
==== Front
Asia Pac J Oncol Nurs
Asia Pac J Oncol Nurs
Asia-Pacific Journal of Oncology Nursing
2347-5625
2349-6673
Elsevier

S2347-5625(24)00185-9
10.1016/j.apjon.2024.100563
100563
Original Article
Symptom experiences and self-management strategies of patients with haematological malignancy undergoing chemotherapy: A qualitative study
Yang Hui ab
Wu Bizhao b
Hu Rong ronghu1246@fjmu.edu.cn
a⁎
Wang Ying yingw0506@126.com
a⁎
a The School of Nursing, Fujian Medical University, Fuzhou, China
b Department of Hematology, Ningde Municipal Hospital Affilliated to Ningde Normal University, Ningde, China
⁎ Corresponding author. ronghu1246@fjmu.edu.cnyingw0506@126.com
30 7 2024
9 2024
30 7 2024
11 9 10056320 4 2024
22 7 2024
© 2024 The Author(s)
2024
https://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Objective

To explore symptom experiences and self-management strategies from the haematological malignancy patient's perspective.

Methods

A qualitative descriptive approach was used to provide a direct and comprehensive understanding of the symptoms experienced and self-management strategies during treatment among patients with haematological malignancy. Fourteen patients with haematologic malignancies who received chemotherapy at a Chinese tertiary hospital were selected using purposeful sampling. Data were collected via semi-structured interviews and one-on-one patient sessions. The collected data were analysed using the content analysis methods. Reporting adhered to the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines.

Results

The data from this study were categorized into four themes and eight subthemes: (1) the dynamics and complexity of symptom experience (nonlinear, and overloaded symptom burden); (2) strategies for coping with symptomatic change (actively responding to challenges, and facing symptoms negatively); (3) symptom affects interaction (symptoms affect family interactions, and symptoms affect social interactions); and (4) benefit from symptom management (promoting family relationships, and regaining a new role in society).

Conclusions

Patients with haematological malignancy undergoing chemotherapy still face complex and variable symptoms, and there are still considerable challenges in symptom management. The findings underscore that health care providers should provide the necessary symptom assessment to enhance the well-being of patients based on the characteristics of the patient's symptom experience and symptom management needs at different stages of the disease.

Highlights

• Patients with haematological malignancy experience dynamic and complex symptoms. The different strategies adopted by patients to cope with the change of symptoms are the entry point for nurses to implement personalized intervention.

• This study closes the gap in understanding the disease experiences and self-management strategies of patients with haematological malignancies in China and provides lessons for other malignancies.

• Health professionals should be cognizant of dynamic changes in symptoms and the ability to manage those symptoms and recognise the importance of developing step-care interventions for this patient population.

Keywords

Haematological neoplasms
Symptom experience
Management strategies
Qualitative study
==== Body
pmcIntroduction

Haematological malignancies (HM) patients usually live with disease symptoms and treatment sequelae for an extended time. Due to the large differences between the behavior, treatment, and outcomes of hematologic malignancies and solid tumors,1 HM often imposes serious physical and psychological burdens on patients as well as family caregivers (FCs).2 Patients with HM often experience fatigue, bleeding, anaemia, insomnia, pain, and other psychological symptoms.3, 4, 5 However, due to the nature of HM and the sequelae of treatments, patients with HM and their FCs often have a greater need for supportive care,5 requiring basic information regarding diagnosis, treatment, prognosis, and other topics. This demand varies by patient, and delivery of information support from professionals is preferred.1 In addition, symptom management, disease stigma, and decision-making tradeoffs6 place a heavy burden on patients with HM and their FCs. Self-management refers to “the individual's ability to manage the symptoms, treatment, physical and psychological consequences, and lifestyle changes inherent in living with a chronic condition”.7 Studies have shown that changes in the symptoms of HM8 and the treatment of the disease are dynamic9; thus it is necessary for healthcare professionals to pay special attention to the symptom experience of patients with HM.

HM refers to a group of malignant tumours occurring in the haematopoietic and lymphoid tissues of the bone marrow and typically include leukaemia, lymphoma, and multiple myeloma.10 According to Global Cancer Statistics 2023, it is estimated that 609,820 people will die of cancer generally, which is equivalent to 1670 deaths per day. These include lymphoma (estimated new cases: 89,380; estimated deaths: 21,080), myeloma (estimated new cases: 35,730; estimated deaths: 12,590), and leukaemia (estimated new cases: 59,610; estimated deaths: 23,710).11

HM can cause a variety of clinical symptoms, including common symptoms such as fever, fatigue, anemia, bleeding and infection, as well as a variety of physical, emotional and cognitive symptoms such as fatigue, sleep disturbances, decreased appetite, difficulty concentrating and memory loss.3,4,12, 13, 14 In addition, psychological symptoms are also widespread in patients with hematologic malignancies, especially anxiety and depression.4 While HM are highly malignant and have a poor prognosis and high recurrence rate, in relapsed and refractory cases sustained remission and survival can be achieved with treatment.2,15,16 Currently, HM treatments include chemotherapy, radiotherapy, haematopoietic stem cell transplantation, and targeted therapy.4,17 The development of allogeneic haematopoietic stem cell transplantation and novel therapeutic approaches such as targeted therapy, bio specifics, and chimeric antigen receptor T cells therapies, has significantly improved haematopoietic and lymphatic diseases. However, these treatments may negatively affect the subjective symptom burden, treatment compliance, and length of hospital stay.8,18 As these symptoms recur and persist, symptom experience is closely related to the QOL of patients and affects the mental health and QOL of their families. Therefore, the role of FCs in caring for patients should not be ignored.

The symptoms of the various stages of disease progression experienced by patients with HM are caused by complex factors including cancer progression, physical effects and psychological changes associated with treatment, delayed toxic side effects of treatment, and long-term consequences of the disease, and may occur alone or simultaneously.19 Self-management has been identified as one of the 20 most urgent areas of concern for providing quality health care in the U.S. health care system and is a key success factor for chronic disease management.20 Thus, timely detection of symptom clusters and the strengthening of symptom management will be beneficial for the diagnosis, assessment, management, and formulation of optimal cancer care strategies.

Symptoms can affect disease process and social psychology, and a single symptom management pattern cannot meet the multistage nursing needs of patients. Symptom management is an important field of nursing research.21,22 Adult cancer patients often experience a range of physical or psychological symptoms while undergoing treatment for the disease. Studies have shown that symptom management theory (SMT) integrates all aspects of symptom management and provides a systematic background for improving symptom management.23 Another previous study also found that the optimal symptom management strategy for patients with HM was dynamic as the disease changed.9

There are characteristic differences between solid and non-solid tumours regarding clinical care, supportive care, and patient outcomes. There is no clear paradigm for advanced cancer, especially in haematology24 due to the huge heterogeneity of the disease, treatment protocols, outcomes, disease trajectories, and life expectancy.25 Compared to solid tumours, patients with HM are more likely to receive aggressive treatment at an advanced stage or receive hospice care.26, 27, 28 Thus, understanding the symptom experience and symptom management strategies of patients with HM can help healthcare professionals provide necessary and targeted services.

Most studies thus far have used a quantitative approach to analysis the occurrence of symptoms (or groups of symptoms) in patients with HM.4,29 These studies show that patients with HM experience dynamic changes in physical and psychological symptoms after diagnosis.30, 31, 32, 33 Few have used qualitative methods to elicit the symptom experience of patients undergoing HM treatment (e.g., haematopoietic stem cell transplantation) during hospitalisation.8 As a commonly used method, qualitative research provides a unique perspective for understanding the mechanism of symptom occurrence in patients with HM and for developing symptom management strategies. In order to fill these gaps, we adopted descriptive qualitative methods to explore the symptom experiences and symptom management processes of these patients, aiming to explore the symptom experiences and self-management strategies of adult patients with HM during hospitalization.

Methods

Design

We used a qualitative descriptive approach to provide a direct and comprehensive understanding of the symptoms experienced and self-management strategies during treatment among patients with HM in this study. Phenomenology is a method of discovering an individual's past experience or living world.34 A life experience provides the meaning of how one perceives a particular phenomenon, presenting the reality experienced in one's life.35 Adult patients with HM may experience different symptoms and symptom strategies at different stages of the disease. Descriptive phenomenological methods are applicable to explore the subjective experience of adult patients with hematologic tumors during hospitalization.

Theoretical framework

This study uses SMT to guide interviews.23,36 SMT includes three core concepts: symptom experience, components and outcomes of symptom management strategies.23,37 SMT integrates people, environment, health, and disease, emphasizing the importance of how individuals perceive and interpret symptoms and conduct symptom management during illness.38 In this study, SMT helped us develop interview guidelines around three core concepts that help investigators understand the real experience of hematologic tumor patients during chemotherapy (perception, interpretation, and management), their symptom management strategies, and the factors that influence their symptom management strategies (people, environment, health, and disease).

Participants and sampling

Semi-structured online interviews were conducted by the first author. Participants being seen at the Department of Haematology of a tertiary hospital in Fujian Province, China between August 2023 and October 2023 were selected through purposeful sampling. The inclusion criteria were as follows: (1) over 18 years of age; (2) a definitive HM diagnosis and currently receiving any HM treatment; (3) able to communicate fluently in Mandarin Chinese, (4) the patient is aware of their cancer diagnosis and is willing to participate in the study, and (5) willingness to participate and describe their experiences in the study. The exclusion criteria were as follows: (1) had severe vital organ disease; (2) had mental or cognitive disorders, such as dementia, loss of consciousness, or delirium. To build relationships with interested participants, the first author introduced eligible participants to the purpose of the study and invited their participation. Potential participants were then recruited continuously until data saturation; that is, code saturation, at the point at which no additional issues emerged.39

The first author initially reviewed patients' sociodemographic and disease characteristics, including age, sex, education level, marital status, and diagnosis, by examining electronic medical records. Prior to the commencement of the interview, a cordial relationship was established with the patient, the purpose and content of the study were explained, and written consent was obtained.

Data collection

Data were collected between August and October 2023. The initial interview guidelines were based on SMT and were prepared by the researchers after reviewing the literature and discussing them with the research team. To test the interview guideline questions and further refine the draft interview guideline, pilot interviews were conducted with two eligible patients prior to formal recruitment, and their interviews were included in the final interview data. The revised interview guidelines are shown in Table 1. All interviews were conducted by a researcher (first author), a registered nurse trained in interviewing, and a female graduate student. Prior to commencing the study, the researchers contacted potential participants at the hospital and selected the most suitable time and location for the interview, taking into account the participant's condition and preferences. In this study, face-to-face interviews were conducted primarily at the bedside of the ward. When conducting face-to-face interviews, the researchers used a bed curtain to create a comfortable and undisturbed interview environment to ensure that the one-on-one in-depth interview went smoothly. In the course of the interview process, the researchers employed the use of repetition and follow-up questions in a manner that enhanced the comprehensiveness of the data collection. Additionally, non-verbal information, such as facial expressions and body movements, was transcribed. At the conclusion of each interview, the researchers provided a brief summary of the principal topics discussed and invited the participants to offer any clarifications or supplementary information that might be of value to the study. The content and quality were reviewed by two experienced researchers. Each lasted approximately 30 min, and the patient was allowed to stop the interview if they felt uncomfortable at any time as part of the informed consent process. Immediately after each interview, the researchers wrote an interview memo documenting the intuitive feelings that impressed the researchers during the interview. No repeat interviews were conducted. All interviews in this study were recorded and anonymous at the time of transcription.Table 1 Semistructured interview questions.

Table 1Interview questions	
1. Can you tell me about your overall feelings so far? Can you tell me about any illnesses or treatment-related symptoms you've experienced recently?	
2. Can you share with me your main experience during treatment and how you manage your daily life? How do you feel these symptoms are affecting you?	
3. What symptoms did you experience during treatment and how did you manage them?	
4. Did your body change during the treatment? How do you deal with the changes in your body?	
5. Did you experience any physical changes during the treatment? How do you manage your energy?	
6. Did you experience any psychological changes during the treatment? How do you deal with these issues (emotions)?	
7. What obstacles have you encountered in managing your symptoms? Have you benefited from symptom management? Is there anything else you'd like to share with me?	

Data analysis

Data collection and preliminary analysis are carried out simultaneously. The data was transcribed verbatim within 48 hours of collection. The transcripts were cross-checked with the recordings to ensure the accuracy of the information. We used Colaizzi's seven-step analysis method40 to analyze the empirical data of symptoms using Nvivo (version 12.0). To reduce subjectivity in the analysis, the data were analyzed by two researchers (HY and YW), respectively. First, the first author read the transcript several times in order to understand it correctly. Second, important statements in the interview transcripts were identified. Third, meaningful concepts have been developed. Fourth, concepts are classified into themes and similar concepts “topics”. Fifth, the findings are integrated into an exhaustive description of the phenomenon being studied. Sixth, a comprehensive description of the basic structure of this phenomenon is given. Finally, we validated the structure by comparing it to the experience of patients. A topic is not accepted until two researchers reach a consensus. If the two researchers disagree, a third researcher (an experienced nursing professor) makes the judgment call. When no new code is extracted, the data is considered saturated.

Ethical considerations

Ethical approval was granted by the Biomedical Research Ethics Review Committee of Fujian Medical University (IRB No. 2023–139). Before the start of the study, the researchers introduced the purpose and interview process to the participants, selected the proper time and place of interviews according to participant wishes, and initiated the conversation after obtaining written informed consent from all participants. To ensure anonymity and confidentiality, all personal information was analysed and reported using codes that replaced the names of participants.

Rigor

For consistency, all interviews were conducted by the first author (HY), who had expertise in qualitative research and hematologic oncology, and direction was provided by YW, who offered expertise in symptom management and oncology care. We ensured the rigor of our inquiry by aiming to meet the following criteria: trustworthiness, transferability, reliability, and confirmability.41 In order to enhance the trustworthiness of the data, the interviews were semi-structured, allowing the participants sufficient time to describe their experiences and their own feelings. The objective of this research was to establish the transferability of the findings to similar situations or phenomena. In order to achieve this, a comprehensive description of the participants' experiences and situations was provided. To ensuring the reliability of this process, we identified and reflected upon our preconceived beliefs and perceptions of the phenomenon under study as a classification exercise.42 The reliability of this study was also maintained by using consistent questions across all interviews and by conducting a complete evaluation of the results. For consistency, interviews were crosschecked after being recorded and transcribed by two researchers (HY, and YW). Then the researchers examined the transcripts, analysed the data, categorised the data into identified themes, and discussed the results to confirm the findings and emerging topics that met the confirmability criteria. The privacy and anonymity of participants are guaranteed. To ensure the quality of the report, the COnsolidated criteria for REporting Qualitative research (COREQ) checklist was used, as detailed in Supplementary file 1.43

Results

Characteristics of participants

Nineteen participants were initially approached. Fourteen patients with HM agreed to participate, and sufficient data were obtained for this study. Reasons for refusing to participate included having no time (n = 2) and unwillingness to discuss the issue (n = 3). Of them, five were women, the mean age was (54.92 ± 11.59) years, all participants were married, most had a high school education or less (n = 11), half were religious (n = 7), and half were employed (n = 7). There were leukemia cases (n = 5), multiple myeloma cases (n = 4), lymphoma cases (n = 3), and myelodysplastic cases (n = 2) in this study (Table 2).Table 2 Characteristics of participants.

Table 2No.	Age (year)	Sex	Marital status	Education level	Religion	Employed	Relapse	Disease type	Time since diagnosis (months)	
P1	35	Male	Married	High school	No	No	Yes	Acute myelogenous leukemia	42	
P2	48	Female	Married	Middle school	Christianity	No	Yes	Acute myelogenous leukemia	6	
P3	65	Male	Married	Middle school	No	Yes	Yes	Myelodysplastic syndrome	195	
P4	60	Male	Married	Middle school	Buddhist	Yes	No	Chronic granulocytic Leukemia	122	
P5	65	Male	Married	Middle school	Buddhist	Yes	No	Myeloma	44	
P6	65	Female	Married	Primary school	Buddhist	No	No	Diffuse large B-cell lymphoma	11	
P7	65	Female	Married	Primary school	No	No	No	Myeloma	24	
P8	61	Male	Married	Primary school	Buddhist	No	No	Myeloma	16	
P9	39	Male	Married	High school	No	Yes	No	Acute lymphoblastic leukaemia	57	
P10	36	Female	Married	Middle school	No	No	No	T Lymphoblastic leukaemia	26	
P11	46	Male	Married	University	No	Yes	Yes	Hodgkin lymphoma	127	
P12	65	Male	Married	Middle school	Buddhist	Yes	No	Myeloma	35	
P13	60	Male	Married	Primary school	Buddhist	No	Yes	Myelodysplastic syndrome	123	
P14	59	Female	Married	Primary school	No	No	No	Mantle cell lymphoma	27	

Fundamental themes and subthemes

The data from this study were categorized into four themes and eight subthemes: (1) the dynamics and complexity of symptom experience (nonlinear, and overloaded symptom burden); (2) strategies for coping with symptomatic change (actively responding to challenges, and facing symptoms negatively); (3) symptom affects interaction (symptoms affect family interactions, and symptoms affect social interactions); and (4) benefit from symptom management (promoting family relationships, and regaining a new role in society) (Table 3).Table 3 Themes and subthemes.

Table 3Themes	Sub-themes	
1. The dynamics and complexity of symptom experience	Nonlinear	
Overloaded symptom burden	
2. Strategies for coping with symptomatic change	Actively responding to challenges	
Facing symptoms negatively	
3. Symptom affects interaction	Symptoms affect family interactions	
Symptoms affect social interactions	
4. Benefit from symptom management	Promoting family relationships	
Regain a new role in society	

The dynamics and complexity of symptom experience

Nonlinear

The symptoms of patients with HM change as the treatment phase progresses, and some symptoms are not linear, but show dynamic changes, which poses a challenge for patients.After taking chemotherapies, I often feel tired, and as I get used to fatigue, other symptoms, such as bleeding, occur. It often caught me off guard. The symptoms seemed to have no pattern and I couldn't prepare for them in advance. (P1)

I feel like my symptoms keep coming back over and over again, and I can't prepare for them in advance. Symptoms aren't like a list that you can cross off one by one. You can't predict what the next symptom will be. (P2)

Overloaded symptom burden

The characteristics of the disease itself, as well as the side effects of treatment, contribute to the patient's symptom burden. Most patients reported that they suffered from a high burden of symptoms, such as fatigue, sleep disturbances, and low mood.I often feel tired, and this fatigue makes me unable to maintain daily activities, which makes me feel depressed, Fatigue also made me sleep restlessly. (P6)

Since the illness, I often can't sleep, the physical discomfort and mental stress often keep my eyes open until dawn one night, Because of not sleeping well, I feel my mood is very low and I always have no interest in doing other things. (P9)

Strategies for coping with symptomatic change

Actively responding to challenges

In this study, active response to challenges refers to patients adopting a positive attitude and ways to solve problems when facing challenges such as the burden of symptoms, psychological pressure, and the external environment caused by the disease.I read a lot of professional books, my family helped me consult some health care providers, and we put together a lot of methods and strategies to manage symptoms. (P4)

I started at the county hospital, but later I looked up some information on the internet and someone patients recommended a provincial hospital, so I did not hesitate to go to the provincial hospital for treatment immediately, my family is very supportive of my decision and will help me face the challenge. (P8)

Facing symptoms negatively

Negative coping with symptoms mainly included a decrease in or abandonment of daily activities and the loss of desire to fight the disease. The treatment of HMs is a long-term process during which some patients adopt an attitude of resistance or resignation owing to changes in their physical fitness level.My family asked me to exercise more, but I refused, I didn't want to move, I didn't want treatment, I wanted to go home and accept my fate. (P5)

I lost hope of survival, I felt there was no cure for my disease, and the treatment cost a lot of money … I want to give up treatment because I don't see any hope, and this disease keeps coming back and forth, causing me and my family nothing but pain. (P9)

Symptom affects interaction

Symptoms affect family interactions

Most patients feel that their symptoms affect their lives, mainly in their daily activities, physical and psychological effects.When I get sick, I often worry that there is no one to take care of my children, and I feel that I am dragging my family down psychologically. (P4)

I rarely talk to my husband. I know he's already under a lot of pressure, and if I tell him anything else, it's gonna be even more stressful. (P10)

Symptoms affect social interactions

Symptoms can place a physical and psychological burden on the patient and affect the patient's social activities. At the same time, the stigmatization of the disease may lead to the burden of social interaction.I dare not go outside, afraid to hear others say that they are ill, but also feel their family difficulties, afraid of others say, so now every day would rather stay at home to sleep. (P13)

I think it's a shame to be sick, and even though I don't want to be sick, I just don't want people to know about it. So when my friends asked me out to play, I found many excuses to escape. I always feel like people are looking at me differently. (P3)

Benefit from symptom management

Promoting family relationships

In the process of disease treatment, some patients perceived the beauty of life and the value of their family relationships. An illness was usually an emergency that may potentially promote family communication and consolidate the relationship between family members, thus helping patients feel gratitude for life.Although it is very uncomfortable after being sick, I am still very grateful to my parents for bringing me to this world. (P3)

After my illness, my children gradually learned to take care of me and understand me, I feel very happy. (P7)

Regain a new role in society

Patients with HM typically require long-term hospitalisation and regular follow-up visits. During this process, patients continued to accumulate disease-related knowledge and master management methods to cope with symptom changes. Some realised their social value by encouraging relatives and friends to participate in volunteer blood donation, setting an example, and acting as volunteers.Before I was sick, I didn't like to do some volunteer activities, I thought it was a waste of time. But now I volunteer to share my experiences with other patients and their families for free, and I think it gives me a new lease of life. (P1)

Before I got sick, I thought it was meaningless to donate blood without compensation, but after I got sick, I realized that it was a very meaningful thing. Therefore, in the process of communicating with my family and friends, I also changed my identity and became a propagander, encouraging my family and friends to participate in blood donation. (P14)

Discussion

This descriptive qualitative study explores symptom experience and strategies for self-management in adult patients with HM undergoing chemotherapy. This study found that patients with HM experience multiple symptoms. Heavy symptom burden may have potential impacts on patients' family interactions and social interactions, while negative emotions and coping styles may reduce patients' hope for survival, which poses a significant challenge for healthcare professionals to help patients with self-management. In addition, during symptom management, patients adopt different strategies to cope with changing symptoms. The results of this study complement the understanding of symptomatic experience and self-management behavior in adult patients with HM. At the same time, due to the complexity and multilaterality of symptoms, patients with HM also suffer a huge physical and mental burden. Studies have shown that patients' symptom burden improves over time, which is consistent with the findings of Ebraheem et al.44

Our results also indicated that patients typically adopted a variety of strategies to cope with changes in their disease after diagnosis. Positive strategies to cope with changes in symptoms included timely psychological adjustment, and action to prevent symptoms in advanced, which echoes the results of a previous study.9 For patients with HM, negative emotions and states along with the complexity of disease treatment often affected their behaviour.45,46 Studies have shown that patients with HM have high levels of anxiety and depression and that their dignity and spirituality are affected by the disease itself and stigma. This further reduces the QOL and negatively affects coping ability.4,47 During illness, patients often need to give up social roles to adapt to the reality of living with the disease, and there is a long-term correlation between identity renegotiation and the cancer experience.48 After long-term hospitalisation, patients and their FCs were shown to gradually master the methods of symptom assessment, prevention, and treatment through the accumulation of knowledge and skills, which has positive significance for the monitoring of patients' symptoms.8 Therefore, healthcare professionals should enhance the dynamic assessment of patients' symptoms, pay attention to their psychological symptomatic problems, and develop targeted interventions to reduce their symptom burden.

The treatment and recovery of the disease is a long and arduous process, which is not only a great challenge for the patient but also a heavy burden on patient families. Because patients must face physical limitations, social network limitations, work interruptions, and other problems during hospitalisation, family status will be symbolically reversed, and family members must act as the main pillars to help the family run normally. If a parent is sick, there is a family shift in caregiving skills. This poses a major challenge for the entire family.3 However, patients in this study limited their time with family members for various reasons during hospitalisation and consolidated their emotions through communication. Communication plays an important role in FCs.4 In addition, patients and their FCs can regain their sense of social identity and enhance their sense of self-worth by answering fellow patients' questions or participating in volunteer activities. It may be beneficial for healthcare professionals to consider ways of enhancing the patient's self-identity, including improving family and social interactions, in order to assist the patient in better coping with the adverse effects of symptoms.

For the study of symptom management of cancer patients, the traditional model is usually carried out through health education or offline face-to-face intervention, but there are problems of high dropout rate and poor compliance. In China, a series of adaptive systems for cancer patient reporting outcomes have been developed.49, 50, 51 Many of these studies have focused on breast cancer, with less attention paid to nonsolid tumours. The relief of a single symptom in a symptom cluster may potentially lead to synergistic relief of the entire symptom cluster.29 Due to insufficient nursing human resources, family knowledge and skills training are essential, but this may require more time and training. Previous study has shown that perceived benefits and experience-driven can play a positive role in enhancing symptom self-management. Clinical caregivers should pay further attention to the symptom self-management ability of HM patients and take certain measures to provide information, resources, and social support to HM patients to improve their survival experience.52 This study provides a new perspective for clinical nurses from the symptom experience and management strategies of patients with HM, suggesting that nurses should continuously evaluate and track the symptom changes of patients with HM. The question of how to accurately track the dynamic changes in patients' symptoms with the help of the Internet and big data and intervene in the timing, tools, and methods of symptom management deserves further discussion in future research.

Strengths and limitations

Our study has some limitations. First, it was conducted in a tertiary hospital in China. Therefore, the interpretation of the results is limited due to the small sample size and single source. Second, the use of face-to-face semi-structured interviews with independent interviewers may have led to limited social desirability bias. Third, purposeful sampling may have led to the selection of patients interested in disease experiences and self-management strategies. Fourth, due to the selection of subjects in this study was limited by age. Thus, the results of this study cannot be generalized to children and adolescents.

Relevance to clinical practice

The symptom experience of patients with haematologic tumours undergoing chemotherapy presents dynamic complexity as disease progression leads to self-management, which can be difficult, especially in older patients. Healthcare systems must proactively deliver tailored care interventions that respond to patient-reported outcomes, provide patients with the resources necessary to improve their self-management, facilitate their role in decision-making, and improve their QOL. For patients who respond well to treatment and benefit from the disease, healthcare personnel can give full play to their ability to strengthen the social role of peer support to help them face negative emotions and adverse coping styles in treatment and care positively.

Conclusions

The study's results provide new insights into the way in which patients with HM undergoing chemotherapy perceive and interpret their multiple concurrent symptoms and contribute to our understanding of symptom experience and self-management strategies in this population of HM. Its findings indicate that the patients' experience of symptoms is dynamic and nonlinear, and some may benefit from the experience of the disease to face life more positively. They highlighted the role that different stages of the disease and differences between individuals may play in the self-management of patient experiences and multiple coexisting symptoms. This will inform the development and testing of patient-centred self-management interventions for symptoms. Healthcare professionals should dynamically track symptom changes in patients with HM and develop personalised interventions to help patients with HM to fully perceive the benefits of symptom management, which in turn improves the quality of survival of patients with HM.

Funding

This study is supported by Startup fund for the High-level talent, 10.13039/501100013795 Fujian Medical University (Grant No. XRZX20220 ), Startup Fund for scientific research, 10.13039/501100013795 Fujian Medical University (Grant No. 2022QH1010 ) and Young and Middle-aged Teachers Education Research Project of Fujian Province (Science and technology, Grant No. JAT231033 ). The funders had no role in the design, conduct, or writing of this research.

CRediT authorship contribution statement

Hui Yang: Conceptualization, Data curation, Formal analysis, Investigation. Software, Investigation. Methodology, Data curation. Bizhao Wu: Writing – review & editing. Rong Hu: Data curation, Writing – original draft, Writing – review & editing, Investigation. Software, Investigation. Methodology. Ying Wang: Supervision, Validation, Project administration, Writing – original draft, Writing – review & editing. All authors had full access to all the data in the study, and the corresponding author had final responsibility for the decision to submit for publication. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Ethics statement

The study was approved by the Biomedical Research Ethics Review Committee of Fujian Medical University (IRB No. 2023–139). All participants provided written informed consent.

Declaration of competing interest

The authors declare no conflict of interest. The corresponding author, Dr. Ying Wang, is an editorial board member of Asia-Pacific Journal of Oncology Nursing. The article was subject to the journal's standard procedures, with peer review handled independently of Dr. Wang and their research groups.

Data availability statement

Data supporting the findings of this study are available upon reasonable request from the corresponding authors. These data will not be made public owing to privacy and ethical restrictions.

Acknowledgements

The authors gratefully thank all participants who generously shared their valuable time and experience in this study.

Declaration of generative AI and AI-assisted technologies in the writing process

No AI tools/services were used during the preparation of this work.

Appendix A Supplementary material

The following is the supplementary data to this article:Multimedia component 1

Multimedia component 1

Appendix A Supplementary data to this article can be found online at https://doi.org/10.1016/j.apjon.2024.100563.
==== Refs
References

1 Rood J.A. Eeltink C.M. van Zuuren F.J. Perceived need for information of patients with haematological malignancies: a literature review J Clin Nurs 24 2015 353 369 24890671
2 Howlader N. Noone A.M. Krapcho M. SEER cancer statistics review, 1975–2017 2020 Bethesda MD, USA https://seer.cancer.gov/csr/1975_2017/
3 Wang C. Yan J. Chen J. Factors associated with quality of life of adult patients with acute leukemia and their family caregivers in China: a cross-sectional study Health Qual Life Outcome 18 1 2020 8 10.1186/s12955-020-1269-8
4 Wang C. Chen J. Wang Y. Effects of family participatory dignity therapy on the psychological well-being and family function of patients with haematologic malignancies and their family caregivers: a randomised controlled trial Int J Nurs Stud 118 2021 103922 10.1016/j.ijnurstu.2021.103922
5 Yan J. Wang Y. Chen J. Unmet supportive care needs and its relation to quality of life among adult acute leukaemia patients in China: a cross-sectional study Health Qual Life Outcome 18 1 2020 10.1186/s12955-020-01454-5
6 Wang Y. Yan J. Chen J. Comparison of the anxiety, depression and their relationship to quality of life among adult acute leukemia patients and their family caregivers: a cross-sectional study in China Qual Life Res 30 7 2021 1891 1901 10.1007/s11136-021-02785-6 33595826
7 Barlow J. Wright C. Sheasby J. Self-management approaches for people with chronic conditions: a review Patient Educ Counsel 48 2 2002 177 187 10.1016/s0738-3991(02)00032-0
8 Chen J. Yu J. Xie M. Understanding the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization: findings from a qualitative longitudinal study Support Care Cancer 30 12 2022 10137 10147 10.1007/s00520-022-07428-1 36350378
9 Wang Ying Wu Yong Rong H. Decision-making trade-offs: a classic grounded theory study of Chinese acute leukaemia patients and their family caregivers across the trajectory of illness J Clin Nurs 32 21-22 2023 7834 7845 10.1111/jocn.16851 37614047
10 Arber D.A. Orazi A. Hasserjian R. The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia Blood 127 20 2016 2391 2405 27069254
11 Siegel R.L. Miller K.D. Wagle N.S. Cancer statistics, 2023 CA Cancer J Clin 73 1 2023 17 48 10.3322/caac.21763 36633525
12 Liao Z. Wang C. Lan X. Never forsake-The positive experiences of dyadic coping among patients with acute leukemia and their spouses: a qualitative study Eur J Oncol Nurs 62 2022 102262 10.1016/j.ejon.2022.102262
13 Pallin N.D. O'Connor M. Gannon A. Experiences of and preferences for self-management among low grade non-Hodgkin's lymphoma survivors: a qualitative interview study Eur J Oncol Nurs 66 2023 10.1016/j.ejon.2023.102378
14 Gozde Sezgin Merve Bektas Hicran The effect of web-based intervention programs on self-management and symptom management in patients with lymphoma: a systematic review of randomized controlled trials Jpn J Nurs Sci 19 2 2021 10.1111/jjns.12460
15 Xie M. Wang C. Chen J. Barriers to seeking psychosocial support among adult patients with haematologic neoplasms: a qualitative study Support Care Cancer 30 3 2022 2613 2620 10.1007/s00520-021-06699-4 34812953
16 LeBlanc T.W. A E.-J. When and why should patients with hematologic malignancies see a palliative care specialist? Hematology. 2015 471 478 26637760
17 Esser P. Kuba K. Mehnert A. Quality of life in survivors of hematological malignancies stratified by cancertype, time since diagnosis and stem cell transplantation Eur J Haematol 101 3 2018 340 348 29858505
18 El-Jawahri A.R. Traeger L.N. Kuzmuk K. Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation Cancer 121 6 2015 951 959 10.1002/cncr.29149 25469752
19 Karabulu N. Erci B. Özer Nadiye Symptom clusters and experiences of patients with cancer J Adv Nurs 66 1 2010 11
20 Cuthbert C.A. Farragher J.F. Hemmelgarn B.R. Self-management interventions for cancer survivors: a systematic review and evaluation of intervention content and theories Psycho Oncol 28 11 2019 2119 2140 10.1002/pon.5215
21 Hoffman A.J. Enhancing self-efficacy for optimized patient outcomes through the theory of symptom self-management Cancer Nurs 36 1 2013 E16 E26 10.1097/NCC.0b013e31824a730a 22495550
22 Howell D. Harth T. Brown J. Self-management education interventions for patients with cancer: a systematic review Support Care Cancer 25 4 2017 1323 1355 10.1007/s00520-016-3500-z 28058570
23 Mathew A. Doorenbos A.Z. Vincent C. Symptom management theory Adv Nurs Sci 44 3 2021 E93 E112 10.1097/ans.0000000000000347
24 Chan K.Y. Gill H. Chan T.S. Early integrated palliative care for haematology cancer patients – the impact on symptom burden in Hong Kong Ann Palliat Med 10 6 2021 6316 6324 34237956
25 Hall A. Campbell H.S. Sanson-Fisher Unmet needs of Australian and Canadian haematological cancer survivors: a cross-sectional international comparative study Psycho Oncol 22 9 2013 2032 2038
26 LeBlanc T.W. Addressing end-of-life quality gaps in hematologic cancers: the importance of early concurrent palliative care JAMA Intern Med 176 2 2016 265 266 26720324
27 LeBlanc T.W. Advance care planning and palliative care specialists in malignant hematology and stem-cell transplantation: on why it takes a village J Oncol Pract 14 1 2018 3 5 28981390
28 LeBlanc T.W. Abernethy A.P. Casarett D.J. What is different about patients with hematologic malignancies? A retrospective cohort study of cancer patients referred to a hospice research network J Pain Symp Manag 49 3 2015 505 512
29 Zeng L. Huang H. Qirong C. Multiple myeloma patients undergoing chemotherapy: which symptom clusters impact quality of life? J Clin Nurs 32 2023 7247 7259 37303229
30 Albrecht T.A. Physiologic and psychological symptoms experienced by adults with AL: an integrative literature review Oncol Nurs Forum 41 3 2014 286 295 24769593
31 Bevans M.F. Mitchell S.A. S M. The symptom experience in the first 100 days following allogeneic hematopoietic stem cell transplantation (HSCT) Support Care Cancer 16 11 2008 1243 1254 10.1007/s00520-008-0420-6 18322708
32 Niscola P. Romani C. Scaramucci L. Pain syndromes in the setting of haematopoietic stem cell transplantation for haematological malignancies Bone Marrow Transpl 41 9 2008 757 764
33 Wang J. Shen N. Zhang X. Care burden and its predictive factors in parents of newly diagnosed children with acute lymphoblastic leukemia in academic hospitals in China Support Care Cancer 25 12 2017 3703 3713 28714044
34 van Manen M. Researching Lived Experience: Human Science for an Action Sensitive Pedagogy 1990 State University of New York Press
35 Brant J. Dudley W. Beck S. Evolution of the dynamic symptoms model Oncol Nurs Forum 43 5 2016 651 654 10.1188/16.Onf.651-654 27541557
36 Baydoun M. Barton D.L. Arslanian-Engoren C. A cancer specific middle-range theory of symptom self-care management: a theory synthesis J Adv Nurs 74 12 2018 2935 2946 10.1111/jan.13829 30132962
37 Ryan P. Sawin K.J. The individual and family self-management theory: background and perspectives on context, process, and outcomes Nurs Outlook 57 4 2009 217 225.e216 10.1016/j.outlook.2008.10.004 19631064
38 Silva L.A.G.P.D. Lopes V.J. Mercês N.N.A.D. Symptom management theory applied to nursing care: scoping review Rev Bras Enferm 74 3 2021 10.1590/0034-7167-2020-1004
39 Hennink M.M. Kaiser B.N. Marconi V.C. Code saturation versus meaning saturation: how many interviews are enough? Qual Health Res 27 4 2017 591 608 10.1177/1049732316665344 27670770
40 PF, C Psychological Research as the Phenomenologist Views it 1978 Oxford University Press, Existential Phenomenological Alternative for Psychology
41 Lincoln Y.S. Guba E.G. Naturalistic Inquiry 1985 Sage Publications Inc
42 Polit D.F. Beck C.T. Essentials of Nursing Research: Appraising Evidence for Nursing Practice 2009 Lippincott Williams & Wilkins Philadelphia, PA
43 Allison Tong Peter Sainsbury Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups Int J Qual Health Care 19 6 2007 349 357 17872937
44 Ebraheem M.S. Seow H. Balitsky A.K. Trajectory of symptoms in patients undergoing autologous stem cell transplant for multiple myeloma: a population-based cohort study of patient-reported outcomes Clin Lymph Myeloma Leuk 21 9 2021 e714 e721 10.1016/j.clml.2021.05.002
45 Tariman J.D. Doorenbos A. Schepp K.G. Older adults newly diagnosed with symptomatic myeloma and treatment decision making Oncol Nurs Forum 41 4 2014 411 419 24969250
46 Tariman J.D. Doorenbos A. Schepp K.G. Patient, physician and contextual factors are influential in the treatment decision making of older adults newly diagnosed with symptomatic myeloma Cancer Treat Commun 2 2-3 2014 34 47 25553273
47 Chen J. Yan J. Wang C. Effects and satisfaction of dignity therapy among patients with hematologic neoplasms in the Chinese cultural context: a randomized controlled trial Support Care Cancer 29 11 2021 6819 6829 10.1007/s00520-021-06227-4 33999270
48 Pearce S. Whelan J. Kelly D. Renegotiation of identity in young adults with cancer: a longitudinal narrative study Int J Nurs Stud 102 2020 103465 10.1016/j.ijnurstu.2019.103465
49 Cai T. Zhou T. Chen J. Identification of age differences in cancer-related symptoms in women undergoing chemotherapy for breast cancer in China BMC Wom Health 23 1 2023 100 10.1186/s12905-023-02256-9
50 Cai T. Zhou T. Yuan C. Heterogeneity of symptoms and functions among women receiving chemotherapy for breast cancer in China: a multicentre, cross-sectional study Front Public Health 10 2022 952710 10.3389/fpubh.2022.952710
51 Yu Chunfang Cai Tingting Zhou Tingting Classification of symptom subtypes in patients with multiple myeloma during treatment: a cross-sectional survey study in China BMJ Open 13 3 2023 e066467 10.1136/bmjopen-2022-066467
52 Amonoo H.L. Harnedy L.E. Staton S.C. Peer support in patients with hematologic malignancies: a systematic review Bone Marrow Transpl 57 8 2022 1240 1249 10.1038/s41409-022-01709-3
