REPORT for Carers Needs in the Chronic Care setting Needs … · · 2015-07-07Carers Needs in the...
28
Carers Needs in the Chronic Disease Setting: Pilot Project Report 2014 South Eastern Sydney Local Health District
Transcript of REPORT for Carers Needs in the Chronic Care setting Needs … · · 2015-07-07Carers Needs in the...
Carers Needs in theChronic Disease Setting:Pilot Project Report
2014
South Eastern SydneyLocal Health District
Acknowledgements
Carers Needs in the Chronic Disease Setting : Pilot Project Report has been prepared by
the Carers Program, on behalf of the Chronic Disease Management Program (CDMP) –
Connecting Care in the Community SESLHD. Thanks are extended to everyone who
participated in the project, especially the carers who freely gave their time. In particular, it
is important to acknowledge the contributions of:
Carer Program
Coordinator and Project Officer Marie Le Bechennec
Manager Janice Oliver
Chronic Disease Integration Unit
Manager Linda Soars
Chronic Care Coordination Manager Deborah Kelly
Medicare Local
Chronic Care Coordinators
SESLHD Chronic Care Teams
Copies of the report are available online at
http://www.seslhd.health.nsw.gov.au/Carer_Support_Program/default.asp
June 2014
Contents
Summary .................................................................................................................1
Background ............................................................................................................2
Review of health data ............................................................................................2
Description of project ............................................................................................3
Aim ......................................................................................................................... 3
Objectives ............................................................................................................... 3
Measurable Objectives ........................................................................................... 3
Scope ..................................................................................................................... 3
Key Stakeholders .................................................................................................... 4
Methodology ........................................................................................................... 4
Results ....................................................................................................................6
Demographics ......................................................................................................... 6
Quantitative results ............................................................................................... 10
Qualitative results ................................................................................................. 16
Discussion ............................................................................................................ 18
Potential Implications for Chronic Disease Staff .............................................. 20
Conclusion ........................................................................................................... 21
Appendix ............................................................................................................... 22
References ............................................................................................................ 25
Page | 1
Executive Summary
In 2013 the South Eastern Sydney Local Health District (SESLHD) Chronic Diseases Unit and
Carers Program collaborated to employ a Project Officer funded through the Connecting Care
Program to facilitate the SESLHD Carers’ Needs in a Chronic Disease Setting: Pilot Project.
Carers have been identified as our ‘colleagues in NSW Health’ (NSW Health, 2013, p2) and play
an important role in the support and care of people with a chronic disease. The Connecting Care
Program provides coordination and support for people with chronic disease in the community.
They are in a key position to consider the needs of the carer.
The Project included a survey to identify areas of need that carers of people with Chronic Disease
experience. The analysis of the data assisted in the development of four recommendations to
improve engagement and support of carers and service provision.
For many carers the positive aspect of caring was being able to keep the person they cared for at
home. Carers felt a strong sense of duty and affection for the person they cared for and a
willingness to fight to maintain optimal comfort at home for as long as possible. As a result of the
unpredictable nature of caring and the practicality of living day by day carers found it difficult to
plan ahead. This included looking for assistance in the home, accessing respite, carer support
groups and advance care planning. Overall, carers surveyed stated that information and caring
reassurance from health professionals was held in high regard.
The Project provided carers an opportunity to step back from the caring role, to be informed and
empowered to make long term decisions. Carers play a pivotal role in the long term care and
management of the patient, the care given outside hospital can help prevent an admission to
hospital. By including carers and the detailed knowledge they have of the person they care for staff
are able to develop realistic and meaningful treatment plans.
The following recommendations have been developed.
1. Carer competency training for all staff in the chronic disease teams
2. Routine carer assessments
3. Improve carers’ access to information
4. Identification of carer specific responsibilities within the Chronic Disease team
Page | 2
Background
Carers Needs in a Chronic Disease Setting was a pilot project initiated to evaluate the
identification and support of carers of patients within the SESLHD Chronic Disease Management
(CDM) Program. The NSW Severe Chronic Diseases Management Program which encompasses
Connecting Care, is focused on five major chronic diseases of interest that are recognised as
having a major impact on the burden of disease in NSW. Furthermore, these conditions have been
demonstrated to have improved outcomes through CDM approaches. The diseases of interest are
chronic obstructive pulmonary disease (mainly emphysema and chronic bronchitis), coronary
artery disease (also known as coronary or ischaemic heart disease), diabetes, hypertension and
congestive heart failure.
Connecting Care provides a targeted response for people with chronic disease, who are at high
risk of unplanned admissions to hospital. It incorporates a range of strategies to address the
management of the disease and reduce individual client’s risk factors and better connect the client
with their GP, specialist or other health providers. Strategies include coordination of services, face
to face assessments by the Carer Coordinators, as well as telephone monitoring through
Healthways Australia.
NSW faces an increase in the aged population, making the role of carers increasingly important.
By 2016 in the SESLHD fastest growing age groups will be the 70-74 age group (+36%), the 75-79
age group (+30%), followed by people aged 85 years and over (+18%). (SESLHD, 2013, p6).
These groups are most likely to experience chronic disease requiring intervention and support.
The NSW Carers (Recognition) Act 2010 recognises the valuable contribution carers provide.
Carers are pivotal in maintaining optimal health for people with chronic disease. This may include
maintaining medication regimes, attending appointments, providing personal assistance and
emotional support which can contribute to a reduction in unplanned admissions and re-admissions
to hospital for the care recipient.
In 2007, using the Australian Unity Wellbeing Index, Professor Cummins reported that carers
experience the lowest levels of collective wellbeing of any population group and also that carers
are more likely to experience depression and chronic pain than the rest of the population.
(Cummins, Hughes, Tomyn, Gibson, Woener and Lai, 2007)
The project was developed to gather and analyse local data on the needs and wellbeing of local
carers of people with chronic disease.
Review of health data
Daatland’s (1996) findings on the impact of ageing populations, suggested that Australia’s future
will have an increased aged population with a subsequent increase in the need for carers. Locally
this change is evident in the census data. According to the 2006 Census, (ABS 2006), 64,411
people identified as carers from within the SESLHD as opposed to the 2011, (ABS 2011), Census
where 77,767 carers were identified within the same district. This is an increase of 13,356 carers.
Access Economics, (2010), estimates the cost of replacing the informal care provided by
Australian carers would be over $40 million per year. Within the context of an ageing population,
the number of carers needed to provide care will increase. These changes highlight the need for
carer’s support and recognition in partnership with health staff.
Page | 3
Kess-Bartelmes & Hughes (2004), conducted studies which compared the predictability of the
health trajectory of chronic disease patients to oncology patients. They found the complexity of
chronic disease and its co-morbidities rendered a patient’s health trajectory more difficult to
predict. In particular the issues of cardiac and renal impairment increased the risk of unexpected
acute events such as stroke, which could drastically change the patient’s care needs or their
perception of quality of life.
Description of project
Aim
The aim of the Carers Needs in the Chronic Care Setting: Pilot Project was to identify the needs of
carers, to improve recognition of carers within the Chronic Disease Integration Unit and key
stakeholders, including Medicare Locals. This would include the development and implementation
of practices which reflect the principles of the NSW Carers Charter, especially (m) “carers
knowledge and experience should be acknowledged and recognised”. (New South Wales
Department of Family and Community Services, 2010, p15)
Objectives
• Identify gaps/needs of carers of those with chronic disease within the SESLHD.
• Develop strategies to improve health staff response to carers within the Chronic Carer
setting.
Measurable Objectives
Objective Indicators
(Impact evaluation)
1. To educate chronic disease team
about the NSW Carers Act 2010
Increased distribution of Carer Resource
packs
2. Undertake needs analysis of chronic
disease patient’s carers
Completion of the questionnaire by 50
carers of chronic disease patients
3. Develop potential strategies to
address the gaps identified
Strategies developed in partnership with
key stakeholders
4. Project completed Report distributed
Scope
The Project Officer identified carers, obtained verbal consent and interviewed 50 carers from both
sectors of the SESLHD. The Project Officer initially recruited carers referred from the Connecting
Care Coordinators. However, Kurranulla Aboriginal Corporation, Heartlink (Prince of Wales
Hospital) and Southcare also participated in the latter stage of the project to provide a sufficient
number of carers to survey.
Page | 4
The target group were those caring for someone with a chronic disease, from within the SESLHD.
This included young carers (between the age of 8 and 25 years old), CALD carers, Aboriginal and
Torres Strait Islanders carers and working carers. All participants stated that they did not need the
aid of an interpreter to complete the questionnaire via telephone.
Key Stakeholders
The project provided an opportunity for partnerships to be developed and strengthened between
key stakeholders and the potential to increase provision of support for carers of those with Chronic
Disease in SESLHD. Partners included:
• SESLHD Carer Program (Marie Le Bechennec - Project Officer)
• SESLHD Chronic Disease Integration Unit
• SESLHD Medicare Locals - Connecting Care Coordinators
• Identified carers
Methodology
The Project Officer was employed for a total of 26 working days, in two blocks. The Project Officer
working one day a week for 13 weeks, From April 2013 - July 2013. During this time the Project
Officer met with key stakeholders, designed the questionnaire, recruited carers and carried out the
interviews and analysed the data. The project Officer worked one day a week for a further 13
weeks, from August 2013 - October 2013 to develop the strategies and recommendations and
complete the Project Report.
The Project Officer telephoned the carers, completing a directed quantitative interview and three
qualitative questions at a convenient time nominated by the carer. At the end of each interview,
participants were asked if they would like a resource pack to be sent to their home with information
on support services tailored to their individual circumstances. Over two thirds of the participants
agreed and were sent information appropriate to their situation.
Carers nominated by: Number:
South Eastern Medicare Local – Sutherland 20
South Eastern Medicare Local - Hurstville 2
Eastern Sydney Medicare Local 6
Heartlink – Prince of Wales Hospital 15
Kurranulla Aboriginal Corporation 0
Prince of Wales Hospital – Primary Care Team 5
Sutherland Heart and Lung Team (SHALT) – The Sutherland Hospital 2
• Description of questionnaire
The directed quantitative interview, involved a series of closed ended questions (Appendix 1).
Three qualitative questions (Q.5, 6, 7) were asked to provide an opportunity for the carers to
express their feelings about their caring role and provide insight as to whether they viewed their
caring role as separate or a component of the relationship they had with the person they cared for.
Page | 5
Questions in the telephone interview were in the following groups to facilitate the analysis of data.
Carers were not obliged to answer all the questions and were able to cease the interview at
anytime. The groups were:
- Demographics
- Physical wellbeing
- Psychological wellbeing
a) Caring role (included one qualitative question)
b) Access
c) Services and Support
d) Quality Improvement (comprised of two qualitative questions)
• Limitations of project
Time: Significant time was required for recruitment of carers and gaining their consent to
participate in the survey. This impacted on the numbers of carers recruited as the project was
short term, with the Project Officer working for a total of 26 days (5 weeks and one day).
Sample Size: The sample size was quite limited, with a total of 50 carers interviewed. This is a
very small percentage of carers identified as living in SESLHD in the 2011 census.
Page | 6
Results
Demographics
The sample size of 50 carers from the SESLHD provided the following data that was collected and
analysed. SESLHD covers a total of nine local government areas (LGA), highlighted in green on
the map below. A total 26 participants were living in the northern sector of SESLHD, which
includes Botany, Randwick, Waverly, Woollahra and City of Sydney LGAs. Twenty four
participants resided in the southern sector, which includes Sutherland, Hurstville, Kogarah and
Rockdale LGAs.
Figure 1 Green area represents the SESLHD.
Aboriginal and Culturally and Linguistically diverse carers
Figure 2
Percentage of Aboriginal and Torres Strait Islander carers surveyed of the total 50 participants
within the SESLHD.
2% Southern
Sector
4% Northern
Sector
6% Aboriginal
Carers
Page | 7
Figure 3 Country of birth of the carers interviewed.
Figure 4 Breakdown by language the carer uses to speak to the care recipient .
The carers interviewed were born in eight different countries including Australia (figure 3).
When questioned about the language spoken with the care recipient, a greater proportion reported
speaking a language other than English. Care recipients may experience language barriers to
health services and supports, relying on their carers to interpret and explain information. This can
impact on carers and care recipients’ ability to access and understand information, both translated
and in English.
According to the 2011 Census, 26% of residents were born in a non-English speaking country.
Healthcare in Australia has its own imposed culture, which promotes truth telling and autonomy.
These beliefs run parallel or clash with some other cultures, providing obstacles to comprehension,
access and appropriate management of chronic disease.
Australia
U.K.
Greece
Egypt
Portugal MaltaItaly
Cyprus
Country of birth
English = 25Greek=6
Other = 8
Language carers speak to care recipients
English
Greek
Portugese, Arabic,
Italian, Spanish,
Serbian, Cantonese,
Polish, Maltese
Page | 8
Figure 5
There was a significantly higher number of female carers compared to males amongst the
participants (figure 5) which reflects findings from the 2011 Census (ABS, 2011) Census data
shows that this inequity slows after the age of 75 years, where the difference between male and
female is very small.
As participants were not asked what their age was other than over 65 in the survey, it is not clear if
this was also true of the population surveyed.
The relationship the female carers interviewed had with the care recipient was evenly divided
between spouse/partner and daughter. The high proportion of females could be linked to socio-
cultural care expectations of female family members, where caring is seen as part of the role of
wife or daughter.
These findings were similar to findings outlined in The Greek Caring Journeys Project (UWS,
2013).
Researchers from UWS found many caring parents from a CALD background felt caring holds a
great sense of familial duty.
0
5
10
15
20
25
30
Male Female
Male to female carers and the relationship to
the care recipient
Daughter
Son
Spouse/Partner
Page | 9
Figure 6
56% of the carers interviewed were 65 years of age and older. Their own aging combined with the
physical and mental demands of caring increases the risk of the carer developing ill health. This
could limit the ability of the carer to continue to provide care in the home. Interestingly couples,
who were of similar age though with different ailments, felt that they cared for each other, rather
than one being carer and the other care recipient.
0
5
10
15
20
25
30
10-24 yrs 25-35 yrs 36-45yrs 46-65 yrs 65+ yrs
Age of Carers Surveyed
Page | 10
Quantitative results
All participants were given the option of passing on any questions. Not all participants answered all
questions with six of the 50 carers surveyed stating they did not feel they had an answer to give on
various questions.
Figure 7
The majority of carers had not had contact with social work services, however more than half had
previously received carer information.
Carers Wellbeing
Figure 8
0
10
20
30
40
50
60
Never Had received Received
Previous support and information
Carer Information
Social work contact
58% Carers prioritise the care recipient's health above their own health
40% said they don't have the time to look after their own health
14% said they receive respite
12% care for more than 1 person
4% said cost was a factor
48% had never applied for the NSW Carer Allowance
Page | 11
Access
Carers were asked about aspects of health literacy, including whether they understood the
information provided both verbally and in written formats. Reasons for this included poor eyesight,
poor level of English as well as the use of jargon by the health professionals. Less than half the
carers had use of the internet to source information, or were connected into any community
services. Even fewer carers had any contact with other carers or with Carers NSW.
Figure 9
Health Literacy
16% had trouble understanding what the Health Professional said
16% had a problem reading
written information
8% due to level of English
8% due to poor eye
sight
12% due to medical
terms or language
Links
40% of carers have access to
the internet
44% of carers are linked in
with local NGOs and local
services
Contacts
14% of carers have contact with other carers
2% were members of Carers
NSW
Page | 12
Participants were asked how comfortable they felt to ask questions to
health professionals
Figure 10
Counselling and respite
Figure 11
Carers who received counselling were more likely to have used respite. Overall uptake of respite
was low.
4% said they felt
comfortable most of the
time asking health
professionals questions.
86% said they always felt
comfortable asking a
health professional
questions.
Page | 13
Multiple caring roles
Figure 12
The Greek Caring Journeys Project (UWS, 2013) found many older Greek female carers who were
caring for their husbands and partners were often also caring for grandchildren. They stated that
the caring role gave them meaning and purpose to life. This was also reflected in this survey,
where 12% of carers were caring for more than one person with an illness and 4% were also
caring for a child. This increases the burden of caring these carers may experience.
Figure 13
Carer contact with their local GP was high, with 33 carers seeing their GP every 3 months or more
often. This is a potential source for carers to access health information.
0
2
4
6
8
10
12
14
16
18
Fortnight less than 3
mths
3-6 mths 6-12 mths more than 1 yr
When carer last saw General Practitioner
last saw GP
Page | 14
Hours of sleep carers have on average per night
Figure 14
Figure 15 The definition of working included any work outside the home, voluntary or paid.
0 5 10 15 20 25
0-4 hours
4-8 hours
8-16 hours
16-24 hours
24--30 hours
30+ hours
round the clock
Hours spent on average caring and working
per week
Number of working carers and
the time they spend working
Number of carers and the time
they spend caring
sleep per night on average
0-4 hrs= 7 carers
4-6 hrs =13 carers
6-8 hrs= 9 carers
Page | 15
Figure 16
The majority of the carers interviewed had been providing care for more than 4 years, with 30%
caring for 8 years or more. 34% of participants provided care 24 hours per day, for 7 days a week.
24% were caring for more than 30 hours per week. Fourteen of the carers interviewed had no one
to assist or to replace them in their caring role in an emergency situation. Lack of sleep was an
issue, with 29 carers sleeping less than 8 hours a night. 18% participants slept for 4 hours or less
each night and 24% an average of 4 to 6 hours a night. Poor sleep patterns, long hours spent
caring per week over years combined with low levels of psychological wellbeing greatly increase
the risk to the carer’s health and wellbeing.
05
1015
20
0-1 yr
0-4 yrs
4-8 yrs
8-12yrs
12+ yrs
Amount of years spent caring
number of carers
Page | 16
Qualitative results
The carers were asked three open ended questions to elicit information about their personal
experiences as a carer, as well as their perceptions of the health care they had received through
the Connecting Care Program. They were given the opportunity to provide ideas, suggestions or
feedback for the Program. The responses from each question were grouped into themes. The
themes are listed below (figure 17) with carer quotes to illustrate each theme.
Themes Responses
Q1. Positive aspects of the caring role
• Keeping him/her at home “Because I don’t want him in a home”
“…to try and help each other to stay at home”
• Family duty
“He is my dad, he would do it for me”
“Caring and helping mum who lovingly did the same for me as a newborn years ago”
• Comfort
“The ability to ensure that my wife of 60 years is having the most comfortable life I can provide”
“seeing her happy and well”
Themes Responses
Q2. Positive aspects of the Connecting Care Program
• Information
“…very personable, good to follow up and provided lots of information”
“Gave insight and information on essential programs available to assist wellbeing and recovery from
illnesses.”
• Reassurance
“…made it personal and felt like my dad was looked after and included me in what was going on”.
“Reassuring, good for me to have someone that came to our home rather than in the hospital”
• Caring
“…is exceptional. Very nice, caring and thoughtful”
“…has been wonderful at Southcare. So gentle with him and caring”
Page | 17
Themes Responses
Q3. Suggestions regarding service provision and carers
• Information
“I don’t know what to ask for because I don’t know what is available”
“To supply information like you are doing now.”
• Access
“So many things available but you know, you have to dig for it - half a dozen phones calls to get to
community transport etc’
“More access to information about what things are available”
• Caring and follow up
“…. is very good, caring and keeps following up on people”
“a package of information for people leaving hospital advising contact numbers etc”
Figure 17
Page | 18
Discussion
The carer interview provided an avenue for open and frank discussion with carers of those with
Chronic Disease. It provided the opportunity to identify the needs of this group of carers and to
initiate conversations about both the carer and care recipient’s motivating factors to make health
changes.
The project provided the opportunity for carers to express vital feedback. Interviewing via phone
enabled conversations to be initiated in the confidentiality of one on one circumstance, often in the
absence of the care recipient. This enabled a full and frank conversation and at a time that suited
the carer who is often time poor. The carer’s information received was vital in gaining insight into
areas where they needed support, and encouraged carers to think of future needs and options.
Many carers, regardless of English or non-English speaking background, had some confusion and
lack of understanding of the terminology or jargon used. This included difficulty understanding
what the service was, such as ‘respite’. When measuring health literacy as defined by (Jordan et
al, 2008), patients need to be able to seek and utilise health information to actively participate in
their chronic disease management. However, if their capacity is diminished due to varied reasons
including cognitive impairment, poor eyesight, limited access to the internet, carers are pivotal in
providing links and seeking support outside of the hospital setting. If carers also have poor health
literacy this could be a contributing factor to representation to hospital.
The options of varied support services such as telephone counselling were discussed with
participants during the interviews, as well as linking with local or peak carer specific Non-
Government Organisations. Discussions around respite and advance care plans were initiated
often for the first time. Many carers requested further information, and pamphlets and written
information were added to the Carer Resource Pack, and posted to the carer.
Key barriers and issues identified
1. Longevity of the carer role: The majority of the Chronic Disease carers interviewed had been
providing care for more than 4 years, with 30% caring for 8 years or more. 34% of participants
provided care 24 hours per day, for 7 days a week. 24% were caring for more than 30 hours
per week. Fourteen of the carers interviewed had no one to assist or to replace them in their
caring role in an emergency situation.
2. Lack of understanding of the role of Health Professionals and Health Services: Five
participants interviewed were confused or unaware of specific health professionals’ roles.
When asked when they last saw or had any support from a social worker, one response was
“they came home and installed the rails in the bathroom”.
3. Lack of support and inadequate links to local services: (see figure 18). Many of the carers
interviewed reported a sense of isolation in the caring role with 14 of the 50 carers interviewed
reporting nobody was available to replace them in their caring role. They also reported that
they had no contact with other carers or access to counselling & carer support groups. 27
carers had someone to replace them only for a short term.
Page | 19
4. Misconceptions about the role of Carers Support groups: Some carers expressed the opinion
that carer support groups might represent sitting around expressing each other’s problems and
that this was not for them. Many were not aware of the actual role and purpose of carer groups
such as provision of information and resources, an opportunity to share problems and
experiences, a period of respite from the caring role and an opportunity for social interaction
and support with others. Having a variety of carer group models may be beneficial to the carer
in order to meet their individual needs.
5. Health Risks to the Carer: Many of the Chronic Disease carers interviewed shared similar
lifestyles over a lifetime with the person they care for and 72% reported living with the person
they care for.
This increases the risks of the carer also developing chronic disease and becoming patients
themselves. 42% of carers also had an existing health condition which affected their caring role
- 18% of these were cardiac related.
When asked about their own wellbeing 40% of carers said they didn’t have time to look after
their own health. The majority (58%) prioritised the health of the care recipient above their own.
24% of participants stated they had felt anxious or depressed however only 18% had ever
received any counselling.
Lack of sleep was reported as an issue, with 29 carers sleeping less than 8 hours a night; 18%
participants slept for 4 hours or less each night and 24% an average of 4 to 6 hours a night.
Poor sleep patterns, long hours spent caring per week over years combined with low levels of
psychological wellbeing greatly increase the risk to the carer’s health and wellbeing.
Page | 20
Potential Implications for Chronic Disease Staff
The aim of the project was to identify needs of carers within the chronic disease setting in order to
develop strategies that could meet the needs identified. The data showed that carers of people
with Chronic Disease have significant need for support and information. Staff within the SESLHD
Chronic Diseases Unit have the opportunity to play an integral role in supporting carers of people
with chronic disease. As a result of the analysis the following strategies are recommended.
1. Carer competency training for all staff in the chronic disease teams
Completion of the NSW Health Education and Training Institute (HETI) e-learning package will
increase clinicians’ knowledge and understanding of the impact of caring, relevant legislation
and long term benefits of identification and recognition of carers.
Cultural competence within health practice is an important consideration for health staff in
order to establish relationships with clients and carers from different cultural backgrounds. This
is particularly important in attaining self-management of their chronic disease and linking in
with support services.
2. Routine carer identification and assessments
Health staff need to play an active role in identifying carers of those with Chronic Disease and
linking them to carer support services and resources at an early stage. Carers are routinely
identified as part of the assessment of new clients/patients within the Connecting Care
Program. A range of tools are available, including the Ongoing Needs Identification (ONI)
Screening Tools, which could be customised for local use. Telephone interviews provide an
opportunity for the carer to speak openly to bring up areas of concern which may require
support and referral while not in the presence of the care recipient. Strategies to include in
assessing carers could include the need for referral for counselling or a carer support group.
Early identification of carers will provide essential connections to isolated and hidden carers,
including links to local services, information and other carers in the community.
3. Improve carers’ access to information
The routine provision of the SESLHD Carer Information Pack would allow carers to read
material at their own pace and time. The addition of specific tailored information will encourage
carers to plan ahead, and address any issues they may have identified. This could include
brochures for local respite, advance care planning, palliative care and guardianship. Clearly
defining the role of relevant health professionals to carers is important and this may need to be
provided in writing to consolidate the information. Explaining the various functions of carer
support groups and services may encourage more carers to attend groups and access
resources and information.
4. Identification of carer specific responsibilities within the Chronic Disease team
This would allow the documented assessment of all carers of new connecting care clients
within the team framework. This could be an expanded carer resource role as part of an
existing position in the team. The identified carer focus would be a collaborative strategy with
the SESLHD Carers Program to resource the team and clinicians across the District and be
able to provide the promotion of ongoing feedback and evaluative focus groups from carers
connected to the service. Periodic surveys of the carers who provide care to connecting care
clients to assess the service will provide consumer feedback to meet the requirement of the
National Safety and Quality Health Service (NSQHS) Standards, Standard 2, Partnering with
clients and carers (Australian Commission on Safety and Quality in Health Care, 2011) as well
as obligations of the NSW Carer (Recognition) Act, 2010.
Page | 21
Conclusion
The responses of the carers surveyed indicated that carers of those with chronic disease have
significant need for support and information. The project data and analysis revealed a number of
significant issues for carers, which increased their risks of being unable to continue to care through
ill health, and the possibility of developing chronic disease themselves. This is highlighted by the
lifestyles the carers have shared with the care recipient, often over an extended period of time.
Health staff can play an integral role in assessing the needs of individual carers, identifying those
with health risks and referring them to appropriate health services
The NSW Health Carers (Recognition) Act Implementation Plan 2013-2016 states that ‘carers are
our colleagues in NSW Health’ (NSW Health, p2) reinforcing the importance of continuing to
consult with and include carers who access health services. To be able to effectively engage and
include carers it is vital that they are able to understand the language and information used by
health practitioners. Carers need to be health literate to be equal partners and this survey
demonstrated that a number of carers were unable to understand the information due to medical
terms and language used by clinicians, poor English skills or poor eyesight.
Clinicians working in the chronic disease teams across the District have an opportunity to make a
difference in the lives of the carers, through the development and implementation of a range of
tailored strategies.
Page | 22
Appendix The carer assessment tool used for the survey
Carers Needs Within the
Chronic Care Setting –
SESLHD tool (2013)
Date:
1. Demographics
Aboriginal/ Torres Strait Islander: Y/N
Employed: � No � Yes – p/time, f/time, casual,
volunteer
Sex: M /F
Age: � 10-24 � 25-35 � 36-45 � 46-65
� 65 + over
Post code / Suburb
���� ……………………………………………………………………
Interview via: � phone
� in person
Relationship to person being cared for:
� spouse/partner � son/daughter � friend
other
……………………………………………………………………
Do you co-reside with the person you care
for? � No � Yes
If yes, do you have children?
� No � Yes
If YES, Do you have children living with
you? � No � Yes
Ages: � 0-8 � 9-14 �15-24
CALD Background: � No � Yes
Interpreter Required: � No � Yes
If yes, language:
……………………………………………………………………
If yes, what is your country of birth?
……………………………………………………………………
Is English your second language? � No � Yes
What language do you usually speak to the person being
cared for?
……………………………………………………………………
2. Physical Wellbeing
Do you have any physical medical conditions that affect your caring role: � No � Yes
If yes, what major medical condition: � back issues � shoulder/neck issues � poor eyesight
� hearing � other
……………………………………………………………………………………………………………………………
If yes, when was the last time you saw your GP? � within fortnight � less than 3 months ago
� 3-6 months ago � 6-12 months ago � over 1 year ago
Is the health of the person you are caring for more important than your own health? � No � Yes
The reason is:
� lack of time � cost � transport � other
…………………………………………………………………………………………………………………………..
3. Psychological Wellbeing
Do you suffer from: (tick one or more applicable boxes) - Is this diagnosed anxiety/depression or reported
feelings of anxiety & depression?
� anxiety /depression: If yes, do you take medication for this? � No � Yes
Are they effective? � No � Yes
� poor sleep: If yes, how many hours on average would you sleep at night?
� 0-4 hrs � 4-6 hrs � 6-8hrs � 8 + hrs
Page | 23
Do you take medication for this? � No � Yes Are they effective? � No � Yes
Have you ever had counselling? � No � Yes – � private � group session � both
How long ago? � within the last month � between 1-3 mths � 3-6 mths � 6-12 mths
� over a year ago
Who referred you for counselling? � self � social worker � GP
other ……………………………………………………………….
4. Caring Role
How many years have you been caring for the person you care for?
� 0-1yr � 1-4yrs � 4-8yrs � 8-12yrs � 12yrs +
How many hours per week do you estimate is spent in your caring role?
� 0-4hrs � 4-8hrs � 8-16hrs � 16-24hrs � 24-30hrs � over 30hrs
Do you receive the carer’s allowance? � Yes � No
Have you applied? � Yes � No � would like to know more about it?
Are you caring for anyone else with an illness? � No � Yes – who?
.........................................................................................................................................................................
Do you share your caring role with anyone else? � No � Yes
If you were to be ill (short or long term), do you have someone you can rely on to take over your caring
role? � No � Yes – � short term � long term
What is the most positive aspect of your caring role?
.........................................................................................................................................................................
.........................................................................................................................................................................
.........................................................................................................................................................................
5. Access
Transport Do you have any transport issues in your caring role? � No � Yes
If yes, � cost � access � other…………………………………………………
Do you have a NSW companion card? � No � Yes
Applied for one? � No � Yes Health literacy Do you have problems reading written information?
� No
� Yes, because of: � poor eyesight � difficulty reading
� English is second language
Is it hard to understand what the doctor or nurse tells you?
� No
� Yes, because of : � unknown medical terms � language � your hearing
� their speech � other
…………………………………………………………………………………………………
…………………………………………………………………………………………………
…………………………………………………………………………………………………
Communication How comfortable are you asking the doctor or nurse questions?
� always comfortable, feel that all your questions are answered
� most of the time
� sometimes comfortable
� rarely comfortable
� never comfortable
Education Have you ever received information about services to support carers?
� No
� Yes – where from? ..............................................................................................
Page | 24
How much do you know about the illness the person you are caring for has?
� know all
� know most
� know more or less
� not a lot
� confused or don’t know
Would you like to know more information about the illness the person you are caring
for has?
� No
� Yes – how? � written information � via a health professional
� online/internet website information
Do you have internet access? � No � Yes
6. Services & Support
Social support Do you have regular contact with other carers?
� No � Yes – how often? ............................................................................
Respite Do you receive respite? � No � Yes – how often per week? �1-2hrs � 2-3hrs
� 3-4hrs � 4-5hrs � 5-6hrs � 6-8hrs � 8hrs+
Do you receive informal respite? � No � Yes
By whom? .................................................................................................................
Social work Have you received assistance from a social worker?
� No
� Yes When? � in the last month � within the last 3 mths
� within the last 6 mths � within the last 12 mths � over 12 mths ago?
NGO/Local
services
Are you currently linked in with local services? � No � Yes
Which? .....................................................................................................................
Are you a member of Carers NSW? � No � Yes
7. Quality Improvement
Can you tell me what you found useful when _______________ the care coordinator/ health staff came
to visit you at home?
.........................................................................................................................................................................
.........................................................................................................................................................................
.........................................................................................................................................................................
Do you have any suggestions for the care coordinators on how to support carers like yourself?
.........................................................................................................................................................................
.........................................................................................................................................................................
.........................................................................................................................................................................
Page | 25
References
Australian Bureau of Statistics. (2011). Australian Social Trends March 2011: Life expectancy
trends - Australia. Retrieved October 11, 2013 from
http://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/4102.0Main+Features10Mar+2011
Australian Bureau of Statistics. (2011). 4430.0 - Disability, Ageing and Carers, Australia: Summary
of Findings, 2012, Accessed January 16th 2014 from:
http://www.abs.gov.au/ausstats/[email protected]/Lookup/0F299F0FB0C27050CA257C210011ADC6?ope
ndocument
Australian Bureau of Statistics. (2006). Australian Social Trends March 2006: Future population
growth and ageing. Retrieved October 11, 2013 from
http://www.safetyandquality.gov.au/our-work/accreditation
Australian Commission on Safety and Quality in Health Care: National Safety and Quality Health
Service. (2013). Retrieved October 11, 2013 from
http://www.health.gov.au/internet/publications/publishing.nsf/Content/ageing-manuals-sgr-
sgrindex.htm~ageing-manuals-sgr-sgrindex-2.htm
Australian Commission on Safety and Quality in Health Care (ACSQHC) (September 2011), National Safety and Quality Health Service Standards, ACSQHC, Sydney. http://www.safetyandquality.gov.au/wp-content/uploads/2011/09/NSQHS-Standards-Sept-2012.pdf
Cummins, R.A., Hughes, J., Tomyn, A., Gibson, A., Woerner, J. & Lai, L. (2007). The Wellbeing of
Australians. Carer Health and Wellbeing. Geelong, Vic, Australia: Deakin University
Daatland, S. O. (1996). Adapting the Scandinavian model of care for elderly people: Caring for
Frail Elderly People: Policies in Evolution. Social Policy Studies,(19).Organisation for Economic
and Co-operation and Development, Paris. p.247-260
Kass-Bartelmes, B.L., & Hughes, R. Advance care planning: preferences for care at the end of life.
Journal of Palliative Care Pharmacotherapy,18(1), p.87-109
National Centre for Social and Economic Modelling. (2004). Who’s going to care? Informal care
and ageing population. University of Canberra, ACT
New South Wales Department of Family and Community Services. (2010). NSW Carers
Recognition Act 2010: Implementation guidelines for public sector agencies. www.facs.nsw.gov.au
New South Wales Department of Family and Community Services. (2011). Identifying and
supporting young carers: A guide for service providers. www.adhc.nsw.gov.au
NSW Health, (2013) NSW Health Carers (Recognition) Act Implementation Plan 2013-2016
New South Wales Department of Health. (2009). Essentials of care: Resource guide for facilitators
Parliament of the Commonwealth of Australia (2009). Who Cares….? Report on the Inquiry into
Better Support for Carers
South Eastern Sydney Local Health District, (2012) South Eastern Sydney Local Health District
Disability Action Plan 2012-2015
