Berry Leonard L, Dalwadi Shraddha Mahesh, Jacobson Joseph O
Texas A&M University, College Station, TX; Institute for Healthcare Improvement, Cambridge; and Dana-Farber Cancer Institute and Harvard Medical School, Boston, MA.
J Oncol Pract. 2017 Jan;13(1):35-41. doi: 10.1200/JOP.2016.017913. Epub 2016 Dec 20.
Patients with cancer who live at home often require help with activities of daily living, basic medical care (eg, injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient's family. These family caregivers themselves require support so that they can be effective and maintain their own well-being while caring for the patient with cancer. Research shows that support for caregivers contributes to achieving these goals. We propose a four-part framework for supporting family caregivers: (1) assess caregivers' needs using formal measures, just as the cancer patient's own needs are assessed, (2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home, (3) empower caregivers to become full-fledged members of the patient's cancer team, all working toward common goals, and (4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal. Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic cancer care.
在家中生活的癌症患者通常在日常生活活动、基本医疗护理(如注射)、社会需求以及患者权益维护等方面需要帮助。大部分此类支持来自亲密照护者,通常是患者的家庭成员。这些家庭照护者自身也需要支持,以便他们能够有效履行职责,并在照顾癌症患者的同时维持自身的幸福安康。研究表明,对照护者的支持有助于实现这些目标。我们提出一个支持家庭照护者的四部分框架:(1)像评估癌症患者自身需求一样,使用正式方法评估照护者的需求;(2)针对照护者的照护角色进行教育,最显著的是,对癌症患者在家中所需的低层次医疗支持进行培训;(3)使照护者能够成为患者癌症治疗团队的正式成员,所有人朝着共同目标努力;(4)积极协助照护者履行职责,使他们保持掌控感和自我效能感, 而不是在没有足够资源可用的情况下不得不应对迫在眉睫的医疗危机。对家庭照护者的资金支持需要重新聚焦于患者 - 照护者二元组的整体幸福安康,而不仅仅是患者。这将需要在报销方面进行范式转变,以认识到全面癌症护理的必要性。