Health and welfare technology for children, adolescents, young adults with intellectual disabilities

hi and welcome to this second webinar of our nordic research network health and welfare technology my name is benkt anderson i'm a senior advisor at the nordic welfare center and with me here from the start i have helena melkas helena yes thank you and um welcome also on behalf of the chairpersons of this nordic research network i am helene amelcas working at la perrandalati university of technology in lahti finland as a professor of service innovations and i'm sharing this network this year together with anna forsman from oboe academy university in barsa i hope you will have an interesting afternoon warmly welcome thank you yes uh i will share my screen here now and uh there we go and the focus we have today is health and welfare technology for children adolescents and young adults with intellectual disabilities but we i think we should start with say something more about our network uh the nordic research network health and welfare technology the aim of the research network is to consolidate knowledge uh research higher education and experiences in the field of health and welfare technology and i would use a perspective both from an end user perspective and their relatives but also with the perspective of people working the staff working in our welfare organizations and you can look at this link to know more about this this network and helena we have activities going on this year haven't we yes indeed there is a web page for the members of the network and we are looking forward to having an active flow of information also from the from other members so that's one type of activity and then we are going to arrange another two webinars in the autumn um after these two now in the spring we will also prepare joint research proposals and participate in various events arranged by others such as the nordic council of ministers and also events such as the hymns conference erhin conference vitalis and so on then we are also planning to have a network meeting in december this year and we have an ongoing joint project already that's called protect and it's means proactive health and welfare technology for nordic users and societies and that's a project that arranges workshops and we will be updating information about its um progress on the website later on this year thank you yes so there's a lot of things going on and we're happy to to have this network we are around 50 members of this network right right now now back to today's program uh we will have this focus as we said health awareness welfare technology for children and also adolescents and young adults with intellectual disabilities and uh um we see that there is a this seminar we will present the results from five years of research from interventions in the norwegian municipalities with a user-centered approach in implementing health and welfare technology to children adolescents with intellectual disability we will also present experiences from how user-driven innovation and design activities with people with intellectual disabilities can be conducted and you see the program here we we helena and i have welcomed you and then we will have a presentation from underneath narwick we have you've had the possibility to put down questions uh in the chat i will be the chat moderator here today so i i will pick up what you write and the questions you write down in the chat and ask them to andina and then we will have a presentation from chris safari and also there we have questions and comments and then at four two o'clock we will have a panel discussion led by john hiller uh so that's that's um that's how the programs is looks today we will close the webinar at half past two and then i also would add that there are possibilities to get subtitles we have we have um written interpretation uh you could say subtitle and you can get there yeah they get text what's what we are talking about here at the same time as we say it in fact uh all right i will stop sharing here now and uh welcome our first presentation and presenter here today and that is uh no no sorry uh that is a senior advisor and phd student at norwegian center for e-health research bundina are you there i'm here very good very good welcome thank you thank you yes i hear you very well and you could start sharing your presentation if you want to and as i said we will hear hear about five years of research health and welfare technology for children indolences with intellectual disabilities and uh there you go andina i give the word to you do you see my presentation yes we see it very well perfect thank you very much thank you and i remind you all out there write questions in the chat and then dina and i will have a we'll have uh uh five minutes to i could put good questions to you and dean from the word is yours thank you bank thank you very much uh yes spank says i will present our research and assessment on welfare technology for children and youth with intellectual disabilities this work has been conducted by myself only i'm not yet a phd student but hopefully to become i'm social anthropologist um the work has also been conducted together in the team with mariana rebecca johnson senior researcher and sociologist at the norwegian center for e-health research all of us are working there and can heal the rhode sociologist and phd student shortly about what i will talk about the five years of research the phases we have going through the research questions and the methods we have used about two knowledge summaries we have conducted then the user experience study actually too then the study about organizational preconditions for welfare technology and at the end very short the study about welfare technology is part of a holistic service offer these projects have been conducted in collaboration with the norwegian directorate for of health um in 2013 the directorate was committed to start a norwegian welfare technology program together with the directorate of e-health and the norwegian association of local and regional authorities the basis for this was that they wanted to assure that welfare technology was well well unvent well used through financiation of municipalities and to financing their trials and the work on welfare technology and um with regards to this topic children and youth with intellectual disabilities there have been up to 20 26 municipalities um trying out or testing welfare technology for the target group we have collaborated with the norwegian welfare technology program with a rece and have provided research and assessment on this topic and the goal for the project is to to see a look whether welfare technology can support social participation and mastering of leisure time activities of children and youth with disabilities shortly i guide you shortly through the phases first the knowledge summary then the trailing research on user experiences in two municipalities the second phase looking into organizational preconditions for implementing welfare technology and based on interviews with people working in four municipalities norwegian and the third phase there we have actually looked at user experiences two two and a half years after the first trial we have conducted an an international knowledge summary and our last study was about welfare technology as part of a holistic service offer for the target group and here we have interviewed um we are look we were looking on three perspectives the user professionals and the management perspective the research questions were uh whether and how can welfare technology be useful to children and youth with disabilities what significance can welfare technology have for participation and mastering of leisure time activities then whether there were changes in use of time use of the use of welfare technology over time as i said what are the organizational preconditions for successful implementation of welfare technology and how can welfar technology become part of a service offering to children and youth with disability very short the methods we use qualitative methods interviews where we interviewed in the first round 19 parents of 18 children and five of the children were attending and there were short conversations uh 10 technologies were tested in the second phase we interviewed 16 professionals and here it was four municipalities and the first it was two in the third phase we had two focus groups with nine parents in total and in the last study we studied we interviewed 11 informants related to a child with down syndrome and that was both interviews and focus groups [Music] there were five groups of uh of categories for the technologies tested technologies for for supporting speech and communication technologies for um supporting the getting over supporting that the child gets overview over time planning and structuring of the day localization technology collaboration technology and educational games here's an overview of the six reports we wrote and one norwegian scientific article all can be um approached in our website you will see later on the address for the website if we start with the knowledge summaries shortly we conducted first some very um we say time we had short time for this uh literature review in in um in the nordic countries and uh that we used we were looking at after articles evaluation reports that said something about experiences with the use of technologies the international literature review i will talk a little bit more about here we have two reports that we call knowledge summaries and you see the nordic was conducted in 2016 and international in 2019 we i don't go very much into the different summaries what is important for you to know is are there right now other results if we compare the first knowledge summary with the second one and what we saw in 2019 was that there were actually new technologies tried out compared with the first and these were a virtual reality robot and gaming technology we saw also that um this was mostly the the articles were mostly related to simulations of daily activities in educational settings and we concluded that that there was a also a need for more knowledge on implementation and organization of welfare technology just a little bit water with regards to the user experience um we conducted two studies a one in 2017 one in 2019 mostly with the same families interviewed um [Music] the one in 2017 and this is only really a short insight is that the parents saw potential with welfare technology welfare technology and this was on six areas welfare technology could support independence it could give the children overview control and predictability could support communication and social participation and also provide safety for both parents and and children and actually rem uh provide removal of workload for the parents or or load for the parents it also could um lead to a feeling of normalization and it could be a good instrument for play entertainment and interest i will give a quote related to normalization by one of the parents that will give you a feeling of uh what is meant by the potential of um of welfare technology and here it is where one one parent said sometimes he calls us with his watch it was a gps watch although we know where where he is he thinks it is fun to say where he is or to say i'm coming now and that we make appointments other kids do so he thinks it is cool to do so okay um shortly about the experience the parents experience after two and a half years um they have gained uh more experience in using welfare technology and they were also more reflected on or yes more reflected on the 12-fact technology actually should be a part of the services uh the general services that child should receive and they were demanding a more holistic service offers so the following aspects were mentioned by the parents like the importance of individual adaption of welfare technology and training and follow-up as well as the importance of coordination both with regards to support for the uh for the families but also between the actors uh in order to use welfare technology in a in a proper way and it was also about um creating how to create a culture and a service for it was important to create the college and the service for the use of technology and they said it was there should be an equal offer independent of parents economy or initiative or competence and at the end there should be a live course perspective and including seamless transitions and holistic so service but there were also challenges expressed by the parents and this amongst other led to a model we created which we um i'm sorry i didn't um i didn't translate everything in english um i shortly said the model sums up that there is our technological aspects organizational aspects and social and individual aspects that could that are important to merge to look at in order to have the proper adaption individual adaption according to implementing welfare technology solutions so the this means there is a there is a room of possibilities for technology if you use if you have the user in the center so we interviewed parents no not the parents we already have talked about that we had this study about them implement the study about preconditions for implementing welfare technology from the and then this was from the view of municipal professionals and we studied it on three levels these levels were the user perspective level micro level the facilitator level um perspective meso level and the management perspective the macro level and we see that this level um [Music] one second this level uh levels demands and there is an importance of the child's needs and possibilities on that was the user perspective level and with regards to the facilitator perspective there will be new practices uh in the service as soon as you introduce a welfare technology and this should be should be taken into account when you do that as well as the macro level where leadership and anchoring are important aspects an example for anchoring will be that you it was mentioned that it was of importance actually to to make welfare technology projects visible in the municipal budgets in order to um for click to to to make people on the on a more higher level responsible and all this shows a very complex picture with regards or with regards to implementation of welfare technology a very short year the last study was about welfare technology as a part of a holistic offering and this was conducted in buda municipality where we interviewed i mean it was 11 in four months around the child [Music] i can say that the buddha had a good um [Music] ground of bases because they the digital a digitalization initiative in buda gave this good basis also for a project for welfare technology for children and youth with disabilities there were three children they tried out welfare technology for and they created a service model where they um where they which was iterative where they had the elements as mapping the needs of the child training both child and all the actors facilitating coordinating follow-up and looking again whether the needs have changed so this this was one success fact of actually for uh having a good um process for implementing this implementing welfare technology and as you see um we conducted the case study and with the aim to provide holistic knowledge on how welfare technology can meet user needs and be organized as part of the service provision we interviewed actors around one child and i think i don't have more um more slides on that study but you can read that study i think it can be interesting i want to to come back to what matters and how to be successful in implementing welfare technology with the user in the center and there is a last quote um from a parent that also is significant in order for this aspect and it says uh he's not going to become independent in all areas just because of this app but it doesn't matter what is important for us as for most of these families are the small things that become very big and important the things that make they sorry there's things that many take for granted such as the children can play in the garden that is not the case for us but if he can be alone in the garden that is fantastic shortly about the steps ahead we are planning scientific articles um a result of these five years of research is actually the phd for green hilde and hopefully phd for me too thank you for your attention thank you thank you very much perfect timing as well i'm impressed with that and i say to you look at this now if you have any questions to you and dinner please put them in them in the chat and i will forward them to to and then i i i have a question about the on one of those last slides you you you had in dinner when it comes to the how to be successful uh we say that we have the user in the center and and i just i don't know if it's a question or it's maybe just a reflection that that this kind of work you're doing this kind of research is is crucial to to because we talk so much about that we need to have the user in the center but um but there are so many uh people working and organizations working around this this target group so and everyone says they have the the user in the center but but we need to have the user perspective here um i meant what's your again what's your reflection not a question really but the reflection on that yes i totally agree and i'm happy that we actually started with started our work with conducting studies on user experiences it was families we started with the children were very small and some of them couldn't couldn't communicate um the way we would understand but we think that that it gave us a lot of insight actually uh the the experiences by the families and these uh experiences were pretty well mirrored in the experiences the professionals had too yeah so actually a lot is about um [Music] but we were lucky also that in all the projects where the user very good um they're well met the user was in the center in the project yeah and i also think that is interesting to to hear that you say that when you concluded in the first with the first presenter there is the need for more knowledge on implementation and organization uh what do you mean by that what do you mean more knowledge about that um this this was um uh result after the study then uh where we where we searched the scientific database for um for experiences and benefits with uh welfare technology and um what we actually didn't find so much was that type of studies saying how welfare technology can be implemented as part of a holistic service and but this i can as well say that the organizational problems according to implementing welfare technology is no news because this is what we are coping with when we are doing research on um implementing new technologies yeah i have a question here from the chat user is important but have you reflect how to that effect usability yeah you're right and when the model you saw which i couldn't go uh go deeper into um took this user a bit uh use um you say brickaven yeah usability yeah usability took it uh very much into account and our first knowledge summary was looking mostly into uh usability into what are the uh what did uh did we find in the literature that gave us good insights and tips with regards to usability okay uh we have i have one more question about welfare technology in norway but i think we save that question and take that put that to the back to the panel later on so you don't you don't have to answer that uh right now so i say a big thank you to you and then for this presentation and this chat we have now thanks a lot and we will go on in our program and uh i welcome chris safori to to join us and to present uh having a presentation of user driven innovation and design activities with the people with intellectual disability chris you're a phd research fellow at the university of agida in norway warm welcome to you thank you very much thank you for for the invitation as well yeah and you can start uh sharing your presentation maybe and go on with your presentation about user-driven innovation and design activities i think that's very very interesting we see your presentation very well i give the word to you chris and then i get back and we have a little chat with questions afterwards welcome and i give the word to you thank you very much um and again uh thank you for for the opportunity to present uh here today um so i will be speaking about uh innovate and needs uh and user-driven innovation with people with intellectual disabilities uh my name is mugula chris safari or just chris i'm a phd student at the university of akder in the department of psychosocial health and also working at the center for ehealth working with my phd my supervisor is alien tigerson and also sophia vas today i will be speaking about our project but i will mostly focus on the user gain people with intellectual disabilities have had participating in the design activities that we've had so uh in abide um is a neat and user-driven innovation project based at the university of akder um and the aim is to develop innovative and technology supported services that will help people with intellectual disabilities transition from school to working life the project follows action design research and has that as a methodology and it allows researchers to solve practice inspired problems through the design and development of technology also by the support of theory importantly the method stresses the need to involve the end user in the design process to design and develop useful services which was one of the most important thing in in the inner by project to have user involvement i will shortly talk about the four innovations being developed so one of the innovations is a self-reflective career tool for people with intellectual disabilities this focuses on the area of getting employment and will work as a digital cv for students who are transitioning from school to work or searching for for employment the next innovation is a communication support which aims at keeping people with intellectual disability in work so this solution will work towards communicating between the individual the workplace proxy and so on so that the person can stay in work or employment longer the third innovation is an inclusive workplace this aims at uh helping people with intellectual disabilities uh get work this will be a database which can be used to recruit and hire people with intellectual disabilities where also employers can use the workplace to search for feeding people for different work tasks and employment so this aims at also connecting employers and people with disabilities in terms of attaining work the last innovation is a transport support application which um aims at helping people with intellectual disabilities also stay in work early when we were identifying challenges for people with intellectual disabilities in terms of getting work transport was discovered as one of the biggest barriers for people with intellectual disabilities in terms of employment getting work and also staying and retaining work so these are the four different innovations that the participants have been involved in designing and developing so the last year's technology design has somewhat shifted from a design a centered approach towards a more user and human centered approach so nowadays designers are encouraged to involve people from the intended user group in the design processes and this may be through needs identification or the design or prototyping or even evaluation of the technology and other studies have shown that user involvement can contribute to both positive outcomes for the user being involved as well as the technology being developed in terms of user certification but also other design aspects however there seems to be less focus on young adults and adults with intellectual disabilities in terms of participating in technology design activities we know very little about how they experience being part of design activities and we also know little about potential user gains however when the outcomes have been reported earlier people with intellectual disabilities have seldom been directly consulted and also due to difficulties in examining user benefits the research to date has been limited and somewhat informal and what makes innervate or what made innervate perfect for for this kind of project is that one should not artificially create technology design teams for the sole purpose of exploring or understanding the effects of participation therefore we wanted to explore the experiences of the participants um in parallel to the other research activities and the design activities that were being performed by innervate i'd also like to state that the pictures used in this powerpoint are taken and during the design activities uh connected to the inner bite project so the participants um participated in different types of workshops ideation workshops concept workshops um but also in user test stability tests we tested the technology prototypes but also on paper before creating prototypes on ipads iphones and also a computer most of the tests were being uh most of the tests were at the classrooms where the students um were going to school but we also had some tests at the lab at the university where we were filming and testing the usability of the technology we also had user tests in realistic environments for instance the transport support application was tested by renting a bus and driving around and trying to figure out how well the usability was but also which barrier the technology could help mitigate for the person using it we also used drama workshops as as the context of some of the tests we had so in terms of methods um so in this presentation i'm not presenting one specific article but more an overview and what is being presented today stems from several different publications however we had a qualitative and an explorative approach we interviewed the participants had some photo voice interviews as well and used images and picture support during interviews we also had participant observation and reflective notes from all participants surrounding the participants during the design activities i would also like to say that we used photovoice uh also as a method for needs identification um as well as to explore their experiences in participating in the design activities so i would like to talk about some of our findings in terms of the impact of participation on people with intellectual disabilities so mostly the participants described having positive experiences being a part of the design activities was fun described as pleasurable and this was linked to several different tasks for instance working with technology taking pictures drawing or writing up about their own interests most of these things were by some described as exciting and enjoyable the participants also described having positive emotions during the design activities they felt empowered confidence also pride of being asked to participate in technology design activities but also a sense of competence our participants were were viewed as experts uh which we thought was essential in the development of the technology and they offered uh input from life words that were far away from our own which makes their opinions very important and they felt feelings of pride and also feelings of competence in being in a position where they had new information for for us to continue the participants also described feelings of positive behavior in terms of engaging in working with the technologies um ideation workshops and coming up with different ideas um they also thought that being part of the process was meaningful and this was linked to that they could also use the technology themselves when the technology was developed as well as this technology could help other people with intellectual disabilities they also describe coping as disability as the design activities were something new to them they hadn't been part of activities like this before and being a part of it and managing to to be a part of the activities was seen as important for them the participants also described developing new skills and abilities mostly connected to the technology as well as the design process they described knowing more about how technology is designed more about the process in which technology is designed but also about how research is conducted most of our participants had smartphones with snapchat and instagram but knew very little about how the technology was developed we have also looked into what motivates during design activities the participants described involvement as a very important motivating factor having the autonomy to be a part and take decisions as well as being listened to and being able to influence the design and the solution however the participants also thought that it was important to influence the design activities um choosing what activities they would like to participate in and not for instance in some activities they can choose between drawing or writing and taking pictures or describing so these were things that were motivating for them because they could um have autonomy in the situation where they were being a part of the participants also described um the design activities as a social event they could meet new people that they wouldn't meet in other contexts as well as they could develop new social relationships with other people the students participated in groups from from school and viewed the design activities as a social arena to get to know each other even more as well as getting to know new people we also had social lunches and um used quite a lot of time together which they find found motivating also uh the importance of um of enjoyment was described as a motivational factor enjoying the design activities which stems from intrinsic motivation being a part of of activities because it's it's fun to be a part of so this was also an important motivational part of being part of the design activities so here in terms of enjoyment enjoying the activities can also help ensure that there are more positive than adverse or negative experiences so in terms of pinpointing how or which specific activities lead to certain experiences um we found it difficult because some participants enjoyed taking pictures theater or role plays while other find prototyping in real settings as pleasurable and while some find activities difficult or challenging like drawing or taking pictures and other participants did find them enjoyable or familiar for instance when using photovoice some participants took a lot of pictures they had instagram used photovoice i used the snapchat i'm sorry a lot um other participants had not used uh the camera on the phone a lot so this just shows that there are very different uh experiences and also um this leads it to being very difficult to pinpoint how specific activities or even roles lead to to specific experiences so while participation in design activities was primarily a positive experience some participants also described some adverse experiences such as boredom or low levels of focus was also observed a lack of interest in some design activities was also observed and also a non-engagement um so some participants described for instance drawing as boring and did not want to draw but as long as we can facilitate to something else um we could mitigate around that experience um and it is also very important for us to pinpoint that it is the researchers or designers responsibility to seek to ensure that participation is primarily a positive experience so facilitating during the design activities when working with people with intellectual disabilities is important so some of the implications we've had is facilitating where we focus on preferences and individual needs and not diagnosis was important also evaluations throughout the design activities also participating over time was important as the participants could then get more confidence and trust um and also the in-depth knowledge you we could get from having the same participants over time could help us in facilitating the activities better one interesting finding was also the balance between facilitating and challenging challenging the participants was also very important to keep their motivation during their design activities so this is also linked to participation over time the in-depth knowledge we could get from um knowing the participation participants better could help us in tailoring the activities so we could also challenge them during the technology design activities so in for landing and the website is in our ride dot uea dot no and there is more information about the project there also information about the publications that have been done and if you are interested there is also an opportunity to get newsletters as well the reference used during the presentation and lastly if you have any questions or interested in knowing more about the project or even comments on this presentation and please do get in touch thank you very much thank you very much chris you also made it really good in time um thank you again and i have a question here to you from your point of view what is your opinion about the most important issue when involving participants in this kind of project so um i think that uh their input towards technology uh was very important for for the project um but also in terms of uh of agency and ethics um in disability studies the nothing about us without us the movement has been uh ongoing so so involving the the participants throughout and securing that it is real involvement and not tokenism was um was very important so in this kind of project where the technology will at one point be used by themselves and we got a lot of feedback on the technology um and mostly on things that we could not think of ourselves it could be color or what kind of pictograms were used what was understandable and not so there were a lot of things that we as researchers or designers could miss on that they could give us feedback on yeah and uh and as i reflected uh uh to andina as well it has to do with with what you did say now the user in the center is so easy to say but just again a more of a reflection how important this this kind of research you're doing so in terms of in terms of technology development a lot has been known about the effect of user involvement it can lead to better technology a better user satisfaction but we also see that there is a lot of user gains that participants get from being involved so so it cuts there is two sides where both sides can actually win by involving the user in the design activities as well in terms of learning in time in terms of being a part of society as well and being able to um to being part of to be part of something that is meaningful um and people with disabilities don't have many areas in their lives where they are viewed as experts but uh design of technology for instance is one of those opportunities i think that's excellent to start with that statement and that answer chris because that's really what is what it is all about a big thank great thanks so much chris for your presentation and for this short chat that we have uh now afterwards uh thank you very much thank you very much for having me yeah uh and now we will go on we're having a panel uh the panel discussion based on what we have been hearing here and uh the one that will will uh will do this and organize this and moderate this is root world uh so uh i say i i give the word to you gun hilda and then then the the the the the ones that are gonna be in the in the in the panel will will join uh and right now as well and i will be here as well i will uh uh to say to you all the participants to put questions in there in the chat and uh and i have saved one questions about the definition of welfare technology in norway but we could take that sometime during this half an hour uh put that question in but i i think you have planned to how to start gun hilda so i give i give the word to you thank you bank and uh yes i'm sitting in tromso at the norwegian center for e-health research i'm a colleague of indiana who has already been presented herself and she is also part of the panel the same is helena you all also have met her and i will introduce you for alien tigerson will you present yourself ellen hello can you hear me yes yeah okay my name is elaine diegeson i'm working at the university of agrada at the center for ehealth and i'm also a part of this core group for for this network thank you alien and then we have yvonne ericsson hello i'm irani exxon and i'm a professor in information design at melanon university and i have been working together and for people with blindness for almost 25 years now and in research or in more practical sense as well yeah um we have had two uh nice presentations and i think i will start with one general question to the panel the question is what challenges do we face when it comes to implementing new technologies for people with intellectual disabilities would one of you like to start or should i point at someone yeah alien please yeah i can't just jump into it i think it's a very interesting and important question uh because in this question we maybe can find a solution but i can give some reflections of what we have uh discussed in the inner bay project and in the inner bay project as chris told we are trying to develop new technology solutions and of course we are also dealing with the questions about how to implement this how can our solutions be useful in in the practical world and the one of the big challenges we have seen and have discussed is that it's it's about placement of ownership of the solutions or the technology often very many actors are involved in their lives for persons with intellectual disabilities and we also see that these persons are representing very different organizations and maybe they don't have natural channels for for cooperation and also this solution they require that we cooperate and the big challenge can be in many situation to to place the responsibility one way one problem is to place the ownership and the next one is to who will be the responsible who will make the decisions who will pay for the technology and who will follow up and implement and support the use of the technology so i think that maybe is one of the really big challenges and and very concrete what we are dealing with in the inner bay projects yeah thank you ellen some of you other had comments on this yeah yeah i i will take this from a little bit another angle and i think it also has much to do with attitudes expectations and norms so when we create new technology from the beginning start to think of people with some kind of disabilities and in this case we're talking about people with intellectual disabilities but it's very often also that people with intellectual disabilities also suffers from other kinds of disabilities additional disabilities such as limited eyesight some lack of hearings etc but i think that the most challenging things is to really include different aspects of user interfaces in in for people in regular user interfaces how can they be accessible for people with intellectual disabilities and then we need to have clear interfaces that contain a logical hierarchy where to go and where to look and it's very much the requirements on the layout and the graphical element is it logic is it easy to find and also that i think something is which is missing today is embedded instructions how to use the technology and by that i mean how can you use it more intuitively and by that you can if it's more intuitively to use then it's also more easy for people with intellectual disability but there you also have some problems how to know where you are looking for so how can you present things so it will be obvious for people that don't really don't know what to look for how can it be clear that you start here and i think you you presented very nicely mugula chris about how you work together with designer work together with people with disabilities but i think we do have a challenge here most designers are aware of user-centered design and usability is very important but they don't have the experience of working together with people with some kind of disabilities and i don't even think of that they could gain knowledge from people who will use the the interface or the product in in the end because they are very much into creating a product itself so this i will start with this thank you thank you yvonne uh before i give the word to helena i just want to remind all the members who are listening to us please send messages in chat if you have any questions helena yes thank you um undines and chris's presentations were enormously interesting and also gave a lot of information already about this this question too um but i would i would raise three things knowledge methods and then understanding of the practical and policy levels so when you talk about knowledge that's actually perhaps a pre-implementation stage that we would then talk about because it's quite often so that potential users of welfare health and welfare technology do not necessarily know about the opportunities about the different devices different solutions and their opportunities and how to get them and how to use them and so on and when you talk about people with intellectual disabilities then it's also often their close ones their families who have a big role to play so they would also need much more knowledge than they often have at present and then it's also about the knowledge of implementers so um do they actually have enough uh knowledge about these opportunities and uh for whom a certain device or solution is actually good and beneficial and so on and then about the methods chris already talked about these these different types of methods that are needed to listen to these people's needs but then it's also really about a question of about methods appropriate methods or tailoring the methods for the implementation by the implementers so that they are skilled enough in in tailoring the methods and also following up concerning how the use is actually succeeding success how successful the use is and then about these practical and policy levels um it's very important to take both levels into account as was also discussed in the presentations so um understanding and acknowledging this complexity that was brought up by undine thank you and dna would you like to comment on this are you there indiana yes okay i saw yvonne raised her hand but should i yeah you can just uh comment first yeah uh yeah um maybe i bring up just a new new aspect here too because when you talked about knowledge selena i also thought about actually what we see happening many times is that the there is um a lot of welfare technology and technology stored in the cellar of the people because the child doesn't want to use it and why does the child or it said that the child doesn't want to use it and why does the child not want to use it so it's about actually the core person here the child that you you can create as much technology as you want if you don't if you are not able to address the child in the right way then you also as alien says then you think and yvonne says then you uh will not succeed with all the technology you have around and or you are creating and then again also the people you are depending on as a child with disabilities they actually have to gain knowledge too in order to be able to like family like personal assistant like others um and and that means that um demands also that they are both willing and trained um to to um trained enough to help or grant enough to know by themselves and then we have the aspect that if technology is implemented in this process it has to be in a holistic way like for example um when a child is successful with one technology at home why don't use the same technology at school for example technology that can help a memo planner or something like that uh that can help structure your uh time that can remind you of when uh when does lunchtime stop and this uh uh to be reminded could help you not to become so uh nervous about what happens next what uh what's uh many times happening with um with children with cognitive disabilities so then implementing it at school demands something from kit by the teacher by uh the special pedagogues by by the i.t system by by others so it's going into this or demanding something into a whole more holistic system and then school is not the only institution there are other institutions and maybe there are actually services for the child they go that go across the sectors and where it would be interesting or necessary to actually [Music] actually implement technology across the sector to to give the best service to the child thank you and then sorry von i didn't see your hand uh but uh please no problem i think after after your uh comment we will change topic okay yeah i just want to comment because i think we're talking very much about involvement when we talk about the primary users and in this this case it's people with intellectual disabilities but i think it's very important also to include people around as have been mentioned before it could be either staff caregivers parents etc because if they don't know how to use the technology then there will be no real introduction because i think many times you need to have help and you also have to have to be inspired so as you said dina that is a lot of technology that is not used at all maybe it's not only because of the children it could also because of the parents don't know how to handle it so i think in in this design process i think it's a good idea to to to both involve primary and secondary user to get good results and how they could interact thank you i think i will go to the chat and uh to follow up what bank suggested for the first question that came uh when after indiana's presentation and the question was what is the current definition of welfare technology in norway and how does it relate to ehealth and following by another question saying is welfare technology ex explicitly used in legislation would perhaps alien or indiana from norway tried to answering that or i just can say there are many definitions of welfare technology but the one the one [Music] we related to was the one of noo and 2011 and this is quite broad i could read it in norwegian but it's saying something about giving technological assistance and contributing to increased safety and social participation mobility and physical and cultural activity in order to strengthen the individual's ability to actually to cope everyday activities um it says more things and then um the the question whether this um it could be related to e health then uh and uh i think it can uh in the way that um ehealth also demands a broad a broad definition and um [Music] i i would say it's um both e-head is both the technology used at the home of peop of people in order to um to help uh yourself and to um for a bigger prevent prevent illness and as preventing illness then we can think about very many different um types of patients people with chronic diseases and this could be then then technology and both hospital and municipal municipal healthcare systems can take part in in preventing illnesses remote remotely so i think one okay i'm with chronic diseases no but i i know for example uh children and youth with disabilities can have many conditions that um demand also specialist care and primary health care in i know that the concept of welfare technology is very difficult because when you are doing literature research for instance and trying to find correct search words for what are you going to looking for what kind of research do you want to look for it's uh it's difficult to limit the concept but does sweden and finland have other definitions of welfare technology i know that in sweden they call it health welfare technology in norway we say only welfare technology i think the definition is almost the same yeah yeah i i i would say so or there are many definitions but uh the basic uh features or basic characteristics are the same but the definitions usually do not really include the care professionals point of view so i think that that could be included better alien would you like to say something it's maybe mainly the same as talked about but i think the e health concept is border and it's also especially here in norway i think maybe also the same in other nordic countries i think we have up till now separated between welfare technology and more medical technology or medical follow-up technology that welfare technology is more about safety security coping and living an independent life at home while medical technology and remote distance follow-up by medical technology is more about uh treatment over distance thank you and yvonne yes i only wanted to to to add that also the term welfare in sweden is also kind of a political statement you decided you can't have a health care if you don't have a welfare system so it's therefore also it goes to get a health welfare and health care so uh i saw that there was a another question in the chat that came up and it says uh often one can get money to a project it is not often to get money for implementation in example they based off free to practice the technology what is the panel's view on that so this is actually about moving from the pilot to the to the implementation phase we would like to start i can start because the implementation phase is much more complex and you also need and then we come back to the political decisions you need to have money to implement it and also it's often that when you start to implement it you realize that you come with a small part and it needs often a whole system and maybe they can't connect to other parts in the system so it's it's the implementation on a big scale is often very very complex and i think this is you asking about the challenges i think this is one of the challenges how is it possible to implement it in a system should you start by thinking of the system or should you start in a small scale i think there is a contradiction there thank you elena i saw your hand yes um i agree with yvonne and i would in my view it's um often so at least in in finland that these pilots uh interest people greatly and that's no wonder they are very interesting of course but when you talk about implementation it's often very basic uh issues that we then bump into regardless actually of the technology or of of course there are also technology specific problems but then there are also these very basic issues that you have been there uh for let's say tens of years and they still haven't been solved basically so um that's maybe less uh it's it's kind of more about daily issues and therefore seen as perhaps somewhat less interesting by some people thank you and ellen i was muted i think i have been following some implementations projects and in many of these cases uh i think many municipalities are very eager to solve all the practical issues in the specific implementation and in a way they forget the next phase and also maybe also forget to have a good plans for the next phases about use follow-up have time for for for employers and all the the people in this holistic system to to to have enough resources so it is important to to also have a plan for this follow-up phase and even more than we see today very wise answers from all of you do anyone else want to comment on this okay i think i moved to a last question uh if banked i don't know if there are any more in the chat but i have a question to the panel no no more questions right now no okay okay that's good so another questions why is it so important to no i'm sorry we have discussed that uh the question i was going to ask is how can we further disseminate the knowledge that we have to reach disability practice in in the nordic countries can you repeat the question please how can we reach the practice how can we uh share our knowledge to the to the practice of those who are working with the children and youth with disabilities yeah come on neville thank you i think it we have to we i think we have to involve them much more and as i said before we talking about the primary uses such as that but i think if we involve people also working in the system and make them a part of it and as chris so nicely described that what users gain from being involved i think if you involve people working with these questions in practice if they got involved they would probably also gain some inspirations and get more interested in in taking part of already known or knowledge that already exist thank you yeah helena yes um i would also say that it's a question of information design events special field so finding the appropriate channels and ways to communicate these issues to to for instance let's say patient organizations and policy makers and different kinds of people who have different uh information and needs just briefly and ellen uh much much is said what i was thinking of and especially this uh involvement i think is uh really important because uh persons need to to see the value uh of it and if people see the value they will be enthusiastic and then we will also have ambassadors uh showing colleagues showing appearance showing uh those who need to to to be convinced that this is useful so involvement and not only the end users but all persons around is really important i think well i think we are close to ending this panel discussions and bang it out i'm not sure if you would like to say some closing words but i would like to thank the panelists for a very interesting session thank you all for contributing so well yeah and i thank you thank you again thank you everybody for for contributing you have a nice very very nice and interesting discussion and thank you again chris and undine for your presentations and then this very very important area i just want to just uh comment on what the last two questions you had that i think what you have in norway that we don't really have in other nordic countries is that the welfare technology program you also have the the vehicle for change a roadmap for service innovation fat plan for chanstien macon when you work when you work with insight and anchoring in the in the in the start and that's really where we give more more more or less success when it comes to implementation and also you reach the norwegian center for e-health research to to the municipalities and to the staff where when where the work you do there so i think it's very impressive that you what you do in norway when you look at it from a nordic perspective so thanks a lot for hosting this this webinar again and we will be back with webinars in the autumn we have plans for what we will focus on but if you have ideas what we should focus on later on and maybe one of the webinars this autumn your freedom welcome to to contact us through the uh in in the network and and we will continue with the activities as helena and i presented in the start of this this session and one and a half hour goes very quick when you have having so fun that we have had now so i say thank you to you all and see you again bye you

2021-04-17 05:46

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