TED@Merck KGaA, Darmstadt, Germany
Scott Williams: The hidden role informal caregivers play in health care
斯科特·威廉姆斯: 医疗保健行业中“业余护工”的潜在角色
Filmed:
Readability: 5.2
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斯科特·威廉姆斯曾经是一位需要被照料的病人，现在却自己成为了照料别人的人。在本TED演讲中，威廉姆斯强调了那些“业余护工”所扮演角色之难能可贵。那些病人们的亲朋好友，出于无私的爱，为他们付出了许多。从病人的生活照料，到精神上的支持，再到对医疗健康的伸张，那些无偿的护理者构成了世界各地医疗健康与社会系统的无形的支柱。威廉姆斯说，没有他们，这些系统将会崩溃。他问：“我们怎么才能够保证大家能够知晓并认可这些护理者们对病人和社会的价值呢？”
Scott Williams - Patient advocate
Scott Williams thinks the modern health systems would cease to function without the crucial role played by caregivers. Full bio
Scott Williams thinks the modern health systems would cease to function without the crucial role played by caregivers. Full bio
Double-click the English transcript below to play the video.
00:12
Let's put the care back into health care.
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让我们将关爱重新带回医疗健康领域。
00:16
I've been working in the healthcare sector
for the last 15 years,
for the last 15 years,
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在过去的15年中，
我一直从事医疗护理行业，
我一直从事医疗护理行业，
将我吸引到这个行业的原因之一，
00:20
and one of the things
that drew me to this sector
that drew me to this sector
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其实是我们医疗护理系统中的
那个关爱的成分。
那个关爱的成分。
00:22
was my interest in the care component
of our healthcare systems --
of our healthcare systems --
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更具体的说，
00:27
more specifically,
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我被那些护理者所扮演的
宝贵角色深深吸引了。
宝贵角色深深吸引了。
00:28
to the invaluable role played by carers.
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00:32
Now, how many of you in this room
consider yourself a carer?
consider yourself a carer?
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现在，我想问在座的各位，
有多少人认为自己是一个“护理者”？
有多少人认为自己是一个“护理者”？
我的意思是，你们当中有多少人
认为自己在照顾着
认为自己在照顾着
00:38
By this, I mean how many of you
have cared for someone
have cared for someone
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被病痛折磨，或饱受伤痛
和残疾困扰的人？
和残疾困扰的人？
00:41
suffering from an illness,
injury or disability?
injury or disability?
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如果你们认为自己属于
这个范畴，请举手。
这个范畴，请举手。
00:44
Can you raise your hand
if this is the case?
if this is the case?
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00:49
About half of the room.
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在座的有一半都举起了手。
00:51
I want to thank all of you
who raised your hands
who raised your hands
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我想要谢谢举起手的诸位，
感谢你们作为一位
“护理者”所付出的时间，
“护理者”所付出的时间，
00:53
for the time that you've spent as a carer.
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你们所做的一切是非常难能可贵的。
00:55
What you do is extremely precious.
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00:59
I am a former cared-for patient myself.
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从前，我自己就是一位需要别人
来关照、护理的病人。
来关照、护理的病人。
01:02
When I was a teenager,
I suffered from Lyme disease
I suffered from Lyme disease
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我十几岁的时候患有莱姆病，
接受过18个月的抗生素治疗。
01:05
and underwent 18 months
of antibiotic treatment.
of antibiotic treatment.
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01:10
I was repeatedly misdiagnosed:
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那时候，我一次又一次地被误诊：
01:12
bacterial meningitis,
fibromyalgia, you name it.
fibromyalgia, you name it.
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我曾经被诊断为细菌性脑膜炎、
纤维肌痛等等。
纤维肌痛等等。
医生就是不能确诊我的病因。
01:16
They couldn't figure it out.
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01:19
And if I'm standing here
in front of you today,
in front of you today,
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我之所以还能够出现在你们面前，
全都是因为一名
“护工”的执着与付出，
“护工”的执着与付出，
01:22
it's because I owe my life
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我的生命都是他给予的。
01:24
to the stubbornness
and commitment of one carer.
and commitment of one carer.
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01:28
He did everything he could for me --
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他真的为我做了
力所能及的一切 ——
力所能及的一切 ——
他常常从一个治疗中心
开长途到另一个中心，
开长途到另一个中心，
01:30
driving long distances
from one treatment center to another,
from one treatment center to another,
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为我寻找着最好的治疗方案，
01:33
searching for the best option,
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01:36
and above all, never giving up,
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最重要的是，尽管他遭遇了种种困难，
面临着来自工作、生活的压力，
01:39
despite the difficulties he encountered,
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他从来、从来没有放弃。
01:41
including from a work
and quality-of-life perspective.
and quality-of-life perspective.
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01:44
That was my father.
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这位“护工”其实就是我的父亲。
我能够从当时的病痛中康复，
很大程度上都是因为我父亲的奉献。
很大程度上都是因为我父亲的奉献。
01:46
I recovered, and this is largely
thanks to his dedication.
thanks to his dedication.
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01:51
This experience turned me
into a patient advocate.
into a patient advocate.
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这段经历让我变成了
一个病人权益的维护者。
一个病人权益的维护者。
01:55
The closer I looked, the more I saw
carers providing the same kind of support
carers providing the same kind of support
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当我更仔细地审视病人们的生活时，
我越能够看到那些护理者们
我越能够看到那些护理者们
提供着与我父亲一样的支持。
02:00
that my father provided to me,
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我也越能够看到他们在医疗健康
系统中扮演着无比重要的角色。
系统中扮演着无比重要的角色。
02:02
and playing a crucial role
in the healthcare system.
in the healthcare system.
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02:06
I don't think it's an exaggeration to say
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我认为，丝毫不夸张地讲，
如果没有了像我父亲
一样的“业余”护工们，
一样的“业余”护工们，
02:09
that without informal carers like him,
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我们的医疗、健康、社会系统
02:11
our health and social systems
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都将面临着崩溃。
02:14
would crumble.
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02:16
And yet, they're largely
going unrecognized.
going unrecognized.
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但即使如此，这些人（的贡献）
却往往不为人所知。
却往往不为人所知。
02:20
I am now a long-distance
carer for my mother,
carer for my mother,
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目前，我一直在异地照料我的母亲，
02:24
who suffers from multiple
chronic conditions.
chronic conditions.
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她罹患着多种慢性疾病。
02:28
I understand, now more than ever,
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我现在愈发清晰地认识到，
那些护理者所面对的巨大需求。
02:31
the demands that caregivers face.
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02:34
With aging populations,
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面临着人口的老龄化、
经济的不稳定性、
02:37
economic instability,
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医疗健康系统所承担的压力、
02:38
healthcare system stress
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以及长期慢性疾病护理的需求增长，
02:40
and increased incidents
of long-term chronic care needs,
of long-term chronic care needs,
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02:44
the importance and demands
on family caregivers
on family caregivers
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源自于家庭的护理者
角色变得愈发重要，
角色变得愈发重要，
对于他们的需求也在日益增长。
02:47
are greater than ever.
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02:49
Carers all over the world
are sacrificing their own physical,
are sacrificing their own physical,
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来自全球各地的护理者
牺牲了自己的健康、
牺牲了自己的健康、
金钱和社交生活，
02:53
financial and psychosocial well-being
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为了给他们所爱的人提供照料。
02:56
to provide care for their loved ones.
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02:59
Carers have their own limits and needs,
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那些护理者们有自己的极限和需求，
倘若没有了足够的支持，
03:01
and in absence of adequate support,
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他们也很有可能会因不堪重负而崩溃。
03:04
many could be stretched
to the breaking point.
to the breaking point.
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那些曾被视为家庭生活中
私人的，无偿的护理者们，
私人的，无偿的护理者们，
03:07
Once seen as a personal
and private matter in family life,
and private matter in family life,
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现在已经在无形中形成了
03:12
unpaid caregiving has formed
the invisible backbone
the invisible backbone
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全球各地医疗社会系统的支柱。
03:15
of our health and social systems
all over the world.
all over the world.
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03:20
Many of these carers
are even in this room,
are even in this room,
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有许多护理者甚至就在我们当中。
正如刚才举手的那些人。
03:22
as we have just seen.
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03:25
Who are they, and how many are they?
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他们到底是谁？他们到底有多少人？
03:28
What are the challenges
that they are facing?
that they are facing?
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他们正在面临着哪些挑战？
而更重要的是，
我们如何才能保证他们在病人、
我们如何才能保证他们在病人、
03:30
And, above all, how can we make sure
that their value to patients,
that their value to patients,
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在我们的医疗保健系统
以及社会中的价值
以及社会中的价值
03:34
our healthcare system and society
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能够被知晓和认可呢？
03:36
is recognized?
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03:39
Anyone can be a carer, really:
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诚然，每个人都可以成为一名护理者：
03:42
a 15-year-old girl caring
for a parent with multiple sclerosis;
for a parent with multiple sclerosis;
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一名15岁的小女孩照顾着
患有多重硬化疾病的病人；
患有多重硬化疾病的病人；
03:47
a 40-year-old man juggling full-time work
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一个40岁的男人一边做着职工作，
一边要照顾他异地的家庭；
03:50
while caring for his family
who lives far away;
who lives far away;
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03:53
a 60-year-old man caring for his wife
who has terminal cancer;
who has terminal cancer;
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一位60岁的爷爷照顾着
他罹患晚期癌症的妻子；
他罹患晚期癌症的妻子；
03:58
or an 80-year-old woman
caring for her husband
caring for her husband
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亦或是一位80岁的老奶奶照顾着她
患有阿尔茨海默症
（俗称老年痴呆）的丈夫。
（俗称老年痴呆）的丈夫。
04:01
who has Alzheimer's disease.
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04:03
The things carers do
for their patients are varied.
for their patients are varied.
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护理者为病人们做出的事情或许不同，
他们或许是照料日常起居，
04:07
They provide personal care,
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比如帮助病人们更衣、
04:09
like getting someone dressed,
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喂食、
04:11
feeding them,
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如厕、
04:13
helping them to the bathroom,
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04:15
helping them move about.
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行动。
04:17
They also provide a significant
level of medical care,
level of medical care,
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他们也提供着重要的医疗护理，
因为护理者们通常比
病人们自己还要了解
病人们自己还要了解
04:20
because they often know a lot about
their loved one's condition and needs,
their loved one's condition and needs,
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他们的病情和需求，
04:25
sometimes better
than the patients themselves,
than the patients themselves,
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因为病人们可能会因为
自己的病症而失去信心或感到困惑。
自己的病症而失去信心或感到困惑。
04:28
who may be paralyzed
or confused by their diagnosis.
or confused by their diagnosis.
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04:33
In those situations,
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在这种情况中，
04:35
carers are also advocates for the patient.
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护理者们又是他们的代言人。
04:40
Also of critical importance
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另外还有不可忽视的一点，
04:43
is the fact that carers
also provide emotional support.
also provide emotional support.
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就是护理者们是病人们的精神支柱，
04:48
They organize doctor's appointments,
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他们安排与医生的会诊，
04:51
they manage finances,
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管理着家庭财务，
也需要与日常家务打交道。
04:52
and they also deal
with daily household tasks.
with daily household tasks.
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04:57
These challenges are challenges
that we can't ignore.
that we can't ignore.
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他们所面临的这些挑战
是我们不能忽视的。
是我们不能忽视的。
05:00
There are currently
more than 100 million carers
more than 100 million carers
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在欧洲，目前有一亿的护理者，
提供着百分之八十的护理工作。
05:04
providing 80 percent
of care across Europe.
of care across Europe.
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05:08
And even if these numbers are impressive,
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尽管这样的数字已经十分可观，
但因为对他们的忽视，
这个数字仍然很有可能被低估了。
这个数字仍然很有可能被低估了。
05:10
they're most likely underestimated,
given the lack of recognition of carers.
given the lack of recognition of carers.
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正如我们刚刚所看到的，
05:15
As we have just seen,
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在座的很多人
也不确定自己是否够格，
也不确定自己是否够格，
05:16
many of you in this room weren't sure
if you could be qualified
if you could be qualified
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或者自己是否能被算为护理人。
05:20
or considered to be a carer.
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你们很多人或许觉得
我指的是一位护士，
我指的是一位护士，
05:22
Many of you probably thought
I was referring to a nurse
I was referring to a nurse
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或者是其他在医疗健康界的职业。
05:24
or some other healthcare professional.
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05:27
Also stunning
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同样令人震撼的是，
这些护理者为我们的社会
带来的巨大福利。
带来的巨大福利。
05:29
are the benefits that carers
bring to our societies.
bring to our societies.
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我想给你们一个2015年
发生在澳大利亚的例子。
发生在澳大利亚的例子。
05:32
I want to give you just one example
from Australia in 2015.
from Australia in 2015.
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05:37
The annual value
provided by informal carers
provided by informal carers
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根据评估，业余护工在一年中，
为那些患有精神疾病的人
提供的帮扶
提供的帮扶
05:40
to those suffering from mental illness
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具有132亿澳元的价值。
05:43
was evaluated at 13.2 billion
Australian dollars.
Australian dollars.
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05:48
This is nearly two times
what the Australian government spends
what the Australian government spends
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这几乎是澳大利亚政府
在心理健康服务上
在心理健康服务上
花费的两倍。
05:51
on mental health services annually.
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这些数字，
05:53
These numbers, among others,
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体现出倘若明天这些
护理者们停止了工作，
护理者们停止了工作，
05:56
demonstrate that if carers
were to stop caring tomorrow,
were to stop caring tomorrow,
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我们的健康、医疗
与社会系统将会瘫痪。
与社会系统将会瘫痪。
05:59
our health and social systems
would crumble.
would crumble.
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06:04
And while the importance
of these millions of silent carers
of these millions of silent carers
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虽然这些千百万的幕后护理者的
重要性不可否认，
06:06
cannot be denied,
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06:08
they've largely been unnoticed
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他们却常常被政府、
被医疗健康系统
06:10
by governments, healthcare systems
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和私营企业忽视。
06:13
and private entities.
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06:17
In addition, carers are facing
enormous personal challenges.
enormous personal challenges.
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除此之外，护理者们面临着
巨大的个人挑战。
巨大的个人挑战。
06:21
Many carers face higher costs
and can face financial difficulties,
and can face financial difficulties,
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很多护理者们面临着
更高的支出以及经济困难，
更高的支出以及经济困难，
因为他们可能无法进行全职工作，
06:25
given the fact that they may not
be able to work full time
be able to work full time
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或者甚至都不能工作。
06:28
or they may not be able
to hold down a job altogether.
to hold down a job altogether.
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06:32
Many studies have shown
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很多研究表明，
护理者们为了照顾他们所爱的人，
06:33
that often carers sacrifice
their own health and well-being
their own health and well-being
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牺牲了自己的健康和幸福。
06:36
in order to care for their loved ones.
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06:39
Many carers spend so much time
caring for their loved ones
caring for their loved ones
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许多的护理者们在
家庭关系上可能会出现隔阂，
家庭关系上可能会出现隔阂，
因为他们为自己所爱的人
付出了那么多时间。
付出了那么多时间。
06:43
that often their family
and their relationships can suffer.
and their relationships can suffer.
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06:46
Many carers report that often,
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许多护理者们表示，
在职场，他们的雇主
常常没有足够的政策
常常没有足够的政策
06:48
their employers don't have
adequate policies in place
adequate policies in place
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来支持他们。
06:51
to support them.
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06:53
There has been improvement, though,
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好在情况已经有了改善，
全世界的护理者们都在
慢慢地被世人所知。
慢慢地被世人所知。
06:54
in the recognition
of carers around the world.
of carers around the world.
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06:57
Just a few years ago,
an umbrella organization
an umbrella organization
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就在几年前，一个名叫
国际护理者联盟组织（IACO）的
国际护理者联盟组织（IACO）的
联合机构被建立了起来，
07:00
called the International Alliance
of Carer Organizations, or IACO,
of Carer Organizations, or IACO,
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将全球各地的护理者们团结在一起，
07:04
was formed to bring together
carer groups from all over the world,
carer groups from all over the world,
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提供战略性方向、
07:08
to provide strategic direction,
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促进信息共享，
07:10
facilitate information sharing,
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以及在国际舞台上
伸张护理者们的权益。
伸张护理者们的权益。
07:12
as well as actively advocate
for carers on an international level.
for carers on an international level.
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07:17
Private entities are also starting
to recognize the situation of carers.
to recognize the situation of carers.
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私人企业也开始
重视护理者们的情况。
重视护理者们的情况。
07:21
I am proud that my personal engagement
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我为我个人参与到照理者这个问题
所付出的热心而感到自豪，
07:24
and enthusiasm towards
this topic of carers
this topic of carers
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也在我自己的工作单位得到响应。
07:26
found an echo in my own workplace.
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07:29
My company is committed to this cause
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我的公司对这个问题做出承诺，
并为其员工以及整体社会开发出了
07:32
and has developed
an unprecedented framework
an unprecedented framework
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一个史无前例的构架。
07:34
for its employees and society as a whole.
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07:38
The objective is to empower carers
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目标是要让照理者有能力
来改善他们自己的健康和生计，
07:40
to improve their own health and well-being
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并让他们在生活中实现更好的平衡。
07:43
and bring about a greater
balance to their lives.
balance to their lives.
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07:46
Nevertheless, much more needs to be done
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不过这还远远不足以
完善这些相对孤立的计划方案。
07:50
to complement these relatively
isolated initiatives.
isolated initiatives.
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07:54
Our societies are facing
increased health pressures,
increased health pressures,
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我们的社会正在面临
越来越大的健康压力，
越来越大的健康压力，
包括人口老龄化、
07:56
including aging populations,
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癌症和慢性病案例的增多、
07:59
increased incidence of cancer
and chronic conditions,
and chronic conditions,
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普遍的不平等，
08:02
widespread inequality,
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及许多其他状况。
08:04
amongst many others.
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08:06
To confront these challenges,
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若要对抗这些挑战，
政策制订者不能单单
关注传统健康护理的途径
关注传统健康护理的途径
08:08
policymakers must look beyond
traditional healthcare pathways
traditional healthcare pathways
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以及雇佣政策，
08:12
and employment policies
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08:14
and recognize that informal care
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他们要承认非正式护理
会形成持续护理。
08:16
will continue to form the bedrock of care.
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08:21
Caring for someone should be a choice
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照顾某个人，应该是一种选择，
08:24
and should be done without putting
one's own well-being in the balance.
one's own well-being in the balance.
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而且即便要做，也不应该以
自己的切身利益为代价。
自己的切身利益为代价。
08:31
But to really put the care
back into health care,
back into health care,
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但如果要真的让照顾
回归到健康护理当中，
回归到健康护理当中，
08:35
what's needed is a deep,
societal, structural change.
societal, structural change.
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需要的是社会结构上的深刻改变。
08:42
And this can only happen
through a change in mindset.
through a change in mindset.
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若要实现，必定要在心态上做改变。
08:45
And this can start today.
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而这种改变此时此刻就可以发生。
08:48
Today, we can plant the seed for a change
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今天，我们能种下改变的种子，
为了全世界数百万的护理者。
08:51
for millions of carers around the world.
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08:53
Here's what I want to suggest:
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我想提出倡议：
08:56
when you go home today
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今天你回家时，
08:58
or to the office tomorrow morning,
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或是明天早上到办公室时，
拥抱一位护理者。
09:00
embrace a carer.
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09:03
Thank them,
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谢谢他们，
09:04
offer him or her a bit of help,
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提供他或她一点协助，
09:07
maybe even volunteer as a carer yourself
for a couple hours a week.
for a couple hours a week.
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也许自己每周能花上几小时
去当护理志愿者。
去当护理志愿者。
09:12
If carers around the world
felt better recognized,
felt better recognized,
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若全世界护理者
都能感受到他们的贡献被认可，
都能感受到他们的贡献被认可，
不仅仅他们自己的健康、
利益和满足感
利益和满足感
09:14
it would not only improve
their own health and well-being
their own health and well-being
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可以获得改善，
09:17
and sense of fulfillment,
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被他们所照顾的人的
生活也能够获得改善。
生活也能够获得改善。
09:19
but it would also improve the lives
of those that they're caring for.
of those that they're caring for.
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09:23
Let's care more.
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多关心他们一些吧。
09:25
Thank you.
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谢谢。
（掌声）
09:26
(Applause)
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Translated by Echo Sun
ABOUT THE SPEAKER
Scott Williams - Patient advocateScott Williams thinks the modern health systems would cease to function without the crucial role played by caregivers.
Why you should listen
Scott Williams is currently Vice President, Head of Global Patient Advocacy and Strategic Partnerships at Merck. He has long been active
in health advocacy, working in the past, among others, for the American Cancer Society’s Cancer Action Network, and for the Men’s Health Network. He studied Political Science at Moravian College in Bethlehem, Pennsylvania, and obtained a Masters in Public Administration from American University in Washington, DC. During a particularly difficult time in his life, he had significant health issues, his eyes were opened to the importance of the role of caregivers in our health systems, and how that role is often not recognized. With support from Merck leadership, he has been working on the development of “Embracing Carers” a global movement that recognizes the pivotal role of caregivers in the healthcare ecosystem.
Scott Williams | Speaker | TED.com