WEBVTT 00:00:08.298 --> 00:00:13.547 Pain in people with profound intellectual and multiple disabilities 00:00:14.530 --> 00:00:22.616 Why are people with profound intellectual and multiple disabilities more likely to experience pain? 00:00:22.914 --> 00:00:26.614 I would like to elaborate a little bit 00:00:26.614 --> 00:00:28.534 on the concept of pain. 00:00:28.534 --> 00:00:31.314 We distinguish between different levels 00:00:31.314 --> 00:00:32.694 of pain, and that 00:00:32.694 --> 00:00:34.354 what we are discussing here right now 00:00:34.354 --> 00:00:37.634 is mostly physical pain. 00:00:37.634 --> 00:00:39.594 There are, of course, other types of pain 00:00:39.594 --> 00:00:41.594 such as emotional pain, 00:00:41.594 --> 00:00:45.514 social pain, or emotional pain. 00:00:45.954 --> 00:00:46.914 These are pains 00:00:46.914 --> 00:00:48.994 that people with profound intellectual 00:00:48.994 --> 00:00:50.734 and multiple disabilities are just as affected by. 00:00:50.734 --> 00:00:52.654 But we often know 00:00:52.654 --> 00:00:53.714 much, much less about this pain. 00:00:53.714 --> 00:00:57.394 Nevertheless, we must pay attention to it 00:00:57.394 --> 00:00:59.394 and we need to know something about it. 00:00:59.574 --> 00:01:04.194 Yes, so now to these physical pains 00:01:04.194 --> 00:01:07.294 that people with profound intellectual and multiple disabilities often have. 00:01:07.294 --> 00:01:11.074 And I would like to present some causes of pain 00:01:11.074 --> 00:01:12.754 here. 00:01:13.730 --> 00:01:15.490 People with profound intellectual and multiple disabilities 00:01:15.490 --> 00:01:16.410 are mostly people 00:01:16.410 --> 00:01:18.710 who have severe cerebral palsy. 00:01:18.710 --> 00:01:22.450 And this disability 00:01:22.450 --> 00:01:24.870 simply results in many causes of pain, 00:01:24.870 --> 00:01:27.310 such as muscle and joint pain 00:01:27.310 --> 00:01:30.130 due to deformities 00:01:30.130 --> 00:01:30.910 that occur here, 00:01:30.910 --> 00:01:32.670 such as scoliosis 00:01:32.670 --> 00:01:34.710 or hip dislocations 00:01:34.710 --> 00:01:36.570 or contractures that develop. 00:01:36.570 --> 00:01:40.270 Pain in the abdominal cavity, 00:01:40.270 --> 00:01:42.930 which stems from reflux. 00:01:43.234 --> 00:01:46.014 i.e. the rising of stomach contents 00:01:46.014 --> 00:01:47.714 together with stomach acid, 00:01:47.714 --> 00:01:50.014 which rises into the esophagus 00:01:50.014 --> 00:01:51.674 or up into the mouth 00:01:51.674 --> 00:01:53.654 and cause chemical burns to the esophagus 00:01:53.654 --> 00:01:54.914 under certain circumstances. 00:01:54.914 --> 00:01:57.454 But also severe constipation, 00:01:57.454 --> 00:01:59.094 which people often have, 00:01:59.094 --> 00:02:01.374 can lead to pain. 00:02:01.374 --> 00:02:04.854 Severe respiratory diseases, 00:02:04.854 --> 00:02:06.714 bronchitis, pneumonia, 00:02:06.714 --> 00:02:10.033 which occur far too frequently in these people, 00:02:10.033 --> 00:02:11.654 are naturally painful. 00:02:12.546 --> 00:02:14.906 Problems such as aspiration are added to this, 00:02:14.906 --> 00:02:16.686 i.e., chewing and swallowing disorders, 00:02:16.686 --> 00:02:19.946 which can also lead to pain. 00:02:19.946 --> 00:02:24.066 Then, of course, there is the oral cavity, the teeth, 00:02:24.066 --> 00:02:29.646 which often simply develop more cavities. 00:02:29.646 --> 00:02:31.366 Gum inflammation also 00:02:31.366 --> 00:02:32.886 simply occurs more frequently 00:02:32.886 --> 00:02:35.486 because the composition of saliva changes 00:02:35.486 --> 00:02:37.166 because people breathe through their mouths. 00:02:37.166 --> 00:02:39.366 Because inflammation 00:02:39.366 --> 00:02:41.826 can only be detected much later, 00:02:42.306 --> 00:02:44.786 this can often lead to toothache, 00:02:44.786 --> 00:02:46.166 gum pain. 00:02:46.166 --> 00:02:48.946 And then, of course, pain 00:02:48.946 --> 00:02:50.486 after epileptic seizures, 00:02:50.486 --> 00:02:54.126 pain when hydrocephalus drains 00:02:54.126 --> 00:02:55.226 may become blocked 00:02:55.226 --> 00:02:58.346 and pressure changes occur in the brain. 00:02:58.346 --> 00:03:00.626 And then, of course, 00:03:00.626 --> 00:03:03.346 something like menstrual pain 00:03:03.346 --> 00:03:06.446 or pain after falls and so on. 00:03:07.102 --> 00:03:16.472 Why is it difficult to recognize pain in people with profound intellectual and multiple disabilities? 00:03:17.698 --> 00:03:18.998 Yes, because these people simply 00:03:18.998 --> 00:03:21.918 often do not have the ability to 00:03:21.918 --> 00:03:24.458 tell us about their pain 00:03:24.458 --> 00:03:29.698 and have altered forms of expression here. 00:03:29.698 --> 00:03:33.638 So things, of course, expressions of pain, 00:03:33.638 --> 00:03:37.338 which are completely normal, 00:03:37.338 --> 00:03:40.398 such as crying, a pain-contorted face 00:03:40.398 --> 00:03:43.658 or even moaning or a protective posture. 00:03:44.482 --> 00:03:47.142 which we must of course see, 00:03:47.142 --> 00:03:48.642 which we must observe. 00:03:48.642 --> 00:03:51.002 But sometimes expressions of pain 00:03:51.002 --> 00:03:52.542 are also altered in these people, 00:03:52.542 --> 00:03:55.782 because they may have experienced in their lives 00:03:55.782 --> 00:03:58.282 that normal expressions of pain 00:03:58.282 --> 00:03:59.802 were simply not responded to. 00:03:59.802 --> 00:04:01.422 Let's think about the people 00:04:01.422 --> 00:04:04.062 who were in psychiatric wards for many years, 00:04:04.062 --> 00:04:05.282 who were hospitalized, 00:04:05.282 --> 00:04:07.502 who received very little attention there. 00:04:07,502 - -> 00:04:09,022 Some of them 00:04:09.022 --> 00:04:11.662 learned to change their pain behavior, 00:04:11.662 --> 00:04:13.242 for example, 00:04:13.634 --> 00:04:14.654 that the pain 00:04:14.654 --> 00:04:16.814 communicates as behavioral disorders, 00:04:16.814 --> 00:04:19.553 harming themselves, harming others 00:04:19.553 --> 00:04:21.634 or even stereotypical behavior 00:04:21.634 --> 00:04:22.914 when in pain. 00:04:22.914 --> 00:04:27.174 And here, simply from the environment, 00:04:27.174 --> 00:04:29.434 much more precise behavioral changes 00:04:29.434 --> 00:04:30.634 must be observed. 00:04:31.480 --> 00:04:41.134 What challenges do employees face when providing pain management support to people with profound intellectual and multiple disabilities? 00:04:41.602 --> 00:04:44.442 First of all, I think employees need to 00:04:44.442 --> 00:04:48.702 know much more about the causes of pain. 00:04:48.702 --> 00:04:51.302 So they need to know about the diagnoses 00:04:51.302 --> 00:04:53.922 that these people have, 00:04:53.922 --> 00:04:57.842 what might be associated with pain. 00:04:57.842 --> 00:05:01.822 Then people need to 00:05:01.822 --> 00:05:04.302 observe employees very closely. 00:05:04.302 --> 00:05:07.182 So, changes in behavior, 00:05:07.182 --> 00:05:09.402 increased self-harming behavior, 00:05:09.402 --> 00:05:11.542 increased aggressive behavior, 00:05:11.542 --> 00:05:15.142 and severe motor restlessness are behaviors 00:05:15.142 --> 00:05:16.182 that are known to 00:05:16.182 --> 00:05:18.562 that are often caused by pain. 00:05:18.562 --> 00:05:22.062 And, of course, there are also 00:05:22.062 --> 00:05:25.702 instruments for observing pain. 00:05:25.702 --> 00:05:29.670 You can use observation sheets, 00:05:29.670 --> 00:05:31.350 some of which are used in dementia care, 00:05:31.350 --> 00:05:33.310 but there are also observation forms 00:05:33.310 --> 00:05:34.690 that are specifically designed 00:05:34.690 --> 00:05:36.370 for pain diagnosis 00:05:36.370 --> 00:05:38.810 of people with profound intellectual and multiple disabilities. 00:05:38.810 --> 00:05:44.270 And these pain observation sheets contain items 00:05:44.270 --> 00:05:50.690 that primarily stimulate this behavioral level, 00:05:50.690 --> 00:05:53.602 to pay attention to the changed behavior 00:05:53.602 --> 00:05:54.502 in these people. 00:05:54.502 --> 00:05:55.542 And, of course, 00:05:55.542 --> 00:05:57.722 other physical changes 00:05:57.722 --> 00:05:59.342 that need to be observed here. 00:05:59.342 --> 00:06:04.402 And of course, we also have people in our circle 00:06:04.402 --> 00:06:06.242 who, with the help 00:06:06.242 --> 00:06:10.542 with the help of assisted communication using picture symbols, 00:06:10.542 --> 00:06:13.862 and simple pain scales. 00:06:13.862 --> 00:06:17.042 And providing these for these people 00:06:17.042 --> 00:06:17.602 is, I believe, 00:06:17.602 --> 00:06:19.382 a very important task for us. 00:06:23.532 --> 00:06:27.672 What kind of professional (further) training do employees need? 00:06:31.362 --> 00:06:32.502 Yes, well, one thing 00:06:32.502 --> 00:06:34.642 is that I think they simply need to 00:06:34.642 --> 00:06:37.242 be made aware of this issue in a very fundamental way, 00:06:37.242 --> 00:06:40.142 at least when it comes to the topic of pain. 00:06:40.142 --> 00:06:44.602 That, of course, 00:06:44.602 --> 00:06:47.002 you can establish these connections here, 00:06:47.002 --> 00:06:49.882 which chronic diseases 00:06:49.882 --> 00:06:53.162 often lead to pain in this group of people. 00:06:53.162 --> 00:06:55.022 Then, of course, 00:06:55.022 --> 00:06:58.482 that these expressions of pain 00:06:58.690 --> 00:07:00.890 can be communicated in a very different way 00:07:00.890 --> 00:07:02.830 by these people. 00:07:02.830 --> 00:07:05.990 Then, of course, employees must 00:07:05.990 --> 00:07:07.890 knowledge of these instruments 00:07:07.890 --> 00:07:09.630 for pain observation, 00:07:09.630 --> 00:07:11.270 i.e., deal with 00:07:11.270 --> 00:07:14.070 such pain observation forms 00:07:14.070 --> 00:07:15.230 and 00:07:15.230 --> 00:07:18.530 learn how to use them 00:07:18.530 --> 00:07:20.270 practice with them first, of course. 00:07:20.270 --> 00:07:22.890 And, of course, they need to 00:07:23.330 --> 00:07:24.310 be familiar with these options 00:07:24.310 --> 00:07:26.190 of assisted communication, 00:07:26.190 --> 00:07:27.690 and also receive further training in this area. 00:07:27.690 --> 00:07:28.610 What is available? 00:07:28.610 --> 00:07:29.950 How can I use that? 00:07:29.950 --> 00:07:33.350 And then, when we think about pain therapy, 00:07:33.350 --> 00:07:35.030 i.e. ways of helping, 00:07:35.030 --> 00:07:36.870 we can of course also provide further training in this area. 00:07:36.870 --> 00:07:37.890 What options 00:07:37.890 --> 00:07:40.910 are there for drug therapy? 00:07:40.910 --> 00:07:43.650 Although that is, of course, more of a medical question. 00:07:43.650 --> 00:07:44.870 But of course also, 00:07:44.870 --> 00:07:46.410 what alternative options 00:07:46.410 --> 00:07:48.030 are there for pain management? 00:07:50.704 --> 00:07:58.204 What options are available to employees at work and educational institutions to relieve pain? 00:08:00.578 --> 00:08:02.878 On the one hand, of course 00:08:02.878 --> 00:08:07.558 pain medication in the form of painkillers, 00:08:07.558 --> 00:08:14.578 that first of all, of course, it must be known 00:08:14.578 --> 00:08:18.998 which clients have, 00:08:18.998 --> 00:08:21.758 how do you say, 00:08:21.758 --> 00:08:28.470 prescribed pain medication 00:08:28.470 --> 00:08:29.690 if necessary. 00:08:29.690 --> 00:08:33.530 But here, too, it must be administered very responsibly 00:08:33.530 --> 00:08:35.309 and always recorded. 00:08:35.309 --> 00:08:36.830 Is this painkiller working, 00:08:36.830 --> 00:08:38.750 the one I've just given you? 00:08:38.750 --> 00:08:40.289 So here again, observation sheets 00:08:40.289 --> 00:08:41.309 must of course be used 00:08:41.309 --> 00:08:43.150 and document that as well. 00:08:43.150 --> 00:08:44.790 Did a painkiller work? 00:08:44.790 --> 00:08:47.950 But of course the possibility 00:08:47.950 --> 00:08:51.910 of alternative pain treatment, 00:08:51.910 --> 00:08:55.110 which is extensive and starts with 00:08:55.618 --> 00:08:57.078 pain relief 00:08:57.078 --> 00:08:58.578 for example, with grain pillows 00:08:58.578 --> 00:09:02.178 or other heat therapy options 00:09:02.178 --> 00:09:03.138 or even, 00:09:03.138 --> 00:09:05.218 if there are inflammatory processes, 00:09:05.218 --> 00:09:08.958 then cold therapy with a cold pack is more appropriate. 00:09:08.958 --> 00:09:09.938 Sometimes it helps 00:09:09.938 --> 00:09:11.098 and especially when you think of 00:09:11.098 --> 00:09:13.198 people with cerebral palsy, 00:09:13.198 --> 00:09:16.378 even just a change in body position, 00:09:16.378 --> 00:09:19.458 removing them from their wheelchair, 00:09:19.458 --> 00:09:22.238 positioning them comfortably 00:09:22.238 --> 00:09:24.318 using positioning aids. 00:09:24.994 --> 00:09:28.294 This can be very helpful here in some circumstances.