TED@Merck KGaA, Darmstadt, Germany
Scott Williams: The hidden role informal caregivers play in health care
Skot Vilijams (Scott Williams): Skrivena uloga koju neformalni negovatelji imaju u zdravstvu
Filmed:
Readability: 5.2
1,142,175 views
Nekada pacijent koga su negovali, a sada negovatelj, Skot Vilijams naglašava dragocenu ulogu neformalnih negovatelja - onih prijatelja i rođaka koji su se iz ljubavi svojski trudili radi pacijenata sa problemima. Od lične nege do pravne i emotivne podrške, neplaćeni negovatelji čine srž zdravstvenog i socijalnog sistema širom sveta, kaže Vilijams - i bez njih, ovi sistemi bi propali. „Kako možemo da obezbedimo da vrednost koju pružaju pacijentima i društvu bude priznata?“ on pita.
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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Hajde da zdravstvenu negu
vratimo zdravstvu.
vratimo zdravstvu.
Već 15 godina radim u zdravstvu,
00:16
I've been working in the healthcare sector
for the last 15 years,
for the last 15 years,
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00:20
and one of the things
that drew me to this sector
that drew me to this sector
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i ono što me je privuklo ovom sektoru
00:22
was my interest in the care component
of our healthcare systems --
of our healthcare systems --
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bila je komponenta nege
u sistemu zdravstva
u sistemu zdravstva
00:27
more specifically,
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preciznije, dragocena uloga
koju imaju negovatelji.
koju imaju negovatelji.
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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Sad, koliko vas u ovoj prostoriji
sebe smatra negovateljem?
sebe smatra negovateljem?
00:38
By this, I mean how many of you
have cared for someone
have cared for someone
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Ovim mislim, koliko vas je brinulo o nekom
ko je bolestan, povređen ili invalid?
00:41
suffering from an illness,
injury or disability?
injury or disability?
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00:44
Can you raise your hand
if this is the case?
if this is the case?
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Možete li podići ruku ako jeste?
00:49
About half of the room.
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Oko polovina vas ovde.
Želim da zahvalim svima vama
koji ste podigli ruku
koji ste podigli ruku
00:51
I want to thank all of you
who raised your hands
who raised your hands
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00:53
for the time that you've spent as a carer.
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zbog vremena
koje ste proveli kao negovatelji.
koje ste proveli kao negovatelji.
Ono što radite je izuzetno dragoceno.
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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Ja sam bio pacijent koga su negovali.
Kada sam bio tinejdžer,
bolovao sam od lajmske bolesti
bolovao sam od lajmske bolesti
01:02
When I was a teenager,
I suffered from Lyme disease
I suffered from Lyme disease
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i 18 meseci primao antibiotike.
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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Iznova su mi davali pogrešnu dijagnozu:
bakterijski meningitis, fibromialgija,
štagod vam padne na pamet.
štagod vam padne na pamet.
01:12
bacterial meningitis,
fibromyalgia, you name it.
fibromyalgia, you name it.
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Nisu mogli da pronađu od čega bolujem.
01:16
They couldn't figure it out.
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I danas stojim ovde pred vama,
01:19
And if I'm standing here
in front of you today,
in front of you today,
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01:22
it's because I owe my life
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jer svoj život dugujem
01:24
to the stubbornness
and commitment of one carer.
and commitment of one carer.
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upornosti i posvećenosti
jednog negovatelja.
jednog negovatelja.
01:28
He did everything he could for me --
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Za mene je uradio sve što je mogao,
01:30
driving long distances
from one treatment center to another,
from one treatment center to another,
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vozio me kilometrima od jednog
zdravstvenog centra do drugog,
zdravstvenog centra do drugog,
01:33
searching for the best option,
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tragao za najboljom opcijom,
a iznad svega, nikada nije odustao,
01:36
and above all, never giving up,
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01:39
despite the difficulties he encountered,
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uprkos teškoćama na koje je nailazio,
kako u pogledu posla,
tako i kvaliteta života.
tako i kvaliteta života.
01:41
including from a work
and quality-of-life perspective.
and quality-of-life perspective.
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On je moj otac.
01:44
That was my father.
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01:46
I recovered, and this is largely
thanks to his dedication.
thanks to his dedication.
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Oporavio sam se, i to najviše
zahvaljujući njegovoj posvećenosti.
zahvaljujući njegovoj posvećenosti.
Ovo iskustvo me je pretvorilo
u advokata za pacijente.
u advokata za pacijente.
01:51
This experience turned me
into a patient advocate.
into a patient advocate.
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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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Što sam pažljivije posmatrao,
više sam zapažao
negovatelje koji pružaju istu podršku
negovatelje koji pružaju istu podršku
02:00
that my father provided to me,
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koju je moj otac meni dao,
02:02
and playing a crucial role
in the healthcare system.
in the healthcare system.
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i koji igraju krucijalnu ulogu
u zdravstvenom sistemu.
u zdravstvenom sistemu.
02:06
I don't think it's an exaggeration to say
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Bez preterivanja ću reći
02:09
that without informal carers like him,
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da bez neformalnih negovatelja
kao što je on
kao što je on
02:11
our health and social systems
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naši zdravstveni i socijalni sistemi
02:14
would crumble.
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bi propali.
02:16
And yet, they're largely
going unrecognized.
going unrecognized.
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A opet, njima se u velikoj meri
ne odaje priznanje.
ne odaje priznanje.
02:20
I am now a long-distance
carer for my mother,
carer for my mother,
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Ja sada na daljinu brinem o svojoj majci,
02:24
who suffers from multiple
chronic conditions.
chronic conditions.
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koja boluje od više hroničnih bolesti.
02:28
I understand, now more than ever,
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Sada više nego ikada razumem,
02:31
the demands that caregivers face.
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zahteve sa kojima
se suočavaju negovatelji.
se suočavaju negovatelji.
02:34
With aging populations,
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Uz populaciju koja stari,
02:37
economic instability,
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ekonomsku nestabilnost,
02:38
healthcare system stress
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stres u zdravstvenom sistemu
02:40
and increased incidents
of long-term chronic care needs,
of long-term chronic care needs,
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i sve više potreba
u dugoročnoj hroničnoj nezi,
u dugoročnoj hroničnoj nezi,
02:44
the importance and demands
on family caregivers
on family caregivers
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važnost i zahtevi stavljeni
pred porodične negovatelje
pred porodične negovatelje
02:47
are greater than ever.
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su veći nego ikada.
02:49
Carers all over the world
are sacrificing their own physical,
are sacrificing their own physical,
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Negovatelji širom sveta
žrtvuju svoju fizičku,
žrtvuju svoju fizičku,
02:53
financial and psychosocial well-being
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finansijsku i psihosocijalnu dobrobit
kako bi pružili negu onima koje vole.
02:56
to provide care for their loved ones.
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Negovatelji imaju svoja sopstvena
ograničenja i potrebe,
ograničenja i potrebe,
02:59
Carers have their own limits and needs,
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03:01
and in absence of adequate support,
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a u odsustvu adekvatne podrške,
03:04
many could be stretched
to the breaking point.
to the breaking point.
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mnogi od njih bi došli do tačke pucanja.
03:07
Once seen as a personal
and private matter in family life,
and private matter in family life,
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Kada se ovo sagleda
kao lična i privatna stvar porodice,
kao lična i privatna stvar porodice,
03:12
unpaid caregiving has formed
the invisible backbone
the invisible backbone
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neplaćena nega stvara nevidljivu srž
03:15
of our health and social systems
all over the world.
all over the world.
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našeg zdravstvenog
i socijalnog sistema širom sveta.
i socijalnog sistema širom sveta.
03:20
Many of these carers
are even in this room,
are even in this room,
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Mnogi od ovih negovatelja
su čak u ovoj prostoriji,
su čak u ovoj prostoriji,
03:22
as we have just seen.
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kao što smo upravo videli.
03:25
Who are they, and how many are they?
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Ko su oni i koliko ih ima?
03:28
What are the challenges
that they are facing?
that they are facing?
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Sa kojim izazovima se oni suočavaju?
03:30
And, above all, how can we make sure
that their value to patients,
that their value to patients,
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A, iznad svega, kako možemo da obezbedimo
da vrednost koju pružaju pacijentima,
da vrednost koju pružaju pacijentima,
03:34
our healthcare system and society
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našem zdravstvenom sistemu i društvu
03:36
is recognized?
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bude priznata?
03:39
Anyone can be a carer, really:
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Svako može biti negovatelj, zaista:
03:42
a 15-year-old girl caring
for a parent with multiple sclerosis;
for a parent with multiple sclerosis;
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15-godišnja devojčica koja brine
o roditelju obolelom od multiple skleroze;
o roditelju obolelom od multiple skleroze;
03:47
a 40-year-old man juggling full-time work
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40-godišnji muškarac koji žonglira
između stalnog posla
između stalnog posla
03:50
while caring for his family
who lives far away;
who lives far away;
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i brige o svojoj porodici
koja živi daleko;
koja živi daleko;
03:53
a 60-year-old man caring for his wife
who has terminal cancer;
who has terminal cancer;
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60-godišnji muškarac koji brine
o svojoj ženi sa neizlečivim kancerom
o svojoj ženi sa neizlečivim kancerom
03:58
or an 80-year-old woman
caring for her husband
caring for her husband
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ili 80-godišnja žena
koja brine o svom mužu
koja brine o svom mužu
04:01
who has Alzheimer's disease.
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koji ima Alchajmerovu bolest.
04:03
The things carers do
for their patients are varied.
for their patients are varied.
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Različite su stvari koje negovatelji
rade za svoje pacijente.
rade za svoje pacijente.
04:07
They provide personal care,
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Oni pružaju ličnu negu,
04:09
like getting someone dressed,
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kao što je oblačenje,
04:11
feeding them,
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hranjenje,
04:13
helping them to the bathroom,
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pomoć pri odlasku u toalet,
04:15
helping them move about.
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pomoć pri kretanju.
04:17
They also provide a significant
level of medical care,
level of medical care,
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Oni takođe pružaju
značajan nivo medicinske nege,
značajan nivo medicinske nege,
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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jer obično znaju dosta
o stanju i potrebama svojih najbližih,
o stanju i potrebama svojih najbližih,
04:25
sometimes better
than the patients themselves,
than the patients themselves,
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ponekad znaju bolje od samih pacijenata,
04:28
who may be paralyzed
or confused by their diagnosis.
or confused by their diagnosis.
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koji mogu biti paralizovani
ili zbunjeni svojom dijagnozom.
ili zbunjeni svojom dijagnozom.
04:33
In those situations,
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U takvim situacijama
negovatelji su i advokati pacijenata.
04:35
carers are also advocates for the patient.
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Takođe, od presudne je važnosti
04:40
Also of critical importance
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04:43
is the fact that carers
also provide emotional support.
also provide emotional support.
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činjenica da negovatelji pružaju
i emotivnu podršku.
i emotivnu podršku.
04:48
They organize doctor's appointments,
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Oni organizuju odlaske kod lekara,
04:51
they manage finances,
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vode finansije,
04:52
and they also deal
with daily household tasks.
with daily household tasks.
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a bave se i dnevnim kućnim poslovima.
04:57
These challenges are challenges
that we can't ignore.
that we can't ignore.
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Ovi izazovi su izazovi
koje ne možemo da ignorišemo.
koje ne možemo da ignorišemo.
05:00
There are currently
more than 100 million carers
more than 100 million carers
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Trenutno ima više
od 100 miliona negovatelja
od 100 miliona negovatelja
05:04
providing 80 percent
of care across Europe.
of care across Europe.
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koji obezbeđuju
80 odsto nege širom Evrope.
80 odsto nege širom Evrope.
05:08
And even if these numbers are impressive,
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Iako su ove brojke impresivne,
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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oni su najverovatnije potcenjeni, shodno
nepostojanju priznanja za negovatelje.
nepostojanju priznanja za negovatelje.
05:15
As we have just seen,
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Kao što smo upravo videli,
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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mnogi od vas u ovoj prostoriji
nisu bili sigurni da li ispunjavaju uslove
nisu bili sigurni da li ispunjavaju uslove
05:20
or considered to be a carer.
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i da li se mogu smatrati negovateljima.
05:22
Many of you probably thought
I was referring to a nurse
I was referring to a nurse
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Mnogi od vas su verovatno pomislili
da govorim o medicinskim sestrama
da govorim o medicinskim sestrama
05:24
or some other healthcare professional.
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ili nekom drugom zdravstvenom stručnjaku.
Takođe su iznenađujuće koristi
05:27
Also stunning
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05:29
are the benefits that carers
bring to our societies.
bring to our societies.
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koje negovatelji daju našem društvu.
05:32
I want to give you just one example
from Australia in 2015.
from Australia in 2015.
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Želim da vam dam samo jedan primer
iz Australije iz 2015. godine.
iz Australije iz 2015. godine.
05:37
The annual value
provided by informal carers
provided by informal carers
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Godišnja vrednost nege koju su pružili
neformalni negovatelji
neformalni negovatelji
05:40
to those suffering from mental illness
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onima koji imaju mentalne bolesti
05:43
was evaluated at 13.2 billion
Australian dollars.
Australian dollars.
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procenjena je na 13,2 milijarde
australijskih dolara.
australijskih dolara.
Ovo je gotovo dva puta više od onoga
što australijska vlada troši
što australijska vlada troši
05:48
This is nearly two times
what the Australian government spends
what the Australian government spends
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godišnje na službe za mentalno zdravlje.
05:51
on mental health services annually.
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05:53
These numbers, among others,
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Između ostalog, ove brojke
05:56
demonstrate that if carers
were to stop caring tomorrow,
were to stop caring tomorrow,
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pokazuju da, ako bi negovatelji
sutra prestali da neguju,
sutra prestali da neguju,
05:59
our health and social systems
would crumble.
would crumble.
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naš zdravstveni
i socijalni sistem bi propao.
i socijalni sistem bi propao.
06:04
And while the importance
of these millions of silent carers
of these millions of silent carers
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I dok se važnost
ovih miliona tihih negovatelja
ovih miliona tihih negovatelja
06:06
cannot be denied,
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ne može poreći,
06:08
they've largely been unnoticed
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njih u velikoj meri ne primećuju
06:10
by governments, healthcare systems
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vlade, zdravstveni sistem
06:13
and private entities.
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i privatna društva.
06:17
In addition, carers are facing
enormous personal challenges.
enormous personal challenges.
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Onda, negovatelji se suočavaju
sa ogromnim ličnim izazovima.
sa ogromnim ličnim izazovima.
06:21
Many carers face higher costs
and can face financial difficulties,
and can face financial difficulties,
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Mnogi negovatelji imaju velike troškove
i mogu se suočavati
sa finansijskim poteškoćama,
sa finansijskim poteškoćama,
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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imajući u vidu činjenicu da možda
ne mogu da rade puno radno vreme
ne mogu da rade puno radno vreme
06:28
or they may not be able
to hold down a job altogether.
to hold down a job altogether.
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ili ne mogu da sačuvaju posao.
Mnoge studije su pokazale
06:32
Many studies have shown
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06:33
that often carers sacrifice
their own health and well-being
their own health and well-being
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da negovatelji često žrtvuju
svoje zdravlje i dobrobit
svoje zdravlje i dobrobit
06:36
in order to care for their loved ones.
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kako bi vodili brigu o svojim najbližima.
06:39
Many carers spend so much time
caring for their loved ones
caring for their loved ones
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Mnogi negovatelji provode toliko vremena
brinući o svojim najbližima
brinući o svojim najbližima
06:43
that often their family
and their relationships can suffer.
and their relationships can suffer.
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da to često ide na štetu porodice
i odnosa sa drugim ljudima.
i odnosa sa drugim ljudima.
Mnogi negovatelji često govore o tome
06:46
Many carers report that often,
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06:48
their employers don't have
adequate policies in place
adequate policies in place
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da njihovi poslodavci ne vode
adekvatnu politiku
adekvatnu politiku
06:51
to support them.
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koja bi ih u ovome podržala.
06:53
There has been improvement, though,
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Ipak, došlo je do napretka
06:54
in the recognition
of carers around the world.
of carers around the world.
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u davanju priznanja
negovateljima širom sveta.
negovateljima širom sveta.
06:57
Just a few years ago,
an umbrella organization
an umbrella organization
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Pre nekoliko godina osnovana je
jedna krovna organizacija
jedna krovna organizacija
07:00
called the International Alliance
of Carer Organizations, or IACO,
of Carer Organizations, or IACO,
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pod nazivom Međunarodna alijansa
organizacija negovatelja ili IACO,
organizacija negovatelja ili IACO,
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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kako bi ujedinila
grupe negovatelja širom sveta,
grupe negovatelja širom sveta,
07:08
to provide strategic direction,
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kako bi napravila strategiju,
07:10
facilitate information sharing,
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olakšala deljenje informacija
07:12
as well as actively advocate
for carers on an international level.
for carers on an international level.
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i aktivno zastupala negovatelje
na međunarodnom nivou.
na međunarodnom nivou.
07:17
Private entities are also starting
to recognize the situation of carers.
to recognize the situation of carers.
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Privatna društva takođe počinju
da odaju priznanje negovateljima.
da odaju priznanje negovateljima.
07:21
I am proud that my personal engagement
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Ponosan sam što je moj lični angažman
07:24
and enthusiasm towards
this topic of carers
this topic of carers
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i entuzijazam prema ovoj temi
o negovateljima
o negovateljima
07:26
found an echo in my own workplace.
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naišao na odobravanje na mom radnom mestu.
07:29
My company is committed to this cause
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Moja kompanija je posvećena ovoj temi
07:32
and has developed
an unprecedented framework
an unprecedented framework
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i kreirala je najnoviju politiku
za svoje zaposlene i društvo u celini.
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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Cilj je da se osnaže negovatelji
07:40
to improve their own health and well-being
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kako bi poboljšali
svoje zdravlje i dobrobit
svoje zdravlje i dobrobit
07:43
and bring about a greater
balance to their lives.
balance to their lives.
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i došli do veće ravnoteže u svom životu.
07:46
Nevertheless, much more needs to be done
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Ipak, mnogo više treba da se uradi
07:50
to complement these relatively
isolated initiatives.
isolated initiatives.
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da bi se dopunile ove relativno
izolovane inicijative.
izolovane inicijative.
07:54
Our societies are facing
increased health pressures,
increased health pressures,
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Naša društva se suočavaju sa sve većim
zdravstvenim problemima,
zdravstvenim problemima,
07:56
including aging populations,
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uključujući starenje populacije,
07:59
increased incidence of cancer
and chronic conditions,
and chronic conditions,
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češću pojavu kancera i hronične bolesti,
08:02
widespread inequality,
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rasprostranjenu nejednakost,
08:04
amongst many others.
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između ostalog.
08:06
To confront these challenges,
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Kako bi se izborili sa ovim izazovima,
08:08
policymakers must look beyond
traditional healthcare pathways
traditional healthcare pathways
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kreatori politike moraju izaći iz okvira
tradicionalnog zdravstva
tradicionalnog zdravstva
08:12
and employment policies
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i politike zapošljavanja
08:14
and recognize that informal care
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i prepoznati da će nefomalna nega
08:16
will continue to form the bedrock of care.
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nastaviti da formira srž nege.
08:21
Caring for someone should be a choice
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Briga o nekome treba da bude stvar izbora
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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i treba da se vodi tako da čovekova
dobrobit ostane uravnotežena.
dobrobit ostane uravnotežena.
08:31
But to really put the care
back into health care,
back into health care,
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Ali da bi se zdravstvena nega
vratila zdravstvu,
vratila zdravstvu,
08:35
what's needed is a deep,
societal, structural change.
societal, structural change.
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ono što je potrebno je velika,
društvena, strukturna promena.
društvena, strukturna promena.
08:42
And this can only happen
through a change in mindset.
through a change in mindset.
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A ona se može desiti
samo ako se promeni način razmišljanja.
samo ako se promeni način razmišljanja.
08:45
And this can start today.
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A to može početi danas.
08:48
Today, we can plant the seed for a change
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Danas možemo da posadimo seme promene
08:51
for millions of carers around the world.
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za milione negovatelja širom sveta.
Evo šta želim da predložim:
08:53
Here's what I want to suggest:
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08:56
when you go home today
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kada se danas vratite kući
08:58
or to the office tomorrow morning,
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ili odete sutra ujutru u kancelariju,
09:00
embrace a carer.
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zagrlite negovatelja.
09:03
Thank them,
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Zahvalite im,
09:04
offer him or her a bit of help,
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ponudite njemu ili njoj pomoć,
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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možda čak i sami volontirajte
nekoliko sati nedeljno.
nekoliko sati nedeljno.
Ako bi negovatelji širom sveta osetili
da se njihov rad više vrednuje,
da se njihov rad više vrednuje,
09:12
If carers around the world
felt better recognized,
felt better recognized,
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09:14
it would not only improve
their own health and well-being
their own health and well-being
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to bi ne samo poboljšalo
njihovo zdravlje i dobrobit
njihovo zdravlje i dobrobit
09:17
and sense of fulfillment,
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i osećaj ispunjenosti,
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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nego bi takođe poboljšalo
živote onih o kojima oni brinu.
živote onih o kojima oni brinu.
09:23
Let's care more.
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Hajde više da brinemo.
09:25
Thank you.
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Hvala.
09:26
(Applause)
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(Aplauz)
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