护理者

Two young children, being held by their parents, hold hands with each other

许许多多的人,在许许多多的层面上,受到肝脏疾病的影响。

作为肝病患者的护理者,您可能感同身受着您的挚爱经历的情绪:恐惧,孤立甚至愤怒。 加拿大肝脏基金会的工作之一,就是帮助你将这些消极情绪变成希望和力量。 在应对不同程度的疾病中,为了避免时常遇到的精疲力尽的情形,您不只要照顾好病人,也同样应该照顾好自己。 该页面上的信息,从预期到加拿大肝脏基金会提供的支持计划,都是专门为护理者而设计的。 想要求更多有关护理者的资源,或想了解更多现有的支援,请 请联系我们。

liver questions
您要做什么  
liver support services
支持服务  
tips for liver health
给您的提示  
liver health resources
其他资源  

您要做什么

身为照顾肝病患者的家庭成员或护理者,您可能需要扮演各种角色,这通常意味着承担身体和情感护理的双重责任。 这些责任包括:

  • 负责家务,如杂货店购物,准备饭菜,清理和管理财务
  • 帮助梳理,洗澡和穿衣
  • 管理就诊服药,包括保持就诊记录和准备药物
  • 留意肝脏疾病恶化和药物副作用的体征和症状
  • 安排就诊时间
  • 接送及陪伴患者去看医生
  • 了解肝脏疾病,代表您所护理的病人与医护人员和社会服务提供者进行沟通
  • 倾听和提供必要的情感支持
  • 在所有情况下为您所爱的人呼吁

Common questions and concerns for caregivers

As liver disease progresses, the scarring of the liver continues, and your loved one may develop symptoms and complications which may include:

  • Loss of appetite, nausea and vomiting, weight loss
  • A yellow discoloration of the skin and whites of the eyes (jaundice)
  • Itching (pruritus) which is primarily caused by retention of bile products in the skin
  • Fluid build-up and painful swelling of the legs (edema) and abdomen (ascites)
  • Confusion and other mental changes, potentially leading to coma
  • Swelling or rupture of veins in the esophagus from increased blood pressure in the blood vessels
  • Weakness

Even when complications develop, they can often be treated. Please discuss treatment options with your loved one’s healthcare provider.

Before the appointment:

  • List of all new symptoms (when it started and what it feels like) that you would like to discuss at the appointment.
  • Write down all of the medication side effects your loved one is experiencing, and ask the doctor how to manage them.
  • List of questions/concerns and prioritize them (place them in order of importance).
  • Ensure you know how to prepare your loved one for medical procedure appointments (e.g. food and fluid restrictions).
  • Help your loved one make a folder of all the essential medical information (medical history, test results, medication information, upcoming procedures, medical tips/recommendations etc.) and bring them to your appointments.
  • Make arrangements and plan for how your loved one will be getting to and from their appointments.
  • If you are unsure, call the office beforehand to confirm the date and time of your loved one’s appointment.

During the appointment:

  • Take note of what is being discussed in case your loved one forgets any of this information.
  • Let the healthcare provider know about the presence of symptoms and ask how they can be treated.
  • Ask for clarification of any medical terms that you don’t understand.
  • When your loved one is prescribed a medication, ask about what the drug is for and whether there are any side effects and how you can lessen them.
  • Ask for clarification and interpretation of all test results.

Questions to ask:

  • How will treatment affect my loved one’s daily life?
  • Is there a special diet my loved one should be following or any foods/drinks they should avoid?
  • How can we contact you in case we have any questions between now and the next appointment?
  • Is there anything else we can do at home to slow down the progression of the disease?
  • Are there any activities that can help my loved one stay strong? What activities should be avoided?
  • What are the chances for success with the treatment you’ve provided?
  • What are the support services available to us?

There are over 100 liver diseases: some that are caused by viruses (such as hepatitis A, B and C), some that are inherited (like hemochromatosis, Wilson disease) and others that are caused by lifestyle and the environment. If your loved one has viral hepatitis (hepatitis A, hepatitis B or hepatitis C), talk to your healthcare provider about prevention and getting immunized against hepatitis A and hepatitis B.

For more information on specific liver diseases and how to protect yourself, please read our liver diseases section.

If your child has liver disease, the treatment varies with the cause. In general, your child’s physician may prescribe a special baby formula as well as vitamin supplements. Some metabolic diseases, such as galactosemia, require specific diets or drug treatments. For some diseases, such as biliary atresia, surgery on the liver is required.

In many cases, childhood liver diseases can be managed or controlled through diet, medications or other interventions. If the liver is too damaged to function effectively, a liver transplant may be necessary during the first year of your baby’s life.

Please talk to your healthcare provider regarding the specific diet and treatments your child may require.

A yellow discolouration of the skin and whites of the eyes (jaundice) that does not disappear is a sign of ongoing liver disease and generally indicates severe liver problems. In an infant who appears to recover from a liver disorder, the return of jaundice is a sign of ongoing disease.

Viral infections and biliary atresia are extremely unlikely to affect more than one person in a family. Metabolic disorders of the liver are usually inherited and therefore may occur in more than one family member. Older children in the family should be checked for these diseases, and infants should be followed carefully after birth. Prenatal diagnosis is available for some of these disorders, and genetic counselling may be useful to families who have a history of hereditary liver disease.

For more information on specific liver diseases and to find which may be hereditary, please read our liver diseases section.

Caregiver holding hands


Tips for You

These helpful tips and recommendations were developed in part by people who have cared for those with liver disease.

Everyday tips

  • With new diagnoses, it’s important to do whatever it takes to get stabilized as soon as possible. This way, you can focus on what you need to do to change matters for the better.
  • Don’t be ashamed to ask for help with the role of caregiving. Seek out others who could possibly share the caregiving load with you in order to avoid burnout. This could be family members, neighbours, friends, or members of your social/religious circles. Consider weekly family meetings to keep your loved ones informed on important matters and to check in on how everyone is feeling. It’s also a great way to plan out special time for families to spend together.
  • Do not neglect your own needs, both emotional and physical. It is crucial to remember that you also need a break from the disease and the toll it can take on you. This includes continuing to do the things that bring you joy. The less neglected you feel, the better you are at helping your loved one achieve optimal health.
  • Knowledge is power. Read a lot and gain as much insight about your loved one’s condition as possible. In doing so, you become informed of the best ways to help them strive.
  • Give back to the community and volunteer for the Canadian Liver Foundation if you can.
  • Plan for the worst-case scenario but always hope for the best.

Emotional tips

  • Don’t lose hope. A positive mindset uncovers great change. Aim to take one day at a time and make the most out of every situation.
  • Understand that frustration placed on you by the one you are caring for is not purposeful or personal. The illness process takes a significant toll on one’s physical well-being, as well as their emotional well-being. Try your best to put yourself in their shoes.
  • Having a support network is vital for your own emotional wellbeing. The Canadian Liver Foundation is here to help you access resources like the Peer Support Network where you can connect with others who are going through the same experiences that you are.
  • Journal your thoughts and feelings. Don’t be ashamed to reflect on the things going on in your life. Addressing your issues is the first step towards finding a solution. Also, when journaling, use colour. Colour makes life seem much brighter.
  • Start a list of coping skills that you either have or are willing to adopt in order to deal with and work through any stressors that may come your way. Visit this website to add more coping strategies to your list!
  • Spending time with the one you’re caring for is extremely important. You might not be actively doing anything, but the fact that they have somebody there with them during such a vulnerable time could do wonders for them.
  • Aim to take one day at a time and make the most out of every situation. Do not put an end to doing the things that make you happy.

Medical tips

  • Ask your healthcare provider, employer, social assistance worker, social worker or someone in your social circle to help you find the resources you need.
  • Do not leave the doctor’s office until you are fully satisfied with your understanding of the information provided.

Finances and other assistance tips

  • If your financial circumstances change, rent and mortgage payments may become difficult to manage. If you think that your housing situation will be affected due to a change in income, check with your bank or financial advisor to see if they may be able to provide some short-term solutions for you and your family.
  • Many employers belong to an Employee Assistance Program (EAP) and provide free counselling services to employees. Contact your benefits advisor at your workplace for details on how to access this support.
  • If your loved one becomes very sick or has difficulty getting dressed, walking or bathing, you may be able to have a nurse or home care provider come to your home, so your loved one does not have to enter a hospital. Talk to your healthcare provider who can arrange home care services. A nurse may be able to arrange for other support to allow your loved one to stay at home.

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支持计划和服务

当某人最初被诊断患有肝脏疾病时,他们可能会有很多问题想问,关于他们的病情有,病情如何影响他们的生活方式,以及可能采取什么治疗或其他干预措施。 作为护理者,您对病人的病情可能有相同的疑问。 请记得,我们既可以为您,也可以为您的家人提供帮助。 全国帮助热线: 咨询热线提供了一个资源,令您和您的亲人在诊断之后有一个可以解难答疑的地方,帮助您更好地了解相关疾病,并为您提供所需的资源。 你可以致电 1-800-563 5483 , 星期一至五从9AM到5pm EST。 病友支持网络: 这是一个全国性病友网络,供您与他人交流及分享经验。 它由加拿大肝脏基金会组织,将加拿大与肝病相关的家庭联系一起 —- 家里有肝病患者的,家里有护理肝病患者的,家里曾被诊断为肝病的 —- 供您与有过相同经历的人相互交流。 如果您想与您所在地区的病友支持者建立联系,或者想加入病友支持网络,请致电全国帮助热线 1-800-563 5483 , 或发送电子邮件 Chinese@liver.ca

17岁的Matthew Ayuen在预定参加G2驾驶考试的那一天,驾驶考试成了他最不关心的事情 —– 他没有坐在方向盘后面,而是被送进手术室,在那里医生将他父亲肝脏的一部分移植到他的身体里。 在从最初诊断患有PSC到接受移植手术之间的充满压力的日子里,马修和他的家人参加了加拿大肝脏基金会的“护肝生活”教育讲座。 这些讲座使他们有机会与面对同样问题的其他病友和家庭互相联系。 现在,马修及其家人通过帮助提升肝脏研究及教育的筹款与意识,作出自己的贡献。 您正在寻求额外的支持,或者寻求回馈社区的方法吗? 了解更多关于 你可以帮忙的方法。

其他资源

在加拿大,所有药物在出售予病人或加入政府的药物资助计划之前,都必须通过药物审查过程。药物审查过程由药物生产商向加拿大卫生部递交申请表开始。之后,加拿大卫生部的科学家及外部专家会就药物的安全性、效用、品质及可能的好处及危险作出检测。当他们一致同意该药物安全有效时,便会予以核准并发出药物识别号码(Drug Identification Number,简称DIN),而药物生产商便可在加国出售该药物。 如果药物生产商希望其药物加入政府药物资助计划,当药物获加拿大卫生部批准后,生产商必须向共同药物审查署(Common Drug Review,简称CDR) 递交申请表。CDR会对药物作出审查,并建议该药物应否成为政府药物资助计划的资助药物之一。除魁省之外,所有省份及地区都参与CDR。当CDR提供建议后,各省的药物资助计划会自行决定是否将该药物加到其药物资助计划中。各省的药物资助计划毋须一定遵循CDR的建议,因为各省及地区会综合考虑其医疗系统的先后缓急需要及可用资源分配。
私人医疗保险或药物计划 如果您的公司提供私人医疗保险或药物计划,您可通过该计划为您支付药费。请向您的私人医疗保险或药物计划提供者查询您的药物是否获得资助。 公共资助药物计划 各省及地区都有其各自的规定。有些省份的药物资助计划为65岁或以上的人士或接受社会保障的人士提供药物补助。有些省份(如安省)为低收入人士提供支援。如想查询您所属省份的药物资助计划的详情,请联络您所属省份的卫生厅或加拿大卫生部。(请查阅「医疗系统指引」第13页的链接) 魁北克公共药物计划 在魁省,所有人都通过私人或政府药物资助计划获得处方药物资助。 各省和地区政府都为合格的团体提供药物福利计划。 有些是基于收入的普遍计划。 大多数人口群体都有特定的计划,这些计划可能需要对高昂的药物费用加大覆盖面。 这些群体包括老年人,社会援助的接受者,以及患有高毒品成本的疾病或病症的个人。 欲了解更多详情,请联系您所在省或地区的卫生保健部门,或点击下面的相应链接。 •阿尔伯塔省(处方药方案) • 不列颠哥伦比亚省(医药护理) •马尼托巴省(药典计划) •新不伦瑞克省 (处方药方案) •纽芬兰(制药服务) •西北地区(药物覆盖) • 新斯科舍省(医药护理) •努纳武特(药物覆盖) •安大略省(药物利益计划) • 爱德华王子岛(药物成本援助计划) •魁北克(处方药保险) •萨斯喀彻温省(药物计划) •育空(保险业) 制药公司 一些制药公司向无法负担医疗费用的患者提供药物,或者根据“体恤使用计划”向没有政府或私人保险的患者提供药物。 每个计划都有自己的资格条件。 请和你的医生谈谈,看看你是否有资格参加这样的项目。 可用于丙型肝炎治疗的患者援助计划Abbvie Care 1-844-471 2273 , – Holkira Pak(Ombivasvir / paritaprevir / ritonabir + dasabuvir) – Maviret(Glecaprevir / pibrentasvir) • Gilead Momentum HCV支持计划 1(855) 447-7977 – SOVALDI(Sofosbuvir) – EPCLUSA(Sofosbuvir / velpatasvir) – HARVONI(Ledipasvir / sofosbuvir) – VOSEVI(sofosbuvir / velpatasvir / voxilaprevir) •MerckCare丙型肝炎项目 1-866-872 5773 , – Zepatier(Grazoprevir / elbasvir) 可用于乙型肝炎治疗的患者援助计划Gilead Momentum HBV支持计划 1-888-453 8885 , – VEMLIDY(替诺福韦丙氨苯丙胺) 可用的原发性胆管炎治疗患者援助计划 •导航患者支持计划 1-844-628 4484 , – OCALIVA(二乙醇酸)
“知识即良药” (Knowledge is the Best Medicine,简称KiBM)计划可帮助您管理自己的健康,并可与您的医生或医疗团队共同合作,以安全及适当的方法管理您的药物。这个计划由加国一些主要的医疗机构资助,这些机构都相信一个对药物有认知的病人便是一个更健康的病人。 KIBM产品将使您和您的家人能够: •确保您保有最新的药物清单 •在您联络医疗系统时,知会您相关的药物需求 •轻松访问药物/健康相关信息 了解更多关于 ”知识即良药“,点击这里.
如果您或您所关爱的人想了解与某疾病相关的医疗服务或者支援信息,您可以採取行动确保您获得最佳的医疗协助。由加拿大健康慈善团体联合会出版的「医疗系统指引」可以助您: •了解医疗体系 •查找您需要的信息和服务 •与医生或医护人员交谈 •请求第二意见 •管理您的病情 •支付您的药物 •参加临床试验 •倡导并要求您所需的支持 要下载“健康指南”,点击这里。
加拿大胆道闭锁注册处(CBAR)是加拿大小儿肝脏病学研究组(CPHRG)和加拿大儿科外科医师协会(CAPS)之间的一个合作伙伴关系,这两个结构完善的加拿大网络一起参与胆道闭锁患儿的护理。 要查看加拿大胆道闭锁注册中心的患者和家长资源, 点击这里。