Perspectives of People with a Chronic Disease on Participating in Work
Table of Contents
- Welcome to perspectives of people with the chronic disease on participating in...
- To people with chronic disease to participate in work and as I explained...
- Participation well acceded we use focus groups and because to really facilitate...
- Skipped the household work and hire someone to do that for so she was able...
- Their diseases and an a professional is proactive well these are the types of...
- Can increase their knowledge because we measured on baseline after reading the...
00:00
welcome to perspectives of people with
the chronic disease on participating in
work we're glad you're here my name is
angie hunt project manager with the work
wellness and disability prevention
institute and i'll be moderating the
webinar today this webinar is made
possible to the support of the community
gaming grant program through the BC
government as well as donations and
memberships to WW dpi we're waiting for
others to join us I'll go over a few
technical points for the webinar just be
able to hear the presentation through
your computer speakers or through the
conference call line if you dialed in
00:30
please use the question box to submit
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the presentation don't collect questions
throughout the presentation and follow
the presentation with the QA based on
the questions submitted following the
webinar any questions not answered in
the allotted time we'll be answering
distributed after the event our
presentation will be recorded and posted
for free on our website within a week
along with the slides will be emailed
the direct links for all these items
when they're available as I mentioned my
name is Anne T and I'll be moderating
01:02
the webinar in Q&A session our presenter
today is Marlo's voice Marlo's is a
researcher at the cornell institute of
occupational health academic medical
center amsterdam the netherlands her
research focuses on supporting work
participation of people with a chronic
disease the aim of her research project
to support work retention and return to
work by providing occupational health
professionals with information to
optimize their guidance and assessment
of individuals with a chronic disease
and now I'll hand it over to Marla's
01:33
well thank you and you for your
introduction introduction and at first I
would like to thank you the work her
comas and disability Institute for
inviting me to speak about my research
and also I would like to welcome all
people listening to this webinar my
research concerns supporting workers
participation of people with a chronic
disease in which I will tell you about
in this webinar in which I of course
mainly focus on the perspectives of
people with a chronic disease well as
02:03
stated my name is Manu voice you can see
my picture on the right so you can all
see how I look like in real life
I'm also part of research team maybe you
notice the names from other research
project projects Daniel bata young
hoping hi Vince
Monique fling station all focusing on
research and concerning people with a
chronic disease and how to enhance their
work participation I'm based in the
Netherlands which is a country in Europe
02:34
and I work in Amsterdam maybe for some
people familiar some people though not
you can see the flag stating in
Amsterdam some main capital and I work
at academic medical center in a
department coronary institute of
occupational health we focus on both
both enhancing work participation of
people with a chronic disease as
preventing people from getting you from
03:07
their work but my research focuses on
the first part of it in this webinar I
will give you a short introduction of
working with a chronic disease
my research concerning this and how to
enhance the work participation and then
I will mainly focus on the article and
explanation of it like concerning
perspectives of people with a chronic
disease in which I will close with
recommendation for practice and
03:38
recommendation for further research so
first working with chronic disease maybe
you already know information but I'd
like to start with some numbers and
definitions the definition we used for
chronic disease is irreversible
condition and a long duration and
generally slow progression we took the
definition of the World Health
Organization we notice that there is no
formal definition but as we aim to
04:12
conduct research which helps a large
group people we took a very fairly broad
definition
we aim for this s or for the support of
FIFA Huerta chronic diseases as you
might know more than 50% of the world is
faced with a chronic disease one or more
chronic diseases of which examples are
also your prizes heart disease arthritis
diabetes cancer etc the World Health
04:46
Organization has four main types which
are heart diseases cancer diabetes and
primary diseases and in we conducted a
research in a large group of people a
large group of patients in which we
asked what which complaints they
experienced and people experience mainly
05:17
fatigue pain a long time to recover
sleeping problems concentration problems
they have slow start in the morning also
their mood is affected we have
frequently memory problems and so on but
fatigue is the main component of their
fatigue and pain is the main component
of their complaints I want to go back
for a second these aspects for all
05:49
questions throughout various diagnoses
and we saw that many of the complaints
were experienced experienced in
different diagnoses so in this also in
the next slide I use this picture as an
overview also factors as age sex
environment were found to affect the
ability to participate in work and
therefore we aimed in our research to
evidence independent of diagnosis as I
06:24
stated many complaints and factors are
similar amongst different diagnosis and
therefore our goal goal was so paying an
overview
evidence independent of the specific
diagnosis so really gain few factors
interventions and also the perspectives
of people with a chronic disease and how
to support participation without
focusing on a specific diagnosis and we
did that as we know and see that people
06:57
want to work they fail you work even
though they experience limitations we
saw that in the study of Buddle and also
performed a nose own study in which we
this study we performed in which we see
that income or financial independence
but also social context making myself
useful developing using talents is
highly valued by people with a chronic
disease and needs support to participate
07:31
in work so if we summarize this having a
chronic disease negatively affects
participation to work due to limitations
or it generally does not everyone makes
experience limitations and however
people want to participate in work
therefore we focus on how to enhance
participation you work so concerning my
research we aim to provide knowledge to
occupational health professionals to
optimize their guidance and assessment
08:03
to people with chronic disease to
participate in work and as I explained
we provide knowledge independent of
specific diagnosis in our aim to support
work participation of people with a
chronic disease and to explain you the
situation in the Netherlands we have two
types of occupational health
professionals we have occupational
physicians and insurance physicians the
08:32
occupational physicians are in place in
the first few years of sick leave or
experiences in work they guide patients
a David Feist
how they can retain work or return to
work and after two years of because the
employer has to pay the first two years
of sick leave and then they are a match
with occupational physicians and after
09:03
two years insurance physicians are
responsible for evaluation of the
workability of people with chronic
disease so we provide it in for research
and what's the private information for
those two occupational health
professionals you see a behavior change
wheel which is a method to characterize
and design behavior change interventions
in which we start with the gray circle
09:36
we ain't the gray circle are methods to
provide knowledge and we summarize the
evidence into a guideline which you can
see on the left side and we aim to if
you look at the green circle in the
middle we aim to increase the capability
of occupational health professionals so
providing them with knowledge how to
10:07
optimize work participation and
therefore we conducted a first study in
which we searched factors influencing
work participation which factors
irrespective or independent of diagnosis
influence work participation negatively
or positively well you can see it in the
picture and we mainly found work-related
factors and personal factors influencing
10:39
the work participation and characterized
according to the ICF model we saw that
comorbidity negatively affects work
related to body functions having a
higher dysfunction or a lower
dysfunction sorry positively affects
work participation having complaints
less than one year has a positive effect
related to environment having a
11:12
stimulating and supportive work
environment is helpful to support worker
participation also shorted having
shortest sick leave them one year is
positively associated and related to
personal factors having an old and age
being female having a lower education
negatively affects work participation
and having an own positive prediction of
return to work positively it is
positively associated with work
11:42
participation you can find this if you
search my name this is a review focuses
as I told you on independent of
diagnosis and it's also you can find
interventions we thereafter search for
which interventions are effective to
support people in their work also
independent of a diagnosis and we found
that changes in the workplace can really
12:16
affect the work ability or the work
participation research we did a broad
search so we did not find any personal
interventions or other interventions
also no financial intervention
intervention so found only work-related
interventions so changes to the
equipment work design work tasks work
organizations or conditions were
effective and also having case
management's with the work or in the
12:47
employer really helps also having early
contact with the worker by the employer
really helps because they have they
maintained a bond with work having the
health care provider having contact with
the workplace
and really adjusting the workplace to
the individual house and well this is
stating quite the same redesign of work
schedules work organization work
environment assistive technology
13:19
assistive other's colleagues people at
home having transportation to work
really helps to maintain work or return
to work so if we apply this knowledge to
a case to really do what it means in
practice I took a case from one of the
occupational health professionals I
spoke to which is a Jew a woman no 51
years old she has arthritis she is
painting as pain in her hands with each
13:52
his face with morning stiffness lack of
energy has difficulty focusing due to
cognitive problems and struggles with
accepting chronic disease so if we look
at that is at this case then we we know
the factors which negatively or
positively influence work participation
interventions we can see what we can do
for Joe further one Jill works as a
14:24
nurse she has a good relation with
colleagues quite formal relation with
her supervisor and she is unfortunately
on sick leave due to difficulties in
performing work tasks those we look at
the factors there are multiple factors
which can influence
Jill's work participation she has
limitation new to to chronic disease but
also her relation with the supervisor
14:56
and her struggles what is acceptance the
struggle with acceptance do not come are
not found in the review but are found in
the article one perspectives of people
with a chronic disease so we hear about
that later on
and if we look at the interventions we
could maybe helped you with redesign
work schedule maybe adding moments of
15:27
rest we also found that one in
perspectives of people with chronic
disease may be insert adaptations
through work environment adding a case
manager as we found in the systematic
review on interventions having
colleagues to assist her with work tasks
and we found it implementing
interventions as early as possible as we
found in their systematic review and
interventions is important so no to the
15:58
main focus of the presentation
what can jail do herself to enhance her
participation new work so therefore to
research that part we didn't perform
focus groups on perspectives of people
with a chronic disease which solutions
do they have to maintain work return to
work and what support do they need to
find and use solutions to maintain work
16:27
participation well acceded we use focus
groups and because to really facilitate
being the consciousness of individuals
of their own new solutions we noticed
that not not all people were conscious
of the solutions they used on daily or
frequent basis and by listening to other
people they they became conscious of the
solutions they used well we included
17:01
people with the chronic disease as a
research really focus on solutions
factors interventions independent of
diagnosis so we made sure that we had
people of different types of diagnosis
and they needed to work or actively
looking for work so that they were able
to tell about solutions or needed
support
in their work or in finding work and we
17:32
perform the recruitment via GPS and
patients associations which were really
helpful
we included 90 participants as we
performed focus groups until data
saturation of those 90 participants
there were ten men nine women
the average age with age was 50 years
old with a range of 28 years to 62 years
old 14 of 14 of them had employment or
18:05
Percell employed and five of them were
actively looking for work and as you can
see there was quite a wide range of
diagnosis included romantic diseases
kidney disease whiplash visual
impairment psychological complaints
heart disease Lyme disease chronic back
problems I don't even know how to
pronounce the next one diabetes and
18:36
dystrophy we make sure that we as we
wanted to range if they would different
type of kind of diseases that there were
maximum three people pair type of
diagnosis included in the focus groups
so that we could obtain the range we
first asked for the solutions they use
to participate in which we found that
first of all excitation we found out
19:10
through various focus groups that
excitation seemed like a very important
solution to have to space to implement
other solutions it seemed like a first
step for people to really have had space
for other solutions to implement they
also needed to learn how to cope with
the chronic disease
so that they were able to know the
boundaries and know what they were able
19:42
to do in their working life um well some
people said that they started from
scratch to rebuild their life and some
people said that they focused on what
they could still do as you can see in
the quote the D focus and this person
focus on what they can do instead of
what they can do but there are also
people who said they explode they said
20:15
they accepted achromat sees that they
mainly focus on work and had a huge lack
of energy when getting home so we're not
they coped in a different way by putting
their energy work as I said also a huge
part is having insight and what they can
do and what they are able to what their
limitations are and they really needed
20:46
to learn that by experiencing their
boundaries just performing work tasks
and when hitting a boundary day they
know they knew for the next time that
there was too much so really just throw
an error basically and one person said
it's mainly about finding your own
limits the saying goes once bitten twice
shy well I think I've been in at least
10 times already and I think everyone
21:19
knows that in personal life without
chronic disease but this is a huge part
for people with a chronic disease too
because they have to experience this
process all over again in finding out
who they are and what they what they are
able to do and accepting the new
abilities limitations
um also a communication of the chronic
disease due to work environments like
this : disclosing the chronic disease
21:51
some people had the solution to disclose
the chronic disease some people actually
had that solution to not disclose the
chronic disease they had bad experiences
of telling people that they are faced
with a chronic disease in which they
decided to just cover their limitations
but the people who were who found who
felt safe to disclose their disease
22:22
really had to room for other solutions
to implement as well like the work
adaptations and having colleagues to
help them and the people who felt not
safe to disclose their disease really
felt really experienced a lot of
limitations to to treat a chronic
disease also well learning their
22:52
boundaries first which is related to
what I just told but also communicating
those boundaries to colleagues and the
supervisor really helped them as a
person said that the expectations were
set due to the communication of the
boundaries people knew what they were up
to her face and therefore it really
23:24
helps in the contact with their
colleagues and supervisor and one person
said whenever I worked too long my
supervisor says time to go home
then she simply says since you Fe worked
since you've worked half an hour more
today tomorrow you can leave half an
hour earlier so now she really is the
one who sets my limits so she has a
really understanding supervisor who
helps actually helps
23:55
the individual chronic disease in
setting boundaries this is frequently
discussed by people or the participants
in the focus groups like actively manage
their energy levels taking breaks when
needed
I had a person he was teachers our drama
teacher stating that he took naps during
24:25
the day just assigned a task to a
student so he could take a nap
and that way he could really manage his
work which is maybe not appliable for
every job but every person I spoke to
really has solutions to take causes or a
miniature energy during the during the
day also back at home I had a person who
24:55
skipped the household work and hire
someone to do that for so she was able
to maintain her work or prioritize the
things they wanted to do in life so they
knew that which aspects they wanted to
put all their energy in or in which
aspect were less of priority to them
also asking for help actively seeking
25:28
out to colleagues and to the supervisor
stating what they needed stated so um
and what they wanted so people could
really facilitate them in this also in
work adaptations or for work tasks for
them or I actually had a person who
swapped work tasks some works house were
too heavy for them and so she swapped
them for other tasks during the day
26:00
obtaining information actively seeking
for information
by the disease about regulations about
companies who would hire people with a
chronic disease if they were seeking
employment about work amputations about
types of support available if
information helped people to gain
control of their working life and a Bic
one also was having self-efficacy
26:32
believing in equalities they had
communicating these qualities to the
employer as you see in a quote eight
years ago during a job interview I said
I know perfectly well that what I'm
capable of once I'm hired she will see
that I'm extremely I am an extremely
good worker except that in this
situation I also have certain limitation
this was a also a nurse actually and he
27:01
had kidney a kidney disease in which he
had treatment during the night so he was
made not able to perform the night
shifts but he was really enthusiastic
and believed in his qualities during the
day and during the evening shift and he
really communicated that to the employer
and he was hired so and he also stated
it as with others that knowing your
27:33
qualities knowing your abilities really
helped them in believing them and also
developing skills really help people
I had one people stating that he was so
caught up with his chronic disease study
after learning to cope with the disease
he took his social skills training
because he all the attention was
28:04
treating the disease so he had he needed
training to learn to focus on care
volume and again like the outside world
and also
job application skills how do you write
an application letter how do you talk to
future employers and just making
progress step by step really help the
people with regard to the work
28:37
environment having a higher level of
autonomy helped people I had a lady who
said if a deadline I said for Friday for
me it automatically shifts to the
preceding Tuesday or when Wednesday so
that if I have a bad day I can still
finish it on time so having that
autonomy really helps in performing work
tasks also working from home is part of
having autonomy really help people or
working at times that they're able to
29:08
for Jill with traumatic disease well in
her case as a nurse it's may be
difficult but if she's able to with the
morning stiffness start later on the day
it would maybe help her to perform her
work and obviously making adaptations to
the work environment
I have people having technical
adaptations in the computer or just an
adapted chair or an adapted desk
whatever they need it so what support do
29:41
they need to have those solutions found
or used in daily practice well and a
large part of the support is or the
large they really need emotional support
they actually all people address the
need for understanding empathy and
interest from colleagues their
supervisor and the people who got that
support it really helped them in
30:15
performing work they need help in
learning to accept a disease and to gain
an overview and well everything that
comes with it and that help is mostly
given by the
people back at home friends family the
need for understanding was mostly needed
from the work environment colleagues
supervisor
it could be facilitated by occupational
health professionals by explaining to
30:48
employers how important social support
is they also need an information or
supporting information there are so many
information available that they
sometimes lose track or they do not see
the bigger picture due to that they I
have people saying that there are so
much support available that they they
lost track of what was relevant to them
31:17
so the people I spoke to stated that
they need support from occupational
health professional professionals in
what is relevant for them regarding
their information of the disease of work
regulations of types of support
available and people who needed to
return to work really wants information
about companies who accept people with
chronic disease which should at least an
31:49
analyst be African company but in
practice that is unfortunately not true
finally instrumental support they as I
spoke about they need adaptations which
should be paid by someone mostly the
employer or their there are other types
of support available but small
adaptations could make large changes the
32:23
training programs which I minced about
to facilitate skills or to increase
their skills in so that they can support
the maintaining or returning to work
and with regard to the type of support
they this is specified for the
occupational health professionals they
indicated in need for active personal
support based on the request of the
individual and one person stated I
32:59
noticed that there are many targeted
solutions available such as a specific
course or a particular possibility
whereas it should be the other way
around they should listen to you and ask
you what you need to kind of help you
require asking the question up to the
individual whether chronic disease is
part of the solution they all stated a
need for a prepared and skilled
professional they had experiences of
professionals were who were less
prepared or did not know the impact of
33:32
their diseases and an a professional is
proactive well these are the types of
support or the people they need support
from so the social environment is the
people back at home to learn to accept
and to cope with the disease social
supporting and understanding in work is
should be provided according to the
people I spoke to by the manager and
colleagues providing of information
34:04
practical tips but also contact with
others can be provided by patients
associations GP or medical specimens
specialists could really is mostly
contacted for files regarding illness
and work and occupational health
professionals could really help them
with practical tips information advice
to employers about the importance of
social support and supporting retaining
34:33
and returning to work so yes as you
remember we have two types of physicians
or occupational professionals occupation
physicians and insurance positions we
aim to provide with
the most recent relevant information
regarding chronic disease and work
participation and we see that there's
they can really use information in their
35:07
daily practice they have as first people
need to accept a chronic disease which
can be supported by their family and
friends disclosing the disease is
important as in which they should feel
safe to disclose the disease disclosing
makes way for other solutions and
emotional informative and practical
solutions or support is required so
occupational health professionals can
35:38
really help there with regard to the
case what can you kill yourself so based
on the solutions brought by or reported
by people with a chronic disease or the
participants while geo had problems with
accepting the chronic disease so she if
she finds a way to accept that she has a
disease there's probably more room for
other solutions so that could be a first
36:11
step also learning to cope with the
disease and have an insight in what she
is able to do having a clear
communication of boundaries to their to
her colleagues and to her supervisor
asking for help from colleagues maybe
she has tasks in which she has to use
her hands and she has been in her yet
hence maybe she can switch them maybe
36:40
she can form or desk work or maybe she
can how do you say it change certain
tasks maybe there are work adjustments
available to light up to make hard tasks
at lighter
and she can buy communicated in our own
qualities maybe what I told earlier
start later in the day because of her
37:13
morning stiffness and work only the
night shift or evening shift but also
good to mention we performed we focus in
the research on solutions independent of
a disease but there should also be there
are also solutions dependent of disease
which for rheumatic diseases are for
instance medication disease specific
medication for professionals they can
37:45
helped you by asking geo with solutions
yes she has as participant stated that
not the support should be the point of
attention but the help needed from the
individual professional or occupational
professionals can state to the
colleagues and the supervisor then the
importance of receiving empathy and
understanding and how that can be
difficult to manage work they can
38:17
provide her with information on the
disease working with the disease rules
regarding work participation and
available forms of support and she she
can or they can provide her with skills
training more tools to work with the
chronic disease so if we summarize the
entire my entire research is that there
38:47
are various personal and work directed
factors influence work participation
which if they negatively influence work
participation can be changed by work
directed interventions at least for the
work directed into factors
well people with a chronic disease have
several solutions to retain a return to
work but support from our others may be
needed to find and use interventions to
39:17
enhance work participation so if we look
at the wheel we included all the
information in a guideline which well
unfortunately for a lot of people is in
Dutch so maybe there's an English
version one day but you can see it's
actually quite the same of my public
asthma complications
we tried or we strive to increased
capability so the mitch circle the red
39:49
circle is the type of interface
intervention in how to change the
capability and as we had the guideline
we focused on making a training which
you can see on the lower part of the
circle to increase occupational health
professionals capability of using the
information included in the guideline so
therefore as stated we developed a
40:20
training we developed a training
included or in including occupational
professionals we asked them what what
type of information was highly relevant
for their daily practice what could
really help them in it skips so what
could really help them in the guidance
of people with chronic disease and what
was not really already use in daily
40:51
practice and thereafter we asked experts
in the field of training of occupational
health professionals what type of
activities help in learning this type of
information to the target group which is
occupational professionals
and thereafter we perform the training
it stops in which we found that it was
we evaluated after training was a
41:26
feasible approach and we which we found
out that it actually is the next slide
yet the people really found it
acceptable they found it a value to
their daily practice they founded a
contribution to their daily guidance of
people with a chronic disease they also
stated that it can be implemented a
larger scale and we set a flaw in it it
41:58
can increase their knowledge because we
measured on baseline after reading the
guideline and after performing the
training or following your training and
we found in significant increase in
knowledge and skills after performing
training luckily the training is now
implemented nationally so all
occupational professionals will receive
the training so that they are able to
use the information in their guidance of
42:28
people with a chronic disease so but
based on the information or based on the
research I conducted what can I
recommend for breakfast for
professionals really as individual
themselves what they want and need as
individual with solutions they already
have or used or think about to retain or
change work provide them with support in
finding and implements these solutions
and advise employees employers in giving
43:00
the employee empathy are happy to sorry
and facilitating the employee work
adjustments what can individuals do
themselves well it's easier said than
done but learn to accept and to cope
with the disease as it well it seems
like a first step to create space for
other solutions
well find and use solutions maybe learn
from others how they do is such as
believing in oneself asking for help
43:32
energy management and really believe
that you have qualities of your own
which are really useful for daily
practice and and work environments see a
professional who can provide support and
information on additional interventions
what is already out there what can
really help you and when feeling safe
explain the situation to the to your
employer which can facilitate you with
44:02
work adaptations and work-related
interventions with regard to future
research or further research I'm really
curious to which solutions because we
had a quite a range of solutions but
which solution work for whom I think I
saw a lot of people who spoke to a lot
of people who had a quite a large
44:34
autonomy in work so maybe not all
solutions are applicable to people with
lower autonomy and work so I'm really
curious about that and I think there
should be more research to the needs and
wishes of individuals with a chronic
disease and how occupation how
professionals can really address the
needs and wishes of people in their
guidance and I'm focusing on both of the
aspects in my future research after
45:06
obtaining my PhD um with regards to to
take-home message well although people
perceive limitations in participation in
work they generally fail you being able
to participate in work people have
several solutions to participate in work
and I didn't say that in the results but
we also found that they are more than
willing to play an active role there
they want to manage their own disease
45:38
and work participation and support and
guidance may be needed from
professionals to support finding and
using solutions to retain return to work
so I really want to thank you for
attention and I if you have any
questions you can ask me now I I will
try to answer them or you can send me an
email
it's addressed thank you to our audience
46:10
if you have any questions at this time
please enter them into the question box
and the GoToWebinar panel and we'll read
those out loud um a few questions that
came in when helping people become
conscious of their own solutions can you
talk a little more about the process how
do you get people to join the focus
groups what questions to ask sorry is it
do you mean like how can occupy and how
46:42
professionals help people become
conscious of solutions or related to my
focus group specifically um in your
studies what it was no I thought it was
really helpful that while they are
conscious of mostly one solution at
least and they started talking like the
most how do you call it that the
outgoing person started talking about a
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solution and then other people were
again like aha moment like I I I also do
that and then it really helped them in
because some people as you they do it
every day there they lose conscience of
all the things they do on daily basis
and it really helped them to get to gain
an overview of what they do to be able
to work that doesn't make it clear or
47:47
I'm another question that came in in
your research were the focus groups a
success and if so based on which factors
did you see any imported you see any
opportunities for improvements in the
focus groups mmm
well yeah I think they are success in
the way that people felt safe to
disclose their you solutions and it was
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I learned a lot and people left feeling
safe and okay so that's successful and
we also obtain data saturation which is
regarding research also a success what I
learned during the focus groups is for
me at least in while in research they
mostly focus on containing six to ten
people per focus group but I included
48:56
four to five because there's like two
hours it's limited time for for ten
people even jus to speak like for a
short amount of time so it's not like we
we did interviews but there's like a
balance between not speaking at our
having time to speak in two hours so I
think as four to five people is is great
and I which you set for next time as
49:29
well I think that's all the questions
from our audience at this time is there
anything you would like to add following
your presentation wellis um maybe it's
good to know for the audience that if
they interested in this topic
I'm luckily or had well I will do my
defense in two weeks and now I am a
researcher continuing in this line of
research
50:01
so if they're interested there are more
publications to come and mainly focus is
this topic and thanks for listening
obviously thank you too so much for your
presentation