Department of Oncology, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, No. 321, Zhongshan Road, Nanjing, Jiangsu, 210008, China.
School of Nursing, Nanjing University of Chinese Medicine, No. 138, Xianlin Avenue, Qixia District, Nanjing City, Nanjing, Jiangsu, 210023, China.
BMC Palliat Care. 2024 Sep 27;23(1):230. doi: 10.1186/s12904-024-01559-4.
The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.
This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent.
A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).
Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.
临终癌症患者的家庭照顾者从医院过渡到家庭接受姑息治疗是一个复杂而具有挑战性的过程。这一阶段的护理不仅涉及患者的身心健康，还涉及家庭照顾者的角色适应和情感支持。为了更深入地了解这一过程中的各种体验和感受，我们进行了一项定性研究。
本研究采用描述性现象学研究方法。访谈的重点是临终癌症患者家庭照顾者在从医院到家庭姑息治疗过渡期间的具体体验、面临的挑战、获得的支持和应对策略。所有数据均严格保密，在征得参与者同意后进行录音和转录。
共有 15 名家庭照顾者参与。确定了四个主要主题和九个子主题：复杂的过渡过程（对不确定性的焦虑、对过渡的抵制）、护理连续性中断（出院指导不足、缺乏持续沟通机制）、出院后持续护理需求（家庭护理知识和技能、社会和情感支持、悲伤咨询和死亡教育的需求）以及个人成长和收获（增强应对能力、提高心理韧性）。
家庭照顾者在从医院过渡到家庭护理期间面临着许多情绪、认知、实践和社会支持方面的挑战。为了改善护理体验和生活质量，应提供适当的培训和支持，以更好地满足照顾者的需求。
