Introduction
By using Plato's ideas, Aristoteles states that the man, in front of nature and events that are not understandable, is “thauma-tized” (θαῦμα, thauma, as wonder, astonishment, but also terror, speechless anguish) (Llewelyn, Reference Llewelyn and Benjamin1988), and therefore, he addresses philosophy.Footnote 1 Cancer, as a traumatic stressful event is indeed a powerful expression of nature, demonstrating the unpredictability of existence and provoking significant existential suffering (Kissane, Reference Kissane2012; Grassi et al., Reference Grassi, Costantini and Caruso2017a, Reference Grassi, Mezzich and Nanni2017b; Vehling and Kissane, Reference Vehling and Kissane2018). Cancer forces the subject to acquire a new view of his/her own world in order to gain knowledge and find the meaning of what he/she has to cope with. Therefore, exploring and revising one's own life and sense of identity, given the state of conflict, confusion caused by the illness (Goldie, Reference Goldie2012) is mandatory. In this, the need to search for and reframing the meaning of the experience of cancer and its consequences in life are important determinants of adjustment to illness (Lethborg et al., Reference Lethborg, Aranda and Kissane2008; Park, Reference Park2010). In this way, the sense of transmission of vital spiritual and wisdom to the loved ones, as a legacy, can be fulfilled (Breitbart, Reference Breitbart2016).
For these reasons, group existentially oriented psychological intervention centered on giving sense and finding meaning (e.g., meaning-centered psychotherapy, MCP) have developed in the last 20 years both in palliative care (Breitbart, Reference Breitbart2002; Breitbart et al., Reference Breitbart, Gibson and Poppito2004) and other phases of illness, including survivorship (van der Spek et al., Reference Van der Spek, Lichtenthal, Holmaat, Breitbart, Butow, Jacobsen, Tak Lam, Lazenby and Loscalzo2021).
Since cultural differences may exist regarding the meaning of cancer as an event that interrupts one's own existential journey, the adaptation of group meaning-centered interventions and MCP have been proposed, taking into account the culturally bound representation of existence and meaning (e.g., Leng et al., Reference Leng, Lui and Chen2018 in China; da Ponte et al., Reference da Ponte, Ouakinin and Santo2020 in Portugal). In Italy, only a few data are available in the area of the meaning of the disease and the way cancer patients interpret their experience of illness. In one study, search for meaning has been shown to be negatively correlated with the individual presence of meaning in life, that in turn had a direct effect on both psychological adjustment and eudemonic well-being (Scrignaro et al., Reference Scrignaro, Bianchi and Brunelli2015). Also, demoralization, lack of self-continuity, and poor representation of death have been associated with low meaning in life and poor dignity among Italian cancer patients (Grassi et al., Reference Grassi, Costantini and Caruso2017a, Reference Grassi, Mezzich and Nanni2017b; Bovero et al., Reference Bovero, Sedghi and Opezzo2018, Reference Bovero, Botto and Adriano2019; Testoni et al., Reference Testoni, Sansonetto and Ronconi2018). Apart from these studies, no Italian investigation, except two dignity therapy studies characterized by one-individual session (Iani et al., Reference Iani, De Vincenzo and Maruelli2020; Testoni et al., Reference Testoni, Baroni and Iacona2020), examined, within an existentially oriented intervention, the meaning of cancer and the meaning of the intervention itself.
As a part of a broader project aimed at applying and validating existential-reorientation therapeutic intervention for cancer patients according to a person-centered approach to recovery (Grassi et al., Reference Grassi, Costantini and Caruso2017a, Reference Grassi, Mezzich and Nanni2017b, Reference Grassi, Riba and Wise2019), the aims of this qualitative report are to describe the main themes that emerged (i) in terms of the meaning of the experience of cancer and (ii) the meaning of the experience of the group psychotherapy intervention.
Subject and methods
The data presented are extrapolated from the clinical activity available at the Psycho-Oncology and Psychiatry in Palliative Care program (PONPC), the University of Ferrara and the Integrated Department of Mental Health, Ferrara, Northern Italy.
Based on our experience in conducting supportive-expressive group psychotherapy for breast cancer patients (Grassi et al., Reference Grassi, Sabato and Rossi2010), we have developed a short reorientation existentially therapy (RET) (Grassi, unpublished manuscript; Grassi, Reference Grassi, Filastro and Biondi2021). RET is an 8 session 90-minute weekly intervention with six to eight patients per group, that has a background in cognitive analytic therapy (CAT; Ryle, Reference Ryle1990; Ryle and Kerr, Reference Ryle and Kerr2020), which has profound roots in Mikhail Bakhtin's dialogic self and meaning in interpersonally relationships (Pollard, Reference Pollard2011). CAT is a proven evidence-based psychological therapy for several kinds of problems both in individual and group format (Calvert and Kellett, Reference Calvert and Kellett2014; Hallam et al., Reference Hallam, Simmonds-Buckley and Kellett2021) and it has been also applied in oncology (Pitceathly et al., Reference Pitceathly, Tolosa, Kerr, Watson and Kissane2011). Written diagrammatic (map) sequential reformulation of significant interpersonal relationship, significant events in life and the reciprocal roles played by the person (reformulation, recognition, revision) were taken from CAT and transformed, in RET, as a “route existential map.” Also, the “goodbye letter” as a narrative way to summarize the meaning for participant of the experience of therapy was taken from CAT (Hamill et al., Reference Hamill, Ried and Reynolds2008) and modified for a meaning-centered framework. A series of reflective exercises, such as meaningful experiences in life, main roles played in life were also proposed as indicated in meaning-centered psychotherapy (Breitbart and Poppito, Reference Breitbart and Poppito2014), by using philosophical stimuli (mainly lectures from Marcus Aurelius Meditations and Seneca Letters to Lucilius and other essays). Reflection on enactments of individuals’ patterns and significant relationship both in the past and in the present specifically concentrated in the experience of cancer were, therefore, encouraged. These reflections were mapped out and shared with the other members of the group, with participants providing insight, feedback, and suggestions to each other. The patients were split in small subgroups and asked to think for a few minutes about what emerged from the proposed exercises, write it on a piece of paper and openly discuss their reflective thoughts with the other members of the small group. Then, a general discussion was taken place in the large group.
The groups were led by psychotherapists (LG, SS, RC, MGN) who had also received training in MCP in the past (Breitbart and Poppito, Reference Breitbart and Poppito2014) as well as in CAT. The role of the therapists, as in existential and meaning interventions (LeMay and Wilson, Reference LeMay and Wilson2008; Breitbart, Reference Breitbart2017), was to create group cohesion, helping participants both to share their concerns and emotions and to reflect on their own experiences and express their values and feelings within the group.
In line with the aims of the study, in this paper, we will focus on the results that emerged from two specific exercises: (i) the first “spiritual exercise” invited participants to express their own reflection on the meaning of their cancer experiences through the following questions: “As you reflect upon your experience of cancer, what does it mean to you? What is the meaning you attribute to your illness experience considering your history and your existence?” and (ii) the second “spiritual exercise,” proposed at the end of the psychotherapy journey, invited participants to write a letter of meaning (the goodbye letter), under the question “What would you like to be shared with your journey companion and what has been the meaning of this journey you will remember?” This could be read aloud and at the same time shared between the members of the group as well as with other significant persons (e.g., family members or loved ones, friends) as a testimony of what patients had learned in the group experience (legacy).
The sessions were audio-recorded and transcribed verbatim. The transcripts of the sessions related to the first exercise and the text of the letters written by the participants constituted the material for the qualitative analysis that was carried within the interpretative phenomenological analysis (IPA) framework (Larkin et al., Reference Larkin, Watts and Clifton2006; Smith, Reference Smith2011; Smith and Shinebourne, Reference Smith, Shinebourne, Cooper, Camic, Long, Panter, Rindskopf and Sher2012). Data were analyzed using a bottom-up analysis and involved the following steps: (i) reading and becoming familiar with the data; (ii) generation of themes; (iii) coding data; and (iv) drawing the units of meaning in order to furnish the accurate descriptions of personal accounts. The acquired texts were analyzed with NVivo V.11 software package (QSR International, 2015), in order to codify categories including similar and related contents (Bazeley and Jackson, Reference Bazeley and Jackson2013).
The intervention as a part of regular clinical activity performed at the PONPC service was approved by the regulations and ethics of the Committee for the Protection of Persons as adopted by the Local Health Trust (Azienda Sanitaria Locale di Ferrara, Ferrara, Italy) and the University of Ferrara, and conducted accordingly. Each patient provided a written informed consent.
Results
The population who participated in the intervention consisted of 29 women (52.1 ± 8.6 years) with breast cancer. About half had metastatic disease and the rest loco-regional or local disease. All of them were in charge of the University Hospital Oncology Outpatient Unit for regular ambulatory follow-up after chemo-radiotherapy, or current chemotherapy and hormone treatment. Most lived with their family (husbands or sons) and regularly worked as employees. Socio-demographic and clinical characteristics are presented in Table 1.
Table 1. Socio-demographic and clinical characteristics of the sample
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The meaning of the experience of cancer
A series of themes emerged when the patients reflected on the meaning of cancer with an analysis of some underlying content that gave the opportunity to discuss the power of the disease in changing the worldview of each person, but also in expressing the need to change the view of that meaning. The following four major themes, summarized in Table 2, were identified during this reflective exercise.
Table 2. Main themes in the meaning of the cancer experience exercise
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Theme 1: Sense of stigma and loneliness (the foreigner). Patients often feel themselves abandoned and stigmatized by the world around them, including the society, the doctors, and the family itself. This perception of stigmatization evokes feelings of annihilation, of emptiness, of Unheimlich with the perception of being “dead in life,” and of “being a foreigner in my own land.”
Theme 2: Guilt (unjust guilt and anticipatory guilt). Guilt has been often associated with cancer in different ways. By the qualitative analysis emerged two different meanings of guilt. The first subtheme refers to be “unjustly condemned for something not done,” with the patient feeling victim of a powerful force (i.e., cancer). A second subtheme, which we have called “anticipatory guilt,” refers to the guilt relative to one's own death, in terms of both “abandoning my loved ones” and “not showing courage and strength to the family in fighting with the disease.”
Theme 3: Reconsidering one's own life and nostalgia. On the one hand, the experience of illness forces the individual to face the theme of mortality. On the other hand, it may lead to reflect upon life experiences in which one contributes to “give life-in-life.” Nostalgia in this sense also emerged as something not necessarily related to suffering and distress, but as a powerful force to make the past a teaching experience for the present and to allow “to look with new eyes at the future.”
Theme 4: Rebirth (a new life, life after life). Themes concerning a “second birth” (or a second life) also came out in the different analysis of the themes of the patients. These themes were sometimes very explicit and sometimes masked, but they express the need to have a second opportunity and to restart with a new life and new priorities. It is possible that this is a way to express the wish of a real new life, but also a way to express the urge to modify the old life in a more authentic way, as if it were a new life, to be lived in a different way.
Letters of meaning: The meaning of group experience
The analysis of what emerged in the “goodbye letter” exercise, that is, the letters of meaning written by the patients, was also important in giving a sense to the process of therapy. Working and being together in a constant reciprocal dialogue were particularly important for participants. This was a way to recognize the sense of the “journey done together” and of “being with the other,” acknowledging the experience of mutuality and reciprocal support, in search for meaning and the possibility to give meaning to a significant experience in the present. Three themes emerged with a significant content in the letters of meaning, as presented in Table 3.
Table 3. Main themes in the meaning of the group therapy exercise
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Theme 1: Togetherness and gratitude. One of the most significant themes was the sense of being together in expressing and exposing oneself to other “companions,” where togetherness was meant as an antidote to loneliness (in words and movements) (Table 3). For these reasons, gratitude emerged toward those who, in the group, had the same experience and with whom the sense of connectedness was so evident and powerful. The meetings in this journey (of both the disease and the process of therapy) were represented through the acknowledgment of “the goodness of the moment in the present” but also in the recognition that that present would have survived in the future (I will bring you in myself).
Theme 2: Legacy. The experience of giving and receiving “gifts” from the group, with an increased sense of awareness about existential issues has been considered a form of legacy. It was something profoundly human (e.g., love, advice, wisdom) to be used in the present to contrast feelings of isolation and fear, but also to be given to others in the future, as teachable compasses reorienting during times of challenging conditions of existence.
Theme 3: Acceptance. Being accepted in the group, as an individual, and being part of an acceptable process for others was one of the key element helping to be more prone to accept (in a stoic adaptive, not in a fatalistically helpless way) the future. Being in an acceptance mood means in fact to move on, treasuring the experience of stressful events and life in general (the many “sizes” in life dimensions are different now.).
Discussion
In this paper, we presented qualitative data of the experience of Italian breast cancer patients participating in a reorientation existentially centered group therapy. Attention was focused on analyzing the personal narratives of the meaning of cancer and the way in which the disease has been perceived and reframed in patients’ life. Also, we explored the meaning of being part of a group where the sense of participation and the sense of togetherness have a special role in the process of therapy.
Regarding the first issue, our findings indicate the universality of the themes of existential challenges determined by cancer, such as fear of death, concerns about being a burden to others, a sense of loneliness, pointlessness, or hopelessness; grief, regret, embitterment about what has been missed in life; and loss of dignity (Langle, Reference Langle2008; Kissane, Reference Kissane2012). However, some interesting aspects emerged through the reflective sharing of the patients’ experience in our context. More specifically, the feeling to be a stranger (foreigner) in ones’ own land has been frequently reported by the patients with the sense of loneliness being one the most significant consequences of cancer, but also, and more profoundly, a dimension that erodes the global sense of communication (speaking a different language) with the others. Also, guilt has emerged as a subordinate theme in the groups. As indicated by Breitbart (Reference Breitbart2017), the concept of guilt and existential guilt, together with responsibility and will, are part of the dimension of ultimate freedom. In his conceptualization, existential guilt arises when one is distracted from or impeded from exerting one's will and responsibility in living up to one's unique potential, missing opportunities in life. In our groups, guilt was firstly related to a perception of being punished by something wrong done in the past, not in the sense of guilt as a symptom of depression or culturally related to the Christian teaching of guilt for sins of the past, but as an unjust condition. Some aspects that were expressed by some patients by comparing their patienthood as being prisoners of Nazi camps, implicate the idea to be unjustly persecuted by an enemy (it could be external or internal) for something for which there is, in fact, no guilt. A form that we have indicated “anticipatory guilt,” in line with the literature relative to the so-called anticipatory grief (Grassi, Reference Grassi2007; Coelho and Barbosa, Reference Coelho and Barbosa2017; Allard et al., Reference Allard, Genest and Legault2020), emerged as a sense of anticipated disappointment regarding the fear of not being able to fight the disease and, then, to die without being an example for one's own family. Since possible clinical implications of this form of guilt could be related to an increase in a sense of purposeless in life and demoralization, this theme could be part of the intervention aimed at helping patients to face their anticipatory grief condition (Patinadan et al., Reference Patinadan, Tan-Ho and Choo2020).
The wide theme of dignity also emerged in the form of the need to be respected, not to be left alone and treated like a stranger (the sick) in a world of others (the healthy). The multiple and intertwining aspects between meaning and dignity are part of the complexity of the human existence of being in the world. As one of the participants said that there are “several meaning of dignity, including the fact that my values are helpful in giving dignity to my meanings.” According to Breitbart (Reference Breitbart2018), dignity and meaning are possibly distinct constructs or concepts, where meaning is a cognitive and experiential construct related to beliefs and feelings, while dignity results to be more a social construct relating to the “value” of a person as perceived by him/herself or the world around the person. However, as Breitbart (Reference Breitbart2018) underlines, both are essential in the human existence and in the experience of suffering and to both the intervention should be directed to increase the sense of meaning and of dignity among patients facing the challenge of cancer. In fact, depending on the meaning that patients gave to dignity, both the objective and subjective sense of this dimension emerged (e.g., the dignity of my place in the world, the dignity of my sense of personal history and possibilities, the dignity of my interpersonal values and worthiness, the dignity of my emotions, and the dignity of my finitude) (Galvin and Todres, Reference Galvin and Todres2015). All these aspects were related to the need to find a new and more authentic way to be in the world, as a second chance to start with a new life and new priorities, which is not only part of the religious idea of a new life after life, but the challenge to modify the old life in the present and the future (Vos et al., Reference Vos, Craig and Cooper2015).
Related to the meaning of the experience of the therapy, being in the group emerged as both a sense of togetherness, but also as a sense of acknowledgment of the support coming from other participants, confirming the importance of perceived relatedness when coping with existential distress and of strengthening interpersonal relationships within psychosocial interventions (Philipp et al., Reference Philipp, Mehnert and Müller2020). The letters of meaning (goodbye letters) produced some peculiar themes, mirroring for certain aspects the themes of the patients’ meaning of cancer. Not being alone and the perception of the group as a safe place contrasting loneliness were a first superordinate theme repeatedly brought to the attention of the members of the group and shared between members. The sense of gratitude for the “gift” of being together also emerged as a significant theme, not only as an antidote to loneliness, but also as a way to be in a better connection with others and with something “larger than ourselves as individuals.” Gratitude is a complex subjective feeling which included wonder, thankfulness, and appreciation in one's life, but also the recognition that the sources of this goodness lie, at least partially, outside the self (Watkins, Reference Watkins2014). Gratitude has been repeatedly shown to provide benefits (in contrast with destructive resentment or malicious envy) (Xiang et al., Reference Xiang, Chao and Ye2018) on different parameters (e.g., subjective well-being, life satisfaction, inhibition of negative emotions, reduction of anxiety and depression) (Wood et al., Reference Wood, Froh and Geraghty2010; Taylor et al., Reference Taylor, Lyubomirsky and Stein2017). The relationship between togetherness (as a form of social support) and gratitude has only more recently confirmed (Casu et al., Reference Casu, Gentili and Gremigni2020) and seems to be qualitatively supported by this study, in which both components of gratitude (the individual internal and the external components) were shown.
Furthermore, the sense of nostalgia, as a gift to the group came out in several reports from patients. This seems in line with the positive effect of nostalgia in spite of its etymological sense (from the Greek νόστος, nostos, homecoming; άλγος, algos, pain, ache, or suffering, therefore longing for home or familiar surroundings; but also bittersweet yearning for the things of the past). A series of data, in fact, show that nostalgia is a broader existential resource that helps people navigate through their concerns and fears, attain and maintain the perception that their lives have been meaningful and that can be kept in the future (Routledge et al., Reference Routledge, Arndt and Wildschut2011; Sedikides and Wildschut, Reference Sedikides and Wildschut2016). In this, nostalgia is inductive of a sense of self-continuity and self-connectedness (Zhou et al., Reference Zhou, Sedikides and Wildschut2008; Cheung et al., Reference Cheung, Wildschut and Sedikides2013; Sedikides et al., Reference Sedikides, Wildschut and Cheung2016).
All the issues we have discussed indicate the importance of the group experience, where the sense of togetherness contrasts the insidious challenges of cancer experience (Burlingame et al., Reference Burlingame, McClendon and Yang2018; Kissane, Reference Kissane, Breitbart, Butow, Jacobsen, Tak Lam, Lazenby and Loscalzo2021). It is clear that the group has, in general, the power to favor, through many therapeutic factors (e.g., cohesiveness, altruism, universality, self-disclosure), the well-being of the single participating members (Bloch et al., Reference Bloch, Crouch and Reibstein1981; Schnur and Montgomery, Reference Schnur and Montgomery2010). In this sense, within the group, both existential distress and existential awareness were part of both the specific “spiritual” exercises, and the process of therapy in general, where reflection on the disease and the opportunity to meet in the group implicated both the need to identify existential distressing themes but also a sense of acceptance and growth (i.e., gratitude, rediscovering the sense of self and the sense of the other). This can have contrasting effects on distress, demoralization, and meaninglessness (Lee and Loiselle, Reference Lee and Loiselle2012). This was highlighted by the theme of acceptance, as nicely expressed by Seneca's statement brought by one patient, where accepting (in an active stoic way, rather than a passive fatalism) the turmoil of life is also the way to live fully and to grow as a person.
More research should focus on this area, as coming from the meaning and existentially oriented intervention in comparison with the acceptance-oriented intervention (e.g., acceptance and commitment therapy) in cancer care (Zhao et al., Reference Zhao, Lai and Zhang2020).
Limitations
The main limitation of the study is that we did not quantitively examine the impact of the intervention in terms of existential distress, spiritual well-being, dignity, quality of life as done in randomized trials of meaning-centered and existential therapies (Vos et al., Reference Vos, Craig and Cooper2015; Vos and Vitali, Reference Vos and Vitali2018; Saracino et al., Reference Saracino, Rosenfeld and Breitbart2019). We only analyzed the main and superordinate themes emerging from two meaning-centered reflective exercises. Also, the preliminary experience of a short model of intervention involving a small number of patients cannot be generalized, although some issues related to the cultural context are to be considered in their specificity when conducting psychotherapy intervention. Lastly, since meaning is a wide concept having to do with both the subjective “sense of meaning” (e.g., purpose, understanding, responsible action) and the fundamental assumptions people have about life (existential givens) (Lee et al., Reference Lee, Cohen and Edgar2004; Vos, Reference Vos2015), it would be necessary to explore these aspects in a more careful way. Also, since many different forms of meaning-centered psychotherapies were created (e.g., individual and group meaning-centered psychotherapy, Meaning and Purpose Therapy) (Lethborg et al., Reference Lethborg, Aranda and Kissane2008, Reference Lethborg, Schofield and Kissane2012, Reference Lethborg, Kissane and Schofield2019; Breitbart et al., Reference Breitbart, Poppito and Rosenfeld2012, Reference Breitbart, Pessin and Rosenfeld2018), it would be important to compare the different themes emerged in these therapies.
Conclusions
Giving space to the sense of the meaning of the disease within the new territory of the togetherness of the therapy with its own meaning emerged as significant components of an existentially oriented intervention (RET) looking at the several dimensions of the human being (physical, psychological, interpersonal, and spiritual as it is in a person-centered approach) (Grassi et al., Reference Grassi, Costantini and Caruso2017a, Reference Grassi, Mezzich and Nanni2017b; Mezzich and Salloum, Reference Mezzich, Salloum, Grassi, Riba and Wise2019). It is suggested that emotional suffering, including existential and spiritual pain, can be reduced if psychological and/or existential intervention takes the meaning of the patient's experience of cancer as a focus (Murata, Reference Murata2003; Lethborg et al., Reference Lethborg, Aranda and Kissane2008), and in this, we also considered the impact of cancer according to the meaning of personal experiences. As indicated by other authors (Kissane et al., Reference Kissane, Bloch and Miach1997), the process that focuses on discovering the meaning and on reflecting on the sense of the significance of the event of the disease (and its implications) is a corner-stone factor in psychotherapy. In the Italian experience, the expression of meaning came indirectly out in a different individual intervention (i.e., a modified version of Dignity Therapy, with the use of photographs) conducted in terminally ill cancer patients (Testoni et al., Reference Testoni, Baroni and Iacona2020). In that study, the continuity of self and myriad values in the context of family relationships; personal dignity as characterized by the values of personal success, hope, and wisdom; and hope and generativity. In our experience, the reflection of the patients on both the disease and the experience of the group, therefore on the trauma but also on the healing process through the group, have been important to reorient themselves in the complex emotional and existential challenges of loneliness, being strangers in the world, guilt, and death.
Acknowledgments
The authors are indebted to all patients for their thoughtful reflections on their own life and the experience of cancer. The University of Ferrara is acknowledged for supporting research activities through FAR funds.