"我做过的最好,最困难的事情":息治疗和临终关怀家庭护理人员的复杂经历
Hannah Rachiele1, Kathryn Levy1,2, Gina Schuster1
1Research Department, Hospice & Palliative Care Buffalo, Cheektowaga, NY, USA.
The American journal of hospice & palliative care
|February 5, 2026
概括
照顾患有严重疾病的亲人给家庭护理人员带来了复杂的,往往相互矛盾的情绪. 这项研究探讨了非正式照顾者的负担和好处,揭示了超越负面影响的多维体验.
科学领域:
- 老年学是一门学科.
- 心理学 心理学 心理学
- 社会学 社会学 社会学
背景情况:
- 照顾绝症或慢性病患者涉及到独特的挑战.
- 以前的研究往往侧重于负面影响,但最近的文献表明更复杂的经验.
研究的目的:
- 探索严重的,限制生命的疾病患者的非正式家庭护理人员面临的挑战和利益的范围.
- 为了更深入地了解护理经验的多维性质.
主要方法:
- 这项定性研究涉及纽约州18名非正式家庭照顾者.
- 在参与者的住所进行的半结构面试.
- 带有共识的定性研究组件的感应性专题分析.
主要成果:
- 出现了四个主要主题:护理人员的负担,护理的导航,积极因素和关系的演变.
- 在采访中发现了认知失调的一个潜在主题.
- 照顾者会经历复杂而往往矛盾的感受.
结论:
- 绝症患者的家庭护理人员经历了护理的二元性,包括挑战和好处.
- 临床医生应该在预期的负面影响之外探索这些复杂的情绪.
- 研究结果强调,需要对非正式照顾者的经验有细微的了解.
相关概念视频
Restorative Care
Restorative care is provided once a patient has been discharged from a healthcare facility and requires additional services. The additional services include home care, rehabilitation programs, and extended care. Restorative care centers help the patient regain their previous level of functioning or acquire a new level of functioning due to the incapacitating effects of a disease or a disability. It aims to assist patients in enhancing their quality of life by encouraging independence,...
Continuing Care
Continuing care describes the variety of health, personal, and social services provided over a prolonged period. The need for continuing care is increasing because people are living longer. Many people do not have families or others to care for them. Continuing care is mainly for patients who are disabled, functionally dependent, or suffering from a terminal disease. It is available within institutional settings or in homes. Examples include nursing centers or facilities, assisted living,...
Documentation in Long-Term and Home Healthcare Setting
Documentation in long-term care facilities and home healthcare settings is crucial for ensuring continuous, coordinated, and comprehensive care for patients. Each setting has its specific documentation processes and tools:
Long-Term Care Facilities
Long-Term Care Facilities
Ethical Issues
Nurses are essential in patient care, upholding the ethical principles of their profession and effectively navigating ethical dilemmas. Neglecting ethical issues can lead to inadequate patient care, compromised therapeutic relationships, and moral distress among healthcare workers.
Ethical Concerns in Healthcare:
Ethical Concerns in Healthcare:
Ethical Dilemmas II
Resolving an ethical dilemma in healthcare involves a systematic approach that considers every aspect of the issue, respecting both the patient's needs and values and the healthcare professional's ethical obligations. Here are potential steps to resolve an ethical dilemma:
Kubler Ross's Stages of Dying
Elisabeth Kübler-Ross significantly advanced psychology's understanding of the process of dying with her influential book, On Death and Dying (1969). She focused on studying terminally ill individuals and outlined five stages commonly experienced when coping with death: denial, anger, bargaining, depression, and acceptance.
In denial, individuals reject the reality of their condition, often thinking, "This isn't true; I feel fine," as a way to protect themselves from emotional distress. Anger...
In denial, individuals reject the reality of their condition, often thinking, "This isn't true; I feel fine," as a way to protect themselves from emotional distress. Anger...
