Patients with terminal cancer require extensive care and support owing to the impact of their illness and the inevitability of death. In Chinese caregiving culture, the patient’s family primarily assumes the responsibility of providing care, requiring substantial physical, emotional, and financial investment. Within this structure, terminal cancer patients who depend on their families experience complex emotional and psychological responses that can significantly affect their overall mental state. However, the existing research has seldom explored the lived experiences and interpretations of patients with terminal cancer regarding their caregiving situations. Therefore, this study investigated how patients with terminal cancer perceive and make sense of their caregiving experiences. After receiving approval from the research ethics committee, this study included eight patients with terminal cancer. Data were collected through in-depth interviews and analyzed using a phenomenological approach. The results illustrate the contextual framework of being cared for and patients’ subjective experiences within this context. The caregiving context is shaped by three central themes: "fear of death," "anxiety over separation," and "helplessness due to incapacity," all of which underscores the inescapable reality of death and the dilemmas it imposes on both patients and their caregivers. These themes reveal the profound emotional struggles that arise when patients face mortality while dependent on others for care. Based on this caregiving context, patients’ experiences reflect two primary dualities: "body and mind" and "emotion and responsibility." These dualities highlight the internal conflicts experienced by patients as they navigate their caregiving journeys. Under the "reciprocal human sentiment interpretation model," caregiving is perceived as a cyclical exchange of "relationships and tangible resources" and a "mutual depletion of self and others," wherein both patients and caregivers endure emotional exhaustion and resource depletion. This ongoing cycle gradually erodes familial emotional bonds and practical resources, making caregiving an increasingly burdensome experience. In contrast, under the "inter-being interpretation model," patients reinterpret their caregiving experience in a way that allows them to reclaim their subjectivity. This model shifts the perception of caregiving from a dynamic of dependency and obligation to one of relational interconnectedness, enabling patients to find new meaning in their interactions with caregivers. In responding to caregiving circumstances, the patients exhibited several strategies to mitigate the negative effects of being cared for. These include "reducing resource consumption," where patients deliberately limit their care needs to lessen the burden on family members. Additionally, "attempting to care for their family," refers to patients providing emotional or symbolic support to caregivers to foster a sense of mutual contribution. Finally, "facing and bearing the situation together," describes patients actively engaging in shared coping strategies with their families to navigate caregiving challenges collectively. Through these interactions, patients attempt to maintain a balance between their own needs and the well-being of their caregivers, striving to preserve their dignity while minimizing caregiving-related stress. Based on these findings, this study provided several critical insights into the caregiving experiences of terminal cancer patients. First, there is a misalignment between the expected caregiving duty and authentic emotional experiences of both patients and caregivers, leading to emotional strain and psychological distress. Second, there is a need to preserve both the subjectivity of care recipients and the intersubjectivity of caregiving, ensuring that patients are not merely passive recipients of care but remain active participants in their own experience. Third, the divergent perspectives of the reciprocal human sentiment interpretation and inter-being interpretation models shape how patients position themselves within the caregiving process, influencing their emotional well-being and coping strategies. Finally, this study highlighted the importance of addressing caregiving and receiving care’s psychological and emotional dimensions. In clinical practice, healthcare professionals should acknowledge the complexity of caregiving dynamics and develop interventions supporting the well-being of patients and caregivers. Future research should explore caregiving experiences across different cultural contexts and examine ways to help patients reframe their caregiving experiences to promote dignity, autonomy, and relational well-being.
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