551059

research-article2014

QHRXXX10.1177/1049732314551059Qualitative Health ResearchFreda and Martino

Article

Health and Writing: Meaning-Making Processes in the Narratives of Parents of Children With Leukemia

Qualitative Health Research 1­–12 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314551059 qhr.sagepub.com

Maria Francesca Freda1 and Maria Luisa Martino1

Abstract There is literary evidence stating that expressive writing affects health outcomes. Nevertheless, the processes underlying its benefits remain unclear. In our previous article, we described the benefits of writing; in this article, we investigate the meaning-making processes underlying the traumatic experiences of parents of children with leukemia in off-therapy. We collected the writings of 23 parents and grouped them according to the parents’ psychological outcome (low/good/high) with respect to anxiety, as assessed during a follow-up. We qualitatively analyzed the texts written by parents with good psychological outcomes to highlight their main meaning-making processes, that is, how they put into words the shattering experience, reordered the events, connected their emotions and the events, reevaluated the event, and reconstructed the time process. We found that parents with low/high outcomes articulated these processes differently. Furthermore, we discussed the uses and functions of written narration for each group. Keywords cancer, psychological aspects; caregivers / caregiving; children, illness, and disease; constructivism; health and wellbeing; health promotion; illness and disease, experiences; narrative inquiry; trauma Researchers have consistently reported the benefits of expressive writing for mental and physical health (e.g., Frattaroli, 2006; Frisina, Borod, & Lepore, 2004; Martino, Freda, & Camera, 2013; Martino, Onorato, D’Oriano, & Freda, 2013). In most studies, they have largely focused on evaluating health outcomes (Creswell et al., 2007; Smyth, 1998). However, there has been little research on the meaning-making processes underlying these beneficial effects from a qualitative perspective. The underlying processes by which writing promotes change and wellbeing remain unclear (Stone, Smyth, Kaell, & Hurewitz, 2000), and researchers do not agree on a single theory (Pennebaker, Facchin, & Margola, 2010) for how writing works in this way. This represents a “black hole” (King, 2001) for researchers to investigate. Therefore, in this article, we aim to clarify the meaning-making processes involved in expressive writing through a qualitative analysis. Recently, researchers have shown, by means of correlational studies, that writing benefits cognitive processing and emotional dysregulation (Baikie & Wilhelm, 2005; King, 2001; Pennebaker, Facchin, & Margola, 2010). This is measured by counting changes in the use of word categories (Pennebaker, Booth, & Francis, 2007), positive/negative emotions, and cognitive words, which reflect the beginning of the writer’s coherent story-making process, way of

expressing thoughts/emotions in words, and an attempt to identify the causes and meaning of the traumatic event (Holmes et al., 2007; Pennebaker et al., 2010). To broaden this investigation, we agree with Sundararajan, Kim, Reynolds, and Brewin (2010) on the necessity of switching from a textual analysis focused on “what they are saying” to one directed at the processes underlying writing. Emotional regulation can result from a change in the way events are processed, made sense of, and connected, without any such change being apparent in the content of the emotional information. An analysis based on counting words belonging to definite linguistic categories is limited by its disregard of the broader context in which the words are used, and so of the tone, meanings, and themes. These meanings and themes could be (part of) the explanation for why writing affects health outcomes differently in various people (Low, Stanton, & Danoff-Burg, 2006).

1

Federico II University, Naples, Italy

Corresponding Author: Maria Luisa Martino, Federico II University, via Porta di Massa n°1, 80133, Naples, Italy. Email: [email protected]

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Meaning Making, Trauma, and Health Offering a unitary definition of meaning making is a difficult task because of all the different conceptualizations and operationalizations that emphasize certain aspects according to different viewpoints (Park, 2010). It is still unclear whether the process of meaning making is a single, homogeneous construct, labeled differently each time, or a multifaceted one that consists of various independent constructs (Waters, Shallcross, & Fivush, 2013). Baumeister (1991) proposed a definition of meaning that can be reasonably accepted as a starting point: “mental representation of possible relationships among things, events, and relationships. Thus, meaning connects things” (p. 15). The process of meaning making is activated by traumatic life experiences that suddenly confront the person with a new information about the world—information that defies the person’s preexisting mental schemas and threatens one’s basic assumptions about the self and/or the world (Horowitz, 1986; Janoff-Bulman, 1992). To characterize the meaning-making process, we need to observe how people make sense of change and, in particular, their investment of effort and energy in bridging the gap between appraised meaning and global beliefs and goals (Joseph & Linley, 2005). They can either change their view of the traumatic event to adapt it to their current worldview, or they can change their worldview to integrate the traumatic event into global and situational meanings (Janoff-Bulman, 2004). People can make sense of an event in a number of ways to make it less threatening and more easily managed (Park & Blumberg, 2002; Waters et al., 2013). Researchers characterizing meaning making as a unitary construct have used different names for it according to their various purposes because they wish to emphasize its different aspects. Some have focused on the meaningmaking process as a search for meaning (Bonanno, Wortman, & Nesse, 2004; Davis, Wortman, Lehman, & Silver, 2000), an expression of a person’s need to find order in the world after a traumatic event by looking for meanings that make the event manageable, thereby rebuilding shattered assumptive worldviews (JanoffBulman, 1992, 2004). The worldviews shattered by the trauma are rebuilt by the discovery of meaning (Joseph & Linley, 2005). Other researchers have focused on the outcome of the meaning-making process after the trauma, highlighting different aspects. The meanings made (Park, 2010), that is, the whole series of possible changes that result from a person’s effort to reduce the gap between appraised (situational) meaning and global meaning, include a positive reappraisal of the traumatic experience, stressing the following: benefits to the self (Folkman & Moskowitz,

2000); benefit finding (Davis, Nolen-Hoeksema, & Larson, 1998), which is the search for positive aspects for oneself within the traumatic experience to offset the negative consequences and maintain high self-esteem; posttraumatic growth/personal growth, which is a series of positive changes after the trauma, including an increase in perceived meaning, personal strength, and an improvement in relationships (Tedeschi & Calhoun, 2004); and self-affirmation (Sherman & Cohen, 2006), that is, positive reflection on a valued self-domain. As we mentioned, other authors have defined meaning making as a multifaceted construct made up of multiple, interconnected aspects such as the aforementioned ones: sense making and benefit finding (Bonanno et al., 2004; Michael & Snyder, 2005); and making sense, benefit finding, and changed identity (Gillies & Neimeyer, 2006). In addition to the different conceptualizations of the meaning-making process, most scholars have suggested to focus on the meaning-making process both during medical care treatment (Stuckey & Tisdell, 2010) and at the end of it (Ching, Martinson, & Wong, 2012). The meaning-making process following a traumatic experience appears to be linked to health outcomes and symptoms reduction (Park, Edmondson, Fenster, & Blank, 2008; Tolstikova, Fleming, & Chartier, 2005). Specifically, researchers found that cognitive processing, to promote positive health effects, needs to be linked to the search for and discovery of meaning (Bower, Kemeny, Taylor, & Fahey, 2003). The positive health effects of meaning making include a protection against anxiety and a reduction of its effects (Davis et al., 2000). In sum, meaning making is an essential foundation of adaptation, integration of trauma, and development of well-being (Davis et al., 2000).

Narrative and Meaning-Making Processes: Our Perspective It seems essential that researchers focus on meaningmaking processes when dealing with narratives about a traumatic event, because suffering and distress are shattering experiences that trigger and are themselves active processes of meaning remaking after a negative event (Gillies & Neimeyer, 2006; Hall, 2011; Waters et al., 2013). Within a socioconstructivist perspective, we interpret the narrative, specifically the written narrative, as a space of meaning making about a traumatic experience (Angus, Levitt, & Hardtke, 1999; Angus & McLeod, 2004; Hermans, 2003; Neimeyer, 2002, 2004, 2006) through which the writer reconstructs a broken self-narrative after a traumatic experience. Narration acquires the role of a semiotic device whereby the traumatic experience is reactualized in the here and now of the narrative setting. Through plot

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Freda and Martino development in the narrative process, the writer sets up processes of semiotic connection that can promote change, because he or she strives to find a configuration for events in the discourse that can make sense of the experience, even if temporarily, and thus promote integration of the trauma (Freda, 2011; Greenberg & Paivio, 2003; Margherita, Martino, Recano, & Camera, 2014; Neimeyer, 2002, 2004, 2006). From the above literature, we interpret the meaningmaking process as the result of a subjective and intersubjective mental process that promotes, by different interdependent paths, the connection of different aspects of the shattered self-experience resulting from trauma, such as emotions and cognition, past and present, present and future, loss and gain, homeostasis and change, and continuity and discontinuity (Freda, 2011). Here, we do not discuss the meaning’s contents; rather, our aim is to investigate the narrative process of meaning making as the development of semiotic connection that supports processes of change aimed at the integration and transformation of the traumatic experience; this may or may not support specific health outcomes. Accordingly, the integration of trauma is considered to be meaning making in progress, a dynamic process with an open-ended final determined by its interaction with reality (Simon, Feiring, & McElroy, 2010). We reported in a previous article (Martino, Freda, & Camera, 2013) that writing affects health outcomes; in this article, we use a qualitative approach to explore the meaning-making processes underlying the writings of parents of children with acute lymphoblastic leukemia (ALL) in the off-therapy phase. Specifically, what are the processes of meaning making through which writing has worked? That is, what are the specific processes behind the different types of writing in relation to the parents’ psychological outcomes following the intervention? We highlight the specific meaning-making processes activated by writing, whereby writing promoted (or did not promote) well-being. We also address the use and function writing had for the parents.

Method Participants and Tools We showed that writing was effective for the parents of children with ALL in the off-therapy phase, a remission phase of malignant cells that occurs about 2 years after diagnosis (Martino, Freda, & Camera, 2013). We selected the Santobono-Pausilipon Hospital in Naples, the center for the treatment and care of children with neoplastic illness in Southern Italy. In this article, we focus on the corpus of narratives written by parents to explore the meaning-making processes underlying them. We

designed the intervention in consultation with the psychologists of the hospital’s psychological unit, and the hospital ethical committee approved the research. The writing intervention was also included in the psychological support services of the hospital. We collected 23 writings from 10 fathers (M = 40.6 years, SD = 5.68) and 13 mothers (M = 38.84 years, SD = 5.52). All participants in the sample were Italian. They were 10 couples (parents of the same child) and 3 mothers. Their children were four boys (M = 4.25 years, SD = 0.5) and nine girls (M = 6.77 years, SD = 3.34). All the participants gave their consent to participate. We conducted the intervention research in 2009–2010 and recruited all the parents of children with leukemia in the off-therapy phase. At the hospital, the number of new diagnoses of leukemia is about 30 to 40 cases per year. From a total of 15 parent couples, 7 parents (5 fathers, 2 mothers) declined to participate because they lacked the time or did not want to. We used a particular version of expressive writing called the Guided Written Disclosure Protocol (GWDP), which was better suited to our context and aims than the classical writing procedure proposed by Pennebaker (e.g., 2004). The GWDP (Duncan et al., 2007) consists of three writing sessions that are designed to promote a coherent global narrative developed across different time frames (i.e., present, past, and future) of traumatic events. In the first session, the participants described, in a chronological order, the traumatic events that occurred and evolved gradually. The GWDP helped the parents to look for the causal links among occurrences as they cognitively processed the traumatic events and contextualized them in time. In the second session, the parents described the emotions they had felt at the time of the events. The combination of verbal labeling and development of negative emotions allowed them to engage in cognitive restructuring of the event. This helped them improve their insights. Finally, we asked the parents to consider how they felt today compared with yesterday and the effects that the events had had on them, and to describe how they might cope with a difficult experience in the future. We held three writing sessions every 15 to 20 days in a designated room at the hospital. In each session, a psychologist met with the participants individually. We administered tests for psychological symptoms and dysfunctional mood states, the Symptoms Questionnaire (SQ; Fava & Kellner, 1982; Fava et al., 1983), and Profile of Mood States (McNair, Lorr, & Droppleman, 1971), respectively, on three occasions for baseline (at the beginning of the first writing session), postintervention (at the end of the third writing session), and follow-up (40–45 days after the postintervention; it was only a testing meeting). We focused on the results of the SQ anxiety scale (Fava & Kellner, 1982; Fava et al.,

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1983) obtained at follow-up. We chose the SQ (Fava & Kellner, 1982; Fava et al., 1983) as a sensitive and reliable tool for measuring the change of symptomatological aspects after a psychological intervention. We focused on anxiety because it is one of the main symptomatological aspects that emerged among the parents during the off-therapy phase (see Martino, Freda, & Camera, 2013). Moreover, the GWDP is effective at reducing anxiety, stress, and post-traumatic stress disorder (PTSD; Duncan et al., 2007; Gidron et al., 2002). The SQ (Fava & Kellner, 1982; Fava et al., 1983) is a selfreport questionnaire comprised of 92 true/false items designed to measure psychological symptoms along four scales: Anxiety, Depression, Somatic Symptoms, and Hostility. Each response corresponds to a score of either 0 or 1. Each symptom scale score might range from 0 to 23. A high final score reveals a high level of psychological distress in the individual, and a low score indicates a low level of suffering.

Table 1.  Anxiety Levels of Parents at Baseline (T1) and Follow-Up (T3) of Writing Intervention. Parents’ Psychological Outcome Good

Low

High

Organization of the Narrative Corpus To pursue our aim in a more targeted manner, we used a mixed method of analysis and organized the whole narrative corpus (the writings of 23 parents) into different groups according to the parents’ psychological outcomes on the SQ Anxiety scale (Fava & Kellner, 1982; Fava et al., 1983) at follow-up. The participants might have used writing differently (reflected in the long-term benefits, which were or were not obtained from it), using different meaning processes. First, we selected the scores that exceeded the baseline (N = 23). The author-defined cutoff value for the clinical alarm was four (Fava & Kellner, 1982; Fava et al., 1983). We excluded from our analysis the data of six parents who had both baseline and follow-up scores below the cutoff value. The six participants in this condition had not demonstrated changes in the testing evaluation or during the writing (they persisted in a condition of well-being or no clinical alarm). We made this choice because we were interested in understanding the narrative meaning-making processes as a semiotic connection that supports a transformation of traumatic experiences, one that writing has supported in participants who underwent a relevant clinical change, either positive or negative, as a result of the writing intervention. As showed in Table 1, 17 parents had scores above the cutoff value. They were divided into three groups: parents with a good psychological outcome (GPO), who showed a trend toward decreased distress, from a situation of moderate distress at baseline (12 participants with scores from −0 to −10 points); parents with a low psychological outcome (LPO), who showed a trend toward increased distress, from a situation of severe distress at

Constant below cutoffa

Anxiety T1

Anxiety T3

6 11 11 5 5 7 12 12 6 6 12 11 20 13 14 20 20 3 1 1 1 1 0

0 7 4 0 2 0 6 4 2 2 7 8 22 19 16 2 0 2 0 1 0 1 0

a

Not eligible criteria.

baseline (3 parents with scores from 0 to +10 points); and parents with a high psychological outcome (HPO), who showed a trend toward markedly decreased distress, from a situation of severe distress at baseline (2 parents with scores from −10 to −20 points).

Method of Data Analysis We used the analysis method developed by Auerbach and Silverstein (2003) because it allows for the development, based on written narrations, of a theoretical narrative about the meaning-making process triggered by the trauma that is the illness of one’s child. This method is particularly suited to exploring meaning and its processes after a traumatic event (Auerbach, Salick, & Fine, 2006; Salick & Auerbach, 2006). It enables researchers to develop a system of categories organizing the content of the raw text into themes derived from recurring concepts, according to theoretical constructs. Using this method, we examined each text, including both parts and the whole, performing a top-down and bottom-up analysis. We first identified the relevant narrative material, and then pointed out recurrent concepts. Using a process of progressive abstraction, we grouped

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Freda and Martino Table 2.  The Processes of Meaning Making: Theoretical Constructs and Themes Emerged in the Writings of Parents With Good Psychological Outcome. Putting Into Word the Shattering Experience Thought Emotions

Reordering the Events

Diagnosis as a lack of Turning points in sense the experience Pervasiveness of trauma

Connecting Emotions and Events Acting to fight

Reevaluating the Event The good side of the experience

An emotional viewpoint to rethink the experience

these interrelated, recurrent concepts and identified the themes that emerged. We considered the emergent theoretical constructs as meaning-making processes (e.g., specific functions of the narrative plot and functions of semiotic connections in which the themes were linked) that promoted well-being and contributed to the transformation of the traumatic experiences in the GPO group. The theoretical constructs represent a process/function of narrative meaning making derived from a descriptive/ empiric level of analysis, such as themes construction. Therefore, they are abstractions derived from data, and they enrich the literature in a coherent way. After we identified the theoretical constructs, we arranged them into a theoretical narrative by retelling the participants’ stories in terms of the theoretical constructs (and their underlying themes). For the analysis of texts, we performed a comparison with three independent judges. Because of the nonhomogeneous distribution of results, we decided to analyze only the writings from the GPO group (n = 12). Thereafter, we used the theoretical constructs identified for this group to explore the narratives of the LPO and HPO groups, which were considered outliers in the results distribution. Our aim was to explore and highlight the functions of the GPO group theoretical constructs, starting from the underlying themes, in the LPO and HPO groups. We analyzed the writings of the GPO group and found traces of the meaning-making process. In reading the texts, we considered the following research question: What meaning-making processes underlie the parents’ writings? In this analysis, our initial framework was the above-mentioned literature.

Findings We identified five theoretical constructs and a number of associated themes (see Table 2). The theoretical constructs are as follows: putting the shattering experience into words, reordering the events, connecting emotions and events, reevaluating the event, and reconstructing the time process. We classified the themes into two categories: thought and emotions.

Reconstructing a Time Process The future already given The future as compensation

Putting the Shattering Experience Into Words In the narrative analysis, the first construct we identified was putting the shattering experience into words. By linguistically encoding the shattering experience, the writer puts into words, in the here and now of the narration, the trauma that followed his or her child’s diagnosis. Narration allows one to examine the experience from afar and reexperience the original lack of sense and uncertainty pervading it, while giving it words and symbolic organization. This narrative process is the first step toward semiotic abstraction that provides a basis for all other meaning-making processes. When writers put the lack of sense and pervasiveness of their trauma into words, they are shaping their experience. This can be the starting point from which the narration stems, the real starting point being the discontinuity/break wrought by the traumatic experience. The narrative setting reactualizes the shattering experience and thus triggers the parent’s renewed request for meaning making. The diagnosis as a lack of sense.  This theme emerges from narrative passages where the parents described the moment of the diagnosis being communicated as an attack to their global meaning systems, which provide safety and predictability, and an opening to the inexplicable and the unknown. For example, the parents wrote, “It is not explicable. Something that cannot be put into words” and “It was like being in an endless whirlpool.” One parent wrote, Anger for inexplicable life events, it cannot be imagined. Why must this happen to a child? You cannot even think of the impact of this reality; in fact, it is really a world apart. Something words cannot explain, no adjective would fit. When something like this happens to a child, it is just ugly.

If the symbolic function of language (required to make sense of one’s experiences) failed at the onset of the illness, through writing, the parents can put into words the lack of sense they experienced. This triggers a renewed request to make sense of the experience from a more distant and abstract viewpoint.

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The pervasiveness of the trauma.  This theme refers to narrative passages where the parents described their thoughts and feelings as being overwhelmed by the trauma that was their child’s illness. Specifically, the parents relived their story through the process of abstraction and put into words their lack of feelings experienced after they learned of their child’s diagnosis. They established a connection with the emotional paralysis and emotional shattering while reestablishing a connection with the events. As one parent wrote, It cannot be explained . . . in the beginning, it often happened that I would not feel anything; I did not feel anything anymore. I was just going through the motions, unresponsive to anything and anybody.

Reordering the Events The second construct is reordering the events. Because the narratives started from the traumatic events and the parents’ renewed request for meaning, they appeared to serve an ordering function by providing a space and place for every event. Specifically, narration helped the parents to recover the connections between the events, develop a plot that linked the events in a diachronic sequence, and reclaim and reconcile with the past. Through narration, they developed threads of continuity in their stories. Turning points in the experience.  By recounting traumatic events in a narrative, the parents in our research recovered their memory of salient turning points. One parent wrote, “Then our married life changed. I stayed home with another son, and everything changed from one day to the next. She was fighting inside, and we were on the outside.” Other parents wrote as follows: I took leave from work for a while. I did not lose my job. They helped me at work. Bad things went on between me and my wife. It was a period of detachment. We were taking out our frustration on everybody, her a little more than me. After five or six months, I started to brace up, also thanks to the good doctors when things started to turn for the better . . . [My child’s] hospital stays lasted a week, ten days, the first ones almost a month. Then things started to get better and better. In the end, it went well.

Just like receiving the diagnosis was a watershed moment, medical recovery occupied a physical and constructive space in the parents’ memory, as a turning point that reopened to life.

Connecting Emotions and Events The third construct is connecting emotions and events. This refers to the parents’ process of labeling emotions

and realizing the important role these emotions played in certain events. It is actually a two-way process: The parents in our research constructed their narratives as a safe space to label the emotions they experienced at the time of the traumatic events and to feel emotions they had suppressed during the illness. The narration process was an opportunity for them to label their emotions and connect them to past traumatic events in light of the present. Thus, the intervention allowed the parents to meta-reflect on a new version of the events no more limited to the events that transpired, but also including how the parents felt during those specific moments of their story. Acting to fight.  The theme of acting to fight refers to the time of action, of fighting, as the only possible way that the parents were able to continue providing the necessary support for their child during his or her illness. I always kept her close. Without weeping or wailing to her face, I explained the medications were our warriors. Of course it was hard, though I never took the time to cry. For 15 days, I could not even bring myself to drink water. I lost 15 kilos in 15 days.

Looking for the most appropriate strategy to fight the illness took the form of denying pain and making it impossible to sense it; these impossibilities were finally realized in the process of narration. An emotional viewpoint to rethink the experience. This theme sums up narrative passages where the parents detailed their narrative meta-reflection about their own self within the experiences they went through. Thinking about the traumatic experience from a meta-reflexive viewpoint allowed them to label the emotions they felt (e.g., despair, anger, and pain), making, inside the narration, a connection with the events that characterized the course of the illness and drawing attention to their reciprocal influence. We went through a very, very ugly period. Sadness for sure, upset about the disease itself. I did not think the child could make it through the chemo. He was the youngest, and I could see him getting weaker. In the early days, I was always upset, always having dark thoughts. I could not bring myself to accept that my child had suddenly fallen sick . . . today I am not as angry.

By setting up a space where action was suspended (i.e., narration), the parents were able to meta-reflect on new links they had made between their emotions and the traumatic events in light of the present and to think about why they had experienced certain thoughts or feelings.

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Reevaluating the Event The fourth construct is reevaluating the event. This refers to the parents’ process of reevaluating the traumatic event. It promoted their post-traumatic growth and benefit-finding resources. Through narration, the parents drew links between the present and the past, and they reevaluated the traumatic events in light of the present. This narrative harmonization appeared to support their process of acceptance of the past negative experience as a means of integrating it into their life story. It facilitated their transforming the meaning of the events into a positive opportunity for strengthening their emotional experience. The parents engaged in a process of negotiation with the illness event, which allowed them to represent it in the narration in a more positive light. This helped them to rebuild their sense of safety for the future. The positive side of the experience.  In several narrations about the future, as a part of the third GWDP session, the parents described their child’s illness as a transformative event in their own lives. I do not have fear anymore, about anything. To anything that happens, now I say, worse things happened before. I changed my way of looking at life and relationships; I certainly give them a different weight. I have overcome; I accept it. I can say I am 80% able to look at the bright side of the whole story. It made me stronger. I learned to appreciate simpler things. I am more serene now.

The changes they described were about their everyday attitude and their relationship with the world. These reevaluations allowed them to link the present with the positive features of their past experiences, which the parents carried with them to face future experiences.

Reconstructing the Time Process The fifth construct is reconstructing the time process. By this, we refer to a process we did not identify in the literature in these terms, but that emerged prominently in many parents’ narrations. In reconstructing the time process, the parents sought to establish rapport with the passage of time, particularly with the future. They wanted to bridge the gap between continuity and discontinuity in life, between break and continuity (Brockmeier, 2000; Freda, 2011; Freda, De Luca Picione, & Martino, in press). This construct, examples of which are found in writing from the third GWDP session, refers to the parents’ attempt to establish a connection with the passage of time. It characterizes their transition from an initial blockage (after the diagnosis communication) to a dynamic state in which they recognized the possibilities of life in the future.

The future, already given.  In their narrations, the parents tended to write about the future, searching for links between the present and the past that might integrate their uncertainties about the future. The narrative construction of the future was subordinate to that of the past, and it opened only in the short term to the variability of future events. The parents described the future from one perspective, characterizing the passage of future time largely on the basis of their past experiences. The experience I lived through and keep living through, for the time being, still does not leave me in peace . . . there are always worries, not about everyday life as much in the present, as about the hope that you will not go back to hoping again, because there is not going to be any certainty, not even at thirty. We live the future by the day.

In the narrative, we only glimpsed the future as investment in a project or a time of possible choices; the parents did not envision it clearly or invest in it. The future as compensation.  The parents wrote about their fear and uncertainty about the future. Through narration, they constructed a shelter in hope and desire about a future time that would be better, so that they could recover their confidence in their own safety systems. This theme highlights that in their narratives, they constructed the future in opposition to the past. This was an attempt to restore their acceptance of different potential events in the future. Their narrative constructions represented their efforts to link the present with the future and to see themselves in future projects. One parent wrote the following, and two others expressed similar ideas. I hope the future will be rosy. Now I hope the future will bring us only good and better things. I’d like for her not to suffer anymore. I want a joyous future for her, after all she’s been through.

Reflections on the Comparison With the Other Writing Groups Parents With a LPO In this section, we explore the functions of the GPO group theoretical constructs, starting from the underlying themes, in the LPO and HPO groups. We found many differences and peculiarities in the meaning-making processes of the LPO parents. For instance, their constructs, putting the shattering experience into words and reordering the events, reactualized the trauma without abstracting the individual’s own story in the here and now. Their central theme was the body—that is, the medicalized body, the body as a violated entity. One parent wrote,

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Qualitative Health Research  The doctor announced to me in a very tense voice that I should admit myself to a hospital. Today is the day when I had my bone marrow aspiration.

Unlike the GPO parents, who strove to establish links between events, the LPO group found it difficult to integrate their physical trauma (the concrete level of body experience) into an abstract plane of experience. This outcome seems to be the consequence of an atomization of the experiences; the parent can cope with them only by keeping each one of them sufficiently apart from the other in his or her narrative: I’m happy, my son plays, laughs, jokes, is active as have not seen him for a while. This morning, he had his bone marrow aspiration and the APL are positive, if we are lucky this is one more milestone, might it be so always.

With regard to the parents connecting emotions and events, we observed that the narration was an opportunity for them to recall once again what they had experienced during the course of their child’s illness, leading up to a series of actions—actions fulfilled probably even in the very act of writing. For parents in the GPO group, narrating emotions was an opportunity to begin and label their emotions and connect them to the traumatic events through a meta-reflexive process; narration, in this case, did not fulfill its function of transformative connection. In the course of this illness, the strongest emotion I felt was the urge not to feel emotions . . . not feeling emotions is probably best in this sort of journey one goes through. The emotions and feelings I had during this time were always negative. In fact, I can almost say there were none.

Furthermore, with regard to parents reevaluating the event, unlike the writing in the GPO group, narration in the LPO did not support harmonization between the past and present. The story themes revolved around the parents’ desire to forget about the experience, to blot out everything they had gone through. The parents had trouble reevaluating their experience of watching their child’s illness, and they used narration to position themselves before the illness only as people who incurred a deep loss (of parts of themselves, relationships, and life). This is illustrated in one parent’s statement: I hope nevermore to remember a time of life-destroying fear and anxiety like the one I went through these latter years. We wish this for her, and for ourselves.

With regard to reconstructing the time process, in this case, the narration brought the illness to salience once again, and time could be characterized only after it. The parents repositioned the illness as an organizer for the

meaning of their present and future. The themes of life were still organized along the lines, times, and rhythms of the illness. The parents seemed unable to banish the ghost of the illness coming back or to begin a new lease on life. Their descriptions of the future were subordinate to the illness and its needs. I worry if she even sneezes or she has a foot ache. We are planning a week out at the beach because she still needs plenty of sun and fresh air . . . I would like to ask the doctor if there are limitations. Ever since her physicians told me she does not need to take any more drugs, my fear and anxiety redoubled.

In some respects, just like the GPO group, the LPO parents imaged their present and future as a time of continuity of the illness, unable to conceive of their own self-determination.

Parents With a HPO In the writings of the HPO parents, we observed many similarities with the GPO group. Here, we highlight only the main features that, in our view, underlie the meaningmaking processes that led this group to derive excellent benefits from writing. Putting the shattering experience into words and reordering the events are the relevant constructs. This process stems from the parents reactualizing their story in all its parts, from verbalizing the initial lack of sense to realizing the pervasive and overwhelming nature of the trauma, drawing the connections between their emotions and the events, reevaluating their experience in light of an abstracted point of view, and engaging in a reflexive process. Most relevant, however, is the construct of reconstructing the time process. The parents expressed that in the future, they intended to reestablish their self-determination in family life. This narrative framing of the experience allowed them to look ahead and integrate the uncertainties they faced. By reconfiguring their relationship with time in their narratives, they gave meaning to the contents of their experience as an engine of change and development (benefit finding and post-traumatic growth). They sought a new investment in the future and consciously accepted the passage of time. Their stance toward the future was active; they made plans to transition from discontinuity to continuity. I hope we will never forget what we went through. I wish for it to become a part of ourselves along with all other experiences, some of them more serious than others, that make us richer and stronger toward the future that awaits us . . . and that we are already living through, somewhat more vigilant, but ever since the therapy was over, we have set no limits to ourselves. There are none, and we will go ahead happy in life having overcome this one, too.

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Freda and Martino For these parents, narration was an opportunity to acknowledge the importance of using the resources and social supports available to them at the hospital. This function appeared to underlie a process of reevaluating the whole event starting from the very course of the illness: family, children, psychologists, medical staff, volunteers, and faith. The opening to intersubjectivity provides for the broadening of the viewpoints at play, allowing the parents to accept and think about the event on an abstract plane: As soon as I came in, there was a volunteer and a psychologist who welcomed me. I was feeling awful, and they were saying “Do not worry,” and were trying to encourage me. Courage is prayers, family. They helped me and calmed me down.

As a theme, accepting the social resources available might have primed the mothers to make optimal use of the writing opportunity as a social support. Not feeling lonely and seeking out spaces to feel and share their fragility and their sorrow could have driven the changes they experienced. Furthermore, it could have been a way for them to recognize, in the process, the impossibilities they were finally experiencing: That other mom XXX helped me, and others too. I had helped her before and even dreamed about her. Other mothers have been calling me, even now. She came to visit the 26th, and that day, I was running a temperature of X.

Conclusions, Limitations, and Future Implications In light of the course we described and the different meaning-making processes we observed in the three groups of parents, we would like to conclude by remarking that the parents made use of the writing opportunity according to the different qualities of their meaning-making processes that the writing activated. The HPO parents, despite their severe distress at baseline, appeared to benefit considerably from writing. Meaning-making processes, particularly those pertaining to connecting, abstracting, and promoting reflection on the whole experience, enhanced the parents’ well-being, after they had overcome/integrated their traumatic experience. Specifically, their use of narration was a means to bridge the gap between continuity and discontinuity in their lives; it facilitated their thinking about plans for the future while integrating uncertainty and sorrow (Freda et al., in press). Narration also worked as one further resource to be derived from the context, just like the ones the parents had used at the time of their child’s illness, that is, opportunities to put their fragility into

words, integrating and reconciling their therapeutic treatment since the beginning within their own life story (Emiliani, Bertocchi, Potì, & Palareti, 2011; JanoffBulman, 2004). The LPO parents showed severe distress at baseline, which only worsened after their writing. Narration did not lead them to transform their traumatic experiences; it did not function as a stimulus to build a new event framework. On the contrary, the only possible version of their experience was one steadfastly anchored to concrete facts. Their child’s illness was a current presence to them; therefore, there was no acceptance of the flow of time and no space for reconciling continuity and discontinuity in life. The LPO parents asked to continue receiving the support service of narrative writing even after the writing intervention, and their request was accepted by the psychological service of the hospital. We interpreted the writing intervention, not as a technique to apply, but as a support tool offered within the scope of the support services proposed by the psychological unit of the hospital. This standpoint has made it possible to accept the parents’ request for support after the intervention. In this way, the writing intervention became an activator of self-awareness and a psychological demand (Martino, Freda, & Camera, 2013). The narratives of the GPO parents, who started out with moderate distress and derived benefits from writing, showed that narration can be used as an opportunity, similar to in the narratives of the HPO parents—to build a workspace where one’s story is reexperienced with a new reflexive viewpoint chiefly grounded on the construction of connections. These connections, in the here and now of the writing, led to discovery and transformation, and their evolution played out in relation to the future in an open-ended process (Simon et al., 2010). The parents’ constructive use of narration enabled them to label the lack of sense in their traumatic experiences. They relived their stories from a more distant perspective, put their emotions into words, and recognized positive (Davis et al., 1998; King, 2001) and change-promoting aspects of the experience (Tedeschi & Calhoun, 2004). There were open-ended spaces (Simon et al., 2010) of meaning making, such as plans for the future and bridging the gap between continuity and discontinuity in life (Brockmeier, 2000; Freda, 2011; Freda et al., in press). In general, we believe that writing, to different degrees, worked as a holding space (in the sense of both a container and an instrument of containment) where the parents could reexperience their trauma in a purposeful way, to promote the processes of semiotic connection (Currier & Neimeyer, 2006; Freda, 2011; Greenberg & Paivio, 2003; Neimeyer, 2002). Reexperiencing the trauma through writing was a self-limited process, with a

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Qualitative Health Research 

beginning and an end; there were well-defined boundaries (e.g., the time frame of writing and the writing itself). Likewise, writing represented a space of listening and putting into words, and the parents built their own framework. We believe writing might have fulfilled the role of scaffolding (Freda, 2013; Wood, Bruner, & Ross, 1976). Through the writing process, the parents took a stance more or less distant from the traumatic event, within a relationship mediated by the written text, which, having a closed form and defined space, allowed them to view the trauma from secure boundaries. Therefore, who can benefit from this type of writing intervention? In our case, the writing intervention was not suitable for all parents, rather only for those who had started from moderate distress at baseline. Those who did not start from a severe distress at baseline might benefit from other kinds of support intervention. Hence, we need to develop a preliminary assessment that parents can take before the writing intervention. Future research should further investigate this aspect together with the subjective psychological aspects that makes it more probable for parents to benefit from the writing intervention (e.g., emotion regulation). In addition, the results of our research have clinical implications. Based on the qualitative analysis of the parents’ traumatic experience narratives, we believe it might be useful to create an evaluation for determining which phase of the processing of trauma an individual is experiencing. This would allow us to evaluate the kind of risk that the individual might face (Neimeyer, 2004, 2006). Furthermore, through the qualitative analysis, we can devise ways to support the meaning-making process in accordance with the individual’s phase. Our results provide a “map” of the specific semiotic connection functions that writing activates. Using this map, we can understand the resources that will be useful for the meaning-making process of a particular individual. We can then construct personalized and focused supports that stand in the zone of proximal development. We believe, for example, that for some people, the most important step is putting the shattering experience into words, whereas for others, it is reconstructing the time process. We are aware of the limitations of this article. First, we observed nonhomogeneity in the results distribution, which meant we could not run the same analysis for all the writing groups. In the future, we will perform a statistical correlation analysis to investigate the relationship between meaning-making processes and psychological outcomes experienced by the parents at follow-up. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

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Author Biographies Maria Francesca Freda, PhD, is an associate professor in the Department of Humanistic Studies at Federico II University, Naples, Italy. Maria Luisa Martino, PhD, is in the Department of Humanistic Studies at Federico II University, Naples, Italy.

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Health and writing: meaning-making processes in the narratives of parents of children with leukemia.

There is literary evidence stating that expressive writing affects health outcomes. Nevertheless, the processes underlying its benefits remain unclear...
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