Study design

This study adopted a qualitative descriptive phenomenological design and followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [10].

Participants

A cross-sectional study was conducted from July to November 2023 at a tertiary-level hospital in Changsha City, Hunan Province, China, to investigate the demoralization syndrome among patients with decompensated cirrhosis. The demoralization scale-mandarin version (DS-MV) (S1 File), which was translated into Mandarin by Hong Xiaoqi et al, was used for assessment, and those with DS-MV scores ≥30 were defined as clinically significant [11]. The inclusion criteria were: adults (≥18 years) with decompensated cirrhosis; no clinical diagnosis of hepatic encephalopathy (screened using the West Haven Hepatic Encephalopathy Grading Scale [WHGES], grade 0); DS-MV score ≥30; voluntary participation in audio-recorded interviews; and written informed consent. The exclusion criteria were: overt hepatic encephalopathy (screened using the WHGES, grade ≥II) or other severe cognitive impairment (assessed by the Mini-Mental State Examination [MMSE], score <24, or the Confusion Assessment Method [CAM], positive for delirium); comorbid severe psychiatric disorders (diagnosed according to DSM-5 criteria by a psychiatric specialist); impaired verbal communication; or medical instability or terminal illness. All screenings were conducted by the study’s attending physician within 24 hours prior to enrollment. In our previous quantitative study, a total of 444 patients with decompensated cirrhosis were included. For the qualitative interviews, 318 patients with a DS-MV score of 30 or above were screened as potential candidates. From this group, participants were selected using the purposeful sampling method to ensure maximum variation, minimize selection bias, and capture diverse perspectives. The final sample size was determined based on data saturation, defined as the point at which no new themes or concepts emerged across three consecutive interviews. Ultimately, 18 participants were included, comprising 6 females and 12 males, aged 27–60 years. Basic information about the interviewees is shown in Table 1. Prior to commencement, the study received ethical approval from the Biomedical Research Ethics Committee of Hunan Normal University, China (Approval No. 2023337). Informed consent forms were signed by all participants prior to their inclusion in the study.

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Table 1. Socio-demographic and clinical characteristics of the study participants.

https://doi.org/10.1371/journal.pone.0337182.t001

Instrument

Based on the findings of our previous quantitative study, a systematic literature review was conducted using the keywords “decompensated cirrhosis,” “qualitative study,” and “demoralization syndrome.” From this review, three core interview dimensions were identified: “disease-related stressors,” “coping strategies,” and “social support,” with the Transactional Model of Stress and Coping adopted as the overarching theoretical framework [12]. Guided by these dimensions and the framework, we initially designed five open-ended questions. The draft interview guide was reviewed by two qualitative research methodology experts and a chief physician in infectious diseases to assess its content validity, clinical relevance, and linguistic clarity. The researchers then conducted pilot interviews with two eligible patients, followed by preliminary analysis of the transcripts. Based on expert feedback and practical experience, the interview guide was revised to produce the final framework used for the formal study (S2 File).

Data collection

All interviews were conducted by the first author, a graduate student and female nurse with systematic training in psychological interviewing methods and techniques, extensive qualitative research experience, and strong proficiency in applying interview skills. Prior to the interviews, tranquil venues within the infectious disease department were carefully selected, and interview times were scheduled in consultation with the participants. During the interviews, access to the room was restricted to protect participants’ privacy. Immediately before the interview, a brief cognitive screen was conducted to ensure participants’ cognitive soundness, including a 60-second Animal Naming Test and orientation/attention checks, and observation for clinical signs of hepatic encephalopathy (e.g., asterixis or fluctuating attention). If cognitive impairment was detected at this point or during the interview, the session was discontinued and rescheduled after clinical stabilization. There was no prior contact between the researchers and the participants before the study. Prior to each interview, the purpose and procedures of the study were explained to each participant, and written informed consent was obtained. A semi-structured interview guide, designed for open-ended questioning, was employed to systematically gather data. Interviews were conducted in Chinese, as it is the participants’ native language. Interviews were conducted in real-time, typically spanning 20–30 minutes, and audio-recorded using an iFLYTEK Smart Recorder (model B1) for accuracy. In addition to audio-recorded verbal responses, the first author took field notes during each interview to document participants’ non-verbal behaviors and emotional expressions, such as crying, laughing, signs of anger, or anxiety. These field notes were used alongside the transcripts during data analysis to ensure a comprehensive understanding of participants’ experiences. During the interviews, the interviewer consistently adhered to the principles of neutrality, non-judgment, and non-criticism, avoiding any guidance or suggestion. At the same time, techniques such as attentive listening, clarification, probing, and repetition were employed, with flexible adjustments to the interview questions to ensure that participants could freely and fully express their views. Interviews concluded when saturation was reached, signifying no new insights emerged. Each interview was transcribed within 24 hours.

Data analysis

Qualitative data were analyzed using NVivo 12.0 software and interpreted following Colaizzi’s seven-step method [13]. To ensure anonymity, all identifiers were removed and replaced with unique codes (P1–P18) by the first author. The first author transcribed all interviews verbatim in Chinese by listening to the audio recordings, and the second author verified the transcripts for accuracy; any unclear or ambiguous segments were replayed multiple times and jointly reviewed, with uncertain passages annotated (e.g., “inaudible/unclear”) and resolved through discussion, taking the audio as authoritative. Both authors independently and repeatedly reviewed the transcripts to gain a deep understanding of the data and to identify significant statements related to the experience of demoralization syndrome. Meaningful data segments were extracted and assigned initial codes (e.g., “fear,” “despair,” “failure”), which were systematically compared, color-coded, and grouped into categories based on thematic similarities and differences. Through an iterative process, overarching themes were identified and comprehensively described. To ensure coding consistency, the first and second authors conducted independent analyses and compared their results, discussing any discrepancies with all researchers until consensus was reached.

Methodological rigor

We ensured trustworthiness by following established qualitative criteria of credibility, dependability, confirmability, and transferability [14]. All interviews were transcribed verbatim in Chinese by the first author and independently verified by the second; ambiguities were resolved through repeated playback and discussion. Dependability was maintained using NVivo 12.0 and Colaizzi’s seven-step method, with coding histories and decision logs preserved. Both authors coded independently and reconciled discrepancies through consensus. Confirmability was supported by an audit trail, analytic memos, and reflexive team discussions, with themes grounded in verbatim quotations. Transferability was addressed by providing detailed descriptions of the study setting, participant characteristics (P1–P18), and illustrative quotes, while de-identification ensured confidentiality. The completed COREQ checklist is provided in the Supporting Information (S3 File).

Sources of demoralization syndrome

Impact of demoralization syndrome

Coping strategies of demoralization syndrome

Mitigation of demoralization syndrome support needs

Diverse sources of demoralization syndrome in patients with decompensated cirrhosis

Our findings indicate that disease‑intrinsic factors (e.g., somatic symptoms, illness uncertainty) together with disease‑external factors (e.g., financial pressure, social stereotypes) constitute the two principal triggers of demoralization syndrome among patients with decompensated cirrhosis. Participants frequently reported frustration and despair stemming from recurrent complications and complex treatment regimens (“I feel like an invalid. I can’t do anything”). Many also described limited access to disease-related knowledge following a late-stage diagnosis. Confronted with uncertainty about disease progression, they struggled to understand the illness and cope effectively, which engendered loss of control, helplessness, and a gradual erosion of future confidence. This uncertainty, together with low self-efficacy, perpetuates a vicious cycle in which low mood undermines adherence, leading to symptom worsening and, ultimately, greater despair (“When I feel down, I skip my medications; when my symptoms get worse, I’m even less willing to stick with treatment”). Demographically, our sample reflected a younger age at onset, with most participants serving as their family’s primary earners. Reduced work capacity, together with high medical costs, increased psychological stress by imposing the dual burden of diminished earnings and greater financial obligations (“I can’t work as I used to, but the bills keep piling up”). Aligned with these findings, Handoyo et al. [15] reported that for men who measure self-worth by their role in “providing for the family,” illness can jeopardize their identity and bodily integrity. Participants in our study expressed analogous threats, articulated as guilt, shame, and anxiety, emotions they often considered more distressing than the physical symptoms of decompensated cirrhosis. In our interviews, some participants reported feeling judged when seeking medical care, particularly when their condition was attributed to alcohol abuse and high-risk sexual behaviors, making them more likely to experience pronounced societal stigmatization. This underscores societal stigmatization as a deep-seated trigger of demoralization syndrome and resonates with the qualitative findings of Toumi et al., which documented a pervasive ‘deserved illness’ stereotype among patients with liver disease regardless of etiology [16]. Our data ground this conclusion with concrete examples and further show how such stigmatization exacerbates self-loathing and fosters a pervasive sense of hopelessness. Taken together, these insights highlight the need for destigmatizing clinical communication, routine assessment of demoralization syndrome, and timely psychosocial referral in hepatology care.

Focusing on positive patient emotions to guide positive coping

Coping styles represent the cognitive and behavioral strategies individuals employ when confronting stress and frustration [17]. Our study delves into how patients with decompensated cirrhosis navigate these coping mechanisms, highlighting the presence of two distinct approaches: negative coping and positive coping. This finding is consistent with previous research conducted by Fang Fang et al. [18]. In the narratives of negative coping, patients often exhibit a tendency to succumb to the persistent distress caused by their illness. Our in-depth interviews further reveal that this coping mechanism is not only rooted in the reality of the uncontrollable nature of complications and the pressures of poor prognosis but also deeply ingrained in patients’ feelings of helplessness regarding their disease progression. Many participants disclosed psychological motivations behind “giving up” or “avoiding discussions about their condition.” One participant candidly expressed, “Overthinking only leads to disappointment, so it’s better not to think about it.” This perspective not only reflects an emotional avoidance on the individual level but also reveals the subjective uncertainty they experience when facing their illness. This uncertainty often triggers fear and anxiety, prompting patients to conceal their health issues, thereby falling into a vicious cycle of psychological withdrawal. When patients choose not to disclose their health issues, they are unable to access crucial support, leading to increased feelings of helplessness and isolation that ultimately diminish their confidence and willingness to confront the illness. Additionally, social stigma significantly affects patients’ coping strategies. Some participants clearly stated that, fearing the label of “liver disease,” they choose to hide their conditions, refuse social support, and even avoid follow-up visits. Conversely, positive coping is characterized by patients’ proactive acceptance and reconstruction of their illness experience, typically manifested through the recognition of post-traumatic growth, resilience in facing their realities, and a gradual exploration and reconstruction of the meaning of life through ongoing reflection on their illness. This study found that patients with chronic liver disease who employed such coping strategies generally exhibited higher levels of life satisfaction and emotional well-being, a finding that aligns with the results of Stewart et al. [19], further supporting the important role of positive coping in reducing feelings of hopelessness and promoting the development of psychological adaptation among patients. In light of these findings, it is imperative for clinical nurses to integrate a holistic understanding of the psychological landscape of patients with decompensated cirrhosis into their caregiving approach. By emphasizing positive psychology interventions, nurses can empower patients to embrace self-acceptance, share moments of joy, and cultivate optimistic outlooks. These interventions serve to augment patients’ psychological elasticity, fortify their resilience against stressors, and foster a proactive stance towards managing their condition. Ultimately, such initiatives aim to mitigate the onset of demoralization syndrome among this patient population.

Providing avenues for emotional catharsis and facilitating patient role change

Studies have shown that patients with decompensated cirrhosis often seek emotional catharsis primarily from their spouses, parents and friends [20]. In-depth interviews conducted for this study further revealed that most patients with decompensated cirrhosis have substantial emotional expression needs and a desire for support. Particularly when facing significant psychological stress, patients strongly hope that their family members can provide not only emotional acceptance and companionship but also substantial professional assistance in medical decision-making and daily management. However, many participants noted that due to a lack of safe, empathetic, and effective communication channels, they often feel compelled to conceal their true emotions and psychological struggles. Effective emotional catharsis plays a pivotal role in bolstering patients’ psychological resilience and self-regulatory capabilities, enabling them to navigate the adversities accompanying their condition and fostering a more positive outlook [21]. Recognizing the pivotal role of family members in detecting psychological shifts in patients [20], nursing staff should help family members understand the helplessness and hopelessness of the patient. This entails guiding them in responding empathetically to the patient’s emotional outbursts, fostering open communication channels, and striking a delicate balance between concern and overbearing attention. Importantly, healthcare providers should be enlisted whenever necessary to provide specialized assistance. In addition, it was also found that patients with decompensated cirrhosis lacked skills in emotional communication and tended to choose the coping strategy of concealment, which would weaken the patients’ self-regulation ability, reduce their sense of well-being and social belonging, and might even cause them to miss the optimal time to receive psychological interventions [17]. Therefore, healthcare professionals are encouraged to facilitate role changes among patients, steering them away from passive concealment towards active engagement with their emotions. Innovative approaches such as board games and problem-based teaching methods can serve as effective conduits for patients to unburden themselves emotionally and rediscover the purpose and meaning in their lives through interactions with trusted individuals and professionals.

Improving the social support system to meet the multidimensional needs of patients with decompensated cirrhosis

This study identified the multifaceted needs of patients with decompensated cirrhosis in coping with demoralization syndrome. Prolonged illness and financial strain often precipitate psychological shifts and negative emotions – which profoundly impact patients’ physical and mental well-being, as well as their adherence to healthy behaviors [22]. Following the onset of the disease, patients with decompensated cirrhosis experience a shift in their role from caregiver to cared-for, with a significant drop in their total household income and rising medical expenses. This exacerbates their family’s financial burden, necessitating increased social support to mitigate the stress of illness. Therefore, patients should assess their family’s financial status and collaborate with healthcare professionals to devise cost-effective diagnosis and treatment plans, minimizing unnecessary medical expenditures. Timely application for governmental subsidies and participation in charitable initiatives such as Water Drop Fundraising can provide crucial financial aid from governmental agencies, organizations and compassionate individuals. This interview revealed patients’ concerns regarding the lack of accessible professional guidance beyond hospital settings. Disparities in regional development and limited healthcare access in remote areas, particularly rural regions, pose significant barriers to fulfilling recommended medical practices despite patients’ awareness of the importance of disease screening [23]. Therefore, government departments should speed up and optimize the establishment of a hierarchical diagnosis and treatment system to alleviate the imbalance of medical resources and improve the efficiency of their utilization. Medical institutions should prioritize the formation of comprehensive nursing team and service frameworks to deliver ongoing post-discharge care and address patients’ knowledge gaps, facilitating their recovery and condition stabilization. Furthermore, psychosocial support emerged as a critical factor in patients’ adaptation to the illness. Under the prolonged stress of living with the disease, participants relied on networks of healthcare providers and family members, which not only alleviated despair and helplessness but also helped them rediscover the value of life, reorganize daily routines, and gradually reintegrate into society [24]. As one participant vividly described: “I wanted to give up several times, but all those cousins gave me money and called to tell me to stick with the treatment.” Peer support likewise played an important role, motivating patients to face their illness actively and improving both treatment willingness and adherence [25]. Therefore, by increasing the level of understanding of the disease among family members, they can provide more consistent and stable support and companionship based on a thorough understanding of the disease’s characteristics and the patient’s needs, thereby creating a sense of safety and psychological belonging for the patient. At the same time, patients can access peer support through the psychological support platforms established by the hospital, enhancing their self-management abilities and building supportive relationships through the sharing of experiences and emotional interactions, which in turn boosts their confidence and adaptability in facing the disease.