Introduction
Cancer is not merely a physical illness but also a profound existential challenge. As the disease progresses, suffering extends beyond physical symptoms, affecting the person as a whole and involving emotional, social, spiritual, and existential dimensions. To capture this broader experience, Best et al. (Reference Best, Aldridge and Butow2015) describe cancer-related suffering as holistic suffering. In this study, holistic suffering is understood according to the conceptual analysis proposed by Best et al. (Reference Best, Aldridge and Butow2015), who define suffering in cancer as an all-encompassing, dynamic, individual, and multidimensional phenomenon, usually marked by an undesirable negative quality and characterized by alienation, helplessness, hopelessness, and meaninglessness, while also being difficult for patients to articulate. Although related to constructs such as total pain, existential suffering, spiritual distress, and psychosocial distress, holistic suffering refers to the integrated whole-person experience of suffering, encompassing multiple dimensions within a single lived experience (Best et al. Reference Best, Aldridge and Butow2015). For example, both holistic suffering (Best et al. Reference Best, Aldridge and Butow2015) and total pain (Clark Reference Clark1999) recognize that the experience of cancer patients goes beyond physical symptoms, encompassing emotional, social, and spiritual aspects. However, there is a fundamental difference: while total pain is a concept that integrates various dimensions – physical, psychological, social, and spiritual – within an approach that still takes physical pain as the central element for understanding the patient’s suffering (Clark Reference Clark1999), holistic suffering proposes a qualitative leap, understanding the experience of suffering as an integrated and indivisible experience, and not merely the sum of different dimensions. In other words, total pain describes a set of dimensions that coexist in the patient, while holistic suffering refers to the unified experience of suffering, which transcends the simple juxtaposition of its components.
However, despite unprecedented scientific advances in oncology, a growing body of evidence reveals a profound crisis in the human experience of cancer treatment (Rodin et al. Reference Rodin, Feldman and Trapani2025). Although major progress has been made in oncologic therapies and metrics related to improved overall survival, the systems designed to deliver care have increasingly proven insufficient to address the emotional, relational, and existential dimensions of cancer (Rodin et al. Reference Rodin, Feldman and Trapani2025). In healthcare systems and services that prioritize the physical manifestations of disease, patients often struggle to express their nonphysical suffering (Best et al. Reference Best, Aldridge and Butow2015; Rattner and Cait Reference Rattner and Cait2025). As a result, deep spiritual, social, and existential suffering frequently remains unrecognized and unsupported (Rodin et al. Reference Rodin, Feldman and Trapani2025). To prevent this scenario, it is essential to consider the person as a whole (Best et al. Reference Best, Aldridge and Butow2015), recognizing that suffering extends beyond the physical body. A deeper understanding of how suffering manifests across multiple dimensions beyond the purely biological sphere is crucial for healthcare teams to provide more person-centered and compassionate care.
Although qualitative studies have explored suffering in cancer (Iskandar et al. Reference Iskandar, Rochmawati and Wiechula2021; Ruan et al. Reference Ruan, Liu and Yang2024; Aceves et al. Reference Aceves, Rocha and Sevilla2025), these investigations often address specific dimensions of suffering separately. Information remains scarce on how holistic suffering is experienced as an integrated phenomenon, in which physical, emotional, social, spiritual, and existential dimensions interact. This gap is particularly relevant in countries such as Brazil, the largest and most unequal country in Latin America (Ribeiro and Carvalhaes Reference Ribeiro and Carvalhaes2024), where social inequalities and heterogeneous, limited access to palliative care services, despite the expansion of this model of care across the country (Ribeiro and Carvalhaes Reference Ribeiro and Carvalhaes2024; Tripodoro et al. Reference Tripodoro, López Fidalgo and Pons2025), may shape the experience of suffering. Furthermore, the country’s plural spiritual landscape and family relationships, shaped by collectivist cultural values (Torres and Dessen Reference Torres and Dessen2008) and often grounded more in emotional than biological ties (Santos et al. Reference Santos, Souza and De Carvalho2025), may influence how suffering is expressed, concealed, or transformed.
To better capture this multidimensional experience among Brazilian adults with cancer, this study explores how holistic suffering manifests and is experienced by adults with cancer through qualitative inquiry, supported by descriptive quantitative assessment. By examining the multidimensional nature of suffering, this research provides insights that may guide more humanized clinical practice and contribute to the development of strategies to support patients throughout their illness trajectory. This study is especially timely given the recent establishment of Brazil’s National Palliative Care Policy in 2024, which, although signaling important progress, has yet to translate into equitable access across the health system. Moreover, as a country of continental dimensions marked by significant regional disparities, Brazil presents diverse sociocultural contexts in which the experience of multidimensional suffering may vary substantially, underscoring the importance of investigating these experiences within the national setting.
Methods
Study design
This was a qualitatively driven study with embedded descriptive quantitative data. The methodological priority was the qualitative exploration of patients’ lived experiences of holistic suffering. The quantitative component, based on descriptive analysis of the Suffering Pictogram–Brazilian version (SP-BR), was used only as contextual support to characterize self-reported levels and dimensions of suffering and to inform interpretation of the qualitative findings. Thus, the study did not aim to statistically integrate or test associations between quantitative and qualitative data, nor did it follow an explanatory sequential mixed-methods design.
Given the methodological priority of the qualitative component, this study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. Reference Tong, Sainsbury and Craig2007).
Setting
Recruitment and data collection were conducted at a non-profit organization offering assistance, educational, and therapeutic programs for cancer patients in the south of Minas Gerais, Brazil. Its services are distributed across 3 units, including an assistance center where patients and their families receive support such as meals (breakfast, snacks, and lunch), food supplements, legal advice, and opportunities for socialization and relaxation. Notably, the Oncology Center of a general hospital is located adjacent to this assistance center.
Sample and eligibility criteria
The study included adults with cancer, regardless of type, treatment, or duration of diagnosis. The sample was non-probabilistic and convenience-based. Eligibility criteria included a performance status of ≤3 Eastern Cooperative Oncology Group (ECOG) Performance Status Scale (Oken et al. Reference Oken, Creech and Tormey1982) and preserved cognitive ability to respond. Patients presenting with delirium or confusion, as assessed by the care team and researcher observation, were excluded.
The quantitative sample size was originally defined according to the methodological requirements of the initial validation study of the SP-BR, which has been previously published (Garcia et al. Reference Garcia, Das C Paiva and Perlamagna2026). In the present manuscript, data from this quantitative component are secondarily analyzed with a distinct objective, focusing on the descriptive characterization of suffering scores across dimensions.
The qualitative sample was determined iteratively, prioritizing narrative depth and diversity of experiences over a fixed sample size (Braun and Clarke Reference Braun and Clarke2019). Data collection in the qualitative phase was concluded based on informational sufficiency, without relying on a predetermined sample size or claims of thematic saturation as information redundancy. In line with reflexive thematic analysis, the research team considered the dataset sufficient when interviews provided adequate depth and diversity of accounts to address the study aim and support meaningful interpretation of how holistic suffering was experienced by participants. So, data collection continued until a broad range of experiences related to suffering was captured.
Importantly, the quantitative and qualitative components followed distinct and independent sampling logics. The 222 SP-BR respondents reflect the sample size required by the prior instrument-validation study (Garcia et al. Reference Garcia, Das C Paiva and Perlamagna2026), from which these data were secondarily drawn, whereas the qualitative sample size was governed by the principle of information power (Malterud et al. Reference Malterud, Siersma and Guassora2016) and informational sufficiency, consistent with reflexive thematic analysis (Braun and Clarke Reference Braun and Clarke2019). Accordingly, the 20 interviews were not intended to constitute a statistically representative subset of the 222 respondents; the 2 datasets served different and complementary purposes – descriptive contextualization versus in-depth understanding.
Recruitment
Participant recruitment commenced in August 2022. Patients were approached in the reception and communal areas of the assistance center. The data collectors introduced themselves, explained the study’s objectives and data collection procedures, and assessed eligibility, including a brief cognitive screening based on a simple question about current news (Date et al., (Reference Daté2020)). Patients who met the eligibility criteria and provided informed consent proceeded to complete the instruments for the quantitative phase.
All participants who completed the SP-BR were invited to participate in the qualitative interview phase. Interviews were conducted with those who agreed and were available immediately after completing the quantitative assessment. Participation was therefore determined primarily by logistical constraints inherent to the study setting, particularly the need to catch public transportation back to participants’ home cities or to attend scheduled appointments at the adjacent oncology center, rather than by purposive selection on the part of the research team. The exact number of refusals was not systematically recorded, and no interview was discontinued after it had started. Recruitment continued until the research team judged that informational sufficiency had been achieved, and no further interviews were pursued.
Instruments
Participant characterization: The researcher-developed questionnaire collected data on age, sex, comorbidities (e.g., hypertension, diabetes), cancer type, metastasis, treatment duration, and treatment objective (curative or palliative).
Suffering Pictogram: Developed by Beng et al. (Reference Beng, Guan and Seang2014, Reference Beng, Ann and Guan2017) and validated for Brazilian culture by Garcia et al. (Reference Garcia, Das C Paiva and Perlamagna2026), the SP assesses suffering from an internal perspective, covering sensory, emotional, cognitive, and spiritual dimensions (Beng et al. Reference Beng, Ann and Guan2017). It includes 8 items: discomfort (sensory), worry, fear, anger, sadness (emotional), hopelessness, difficulty in acceptance (cognitive), and emptiness (spiritual), rated on a Likert scale (0–4). Higher total scores indicate greater suffering (Beng et al. Reference Beng, Wen and Yoong2025). A general suffering score is also investigated (“Please write your overall suffering score from 0–10 at the centre of the pictogram,” 0 = no suffering, 10 = worst possible suffering) (Beng et al. Reference Beng, Ann and Guan2017). The SP-BR demonstrated strong internal consistency (α = 0.80) (Garcia et al. Reference Garcia, Das C Paiva and Perlamagna2026). The SP-BR was chosen for this study as it assesses multiple descriptors of suffering, aligning with the study’s aim of evaluating holistic suffering, and was specifically designed for individuals with serious illnesses (Beng et al. Reference Beng, Ann and Guan2017).
Procedures
The interviews were conducted by female researchers (E.M.C.P., A.B.P., and T.C.R.) with backgrounds in health sciences. Prior to the study, the interviewers had no established clinical or personal relationship with the participants. All interviewers had previous experience in studies involving serious illness and patient-reported experiences. More specifically, all interviewers had prior academic and research exposure to palliative care, acquired through elective palliative care coursework, participation in field-specific courses and scientific events, and undergraduate research (scientific initiation) on palliative care (A.B.P. and T.C.R.); some had additionally conducted graduate research involving palliative care and people with serious illnesses (E.M.C.P.). Through this background, the interviewers already understood suffering as a multidimensional phenomenon – encompassing physical, emotional, social, spiritual, and existential dimensions – consistent with the conceptual framework adopted in this study (Best et al. Reference Best, Aldridge and Butow2015).
Data collectors (E.M.C.P., A.B.P., T.C.R.) received 4 hours of standardized training from 2 senior researchers on administering the SP-BR and conducting qualitative interviews, including ethical procedures. During training, interviewers were instructed to conduct interviews in a non-judgmental and participant-centered manner, minimizing leading questions and encouraging open narrative expression of participants’ experiences and perspectives. Data were collected from August 2022 to July 2023 in a private setting. After informed consent, participants completed a characterization questionnaire and the SP-BR, with responses recorded in Google Forms (≈20 minutes).
Semi-structured interviews were conducted immediately afterward. All SP-BR respondents were invited, and those who agreed were interviewed until sufficient depth and diversity of experiences were achieved, consistent with reflexive thematic analysis (Braun and Clarke Reference Braun and Clarke2019). Interviews, held in private rooms, were guided by 2 core questions about experiences with the illness and treatment, with probes as needed: “What feelings can you share about your experience with the illness?” and “What feelings can you share about your experience with the treatment?” Sessions were audio-recorded (smartphone), transcribed verbatim, and lasted about 20 minutes.
Interviews were conducted once only; no field notes were systematically recorded, and transcripts were not returned for participant review. Quantitative data served solely as contextual support for the qualitative analysis.
Data analysis
Descriptive SP-BR findings were used to provide contextual characterization of how suffering was distributed across domains within the broader sample from which interview participants were recruited. No statistical matching, hypothesis testing, or formal mixed-methods integration was performed. Quantitative data were analyzed using descriptive statistics to characterize the distribution and intensity of suffering across individual items of the SP-BR and the overall suffering score. Measures of central tendency (mean and median) and dispersion (standard deviation), along with 95% confidence intervals and score ranges (minimum–maximum), were calculated for each item and for the total score.
Qualitative data were analyzed using thematic analysis, following Braun and Clarke’s (Reference Braun and Clarke2006) 6-phase approach to identify and analyze patterns in the data. This flexible method was chosen for its suitability in exploring subjective experiences. Themes were further interpreted using Viktor Frankl’s existential framework (Frankl Reference Frankl1988, Reference Frankl2006, Reference Frankl2008), which emphasizes meaning-making as a key response to suffering, particularly in terminal illness (Breitbart et al. Reference Breitbart, Gibson and Poppito2004). Unlike alternative models such as total pain (Clark Reference Clark1999) or Lazarus and Folkman’s stress and coping theory (Lazarus and Folkman Reference Lazarus and Folkman1984), Frankl’s approach directly addresses existential suffering and the potential path through it (Best et al. Reference Best, Aldridge and Butow2015), a central theme in the findings. This integration provided insight into meaning-seeking, coping, and internal resources used by participants. Interviews were manually transcribed by researchers. Qualitative data were analyzed by researchers with professional backgrounds in health sciences and prior experience in studies involving serious illness and qualitative methodologies (S.M.C.L.F., E.M.C.P.). The coding and thematic development were conducted manually, without the use of qualitative data analysis software. Throughout the analytic process, the researchers engaged in iterative, reflexive discussions to compare interpretations, examine their own assumptions about suffering and serious illness, guard against premature or leading interpretations, resolve discrepancies, and reach consensus on codes and themes. Participant validation (member checking) was not performed, consistent with the interpretive assumptions of reflexive thematic analysis, in which meaning is understood as co-constructed and does not depend on participant confirmation (Slettebø Reference Slettebø2021; Braun and Clarke Reference Braun and Clarke2024).
Results
Quantitative analyses
The mean age of participants was 59.84 years (range: 22–90, SD = 12.7), and the mean duration of cancer treatment was approximately 42 months (range: 2–144, SD = 31.7). Additional characterization data are presented in Table 1. It is important to note that a total of 222 participants completed the SP-BR and were included in the descriptive analyses of suffering scores. Due to an operational issue at the beginning of data collection, sociodemographic and clinical characterization data were unavailable for 18 participants; therefore, Table 1 presents characterization data for 204 participants.
Sample characterization (n = 204)a
Table 1 Long description
Sample characteristics are reported as counts and percentages in the column labeled, n percent, for gender, type of cancer, presence of metastasis, and main treatment purpose. Gender includes female, 148 at 72.5 percent, and male, 56 at 27.5 percent. Type of cancer includes breast, 81 at 39.7 percent; prostate, 21 at 10.3 percent; gastrointestinal, 32 at 15.7 percent; head and neck, 13 at 6.4 percent; female reproductive system, 9 at 4.4 percent; and other, 48 at 23.5 percent. Presence of metastasis includes yes, 51 at 25 percent, and no, 119 at 58.3 percent. Main treatment purpose includes curative, 165 at 80.9 percent, and palliative, 39 at 19.1 percent.
a Characterization data were available for 204 of the 222 participants who completed the SP-BR. Due to an operational issue at the beginning of data collection, these data were not obtained for 18 participants; however, their SP-BR responses were included in the descriptive analyses.
Table 2 shows that participants reported moderate overall suffering (mean [M] = 4.44, standard deviation [SD] = 3.22). The mean total PS-BR score was 1.32 (SD = 0.79). The SP-BR items with the highest scores were Worry (M = 2.26, SD = 1.29) and Discomfort (M = 1.74, SD = 1.23), while Hopelessness (M = 0.53, SD = 0.97) and Anger (M = 0.69, SD = 1.07) had the lowest scores.
Score distribution of the Suffering Pictogram (SP-BR) (n = 222)
Table 2 Long description
Scores are summarized using mean, standard deviation, median, 95 percent confidence interval limits for the mean, and minimum and maximum values. Overall suffering score reported by participants has a mean of 4.44, standard deviation 3.22, median 5, 95 percent confidence interval from 4 to 4.86, and range from 0 to 10. SP-BR item means are: discomfort 1.74, worry 2.26, fear 1.48, anger 0.69, sadness 1.59, hopelessness 0.53, difficulty in acceptance 0.80, and emptiness 1.48. For these items, medians are 2 for discomfort, worry, fear, sadness, and emptiness, and 0 for anger, hopelessness, and difficulty in acceptance. Item 95 percent confidence interval limits for the mean are: discomfort 1.58 to 1.90, worry 2.09 to 2.44, fear 1.30 to 1.66, anger 0.55 to 0.84, sadness 1.42 to 1.75, hopelessness 0.41 to 0.69, difficulty in acceptance 0.65 to 0.95, and emptiness 1.30 to 1.65. Each SP-BR item ranges from 0 to 4. SP-BR total score has a mean of 1.32, standard deviation 0.79, median 1.25, 95 percent confidence interval from 1.22 to 1.43, and range from 0 to 3.62.
Qualitative analyses
A total of 20 participants (female = 18, male = 2) were interviewed. Thematic analysis identified 4 themes and 10 subthemes (Table 3). The themes reveal a dynamic process through which participants moved between disruption, concealment, support, and meaning-making. Diagnosis initially destabilized participants’ sense of self and future, while spirituality, family ties, and the desire to remain present for loved ones provided anchoring resources. At the same time, these resources could also coexist with emotional concealment, avoidance, and the pressure to appear strong.
Themes, subthemes, and representative quotations derived from the thematic analysis of qualitative data
Table 3 Long description
Columns are Theme, Representative quote, and Subthemes, with four numbered theme rows. Theme 1 is Disruption of the self and the search for meaning after diagnosis, with the quote, I lost my footing, and subthemes Questioning the meaning of life, Fear of losing autonomy, and Limitations and losses. Theme 2 is Anchoring suffering: faith, relationships, and the ambivalence of coping, with quotes, If God is allowing this. I will be healed, and,.the desert is not a place to dwell and so on, and subthemes Spirituality as a double-edged sword and Social and family support. Theme 3 is Concealed suffering and the fragile work of acceptance, with the quote, We pretend to be strong so the family doesnt suffer, and subthemes Duality of feelings, Avoidance of the disease, and Loneliness of suffering. Theme 4 is Meaning as responsibility: enduring suffering for oneself and others, with the quote, Im going to overcome this for her, and subthemes The fight for life and overcoming and Finding lifes purpose through others.
Theme 1 – Disruption of the self and the search for meaning after diagnosis
The cancer diagnosis disrupted participants’ sense of self, continuity, and future, triggering existential distress and prompting questions about life’s meaning, autonomy, and the losses imposed by illness.
• Questioning the meaning of life – Participants experienced emotional upheaval, struggling to comprehend their diagnosis and searching for meaning. “[…] When I discovered the cancer, my suffering … I lost my footing. […] You don’t know where to turn. I was turned upside down, at rock bottom” (A10).
• Fear of losing autonomy – Patients feared becoming dependent on others. “[…] I’m afraid of … being bedridden, you know. Of having to rely on others to do everything for me. (…) I’m really afraid of not being able to do the things I do today. So, that’s my fear—depending on others, you know” (A4).
• Limitations and losses – Cancer disrupted daily life, causing sadness and frustration. “[…] But my life has changed a lot, you know? […] I was really sad. Because I gave up so many things. Now I can’t do them anymore. I can’t work anymore. I was really sad. I’m still a bit upset. I don’t understand what happened” (A17).
Theme 2 – Anchoring suffering: Faith, relationships, and the ambivalence of coping
Spirituality and social support stood out as anchoring resources that helped participants endure suffering, reinterpret illness, and sustain hope, although these same resources could also coexist with emotional concealment and efforts to appear strong.
• Spirituality as a double-edged sword – Faith provided strength and meaning, fostering resilience and helping participants reinterpret suffering as purposeful and temporary. For many, surrendering their fate to God offered a sense of control and hope for healing. “[…] If God is allowing this to happen in my life, it’s because I’m going to overcome it […] I will still share my testimony and live many more years because I will be healed, and I have faith […]” (A18). In some narratives, spirituality also served as a framework for reframing adversity through acceptance and perseverance, resembling an attitudinal stance toward suffering. One participant described reaching “rock bottom” but interpreting illness as a transitional experience: “[…] I hit rock bottom. But as I said, Jesus rescued me. Thank God. […] For those going through this desert, remember that the desert is not a place to dwell; it’s a place to pass through. And we are here in this world, just passing through” (A10). Although spirituality predominantly functioned as a source of comfort, some accounts suggested that reliance on faith coexisted with unexpressed distress and social withdrawal, indicating a complex coping process rather than uniformly positive adaptation (see Theme 3).
• Social and family support – Conversations with loved ones helped patients process their emotions. “[…] I would always try to talk to someone, to share my fears and difficulties, to see if it eased the burden. That helped me a lot … Talking, sometimes with my neighbors, my mom, or my sisters” (A14).
Theme 3 – Concealed suffering and the fragile work of acceptance
Acceptance presented itself as a fragile and nonlinear process, shaped by emotional ambivalence, avoidance of illness-related thoughts, and the concealment of distress to protect others from further suffering.
• Duality of feelings – Initial distress evolved into acceptance over time, though some struggled with emotional and existential distress. “[…] At first, I didn’t grasp the seriousness of it, the magnitude of the problem. I didn’t see myself in that situation. It was very unclear at the beginning, very dark. I wasn’t very informed about the disease. It was very difficult. Then, when I started understanding the seriousness of the problem, it was really complicated for me. […] But over time, I began to accept the treatment, the medications, and the losses” (A14).
• Avoidance of the disease – Some minimized their condition to cope. “[…] But I try not to dwell on it, I try to think it doesn’t exist. […] I avoid talking much about it with people. […] I try not to share or discuss it too much” (A1).
• Loneliness of suffering – Many concealed their distress to protect others, leading to isolation. “[…] We had to be strong all the time and always alone, right? (…) I barely talk about it with them. But I stay by myself, I talk to myself. […] We pretend to be strong so the family doesn’t suffer more than we do … But no one is strong all the time. And I’m just trying” (A4).
Theme 4 – Meaning as responsibility: Enduring suffering for oneself and others
Participants described meaning as closely tied to responsibility toward loved ones, suggesting that the will to live was sustained not only by personal resilience but also by the desire to care for, protect, and leave strength for others.
• The fight for life and overcoming – Patients developed strategies to maintain resilience. “[…] Like I tell my children, as long as I can fight, I will fight. I won’t give up … I won’t surrender … Especially because I’m from Pernambuco, so I’m strong. Strong!” (A4).
• Finding life’s purpose through others – The desire to support loved ones motivated patients to endure. “[…] My first thought … I was worried because I had a very young daughter, only nine years old […] I said: ‘My God,’ I’m going to overcome this for her! Because she’s still young and needs me. And that’s what I did, I kept fighting. […] I also have to teach her that, if one day I’m no longer here, she needs to learn how to get through it, right?” (A14).
Taken together, the 4 themes suggest a dynamic existential trajectory. Participants moved back and forth between disruption, anchoring, concealment, and meaning-making, revisiting earlier experiences at different moments in their illness; spirituality and relational ties operated as cross-cutting resources that could both sustain and conceal distress (Figure 1).
Interpretive conceptual model of the existential trajectory of holistic suffering in patients with cancer. This model was inductively derived from the study’s qualitative data through reflexive thematic analysis and is presented as an interpretive. The 4 interrelated themes – disruption, anchoring, concealment, and meaning-making – are not to be read as fixed, sequential stages. Solid arrows denote movement between adjacent phases, whereas dashed arrows denote the recursive, nonlinear movement through which participants returned to earlier experiences. Spirituality and family ties operated as cross-cutting resources that were simultaneously protective and concealing, and suffering and healing coexisted throughout the trajectory.
Discussion
The themes identified in this study suggest that holistic suffering manifests as an integrated whole, without a clear division into isolated domains. Suffering reflects a dynamic interaction of internal experiences related to existential disruption, relational bonds, emotional concealment, spirituality, and the search for meaning. The descriptive SP-BR findings provided contextual support for this interpretation, showing moderate overall suffering, higher scores for worry and discomfort, and lower scores for hopelessness, anger, and difficulty in acceptance in the broader sample from which interview participants were recruited. These quantitative patterns may help situate the qualitative findings within a broader profile of suffering marked by worry, discomfort, and relatively less explicit despair or anger. We interpret participants’ narratives as revealing an experience of suffering that cannot be classified or described, in a simplistic and reductionist way, as merely physical, psychological, social, or spiritual. These dimensions appear to continuously and mutually overlap and shape one another. For example, spirituality functioned simultaneously as a source of resilience, existential meaning, and, at times, emotional concealment, while family relationships operated both as sources of support and as reasons to suppress suffering in order to protect loved ones. Similarly, acceptance presented itself as an ongoing negotiation between vulnerability, fear, hope, responsibility, and adaptation.
The narratives from Theme 1 describe existential distress, fear of losing autonomy, and physical limitations. These accounts suggest that the diagnosis was experienced as a rupture in participants’ sense of self, continuity, and future. The expression of “I lost my footing” after discovering cancer illustrates how illness can destabilize the fundamental conditions through which individuals experience life as meaningful, safe, and inhabitable (Gabl et al., Reference Gabl, Feichtner and Weixler2024). In this sense, existential suffering may emerge when the prerequisites for a good life are perceived as threatened or lost, confronting the person with the real or perceived destruction of fundamental conditions of existence (Svenaeus, Reference Svenaeus2014; Längle, Reference Längle2009; Gabl et al., 2024). From this perspective, suffering can be understood as a perceived separation from the foundations of existence, or even as a perceived loss of existence itself (Längle et al., Reference Längle2016). The fear of becoming bedridden, dependent, or unable to work further reflects how cancer threatens autonomy, identity, and one’s love for life (Längle, 2009; Gabl et al., 2024). Similar experiences were reported by Abu Sharour (Reference Abu Sharour2019), whose interpretative phenomenological study of Jordanian patients with colorectal cancer recurrence described shock, uncertainty, loss of autonomy, and isolation, alongside a turn to spiritual activities as coping – echoing the disruption and threatened autonomy observed here.
As highlighted in Theme 2, spirituality played a central role in participants’ coping, with faith described as a source of strength, resilience, and meaning. However, spirituality also appeared as a double-edged resource: in some narratives, faith coexisted with minimization or concealment of painful emotions, suggesting possible spiritual bypassing (Welwood Reference Welwood2000; Fox et al. Reference Fox, Cashwell and Picciotto2017). This interpretation is reinforced by Theme 3, in which participants described loneliness of suffering and efforts to hide emotional pain to protect loved ones. Similar findings among Brazilian caregivers suggest that framing care as duty, affection, divine purpose, learning, or responsibility may reduce the perceived burden despite profound life disruption (Vieira et al., Reference Vieira, Garcia, Brito, Lima, Nogueira, Rezende and Fava2021). This pattern resonates with recent qualitative evidence: in a mixed-methods study of colorectal cancer patient–caregiver dyads, Hu et al. (Reference Hu, Zhang and Wang2025) described a “mutual protection through concealment” dynamic, in which patients and relatives reciprocally hid their distress to shield one another – a culturally shaped process (Hu et al. Reference Hu, Zhang and Wang2025) closely paralleling the loneliness of suffering observed among our participants. From a Franklian perspective, narratives such as illness as a “desert” to be endured may reflect attitudinal values, through which individuals find meaning in the stance they adopt toward unavoidable suffering (Frankl Reference Frankl1988, Reference Frankl2008). Social relationships also helped mitigate suffering by offering opportunities for emotional expression and support. Family, friends, and professionals were important resources for navigating illness, and prior evidence links low social support to delays in cancer treatment and fear of recurrence (Kroenke et al. Reference Kroenke, Kwan and Gomez2024; Li et al. Reference Li, Fang and Xiong2024). In this sense, support networks may strengthen emotional resilience and counterbalance tendencies toward concealment.
Theme 4 emphasized the search for purpose and the will to live, particularly through the desire to protect and care for children. While this motivation is valid, Frankl’s framework suggests that meaning in situations of unavoidable suffering extends beyond coping or distraction. Many narratives interpreted as “fighting for loved ones” can be understood as expressions of deeper existential meaning. In Franklian terms, striving for children often reflects Creative Values or Relational Meaning (Frankl Reference Frankl1988, Reference Frankl2008); however, when illness cannot be controlled, meaning shifts toward Attitudinal Values – the stance individuals adopt toward suffering itself (Frankl Reference Frankl1988, Reference Frankl2008). Several participants’ accounts reveal elements of self-transcendence and responsibility that go beyond mere perseverance. For example, framing illness as a “desert” to be crossed reflects the reinterpretation of suffering as a temporary passage, transforming personal pain into a message for others. Similarly, preparing a child to cope with the possibility of loss illustrates the responsibility of example, whereby the manner of facing illness becomes a final life lesson. Even expressions of strength rooted in cultural identity may represent what Frankl (Reference Frankl1988, Reference Frankl2006, Reference Frankl2008) described as the defiant power of the human spirit – the refusal to be reduced to the disease. Thus, these narratives suggest that patients were not only coping but actively constructing meaning, demonstrating that the will to live can coexist with, and even arise from, profound suffering.
Suffering does not unfold independently from healing but as a complex, dynamic process in which distress and adaptation coexist. Individuals confront distress while simultaneously mobilizing personal, relational, and institutional resources that support adjustment, resilience, and meaning-making. Suffering and healing should be understood as intertwined processes, not opposing states, through which people navigate illness and reconstruct their sense of self and purpose.
Clinical implications
These findings extend current discussions in oncology and palliative care by suggesting that holistic suffering may be better understood not as the sum of separate domains of distress, but as a fluid and relational process through which individuals continuously reinterpret themselves, their bodies, their relationships, and their future in the context of serious illness. The holistic suffering in cancer cannot be adequately addressed through symptom-focused approaches alone (Rodin et al. Reference Rodin, Feldman and Trapani2025).
These findings also carry implications for how concealed suffering might be recognized in clinical practice. Although this qualitatively driven study was not designed to develop or test a method for detecting suffering, our results indicate that expressions of acceptance, faith, and strength should not be automatically interpreted as the absence of distress. Because participants frequently concealed their suffering to protect loved ones or reframed it through spiritual meaning, professionals should attend not only to overtly reported symptoms but also to what remains unspoken – exploring existential concerns, relational burdens, and the sociocultural meanings through which suffering is expressed or hidden, and creating relational conditions of trust and safety in which such experiences can surface. In this respect, structured instruments specifically designed to capture the broader, holistic dimensions of suffering in people with serious illness – such as the Suffering Pictogram, cross-culturally adapted and validated for Brazilian patients (Garcia et al. Reference Garcia, Das C Paiva and Perlamagna2026) – may complement sensitive clinical dialogue by helping to make less visible dimensions of suffering more explicit.
At the service level, these findings may be translated into palliative care through the routine, longitudinal assessment of holistic suffering, the integration of psychosocial and spiritual care within interdisciplinary teams, the inclusion of family members in communication and support, and the training of professionals to recognize and respond to concealed distress instead of relying solely on spontaneous disclosure.
Limitations
This study provides a comprehensive assessment of holistic suffering in patients with cancer. However, some limitations should be considered. The use of convenience sampling from a single non-profit support center may have limited the diversity of experiences represented in the sample and introduced selection bias, as patients who were severely ill, unable to travel, or socially isolated were likely underrepresented. The sample was predominantly composed of women with breast cancer, which may have influenced the nature of the narratives. Our findings may therefore be more transferable to similar populations and should not be generalized uncritically to other groups. Although the inclusion criterion of ECOG ≤ 3 ensured participation of clinically stable individuals able to complete the study procedures, it may have excluded bedridden patients or those requiring intensive care, meaning the findings primarily reflect the experiences of ambulatory or semi-independent individuals. Additionally, qualitative interviews were conducted immediately after the quantitative assessment, raising the possibility of priming effects, whereby responses to structured items may have influenced participants’ subsequent narratives. Finally, the cross-sectional design precludes assessment of changes in suffering over time. Future studies in home-based and hospital settings are needed to better capture the experiences of more clinically fragile populations.
Conclusion
This study concludes that holistic suffering in cancer is not merely the accumulation of symptoms, but a dynamic and integrated experience that unfolds as an existential trajectory, in which participants moved back and forth between disruption of the self, the anchoring of faith and relationships, the concealment of distress, and the search for meaning. As synthesized in the proposed interpretive model (Figure 1), these movements were nonlinear, with existential distress, fear of dependency, emotional concealment, and fragile acceptance coexisting with meaning-making, relational responsibility, and spiritual coping. Spirituality and social support, while often serving as anchors of resilience, also revealed an ambivalent role – at times enabling the suppression of distress to protect loved ones. Acceptance did not appear as a linear or stable endpoint, but as a continuous negotiation between vulnerability and hope. Clinicians should be attentive not only to patients’ physical symptoms but also to the subtle ways in which faith, family ties, and the will to live for others can both sustain and conceal deeper distress. Beyond describing this experience, the proposed model may offer a preliminary framework to guide the development and organization of interventions aimed at holistic suffering in cancer and palliative care.
Acknowledgments
The conceptual model presented in Figure 1 was intellectually developed by the authors based on the study's qualitative findings. A generative AI-assisted tool was used solely to produce the graphical rendering of this author-designed model (Claude Opus 4.8/Anthropic). No AI tool was used in data collection, analysis, or interpretation. The authors reviewed the final figure and take full responsibility for its content.
Funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Competing interests
The authors report no conflicts of interest.
Ethical approval
The study was approved by the Federal University of Alfenas Research Ethics Committee (CAAE: 59576122.5.0000.5142; No: 5.600.405; August 24, 2022). All participants received written information regarding the research, and each granted their informed written consent prior to participating in the study. There were no incentives offered for participation in the study.
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