(APPLAUSE)
This morning, we're pleased to launch the initiatives from the project
Carers Count: Support for continence management.
Carers can be of any age and come from all walks of life.
They can be a spouse, sibling, a close or distant relative
or simply a friend.
And carers often support another person
who, because of an illness, disorder or disability,
needs care support to function in life.
And, as Ara mentioned,
in Australia, there are 2.7 million unpaid family and friend carers.
Just a few facts.
The report from the Australian Institute of Health and Welfare
found that in 2009, there were 139,000 people living in households
who always or sometimes required assistance
in managing their incontinence.
Many of these people relied on assistance
from a family member or friend,
and the report identified that there were over 72,000 primary carers,
as Ara defined before,
who usually assisted with managing another person's incontinence.
Most carers are women and are the main source of assistance
for people who are disabled or aged or have a long-term condition.
Carers, as we know, enable many people to live at home for longer.
Primary carers are close fa...
Most primary carers are close family members,
live with the person they care for and are aged between 25 and 54 years.
The higher care needs of people with incontinence
places a greater working load on primary carers
and they spend a longer amount of time in caring
compared to those who care for someone
without a bladder or bowel issue.
Furthermore, carers of people with incontinence
report changes in their friendships, in their sleep patterns
and in their emotional health.
From a survey conducted by the Australian Bureau of Statistics,
'Caring in the Community',
about half the primary carers surveyed
reported they had experienced feeling weary,
often feeling angry, resentful, worried, depressed
and having a stress-related illness as a result of their caring role.
The increased load and stress
continence management places on a carer
has led us to identify unpaid family, friends...
Sorry.
..family...members and friends
as the target group for this year's special project.
So we conducted a literature review
to determine the current research, any gaps that exist for carers,
in order to develop our project objectives and strategies.
So we used the words 'carers' and 'incontinence'
and we searched in six academic databases
plus Google Scholar.
And we only looked at results after the year 2000
for texts from scholarly peer-reviewed journals.
So as a result, 15 articles were included in our review,
and we made sure that they were relevant to our subject
and focused on unpaid and at-home carers.
Reports from key organisations such as Carers Australia,
Australian Bureau of Statistics,
Australian Institute of Health and Welfare,
the Australian... Continence Foundation of Australia
were also included.
We found that
there are many emotional costs
when managing incontinence
as it is a profoundly stigmatising condition
which is shown to have negative social consequences.
It is difficult to separate incontinence care
from the overall care situation.
Incontinence often represents an extra burden,
particularly in the case of the very disabled
or the elderly people with dementia.
Even when elderly relatives don't have cognitive problems,
carers have to frequently remind them to go to the bathroom.
That constant need for watchfulness for continence management
is sometimes deemed as very time-consuming
and stressful for carers.
Although carers perform an important task
for society and for their relatives,
they do so at a cost to themselves, as Ara has pointed out this morning.
Primary carers who usually assisted with managing incontinence
reported changes in their physical and emotional wellbeing
more so than those carers who did not assist
with managing another person's incontinence.
The range of issues experienced
by people caring for someone with incontinence
are social isolation.
Carers are not free to go away with friends and travel,
as they have someone to look after back at home.
They do not invite friends over to the house for the fear of bad smells.
And so day by day, the social bonds weaken,
and more and more, they grow alone.
Physical exhaustion and emotional weakness.
They get tired, is the first and most widespread consequence
of incontinence management,
related to back pain and other problems
derived from frequent physical exertion.
The carers often suffer from anxiety and emotional problems.
The need for practical support, respite and training.
Carers suggested more practical support
to be able to have a break from caring and respite.
Moreover, they reported the need to attend training courses
to learn how to manage the care of their relatives
and handling the leakages.
The literature also show
that care is assisted by a range of formal services,
including financial assistance, respite care, counselling,
care planning and other coordinated services.
Respite care is the major service type
specifically targeting carers.
However, few carers reported using these services,
and there are a number of reasons for that.
The findings from the literature review
informed and guided our project's aim and objectives,
particularly on the need for practical support
and training in better managing incontinence
for the person they care for.
So therefore, the aim of the project is to raise awareness
and improve support and understanding of continence management
for family and friend carers.
And this will be achieved through four key objectives.
Identify methods to improve communication
and the level of information available.
Develop initiatives to improve access to continence information for carers.
Develop a communication strategy to promote the project's initiatives,
and ensure there is appropriate representation of carers
in all of the project's activities.
The project will see support from Carers Australia
and the carers associations,
particularly Carers Victoria, Carers ACT and Carers WA,
which we work quite closely with.
So the strategies we employed were
the conduct of focus groups
and surveys with carers
to identify gaps in information.
Develop a carer-specific webpage
on the Continence Foundation website.
Review the carer resources available
from the Continence Foundation.
Support the Foundation's network
of health promotion officers
based in the States
to deliver local consumer forums
targeting the carer support groups.
Provide information or training
to the carer advisory service staff
in each carer association.
And we identified opportunities
in promoting the initiatives
in partnership with other
organisations and events.
We will need to review the effectiveness of our webpage
and the level of engagement with our initiatives
with an evaluation in six months time.
With the first strategy,
we conducted a survey with the callers
to the National Continence Helpline who identified as carers.
We canvassed their views on the impact incontinence has
on their caring role and identified their information needs.
A survey to 500 callers was conducted
as part of the annual National Continence Helpline
customer service...
..customer satisfaction survey.
Bit of a mouthful!
..with an additional 19 questions.
And these were only sent to those callers who identify themselves
as a carer when they called the helpline.
Of the 500 surveys distributed, 92 were returned,
which is probably a lower return rate than we expected,
but we still were able to glean valuable information.
We also interviewed the helpline staff
on some of the questions the carers tend to ask
and the information that they sought.
So, briefly, what did we find?
Most carers care for one person - 87%.
It was often their husband, wife, partner or their mother.
92% provided a majority of care in this...for this person
and on average had cared for them for more than five years.
Care recipients had a range of incontinence issues,
with the most common being losing urine before getting to the toilet,
leaking urine without meaning to
and needing to get up frequently overnight to pass urine.
They most often used continence pads or pants to manage their incontinence
and only 50% received help from a health professional
for their incontinence.
Respondents identified that the type of information that would assist them
to care for someone with incontinence
include information about financial assistance
and practical tips on looking after someone at home.
So the results from our survey were quite...were reflective
from the findings...on the findings from the literature review.
We also held two focus groups
with staff of the carers associations and with carers.
One was based in Victoria at the end of April
and the other in Canberra at the end of May.
With the focus groups, we aimed to, first, review our carer resources
and identify any gaps for future considerations.
Secondly, to user-test the webpage
for accessibility, navigation and design.
And we will look at that shortly.
And of course, we had a working party.
A range of stakeholders were invited
to guide the project's initiatives and outcomes.
And this included representations from Carers ACT,
Carers Victoria and Carers WA.
And we had carers from each of these States as well.
And, obviously, the Continence Foundation staff and management
were involved.
Their contribution to the project was crucial
in ensuring relevance and quality of deliverables.
The outcomes of these activities,
supported by the findings from the literature review,
informed the topics and the content
included on the new Carer webpage
and the other initiatives developed as part of the project.
So I will now hand over to Danyel.
DANYEL: Thank you, Nives.
So as Nives mentioned,
we launched a...are launching today
a new Carers webpage.
Now, this webpage sits within the Continence Foundation's website -
continence.org.au -
and it's a comprehensive resources for carers,
with general information about incontinence,
practical caring tips and videos, fact sheets and useful links.
The topics chosen were skincare, dementia,
practical caring tips at home,
products and financial assistance.
And these were based on feedback
from the National Continence Helpline survey
and consultation with key stakeholders
as being important to carers.
Also as part of the initiative,
a review of the key resources for carers for people with incontinence
was conducted to ensure concise information, relevance for carers,
practicality of advice and consistency of messages.
These resources included
the DSS 'Caring for someone with bladder and bowel problems' booklet
and the Continence Foundation's
'Caring for someone with incontinence'
and 'Where to get help' fact sheets,
of which are in your bag today.
The participating organisations in the review
were Resthaven South Australia, Alzheimer's South Australia,
Carers ACT, Victoria and WA,
including representation by the continence resource centres,
the National Continence Helpline,
CFA Health Promotion offices
and CFA Consumer Advisory Committee.
A number of continence nurse advisors and carers
from Victoria, WA and ACT also participated in the review.
Yep.
The findings from the review was largely favourable,
with design, content and language style
found suitable and relevant for carers.
Carers are more concerned with the practical elements
of managing episodes of incontinence, rather than the clinical details.
This includes finding the right equipment and where to get it,
who to contact when help is needed and what help is available.
Some carers found the current resources
predominantly focused on aged care,
particularly those caring for young children or teens with a disability.
While some effort was made to close this gap,
further development will be required on disability and incontinence.
This resource review is ongoing,
with the 'Funding schemes for continence products' fact sheet
also currently being reviewed.
Now, all of these, as I mentioned,
are available as free downloads on the continence.org.au website
or can be ordered through the National Continence Helpline.
The experiences of the resource centre managers
and Continence Foundation's health promotion officers
in providing information sessions to carers
fed into the development of a PowerPoint presentation for carers.
Now, this presentation will be used by the health promotion officers
and resource centre managers to present to local carer support groups
and resource cen...and... to provide face-to-face interaction
and promoting the new carer resources.
The presentation will cover the basics of incontinence,
continence assessment and management, continence aids and equipment,
and financial help.
The Continence Foundation also developed a short survey
for the carer advisory service team
to determine if there is a need
for information or training on incontinence
and what is the most appropriate approach to take.
The feedback received supported the development of a short video
for their carer advisory staff.
The Continence Foundation have scripted and filmed a short video
which outlines the role of the National Continence Helpline
and provides advice in helping to identify callers
who may be managing incontinence for the person they are caring for
and how to raise the issue of incontinence with callers.
It was then decided to widen the scope of the video
to include other health-based telephone services
to broaden its application.
The Carer Project is supported
by this year's World Continence Week theme -
'Tell someone who cares'.
The theme encourages people affected by incontinence
or those caring for someone with incontinence
to seek help by phoning the National Continence Helpline.
There are carers and health professionals
working in the community acting as spokespeople
around the States to take up media opportunities.
A double-sided poster is available, and there is a copy in your bag,
which can be displayed in your workplace
during World Continence Week, or for ongoing promotion.
There are free resources that can be ordered through the helpline
to distribute to your clients
or to assist with any promotional activities you may be running.
And these resources can be ordered on an ongoing basis.
NIVES: Thank you, Danyel.
We are very pleased with the initiatives from the project
and we hope over time, with the support of our members,
that we're able to further increase the level of awareness
that help is available to carers and to those with incontinence.
So we thank you for listening and thank you for your time.
(APPLAUSE)