the changes, alopecia and weight gain were the most common. Stigma and social isolation related to body changes were experienced by some patients. Feeling “normal” became a very hard task for some leukemia survivors. Some reported a sense of exclusion from a normal childhood and adolescence due to their illness. Consequently, they could not attend some vital appointments, such as military service, that allow the transition into adult life.1 The leukemia experience was in some cases an obstacle to finding a job or creating a stable relationship with a partner. For all these reasons, some participants believed that their passage to adulthood was more difficult and delayed. 3. A new life outlook (variant): The leukemia experience taught the survivors to enjoy small aspects of everyday life, to play down futilities, and to discover the positive side of everything and everyone. One participant wrote that the illness experience was a kind of “training for life” (L86), allowing him to face difficulties with a special inner strength, differently from other people. In brief, leukemia taught some survivors a fundamental: the importance of life itself. 4. Different relationships with other people (variant): Some respondents believed that the suffering caused by leukemia made them more sensitive and empathetic. In fact, participants thought they were perceived as people who were particularly attentive toward others, “especially towards those who are suffering” (L32). 5. Feeling like a special/lucky person (variant): Some participants thought that if they had not gone through the leukemia battle, they would not be as special as they are. They perceived themselves as different from ordinary people because they can experience feelings that only those who have


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suffered and fought can experience. For this reason, some participants considered themselves to be lucky. SENSE

OF

GRATITUDE

AND

DESIRE

TO

GIVE SOMETHING BACK


Consistent with the feeling of being lucky owing to having experienced leukemia, some participants expressed a sense of gratitude and a need to give back some of what they received. 1. Sense of gratitude (variant): Special gratitude was expressed to the San Gerardo health care team, which cared for patients during the acute phase of their illness and continues to care for survivors by supporting them and promoting well-being; for example, the invitation to write about their leukemia experience was explicitly appreciated by some participants. Many respondents disclosed delightful memories about the health care staff, underlining how they were a part of their childhood and later became a part of their lives. Bonding with the staff was expressed by several survivors. 2. Desire to give something back (variant): In some cases, gratitude was related to a desire to give something back. Many of these participants stated that they had volunteered for benefit organizations and/or chosen a caring profession for this reason. However, this did not mean that the illness experience had been completely overcome, as emerges in the next theme. CURRENT PERCEPTIONS/CONCERNS

ABOUT

LEUKEMIA

Many participants stated that they have not left the leukemia experience behind and still consider it a part of them. Even those who have been declared healed express fear of recurrence. 1. The illness as part of the self (variant): About 25% of the participants stated that the leukemia experience was a part of who they are. One participant affirmed that he does not want to forget his illness experience, from which he learnt so much. Other participants pointed out the pain associated with leukemia and that it is not a pleasant memory, though they cannot forget it. 2. Fear of recurrence (variant): Despite being declared as healed, some participants expressed a fear of recurrence, stating that for this reason, they are more attentive to signs of sickness. 3. Trust in medicine (variant): Even with worries about recurrence, some respondents learnt to trust in medicine and its improvements, recognizing that they are alive because of improved diagnostics and therapies.

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DISCUSSION This study can be differentiated from others at least in three elements. First, it was a participant-driven study, because survivors autonomously decided what and how to write about their childhood cancer experience. Second, the study was conducted with patients not only belonging to a Latin culture, but also living in a Latin country, exploring if benefit finding was perceived by these patients too, as by survivors living in non-Latin countries. Third, an innovative method (written narratives) was used, that has been considered useful not only for data gathering, but also to narrate the cancer experience, a process that can promote self-reflection, meaning making and well-being (Di Gallo et al., 2003). It seems that narrating the story of childhood cancer experience was positively perceived by the respondents: FSLs are the majority of the delivered letters. Simple TYLs accounted for a minority (14%) of the letters received, and most of these (67%) were written mainly by participants who were ≤6 years when diagnosed with leukemia. Consistent with Zebrack et al. (2012) and Di Gallo et al. (2003), our patients who were younger at the time of illness onset were less able to narrate their story. This could suggest, in future interventions for childhood cancer survivors, that the invitation to narrate the experience may not be appropriate for those patients who were ≤6 years when diagnosed with leukemia. BSLs accounted for 27% of the letters received. About one half of these letters (55%) were written by participants who were ≤ 6 years at the time of diagnosis. These stories concentrated on what happened after the first hospital discharge and were less focused on the painful experience of the hospitalization, from physical and psychological points of view. We do not know why these patients did not mention that part of their experience. One possible explanation is that it was so painful that they blocked it out. The majority of the letters received (58%) were FSLs. Only 41% of these letters were written by participants who were ≤6 years at the time of diagnosis, consistent with the hypothesis that patients who were older at the time of diagnosis remember more about their illness experience. In BSLs and FSLs, the participants conveyed very positive memories of the hospital staff and expressed their gratitude (general theme). Vivid memories of the health care staff and even bonding with them are not common themes in the literature on patients who survived childhood cancer (Yi & Zebrack, 2010). Cancer patients from Latin countries may tend to develop a more intense relationship with health care professionals, and this must be taken into consideration when planning supportive care interventions. That relationship can be a very important resource not only for coping with childhood cancer, but also for meaning making. If we consider that the TYLs mainly expressed thankfulness, we can say that almost all of the leukemia survivors in this study conveyed a sense of



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gratitude, which was proposed by Parry and Chesler (2005) to be one of the elements that characterize resilience. Memories of the leukemia experience also included suffering and pain caused by hospitalization (typical theme). Childhood cancer and the related medical trauma were reported as very distressing experiences, especially in FSLs, which is consistent with previous studies (Di Gallo et al., 2003; Salik & Auerbach, 2006; Yi & Zebrack, 2010). Despite the heavy burden that leukemia places on a child, especially when the child also bears the parents’ suffering, many participants recalled how they had a will to survive from the very beginning of the illness experience, when they were still hospitalized. Some patients were able to find inner strength, choosing to take control of their lives and refusing to give up (Enskär & Berterö, 2010; Karian et al., 1998; Parry & Chesler, 2005; Salik & Auerbach, 2006). For this purpose, patients used internal strategies such as developing strength of mind as well as external strategies such as seeking help from the others, especially parents (Enskär & Berterö, 2010; Karian et al., 1998; Parry & Chesler, 2005; Salik & Auerbach, 2006). As shown in previous studies, family had a fundamental role in helping our patients cope with leukemia (Brown et al., 2008; Di Gallo et al., 2003; Enskär & Berterö, 2010; Karian et al., 1998; Parry & Chesler, 2005; Salik & Auerbach, 2006; Yi & Zebrack, 2010). This was true even when parents were perceived to be suffering more than the patients in dealing with the illness, which is consistent with earlier reports (Di Gallo et al., 2003). Our finding that both parents were extremely supportive during the acute phase of leukemia and subsequent treatment is partially divergent from a previous study (Zebrack, 2011). Compared with Italian mothers, Italian fathers did not appear to experience a more difficult adjustment to their child’s cancer. Family members also played an important role in the patients’ benefit finding (Parry & Chesler, 2005). Previous research has identified family support and cohesiveness as being critical to a positive adjustment after a severe disease (Lewin Newby et al., 2000). This process may be stronger in Hispanic populations, which generally seek more support from their families compared with other populations such as the Americans (Gallo et al., 2009; Yi & Zebrack, 2010). Given that receiving support from parents and friends was a general theme of the responses in this study, family may play a pivotal role in the ability to face cancer and develop resilience in Italian populations, as in other Hispanic populations. Nevertheless, Latin families, who had sustained their children when struggling with cancer, have later shown mental and physical problems, and their need for help and support from outside has been highlighted (Yi & Zebrack, 2010). From these considerations it can descend the suggestion, for healthcare professionals, to pay special attention to the patients’ families, to make them able to sustain their children.


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Consistent with other studies (Gallo et al., 2009), having faith was another strategy employed by our patients to cope with their leukemia. This highlights the role that religion can have in Hispanic populations, especially when facing the experience of severe illness (Yi & Zebrack, 2010), but it should be noted that faith was only a variant category, and not a general one, in this study. Creative activities and play were other useful approaches for coping with leukemia, reaffirming findings of the American Academy of Pediatrics Child Life Council and Committee on Hospital Care (2006). In addition, taking care of a pet, especially a dog, after the patient returned home was another useful coping strategy, and this was recently suggested for improving the quality of life among hospitalized pediatric cancer patients (Urbanski & Lazenby, 2012). This is a suggestion that could be given to parents, when bringing home their child. Many participants revealed a process of benefit finding, especially related to the self, which became stronger after the leukemia experience (general theme). Anholt, Fritz, and Keener (1993) documented significantly more positive feelings in the self-concept of survivors of a childhood cancer, when compared to a control group. Improvement in self-conception has been found in almost all qualitative studies on surviving childhood cancer (Table 1). In line with previous research, some participants declared that they had become better people because of their leukemia experience (Brown et al., 2008; Salik & Auerbach, 2006). Parry and Chesler (2005) identified perception of a change of the self as one of the elements that characterize thriving. Post-traumatic growth is characterized by perceived changes in the self too, though these changes were reported to be less frequent than changes in life outlook and relationships (Sumalla et al., 2009). This suggests that the processes at work in our participants were primarily thriving and resilience, rather than post-traumatic growth, even if other elements that characterize thriving and resilience (e.g., changes in relationships and life outlook) were not present as general categories in their letters (Parry & Chesler, 2005). A new life outlook and different relationships with other people were cited by 20 (22.7%) and 18 (20.4%) of the participants, respectively, making them variant categories. In a previous study (Parry & Chesler, 2005), new values and priorities (life outlook) were reported by 57% of the participants; and greater compassion and empathy, by 61%. However, the participants in this previous study (Parry & Chesler, 2005) were asked specifically about positive psychological changes following the leukemia experience, whereas some of our participants, in addition to personal depth and maturity, spontaneously reported a new life outlook and a different way of relating to others. Furthermore, when we also consider TYL letters, gratitude emerges as a general theme in the narratives. Gratitude, another common theme in studies on surviving childhood cancer (Brown et al., 2008; Karian et al., 1998; Salik &



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Auerbach, 2006; Lau & van Niekerk, 2011; Yi & Zebrack, 2010), is thought to be a characteristic of resilience (Parry & Chesler, 2005). In general, the leukemia experience appears to have helped the survivors in this study to become better people. Consistent with Zebrack (2000, 2011), and Salick and Auerbach (2006), many survivors wrote that leukemia generated new strengths that allowed them to better overcome life difficulties. If these individuals had not experienced leukemia, they might not have developed the fortitude to achieve as they have done. This process can be interpreted as a psychospiritual change, which suggests a deeper process incorporating thriving and resilience (Parry & Chesler, 2005), as shown by research on childhood cancer survivorship in non-Latin contexts (Zebrack, 2011). In addition to mental changes, the participants also underwent physical changes, mainly alopecia and weight gain, which precipitated feelings of being physically different from others, especially after therapeutic intervention (variant category) (Enskär & Berterö, 2010; Lau & van Niekerk, 2011). Consequently, stigma and social isolation were reported by some respondents, as observed previously for patients who experienced childhood cancer or other medical traumas (Enskär & Berterö, 2010; Salik & Auerbach, 2006; Yi & Zebrack, 2010). This can mean that stigma is a transcultural process, when a person gets sick and has to face cancer. The health care team should pay particular attention to the strategies that can help patients avoid stigma and isolation. Although a few participants felt marginalized by other people, most expressed a sense of gratitude and a desire to give something back, as shown in earlier studies on cancer and medical trauma survivors (Brown et al., 2008; Karian et al., 1998; Lau & van Niekerk, 2011; Parry & Chesler, 2005; Salik & Auerbach, 2006; Yi & Zebrack, 2010). Some participants reported a current interest in helping others in general and those who have received a cancer diagnosis in particular, often through volunteer work. Growth followed an involvement in giving something back by helping leukemia patients or the community in general. This new altruistic vision of life affected career choices by some participants, who became more interested in caring professions or other professions aimed at empowering people. About 25% of the participants considered the illness to be a part of them. Again, this may mean that they think they would not have become the same people had they not experienced leukemia. Similar ideas were stated by some Swedish patients who suffered from childhood cancer (Enskär & Berterö, 2010) and also by Latino patients living in the United States, who “felt a strong and positive sense of identity” (Yi & Zebrack, 2010, p. 6). Like many cancer survivors, some participants feared a recurrence, even though their doctors confirmed that they had been healed (Brown et al., 2008; Crist & Grunfeld, 2012; Zebrack, 2011). Nevertheless, some

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respondents stated that they learnt to trust in medicine owing to the very positive experience they had at San Gerardo Hospital.


Clinical Implications For many years, the effort to care for a child with cancer has been characterized as multidisciplinary, multi-institutional, and international, involving highly cooperative and collaborative physicians, nurses, psychologists, social workers, and allied health care professionals, all working together across ¨ national borders (Ozdemir, 2012). Based on what we learned from narratives of these long-term survivors, we started programs oriented and tailored to their needs, when the child goes off-therapy, focusing on the sequelae specific to each form of illness, treatment, toxicity, and future problems. We translated into action some relevant suggestions from the literature, that point out the importance of making the patient reflect on how to establish relationships with other people (how to talk about their illness experience), and how to preserve their body appearance. We also strengthened the importance of creative and amusing activities, including taking care of a pet. Moreover, it is important, and critically necessary, to follow the person until he/she is considered “cured” (at about 5 years since diagnosis); after that time, one should not overmedicalize the survivor but help him or her to make the transition to normal health-care status. We have seen our biopsychosocial approach has become a model for the increasing integration of the psychosocial aspects in the treatment of subjects with such chronic diseases. We have become increasingly aware of the importance of psychosocial research in developing different, more patient-centered clinical approaches.

Study Limitations This study is based on self-reported outlooks, meaning that other perceptions and ideas about the illness experience might have emerged if the study had been conducted through interviews or focus groups. Furthermore, only one third of the patients who received the invitation to narrate their experience participated in the study, and this exposes our research to nonresponse bias. Although our response rate can be considered low, response rates to mail surveys vary according to the participants studied and the techniques used (Asch, Jedrziewski, & Christakis, 1997). We must consider that our survey was based on freely written narratives, which can be more challenging than filling out a questionnaire. However, because our aim was to explore what patients who survived childhood leukemia spontaneously reported about their individual experiences, and not to generalize to all Italian leukemia


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survivors, the issue of representativeness is not a critical concern at this stage. Nevertheless, the sample does underrepresent people from central and southern Italy, who are generally not referred to the Haematology Centre of San Gerardo Hospital.


CONCLUSIONS Our exploratory study suggests that several elements that characterize the experience of cancer survivors in other cultures (North American and North European), developing a perceived positive impact, are also spontaneously reported by patients who belong to a Latin culture. Thus, current internationally standardized instruments to evaluate the impact of childhood cancer on survivors (Zebrack, 2009) could be considered culturally appropriate for Latin contexts. The need to compare the experiences of different groups of people through standardized instruments has been advocated in the field of cancer research (Entwistle et al., 2002). Surviving childhood leukemia fostered a radical transformation of the self in almost all of our patients, as seen in most similar studies conducted in other countries. Some participants experienced deeper relationships, developed a new life outlook, and had a sense of gratitude or a desire to give something back. These findings are consistent with the meaning-making process, which can foster benefit finding, thriving, resilience, and quality of life (Parry & Chesler, 2005; Zebrack, 2000). Nevertheless, not all of the survivors of childhood leukemia who participated in this study showed evidence of benefit finding. Unlike in other studies on surviving childhood cancer, our participants put great emphasis on the role that health care staff had played in accompanying patients through the burdensome journey of leukemia. Many participants revealed that they bonded with some doctors, nurses, and/or social workers, and some wrote that their health care providers had become a part of their lives. It has been suggested that it is important “to create and tell (and retell over time) a story [of the patient] with the disease and treatment” (Di Gallo et al., 2003, p. 1070) to promote a coherent life and well-being in cancer survivors; this has been identified as a significant clinical task for all professionals working in pediatric oncology. We wonder about the role that written narratives had in the process of participants’ making meaning of the childhood leukemia experience and eventually in promoting benefit finding. Some participants appreciated the invitation from the hematology center, but two thirds of the targeted participants did not respond. This may indicate that narrating the illness experience was perceived as too painful, as found in other studies conducted with Hispanic patients (Gallo et al., 2009). Further research on factors that contribute to benefit finding following childhood cancer among patients belonging to Latin cultures is needed. The


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inclusion of benefit finding in the agendas of international scientific committees, meeting programs and long-term follow-up guidelines for childhood cancer survivors, has been advocated (Masera, Chesler, Zebrack, & D’Angio, 2013). Supportive care for cancer survivors should consider not only late complications (i.e., posttraumatic stress disorder), but also post-traumatic growth and benefit finding as possible positive late effects of childhood cancer. As Tedeschi and Calhoun (1995) recommended, clinicians must be tuned to the positive sides discovered by survivors and encourage them (Yi & Zebrack, 2010). From our research it emerges that childhood cancer survivors may report benefit finding even when they belong to a Latin culture, consistent with Yi and Zebrack (2010). To foster post-traumatic growth and benefit finding, the usefulness and practicality of creating and maintaining personal narratives, sustained by health care professionals, should be further researched, especially in Latin countries.

ACKNOWLEDGEMENTS The authors thank Dr. Franca Parizzi for her initial analysis of the narratives and Dr. Carlo Clerici for his suggestions on the manuscript. Special thanks are given to the cancer survivors who provided their written accounts.

FUNDING Comitato Maria Letizia Verga partially funded this study.

NOTE 1. In the 1980s, military service was compulsory for Italian males. Only disabled and ill people were exempt from duty.

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