Managing uncertainty: A grounded theory study of restoring normality in young and middle-aged patients with lymphoma

Abstract

Objectives

This study aimed to generate a theoretical framework based on empirical data to explain the behavioral patterns closely related to young and middle-aged patients with lymphoma throughout the disease.

Methods

This study followed the classic grounded theory methodology, involving procedures such as theoretical sampling, substantive coding, theoretical coding, constant comparison, and memo writing and sorting. Multiple data types were used based on the principle of “all is data,” including 34 participants providing interview data along with observation notes and 40 relevant secondary texts from the “Lymphoma House” network platform and the “Lymphoma House 086” public account. Two autobiographical books written by lymphoma patients were also selected as data resources. Data collection and analysis were conducted in an iterative process until theoretical saturation was reached. The COREQ checklist was followed to report this study.

Results

The main concern of middle-aged and young patients with lymphoma was identified as restoring normality, while managing uncertainty was the main behavioral pattern for restoring normality. Uncertainty consists of two interrelated types: inherent uncertainty of illness and perceived uncertainty of patients. Four strategies are used to manage uncertainty: reconstructing certainty, adaptive coping, defensive buffering, and compensatory changing. Managing uncertainty is influenced by disease characteristics and perceptions, social resources, and cultural concepts. The consequence of managing uncertainty is reaching a new normality.

Conclusions

Pervasive uncertainty significantly affects the daily lives of young and middle-aged patients with lymphoma. Consequently, strategies for managing disease-related uncertainty to sustain normality are commonly observed in this population. This theoretical framework for addressing uncertainty can serve as a foundation for understanding and developing tailored interventions to manage uncertainty. Future research should focus on managing uncertainty to help patients restore normality.

What is known?

• •Young and middle-aged cancer patients exhibit poorer performance in role, cognitive, and social functioning than older patients.
• •Patients with lymphoma typically confront a wide range of psychosocial issues, such as anxiety, fear of cancer recurrence, unemployment, and social withdrawal.

What is new?

• •This study generated a novel theoretical framework for managing uncertainty to explain the behavioral patterns closely related to young and middle-aged patients with lymphoma.
• •The main concern of young and middle-aged lymphoma patients is restoring normality; their main behavioral pattern is managing uncertainty.
• •The theoretical framework of managing uncertainty accounted for the impact of Chinese cultural concepts on the behavioral patterns of patients, thereby strengthening the cultural applicability of the theory.

1. Introduction

Lymphomas represent a heterogeneous group of hematological malignancies encompassing various types, marked by distinct etiologies, symptoms, treatment modalities, and prognoses [1,2]. Lymphoma is becoming more common, ranking among the ten most frequently diagnosed cancers worldwide [3]. There were 553,010 newly diagnosed cases of non-Hodgkin lymphoma (NHL) and 82,409 new cases of Hodgkin lymphoma (HL) in 2022 [3]. In China, 85,200 new lymphoma cases were reported [4]. With the advancement of new drugs and treatment approaches, the overall survival rate of patients with lymphoma has been remarkably enhanced [5,6]. However, the diagnosis and treatment of lymphoma still exert considerable distress on the physical and mental health of patients [7,8]. Investigations indicate that patients with lymphoma typically confront a wide range of psychological issues, including anxiety, fear of cancer recurrence, and psychological distress [[9], [10], [11]].

Young and middle-aged people represent a high-risk group for lymphoma. Globally, 64 % of lymphoma patients fall within the age range of 18–60 years. In China, this proportion reaches as high as 78 % [12]. Notably, young and middle-aged cancer patients appear to exhibit poorer performance in aspects of role, cognitive, and social functioning compared to older patients [13,14], which suggests that age should be considered when conducting relevant research. Young cancer patients are at a higher risk of experiencing emotional distress, mood and anxiety disorders, and suicidal ideation, in addition to utilizing mental health services and facing challenges in social relationships and employment opportunities [15]. In addition, young and middle-aged lymphoma patients face significant fear of cancer recurrence [16]. They encounter numerous barriers to resilience, confronted with issues including unemployment, social withdrawal, and alienation in family relationships [17].

Limited research has specifically addressed the psychosocial issues affecting the young and middle-aged population. Psychosocial intervention programs targeting lymphoma patients currently fail to consider age and cultural differences [18,19], which may pose age-related and cultural obstacles to disseminating and implementing these interventions [20]. The utilization of a web-based self-management intervention was low (3 %), which precluded the determination of its effect [19]. Patients with lymphoma cope with cancer in diverse ways influenced by their experiences and conditions, suggesting that coping strategies should be considered within the context of the cultural environment and social relationships [21]. Understanding the main concern of patients with lymphoma who are dealing with the disease and how this concern is addressed is vital for healthcare professionals to develop targeted care interventions.

Grounded theory is used to generate a theory related to the interested participants to explain their behavioral patterns. It explains how participants continue to address their main concern and emphasizes that the research problem comes from the participants, not the researcher [22]. Grounded theory is a general inductive method with no distinct discipline, theoretical perspective, or data type [23]. The philosophical stance adopted by the researcher did not influence the procedural application of the grounded theory methodology [23]. The classic grounded theory methodology provides a feasible approach to exploring specific research groups’ main concerns and behavioral patterns from an open perspective [24]. Therefore, this study considered the following research questions: What are the main concerns of young and middle-aged patients with lymphoma? How can young and middle-aged patients with lymphoma address their main concern?

2. Methods

2.1. Study design

This study followed the classic grounded theory methodology [22] to explore the behavioral patterns of young and middle-aged patients with lymphoma. This study was reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [25].

2.2. Participants and data sources

The study was conducted between February 2023 and February 2024. “All is data” is a data collection rule used in this study, whereby anything that appears in the substantive field studied by the researcher can be used as data to generate grounded theory [22]. The data included face-to-face interview transcripts and observation notes. Interviewees were recruited from the hematology ward of Fujian Medical University Union Hospital. Inclusion criteria for interviewees were: 1) aged 18 to less than 60 years old; 2) diagnosed with any lymphoma; 3) aware of their own disease diagnosis and willing to participate in this study voluntarily. Exclusion criteria for interviewees were: 1) unable to communicate with the researchers (e.g., having language barriers, hearing impairments, cognitive disorders, or extreme debility); 2) having coexisting malignant tumors. Secondary sources relevant to the emerging theory were selected [22], including logs from the “Lymphoma Home” online platform (https://www.house086.com/) and tweets from the WeChat public account “Lymphoma Home 086.” Two autobiographical books written by patients with lymphoma were also included as data resources: Living Towards Death: The Credits I Earned for Studying Death and At the Age of 30, I Disappeared for 518 Days.

2.3. Postponed literature review

Grounded theory demands a postponed literature review, namely, refraining from reading literature in the substantive domain under investigation at the outset of the research [26]. Researchers can only incorporate literature as a part of the data for comparison once the grounded theory is achieved [22]. In this study, in response to the literature review requirements at the thesis proposal stage, the researcher sorted the literature knowledge before the data analysis. However, the literature review at the early stage of this study was undirected, broad, and unfocused [22]. When the grounded theory is completed, a literature review would be conducted in the substantive field, with the literature incorporated into the research as part of the data for comparison [22].

2.4. Data collection

This study used theoretical sampling to guide data collection [24]. Initial decisions in theoretical sampling were based only on a general sociological perspective of disease coping in young and middle-aged patients with lymphoma [27]. After the core category emerged, the researcher began to sample under the guidance of the theory [24] (See Appendix A for an example of theoretical sampling.). Different types of data provide different perspectives to analysts [24]. The first author, a female doctoral candidate specializing in cancer nursing, collected and analyzed all data. Open-ended questions initiated conversations (e.g., “How are you feeling today?”). The interview mainly depended on the content of the conversation to proceed with follow-up questions. Thirty-four patients were interviewed. The mean interview duration was 36.8 min, and the interviews ranged from 25 to 72 min. Only the interviews of the first 20 patients were audio-recorded in this study. As the core category emerged, the researchers recognized the disadvantages of audio recording: inundation with irrelevant data that ignored the theoretical saturation of the categories and their attributes [22]. Next, data were further collected according to the needs of theory saturation [22]. Guided by the core category, the first researcher browsed the content of posts on the Lymphoma Home platform and the WeChat public account, searching for relevant textual data to refine generated categories and their properties. Forty textual materials retrieved from websites and selected content from the autobiographies of two lymphoma patients were included in the analysis.

2.5. Data analysis

Grounded theory is multivariate, which happens sequentially, subsequently, simultaneously, serendipitously, and scheduled, involving procedures (e.g., theoretical sampling, substantive coding, theoretical coding, constant comparison, memo writing, and sorting) [22]. The first author conducted the data analysis following the procedures of classic grounded theory [22]. The coding process was conducted using a manual coding approach on the printed paper documents.

2.5.1. Substantive coding

Substantive coding includes two stages (open and selective coding) [27]. During the open coding stage, the primary researcher constantly asked a set of questions about the data (e.g., “What is this data a study of?”, “What category does this incident indicate?” and “What is happening in the data?”) [27] (See Appendix B for an example of open coding.). By asking questions about data, several conceptual categories were formulated. Constant comparison of these categories yielded several highly abstract conceptual categories [27]. Open coding continued until the core category “managing uncertainty” emerged and entered selective coding [22]. Next, the analyst delimited coding only to those variables related to the core variable [27]. During the selective coding stage, the researcher encoded based on the core “managing uncertainty” category and searched associated conditions and consequences [27]. Subsequently, the first author conducted interviews by asking questions centering on the generated categories. Concurrently, the researcher compared the generated categories with relevant online text and content from two autobiographies to refine the categories (Appendix C is an example of selective coding.).

2.5.2. Theoretical coding

Theoretical codes conceptualize how substantive codes may relate to each other as hypotheses to be integrated into the theory, often co-occurring with substantive coding [27]. In this study, theoretical coding was achieved while writing and sorting memos. The researcher obtained hypotheses about the relationships between concepts and the conditions under which these relationships change by asking theoretical questions about substantive codes (e.g., “Is this a condition or a context?”; “Is this a matter of degree or two dimensions?”) [27]. During theoretical sorting and writing, relationships among the main categories aligned with the 6C’s coding paradigm, encompassing the causes, processes, consequences, conditions, and contexts surrounding the core category of “managing uncertainty” [27].

2.5.3. Constant comparison and memos

Constant comparison is intertwined with the entire process of research [22], which includes four types of comparisons: incident to incident, concept to more incidents, concept to concept, and outside comparisons [27]. First, the researcher compared incidents within the data to generate concepts [27]. Next, the generated concepts were compared with incidents in other data to achieve concept saturation [27]. Comparison of concepts can generate a more abstract concept [27]. When the data no longer generated new concepts, the researcher searched and compared the relevant existing literature to verify or refine the concepts [27] (Appendix D is an example of constant comparison.). Memos were written continuously to record ideas about codes and the relationships that emerged while coding [27] (Appendix E for excerpts from these memos).

2.6. Ethical considerations

This study was approved by the Biomedical Research Ethics Review Committee of Fujian Medical University (Approval number:2023/01). All participants provided written informed consent before the interviews. All the patients’ personal information obtained in this study was encrypted and stored on the investigator’s personal computer; only the investigator and supervisor had access. The secondary data used in this study are publicly available online. The researcher analyzed the textual content, and no private information was involved throughout the research process. There is no instance of illegal dissemination and utilization, nor is there any copyright issue involved.

2.7. Trustworthiness

Several strategies were employed to guarantee the rigor of the research implementation process. First, the primary researcher (the first author) acquired knowledge of the grounded theory methodology through reading original English works and critically perusing the literature; the primary researcher also participated in grounded theory seminars and maintained communication with specialized grounded theory scholars to enhance the comprehension of the grounded theory methodology. Second, the first author engaged in reading numerous irrelevant books to enhance theoretical sensitivity through monograph construction reading [22]. Third, the researcher was always aware of preconceptions through timely writing memos and self-reflection to avoid prematurely placing concepts within predetermined frameworks. Finally, the research process was under the supervision and guidance of the supervisor, and the generation of the final theoretical framework was reviewed and revised through repeated discussions.

3. Results

Thirty-four interview transcripts, forty secondary textual materials, and two autobiographies of lymphoma patients were included in the analysis (Appendices F, G, and H provide details of the included data.).

The constant comparison revealed that the main concern of middle-aged and young patients with lymphoma is restoring normality in the fluctuations of the disease. The behavioral pattern in which patients continuously address their main concern is managing uncertainty. Uncertainty consists of two interrelated types: inherent uncertainty of illness and perceived uncertainty of patients. Four strategies were used to manage uncertainty: reconstructing certainty, adaptive coping, defensive buffering, and compensatory changing. The consequences of managing uncertainty are reaching a new normality involving physical safety and comfort, inner peace, and returning to society. The final theoretical framework is presented in Fig. 1, and the major categories and their properties are provided in Appendix I.

Fig. 1.

Theoretical framework for managing uncertainty.

3.1. Types of uncertainty

3.1.1. Inherent uncertainty

Inherent uncertainty refers to a disease’s uncertain, complex, and variable characteristics that are unchangeable. Lymphoma is a complex pathological type, and treatment principles differ for each type. Disease complexity is attributed to multiple interrelated factors during their occurrence and prognosis. Ambiguity is attributed to a lack of clarity in disease-related information, creating difficulties in precisely defining the characteristics of the disease, possibly increasing the patients’ sense of loss of control and helplessness in coping with the disease. For instance, W22 believes that “No one can give a definitive answer to how long someone will ultimately live because some questions have no answers.” Additionally, disease-related events (e.g., survival rates) are often presented as probabilities. As P18 said, “Even if you tell me that my five-year survival rate is 80 % or even 90 %, which is already very high, I still can’t help but feel that I belong to the minority.”

3.1.2. Perceived uncertainty

Perceived uncertainty stems mainly from an insufficient understanding of the disease, possibly caused by a lack of information and cognitive bias, making it impossible to establish a cognitive framework for the disease. Failure to construct a cognitive framework based on previous schemas leads to uncertainty and an inability to control or predict the disease. Document W24 mentioned, “I became weakened and vulnerable since being diagnosed with lymphoma. I had to make many adjustments to my life, and life was completely different from what I had planned. Like fishing by the river, whether I could catch a fish was uncertain.” Patients also experience a profound sense of powerlessness when managing the occurrence and progression of disease-related events, underscoring their lack of control over the trajectory of their illness, emotional responses, and uncertainty of their future. An autobiographical book said, “From the moment of discovery to the final diagnosis, trapped in ignorance and uncertainty, I felt both fearful and helpless about my own body” (B1).

3.2. Strategies to manage uncertainty

3.2.1. Reconstructing certainty

Reconstructing certainty refers to confirming disease-related information to reduce uncertainty, including information seeking, disease attribution, and consistency consultation. Perceived uncertainty caused by the lack of disease information can be reduced by reconstructing the certainty strategy. Insufficient understanding or inconsistent perception of the disease motivates patients to seek relevant disease information through various methods to reduce the perceived uncertainty of the disease. As document W11 mentioned, “A strong urge to survive sparked my insatiable drive to soak up medical knowledge. Within a few days, I read hundreds of medical articles and gradually understood my treatment plan better as I accumulated increasing knowledge.” Seeking reasonable explanations for disease events is essential to reduce uncertainty, which can assist patients in accepting the occurrence of disease-related events. Addressing the viewpoints of other individuals and achieving consensus among all parties is also crucial for reconstructing certainty. As interview 18 reported, “At first, I intended to seek treatment in a larger city, but after consulting, I was told that the treatment plans are the same. These treatment plans are basically standardized nationwide.”

3.2.2. Adaptive coping

Adaptive coping refers to a patient actively adjusting to the disease and addressing the negative consequences of disease-related uncertainty. Self-adjustment is the main action that helps patients accept changes, including active acceptance or passive compromise. Document W17 indicated, “After experiencing a brief but intense period of confusion and denial, but fortunately, this psychological fluctuation did not last long and promptly entered a new stage of adaptation.” Focusing on the present is another action to adapt, meaning that patients concentrate on the problems they face at the moment rather than indulging in worries about the uncertainty of the future. As mentioned in document W26, “Whether you are nervous or not, the result will be what it is. It’s better to use your energy to understand what other options are available for you and what other choices you have.” Seeking assistance from external sources is also a way to cope with diseases. Additionally, some emotion-regulating actions, such as self-expression, defusing tension through humor, and diverting attention, could also assist patients in maintaining the stability of their psychological state. Moreover, faith for religion can divert patients’ psychological distress and alleviate fear of disease. As P3 reported in an interview, “I think about the stuff in the Bible and God’s words. I don’t think about dirty things. What’s the point of thinking about them? The more I think about them, the more harmful it is to my health.”

3.2.3. Defensive buffering

Defensive buffering is a category of actions aimed at self-protection and includes self-quarantining, information shielding, and self-disguising. Defensive buffering aims to prevent the invasion of negative influences related to uncertainty and constitutes a psychological defense mechanism employed by patients when encountering realistic or emotional challenges. Self-quarantining provides a relatively safe environment for normalizing patient roles. As P13 stated, “I don’t want to interact with the outside world, including my former colleagues or friends, because they will ask about my illness and make me feel like I am not normal. I hate that feeling, so I don’t want to talk to them.” Information shielding is a deliberate cognitive strategy employed by patients to selectively disregard or remain oblivious to information as a means of self-preservation. Avoiding negative disease-related information can prevent information overload or cognitive inconsistency. As P9 stated in an interview, “I don’t want to know too much. Knowing too much is of no use anyway. I feel that looking up information is useless. That just wastes my time worrying. Anyway, no matter how I search, I still need treatment.” Self-concealment refers to the tendency of patients to mask or disguise their true emotions, intentions, or identities to prevent detection by others, which is primarily motivated by the desire to avoid negative consequences associated with exposure.

3.2.4. Compensatory changing

Compensatory changing strategies entail cognitive and behavioral alterations of negative events and experiences from a positive perspective, aiming to achieve benign coexistence with uncertainty by converting it into hope and power. Compensatory changing strategies include strengthening hope, obtaining benefits, and transforming power. Hope and threats coexist with illness uncertainty during the process of coping with disease. Strengthening hope can enhance the patient’s confidence in their recovery. P26 indicated that “Life is full of hope. The longer you live, the more hope you have. With the rapid development of medicine, perhaps one day, there will be a miraculous drug that can cure the disease completely. Therefore, you should see the positive side of things and seize every opportunity.” Although disease experience brings patients painful physical and mental experiences, they also positively change their lives. As P4 said, “Health is of great importance. No matter what, health should always come first. I might not have thought about it so much before; after all, I haven’t experienced it.” Experiencing a disease may also become a driving force for patients to grow and transcend themselves. Patients can pursue self-actualization by taking actions such as creating positive experiences, challenging themselves, and engaging in altruistic behaviors.

3.3. Conditions of managing uncertainty

3.3.1. Disease characteristics

Heterogeneity in disease type, symptom manifestations, and therapeutic effects is critical in patients’ perception and management of the disease. In the case of indolent lymphoma, patients are more concerned about their long-term quality of life than current treatment. As P18 said, “I know my own type of lymphoma, and if I were 40 years old now, I wouldn’t worry about it at all because I know my condition. People say that this disease is expensive but not life-threatening. My type is indolent, which means a longer survival period.” The severity of disease symptoms not only augments patients’ physical distress but also increases their difficulty in the cognition of the disease, which heightens their perception of disease uncertainty. Negative feedback on the therapeutic effect can undermine patients’ confidence in their recovery and damage their sense of disease control. As P1 stated, “I thought this disease could be cured, and chemotherapy would do the trick. I never expected to relapse so soon. I never considered the possibility of a relapse. This relapse has hit me hard. I couldn’t accept it.”

3.3.2. Cognitive abilities

Patients’ cognitive abilities directly affect the formation and management of uncertainty. Patients’ cognitive processing of disease-related information is influenced not only by the complexity and clarity of the information provided but also by intrinsic factors (e.g., educational attainment, age, and personality characteristics). One illiterate patient stated, “I don’t understand. I really don’t understand. I know nothing about lymphoma because I’m uneducated and haven’t bothered to learn about it. Right now, I’ll just take it one step at a time” (P20). As the course of the disease progresses, patients’ understanding of the disease gradually becomes more profound and clearer. Personality characteristics also play a role in patients’ disease perception. Patients with positive personalities tend to have an optimistic attitude towards diseases, as stated by P11, “Life has to go on. It’s nothing serious. I think it’s okay. Maybe because of my job and personality, I don’t think it’s a big deal.”

3.3.3. Available social resources

Social resources serve as a driving force for patients to manage disease-related uncertainty, assisting them in clarifying the uncertainty in the disease trajectory. Available sources include family support, medical resources, social relationships, and informal support. Family members can provide direct information sources for patients, constituting the main impetus for patients to cope with diseases successfully. Family members are involved in patient treatment decisions and daily care. One interviewee stated, “Usually, my child is the one who talks to the doctor. He fills me in on everything—what I should eat, what I shouldn’t, and all the other details. He’s been studying about lymphoma every day to help me out.” (P23) The accessibility of medical care, level of trust between doctors and patients, and clarity of communication significantly influence the timeliness with which patients can acquire professional information and the duration of their concerns regarding uncertainty. Interviewee P11 stated, “I think union hospital is quite reputable here. Its hematology department is well-known throughout the country. Follow the doctor’s advice and cooperate with the treatment, and you’ll be fine.”

3.3.4. Cultural concepts

This study identified cultural concepts that influence patients’ assessments of disease uncertainty and coping, including cancer metaphors, fatalism, stigmatization of diseases, and other-centeredness. For instance, P1 perceived illness as a form of punishment for past misdeeds. “I’ve been thinking about why I got this disease and why it happened to me. I feel it’s a bit unfair. Then I’m not a bad person, and people say bad things happen to bad people. But I haven’t done anything bad, so why did this disease happen to me?” Fatalism attributes life and death to uncontrollable external environments or natural laws that can augment the perceived uncertainty of disease among patients. One interviewee mentioned, “We cannot predict the future or control our fate, but we can choose how to face it. Life and death are predetermined, and the only thing we can do is to live in the present.” (P29) Under the collectivist orientation, patients are inclined to associate the realization of their self-worth with others. “Living for others” is an embodiment of the other orientation. This notion can stimulate patients’ survival beliefs, leading to a positive assessment of disease uncertainty, but it may also reinforce patients’ attention to uncertainty due to fear of death.

3.4. Consequences of managing uncertainty

The consequence of managing uncertainty is to restore normality, which is also the goal of patients in managing uncertainty, recognized as a new status different from that before the diagnosis, involving three interrelated dimensions: physical safety and comfort, inner peace, and returning to society. As P9 mentioned, the illness enabled her to establish a new lifestyle. “After falling ill, my life changed, and so did I. I became gentler and stopped nitpicking. Previously, I was a driven individual with seemingly boundless energy. Now, I simply wish to enjoy life. This is also quite nice. Things that I didn’t have time or opportunity to do before can now be done.” The new normality model exhibits characteristics of diversity, consistency, and dynamism. As interview 18 reported, “I’m different from others. Every family is unique. For instance, some people have to go to work, take care of their children, deal with daily necessities, and cook for their kids even after their treatment is over. I don’t have any of that. I just immerse myself in my own world.” With the fluctuation of the disease, patients may enter a new round of managing uncertainty and establish a new normality.

4. Discussion

A novel theoretical framework for managing uncertainty was generated using classic grounded theory methodology [22]. This theoretical framework explains how young and middle-aged patients with lymphoma constantly address their main concerns by managing uncertainty.

Uncertainty persists throughout the entire course of the disease, profoundly disrupting the normal lives of young and middle-aged patients with lymphoma, which has been confirmed by other studies [10,28]. Uncertainty encompasses not only the unpredictability of the disease but also the patient’s perceived uncertainty due to insufficient cognition of the disease [29]. Reconstructing certainty was employed to assess and identify the types of uncertainty, primarily facilitated by information seeking and consultations. The evolving information needs of patients resulted in a persistent pattern of information-seeking behaviors within this population. Most existing illness uncertainty management interventions incorporate elements of information support [30]. Striking a balance between a lack and an overload of information is an important issue to be considered by healthcare professionals providing disease information. Adaptive coping, defensive buffering, and compensatory changing strategies can alleviate the negative impacts on patients’ lives. Research has revealed that disease-related uncertainty positively correlates with avoidant coping strategies [31]. Uncertainty exerts negative impacts on the physical and mental states of cancer patients, suggesting that it is promising to enhance the quality of life of patients by reducing uncertainty through adaptation, moderate avoidance, and proactive change.

Social resources should be fully emphasized as supplementary support in managing the consequences of illness uncertainty. Young and middle-aged patients with lymphoma were competent and prone to acquiring disease knowledge, professional support, and emotional support from online medical consultations and writing mood diaries. Online resources have broadened the channels and scope through which patients access social support [32]. Numerous digital health and telehealth interventions have been designed and implemented in cancer care, yielding favorable patient health management results [33]. However, there is insufficient evidence comparing traditional in-person interventions with remote alternatives. Cancer patients also encounter challenges such as misinformation, information overload, and the unethical marketing of health products [34], which might increase their uncertainty. Family members providing additional disease information can help reduce patients’ disease uncertainty. Inconsistent or conflicting information provided by family members can exacerbate patients’ disease uncertainty, thereby interfering with patients’ decision-making [35]. This study highlights the crucial role of family communication in mitigating psychological distress in patients. Interventions designed to enhance family communication in patients with cancer have shown positive feedback [[36], [37], [38]], indicating that favorable communication within the family might be conducive to alleviating uncertainty.

Cultural concepts are essential in the generation and management of disease uncertainty. The unclear etiology of lymphoma and the unpredictability of its treatment and prognosis cause the disease to be replete with rich metaphors, influencing patients’ disease cognition and meaning construction. Patients’ deeply entrenched beliefs associating death and suffering with cancer may intensify their fear of the disease, potentially affecting their psychological well-being and treatment adherence. Fatalistic beliefs hold that external forces determine disease and death, and no actions can alter the ultimate outcomes [39], possibly reducing patients’ sense of control over the disease and heightening their sense of disease uncertainty. Cancer fatalism may intensify patients’ psychological distress [40] and reduce their motivation to cope with the disease [41]. Patients tend to take defensive buffering strategies to alleviate the psychological stress associated with disease uncertainty temporarily. Stereotypical impressions from the general public urge patients to feel alienated and ridiculed, forcing them to adopt social avoidance, conceal their illness, and disguise their condition. Future research should investigate the underlying factors driving social stigmatization while considering specific cultural contexts and designing tailored educational interventions to alter societal stereotypes regarding cancer effectively. Notably, patients regard unfulfilled family responsibilities as one of their beliefs about survival within a collectivist culture. Healthcare providers can rationally leverage the belief of “living for families” to induce patients to take positive actions, such as reinforcing patients’ belief in survival by taking advantage of unfulfilled family responsibilities and developing family-centered intervention programs.

Disease uncertainty prompts patients to oscillate between hope and panic. To alleviate the negative impacts of disease uncertainty, patients engage in cognitive restructuring by reinforcing hope, identifying benefits, and harnessing power. Drawing on traditional Chinese wisdom such as “finding blessings in misfortune” and “converting grief into strength,” patients can achieve a cognitive and behavioral transformation of negative events and experiences, enabling them to reframe the meaning of disease and focus on its potential positive outcomes. Positive changes in the cancer population, such as posttraumatic growth [42] and resilience [17], have attracted significant research attention. Specific interventions have been designed from the perspective of positive psychology to improve the subjective well-being of patients with cancer and alleviate negative psychological outcomes [43,44]. Web-based or machine-based interventions have also promoted cancer patients’ positive psychological traits [45,46]. However, evidence of the mechanisms of positive psychology interventions is insufficient. This study suggested that challenging or public welfare activities can be organized to assist patients in reestablishing confidence and constructing the meaning of their lives.

5. Limitations

This study had several limitations. First, although the primary researcher deliberately cultivated theoretical sensitivity by means of monograph construction reading before and throughout the research process, theory generation is inevitably limited by the researcher’s theoretical sensitivity. Second, the theory should be regarded as an ever-developing entity rather than a perfected product [24]. Given the limitations imposed by the first author’s theoretical sensitivity and the scope of data, the theory formed in this study is an interpretive framework for a certain behavioral pattern in this substantive field at the current time. In the future, the theory can be revised and developed by expanding the scope of the data comparison group. We inevitably introduce our personal disciplinary perspectives, which have two aspects: the theory can enhance theoretical sensitivity but may also limit the primary researcher’s creativity. This study only analyzed qualitative textual data. Quantitative data can also be used to verify and compare the findings of grounded theory [24].

6. Conclusions

Pervasive illness uncertainty profoundly impacts the normal lives of young and middle-aged patients with lymphoma. Managing uncertainty related to the disease to maintain a normal state of life is a common behavioral pattern among this population. This theoretical framework for managing uncertainty explains the strategies, conditions, and consequences of addressing uncertainty in young and middle-aged patients with lymphoma under the threat of the disease, further providing a theoretical basis for understanding and developing tailored interventions to manage disease-related uncertainty.

CRediT authorship contribution statement

Chunfeng Wang: Methodology, Data curation, Writing - original draft. Yong Wu: Resources, Project administration, Writing - review & editing. Rong Hu: Methodology, Supervision, Writing - review & editing.

Data availability statement

The datasets generated during and/or analyzed during the current study are not publicly available due to the commitment to safeguarding patient privacy and refraining from unauthorized dissemination but are available from the corresponding author upon reasonable request.

Funding

This study was supported by the Postgraduate Supervision Fund within the School of Nursing at Fujian Medical University (No. 110013).

Declaration of competing interest

The authors declare there is no conflict of interest.

Appendices. Supplementary data

The following are the Supplementary data to this article: