Exploring the Lived Experience of Chinese Family Caregivers Caring for End-Of-Life Cancer Patients at Home: A Phenomenological Study in Singapore

Exploring the Lived Experience of Chinese Family Caregivers Caring for End-Of-Life Cancer Patients at Home: A Phenomenological Study in Singapore | 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 Exploring the Lived Experience of Chinese Family Caregivers Caring for End-Of-Life Cancer Patients at Home: A Phenomenological Study in Singapore Seng Hock Martin Ang, Wing Hong Edward Poon, Odette Best, Coralie Graham This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4934422/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Purpose The Chinese community constitutes the largest demographic and faces the highest rates of cancer incidence in Singapore. Given this, palliative care plays a crucial role in supporting individuals, particularly those nearing the end of life, with family serving as their primary source of support. Many Chinese family caregivers in Singapore reported significant unmet needs in cancer care provision, with studies indicating that they often bear the brunt of caregiving responsibilities. Despite this, there has been a lack of research exploring the needs and perspectives of Chinese Singaporean family caregivers caring for terminally ill cancer patients at home. Thus, this study seeks to address this gap by investigating the lived experiences of Chinese Singaporean family caregivers providing end-of-life cancer care in a home setting. Methods This study employed a hermeneutic phenomenological approach, guided by the framework developed by van Manen (1990), to uncover the essential meaning of each participant's lived experience. In-depth, semi-structured virtual interviews were conducted face-to-face with ten Chinese Singaporean family caregivers. These caregivers shared their personal journeys of caring for a loved one with advanced cancer during their final stage of life at home. The interviews were audio recorded, and open-ended questions were used to facilitate discussion. Each interview lasted between thirty minutes to one hour. The researcher manually transcribed all audio recordings. Additionally, an external transcriber translated the interviews into written form to ensure accuracy and authenticity. The interview texts were then analysed and interpreted using the philosophical underpinnings rooted in phenomenology. Results The attempts to identify meanings and make sense of the Chinese Singaporean’ lived experience led to the development of two main themes and eight sub-themes. Under the primary theme of ‘experiences from caregiving’ comprises the sub-themes, ‘being a caregiver’, ‘suffering’, and ‘well-being’, and the major theme of ‘expectations in caregiving’, encompasses the sub-themes, ‘caregiving support’, ‘decision-making’, ‘communication’, ‘spirituality’ and ‘being a Chinese Singaporean’. Conclusion The results of this study have several important implications for practice, policy, and future research to support the Chinese family caregivers to ease their burden of caring. Chinese Family Caregiver Palliative Care End-of-Life Cancer Phenomenology Introduction Cancer has become the leading cause of death in Singapore, accounting for 28.2% of total deaths from 2017 to 2021 [ 1 ]. Between 2013–2017 and 2017–2021, new cancer cases in Singapore rose from 72,408 to 84,002, partly due to the aging population, as cancer risk increases with age [ 1 ]. Therefore, there is a growing need for palliative care, especially for individuals facing terminal cancer, with families often serving as their primary support network. Caring for individuals with advanced cancer is challenging for family caregivers, as advanced cancer weakens patients’ functioning and affects their quality of life [ 2 ]. However, the acute care hospitals in Singapore often overlook caregivers' supportive needs during the transition from hospital to home [ 3 ]. Informal caregivers frequently lack sufficient information and practical support when providing end-of-life care at home after hospital discharge [ 4 ]. Consequently, they deliver care at home based on their own unmet needs, which can harm patients' well-being and quality of life, possibly leading to unplanned hospital admissions [ 5 ]. Moreover, family caregivers with unmet needs experience higher levels of distress, burnout, and poor health, increasing their reliance on healthcare services [ 2 ]. Chinese Singaporeans, who have the highest cancer rates and constitute the largest population group in Singapore, often prefer to spend their final weeks or months at home with family [ 6 ]. A national survey found that 77% of Singaporeans wish to receive end-of-life care and pass away at home [ 7 ]. However, there is a significant lack of local research specifically exploring the experiences of Chinese Singaporean family caregivers providing end-of-life care at home for individuals with advanced cancer. Addressing this gap is crucial to effectively support these caregivers and alleviate their burdens, highlighting the need for further research in Singapore. Methods In this study, the focus was on comprehending and interpreting the lifeworld experiences of Chinese Singaporean family caregivers who provide end-of-life cancer care for their loved ones at home. The research employed a hermeneutic phenomenological approach to uncover the essential meaning inherent in each caregiver's lived experience [ 8 ]. Sample and Setting Ten Chinese Singaporean primary family caregivers, aged 21 years and above, who were caring for adult patients with advanced cancer (prognosis of at least three months) at home, and who were able to communicate in basic English or Mandarin, were selected through purposive sampling from two prominent home hospice care organizations in Singapore. Recruitment ceased when no new information emerged, indicating that the research had reached saturation. The participants in the study ranged in age from 37 to 81 years old, comprising 70% female caregivers and 30% male caregivers. In terms of religion, 50% (5) were Christian, 40% (4) were Buddhist, and 10% (1) was Free Thinker. Ethics Before the study began, ethical approval was obtained from both the University of Southern Queensland Research Ethics Committee (H20REA101) and the Agency for Integrated Care Institutional Review Board (2020-002). The procedures used in this study adhere to the tenets of the Declaration of Helsinki as specified in the National Statement on Ethical Conduct in Human Research. Permission to recruit participants was obtained from the directors of the two home hospice care organizations. Informed consent was obtained from all participants prior to the commencement of the interview. All interviews recorded were de-identified. Participants were assured that pseudonyms would be used in place of their actual names in all recorded files. Data Collection Data collection took place from August 2021 to February 2022. Due to the global COVID-19 pandemic, all originally planned in-person interviews were moved to virtual sessions using video-conference platforms. Each virtual interview was audio recorded and lasted approximately thirty minutes to one hour. Interviews were conducted in either English or Mandarin, depending on the participants' preference. They began with structured questions about caregiving experiences and transitioned to unstructured inquiries to elicit subjective insights. Throughout the interview process, participant validation was conducted by summarizing the information shared by the participants and then questioning them to ensure accuracy [ 9 ]. Field notes were used to record the objective observations of caregivers’ actions and reactions during the interview [ 9 ]. A reflective journal was also kept documenting the researcher’s prejudgments and views of every interview conducted [ 10 ]. Immediately after each interview, the audio recordings were manually transcribed into text by the researcher. Interviews conducted in Mandarin were first transcribed into simplified Chinese and then translated into English. All verbatim transcripts underwent cross-checking by an external transcriber, who independently transcribed every spoken word of the recorded interviews to ensure accuracy and authenticity of participants' verbal contributions [ 9 ]. Study Rigor Credibility was upheld by the researcher through continuous review of reflexive memos maintained since the study's initiation. The researcher utilized reflexivity to deeply engage with the textual data, aiming to thoroughly re-examine emerging themes [ 9 ]. During analysis, the researcher continuously compared interpretations with reflective notes and participants' narratives to ensure accuracy and authenticity. Interpretive findings were further enhanced by employing investigator triangulation, which involved collaborating with an external expert in palliative care nursing and phenomenological research [ 10 ]. This expert independently coded and interpreted the data by reviewing all the audio recordings, transcripts, field notes, reflective journals, and reflexive memos. Regular meetings were conducted to align coding and interpretations between the researcher and external expert, ensuring consensus on emerging concepts, sub-themes, and themes. Any discrepancies were resolved through detailed data examination and discussion. To ensure dependability and confirmability, a decision trail was established. This trail documented a detailed description of evidence, validating the integrity and rigor of the analytical decisions made by the researcher throughout the study [ 11 ]. Field notes were incorporated into the interview transcripts to provide a comprehensive understanding of the findings within the broader context. Data Generation The data generation employed van Manen’s six-step approach to hermeneutics phenomenology. Manual coding was performed to look for sub-themes and themes by listening to recordings, thoroughly reviewing transcripts, field notes, and a reflective journal, and engaging in ongoing dialogues with the textual data [ 12 ]. This method allowed for breaking down text data into smaller units, closely examining segmented texts, and repeatedly engaging with them through questioning to aid interpretation [ 12 ]. Additionally, the study employed thematic analysis, utilizing van Manen's framework, to extract meaningful themes from the data through detailed, selective, and holistic approaches [ 13 ]. In the detailed method, each statement from interview transcripts was scrutinized to uncover insights about the studied phenomena [ 13 ]. The selective approach involved the repeated review of audio recordings and interview texts to identify key sentences reflecting participants' experiences, which were highlighted using different colored pens and organized accordingly. Finally, the holistic method focused on identifying overarching statements that encapsulated the essential meaning of the entire text [ 12 , 13 ]. Structural analysis was also utilized to uncover patterns of meaningful relationships within the textual data, examining the text comprehensively to identify significant words or terms defining the phenomena under study [ 14 ]. While some verbatim extracts initially appeared disparate, their examination as a whole revealed significant connections to general concepts, sub-themes, and themes. After identifying and underlining key words and phrases, they were categorized as linking key words and grouped into conceptual categories, ultimately establishing sub-themes and themes. Findings Two themes were identified: (1) experiences from caregiving and (2) expectations in caregiving. Experiences from Caregiving Being a Caregiver In advanced cancer, as the patient’s physical function progressively declined and became increasingly frail, the participants recognized that their loved one required support and help with routine activities. One participant shared: As the days go by, I think the situation gets worse so the kind of help would change to like helping him with giving him food and helping him with the medicine… I think is part and parcel of caring for him I think. (Khiang) Adjusting to caregiving role by adapting to patient’s expectations of care and juggling multiple roles in life caused participants to experience role confusion. One participant felt lost and could not deal with the uncertainty that she was facing: I don’t know whether to do it like this or do it like that. I just feel that I can’t help my dad . (Ng) Many participants initially juggled full-time jobs alongside caregiving responsibilities. One participant attempted to balance these competing demands by adjusting her work schedule to find time to support and care for her father at home: Trying to clear whatever that I have on hand (work)… I try to complete what I need to complete within the limited hours so that I can free myself to go over to help my father . (Khiang) Caregiving transformed participants' outlook on life, fostering a positive perception rooted in their personal beliefs and ideologies. This newfound meaning and purpose helped participants cope more effectively with their responsibilities. One participant shared: 信仰(Belief)could be your ideology, your thinking, your thoughts. All these will help you to carry on in life. (Teo) Suffering Participants often felt overwhelmed and helpless while caring for terminally ill loved ones with cancer at home, leading to emotional distress and a variety of challenging emotions. One participant said: Previously I can feel his (father) touch I can hear his voice. Now he is so helpless he cannot really talk… So, the sadness would just dawn on me... (Khiang) One participant described a sense of guilt for not doing enough for his mother after knowing that her life was coming to an end: I could have done this for my mother… I should have been there for her. (Yong) Participants often experienced stress when their loved ones could not cope with the distressing symptoms they were going through and knowing the clock of patient’s life was counting down. One participant shared: So, the first stress was knowing that she's (mother) in pain and knowing that I was saying earlier, the clock flips. Now it’s counting down. (Yong) Most participants experienced caregiving frustration especially when they could do nothing to handle the situation they encountered, leaving them feeling increasingly helpless. One participant stated: He woke up every hour in the middle of the night and woke me up… Then I got up because there was no other way. Well, also lost a bit of temper … (Ng) Well-being Most family caregivers employed various self-management strategies to prepare for caregiving and maintain a positive attitude, which helped them better cope with the challenges and difficulties of their role. One participant described her ways of coping her caregiving stress: When I feel quite stress, what I do is that either I just walk down go downstairs for a while or maybe sometimes I talk to her (mother) I feel quite ok. (Lee) Other participants coped by living with acceptance that death is simply a part of life. This is life. And is part and parcel of a life cycle and we have to go through it… we faced it we sort of recognized that all of us will have to go . (Khiang) One participant spoke about the importance of practicing self-care behavior in order to provide better care for their loved one: Before you can take care of patient, you must first also know how to take care of yourself… I must be strong so I can take care of her (mother). (Lee) For some participants, maintaining a positive attitude in the process of caring was crucial. One participant said: If you don't have a positive attitude, alright it's not only going to affect the caregiver itself, it's going to affect the person that you are taking care of… (Tham) Expectations in Caregiving Caregiving Support Participants felt that the support from the healthcare professionals was helpful, particularly for one participant, who stated that home hospice care nurses played a crucial role in supporting him through challenging and stressful caregiving situations, providing a sense of companionship and reassurance during times of difficulty: If I really come to a state that I find a quite struggle with her (wife). I will call SOS for HCA nurses… they are very helpful… Otherwise alone quite a struggle . (Ho) One participant expressed an expectation for family members to actively share the caregiving responsibilities, aiming to alleviate her stress and reduce the overall caregiving burden she experienced: It’s impossible to spend so much time with him (father) because I still have a job and I still have other aspects of work to do. If other people (family members) can come and care for him, I think this is less stressful for me . (Ng) Decision-making In Chinese culture influenced by Confucian philosophy and familism, patients typically defer decision-making to their spouse or children [ 15 ]. However, the findings of this study did not support this assertion. For instance, one participant sought opinions from her mother about her medical care: I would talk to her (mother) to ask her for opinions. If she says don’t want, then I just dropped it … (Lee) Participants felt that knowing a patient’s last wishes gave them a sense of preparedness, which could relieve their burden of making decisions. One participant stated: We already got everything what she wants already…if really got anything happen, we will just follow what she says... (Lee) Communication Participants frequently engaged the entire family in decision-making, adhering to the Chinese tradition of collective decision-making, particularly concerning disclosure [ 16 ]. For instance, one participant consulted her siblings when faced with a challenging decision about whether to honor her mother's wish by informing her of her terminal condition or withholding this information: The doctor told me during one of the nights that she (mother) might just go. So, I sat down with my siblings to ask whether to let our mum know about this. Eventually, we decided to go back to her and tell her the truth. Because she had been telling me to let her know what the condition is …(Lee) While other participants felt that disclosing unfavorable medical information could potentially cause psychological harm to the patient. One participant shared: I don't know how they are going to process that information. Because that will affect them. He (father) will be thinking that “Oh no, I'm getting worse…” Psychologically he will be affected… (Tham) Spirituality Most participants identified religious spirituality as a valuable source to facilitate effective coping. One participant stated: I am able to move along and go through it is because I have also a strong religious belief that also help me move along I think. (Khiang) For other participants, turning to religious faith could also facilitate their acceptance of their loved one’s impending death. One participant said: There'll be a day that my dad will leave this world… we have to accept that part and parcel of life of faith in the sense… (Tham) Being a Chinese Singaporean By adhering to Chinese cultural norms, participants willingly undertook caregiving responsibilities to fulfill their filial duty and support their parents. One participant mentioned: It’s our Chinese culture which means that we have to be filial to our parent when we grow up . (Ng) To some participants, filial piety in Confucianism extends beyond reverence for parents to include respect and care for other family members as well. One participant said: Being a Chinese, I think the word 孝 (filial) is very important… this 孝 is also equally applicable to your counterparts, your loved ones… (Teo) Despite shifts in social dynamics where more men are assuming caregiving roles, there remains a strong belief that caregiving activities are predominantly associated with traditional feminine roles [ 17 ]. One participant shared: I’m not the daughter that she’s comfortable with. So, she still uncomfortable with the man taking care of her inside the restroom …(Yong) In Asian culture, particularly among Chinese, the concept of 'face' holds significant importance for maintaining self-image [ 18 ]. One participant refrained from disclosing his personal issues to avoid appearing vulnerable and losing 'face': I don't want my own personal thing to affect the office's work. I kept very quiet. Nobody knew . (Ho) Discussion This study examined the lived experience of the Chinese Singaporean family caregivers in delivering end-of-life care to a person with advanced cancer at home. The study was grounded in hermeneutic phenomenology which emphasizes the integration of participants' lived experiences with the interpretations of the researcher. Participants highlighted the importance of providing physical care to their loved ones as they experienced gradual functional decline, reflecting similar findings in Western studies [ 19 , 20 ]. As caregiver burden increased from balancing caregiving responsibilities with other life commitments, participants expressed a sense of role loss, consistent with findings by Ugalde et al where caregivers struggled to maintain their identity beyond caregiving [ 21 ]. Some also struggled to manage caregiving alongside work responsibilities, aligning with research by Ishii et al and Leow and Chan on Asian family caregivers [ 3 , 22 ]. Despite these challenges, participants found meaning and purpose in caregiving, echoing findings from Totman et al who found that maintaining positive perceptions helped caregivers harness their inner strength for coping [ 23 ]. Family caregivers in both Asian and Western contexts commonly experience distress and negative emotions while caring for loved ones with advanced illness [ 3 , 23 , 24 ]. The participants expressed feelings of helplessness and stress as they witnessed their loved ones' health deteriorating and approaching the end stage of life, aligning with previous research by Leow and Chan highlighting the emotional strain on caregivers witnessing their loved ones' suffering [ 3 ]. One participant in the study expressed feelings of guilt over not being able to sufficiently repay his mother for her sacrifices through filial care, despite literature suggesting that filial devotion can alleviate caregiving burdens [ 25 , 26 ]. While other participants found it frustrating to manage their loved one's challenging behavior as they approached the end-of-life. Participants employed various self-management strategies to cope with caregiving challenges and mitigate negative emotions while caring for their loved ones at home, potentially influencing their health and emotional well-being [ 27 ]. Some participants maintained a positive attitude to help them gain a sense of control over their caregiving situation [ 28 , 29 ]. This study also emphasizes the significance of family caregivers practicing self-care to sustain their health and quality of life. As highlighted by Dionne-Odom et al, caregivers' neglect of self-care can lead to mental health issues such as anxiety and depression, potentially impacting the quality of end-of-life care for their loved ones [ 28 , 29 ]. Participants emphasized the crucial support needed from healthcare professionals and family members. Home hospice care nurses played a pivotal role in assisting participants with stressful caregiving situations at home, echoing findings from Leow and Chan's study in Singapore where caregivers valued supportive healthcare professionals [ 3 ]. Studies from Western countries highlighted that strong support systems reduce caregiver burden and fulfill more needs [ 30 , 31 ]. Additionally, participants in this study expected family support to alleviate caregiving challenges, aligning with the Asian cultural emphasis on solidarity in support exchange [ 32 ]. In Singapore, Confucianism traditionally empowered Chinese families to decide for their elders [ 33 ]. Surprisingly, participants in this study sought their parents' opinions on care decisions, indicating a departure from traditional cultural values among Chinese caregivers. This shift aligns with Western cultural norms that emphasize individual autonomy in decision-making and support end-of-life care planning among Chinese families [ 15 ]. Participants often depend on collective family decisions, in line with filial piety, to make medical decisions for their older loved ones, aiming to protect them from psychological and physical harm [ 34 , 35 ]. This contrasts with patients' desires for disclosure, as seen in this study [ 36 , 37 ]. One participant mentioned withholding medical information to shield their loved one from despair. Participants relied on their religious beliefs to cope with caregiving challenges. Studies in Western contexts also found that caregivers with strong religious beliefs were better able to cope with suffering of providing end-of-life cancer [ 38 , 39 ]. Religious faith was another coping method that participants turned to which enables them to find solace and meaning in their caregiving [ 23 ]. Despite the heavy burden of caregiving, the participants in this study were willing to take on the caregiving duties due to the influence of the Confucian notion of filial piety to fulfill their responsibility or obligation to care and support their parent or spouse [ 26 , 38 ]. The patriarchal tradition and Confucian values historically assigned women the role of caring for the family [ 40 ]. Despite changes in Singaporean Chinese families, older individuals may still perceive caregiving as primarily a woman's responsibility [ 41 ]. This study highlights that male caregivers faced challenges in providing physical care for their older mothers. The study highlighted that 'face', or 'mianzhi' in Chinese culture, significantly shaped the behavior of Chinese family caregivers. 'Face' refers to one's reputation and self-image, which individuals strive to maintain in social interactions [ 42 ]. Participants in the study refrained from disclosing personal issues to avoid showing weakness and losing 'face', seeking respect and preserving their social standing [ 43 ]. Study Limitations The study involved interviewing participants once and suggests future research could benefit from a longitudinal approach to track changes in family caregivers' experiences over time. Despite a small sample size of 10 participants which limits generalizability, the study's primary aim was to achieve a deep understanding of individual lived experiences rather than focusing on broad applicability. Conclusion Chinese Singaporean family caregivers, caring for terminally ill loved ones at home, faced significant challenges such as uncertainty and isolation but remained optimistic and identified coping strategies and support needs aligned with their cultural values. The study underscored the caregivers' lack of preparedness, highlighting the need for nurse-led education and culturally competent support interventions to enhance caregiving readiness and address caregivers' beliefs effectively. Declarations Acknowledgments : I extend my gratitude to Dr Chong Poh Heng of HCA Hospice Care and Dr Yee Choon Meng of Dover Park Hospice Home Care for granting me permission to approach potential participants at their respective centres. Additionally, I appreciate the assistance of Raymond Ang from HCA Hospice Care in recruiting family caregivers and the support of the staff at both HCA Hospice Care and Dover Park Hospice Home Care in identifying potential participants Conflict of Interest : None The authors declare no conflicts of interest and received no external funding for this research. Compliance with Ethical Standards Ethical approval was obtained from both the University of Southern Queensland Research Ethics Committee (H20REA101) and the Agency for Integrated Care Institutional Review Board (2020-002). The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Informed consent was obtained from all participants prior to the commencement of the study. References National Registry of Diseases Office (2023) Singapore cancer registry annual registry report 2021 . Health Promotion Board. https://www.nrdo.gov.sg/docs/librariesprovider3/default-document-library/scr-ar-2021-web-report.pdf?sfvrsn=591fc02c_0. Accessed 23 July 2024 Goren A, Gilloteau I, Lees M, DaCosta Dibonaventura M (2014) Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer 22:1637-1646. https://doi.org/10.1007/s00520-014-2122-6 Leow M, Chan S (2017) The challenges, emotions, coping, and gains of family caregivers caring for patients with advanced cancer in Singapore. Cancer Nurs 40:22-30. https://doi.org/10.1097/ncc.0000000000000354 Kamal AH, Bull J, Kavalieratos D, Taylor DH, Downey W, Abernethy AP (2011) Palliative care needs of patients with cancer living in the community. J Oncol Pract 7:382-389. https://doi.org/10.1200/JOP.2011.000455 Given B, Given C, Sherwood P (2012) The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 28:205-212. https://doi.org/10.1016/j.soncn.2012.09.002 Poon WH, O’Connor M (2009) Development of palliative care in Singapore: An overview. Singapore Nurs J 36:48-56. Lien Foundation (2014) Doctors and nurses report inadequacies in medical and nursing education, training, communication and healthcare system support for the terminally ill in Singapore. Lien Foundation.https://lienfoundation.org/sites/default/files/Lien%20Fdn%20Survey%20of%20Death%20Attitudes%20-%20Doctors%20n%20Nurses%20Final%2018%20June_0.pdf. Accessed 24 November 2019 van Manen M (1997) From meaning to method. Quali Health Research 7:345-369. Polit DF, Beck CT (2022) Essentials of nursing research: Appraisal evidence for nursing practice, 10 th edn. Wolters Kluwer, Philadelphia Lincoln Y, Guba EG (1985) Naturalistic inquiry. Sage, California. Rodgers BL, Cowles KV (1993) The qualitative research audit trail: A complex collection of documentation. Res Nurs Health 16:219–226. https://doi.org/10.1002/nur.4770160309 Saldana J (2016) The coding manual for qualitative researchers, 3 rd edn. Sage, United Kingdom. van Manen, M (1990) Researching lived experience: Human science for an action sensitive pedagogy. State University of New York Press, New York. Streubert H, Carpenter D (2011) Qualitative research in nursing, 5 th edn. Wolters Kluwer/Lippincott Williams & Wilkins, Philadelphia. Chan C, Ho A, Leung P, Chochinov H, Neimeyer R, Pang S, Tse D (2012) The blessings and the curses of filial piety on dignity at the end of life: Lived experience of Hong Kong Chinese adult children caregivers. J Ethnic Cul Div Soc Work 21:277-296. https://doi.org/10.1080/15313204.2012.729177 Fischer S, Sauaia A, Min S, Kutner J (2012) Advance directive discussions: Lost in translation or lost opportunities?. J Palliat Med 15:86-92. https://doi.org/10.1089/jpm.2011.0328 Baker K, Robertson N (2008) Coping with caring for someone with dementia: Reviewing the literature about men. Aging Ment Health 12:413-422. https://doi.org/10.1080/13607860802224250 Wang, K., Fang, Y., & Teo, S. (2011). The moderating effect of face values: Information sharing and initiative encouragement in China’s civil service. Inter J Cross Cul Manage 11:325-340. https://doi.org/10.1177/1470595811401649 Benites A, Rodin G, de Oliveira-Cardoso É, dos Santos M (2021) “You begin to give more value in life, in minutes, in seconds”: Spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil. Support Care Cancer 30:2631-2638. https://doi.org/10.1007/s00520-021-06712-w Rocío L, Rojas E, González M, Carreño S, Diana C, Gómez O (2017) Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process. Int J Palliat Nur, 23:332-339. https://doi.org/10.12968/ijpn.2017.23.7.332 Ugalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: A qualitative study. Support Care Cancer 20:1175-1181. https://doi.org/10.1007/s00520-011-1194-9 Ishii Y, Miyashita M, Sato K, Ozawa T (2012) A family’s difficulties in caring for a cancer patient at the end of life at home in Japan. J Pain Symptom Manage 44:552-562. https://doi.org/10.1016/j.jpainsymman.2011.10.011 Totman J, Pistrang N, Smith S, Hennessey S, Martin J (2015) ‘You only have one chance to get it right’: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med 29:496-507. https://doi.org/10.1177/0269216314566840 Saleh F, O’Neill C (2018) The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain. Clinical Nurs Studies 6:57-71. https://doi.org/10.5430/cns.v6n3p57 Ong H, Vaingankar J, Abdin E, Sambasivam R, Fauziana R, Tan M, Chong SA, Goveas RR, Chiam P C, Subramaniam M (2018) Resilience and burden in caregivers of older adults: Moderating and mediating effects of perceived social support. BMC Psych 18:1-9. https://doi.org/10.1186/s12888-018-1616-z Pan Y, Chen R, Yang D (2022) The relationship between filial piety and caregiver burden among adult children: A systematic review and meta-analysis. Geriatr Nurs 43:113-123. https://doi.org/10.1016/j.gerinurse.2021.10.024 Grant M, Sun V, Fujinami R, Sidhu R, Otis-Green S, Juarez G, Klein L, Ferrell B (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncol Nurs Forum 40:337-346. https://doi.org/10.1188/13.onf.337-346 Dionne-Odom J, Demark-Wahnefried W, Taylor R, Rocque G, Azuero A, Acemgil A, Martin MY, Astin M, Ejem D, Kvale E, Heaton K, Pisu M, Partridge EE, Bakitas MA (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25:2437-2444. https://doi.org/10.1007/s00520-017-3650-7 Park SM, Kim YJ, Kim S, Choi JS, Lim H, Choi YS, Hong YS, Kim S, Heo DS, Kang KM, Jeong HS, Lee CG, Moon DH, Choi J, Kong S, Yun YH (2010) Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance. Support Care Cancer 18:699-706. https://doi.org/10.1007/s00520-009-0668-5 Guo J, Reblin M, Tay D, Ellington L, Beck A, Cloyes K (2021) Patterns of stress and support in social support networks of in-home hospice cancer family caregivers. J Soc Pers Relat 38:3121-3141. https://doi.org/10.1177/02654075211024743 Ullrich A, Marx G, Bergelt C, Benze G, Zhang Y, Wowretzko F, Heine J, Dickel L, Nauck F, Bokemeyer C, Oechsle K (2020) Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: A prospective longitudinal study. Support Care Cancer 29:1303-1315. https://doi.org/10.1007/s00520-020-05565-z Naganuma Y, Yamaoka K, Takahashi K (2021) Relationship between social cohesion and the care burden of primary family caregivers in central Tokyo, Japan. Health Science Reports 4:1-11. https://doi.org/10.1002/hsr2.238 Krishna L (2012) Best interests determination within the Singapore context. Nurs Ethics 19:787-799. https://doi.org/10.1177/0969733011433316 Ang G, Zhang D, Lim K (2016) Differences in attitudes to end-of-life care among patients, relatives and healthcare professionals. Singapore Med J 57:22-28. https://doi.org/10.11622/smedj.2016008 Searight HR, Gafford J (2005) Cultural diversity at the end of life: Issues and guidelines for family physicians. Am Fam Physician 71:515-522. Nie X, Ye D, Wang Q, Manyande A, Yang L, Qiu H (2015) Poor-prognosis disclosure preference in cancer patient-caregiver dyads and its association with their quality of life and perceived stress: A cross-sectional survey in mainland China. Psychooncology 25:1099-1105. https://doi.org/10.1002/pon.4055 Ni Y, Alraek T (2016) What circumstances lead to non-disclosure of cancer-related information in China? A qualitative study. Support Care Cancer 25:811-816. https://doi.org/10.1007/s00520-016-3464-z Lai D (2010) Filial piety, caregiving appraisal, and caregiving burden. Research Aging 32:200-223. https://doi.org/10.1177/0164027509351475 Vigna P, de Castro I, Fumis R (2020) Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively. BMC Palliat Care 19:1-8. https://doi.org/10.1186/s12904-020-00585-2 Arland T, Lin H (1994) Social change and the family in Taiwan. University of Chicago Press, Chicago. Chang L, Basnyat I (2016) Exploring family support for older Chinese Singaporean women in a Confucian society. Health Commun 32:603-611. https://doi.org/10.1080/10410236.2016.1146568 Hong Q, Yu G (2018) The face view of China and foreign countries under cross-cultural communication. Theory Pract Language Studies 8:1324. https://doi.org/10.17507/tpls.0810.10 Qi X (2011) Face: A Chinese concept in a global sociology. J Socio 47:279-295. https://doi.org/10.1177%2F1440783311407692 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 29 Nov, 2024 Reviews received at journal 28 Nov, 2024 Reviewers agreed at journal 08 Nov, 2024 Reviewers invited by journal 05 Oct, 2024 Editor assigned by journal 05 Oct, 2024 Submission checks completed at journal 25 Aug, 2024 First submitted to journal 18 Aug, 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-4934422","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":344913649,"identity":"928c7866-0a30-4323-9a81-47b3558f1a57","order_by":0,"name":"Seng Hock Martin Ang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA2UlEQVRIiWNgGAWjYDACCRiDmYHxAZDi4SNaCw8zA7MBiGYjXgsDAxuYTVCL/OzmZw+/5tjl27PzHqsEMmTYGJgfPrqBR4vBnWPmxrLbki17mPnSbgMZQIexGRvn4NMikWAmLbmN2YCHmcfsNpAB1MLDJo1Pi/yM9G9ALfVgLcVABmEtDDdyzCQ/bjsM1sIIZBDWYnAjp0yacdtxA57DPMYgBg8bMwG/AB22TfLntmoD9v4zhh+BDHt+9uaHj/E6DAiYeVAYzASUgwDjD3TGKBgFo2AUjAJkAABNWTxwuJjfdAAAAABJRU5ErkJggg==","orcid":"","institution":"Singapore Institute of Technology","correspondingAuthor":true,"prefix":"","firstName":"Seng","middleName":"Hock Martin","lastName":"Ang","suffix":""},{"id":344913650,"identity":"1d4c69dd-56cc-4eaf-a8ed-d00dd0f29336","order_by":1,"name":"Wing Hong Edward Poon","email":"","orcid":"","institution":"Singapore Institute of Technology","correspondingAuthor":false,"prefix":"","firstName":"Wing","middleName":"Hong Edward","lastName":"Poon","suffix":""},{"id":344913651,"identity":"dd153d5e-e97b-40cb-9c2f-cb3e6fb05a8a","order_by":2,"name":"Odette Best","email":"","orcid":"","institution":"University of Southern Queensland","correspondingAuthor":false,"prefix":"","firstName":"Odette","middleName":"","lastName":"Best","suffix":""},{"id":344913652,"identity":"d76ca4ee-eb9d-43a3-bd23-1276f666022b","order_by":3,"name":"Coralie Graham","email":"","orcid":"","institution":"University of Southern Queensland","correspondingAuthor":false,"prefix":"","firstName":"Coralie","middleName":"","lastName":"Graham","suffix":""}],"badges":[],"createdAt":"2024-08-18 17:55:37","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4934422/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4934422/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":65159377,"identity":"f4260378-d1d6-437e-afac-e4963aa0ad28","added_by":"auto","created_at":"2024-09-24 08:40:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":398001,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4934422/v1/ff7321af-71df-45f3-80da-9247a189e4b4.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Exploring the Lived Experience of Chinese Family Caregivers Caring for End-Of-Life Cancer Patients at Home: A Phenomenological Study in Singapore","fulltext":[{"header":"Introduction","content":"\u003cp\u003eCancer has become the leading cause of death in Singapore, accounting for 28.2% of total deaths from 2017 to 2021 [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Between 2013\u0026ndash;2017 and 2017\u0026ndash;2021, new cancer cases in Singapore rose from 72,408 to 84,002, partly due to the aging population, as cancer risk increases with age [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Therefore, there is a growing need for palliative care, especially for individuals facing terminal cancer, with families often serving as their primary support network.\u003c/p\u003e \u003cp\u003eCaring for individuals with advanced cancer is challenging for family caregivers, as advanced cancer weakens patients\u0026rsquo; functioning and affects their quality of life [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. However, the acute care hospitals in Singapore often overlook caregivers' supportive needs during the transition from hospital to home [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Informal caregivers frequently lack sufficient information and practical support when providing end-of-life care at home after hospital discharge [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Consequently, they deliver care at home based on their own unmet needs, which can harm patients' well-being and quality of life, possibly leading to unplanned hospital admissions [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Moreover, family caregivers with unmet needs experience higher levels of distress, burnout, and poor health, increasing their reliance on healthcare services [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eChinese Singaporeans, who have the highest cancer rates and constitute the largest population group in Singapore, often prefer to spend their final weeks or months at home with family [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. A national survey found that 77% of Singaporeans wish to receive end-of-life care and pass away at home [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. However, there is a significant lack of local research specifically exploring the experiences of Chinese Singaporean family caregivers providing end-of-life care at home for individuals with advanced cancer. Addressing this gap is crucial to effectively support these caregivers and alleviate their burdens, highlighting the need for further research in Singapore.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eIn this study, the focus was on comprehending and interpreting the lifeworld experiences of Chinese Singaporean family caregivers who provide end-of-life cancer care for their loved ones at home. The research employed a hermeneutic phenomenological approach to uncover the essential meaning inherent in each caregiver's lived experience [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSample and Setting\u003c/h2\u003e \u003cp\u003e Ten Chinese Singaporean primary family caregivers, aged 21 years and above, who were caring for adult patients with advanced cancer (prognosis of at least three months) at home, and who were able to communicate in basic English or Mandarin, were selected through purposive sampling from two prominent home hospice care organizations in Singapore. Recruitment ceased when no new information emerged, indicating that the research had reached saturation.\u003c/p\u003e \u003cp\u003eThe participants in the study ranged in age from 37 to 81 years old, comprising 70% female caregivers and 30% male caregivers. In terms of religion, 50% (5) were Christian, 40% (4) were Buddhist, and 10% (1) was Free Thinker.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eEthics\u003c/h2\u003e \u003cp\u003e Before the study began, ethical approval was obtained from both the University of Southern Queensland Research Ethics Committee (H20REA101) and the Agency for Integrated Care Institutional Review Board (2020-002). The procedures used in this study adhere to the tenets of the Declaration of Helsinki as specified in the National Statement on Ethical Conduct in Human Research.\u003c/p\u003e \u003cp\u003ePermission to recruit participants was obtained from the directors of the two home hospice care organizations. Informed consent was obtained from all participants prior to the commencement of the interview. All interviews recorded were de-identified. Participants were assured that pseudonyms would be used in place of their actual names in all recorded files.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003eData collection took place from August 2021 to February 2022.\u003c/p\u003e \u003cp\u003eDue to the global COVID-19 pandemic, all originally planned in-person interviews were moved to virtual sessions using video-conference platforms. Each virtual interview was audio recorded and lasted approximately thirty minutes to one hour. Interviews were conducted in either English or Mandarin, depending on the participants' preference. They began with structured questions about caregiving experiences and transitioned to unstructured inquiries to elicit subjective insights.\u003c/p\u003e \u003cp\u003eThroughout the interview process, participant validation was conducted by summarizing the information shared by the participants and then questioning them to ensure accuracy [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Field notes were used to record the objective observations of caregivers\u0026rsquo; actions and reactions during the interview [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. A reflective journal was also kept documenting the researcher\u0026rsquo;s prejudgments and views of every interview conducted [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eImmediately after each interview, the audio recordings were manually transcribed into text by the researcher. Interviews conducted in Mandarin were first transcribed into simplified Chinese and then translated into English. All verbatim transcripts underwent cross-checking by an external transcriber, who independently transcribed every spoken word of the recorded interviews to ensure accuracy and authenticity of participants' verbal contributions [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eStudy Rigor\u003c/h2\u003e \u003cp\u003eCredibility was upheld by the researcher through continuous review of reflexive memos maintained since the study's initiation. The researcher utilized reflexivity to deeply engage with the textual data, aiming to thoroughly re-examine emerging themes [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. During analysis, the researcher continuously compared interpretations with reflective notes and participants' narratives to ensure accuracy and authenticity.\u003c/p\u003e \u003cp\u003eInterpretive findings were further enhanced by employing investigator triangulation, which involved collaborating with an external expert in palliative care nursing and phenomenological research [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. This expert independently coded and interpreted the data by reviewing all the audio recordings, transcripts, field notes, reflective journals, and reflexive memos. Regular meetings were conducted to align coding and interpretations between the researcher and external expert, ensuring consensus on emerging concepts, sub-themes, and themes. Any discrepancies were resolved through detailed data examination and discussion.\u003c/p\u003e \u003cp\u003eTo ensure dependability and confirmability, a decision trail was established. This trail documented a detailed description of evidence, validating the integrity and rigor of the analytical decisions made by the researcher throughout the study [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Field notes were incorporated into the interview transcripts to provide a comprehensive understanding of the findings within the broader context.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData Generation\u003c/h2\u003e \u003cp\u003eThe data generation employed van Manen\u0026rsquo;s six-step approach to hermeneutics phenomenology. Manual coding was performed to look for sub-themes and themes by listening to recordings, thoroughly reviewing transcripts, field notes, and a reflective journal, and engaging in ongoing dialogues with the textual data [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. This method allowed for breaking down text data into smaller units, closely examining segmented texts, and repeatedly engaging with them through questioning to aid interpretation [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAdditionally, the study employed thematic analysis, utilizing van Manen's framework, to extract meaningful themes from the data through detailed, selective, and holistic approaches [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. In the detailed method, each statement from interview transcripts was scrutinized to uncover insights about the studied phenomena [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. The selective approach involved the repeated review of audio recordings and interview texts to identify key sentences reflecting participants' experiences, which were highlighted using different colored pens and organized accordingly. Finally, the holistic method focused on identifying overarching statements that encapsulated the essential meaning of the entire text [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eStructural analysis was also utilized to uncover patterns of meaningful relationships within the textual data, examining the text comprehensively to identify significant words or terms defining the phenomena under study [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. While some verbatim extracts initially appeared disparate, their examination as a whole revealed significant connections to general concepts, sub-themes, and themes. After identifying and underlining key words and phrases, they were categorized as linking key words and grouped into conceptual categories, ultimately establishing sub-themes and themes.\u003c/p\u003e \u003c/div\u003e"},{"header":"Findings","content":"\u003cp\u003eTwo themes were identified: (1) experiences from caregiving and (2) expectations in caregiving.\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eExperiences from Caregiving\u003c/h2\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003eBeing a Caregiver\u003c/h2\u003e \u003cp\u003eIn advanced cancer, as the patient\u0026rsquo;s physical function progressively declined and became increasingly frail, the participants recognized that their loved one required support and help with routine activities. One participant shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eAs the days go by, I think the situation gets worse so the kind of help would change to like helping him with giving him food and helping him with the medicine\u0026hellip; I think is part and parcel of caring for him I think.\u003c/em\u003e (Khiang)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAdjusting to caregiving role by adapting to patient\u0026rsquo;s expectations of care and juggling multiple roles in life caused participants to experience role confusion. One participant felt lost and could not deal with the uncertainty that she was facing:\u003c/p\u003e \u003cp\u003e \u003cem\u003eI don\u0026rsquo;t know whether to do it like this or do it like that. I just feel that I can\u0026rsquo;t help my dad\u003c/em\u003e. (Ng)\u003c/p\u003e \u003cp\u003eMany participants initially juggled full-time jobs alongside caregiving responsibilities. One participant attempted to balance these competing demands by adjusting her work schedule to find time to support and care for her father at home:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eTrying to clear whatever that I have on hand (work)\u0026hellip; I try to complete what I need to complete within the limited hours so that I can free myself to go over to help my father\u003c/em\u003e. (Khiang)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eCaregiving transformed participants' outlook on life, fostering a positive perception rooted in their personal beliefs and ideologies. This newfound meaning and purpose helped participants cope more effectively with their responsibilities. One participant shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e信仰(Belief)could be your ideology, your thinking, your thoughts. All these will help you to carry on in life.\u003c/em\u003e (Teo)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eSuffering\u003c/h2\u003e \u003cp\u003e Participants often felt overwhelmed and helpless while caring for terminally ill loved ones with cancer at home, leading to emotional distress and a variety of challenging emotions. One participant said:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003ePreviously I can feel his (father) touch I can hear his voice. Now he is so helpless he cannot really talk\u0026hellip; So, the sadness would just dawn on me...\u003c/em\u003e (Khiang)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOne participant described a sense of guilt for not doing enough for his mother after knowing that her life was coming to an end:\u003c/p\u003e \u003cp\u003e \u003cem\u003eI could have done this for my mother\u0026hellip; I should have been there for her.\u003c/em\u003e (Yong)\u003c/p\u003e \u003cp\u003eParticipants often experienced stress when their loved ones could not cope with the distressing symptoms they were going through and knowing the clock of patient\u0026rsquo;s life was counting down. One participant shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eSo, the first stress was knowing that she's (mother) in pain and knowing that I was saying earlier, the clock flips. Now it\u0026rsquo;s counting down.\u003c/em\u003e (Yong)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e Most participants experienced caregiving frustration especially when they could do nothing to handle the situation they encountered, leaving them feeling increasingly helpless. One participant stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eHe woke up every hour in the middle of the night and woke me up\u0026hellip; Then I got up because there was no other way. Well, also lost a bit of temper\u003c/em\u003e\u0026hellip; (Ng)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eWell-being\u003c/h2\u003e \u003cp\u003eMost family caregivers employed various self-management strategies to prepare for caregiving and maintain a positive attitude, which helped them better cope with the challenges and difficulties of their role. One participant described her ways of coping her caregiving stress:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eWhen I feel quite stress, what I do is that either I just walk down go downstairs for a while or maybe sometimes I talk to her (mother) I feel quite ok.\u003c/em\u003e (Lee)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOther participants coped by living with acceptance that death is simply a part of life.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThis is life. And is part and parcel of a life cycle and we have to go through it\u0026hellip; we faced it we sort of recognized that all of us will have to go\u003c/em\u003e. (Khiang)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOne participant spoke about the importance of practicing self-care behavior in order to provide better care for their loved one:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eBefore you can take care of patient, you must first also know how to take care of yourself\u0026hellip; I must be strong so I can take care of her (mother).\u003c/em\u003e (Lee)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e For some participants, maintaining a positive attitude in the process of caring was crucial. One participant said:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eIf you don't have a positive attitude, alright it's not only going to affect the caregiver itself, it's going to affect the person that you are taking care of\u0026hellip;\u003c/em\u003e(Tham)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eExpectations in Caregiving\u003c/h2\u003e \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e \u003ch2\u003eCaregiving Support\u003c/h2\u003e \u003cp\u003eParticipants felt that the support from the healthcare professionals was helpful, particularly for one participant, who stated that home hospice care nurses played a crucial role in supporting him through challenging and stressful caregiving situations, providing a sense of companionship and reassurance during times of difficulty:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIf I really come to a state that I find a quite struggle with her (wife). I will call SOS for HCA nurses\u0026hellip; they are very helpful\u0026hellip; Otherwise alone quite a struggle\u003c/em\u003e. (Ho)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eOne participant expressed an expectation for family members to actively share the caregiving responsibilities, aiming to alleviate her stress and reduce the overall caregiving burden she experienced:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt\u0026rsquo;s impossible to spend so much time with him (father) because I still have a job and I still have other aspects of work to do. If other people (family members) can come and care for him, I think this is less stressful for me\u003c/em\u003e. (Ng)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eDecision-making\u003c/h2\u003e \u003cp\u003eIn Chinese culture influenced by Confucian philosophy and familism, patients typically defer decision-making to their spouse or children [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. However, the findings of this study did not support this assertion. For instance, one participant sought opinions from her mother about her medical care:\u003c/p\u003e \u003cp\u003e \u003cem\u003eI would talk to her (mother) to ask her for opinions. If she says don\u0026rsquo;t want, then I just dropped it\u003c/em\u003e\u0026hellip; (Lee)\u003c/p\u003e \u003cp\u003eParticipants felt that knowing a patient\u0026rsquo;s last wishes gave them a sense of preparedness, which could relieve their burden of making decisions. One participant stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eWe already got everything what she wants already\u0026hellip;if really got anything happen, we will just follow what she says...\u003c/em\u003e (Lee)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eCommunication\u003c/h2\u003e \u003cp\u003eParticipants frequently engaged the entire family in decision-making, adhering to the Chinese tradition of collective decision-making, particularly concerning disclosure [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. For instance, one participant consulted her siblings when faced with a challenging decision about whether to honor her mother's wish by informing her of her terminal condition or withholding this information:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThe doctor told me during one of the nights that she (mother) might just go. So, I sat down with my siblings to ask whether to let our mum know about this. Eventually, we decided to go back to her and tell her the truth. Because she had been telling me to let her know what the condition is\u003c/em\u003e\u0026hellip;(Lee)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eWhile other participants felt that disclosing unfavorable medical information could potentially cause psychological harm to the patient. One participant shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI don't know how they are going to process that information. Because that will affect them. He (father) will be thinking that \u0026ldquo;Oh no, I'm getting worse\u0026hellip;\u0026rdquo; Psychologically he will be affected\u0026hellip;\u003c/em\u003e (Tham)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eSpirituality\u003c/h2\u003e \u003cp\u003eMost participants identified religious spirituality as a valuable source to facilitate effective coping. One participant stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI am able to move along and go through it is because I have also a strong religious belief that also help me move along I think.\u003c/em\u003e (Khiang)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFor other participants, turning to religious faith could also facilitate their acceptance of their loved one\u0026rsquo;s impending death. One participant said:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThere'll be a day that my dad will leave this world\u0026hellip; we have to accept that part and parcel of life of faith in the sense\u0026hellip;\u003c/em\u003e (Tham)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eBeing a Chinese Singaporean\u003c/h2\u003e \u003cp\u003eBy adhering to Chinese cultural norms, participants willingly undertook caregiving responsibilities to fulfill their filial duty and support their parents. One participant mentioned:\u003c/p\u003e \u003cp\u003e \u003cem\u003eIt\u0026rsquo;s our Chinese culture which means that we have to be filial to our parent when we grow up\u003c/em\u003e. (Ng)\u003c/p\u003e \u003cp\u003eTo some participants, filial piety in Confucianism extends beyond reverence for parents to include respect and care for other family members as well. One participant said:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eBeing a Chinese, I think the word 孝 (filial) is very important\u0026hellip; this 孝 is also equally applicable to your counterparts, your loved ones\u0026hellip;\u003c/em\u003e (Teo)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eDespite shifts in social dynamics where more men are assuming caregiving roles, there remains a strong belief that caregiving activities are predominantly associated with traditional feminine roles [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. One participant shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI\u0026rsquo;m not the daughter that she\u0026rsquo;s comfortable with. So, she still uncomfortable with the man taking care of her inside the restroom\u003c/em\u003e\u0026hellip;(Yong)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn Asian culture, particularly among Chinese, the concept of 'face' holds significant importance for maintaining self-image [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. One participant refrained from disclosing his personal issues to avoid appearing vulnerable and losing 'face':\u003c/p\u003e \u003cp\u003e \u003cem\u003eI don't want my own personal thing to affect the office's work. I kept very quiet. Nobody knew\u003c/em\u003e. (Ho)\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study examined the lived experience of the Chinese Singaporean family caregivers in delivering end-of-life care to a person with advanced cancer at home. The study was grounded in hermeneutic phenomenology which emphasizes the integration of participants' lived experiences with the interpretations of the researcher.\u003c/p\u003e \u003cp\u003eParticipants highlighted the importance of providing physical care to their loved ones as they experienced gradual functional decline, reflecting similar findings in Western studies [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. As caregiver burden increased from balancing caregiving responsibilities with other life commitments, participants expressed a sense of role loss, consistent with findings by Ugalde et al where caregivers struggled to maintain their identity beyond caregiving [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Some also struggled to manage caregiving alongside work responsibilities, aligning with research by Ishii et al and Leow and Chan on Asian family caregivers [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Despite these challenges, participants found meaning and purpose in caregiving, echoing findings from Totman et al who found that maintaining positive perceptions helped caregivers harness their inner strength for coping [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFamily caregivers in both Asian and Western contexts commonly experience distress and negative emotions while caring for loved ones with advanced illness [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. The participants expressed feelings of helplessness and stress as they witnessed their loved ones' health deteriorating and approaching the end stage of life, aligning with previous research by Leow and Chan highlighting the emotional strain on caregivers witnessing their loved ones' suffering [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. One participant in the study expressed feelings of guilt over not being able to sufficiently repay his mother for her sacrifices through filial care, despite literature suggesting that filial devotion can alleviate caregiving burdens [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. While other participants found it frustrating to manage their loved one's challenging behavior as they approached the end-of-life.\u003c/p\u003e \u003cp\u003eParticipants employed various self-management strategies to cope with caregiving challenges and mitigate negative emotions while caring for their loved ones at home, potentially influencing their health and emotional well-being [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Some participants maintained a positive attitude to help them gain a sense of control over their caregiving situation [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This study also emphasizes the significance of family caregivers practicing self-care to sustain their health and quality of life. As highlighted by Dionne-Odom et al, caregivers' neglect of self-care can lead to mental health issues such as anxiety and depression, potentially impacting the quality of end-of-life care for their loved ones [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eParticipants emphasized the crucial support needed from healthcare professionals and family members. Home hospice care nurses played a pivotal role in assisting participants with stressful caregiving situations at home, echoing findings from Leow and Chan's study in Singapore where caregivers valued supportive healthcare professionals [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Studies from Western countries highlighted that strong support systems reduce caregiver burden and fulfill more needs [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Additionally, participants in this study expected family support to alleviate caregiving challenges, aligning with the Asian cultural emphasis on solidarity in support exchange [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn Singapore, Confucianism traditionally empowered Chinese families to decide for their elders [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. Surprisingly, participants in this study sought their parents' opinions on care decisions, indicating a departure from traditional cultural values among Chinese caregivers. This shift aligns with Western cultural norms that emphasize individual autonomy in decision-making and support end-of-life care planning among Chinese families [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eParticipants often depend on collective family decisions, in line with filial piety, to make medical decisions for their older loved ones, aiming to protect them from psychological and physical harm [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. This contrasts with patients' desires for disclosure, as seen in this study [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. One participant mentioned withholding medical information to shield their loved one from despair.\u003c/p\u003e \u003cp\u003eParticipants relied on their religious beliefs to cope with caregiving challenges. Studies in Western contexts also found that caregivers with strong religious beliefs were better able to cope with suffering of providing end-of-life cancer [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Religious faith was another coping method that participants turned to which enables them to find solace and meaning in their caregiving [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite the heavy burden of caregiving, the participants in this study were willing to take on the caregiving duties due to the influence of the Confucian notion of filial piety to fulfill their responsibility or obligation to care and support their parent or spouse [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. The patriarchal tradition and Confucian values historically assigned women the role of caring for the family [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Despite changes in Singaporean Chinese families, older individuals may still perceive caregiving as primarily a woman's responsibility [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. This study highlights that male caregivers faced challenges in providing physical care for their older mothers.\u003c/p\u003e \u003cp\u003eThe study highlighted that 'face', or 'mianzhi' in Chinese culture, significantly shaped the behavior of Chinese family caregivers. 'Face' refers to one's reputation and self-image, which individuals strive to maintain in social interactions [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. Participants in the study refrained from disclosing personal issues to avoid showing weakness and losing 'face', seeking respect and preserving their social standing [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eStudy Limitations\u003c/h2\u003e \u003cp\u003eThe study involved interviewing participants once and suggests future research could benefit from a longitudinal approach to track changes in family caregivers' experiences over time. Despite a small sample size of 10 participants which limits generalizability, the study's primary aim was to achieve a deep understanding of individual lived experiences rather than focusing on broad applicability.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eChinese Singaporean family caregivers, caring for terminally ill loved ones at home, faced significant challenges such as uncertainty and isolation but remained optimistic and identified coping strategies and support needs aligned with their cultural values. The study underscored the caregivers' lack of preparedness, highlighting the need for nurse-led education and culturally competent support interventions to enhance caregiving readiness and address caregivers' beliefs effectively.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e: I extend my gratitude to Dr Chong Poh Heng of HCA Hospice Care and Dr Yee Choon Meng of Dover Park Hospice Home Care for granting me permission to approach potential participants at their respective centres. Additionally, I appreciate the assistance of Raymond Ang from HCA Hospice Care in recruiting family caregivers and the support of the staff at both HCA Hospice Care and Dover Park Hospice Home Care in identifying potential participants\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003cstrong\u003eConflict of Interest\u003c/strong\u003e: None\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflicts of interest and received no external funding for this research.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eCompliance with Ethical Standards\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was obtained from both the University of Southern Queensland Research Ethics Committee (H20REA101) and the Agency for Integrated Care Institutional Review Board (2020-002). The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Informed consent was obtained from all participants prior to the commencement of the study.\u0026nbsp;\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eNational Registry of Diseases Office (2023) Singapore cancer registry annual registry report 2021\u003cem\u003e. \u003c/em\u003eHealth Promotion Board. https://www.nrdo.gov.sg/docs/librariesprovider3/default-document-library/scr-ar-2021-web-report.pdf?sfvrsn=591fc02c_0. Accessed 23 July 2024\u003c/li\u003e\n\u003cli\u003eGoren A, Gilloteau I, Lees M, DaCosta Dibonaventura M (2014) Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer 22:1637-1646. https://doi.org/10.1007/s00520-014-2122-6\u003c/li\u003e\n\u003cli\u003eLeow M, Chan S (2017) The challenges, emotions, coping, and gains of family caregivers caring for patients with advanced cancer in Singapore. Cancer Nurs 40:22-30. https://doi.org/10.1097/ncc.0000000000000354\u003c/li\u003e\n\u003cli\u003eKamal AH, Bull J, Kavalieratos D, Taylor DH, Downey W, Abernethy AP (2011) Palliative care needs of patients with cancer living in the community. J Oncol Pract 7:382-389. https://doi.org/10.1200/JOP.2011.000455\u003c/li\u003e\n\u003cli\u003eGiven B, Given C, Sherwood P (2012) The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 28:205-212. https://doi.org/10.1016/j.soncn.2012.09.002\u003c/li\u003e\n\u003cli\u003ePoon WH, O\u0026rsquo;Connor M (2009) Development of palliative care in Singapore: An overview. Singapore Nurs J 36:48-56.\u003c/li\u003e\n\u003cli\u003eLien Foundation (2014) Doctors and nurses report inadequacies in medical and nursing education, training, communication and healthcare system support for the terminally ill in Singapore. Lien Foundation.https://lienfoundation.org/sites/default/files/Lien%20Fdn%20Survey%20of%20Death%20Attitudes%20-%20Doctors%20n%20Nurses%20Final%2018%20June_0.pdf. Accessed 24 November 2019\u003c/li\u003e\n\u003cli\u003evan Manen M (1997) From meaning to method. Quali Health Research 7:345-369.\u003c/li\u003e\n\u003cli\u003ePolit DF, Beck CT (2022) Essentials of nursing research: Appraisal evidence for nursing practice, 10\u003csup\u003eth\u003c/sup\u003e edn. Wolters Kluwer, Philadelphia\u003c/li\u003e\n\u003cli\u003eLincoln Y, Guba EG (1985) Naturalistic inquiry. Sage, California.\u003c/li\u003e\n\u003cli\u003eRodgers BL, Cowles KV (1993) The qualitative research audit trail: A complex collection of documentation. Res Nurs Health 16:219\u0026ndash;226. https://doi.org/10.1002/nur.4770160309\u003c/li\u003e\n\u003cli\u003eSaldana J (2016) The coding manual for qualitative researchers, 3\u003csup\u003erd\u003c/sup\u003e edn. Sage, United Kingdom.\u003c/li\u003e\n\u003cli\u003evan Manen, M (1990) Researching lived experience: Human science for an action sensitive pedagogy. State University of New York Press, New York.\u003c/li\u003e\n\u003cli\u003eStreubert H, Carpenter D (2011) Qualitative research in nursing, 5\u003csup\u003eth\u003c/sup\u003e edn. Wolters Kluwer/Lippincott Williams \u0026amp; Wilkins, Philadelphia.\u003c/li\u003e\n\u003cli\u003eChan C, Ho A, Leung P, Chochinov H, Neimeyer R, Pang S, Tse D (2012) The blessings and the curses of filial piety on dignity at the end of life: Lived experience of Hong Kong Chinese adult children caregivers. J Ethnic Cul Div Soc Work 21:277-296. https://doi.org/10.1080/15313204.2012.729177\u003c/li\u003e\n\u003cli\u003eFischer S, Sauaia A, Min S, Kutner J (2012) Advance directive discussions: Lost in translation or lost opportunities?. J Palliat Med 15:86-92. https://doi.org/10.1089/jpm.2011.0328\u003c/li\u003e\n\u003cli\u003eBaker K, Robertson N (2008) Coping with caring for someone with dementia: Reviewing the literature about men. Aging Ment Health 12:413-422. https://doi.org/10.1080/13607860802224250\u003c/li\u003e\n\u003cli\u003eWang, K., Fang, Y., \u0026amp; Teo, S. (2011). The moderating effect of face values: Information sharing and initiative encouragement in China\u0026rsquo;s civil service. Inter J Cross Cul Manage 11:325-340. https://doi.org/10.1177/1470595811401649\u003c/li\u003e\n\u003cli\u003eBenites A, Rodin G, de Oliveira-Cardoso \u0026Eacute;, dos Santos M (2021) \u0026ldquo;You begin to give more value in life, in minutes, in seconds\u0026rdquo;: Spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil. Support Care Cancer 30:2631-2638. https://doi.org/10.1007/s00520-021-06712-w\u003c/li\u003e\n\u003cli\u003eRoc\u0026iacute;o L, Rojas E, Gonz\u0026aacute;lez M, Carre\u0026ntilde;o S, Diana C, G\u0026oacute;mez O (2017) Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process. Int J Palliat Nur, 23:332-339. https://doi.org/10.12968/ijpn.2017.23.7.332\u003c/li\u003e\n\u003cli\u003eUgalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: A qualitative study. Support Care Cancer 20:1175-1181. https://doi.org/10.1007/s00520-011-1194-9\u003c/li\u003e\n\u003cli\u003eIshii Y, Miyashita M, Sato K, Ozawa T (2012) A family\u0026rsquo;s difficulties in caring for a cancer patient at the end of life at home in Japan. J Pain Symptom Manage 44:552-562. https://doi.org/10.1016/j.jpainsymman.2011.10.011\u003c/li\u003e\n\u003cli\u003eTotman J, Pistrang N, Smith S, Hennessey S, Martin J (2015) \u0026lsquo;You only have one chance to get it right\u0026rsquo;: A qualitative study of relatives\u0026rsquo; experiences of caring at home for a family member with terminal cancer. Palliat Med 29:496-507. https://doi.org/10.1177/0269216314566840\u003c/li\u003e\n\u003cli\u003eSaleh F, O\u0026rsquo;Neill C (2018) The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain. Clinical Nurs Studies 6:57-71. https://doi.org/10.5430/cns.v6n3p57\u003c/li\u003e\n\u003cli\u003eOng H, Vaingankar J, Abdin E, Sambasivam R, Fauziana R, Tan M, Chong SA, Goveas RR, Chiam P C, Subramaniam M (2018) Resilience and burden in caregivers of older adults: Moderating and mediating effects of perceived social support. BMC Psych 18:1-9. https://doi.org/10.1186/s12888-018-1616-z\u003c/li\u003e\n\u003cli\u003ePan Y, Chen R, Yang D (2022) The relationship between filial piety and caregiver burden among adult children: A systematic review and meta-analysis. Geriatr Nurs 43:113-123. https://doi.org/10.1016/j.gerinurse.2021.10.024\u003c/li\u003e\n\u003cli\u003eGrant M, Sun V, Fujinami R, Sidhu R, Otis-Green S, Juarez G, Klein L, Ferrell B (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncol Nurs Forum 40:337-346. https://doi.org/10.1188/13.onf.337-346\u003c/li\u003e\n\u003cli\u003eDionne-Odom J, Demark-Wahnefried W, Taylor R, Rocque G, Azuero A, Acemgil A, Martin MY, Astin M, Ejem D, Kvale E, Heaton K, Pisu M, Partridge EE, Bakitas MA (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25:2437-2444. https://doi.org/10.1007/s00520-017-3650-7\u003c/li\u003e\n\u003cli\u003ePark SM, Kim YJ, Kim S, Choi JS, Lim H, Choi YS, Hong YS, Kim S, Heo DS, Kang KM, Jeong HS, Lee CG, Moon DH, Choi J, Kong S, Yun YH (2010) Impact of caregivers\u0026rsquo; unmet needs for supportive care on quality of terminal cancer care delivered and caregiver\u0026rsquo;s workforce performance. Support Care Cancer 18:699-706. https://doi.org/10.1007/s00520-009-0668-5\u003c/li\u003e\n\u003cli\u003eGuo J, Reblin M, Tay D, Ellington L, Beck A, Cloyes K (2021) Patterns of stress and support in social support networks of in-home hospice cancer family caregivers. J Soc Pers Relat 38:3121-3141. https://doi.org/10.1177/02654075211024743\u003c/li\u003e\n\u003cli\u003eUllrich A, Marx G, Bergelt C, Benze G, Zhang Y, Wowretzko F, Heine J, Dickel L, Nauck F, Bokemeyer C, Oechsle K (2020) Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: A prospective longitudinal study. Support Care Cancer 29:1303-1315. https://doi.org/10.1007/s00520-020-05565-z\u003c/li\u003e\n\u003cli\u003eNaganuma Y, Yamaoka K, Takahashi K (2021) Relationship between social cohesion and the care burden of primary family caregivers in central Tokyo, Japan. Health Science Reports 4:1-11. https://doi.org/10.1002/hsr2.238\u003c/li\u003e\n\u003cli\u003eKrishna L (2012) Best interests determination within the Singapore context. Nurs Ethics 19:787-799. https://doi.org/10.1177/0969733011433316\u003c/li\u003e\n\u003cli\u003eAng G, Zhang D, Lim K (2016) Differences in attitudes to end-of-life care among patients, relatives and healthcare professionals. Singapore Med J 57:22-28. https://doi.org/10.11622/smedj.2016008\u003c/li\u003e\n\u003cli\u003eSearight HR, Gafford J (2005) Cultural diversity at the end of life: Issues and guidelines for family physicians. Am Fam Physician 71:515-522.\u003c/li\u003e\n\u003cli\u003eNie X, Ye D, Wang Q, Manyande A, Yang L, Qiu H (2015) Poor-prognosis disclosure preference in cancer patient-caregiver dyads and its association with their quality of life and perceived stress: A cross-sectional survey in mainland China. Psychooncology 25:1099-1105. https://doi.org/10.1002/pon.4055\u003c/li\u003e\n\u003cli\u003eNi Y, Alraek T (2016) What circumstances lead to non-disclosure of cancer-related information in China? A qualitative study. Support Care Cancer 25:811-816. https://doi.org/10.1007/s00520-016-3464-z\u003c/li\u003e\n\u003cli\u003eLai D (2010) Filial piety, caregiving appraisal, and caregiving burden. Research Aging 32:200-223. https://doi.org/10.1177/0164027509351475\u003c/li\u003e\n\u003cli\u003eVigna P, de Castro I, Fumis R (2020) Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively. BMC Palliat Care 19:1-8. https://doi.org/10.1186/s12904-020-00585-2\u003c/li\u003e\n\u003cli\u003eArland T, Lin H (1994) Social change and the family in Taiwan. University of Chicago Press, Chicago.\u003c/li\u003e\n\u003cli\u003eChang L, Basnyat I (2016) Exploring family support for older Chinese Singaporean women in a Confucian society. Health Commun 32:603-611. https://doi.org/10.1080/10410236.2016.1146568\u003c/li\u003e\n\u003cli\u003eHong Q, Yu G (2018) The face view of China and foreign countries under cross-cultural communication. Theory Pract Language Studies 8:1324. https://doi.org/10.17507/tpls.0810.10\u003c/li\u003e\n\u003cli\u003eQi X (2011) Face: A Chinese concept in a global sociology. J Socio 47:279-295. https://doi.org/10.1177%2F1440783311407692\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":"Chinese, Family Caregiver, Palliative Care, End-of-Life, Cancer, Phenomenology","lastPublishedDoi":"10.21203/rs.3.rs-4934422/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4934422/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eThe Chinese community constitutes the largest demographic and faces the highest rates of cancer incidence in Singapore. Given this, palliative care plays a crucial role in supporting individuals, particularly those nearing the end of life, with family serving as their primary source of support. Many Chinese family caregivers in Singapore reported significant unmet needs in cancer care provision, with studies indicating that they often bear the brunt of caregiving responsibilities. Despite this, there has been a lack of research exploring the needs and perspectives of Chinese Singaporean family caregivers caring for terminally ill cancer patients at home. Thus, this study seeks to address this gap by investigating the lived experiences of Chinese Singaporean family caregivers providing end-of-life cancer care in a home setting.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eThis study employed a hermeneutic phenomenological approach, guided by the framework developed by van Manen (1990), to uncover the essential meaning of each participant's lived experience. In-depth, semi-structured virtual interviews were conducted face-to-face with ten Chinese Singaporean family caregivers. These caregivers shared their personal journeys of caring for a loved one with advanced cancer during their final stage of life at home. The interviews were audio recorded, and open-ended questions were used to facilitate discussion. Each interview lasted between thirty minutes to one hour. The researcher manually transcribed all audio recordings. Additionally, an external transcriber translated the interviews into written form to ensure accuracy and authenticity. The interview texts were then analysed and interpreted using the philosophical underpinnings rooted in phenomenology.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe attempts to identify meanings and make sense of the Chinese Singaporean\u0026rsquo; lived experience led to the development of two main themes and eight sub-themes. Under the primary theme of \u0026lsquo;experiences from caregiving\u0026rsquo; comprises the sub-themes, \u0026lsquo;being a caregiver\u0026rsquo;, \u0026lsquo;suffering\u0026rsquo;, and \u0026lsquo;well-being\u0026rsquo;, and the major theme of \u0026lsquo;expectations in caregiving\u0026rsquo;, encompasses the sub-themes, \u0026lsquo;caregiving support\u0026rsquo;, \u0026lsquo;decision-making\u0026rsquo;, \u0026lsquo;communication\u0026rsquo;, \u0026lsquo;spirituality\u0026rsquo; and \u0026lsquo;being a Chinese Singaporean\u0026rsquo;.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThe results of this study have several important implications for practice, policy, and future research to support the Chinese family caregivers to ease their burden of caring.\u003c/p\u003e","manuscriptTitle":"Exploring the Lived Experience of Chinese Family Caregivers Caring for End-Of-Life Cancer Patients at Home: A Phenomenological Study in Singapore","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-09-24 08:32:40","doi":"10.21203/rs.3.rs-4934422/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-11-29T16:32:21+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-11-28T17:36:44+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"280104441496904180464018488677519396373","date":"2024-11-08T13:54:31+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-10-05T13:19:09+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-10-05T13:18:04+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-08-25T23:40:08+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2024-08-18T17:54:22+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":"52456a1e-626f-427d-8b59-e2cb70435a25","owner":[],"postedDate":"September 24th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-01-10T01:38:09+00:00","versionOfRecord":[],"versionCreatedAt":"2024-09-24 08:32:40","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4934422","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4934422","identity":"rs-4934422","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}