Facing a Dilemma: The Experiences of Caregivers of Elderly Patients with Terminal Cancer—A Qualitative Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Facing a Dilemma: The Experiences of Caregivers of Elderly Patients with Terminal Cancer—A Qualitative Study Yuli Yang, Xiaoyan Liang, Qian Liu, Jing Liu This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5295000/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 20 Feb, 2025 Read the published version in Supportive Care in Cancer → Version 1 posted 9 You are reading this latest preprint version Abstract Purpose: Family members predominantly serve as the primary caregivers for cancer patients. However, the experiences of caregivers in regions lacking palliative care support have not been thoroughly investigated, particularly when elderly cancer patients enter the terminal phase. This study aims to explore the experiences of caregivers for elderly cancer patients in the terminal stage, focusing on areas with limited palliative care resources. Methods: A qualitative study was conducted from March to October 2023. Face-to-face, in-depth, semi-structured interviews were employed to collect data from 13 Chinese family caregivers of elderly terminal cancer patients. Participants were recruited using purposive sampling. The interview data were analyzed using Colaizzi's seven-step analysis method. The study's rigor was ensured through the application of Lincoln and Guba's criteria. Results: [Three main themes and 11 sub-themes were identified through data analysis: (1)Physical difficulty,(2)Psychological distress, and(3) Desiring support .] Conclusion: The development and provision of respite services, enhancement of death education, improvement of physicians' communication skills regarding end-of-life information, and establishment of supportive home care plans are deemed necessary. It is recommended that local governments refine the palliative care system, ensuring seamless integration of palliative care from top-tier hospitals to communities and homes. These measures aim to meet caregivers' expectations while assisting them in overcoming their challenges. Caregivers Dilemma Experiences Elderly Cancer Patients Terminal Illness Introduction The incidence of cancer exhibits a positive correlation with age, rendering the elderly population particularly susceptible to this disease. Cancer has been identified as one of the primary causes of mortality among older adults [ 1 , 2 ]. Global cancer incidence is projected to surpass 27 million new cases annually by 2040, partly attributed to population aging and increased susceptibility to age-related diseases such as cancer [ 3 ]. In China, the elderly population currently stands at approximately 170 million and is anticipated to reach 480 million by 2050. This demographic shift is expected to elevate the aging rate from 14.3–34.1%. The accelerating aging process in China has led to a continuous rise in both cancer incidence and mortality rates, posing a significant threat to public health [ 4 ]. As cancer patients progress to the terminal stage, the care-giving burden intensifies considerably. The terminal stage of cancer is characterized by the exhaustion of surgical and pharmacological treatment options, with an estimated survival time of 3–6 months [ 5 ]. Despite the availability of various cancer treatments, a substantial proportion of elderly cancer patients face treatment inefficacy and enter the terminal stage. At this juncture, the cumulative effects of prior cancer treatments, complications, physical decline, multiple comorbidities, and cognitive disorders severely impact the quality of life of these elderly patients. This deterioration is particularly pronounced in the terminal stage, necessitating enhanced physiological, psychological, and social care. Consequently, caregivers of elderly terminal cancer patients are required to provide comprehensive care and support to their families [ 6 ]. The resources and support available to caregivers vary significantly across countries. For instance, Oman, a developed Asian nation, offers more extensive resources for patients and their families [7]. In contrast, China heavily relies on family caregivers as the primary source of social support for elderly cancer patients, resulting in a substantial care-giving burden [ 8 ]. Palliative care adheres to a holistic care philosophy, recognizing family members as care recipients alongside patients. In response to the challenges posed by an aging population and the high incidence of cancer, the development of palliative care has emerged as a key strategy in China. In 2017, China issued the "Basic Standards for Palliative Care Centers (Trial)", "Management Standards for Palliative Care Centers (Trial)", and "Practice Guidelines for Palliative Care (Trial)" to expedite the advancement of palliative care services. Economically developed regions such as Beijing, Shanghai, and Hangzhou have established palliative care guidance centers, significantly contributing to the high-quality development of palliative care. However, Ningxia, located in northwest China, faces economic challenges and lags in palliative care development. The region has yet to establish a comprehensive palliative care service system. Consequently, the majority of terminal patients are compelled to return home. In the absence of adequate palliative care support, it becomes crucial to investigate the experiences of family members in their care-giving roles. This study aims to explore how family caregivers navigate their responsibilities and challenges in providing care to elderly terminal cancer patients in a region with limited palliative care resources. To date, several studies in China have explored the experiences of family members in palliative care. These investigations have encompassed various aspects, including decision-making processes in advanced cancer treatment [ 9 ], care-giving burden and associated needs [ 10 ], care provision by relatives [ 11 ], care-giving experiences during palliative chemotherapy for lung cancer [12], and positive care-giving experiences [ 13 ]. However, these studies have not specifically focused on elderly cancer patients. Early palliative care advocates for the integration of palliative services into oncology and other medical disciplines, emphasizing the importance of addressing individual needs and comprehending unique experiences of suffering [ 14 ]. International literature, particularly meta-synthesis results, has revealed that family caregivers express their spirituality in multifaceted ways. This spiritual expression contributes to imbuing the care provided with meaning and prompts a reassessment of the caregivers' life perspectives and their understanding of suffering [ 15 ]. The timing of palliative care referrals has been identified as a critical factor in shaping the receptiveness of both patients and their caregivers towards palliative care interventions [16]. While research has been conducted on family caregivers' experiences during the hospital-to-home transition of older adults, revealing significant stress and challenges, these studies have not specifically addressed the context of elderly cancer patients [ 17 ]. Consequently, a significant knowledge gap exists regarding the experiences of caregivers for elderly cancer patients during the terminal phase of palliative care, particularly in regions with limited palliative care services. This study aimed to identify the specific difficulties and challenges faced by caregivers of elderly terminal cancer patients. The objectives were to obtain effective information to establish a foundation for intervention measures, to facilitate the development of education and support programs for caregivers, and to provide valuable insights for constructing a palliative care service system tailored to elderly terminal cancer patients in economically underdeveloped areas. Methods This qualitative descriptive study employed in-depth interviews to capture participants' experiences. The reporting of this study was guided by the Standards for Reporting Qualitative Research, ensuring methodological rigor and transparency. Participants The study focused on caregivers of elderly terminal cancer patients who had been discharged from hospitals in Yinchuan City, Ningxia, China. The research was conducted at an oncology specialty hospital with a capacity of 500 beds and an annual inpatient volume of 9,000 visits. A purposive sampling method, incorporating maximum variation [ 33 ], was employed to select participants between March 1 and October 30, 2023. This approach ensured diversity in characteristics such as sex, age, education level, beliefs, and length of care experience. The inclusion criteria for this study were defined as follows: (a) Caregivers must be 65 years of age or older and possess the ability to communicate fluently in Mandarin. (b) A minimum care-giving duration of two years was required. (c) Participants were expected to have some understanding of palliative care concepts. (d) Willingness to participate in the interview process was essential. Exclusion criteria were established as: (a) Poor health conditions that would impede participation in interviews. (b) Inability to comprehend or respond to questions effectively. Participant enrollment continued until data saturation was achieved, which is considered the gold standard for determining sample size in qualitative research. Data saturation was deemed to have occurred when new interviews ceased to provide additional novel information. A final sample of 13 cases was included in the study(see Table 1 ). Table 1 General Information of the Study Subjects (n = 13) ID Caregiver’s Caregiver’s Relationship Caregiver’s Care-giving Duration Patient’s Patient’s Patient’s Patient’s Sex Age Job Disease Age Sex Job A1 Male 70 Spouse Retried 8 years Breast Cancer 69 Female Retried A2 Male 55 Son Employed 5 years Lung Cancer 78 Male farmer A3 Female 45 Daughter worker 2 years Cervical Cancer 70 Female Retried A4 Female 56 Daughter Retried 3 years Lung Cancer 80 Male Retried A5 Male 53 Son Employed 5 years Stomach Cancer 83 Male farmer A6 Male 72 Spouse Retried 6 years Ovarian Cancer 70 Female Retried A7 Male 42 Son Employed 7 years Bladder Cancer 71 Male Retried A8 Female 70 Spouse Retried 4 years Rectal Cancer 72 Male Retried A9 Male 51 Son Teacher 5 years Bladder Cancer 77 Male Retried A10 Female 48 Daughter Employed 2 years Ovarian Cancer 74 Female Retried A11 Female 68 Spouse housekeeper 4 years Stomach Cancer 73 Male Retried A12 Female 75 Spouse Retried 2 years Prostate Cancer 76 Male Retried A13 Male 73 Spouse Retried 4 years Lung Cancer 70 Female Housekeeper Data Collection A semi-structured interview protocol with open-ended questions was developed by the primary investigator (Y.Y.L) based on a comprehensive literature review. The protocol was subsequently refined through collaborative discussions among research team members. To ensure the efficacy of the interview questions, a pilot test was conducted with three participants who were not included in the final study. Minor revisions were implemented by two researchers (LQ, LXY) who possessed extensive experience in qualitative interview techniques and had completed formal training in qualitative research methods, including advanced interview techniques. The final interview guide comprised the following key questions: (1) How would you describe your overall experience of caring for an elderly patient with terminal cancer? (2) What are the most significant challenges you have encountered during the care-giving process? (3) What specific forms of support or assistance do you believe would be most beneficial to you in your role as a caregiver? Y.Y.L, a Palliative Care Specialist Nurse with substantial clinical experience working with elderly terminal cancer patients and their families, conducted the interviews. The researcher's background facilitated the establishment of trust with the participants. To encourage detailed descriptions of participants' experiences, follow-up questions were employed, such as "How did that experience impact you?", "What transpired subsequently?", and "What were your thoughts at that moment?" Prior to each interview, the study's objectives were thoroughly explained to the participants, and strict confidentiality of all conversations was assured. The primary investigator (Y.Y.L) briefed participants about the study and informed them of their right to withdraw from participation at any time. Upon obtaining verbal agreement, participants provided written informed consent. All interviews were audio-recorded and supplemented with field notes. The primary researcher maintained a neutral stance throughout the interviews, avoiding leading questions and employing effective conversational techniques such as active listening, probing questions, and reflective summarization. Data Analysis Colaizzi's 7-step analysis, a systematic approach commonly employed in phenomenological studies to analyze and comprehend participant experiences, was utilized in this study. The seven phases encompass: familiarization with the data, extraction of meaningful perspectives, generation of initial codes, clustering, detailed description, definition and naming of themes, and participant verification. The interviews were audio-recorded and transcribed verbatim by the first author (YYL) within 24 hours, with the transcripts being double-checked by the second author (YQ). Three researchers (YYL, LQ, and LXY) independently read the transcripts line by line and proceeded with data analysis by independently coding the data extracts from all interviews. This process involved writing notes and codes in the margins of the extracts. Several meetings were held among the authors to discuss and reach a consensus on the coding. Based on the coding, an initial thematic map was created to form themes. Across the data set, all authors identified a sense of significance and relationships between the different themes. These themes were discussed, reviewed, and defined until agreement was reached. Ultimately, one main theme and six sub-themes reflecting the content of the interviews were developed. Results After conducting 13 interviews, data saturation was reached, indicating that the gathered information was sufficient to provide a comprehensive description of the topic. The demographic characteristics of the participants are summarized in Table 1 . Through the data analysis process, three main themes were identified: Physical Difficulty, Psychological Distress, and Desiring Support. Theme 1: Physical Difficulty Increased Frailty and Comorbidities The majority of caregivers reported experiencing extreme physical exhaustion due to the long-term illnesses and extensive care requirements of elderly cancer patients. Caregivers of different identities faced unique challenges. Elderly spouses, who were also growing weaker and more susceptible to illness, struggled with the physical strain of care-giving. Children who served as caregivers often had to take leave from their demanding work schedules, contributing to their physical exhaustion. "My spouse already has diabetes and hypertension, and with cancer on top of that, it's like adding insult to injury. I also have diabetes and hypertension, and I can't stand the physical strain. When will it end...".[ A1] Chronic care-giving Exhaustion Elderly cancer patients require round-the-clock companionship during hospitalization, and the care-giving tasks are highly intricate. Prolonged, repetitive care-giving leads to caregiver muscle fatigue, back pain, and other physical discomforts, including sleep deprivation and poor appetite. "... I take care of my father by washing him up, serving meals, buying medicine, and monitoring her intravenous fluids during the day. At night, I also have to help her turn over and assist her with going to the bathroom. I can't even enjoy my meals or get a good night's sleep...".[ A4] Theme 2: Psychological Distress A Profound Sense of Helplessness The vast majority of caregivers expressed a profound sense of helplessness, with the assistance they receive being severely limited. Major hospitals that frequently administer chemotherapy prioritize beds for patients who can continue their treatments, and terminal patients are no longer considered part of that system; they are required to be discharged. Upon discharge, there is a scarcity of hospitals available for admission, leading to an overwhelming feeling of helplessness. "...After trying all options, no hospital is willing to continue treating us; we have no choice but to go home and wait for death...".[ A1] A Strong Sense of Uncertainty Most caregivers in this study experienced a strong sense of uncertainty. They are unaware of when the patient will pass away, what types of painful symptoms will manifest, or what resources are available to assist them. This uncertainty about the future contributes to their psychological distress. "I don't know how long my spouse will live, how much longer she will suffer, what kind of painful symptoms will appear after we return home. I've heard about severe pain, coughing up blood, shortness of breath, vomiting blood, and other symptoms, and I don't know how to cope...".[ A6] Fear of Home Death Many caregivers experience panic at the prospect of the patient passing away at home and express a preference for the patient to die in the hospital setting. This fear is driven by several factors. Firstly, caregivers are concerned that the patient will endure greater suffering and pain if they remain at home. Secondly, they harbor doubts about their family's ability to cope with the physical, mental, and practical challenges associated with a home death. Thirdly, influenced by societal perceptions, caregivers worry about being judged as disrespectful to the patient and fear that a house where a death has occurred will prove difficult to sell in the future. "I dread the potential gossip that may arise if my spouse were to pass away at home, with people suggesting that we failed to provide proper care. The ideal scenario would be for her to pass away in the hospital setting. My primary concern is the unpredictable situations that we may be ill-equipped to handle. Additionally, I worry about the psychological trauma it could inflict upon the children. As I am also advancing in age, I fear that I may lack the physical and mental capacity to manage the various challenges that may arise at home."[A6] Pronounced Anticipatory Grief Many caregivers have come to accept the reality of the elderly patient's impending death, and anticipatory grief is a prominent feature of their experience. The elderly patients have made immense contributions to the family unit, often serving as the backbone of the household. As caregivers witness their loved one's gradual decline and approach towards death, they are overcome by a profound sense of sadness. "My mother has been the pillar of our family and has made immeasurable contributions to our home. She has always been the one to worry about every detail, big and small. However, since her cancer diagnosis two years ago, her sense of loss has become particularly pronounced. Throughout her life, she has been a beacon of strength, but now, as she grows weaker with each passing day until her inevitable passing, I am consumed by an indescribable sorrow."[A10] Guilt Feelings Many caregivers experience a sense of guilt for their inability to fulfill the patient's wishes, assist in their preparations for death, or act in accordance with the patient's desires. This guilt often stems from the decision not to disclose the true nature of the situation to the patient. "I had hoped to take my spouse back to our hometown for a visit, but my spouse insisted on waiting until their condition improved. I fear that this opportunity may never come to pass in this lifetime. Even the funeral attire was prepared in secret, without seeking his opinion, leaving us uncertain of his preferred style."[A1] After enduring the prolonged and arduous journey of care-giving, many caregivers are confronted with the reality of the patient's impending death. They may initially experience a sense of relief, knowing that their most challenging times will soon be behind them. However, this relief is often swiftly followed by feelings of guilt. Influenced by traditional cultural beliefs, caregivers may feel that the very thought of letting an elderly loved one die is unacceptable, leading to the emergence of guilt. Caregivers find themselves grieving the approaching loss while simultaneously yearning for a swift end to this painful experience. "Despite the fact that the current situation is the most difficult and I am consumed by sadness, there is an underlying sense of impending relief. I tell myself to hold on, knowing that relief is just around the corner. Some may deem me unfilial, but the truth is that there are no truly filial children when faced with a prolonged sickbed vigil. My thoughts may be considered outrageous, perhaps even sinful, but I am powerless to change them."[A2] Theme 3: Desiring support Desire for Alternative Care Opportunities The majority of caregivers expressed a desire for trustworthy substitutes to provide them with respite. These patients require specialized and proficient care, which is typically undertaken by one family member on a long-term basis. Other family members are often either incapable due to inexperience or unavailable to assist. The caregivers hoped to receive professional care-giving support temporarily, allowing them to have some time to rest. "My father is getting on in years, and his health is not good. He takes more medication than my mother and is unable to provide long-term care for her. As the only child, I am the one who has to shoulder this task. If I had a brother or sister, they could have assisted me, but sadly, I don't have one. We are hoping for professional care-giving, but we can't get much help" [A10]. Timely and Effective Referral Most caregivers expressed a desire for the patient to have access to medical facilities during their last moments to assist them in overcoming their challenges. However, there is a scarcity of hospitals that offer palliative care, and the waiting time for admission is very long, which the patients may not have. "I have finally managed to contact a hospital that is willing to accept us, but we have to wait for a month. By the time a month has passed, our loved one might have already passed away, sigh..." [A8]. Ideal Symptom Management, Such as Pain Control Many caregivers expressed concern about the management of symptoms such as pain, as pain-relief medications are not easily accessible, and there is no medical care provided at home. Caregivers worried that the symptoms of pain would worsen after the patient's discharge, and they would be unable to handle it themselves. "Pain control is still manageable in the hospital, but what if it becomes uncontrollable at home? How can I adjust the dosage of painkillers, and who can I consult? Once discharged, the doctors here won't provide further care... What I worry about the most is uncontrollable pain. I can't just watch helplessly as the patient is in agony, right? I hope there's a doctor who can come to my home to provide guidance" [A13]. Obtaining Accurate End-of-Life Information Most caregivers in this study mentioned the difficulty in obtaining accurate medical information, leaving them feeling insecure. For patients in the terminal phase, their family members are eager to know when the patient will pass away and the specific cause of death, so they can prepare for the end of life. However, their doctors are often unable to provide an accurate prediction. "The doctor said there was no further treatment possible, but they couldn't predict how long my mother could live or provide a specific answer about what might happen after returning home..." [A5]. Clear Communication Caregivers often encounter communication barriers when informing elderly patients about their medical conditions. In an effort to protect the patients, caregivers worry that knowledge of the actual situation might have a psychological impact on the patients and accelerate the progression towards death. Consequently, caregivers frequently conceal the fact that the patient has cancer or that the illness has progressed to the terminal stage. Simultaneously, they request that medical staff refrain from truthfully informing the patients about their condition. "...In my dad's mind, cancer is incurable. If he knew, he would not come to the hospital for treatment. He is afraid of wasting money, so he doesn't even know what disease he has now. We have been keeping it from him and have also told the doctors and nurses not to inform him..." [A5] Another situation arises when caregivers are willing to explain the actual situation to the elderly patients, but communication is rendered impossible due to the patients' deafness or cognitive impairment. "I really wanted to tell my mother that the end is near, but she has dementia and can't communicate normally." [A4] "My spouse has poor hearing and is illiterate, so there's no way to tell her the actual situation, so we just muddle through without clarity." [A13] Discussion This study explored the complex experiences of caregivers for elderly patients with terminal cancer in northwest China, identifying three main themes: physical difficulty, psychological distress, and a strong desire for support. The findings provided a more comprehensive understanding of the challenges faced by caregivers in regions where palliative care is still in its early stages, particularly as they navigate the transition from tertiary hospital treatment to end-of-life care. Caregivers in this study had long endured the physical burden of care-giving, with their exhaustion escalating as the duration of care increased [18,19,20,21]. Elderly caregivers faced additional challenges due to frailty and comorbidities [ 22 ], while younger caregivers struggled to balance work and care-giving responsibilities, resulting in minimal rest and a heightened need for respite services [ 23 ]. The World Health Organization [ 24 ] has emphasized the importance of respite care as a crucial component of palliative care strategies, aligning with the expressed needs of the caregivers in our study. The caregivers reported a profound sense of helplessness, which was largely attributed to the ineffective referral to palliative care services and the underdevelopment of local end-of-life care infrastructure.This finding is consistent with previous Chinese research [ 25 ], which highlighted the discharge of terminal patients from tertiary hospitals due to the need to admit other cancer patients who can be treated. In contrast, the United States [ 26 ] has a complete palliative care training system, with palliative care courses integrated into the education of oncologists. When cancer enters the terminal stage, oncologists drive the referral of palliative care services, and patients are referred to appropriate places, greatly reducing the sense of helplessness experienced by patients and their families. Caregivers expressed significant uncertainty due to the lack of information from healthcare providers regarding end-of-life care, including life expectancy estimates and potential causes of death. Previous studies [ 27 ] have shown that caregivers are eager for specific information about the patient's impending death. Although Chinese oncologists excel at treatment, they often lack professional palliative care training, leaving them ill-equipped to assess end-of-life needs. A Japanese study emphasized the importance of a physician's accurate assessment of life expectancy in building trust [28]. This trust was further established through comprehensive discussions about palliative care policies, patient conditions, service locations, and end-of-life symptoms. These findings underscore the importance for healthcare providers of terminal cancer patients to be proficient in palliative care assessments to effectively support their patients. The study also found that caregivers were fearful of the patient dying at home due to concerns about inadequate control of the patient's pain and other symptoms. The stringent regulation of opioid drugs in China restricts timely access to pain relief medication, leading to sub-optimal outcomes in pain management [ 29 ]. The "Blue Book on the Development of Palliative Care in China 2019–2020" reported that 60.2% of urban residents and 78.9% of rural residents die at home, indicating a high rate of home deaths in China. This highlights an urgent need for improved pain management strategies to address caregivers' concerns and ensure better end-of-life care for patients. Caregivers in this study experienced significant anticipatory grief. Research has shown that when caregivers and patients have a shared understanding of death, the burden on caregivers is reduced [ 30 ]. Conversely, poor communication about death can lead to more intense grief [ 31 ]. These findings underscore the importance of improving communication about death to alleviate caregivers' burden and anticipatory grief. To address this issue, nurses can utilize a scale that assesses their ability to counsel caregivers on anticipatory grief [ 32 ]. Caregivers in this study reported feelings of guilt, stemming from their inability to fulfill the elderly's wishes, provide sufficient care, and the relief they felt upon the patient's imminent death. These feelings were consistent with previous research [ 33 ] and are deeply rooted in the cultural norms of Chinese society, where death is considered a taboo subject, greatly hindering communication about death and preparation for it [ 34 ]. In Chinese culture, filial piety may contribute to feelings of regret among caregivers. Research [ 35 ] suggests that, given the importance of filial piety, it is crucial to enhance mutual comfort between adult children and their terminally ill parents. Unlike in Australian studies [36], where caregivers were often invisible third parties in patient prognosis communication, Chinese family members actively participated in these discussions and made decisions on behalf of the patient. The study emphasizes the importance of open dialogue about death, which can help individuals fully accept their limitations and experience the process more naturally. Limitations The accessibility of participants posed a limitation to the study, as only caregivers of elderly patients who transitioned from the treatment phase to the end-of-life phase in oncology hospitals were interviewed. Caregivers who abandoned treatment midway were excluded from the study. Furthermore, the absence of caregiver categorization based on age or relationship may have restricted the comprehensive understanding of the specific challenges and coping strategies employed by caregivers from diverse backgrounds. Future research will focus on addressing these limitations by concentrating on family members of terminal patients who discontinue treatment and conducting a detailed classification study of caregivers. Conclusion The findings of this study highlighted the dilemma faced by caregivers, encompassing physical difficulty, psychological distress, and a desire for support. These results reinforce the evidence of the challenges encountered by caregivers in regions lacking palliative care support, emphasizing the necessity for improvements. It is crucial to develop and provide respite services, enhance death education, improve healthcare providers' communication skills regarding end-of-life information, and establish supportive home care plans. Local governments should prioritize the refinement of the palliative care system. This involves ensuring a seamless connection from top-tier hospitals to communities and homes, with the aim of meeting caregivers' expectations and assisting them in overcoming their challenges. Declarations Acknowledgments The authors would like to express their gratitude to all the individuals who participated in this study. Author Contributions Y.Y. L. was responsible for the conceptualization, data collection, analysis, and writing of the main manuscript. L.Q and L.J contributed to the data collection and analysis. L.L. Y. conducted the review and editing of the manuscript. All authors collaborated in preparing the final version of the manuscript. Data Availability The data set presented in the study is available upon request from the corresponding author during submission or after publication. The data are not publicly available due to the confidentiality of qualitative data. Ethics Approval This study was conducted in accordance with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Ningxia University of Medical Sciences (KYLL-2022-1165). The participants were asked for their consent to record the interviews, and they were assured that their information would be kept confidential. Competing Interests The authors declare no competing interests. References Sung, H., Ferlay, J., Siegel, R. L., Laversanne, M., Soerjomataram, I., Jemal, A., & Bray, F. (2021). Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: a cancer journal for clinicians, 71(3), 209-249.https://doi: 10.3322/caac.21660.Epub 2021 Feb 4 School of Library and Information Management, Emporia State University, Kansas, USA..(2020).Global Health Observatory Data Repository..Medical reference services quarterly(1),67-74. Yates, P. (2020). Cancer nursing’s potential to reduce the growing burden of cancer across the world. 2020,11, 47(6), 625-627. https://doi: 10.1188/20.ONF.625-627. Xia, C., Dong, X., Li, H., Cao, M., Sun, D., He, S., ... & Chen, W. (2022). Cancer statistics in China and United States, 2022: profiles, trends, and determinants. Chinese medical journal, 135(05), 584-590. Jinxin, Z. , Yunling, W. , Xiaoyan, L. , Yue, Q. U. , Xiangting, S. , & Yingjuan, C. , et al. (2019). The expectation of a good death from the perspective of different social roles:a literature review. Chinese Nursing Management. Uchida, M., Morita, T., Ito, Y., Koga, K., & Akechi, T. (2019). Goals of care and treatment in terminal delirium: a qualitative study of the views and experiences of healthcare professionals caring for patients with cancer. Palliative & supportive care, 17(4), 403-408. https://doi: 10.1017/S1478951518000780 Kizza, I. B., Muliira, J. K., Al Jabri, K. A., & Al-Kindi, S. N. (2024). Family caregivers of adult cancer patients in oman: predictors of caregivers’ self-efficacy for cancer pain and related symptom management at home. Cancer Nursing, 47(3), E181-E190.https://doi.org/ 10.1097/NCC.0000000000001181 Jiao,Y., Zhong F.,(2021).Effects of Empowerment Education on the Care Burden, Negative Emotions and Self-Efficacy Family Primary Caregivers of Elderly Patients with Malignant Tumors.Chinese Journal of Social Medicine.38(4),426-429.https://doi:10.3969/j.issn.1673-5625.2021.04.0179. Pang, T., Yuan, L., Wu L., Zhou, Y., ...(2023)Qualitative study on palliative care decision-making experience of family members of patients with advanced.Chin J Nurs58(13):1559-1564.https://doi:10.3761/j.issn.0254-1769.2023.13.004 HH W, Z. N., & Chen, X. Y. (2019). Qualitative study of caregiver burden and needs in hospice care patients with advanced cancer. Chin Med Ethics, 32, 1566-70.DOI:10.12026/j.issn.1001-8565.https://doi:10.12026/j.issn.1001-8565 Wu, B., Wu, L., Yuan, L., Guo, M., Peng, W., & Xia, H. (2019). Qualitative research on care experience of relative caregivers of hospice patients with oncology. J Nurs, 26(06), 6-9.https://doi:10.16460/j.issn1008-9969.2019.06.006 Xue, M., Chen, X., Zhao, H., Zhao, Y., Li, J., & Chen, W. (2022). Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study. Supportive Care in Cancer, 30(10), 8011-8018.https://doi:10.1007/s00520-022-07247-4 Song, Y., Wang, M., Zhu, M., Wang, N., He, T., Wu, X., ... & Shen, Y. (2024). Benefit finding among family caregivers of patients with advanced cancer in a palliative treatment: a qualitative study. BMC nursing, 23(1), 397.https://doi: 10.1186/s12912-024-02055-z Chelazzi, C., & Ripamonti, C. I. (2024). How early should be “Early Integrated Palliative Care”?. Supportive Care in Cancer, 32(1), 41.https://doi: 10.1007/s00520-023-08213-4 Benites, A. C., Rodin, G., Leite, A. C. A. B., Nascimento, L. C., & Dos Santos, M. A. (2021). 'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis'. European Journal of Cancer Care, 30(4), e13424.https://doi:10.1111/ecc.13424 Patra, L., Ghoshal, A., Damani, A., & Salins, N. (2024). Cancer palliative care referral: patients’ and family caregivers’ perspectives–a systematic review. BMJ Supportive & Palliative Care, 14(e1), e143-e149.https://doi: 10.1136/spcare-2022-003990 Liebzeit, D., Jaboob, S., Bjornson, S., Geiger, O., Buck, H., Arbaje, A. I., ... & Werner, N. E. (2023). A scoping review of unpaid caregivers’ experiences during older adults’ hospital-to-home transitions. Geriatric Nursing, 53, 218-226.https://doi: 10.1016/j.gerinurse.2023.08.010. Epub 2023 Aug 18 Xue, M., Chen, X., Zhao, H., Zhao, Y., Li, J., & Chen, W. (2022). Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study. Supportive Care in Cancer, 30(10), 8011-8018.https://doi: 10.1007/s00520-022-07247-4 Celik, E., Aslan, M. S., Sengul Samanci, N., Karadag, M., Saglam, T., Cakan Celik, Y., ... & Demirelli, F. H. (2022). The relationship between symptom severity and caregiver burden in cancer patients under palliative care: A cross-sectional study. Journal of Palliative Care, 37(1), 48-54.https://doi: 10.1177/08258597211045780 Ringborg, C. H., Schandl, A., Wengström, Y., & Lagergren, P. (2022). Experiences of being a family caregiver to a patient treated for oesophageal cancer—1 year after surgery. Supportive Care in Cancer, 30(1), 915-921.https://doi: 10.1007/s00520-021-06501-5 Goetze, H., Brähler, E., Gansera, L., Schnabel, A., & Köhler, N. (2014). Exhaustion and overload of family caregivers of palliative cancer patients. Psychotherapie, Psychosomatik, Medizinische Psychologie, 65(2), 66-72.https://doi: 10.1055/s-0034-1385933 Junkins, C. C., Kent, E., Litzelman, K., Bevans, M., Cannady, R. S., & Rosenberg, A. R. (2020). Cancer across the ages: a narrative review of caregiver burden for patients of all ages. Journal of Psychosocial Oncology, 38(6), 782-798.https://doi: 10.1080/07347332.2020.1796887 Nysaeter, T. M., Olsson, C., Sandsdalen, T., Hov, R., & Larsson, M. (2024). Family caregivers’ preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home–a grounded theory study. BMC Palliative Care, 23(1), 15.https://doi: 10.1186/s12904-024-01350-PMCID: PMC10782637 24.Viens, M., Éthier, A., Provencher, V., & Carrier, A. (2024). WHO, WHEN, HOW: a scoping review on flexible at-home respite for informal caregivers of older adults. BMC Health Services Research, 24(1), 767.https://doi: 10.1186/s12913-024-11058-0 Fu, F., Ng, Y. H., Wang, J., & Chui, E. W. T. (2024). Journey to inpatient hospice care: a qualitative study on the decision-making process of Chinese family caregivers of persons with terminal cancer. Patient Education and Counseling, 119, 108072.https://doi: 10.1016/j.pec.2023.108072 Hui, D., & Bruera, E. (2016). Integrating palliative care into the trajectory of cancer care. Nature reviews clinical oncology, 13(3), 159-171.https://doi: 10.1038/nrclinonc.2015.201 Al Mutair, A., Al Shaer, A., Al Ghamdi, F., & Al Ghamdi, A. (2020). The experiences of Muslim family members of critically ill patients during end-of-life care in Saudi Arabia: a qualitative phenomenological study. Clinical Nursing Research, 29(6), 375-381.https://doi: 10.1177/1054773818788969. Epub 2018 Jul 18 Murahashi, M., Tamba, K., & Takanashi, T. (2024). Bereaved Family Caregivers Perception of Trust in Palliative Care Doctors by Patients with Terminal Cancer. Journal of Social Work in End-of-Life & Palliative Care, 20(1), 65-82. https://doi: 10.1080/15524256.2023.2284668. Epub 2023 Dec 6 Zhang, Lu., Huang, H., Liu, K., Huang, Y., Xiao, Jian.(2023).Overview of management and control of opioids in China.Anti-tumor Pharmacy,13(1):17-22.https://doi: 10.3969/j.issn.2095-1264.2023.01.03 Li, C., Tang, N., Yang, L., Zeng, Q., Yu, T., Pu, X., ... & Zhang, H. (2023). Effect of caregiver burden on anticipatory grief among caregivers of elderly cancer patients: Chain mediation role of family functioning and resilience. Frontiers in Psychology, 13, 1020517.https://doi: 10.3389/fpsyg.2022.1020517 Yu, W., Lu, Q., Lu, Y., Guo, R., Hou, X., & Yang, H. (2022). Relationship between anticipatory grief and communication avoidance in Chinese caregivers of patients with advanced cancer. Cancer Nursing, 45(4), E728-E735.https://doi: 10.1097/NCC.0000000000001002 Hsiao, C. C., Hsieh, S. I., Kao, C. Y., & Chu, T. P. (2023, January). Development of a Scale of Nurses’ Competency in Anticipatory Grief Counseling for Caregivers of Patients with Terminal Cancer. In Healthcare ,11(2):264. MDPI.doi: 10.3390/healthcare11020264 Mohamed Hussin, N. A., & Mohd Sabri, N. S. (2023). A qualitative exploration of the dynamics of guilt experience in family cancer caregivers. Supportive Care in Cancer, 31(11), 659.https://doi: 10.1007/s00520-023-08060-3 Tang, Y. (2019). Caregiver burden and bereavement among family caregivers who lost terminally ill cancer patients. Palliative & Supportive Care, 17(5), 515-522. https://doi: 10.1017/S1478951518001025 Ng, W. I., Che, S. L., Li, X., & Zhu, M. (2024). Association of filial attitude, filial behavior and death literacy: implications for development of death system in Guangdong-Hong Kong-Macao Greater Bay Area of China. BMC Public Health, 24(1), 721. https://doi: 10.1186/s12889-024-18197-3. Lewis, S., Broom, A., Kenny, K., & Kirby, E. (2020). Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study. BMJ open, 10(1), e032361.https://doi: 10.1136/bmjopen-2019-032361 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 20 Feb, 2025 Read the published version in Supportive Care in Cancer → Version 1 posted Editorial decision: Revision requested 19 Dec, 2024 Reviews received at journal 19 Dec, 2024 Reviewers agreed at journal 18 Dec, 2024 Reviews received at journal 18 Dec, 2024 Reviewers agreed at journal 09 Dec, 2024 Reviewers invited by journal 09 Dec, 2024 Editor assigned by journal 09 Dec, 2024 Submission checks completed at journal 25 Oct, 2024 First submitted to journal 19 Oct, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5295000","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":370570553,"identity":"c809bb19-2ada-4e5d-bd5c-df3c4bedc767","order_by":0,"name":"Yuli Yang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAwUlEQVRIiWNgGAWjYBACAxDxoMJGjp+Z+fAD4rUknEkzlmxnSzMgXktiy6FEg/M8ChJEaTFn7zGTSGw4kGB8mAeov8YmmqAWy54zQC077uSZHeY98IDhWFpuA0GH3cgBajnzrNjsMF+CAWPDYSK03H8D1NJ2OHFzM4+BBHFabvBAtGxgJlrLmbRiC1AgSxwGBnICUX45fnjjjQ+gqOw/fPjBhxobwloYGDhMENGRQFg5CLA//kCcwlEwCkbBKBixAADZDERYGtZekwAAAABJRU5ErkJggg==","orcid":"","institution":"","correspondingAuthor":true,"prefix":"","firstName":"Yuli","middleName":"","lastName":"Yang","suffix":""},{"id":370570554,"identity":"92ff5dbf-d559-4259-93f8-d774000a53ab","order_by":1,"name":"Xiaoyan Liang","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Xiaoyan","middleName":"","lastName":"Liang","suffix":""},{"id":370570555,"identity":"aefc6606-7041-4024-8d0a-8fbd0bf56ce5","order_by":2,"name":"Qian Liu","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Qian","middleName":"","lastName":"Liu","suffix":""},{"id":370570556,"identity":"d44b7c30-eb08-407a-86fb-f3aee4e07bad","order_by":3,"name":"Jing Liu","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Jing","middleName":"","lastName":"Liu","suffix":""}],"badges":[],"createdAt":"2024-10-19 14:23:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5295000/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5295000/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00520-025-09270-7","type":"published","date":"2025-02-20T15:57:51+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":77058689,"identity":"c275a929-f2c6-4793-a46f-4b91f4bf4bf7","added_by":"auto","created_at":"2025-02-24 17:07:11","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":723321,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5295000/v1/da908381-349d-457d-bacc-cf87db6a2ca0.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Facing a Dilemma: The Experiences of Caregivers of Elderly Patients with Terminal Cancer—A Qualitative Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe incidence of cancer exhibits a positive correlation with age, rendering the elderly population particularly susceptible to this disease. Cancer has been identified as one of the primary causes of mortality among older adults [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Global cancer incidence is projected to surpass 27\u0026nbsp;million new cases annually by 2040, partly attributed to population aging and increased susceptibility to age-related diseases such as cancer [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. In China, the elderly population currently stands at approximately 170\u0026nbsp;million and is anticipated to reach 480\u0026nbsp;million by 2050. This demographic shift is expected to elevate the aging rate from 14.3\u0026ndash;34.1%. The accelerating aging process in China has led to a continuous rise in both cancer incidence and mortality rates, posing a significant threat to public health [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAs cancer patients progress to the terminal stage, the care-giving burden intensifies considerably. The terminal stage of cancer is characterized by the exhaustion of surgical and pharmacological treatment options, with an estimated survival time of 3\u0026ndash;6 months [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Despite the availability of various cancer treatments, a substantial proportion of elderly cancer patients face treatment inefficacy and enter the terminal stage. At this juncture, the cumulative effects of prior cancer treatments, complications, physical decline, multiple comorbidities, and cognitive disorders severely impact the quality of life of these elderly patients. This deterioration is particularly pronounced in the terminal stage, necessitating enhanced physiological, psychological, and social care. Consequently, caregivers of elderly terminal cancer patients are required to provide comprehensive care and support to their families [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The resources and support available to caregivers vary significantly across countries. For instance, Oman, a developed Asian nation, offers more extensive resources for patients and their families [7]. In contrast, China heavily relies on family caregivers as the primary source of social support for elderly cancer patients, resulting in a substantial care-giving burden [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePalliative care adheres to a holistic care philosophy, recognizing family members as care recipients alongside patients. In response to the challenges posed by an aging population and the high incidence of cancer, the development of palliative care has emerged as a key strategy in China. In 2017, China issued the \"Basic Standards for Palliative Care Centers (Trial)\", \"Management Standards for Palliative Care Centers (Trial)\", and \"Practice Guidelines for Palliative Care (Trial)\" to expedite the advancement of palliative care services. Economically developed regions such as Beijing, Shanghai, and Hangzhou have established palliative care guidance centers, significantly contributing to the high-quality development of palliative care. However, Ningxia, located in northwest China, faces economic challenges and lags in palliative care development. The region has yet to establish a comprehensive palliative care service system. Consequently, the majority of terminal patients are compelled to return home. In the absence of adequate palliative care support, it becomes crucial to investigate the experiences of family members in their care-giving roles. This study aims to explore how family caregivers navigate their responsibilities and challenges in providing care to elderly terminal cancer patients in a region with limited palliative care resources.\u003c/p\u003e \u003cp\u003eTo date, several studies in China have explored the experiences of family members in palliative care. These investigations have encompassed various aspects, including decision-making processes in advanced cancer treatment [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], care-giving burden and associated needs [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], care provision by relatives [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], care-giving experiences during palliative chemotherapy for lung cancer [12], and positive care-giving experiences [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. However, these studies have not specifically focused on elderly cancer patients. Early palliative care advocates for the integration of palliative services into oncology and other medical disciplines, emphasizing the importance of addressing individual needs and comprehending unique experiences of suffering [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. International literature, particularly meta-synthesis results, has revealed that family caregivers express their spirituality in multifaceted ways. This spiritual expression contributes to imbuing the care provided with meaning and prompts a reassessment of the caregivers' life perspectives and their understanding of suffering [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. The timing of palliative care referrals has been identified as a critical factor in shaping the receptiveness of both patients and their caregivers towards palliative care interventions [16]. While research has been conducted on family caregivers' experiences during the hospital-to-home transition of older adults, revealing significant stress and challenges, these studies have not specifically addressed the context of elderly cancer patients [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Consequently, a significant knowledge gap exists regarding the experiences of caregivers for elderly cancer patients during the terminal phase of palliative care, particularly in regions with limited palliative care services. This study aimed to identify the specific difficulties and challenges faced by caregivers of elderly terminal cancer patients. The objectives were to obtain effective information to establish a foundation for intervention measures, to facilitate the development of education and support programs for caregivers, and to provide valuable insights for constructing a palliative care service system tailored to elderly terminal cancer patients in economically underdeveloped areas.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e This qualitative descriptive study employed in-depth interviews to capture participants' experiences. The reporting of this study was guided by the Standards for Reporting Qualitative Research, ensuring methodological rigor and transparency.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThe study focused on caregivers of elderly terminal cancer patients who had been discharged from hospitals in Yinchuan City, Ningxia, China. The research was conducted at an oncology specialty hospital with a capacity of 500 beds and an annual inpatient volume of 9,000 visits. A purposive sampling method, incorporating maximum variation [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e], was employed to select participants between March 1 and October 30, 2023. This approach ensured diversity in characteristics such as sex, age, education level, beliefs, and length of care experience. The inclusion criteria for this study were defined as follows: (a) Caregivers must be 65 years of age or older and possess the ability to communicate fluently in Mandarin. (b) A minimum care-giving duration of two years was required. (c) Participants were expected to have some understanding of palliative care concepts. (d) Willingness to participate in the interview process was essential. Exclusion criteria were established as: (a) Poor health conditions that would impede participation in interviews. (b) Inability to comprehend or respond to questions effectively. Participant enrollment continued until data saturation was achieved, which is considered the gold standard for determining sample size in qualitative research. Data saturation was deemed to have occurred when new interviews ceased to provide additional novel information. A final sample of 13 cases was included in the study(see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eGeneral Information of the Study Subjects (n\u0026thinsp;=\u0026thinsp;13)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"10\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c10\" colnum=\"10\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eID\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCaregiver\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCaregiver\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eRelationship\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCaregiver\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eCare-giving Duration\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003ePatient\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003ePatient\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003ePatient\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c10\"\u003e \u003cp\u003ePatient\u0026rsquo;s\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSex\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eJob\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDisease\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003eSex\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c10\"\u003e \u003cp\u003eJob\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e8 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBreast Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eEmployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eLung Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e78\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003efarmer\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDaughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eworker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e2 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCervical Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e56\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDaughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eLung Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e53\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eEmployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eStomach Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e83\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003efarmer\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e6 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOvarian Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e42\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eEmployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e7 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBladder Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e4 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRectal Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eTeacher\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eBladder Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e77\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDaughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eEmployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e2 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eOvarian Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e68\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ehousekeeper\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e4 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eStomach Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e73\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e2 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eProstate Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e76\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e73\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eRetried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e4 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eLung Cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eHousekeeper\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003eA semi-structured interview protocol with open-ended questions was developed by the primary investigator (Y.Y.L) based on a comprehensive literature review. The protocol was subsequently refined through collaborative discussions among research team members. To ensure the efficacy of the interview questions, a pilot test was conducted with three participants who were not included in the final study. Minor revisions were implemented by two researchers (LQ, LXY) who possessed extensive experience in qualitative interview techniques and had completed formal training in qualitative research methods, including advanced interview techniques. The final interview guide comprised the following key questions: (1) How would you describe your overall experience of caring for an elderly patient with terminal cancer? (2) What are the most significant challenges you have encountered during the care-giving process? (3) What specific forms of support or assistance do you believe would be most beneficial to you in your role as a caregiver?\u003c/p\u003e \u003cp\u003eY.Y.L, a Palliative Care Specialist Nurse with substantial clinical experience working with elderly terminal cancer patients and their families, conducted the interviews. The researcher's background facilitated the establishment of trust with the participants. To encourage detailed descriptions of participants' experiences, follow-up questions were employed, such as \"How did that experience impact you?\", \"What transpired subsequently?\", and \"What were your thoughts at that moment?\"\u003c/p\u003e \u003cp\u003e Prior to each interview, the study's objectives were thoroughly explained to the participants, and strict confidentiality of all conversations was assured. The primary investigator (Y.Y.L) briefed participants about the study and informed them of their right to withdraw from participation at any time. Upon obtaining verbal agreement, participants provided written informed consent. All interviews were audio-recorded and supplemented with field notes. The primary researcher maintained a neutral stance throughout the interviews, avoiding leading questions and employing effective conversational techniques such as active listening, probing questions, and reflective summarization.\u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eColaizzi's 7-step analysis, a systematic approach commonly employed in phenomenological studies to analyze and comprehend participant experiences, was utilized in this study. The seven phases encompass: familiarization with the data, extraction of meaningful perspectives, generation of initial codes, clustering, detailed description, definition and naming of themes, and participant verification. The interviews were audio-recorded and transcribed verbatim by the first author (YYL) within 24 hours, with the transcripts being double-checked by the second author (YQ). Three researchers (YYL, LQ, and LXY) independently read the transcripts line by line and proceeded with data analysis by independently coding the data extracts from all interviews. This process involved writing notes and codes in the margins of the extracts. Several meetings were held among the authors to discuss and reach a consensus on the coding. Based on the coding, an initial thematic map was created to form themes. Across the data set, all authors identified a sense of significance and relationships between the different themes. These themes were discussed, reviewed, and defined until agreement was reached. Ultimately, one main theme and six sub-themes reflecting the content of the interviews were developed.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eAfter conducting 13 interviews, data saturation was reached, indicating that the gathered information was sufficient to provide a comprehensive description of the topic. The demographic characteristics of the participants are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Through the data analysis process, three main themes were identified: Physical Difficulty, Psychological Distress, and Desiring Support.\u003c/p\u003e\n\u003ch3\u003eTheme 1: Physical Difficulty\u003c/h3\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eIncreased Frailty and Comorbidities\u003c/h2\u003e \u003cp\u003eThe majority of caregivers reported experiencing extreme physical exhaustion due to the long-term illnesses and extensive care requirements of elderly cancer patients. Caregivers of different identities faced unique challenges. Elderly spouses, who were also growing weaker and more susceptible to illness, struggled with the physical strain of care-giving. Children who served as caregivers often had to take leave from their demanding work schedules, contributing to their physical exhaustion.\u003c/p\u003e \u003cp\u003e\"My spouse already has diabetes and hypertension, and with cancer on top of that, it's like adding insult to injury. I also have diabetes and hypertension, and I can't stand the physical strain. When will it end...\".[ A1]\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eChronic care-giving Exhaustion\u003c/h3\u003e\n\u003cp\u003eElderly cancer patients require round-the-clock companionship during hospitalization, and the care-giving tasks are highly intricate. Prolonged, repetitive care-giving leads to caregiver muscle fatigue, back pain, and other physical discomforts, including sleep deprivation and poor appetite.\u003c/p\u003e \u003cp\u003e\"... I take care of my father by washing him up, serving meals, buying medicine, and monitoring her intravenous fluids during the day. At night, I also have to help her turn over and assist her with going to the bathroom. I can't even enjoy my meals or get a good night's sleep...\".[ A4]\u003c/p\u003e\n\u003ch3\u003eTheme 2: Psychological Distress\u003c/h3\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eA Profound Sense of Helplessness\u003c/h2\u003e \u003cp\u003eThe vast majority of caregivers expressed a profound sense of helplessness, with the assistance they receive being severely limited. Major hospitals that frequently administer chemotherapy prioritize beds for patients who can continue their treatments, and terminal patients are no longer considered part of that system; they are required to be discharged. Upon discharge, there is a scarcity of hospitals available for admission, leading to an overwhelming feeling of helplessness.\u003c/p\u003e \u003cp\u003e\"...After trying all options, no hospital is willing to continue treating us; we have no choice but to go home and wait for death...\".[ A1]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eA Strong Sense of Uncertainty\u003c/h2\u003e \u003cp\u003eMost caregivers in this study experienced a strong sense of uncertainty. They are unaware of when the patient will pass away, what types of painful symptoms will manifest, or what resources are available to assist them. This uncertainty about the future contributes to their psychological distress.\u003c/p\u003e \u003cp\u003e\"I don't know how long my spouse will live, how much longer she will suffer, what kind of painful symptoms will appear after we return home. I've heard about severe pain, coughing up blood, shortness of breath, vomiting blood, and other symptoms, and I don't know how to cope...\".[ A6]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eFear of Home Death\u003c/h2\u003e \u003cp\u003eMany caregivers experience panic at the prospect of the patient passing away at home and express a preference for the patient to die in the hospital setting. This fear is driven by several factors. Firstly, caregivers are concerned that the patient will endure greater suffering and pain if they remain at home. Secondly, they harbor doubts about their family's ability to cope with the physical, mental, and practical challenges associated with a home death. Thirdly, influenced by societal perceptions, caregivers worry about being judged as disrespectful to the patient and fear that a house where a death has occurred will prove difficult to sell in the future.\u003c/p\u003e \u003cp\u003e\"I dread the potential gossip that may arise if my spouse were to pass away at home, with people suggesting that we failed to provide proper care. The ideal scenario would be for her to pass away in the hospital setting. My primary concern is the unpredictable situations that we may be ill-equipped to handle. Additionally, I worry about the psychological trauma it could inflict upon the children. As I am also advancing in age, I fear that I may lack the physical and mental capacity to manage the various challenges that may arise at home.\"[A6]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003ePronounced Anticipatory Grief\u003c/h2\u003e \u003cp\u003eMany caregivers have come to accept the reality of the elderly patient's impending death, and anticipatory grief is a prominent feature of their experience. The elderly patients have made immense contributions to the family unit, often serving as the backbone of the household. As caregivers witness their loved one's gradual decline and approach towards death, they are overcome by a profound sense of sadness.\u003c/p\u003e \u003cp\u003e\"My mother has been the pillar of our family and has made immeasurable contributions to our home. She has always been the one to worry about every detail, big and small. However, since her cancer diagnosis two years ago, her sense of loss has become particularly pronounced. Throughout her life, she has been a beacon of strength, but now, as she grows weaker with each passing day until her inevitable passing, I am consumed by an indescribable sorrow.\"[A10]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eGuilt Feelings\u003c/h2\u003e \u003cp\u003eMany caregivers experience a sense of guilt for their inability to fulfill the patient's wishes, assist in their preparations for death, or act in accordance with the patient's desires. This guilt often stems from the decision not to disclose the true nature of the situation to the patient.\u003c/p\u003e \u003cp\u003e\"I had hoped to take my spouse back to our hometown for a visit, but my spouse insisted on waiting until their condition improved. I fear that this opportunity may never come to pass in this lifetime. Even the funeral attire was prepared in secret, without seeking his opinion, leaving us uncertain of his preferred style.\"[A1]\u003c/p\u003e \u003cp\u003eAfter enduring the prolonged and arduous journey of care-giving, many caregivers are confronted with the reality of the patient's impending death. They may initially experience a sense of relief, knowing that their most challenging times will soon be behind them. However, this relief is often swiftly followed by feelings of guilt. Influenced by traditional cultural beliefs, caregivers may feel that the very thought of letting an elderly loved one die is unacceptable, leading to the emergence of guilt. Caregivers find themselves grieving the approaching loss while simultaneously yearning for a swift end to this painful experience.\u003c/p\u003e \u003cp\u003e\"Despite the fact that the current situation is the most difficult and I am consumed by sadness, there is an underlying sense of impending relief. I tell myself to hold on, knowing that relief is just around the corner. Some may deem me unfilial, but the truth is that there are no truly filial children when faced with a prolonged sickbed vigil. My thoughts may be considered outrageous, perhaps even sinful, but I am powerless to change them.\"[A2]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Desiring support\u003c/h2\u003e \u003cdiv id=\"Sec17\" class=\"Section3\"\u003e \u003ch2\u003eDesire for Alternative Care Opportunities\u003c/h2\u003e \u003cp\u003eThe majority of caregivers expressed a desire for trustworthy substitutes to provide them with respite. These patients require specialized and proficient care, which is typically undertaken by one family member on a long-term basis. Other family members are often either incapable due to inexperience or unavailable to assist. The caregivers hoped to receive professional care-giving support temporarily, allowing them to have some time to rest.\u003c/p\u003e \u003cp\u003e\"My father is getting on in years, and his health is not good. He takes more medication than my mother and is unable to provide long-term care for her. As the only child, I am the one who has to shoulder this task. If I had a brother or sister, they could have assisted me, but sadly, I don't have one. We are hoping for professional care-giving, but we can't get much help\" [A10].\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eTimely and Effective Referral\u003c/h2\u003e \u003cp\u003eMost caregivers expressed a desire for the patient to have access to medical facilities during their last moments to assist them in overcoming their challenges. However, there is a scarcity of hospitals that offer palliative care, and the waiting time for admission is very long, which the patients may not have. \"I have finally managed to contact a hospital that is willing to accept us, but we have to wait for a month. By the time a month has passed, our loved one might have already passed away, sigh...\" [A8].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eIdeal Symptom Management, Such as Pain Control\u003c/h2\u003e \u003cp\u003eMany caregivers expressed concern about the management of symptoms such as pain, as pain-relief medications are not easily accessible, and there is no medical care provided at home. Caregivers worried that the symptoms of pain would worsen after the patient's discharge, and they would be unable to handle it themselves.\u003c/p\u003e \u003cp\u003e\"Pain control is still manageable in the hospital, but what if it becomes uncontrollable at home? How can I adjust the dosage of painkillers, and who can I consult? Once discharged, the doctors here won't provide further care... What I worry about the most is uncontrollable pain. I can't just watch helplessly as the patient is in agony, right? I hope there's a doctor who can come to my home to provide guidance\" [A13].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eObtaining Accurate End-of-Life Information\u003c/h2\u003e \u003cp\u003eMost caregivers in this study mentioned the difficulty in obtaining accurate medical information, leaving them feeling insecure. For patients in the terminal phase, their family members are eager to know when the patient will pass away and the specific cause of death, so they can prepare for the end of life. However, their doctors are often unable to provide an accurate prediction.\u003c/p\u003e \u003cp\u003e\"The doctor said there was no further treatment possible, but they couldn't predict how long my mother could live or provide a specific answer about what might happen after returning home...\" [A5].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eClear Communication\u003c/h2\u003e \u003cp\u003eCaregivers often encounter communication barriers when informing elderly patients about their medical conditions. In an effort to protect the patients, caregivers worry that knowledge of the actual situation might have a psychological impact on the patients and accelerate the progression towards death. Consequently, caregivers frequently conceal the fact that the patient has cancer or that the illness has progressed to the terminal stage. Simultaneously, they request that medical staff refrain from truthfully informing the patients about their condition.\u003c/p\u003e \u003cp\u003e\"...In my dad's mind, cancer is incurable. If he knew, he would not come to the hospital for treatment. He is afraid of wasting money, so he doesn't even know what disease he has now. We have been keeping it from him and have also told the doctors and nurses not to inform him...\" [A5]\u003c/p\u003e \u003cp\u003eAnother situation arises when caregivers are willing to explain the actual situation to the elderly patients, but communication is rendered impossible due to the patients' deafness or cognitive impairment.\u003c/p\u003e \u003cp\u003e\"I really wanted to tell my mother that the end is near, but she has dementia and can't communicate normally.\" [A4]\u003c/p\u003e \u003cp\u003e\"My spouse has poor hearing and is illiterate, so there's no way to tell her the actual situation, so we just muddle through without clarity.\" [A13]\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explored the complex experiences of caregivers for elderly patients with terminal cancer in northwest China, identifying three main themes: physical difficulty, psychological distress, and a strong desire for support. The findings provided a more comprehensive understanding of the challenges faced by caregivers in regions where palliative care is still in its early stages, particularly as they navigate the transition from tertiary hospital treatment to end-of-life care.\u003c/p\u003e \u003cp\u003eCaregivers in this study had long endured the physical burden of care-giving, with their exhaustion escalating as the duration of care increased [18,19,20,21]. Elderly caregivers faced additional challenges due to frailty and comorbidities [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e], while younger caregivers struggled to balance work and care-giving responsibilities, resulting in minimal rest and a heightened need for respite services [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. The World Health Organization [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e] has emphasized the importance of respite care as a crucial component of palliative care strategies, aligning with the expressed needs of the caregivers in our study.\u003c/p\u003e \u003cp\u003eThe caregivers reported a profound sense of helplessness, which was largely attributed to the ineffective referral to palliative care services and the underdevelopment of local end-of-life care infrastructure.This finding is consistent with previous Chinese research [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], which highlighted the discharge of terminal patients from tertiary hospitals due to the need to admit other cancer patients who can be treated. In contrast, the United States [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e] has a complete palliative care training system, with palliative care courses integrated into the education of oncologists. When cancer enters the terminal stage, oncologists drive the referral of palliative care services, and patients are referred to appropriate places, greatly reducing the sense of helplessness experienced by patients and their families.\u003c/p\u003e \u003cp\u003eCaregivers expressed significant uncertainty due to the lack of information from healthcare providers regarding end-of-life care, including life expectancy estimates and potential causes of death. Previous studies [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e] have shown that caregivers are eager for specific information about the patient's impending death. Although Chinese oncologists excel at treatment, they often lack professional palliative care training, leaving them ill-equipped to assess end-of-life needs. A Japanese study emphasized the importance of a physician's accurate assessment of life expectancy in building trust [28]. This trust was further established through comprehensive discussions about palliative care policies, patient conditions, service locations, and end-of-life symptoms. These findings underscore the importance for healthcare providers of terminal cancer patients to be proficient in palliative care assessments to effectively support their patients.\u003c/p\u003e \u003cp\u003eThe study also found that caregivers were fearful of the patient dying at home due to concerns about inadequate control of the patient's pain and other symptoms. The stringent regulation of opioid drugs in China restricts timely access to pain relief medication, leading to sub-optimal outcomes in pain management [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. The \"Blue Book on the Development of Palliative Care in China 2019\u0026ndash;2020\" reported that 60.2% of urban residents and 78.9% of rural residents die at home, indicating a high rate of home deaths in China. This highlights an urgent need for improved pain management strategies to address caregivers' concerns and ensure better end-of-life care for patients.\u003c/p\u003e \u003cp\u003eCaregivers in this study experienced significant anticipatory grief. Research has shown that when caregivers and patients have a shared understanding of death, the burden on caregivers is reduced [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Conversely, poor communication about death can lead to more intense grief [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. These findings underscore the importance of improving communication about death to alleviate caregivers' burden and anticipatory grief. To address this issue, nurses can utilize a scale that assesses their ability to counsel caregivers on anticipatory grief [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCaregivers in this study reported feelings of guilt, stemming from their inability to fulfill the elderly's wishes, provide sufficient care, and the relief they felt upon the patient's imminent death. These feelings were consistent with previous research [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e] and are deeply rooted in the cultural norms of Chinese society, where death is considered a taboo subject, greatly hindering communication about death and preparation for it [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. In Chinese culture, filial piety may contribute to feelings of regret among caregivers. Research [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e] suggests that, given the importance of filial piety, it is crucial to enhance mutual comfort between adult children and their terminally ill parents. Unlike in Australian studies [36], where caregivers were often invisible third parties in patient prognosis communication, Chinese family members actively participated in these discussions and made decisions on behalf of the patient. The study emphasizes the importance of open dialogue about death, which can help individuals fully accept their limitations and experience the process more naturally.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThe accessibility of participants posed a limitation to the study, as only caregivers of elderly patients who transitioned from the treatment phase to the end-of-life phase in oncology hospitals were interviewed. Caregivers who abandoned treatment midway were excluded from the study. Furthermore, the absence of caregiver categorization based on age or relationship may have restricted the comprehensive understanding of the specific challenges and coping strategies employed by caregivers from diverse backgrounds. Future research will focus on addressing these limitations by concentrating on family members of terminal patients who discontinue treatment and conducting a detailed classification study of caregivers.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe findings of this study highlighted the dilemma faced by caregivers, encompassing physical difficulty, psychological distress, and a desire for support. These results reinforce the evidence of the challenges encountered by caregivers in regions lacking palliative care support, emphasizing the necessity for improvements. It is crucial to develop and provide respite services, enhance death education, improve healthcare providers' communication skills regarding end-of-life information, and establish supportive home care plans. Local governments should prioritize the refinement of the palliative care system. This involves ensuring a seamless connection from top-tier hospitals to communities and homes, with the aim of meeting caregivers' expectations and assisting them in overcoming their challenges.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e The authors would like to express their gratitude to all the individuals who participated in this study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u0026nbsp;\u003c/strong\u003eY.Y. L. was responsible for the conceptualization, data collection, analysis, and writing of the main manuscript. L.Q and L.J contributed to the data collection and analysis. L.L. Y. conducted the review and editing of the manuscript. All authors collaborated in preparing the final version of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability\u0026nbsp;\u003c/strong\u003eThe data set presented in the study is available upon request from the corresponding author during submission or after publication. The data are not publicly available due to the confidentiality of qualitative data.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEthics Approval This study was conducted in accordance with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Ningxia University of Medical Sciences (KYLL-2022-1165). The participants were asked for their consent to record the interviews, and they were assured that their information would be kept confidential.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u0026nbsp;\u003c/strong\u003eThe authors declare no competing interests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eSung, H., Ferlay, J., Siegel, R. L., Laversanne, M., Soerjomataram, I., Jemal, A., \u0026amp; Bray, F. (2021). Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: a cancer journal for clinicians, 71(3), 209-249.https://doi: 10.3322/caac.21660.Epub 2021 Feb 4\u003c/li\u003e\n\u003cli\u003eSchool of Library and Information Management, Emporia State University, Kansas, USA..(2020).Global Health Observatory Data Repository..Medical reference services quarterly(1),67-74.\u003c/li\u003e\n\u003cli\u003eYates, P. (2020). Cancer nursing\u0026rsquo;s potential to reduce the growing burden of cancer across the world. 2020,11, 47(6), 625-627. https://doi: 10.1188/20.ONF.625-627. \u003c/li\u003e\n\u003cli\u003eXia, C., Dong, X., Li, H., Cao, M., Sun, D., He, S., ... \u0026amp; Chen, W. (2022). Cancer statistics in China and United States, 2022: profiles, trends, and determinants. Chinese medical journal, 135(05), 584-590.\u003c/li\u003e\n\u003cli\u003eJinxin, Z. , Yunling, W. , Xiaoyan, L. , Yue, Q. U. , Xiangting, S. , \u0026amp; Yingjuan, C. , et al. (2019). The expectation of a good death from the perspective of different social roles:a literature review. Chinese Nursing Management.\u003c/li\u003e\n\u003cli\u003eUchida, M., Morita, T., Ito, Y., Koga, K., \u0026amp; Akechi, T. (2019). Goals of care and treatment in terminal delirium: a qualitative study of the views and experiences of healthcare professionals caring for patients with cancer. Palliative \u0026amp; supportive care, 17(4), 403-408. https://doi: 10.1017/S1478951518000780\u003c/li\u003e\n\u003cli\u003eKizza, I. B., Muliira, J. K., Al Jabri, K. A., \u0026amp; Al-Kindi, S. N. (2024). Family caregivers of adult cancer patients in oman: predictors of caregivers\u0026rsquo; self-efficacy for cancer pain and related symptom management at home. Cancer Nursing, 47(3), E181-E190.https://doi.org/ 10.1097/NCC.0000000000001181\u003c/li\u003e\n\u003cli\u003eJiao,Y., Zhong F.,(2021).Effects of Empowerment Education on the Care Burden, Negative Emotions and Self-Efficacy Family Primary Caregivers of Elderly Patients with Malignant Tumors.Chinese Journal of Social Medicine.38(4),426-429.https://doi:10.3969/j.issn.1673-5625.2021.04.0179. \u003c/li\u003e\n\u003cli\u003ePang, T., Yuan, L., Wu L., Zhou, Y., ...(2023)Qualitative study on palliative care decision-making experience of family members of patients with advanced.Chin J Nurs58(13):1559-1564.https://doi:10.3761/j.issn.0254-1769.2023.13.004\u003c/li\u003e\n\u003cli\u003eHH W, Z. N., \u0026amp; Chen, X. Y. (2019). Qualitative study of caregiver burden and needs in hospice care patients with advanced cancer. Chin Med Ethics, 32, 1566-70.DOI:10.12026/j.issn.1001-8565.https://doi:10.12026/j.issn.1001-8565\u003c/li\u003e\n\u003cli\u003eWu, B., Wu, L., Yuan, L., Guo, M., Peng, W., \u0026amp; Xia, H. (2019). Qualitative research on care experience of relative caregivers of hospice patients with oncology. J Nurs, 26(06), 6-9.https://doi:10.16460/j.issn1008-9969.2019.06.006\u003c/li\u003e\n\u003cli\u003eXue, M., Chen, X., Zhao, H., Zhao, Y., Li, J., \u0026amp; Chen, W. (2022). Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study. Supportive Care in Cancer, 30(10), 8011-8018.https://doi:10.1007/s00520-022-07247-4\u003c/li\u003e\n\u003cli\u003eSong, Y., Wang, M., Zhu, M., Wang, N., He, T., Wu, X., ... \u0026amp; Shen, Y. (2024). Benefit finding among family caregivers of patients with advanced cancer in a palliative treatment: a qualitative study. BMC nursing, 23(1), 397.https://doi: 10.1186/s12912-024-02055-z\u003c/li\u003e\n\u003cli\u003eChelazzi, C., \u0026amp; Ripamonti, C. I. (2024). How early should be \u0026ldquo;Early Integrated Palliative Care\u0026rdquo;?. Supportive Care in Cancer, 32(1), 41.https://doi: 10.1007/s00520-023-08213-4\u003c/li\u003e\n\u003cli\u003eBenites, A. C., Rodin, G., Leite, A. C. A. B., Nascimento, L. C., \u0026amp; Dos Santos, M. A. (2021). \u0026apos;The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis\u0026apos;. European Journal of Cancer Care, 30(4), e13424.https://doi:10.1111/ecc.13424\u003c/li\u003e\n\u003cli\u003ePatra, L., Ghoshal, A., Damani, A., \u0026amp; Salins, N. (2024). Cancer palliative care referral: patients\u0026rsquo; and family caregivers\u0026rsquo; perspectives\u0026ndash;a systematic review. BMJ Supportive \u0026amp; Palliative Care, 14(e1), e143-e149.https://doi: 10.1136/spcare-2022-003990\u003c/li\u003e\n\u003cli\u003eLiebzeit, D., Jaboob, S., Bjornson, S., Geiger, O., Buck, H., Arbaje, A. I., ... \u0026amp; Werner, N. E. (2023). A scoping review of unpaid caregivers\u0026rsquo; experiences during older adults\u0026rsquo; hospital-to-home transitions. Geriatric Nursing, 53, 218-226.https://doi: 10.1016/j.gerinurse.2023.08.010. Epub 2023 Aug 18\u003c/li\u003e\n\u003cli\u003eXue, M., Chen, X., Zhao, H., Zhao, Y., Li, J., \u0026amp; Chen, W. (2022). Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study. Supportive Care in Cancer, 30(10), 8011-8018.https://doi: 10.1007/s00520-022-07247-4\u003c/li\u003e\n\u003cli\u003eCelik, E., Aslan, M. S., Sengul Samanci, N., Karadag, M., Saglam, T., Cakan Celik, Y., ... \u0026amp; Demirelli, F. H. (2022). The relationship between symptom severity and caregiver burden in cancer patients under palliative care: A cross-sectional study. Journal of Palliative Care, 37(1), 48-54.https://doi: 10.1177/08258597211045780\u003c/li\u003e\n\u003cli\u003eRingborg, C. H., Schandl, A., Wengstr\u0026ouml;m, Y., \u0026amp; Lagergren, P. (2022). Experiences of being a family caregiver to a patient treated for oesophageal cancer\u0026mdash;1 year after surgery. Supportive Care in Cancer, 30(1), 915-921.https://doi: 10.1007/s00520-021-06501-5\u003c/li\u003e\n\u003cli\u003eGoetze, H., Br\u0026auml;hler, E., Gansera, L., Schnabel, A., \u0026amp; K\u0026ouml;hler, N. (2014). Exhaustion and overload of family caregivers of palliative cancer patients. Psychotherapie, Psychosomatik, Medizinische Psychologie, 65(2), 66-72.https://doi: 10.1055/s-0034-1385933\u003c/li\u003e\n\u003cli\u003eJunkins, C. C., Kent, E., Litzelman, K., Bevans, M., Cannady, R. S., \u0026amp; Rosenberg, A. R. (2020). Cancer across the ages: a narrative review of caregiver burden for patients of all ages. Journal of Psychosocial Oncology, 38(6), 782-798.https://doi: 10.1080/07347332.2020.1796887\u003c/li\u003e\n\u003cli\u003eNysaeter, T. M., Olsson, C., Sandsdalen, T., Hov, R., \u0026amp; Larsson, M. (2024). Family caregivers\u0026rsquo; preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home\u0026ndash;a grounded theory study. BMC Palliative Care, 23(1), 15.https://doi: 10.1186/s12904-024-01350-PMCID: PMC10782637\u003c/li\u003e\n\u003cli\u003e24.Viens, M., \u0026Eacute;thier, A., Provencher, V., \u0026amp; Carrier, A. (2024). WHO, WHEN, HOW: a scoping review on flexible at-home respite for informal caregivers of older adults. BMC Health Services Research, 24(1), 767.https://doi: 10.1186/s12913-024-11058-0\u003c/li\u003e\n\u003cli\u003eFu, F., Ng, Y. H., Wang, J., \u0026amp; Chui, E. W. T. (2024). Journey to inpatient hospice care: a qualitative study on the decision-making process of Chinese family caregivers of persons with terminal cancer. Patient Education and Counseling, 119, 108072.https://doi: 10.1016/j.pec.2023.108072\u003c/li\u003e\n\u003cli\u003eHui, D., \u0026amp; Bruera, E. (2016). Integrating palliative care into the trajectory of cancer care. Nature reviews clinical oncology, 13(3), 159-171.https://doi: 10.1038/nrclinonc.2015.201\u003c/li\u003e\n\u003cli\u003eAl Mutair, A., Al Shaer, A., Al Ghamdi, F., \u0026amp; Al Ghamdi, A. (2020). The experiences of Muslim family members of critically ill patients during end-of-life care in Saudi Arabia: a qualitative phenomenological study. Clinical Nursing Research, 29(6), 375-381.https://doi: 10.1177/1054773818788969. Epub 2018 Jul 18\u003c/li\u003e\n\u003cli\u003eMurahashi, M., Tamba, K., \u0026amp; Takanashi, T. (2024). Bereaved Family Caregivers Perception of Trust in Palliative Care Doctors by Patients with Terminal Cancer. Journal of Social Work in End-of-Life \u0026amp; Palliative Care, 20(1), 65-82. https://doi: 10.1080/15524256.2023.2284668. Epub 2023 Dec 6\u003c/li\u003e\n\u003cli\u003eZhang, Lu., Huang, H., Liu, K., Huang, Y., Xiao, Jian.(2023).Overview of management and control of opioids in China.Anti-tumor Pharmacy,13(1):17-22.https://doi: 10.3969/j.issn.2095-1264.2023.01.03\u003c/li\u003e\n\u003cli\u003eLi, C., Tang, N., Yang, L., Zeng, Q., Yu, T., Pu, X., ... \u0026amp; Zhang, H. (2023). Effect of caregiver burden on anticipatory grief among caregivers of elderly cancer patients: Chain mediation role of family functioning and resilience. Frontiers in Psychology, 13, 1020517.https://doi: 10.3389/fpsyg.2022.1020517\u003c/li\u003e\n\u003cli\u003eYu, W., Lu, Q., Lu, Y., Guo, R., Hou, X., \u0026amp; Yang, H. (2022). Relationship between anticipatory grief and communication avoidance in Chinese caregivers of patients with advanced cancer. Cancer Nursing, 45(4), E728-E735.https://doi: 10.1097/NCC.0000000000001002\u003c/li\u003e\n\u003cli\u003eHsiao, C. C., Hsieh, S. I., Kao, C. Y., \u0026amp; Chu, T. P. (2023, January). Development of a Scale of Nurses\u0026rsquo; Competency in Anticipatory Grief Counseling for Caregivers of Patients with Terminal Cancer. In Healthcare ,11(2):264. MDPI.doi: 10.3390/healthcare11020264\u003c/li\u003e\n\u003cli\u003eMohamed Hussin, N. A., \u0026amp; Mohd Sabri, N. S. (2023). A qualitative exploration of the dynamics of guilt experience in family cancer caregivers. Supportive Care in Cancer, 31(11), 659.https://doi: 10.1007/s00520-023-08060-3\u003c/li\u003e\n\u003cli\u003eTang, Y. (2019). Caregiver burden and bereavement among family caregivers who lost terminally ill cancer patients. Palliative \u0026amp; Supportive Care, 17(5), 515-522. https://doi: 10.1017/S1478951518001025\u003c/li\u003e\n\u003cli\u003eNg, W. I., Che, S. L., Li, X., \u0026amp; Zhu, M. (2024). Association of filial attitude, filial behavior and death literacy: implications for development of death system in Guangdong-Hong Kong-Macao Greater Bay Area of China. BMC Public Health, 24(1), 721. https://doi: 10.1186/s12889-024-18197-3.\u003c/li\u003e\n\u003cli\u003eLewis, S., Broom, A., Kenny, K., \u0026amp; Kirby, E. (2020). Cancer caregivers\u0026rsquo; experiences of prognosis in Australia: a qualitative interview study. BMJ open, 10(1), e032361.https://doi: 10.1136/bmjopen-2019-032361\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Caregivers, Dilemma, Experiences, Elderly Cancer Patients, Terminal Illness","lastPublishedDoi":"10.21203/rs.3.rs-5295000/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5295000/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003ePurpose:\u003c/strong\u003eFamily members predominantly serve as the primary caregivers for cancer patients. However, the experiences of caregivers in regions lacking palliative care support have not been thoroughly investigated, particularly when elderly cancer patients enter the terminal phase. This study aims to explore the experiences of caregivers for elderly cancer patients in the terminal stage, focusing on areas with limited palliative care resources.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003eA qualitative study was conducted from March to October 2023. Face-to-face, in-depth, semi-structured interviews were employed to collect data from 13 Chinese family caregivers of elderly terminal cancer patients. Participants were recruited using purposive sampling. The interview data were analyzed using Colaizzi's seven-step analysis method. The study's rigor was ensured through the application of Lincoln and Guba's criteria.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e[Three main themes and 11 sub-themes were identified through data analysis: (1)Physical difficulty,(2)Psychological distress, and(3) Desiring support .]\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion: \u003c/strong\u003eThe development and provision of respite services, enhancement of death education, improvement of physicians' communication skills regarding end-of-life information, and establishment of supportive home care plans are deemed necessary. It is recommended that local governments refine the palliative care system, ensuring seamless integration of palliative care from top-tier hospitals to communities and homes. These measures aim to meet caregivers' expectations while assisting them in overcoming their challenges.\u003c/p\u003e","manuscriptTitle":"Facing a Dilemma: The Experiences of Caregivers of Elderly Patients with Terminal Cancer—A Qualitative Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-06 12:43:42","doi":"10.21203/rs.3.rs-5295000/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-12-19T13:05:07+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-12-19T10:55:56+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"277365444667518255923199212384720759226","date":"2024-12-19T03:36:20+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-12-18T10:29:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"240254240185908173710524832551127495269","date":"2024-12-09T16:59:24+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-12-09T16:38:14+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-12-09T16:36:19+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-10-26T00:08:12+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2024-10-19T14:19:15+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"cc392930-bf21-4f20-a3e3-8149f2e45f73","owner":[],"postedDate":"November 6th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-02-24T16:59:07+00:00","versionOfRecord":{"articleIdentity":"rs-5295000","link":"https://doi.org/10.1007/s00520-025-09270-7","journal":{"identity":"supportive-care-in-cancer","isVorOnly":false,"title":"Supportive Care in Cancer"},"publishedOn":"2025-02-20 15:57:51","publishedOnDateReadable":"February 20th, 2025"},"versionCreatedAt":"2024-11-06 12:43:42","video":"","vorDoi":"10.1007/s00520-025-09270-7","vorDoiUrl":"https://doi.org/10.1007/s00520-025-09270-7","workflowStages":[]},"version":"v1","identity":"rs-5295000","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5295000","identity":"rs-5295000","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}
Text is read by the "Ask this paper" AI Q&A widget below.
Extraction quality varies by source — PMC NXML preserves structure
cleanly, OA-HTML may include some navigation residue, and OA-PDF can
have broken hyphenation. The publisher copy
(via DOI)
is the canonical version.