hello everyone Louise Hickson here I'm delighted to be
speaking to you in this British society of audiology very exciting format of the
e conference and you can see here that the topic that I'm going to talk about
today is family-centered Hearing Care and getting you to think about three
people in the audiology clinical and encounter not being a crowd so hence the
title three is not a crowd and I'm going to stress the importance of involving
family so even though I'm presenting today what I'm presenting on is largely
the work of of the whole group of us here at the University of Queensland in
Australia and you can see the names of my wonderful team of colleagues and
collaborators on that first slide so it's all about family-centered care but
who are family and family is defined in this health care context very broadly
it's any individual who plays a significant role in a person's life
and so often they are called significant others although I I do tend to prefer
the broad term as family and family is defined as two or more persons who are
related in any way be it through a continuing a biological relationship or
it could be legal or it could be emotional I'm sure we can all think of
people that we consider family who are not biologically related to us and the
same applies for the patients for the clients that you see in your clinical
practice they will have family who are important to them and what I'm talking
about today is engaging those family in the hearing in hearing care so I hope to
answer these questions and I hope in answering these questions I am a little
bit provocative and get you to think about what you can do about engaging
families so these are the questions why am I here talking about family-centered
care why might that be important looking here about adults and family-centered
care that's the focus I'm going to then answer the question
what do clients families and clinicians want in hearing rehabilitation how do
they want to be engaged and thirdly what actually happens in adult hearing rehab
our family there or are they not there and finally the big challenge
how can family-centered care be implemented now you can see the little
evidence stamp on that slide and point of that is to remind me to say that what
I'm talking about is not just touchy-feely in a way it's just not my
idea of what is a good thing to do it's firmly based in the evidence and I hope
that by listening to my talk you will hear what that evidence is and think
okay well how do I need to apply that then so this is an evidence-based story
and I'm going to talk to you about the background is a six a series of six
studies that provide the context for family-centered hearing care
okay so first question why talk about it now I have evidence that relates to this
from two key studies and the first is a study that we did in our group about
factors influencing hearing help-seeking so influencing which clients which
patients come along and seek help and then when they do who is successful so
what are the factors that influence hearing aid outcomes and we published
much of this work in a special issue of the International Journal of audiology
in 2014 we had four groups of participants they all had a hearing loss
there were three hundred and seven in total and you can see there the split at
the different groups so the first group were people who had not sought help for
their hearing for 55 people and they had hearing loss but they hadn't done
anything about it then in group two we had what we call consult is so ninety
two people who had been to see someone about their hearing loss and typically
they'd been offered hearing aids but they had decided not to take those up
the third group are people who did go on get fitted with hearing aids but when we
met them within two years of that appointment they were no longer using
those hearing aids so they were unsuccessful hearing aid owners and
finally the Goldstar group group 4 the successful hearing aid owners in the
long term you can see there the breakdown the average age was 73 which
is the average age of first-time help-seeking in Australia today and it
probably is similar in the UK and majority of them had mild hearing loss
so there were four groups and what factors were important now that we
looked at many factors and the relevant facts that I want to talk to that about
today that was important for both health seeking and for the outcomes of hearing
aid fitting was the extent of family support so if a family was positively
supportive people were more likely be in one of the groups who had sought
help for their hearing us so groups two three or four so positive family support
drove drove help seeking in these participants another key finding was
that the difference one of the differences between groups to be who are
unsuccessful with hearing aids in group four who were successful one of the big
differences was the extent of family support so if family were positively
supporting the person with the hearing loss they were more likely to be
successful using hearing aids now many of you no doubt have that experience
from your clinical practice but it was a novel finding in a research sense and so
the evidence is there their input makes a difference it makes a difference on
the patient journey so or sense that in what was the evidence now this is work
around the impact of hearing loss so hearing loss affects not just a person
with the condition but their family their significant others and this
concept is called third party disability and what it means is although the spouse
usually it's around spouses but not only spouses although the spouse does not
have a health condition they may experience activity limitations and
participation restrictions as a result of the health condition that they of the
significant other so we have examined this in couples and the evidence is in
100 spouses so we had a hundred spouses with hearing impairment and their
partners did not have a hearing impairment we didn't want that to
complicate matters so the partner had normal hearing but ninety four percent
of those spouses experienced some third party disabled at least some
communication problems because their partner had a hearing loss now look they
were mostly mild but they were there and the disability typically revolved around
emotional consequences so they experienced frustration and some cases a
lot of frustration because of their partner's hearing problem communication
activities were different didn't talk as much around the house and
finally it affected their everyday activities and typically what that was
was something like television viewing which as you all know is something
people typically do together as a couple and the volume of the TV is an issue for
the person who doesn't have a hearing loss so that those two bits of evidence
the importance of family and also the impact of the impairment on the family
member mean that it's important to engage
families in hearing rehabilitation so we thought well the evidence is they should
be there and then we wonder well what do they want what is it that clients
families and clinicians want do they want family to be involved these
theories be thirty three and four were qualitative in nature so we interviewed
adult clients about what they wanted audiologists and then we had some focus
groups with family members and with clients so we had a number of studies
about what if families are involved how should they be involved and what are the
barriers and facilitators to having them there the first of all just to look at
this particular model that Caitlyn Grinnell a PhD student and now a
graduate of mine worked on and she interviewed people with hearing loss
about what they wanted what sort of what was patient-centered care to them and
this is the model that she came up with but at the heart of it is the
therapeutic relationship so what the patients wanted was a relationship with
their clinician but around the outside what you'll see of a sort of three eyes
that relate to this therapeutic relationship they wanted their care to
be individualized they wanted to be informed about the process and the
decisions they had to make but importantly the little involve triangle
refers to the fact that they indicated they wanted their families to be
involved in rehabilitation so they were saying that family should be involved so
this is people with hearing loss
there are many quotes in relation to this but I just wanted to show you one
exemplar in this very short talk and this is a classic comment bag by one of
the participants in which he said technical audiological skills are
assumed but interactional skills are valued so what was important to them was
the clinicians ability to engage with them and to engage with their family and
I think it's really important that we will always remember the importance of
communication so this is I'm the focus group study where we had more discussion
about how could they be involved and families and clients talked about that
the clinician having this great opportunity to involve the family you
could increase their knowledge and understanding of hearing impairment
you could talk about the role of communication in rehabilitation so there
were sort of five themes all of welcoming to but they did talk
particularly about what the audiologist could do so the third theme there and
the audiologists having a really commanding opportunity to engage family
and these are the ways that could happen I thought the audiologist could
facilitate the involvement the audiologist always called us in together
okay so we organized the appointment that the audiologist always called us in
together there was always the chair for us not just for the patient so they felt
it was important for the audiologists to invite the family in and to include them
I thought the audiologist could help build understanding and empathy how do
we get ourselves as our partners here at the elements it's got to give them a
reason and the reason is you'll understand him or her better
so the audiologist can help that understanding the audiologist can
provide education it would be good to be there to hear the unbiased professional
opinion I think it's important to provide education but I do want to point
out but it's tempting to think involving family is all about educating
it's not just that remember that they experienced the impact of a hearing
impairment - in a way they need treatment and help as well so it's not
just about educating them and finally the comment on the left there the
importance of including family in goal setting that is a fantastic thing to do
if you could come up with joint goals between a couple about what they'd like
to achieve you're more likely to have success in the rehabilitation process
this is what I just talked about so audiologists had a great perspective on
this they were very positive the ones that we interviewed there's a classic
quote you can see there from the from an audiologist that we included in the
title of the article this is a partnership between all of us and if you
can start to think about family centered care being a partnership that you
established between you the patient and their families that would really be a
positive move so audiologists talked about developing a shared understanding
so that everyone's knows what's going on sharing the responsibility
rehabilitation doesn't involve one person it's a joint effort and finally
they talked about outcomes the best outcomes being obtained when families
take an active role and that comment that experience of the audiologists
absolutely validates the quantitative study we did that showed the
relationship between positive family support and outcomes so I think that
audiologists know it's important to engage with families
okay I'll give you another reason why family should be there this is study
five this is about the importance of involving family from your practices
point of view okay it can make a difference to the business and this is
an article recently star by Singh and Launer which was a study done in the UK
looking at the effect on here of sales if you like hearing aid adoption rate
when a family member was present at an appointment as opposed to in a person
attended alone and what you can see here is that there's a 13% increase if you
like in hearing aid adoption rate when the significant other attends the
appointment it could be a multiple number of reasons for this and and this
study didn't really look into those it's just it's big data and it's showing the
results but think about it this makes a measurable difference to your practice
and in you know it increases the uptake of hearing aids and that that is a
positive thing to for people with hearing loss and for families
okay so it's important it's important for people with hearing loss it's
important for family it's important for your business but does it happen what
actually happens and we've done a series of we've written up a series of papers
about number of appointments we videotaped we're occasionally a family
member was present and we were interested to see how they were engaged
so we had 63 initial consultations from 26 fantastic audiologists who agreed to
let us videotape their appointments and you can see that in only 17 of the 63
appointments did a companion or a family member
attend so they're not coming to these consultations very often this was an
initial appointment and maybe they come along later but they weren't for fitting
or for follow-up but they were to these appointments which seems a missed
opportunity in light of the evidence about the important role that these
people play so what happened when family did come so this is a summary of a lot
of research on this just to give you the main points they didn't come very often
so in only 1750 ribbons were they there and when they were there they were often
in the background they were not typically invited to join the
conversation so the clinician and the client spent most of their time talking
between themselves and the family member was on the was on the outter if you like
not included so what happened in those instances was that when they weren't
included and that was usually the case was that the family member
started to button so I've written it here in very young nice research terms
they self selected to speak but if you can think of that in terms of them
butting in and interrupting that's exactly what they did because they
weren't invited to give their opinion they interrupted they responded to
questions from the audience directed to the patient because they
wanted to get their message across they self initiated expansions on the
patient's turn so let's say a patient said I don't have any problem with my
hearing it interrupt and say yes you do and they would also self
initiate questions okay so they they'd say they'd ask things because they
weren't invited what typically happened then when they did this interrupting was
that the audiologist gave them just a fleeting acknowledgment not much of an
acknowledgment and quickly shifted the conversation back to the patient so all
of that showed us that it looks like they're actually not coming very often
to appointments and they're not involved when they do so here's the challenge for
you what can you do to bridge this research practice gap okay
there's evidence that it's important but it doesn't seem to happen in practice
what can you do and we know that it takes 17 years for just 14% of
scientific discoveries to reach clinical practice so you know there is a gap what
can we do about it let's address it now now it's something within your control
I hope is within your control so how can you do it so I'm absolutely passionate
about implementation and to try and get people with little doing something about
it I've been working with Phonak and and other groups to find a way to get this
to practice and Phonak has been sharpening championing an expert circle
a family centered care expert circle and we've had a number of presentations and
webinars and papers in the hearing review it's it's more of a magazine type
of article about engaging families and how you can do it so I'm going to throw
out some simple steps and throw out the challenge so a success and these look
deceptively too easy but think about it how do you get family
in the room how do you get a higher percentage of family attending
appointments when we ask clinicians they usually say it's less less than 50
percent of the time it's usually they estimate around 30 percent how do you
get family there we would argue you have to invite them okay you have to invite
them in when your receptionist or whoever it is makes appointments does
that when you and them a letter and so they have an
appointment you need to say it's important for a family member to come
along with you so first step think about in your practice how can you get family
in the room second challenge if they come where do you put them you have to
set up the room to welcome them have a chair have them sitting equally with the
patient and with you not as an outsider we often saw the family if they attended
sitting at the back of the room sitting on a chair behind the clinician in the
client so think about that what's what welcomes them and finally last
suggestion and one we've done really works well it's a way to stop the
butting in start the conversation differently start by saying to both
people as they come in to the patient okay I'm going to find out all your
details and I'm going to find out your story first and then you say to the
family member and then I will come to you I really want to know your views and
your perspectives as well but you're making it clear from the start that the
family member will get a turn and what happens when you do that is that they
don't interrupt so it's a way of structuring the conversation so that
everyone has a turn and it stops that that awkward situation where the family
member feels they need to interrupt I hope in this presentation which was
meant to be short and sharp and to get you thinking that you that you will take
up a challenge that you will think about bridging the gap and how you can involve
families and if you'd like to know more and I hope you would like to know more
you can look at our series of articles in the hearing review you can watch out
for a new book that I'm co-authoring on patient and family-centered care and
coming out in 2018 and of course I would absolutely love it if you contacted me
with any comments ideas questions or thoughts thank you very much for your
time you
you
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