My name is Norbert Hödebeck-Stuntebeck, andI am a psychologist and a psychotherapist from Germany.

我叫诺伯特·赫代贝克·斯图特贝克，我是来自德国的心理学家和心理治疗师。

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And I"m working since more than 25 yearswith people with Prader-Willi in group homes, but also with parents, over thistime, over this long time.

超过 25 年以来，我一直在团体之家与Prader-Willi患者一起工作，也与Prader-Willi患者的父母一起工作,但在这段时间里，在这么长的时间里。

And what I do together with Hubert Soyer iswe developed a training program for caregivers and also for parents.

我和休伯特·索耶一起做的是：我们为照顾者（照顾Prader-Willi患者的人）和父母制定了培训计划。

Yes, my name is Hubert Soyer and similar toNorbert, I work more than 25 years also,

with people with Prader-Willi syndrome andwas a director of an institution which has services for more than 80 peoplewith Prader-Willi syndrome.

是的，我叫休伯特·索耶，并且类似于Norbert，我也和普拉德-威利综合征患者一起工作了25年。我是一家机构的主管，该机构为80多名普拉德-威利综合征患者提供服务。

And over this time, I think we reallylearned a lot from them.

在这段时间里，我想我们真的从他们身上学到了很多。

And therefore, we want to talk about atopic that for us, is very important,

因此，我们想谈一个话题，这对我们来说非常重要，

we want to talk about support ofcaregivers, but also support for people with Prader-Willi syndrome.

我们想谈谈对照顾者的支持，还有支持Prader-Willi综合征患者。

Maybe we start with talking about what wedo often, so we do often things for thecaregivers,  and we developed a trainingprogram for them.                

也许我们从谈论我们经常做的事情开始，所以我们经常为照顾者做的一些事情，我们为他们制定了一个培训计划。

And, because what I think, and I think we decided together   is that if we can support and train thestaff,    

then it gives them a good feeling and a stable situation for themselves to takecare of people with Prader-Willi.     

而且，因为我认为，我认为我们共同决定的是：如果我们能够支持和培训员工 (员工指：照顾普拉德-威利患者的工作人员)，

在他们照顾普拉德-威利患者的时候，能有一个良好的感受和一个稳定的环境。

I agree, I think if we have good trainedstaff, and knowledgeable staff, it willenhance the quality of life for both, for the carers 

and also for the people with Prader-Willisyndrome. So we develop trainings forthe staff.                                                 

我同意，我认为如果我们有训练有素的员工和知识渊博的员工，这将共同提升照顾者(照看人)和Prader-Willi综合征患者的生活质量，

因此，我们为员工开展培训。

But we should, and this is more of ourvision for the future, is we shoulddevelop things like trainings for people with Prader-Willi.                        

但我们为患有普拉德-威利综合征的人开展培训等活动，这更多是我们对未来的愿景。

I think that"s important, to look at themand to give them more opportunities to talk about their,

they have Prader-Willi syndrome, to talkabout Prader-Willi syndrome and what it is for them and not only from our pointof view.

我认为这很重要，看看他们，让他们有更多的机会谈论，他们患有Prader-Willi综合征，谈论Prader-Wulli综合征对他们的影响 ，不仅从我们的角度来看。

Yeah.And it is an interaction,  so ifpeople with Prader-Willi syndrome knows more about themselves,then they caninform the staff what they need.       

是啊，这是一种互动， 所以如果患有Prader-Willi综合征的人更了解自己，然后他们可以告诉员工他们需要什么。

Yeah.

是啊

So if they have words for their needs, then it"s easier for the staff to do theright things, I think.                         

所以，我认为，如果他们能表达他们的需求，这样员工更容易做正确的事情。

And I think to get knowledgable staff, itneeds time and it needs resources, and that"s often the problem

that you don"t have enough resources.

我认为，要获得知识渊博的员工，需要时间，它需要资源，这往往是问题所在，你没有足够的资源。

But I think, if you think, to get itsustainable, it"s necessary that the staff is trained.

但我认为，如果你认为，要使其可持续发展，工作人员必须经过培训。

Yeah.

是啊

And this is what we saw over the years whenwe do these trainings and,it opens minds of the staff,

and in this interaction it opens the mind also for people withPrader-Willi in these group homes or at home.                               

这是我们多年来看到的，当我们进行这些培训时，它打开了员工的思想，

在这种互动中,为在这些集体居住或家中拥有普拉德·威利的人打开了思路。

Yeah.

是啊

And I think we should not forget theparents, to offer things like this.It"s always the system.

我认为我们不应该忘记父母，他们提供了这样的东西。这始终是系统。

Yeah.

是啊

And there are a lot of factors which areinfluencing the wellbeing and the quality of life of people with Prader-Willisyndrome.

有很多因素影响着Prader-Willi综合征患者的幸福和生活质量。

But we often talk about living, or livingat home.

但我们经常谈论生活，或者住在家里。

But what do you think about these this areaof working?

但你对这方面的工作有什么看法？

I think that"s really important and we arereally at the beginning,

我认为这真的很重要，我们真的处于起步阶段，

and I know from a lot of people withPrader-Willi syndrome, they want to have a meaningful employment

and they want to earn their own money andthat"s, we are at the beginning to think about this.

我从很多患有Prader-Willi综合征的人那里知道，他们想有一份有意义的工作，

他们想自己挣钱，也就是说，我们刚刚开始考虑这个问题。

And what we have to think about more is thesense of their work so that they are proud about what they are doing.                      

我们需要考虑更多是是他们的工作感受，从而让他们为自己的工作感到自豪。

But they could only be proud about this ，  

if they understand what it is, what theyare doing, for what they are doing it.

但他们必然为此感到骄傲，                         

如果他们了解这是什么，他们正在做什么，他们在做什么。

More sense of more meaningfulemployment.

更有意义的就业意识。

And I think that"s not only in our regionin Germany, I notice it"s so all overthe world, to get these meaningful employment

and these opportunities for people withPrader-Willi syndrome.

我认为这不仅仅是在我们的德国地区，我注意到全世界都在为Prader-Willi综合征患者寻找有意义的工作和工作机会。  

And when we talk about caregivers andpeople with Prader-Willi, I think the environment is another importantthing.                      

当我们谈论照顾者和Prader Willi患者时，我认为环境是另一件重要的事情。

So how can we enhance the wellbeing of the people with Prader-Willi but also ofthe staff?                          

那么，我们如何才能增进Prader Willi患者和员工的健康幸福？？

Yeah.  

是啊

And I think to develop,or think more aboutthe environment, the question of should they have single apartment

我认为，或者更多地考虑环境，他们是否应该拥有单身公寓？

Should they have bigger units?

他们应该有更大的单位吗？

Yeah. 是啊

What are people with Prader-Willi syndrometelling us?

Prader-Willi综合征患者告诉我们什么？

I asked them, and not all, but most of them wanted to have their ownapartments.                       

我问了他们，但不是所有人，但他们中的大多数人都想拥有自己的公寓。

This sounds the same as I figured out.

这听起来和我想的一样。

Yeah.

是啊

And some wants to live by their parents fortheir whole life, but many of themwants to have their own things.                    

有些人想一辈子和父母住在一起，但他们中的许多人想拥有自己的房子

so that they can invite the parents totheir own unit, their own apartment.

这样他们就可以邀请父母去他们自己的的住所，他们自己的公寓。

And they are very proud about invitingparents to their own thing.

他们非常自豪地邀请父母参到他们的公寓中。

Yeah, and that"s a private space they need,I think.

是的，我想这是他们需要的私人空间。

And that"s also the room they can go back to if something getswrong.                      

这也是他们的房间 ，如果出了问题，他们可以回去。

Yeah.

是啊

And, and I think that"s a privateatmosphere and that"s so important.

而且，我认为这是一种私人氛围，这非常重要。

And what do you think we have to change forthe staff, for the caregivers in the environment?

你认为我们需要在环境方面，为员工做出哪些改进？

Is there something what we can do that theyfeel better in their work?

我们能做些什么让他们在工作中感觉更好吗？

I think often the staff are anxious about,can I do this in this way?

我想员工们经常担心忧虑，我可以这样做吗？

Yeah. 是啊

Andhow to get them to safety,to say no, yes,

it"s possible to react in this way and toact in this way.                 

如何让他们安全，说不行或者行，                      

这样的反应和行动是否是可以的。

So we have to talk about the rules and therules from the government, and we have to make, this is important,

所以我们必须讨论政策和政府的政策，我们必须做到，这很重要，

we have to make them sure what they can doand what not.

我们必须让他们确定他们能做什么，不能做什么。

Yeah.是啊

So that they, for example, in a crisissituation that they are sure what they can do.

例如，在危机情况下，他们确信自己能做什么。

And if they know what to do, then I thinkthey are more clear in the way they do it.

如果他们知道该做什么，那么我认为他们的做法更清楚。

And in the interaction with someone withPrader-Willi when you know what you are allowed,

then it"s more clear and you influence theother in a better way, I"m sure.

在与Prader Willi的互动中，当你知道你被允许做什么时，                          

那就更清楚了，我相信你会以更好的方式影响其他人。

May I come back to the peer support?

我可以回到同行支持(患者之间的支持和帮助)吗？

For I thinkpeople with Prader-Willi syndrome, if we give them the chance tolearn   

how to give their point of view to the others and to give them help,

they already experience a lot ofsituations and how to help each otherand that peer support,  

and I think that"s a really important topicfor the future. And it starts here at theIPWSO conference in Limerick.                         

因为我认为患有普拉德-威利综合征的人，如果我们给他们学习的机会：去学习如何向他人表达自己的观点、向他人表达自己需要的帮助。

他们已经经历了很多情况以及患者之间如何互相帮助和支持，

我认为这对未来来说是一个非常重要的话题。这从利默里克的 IPWSO 会议开始。

We do things in the past and we have verygood experience with this to give them the chance and to help them to leadgroups, to lead workshops.

我们过去做过很多事情，在这方面我们有很好的经验 ，给他们机会，帮助他们领导小组，领导研讨会。

They are able and really I hope we will seeit at the next IPWSO conference, at a real programme, at a part of theconference.

他们有能力，我真的希望我们能在下一届 IPWSO 会议上看到它，在真正的计划中，在会议的一部分

So it gives them the feeling that they arepart of the whole PWS world.

所以这给他们一种感觉，他们是整个PWS世界的一部分。

Yes.对

And I think that"s what is meant ininclusion, to give them the possibilityto participate.                          

我认为这就是包容的含义，让他们有机会参与。

Yeah.            

是啊

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